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J-Pouch ForumsOstomy & Skin
J-Pouch Issues - At what point did you decide to go back and get a permanent ostomy?
Mikah the Bike LoverMikah the Bike Lover
CJR Caty, Thank you for sharing your story & experience. I am in a similar situation and symptoms. J pouch was fine until last few years, but now never out the loo, pain and lost a load of weight, restricted diet....I miss all food so much. Time to make a series decision. God bless you [ more ]
Mary2017 So happy to hear that! Thank-you! And your welcome! Anytime! [ more ]
Kushami ❤️
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J-Pouch ForumsOstomy & Skin
excision surgery
P Pouch2021
Mary2017 Oh that's amazing!! I am happy you gained 12 needed pounds. I love how you said needed lol. Be careful with working out with your ostomy, working out can cause issues like hernias so be careful. I use a ostomy belt at all times. I love the wrap idea you mentioned So happy your well dear!! Why did you have to get your pouch excised? [ more ]
n/a Hi - I had my jpouch removed in '18 (1 year after it had been disconnected). I posted my experience with the removal at the Cleveland Clinic, if you'd like to take a look at it. https://www.j-pouch.org/topic/...al-date-and-time-set . The Cleveland Clinic team was just great. I did travel about 2-1/2 hrs to have the removal done there, and while travelling did have its inconveniences, I felt the Clinic was well worth the trips. I'm doing well with my end ileostomy, it's so nice to feel good... [ more ]
Mikah the Bike Lover ❤️
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J-Pouch ForumsOstomy & Skin
Anal skin breakdown and butt burn
B Brad9481
Jgrant Hi, I know I’m very late to this discussion, but I’ve had a lot of bile salt diarrhea, and the pain is indescribable. I had my ileoanal anastomosis in the 1980’s and just recently found a product that works incredibly well. It’s made by Medline, and it’s called Olivamine Calazime skin protectant paste. You can find it online. I got mine from a colorectal surgeon when I was having trouble with fissures brought about by a combination of SIBO and retrograde cricopharyngeal disorder (I can’t... [ more ]
ElizaB Thank you for your prompt reply. I will start it today...fingers crossed it helps out because I am at the end of my rope with this recent episode! [ more ]
suterd I use on top of each other in the morning before work if I am running late. I try to use the ketoconazole first normally and wait about half hour and then the triamcinolone...it is thicker. Then head off to work. In evening I do ketoconazole when I return home and the other before bed. So I try and do some space between. Hope it works for you. Unless I am having lots of issues, it works. Went to dermatologist when the surgeon was horrified about my butt. But even with occasional issues,... [ more ]
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J-Pouch ForumsOstomy & Skin
Blockages
MysticobraMysticobra
LORI726 Hello! I agree that blockages are horrible. Many of my blockages have occurred post op, but I did have a partial blockage a few years ago with my ileostomy. I don’t remember what I ate (which is surprising) but I guess I haven’t eaten it again! The only other advice I can give is to apply a heating pad. I think I read that somewhere online. Not sure if it helped or not but I will try anything to avoid the dreaded NG tube. I completely understand where you are coming from with the no more... [ more ]
Mysticobra Thanks all. I'm still being careful. Just a small update. No biggie. Still sore. I would only guess only four days out of the block it's still healing or shock. I am leaning toward shock only because it sounds better. Healing means damage. Trying to be light about the situation while still being serious in paying attention to it. Have a good day to anyone reading this. Richard. [ more ]
Mysticobra That is part of what I needed to know. Just part Thank you. The rest I'll find out through a gastro Dr probably a mri first Second. If they don't see anything probably a scope. Never had my small intestine scoped through the stoma. Not worried about that. Plenty of scopes the other way. Lol. Reason as I may have said. That I'm going through the process of getting a new gastro Dr is to ask questions and probably procedures. I like everyone else here have been through so many Dr appointments... [ more ]
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J-Pouch ForumsOstomy & Skin
How long did it take you to master ileo bag wearing?
TE MarieTE Marie
TE Marie I agree we have to make what we have decided upon work. There aren't anymore choices for me. I am going to have to go to a pain management doctor as the lysing of my adhesions and shutting down of my j-pouch has not gotten rid of my pain. The medication I have been taking for 5 years either isn't strong enough as I have more pain or I am needing more because I have built up a tolerance. That is a slippery slope. Dependence is there but not addiction, I don't think. I am putting up with more... [ more ]
Mysticobra That is good news Janet. We all have to be so strong to get through any of this. You sound like your doing well. I know it's not one hundred percent. But we have to make it work. Keep us up on things. Especially good news! Richard. [ more ]
TE Marie Great news Janet! [ more ]
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J-Pouch ForumsOstomy & Skin
Need Suggestions
Y ytcrockpot
Laura Fogelman Convatec is a great company and their nurses are very helpful, supportive and willing to send samples to patients [ more ]
Laura Fogelman The only thing I can think of that might help is to wear a surgical glove when trying to cut her appliance. I have a K-Pouch and use a catheter. I also have arthritis in my hands but if I remember to down a glove it does give me some extra support. I hope this helps. Laura [ more ]
n/a How nice of you to reach out for your friend. I might suggest looking into moldable wafers. I also have arthritis in my thumbs (having surgery for it in a few weeks), and have found that the convatec moldables are SO much easier on my hands, and easier to shape/fit around my weirdly shape stoma than cutting. You can get samples by calling convatec and discussing with one of their nurses. Let me know if you need their number and I'll dig it out for you. [ more ]
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J-Pouch ForumsOstomy & Skin
I'm scared, tentative surgical date for j-pouch removal
TE MarieTE Marie
Angie Wilson Keep it up TE!! So proud of you - I'm glad to hear from you. Why we have to wait so long to get the anti biotic or whatever it is drives me nuts - but then I realize it's "a system" and there are many others in line calling a doctor, etc. I remember years ago - when I had my pouch surgery - things were so different - I got instant help for anything. One call to doctor's nurse and I got help - well, that was 1987 - and healthcare was so different then. I feel like now doctors (many of them)... [ more ]
TE Marie I forgot to post that the day after the Urology NP suggested P.T. her office called me saying that I did have a bladder infection and she'd called in an antibiotic prescription. I finished taking it a few days ago and hope my recovery continues. A few steps forward then one backward..... [ more ]
Angie Wilson Yep - one day at a time. OH- how the mind wants to figure out the future - especially when one is ill, etc. Hang in there, TE! [ more ]
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J-Pouch ForumsOstomy & Skin
Pain at former stoma site
T TCM
Former Member I still get pain at my former stoma site as well. I think its the scar tissue. [ more ]
James112002 I have had my pouch since 2001. Intermittently have had discomfort at the old stoma site, but nothing significant, always went away Currently, it is happening more frequently and the discomfort is more pronounced. Feels like stool getting stuck in that area (I am guessing) Would love to kmow if anyone else could speak to this. Thanks! [ more ]
TCM Thank you. That helps. [ more ]
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J-Pouch ForumsOstomy & Skin
Flying and illeostomy
heverhever
JanW2 Hi Jan 15, I have had the Blue card , but doesn’t make a difference and also TSA pre approval , they do have to be careful, guess even with us old folks haha. But , it’s just a bit of a Cranky World now. Some people are in the wrong jobs. I’m traveling alone in January and reminding myself to deep breath already. Am I just nuts? And still the COVID issues!! But very happy to be as I am today. You stay safe and enjoy the Holidays Jan [ more ]
jan15 I have a K pouch and not only got patted down, but pulled aside to show off my stoma. This despite explaining my situation in great detail. BTW I am in my 70s. I said something rude to the TSA person, which wasn't necessary but they really treated me terribly and was about to miss my flight. I would love a letter or card that I could show. It doesn't help that four major joints are replaced so I trigger the alarm. [ more ]
Former Member ❤️
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J-Pouch ForumsOstomy & Skin
How fast do you have to fix a leak?
K Kushami
Mysticobra Old post. Sorry you can't change as quickly as you'd want to. I wear a convetec wafer that has white tape. I notice a leak immediately. It hits the white tape and gives me time to get ready to change. I have waited to see how long it takes to actually hit the edge of the white tape. Doesn't take long. 20+ minutes. I would hope by now you may have it figured out. The more or longer you have an ileo the quicker you get at changing it. As said above. Changing more often when you feel you can do... [ more ]
DMC If you normally change every 4 days. Try every 3 days. Don't push your ware time. Good luck [ more ]
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J-Pouch ForumsOstomy & Skin
ostomy output after jpouch?
J jlc
dlewicki I’m assuming from what I’ve read that it varies depending on the person. I’m 5 weeks out from my takedown as of tomorrow and my stool has been anywhere from very soft but formed to mashed potato-ish. Depending on what I eat/time of day. Metamucil has helped form things up and can help expand the pouch but it won’t necessarily slow down activity like Imodium would. [ more ]
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J-Pouch ForumsOstomy & Skin
Donated.
MysticobraMysticobra
Mysticobra Mods. Could you please delete this thread. I will find a place to donate them. Thank you. Richard. [ more ]
Mysticobra I'll give it a few days. And see if the little town here has a shelter. If not I'll use the link above. Someone can use them. Maybe not here. But somewhere. Richard. [ more ]
n/a That's kind of you, Richard. If you get no takers, another option is FOW: https://www.fowusa.org/ . I've sent my extras out to them in the past, they are legit. Hope all's well! [ more ]
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J-Pouch ForumsOstomy & Skin
Loop ileostomy
K Kushami
New577 Hi, I never understood how this could be physically possible. When I had my loop my surgeon stapled shut the bottom limb leading to the jpouch and anus. Although I had mucous discharge for the 13 weeks of the osteomy, there was no stool. [ more ]
Kushami Thank you. I just couldn’t seem to find an answer by searching on this one. [ more ]
Former Member ❤️
See all 9 replies...
J-Pouch ForumsOstomy & Skin
White sores on stoma
K Kimmiebee84
PouchLogic You probably should not be taking asprin. [ more ]
Kimmiebee84 Could aspirin cause these? I have been taking it for headaches lately, because (let's be honest) Tylenol is like taking skittles. I get chronic headaches, and I am finding that my migraine medicine is causing more of them. If you somebody could reply regarding this I would really appreciate it! [ more ]
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J-Pouch ForumsOstomy & Skin
J-pouch leakage after ileostomy
K Kirtymusic
LORI726 Hi! I have a diverted J pouch with a loop ileostomy since 10/15. I have just been dragging my feet about the final step/decision which will most likely be j pouch removal/permanent ileo. My j pouch itself wasn't my problem per se, but 2 nasty fistulas in my rectal area led to my diversion. I have some sort of rectal discharge every day which is good and bad. When the leakage stops, I don't feel well (abdominal and rectal area pressure) and then I have a lot of discharge a few days later and... [ more ]
TE Marie Thanks SAFF. I am doing a lot better without my j-pouch. I had it removed 6 months after I had it diverted to an end ileo. The pathology report showed chronic pouchitis was still there. It hadn't gone away while it wasn't being used. I should have done as my surgeon wanted and had it removed when it was diverted. It would have saved me a surgery! [ more ]
Kirtymusic Thank you for your replies! My surgeon wanted to leave it in because it was so inflamed. He wanted to give it time to heal. From your replies, I think I had a little cuffitis, but it is gone now (fingers crossed). I am seeing my doctor in August and will have her take a look. I'm hoping suppositories will help if it continues to be an issue. Antibiotics haven't done much for me in the past, and I worry about being on them. I hope everyone continues to have good health! [ more ]
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J-Pouch ForumsOstomy & Skin
Finally ditching the j pouch
LORI726LORI726
Kushami ❤️
Saff Hi Wendy, I second Richards sentiments, I’ve just had the surgery 4 mths ago and I was terrified for a few years before doing it, but it’s worked out fine, it was also my easiest surgery to recover from. I think once I decided to finally do it and make a commitment it was easier, so I hope you feel some relief having made a decision. Now hopefully you can do your best to be well for the surgery and have all your questions answered as well as possible before hand. And take time to recover and... [ more ]
WendyNemec Thank you everyone! It's good to hear that life after a J-pouch removal sounds promising. Bill, I hadn't heard about the BCIR. Thank you! I have been reading everything I can on it. I go to Florida often, so the trip wouldn't be such a hardship if my insurance pays for the surgery and stay. I know I am also mentally and physically so drained and want...need... to do something. This group was a savior for me back when I had my J-pouch surgery done and I am so glad that it is here for me again. [ more ]
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J-Pouch ForumsOstomy & Skin
pouch removal
K kmj
Holly HM Amen to that. Just trying to keep my mind off of the surgery. I really do dread a 6 hour surgery. That is how long my original surgery took. They took out my uterus and ovaries with the first surgery. My surgeon said it would be better not to have to go back in there for anything, so they basically cleaned out anything I didn't need. The surgeon that will be doing this surgery says it may take that long because chances are the pouch has attached itself to my bladder and will need delicate... [ more ]
Lambiepie Holly, I am feeling somewhat anxious over this major operation. Like you, I find myself saying, "next summer, I can have a bonfire on the beach and eat a sandwich!" I did very well with my ileostomy. I felt strong and like I had conquered something. The only leaks I had were 2 near the wafer early on because I had neglected to remeasure my stoma and a handful later from my watery loop output that I didnt empty enough and would break my clip open. Oh, and one from a large salad I ate late at... [ more ]
Holly HM Karen, thanks for asking. Are you having any leakage from your anal area? The nurse told me that I would have some, but the body will start to absorb it and it will quit after a while. I have been looking through ostomy supplies. When I had my temp ileo, the area under the wafer would break out and I would be miserable. That was 20 years ago and hopefully the products have changed and gotten better. I was reading about an appliance that has a filter on it for gas. Do you use that or... [ more ]
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J-Pouch ForumsOstomy & Skin
Has your j pouch been removed?
S Starry01
Starry01 I think a colorectal sirgeon should be seen. I travelled 12 hours to Cleveland clinic for surgery for the ostomy and will do the same for the j pouch removal. ininderstand the financial situation. I would find a good colorectal surgeon in your network Or as allykat stated talk to your dr about billing issues. [ more ]
AllyKat Lori, I would talk to your old doctor especially since you have been with him so long. Maybe they can bill thru another doctor in the office or work out something else. My doctors have worked out things with me I don't know how I would feel about a pelvic Surgeon. I guess you could always head to NY or Cleaveland. Maybe John Hopkins would be closer? I know when you feel awful having to travel to interview a surgeon Is such a pain. [ more ]
LORI726 Starry-I need to change doctors b/c my old colon/rectal surgeon is not covered by my insurance so I have nothing scheduled yet. I was going to say screw it and go to him anyway but after 2 outpatient OR trips that only lasted 1 hour each, I owe at least $8000 with the bills I have so far. I am 41 years old and he has been my doctor since I got my colon out at 18 so I feel like I have just broken up with a long time friend. I tried to use the colon/rectal surgeons associated with my hospital... [ more ]
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J-Pouch ForumsOstomy & Skin
Skin irritation around stoma
R Raj
Art Te used a beeswax ring for awhile and tried various mounts;; sometimes the small pimple red itch but only having a stoma for about a year during the 3 gook u my J pouch surgeriesa ral red purple irriationkind of like dead exosed to the air flesh developed this was when my surgeon not my GI doctor recommended the Collagel seaweed tape and some form of seaweed based crème which worked very well and calmed the irritation down.....still had to go for fourth surgery due to the stoma herniating... [ more ]
TE Marie Good news - things have improved. Is the itching under the whole appliance or limited to around the stoma? If it's just around the stoma have you ever tried using something like a ring or paste around the stoma under the appliance? [ more ]
woodstock69 So to update, Coloplast are by far superior, the new sensura mio flip has few barrier areas and is soft compared to other convex, I also use their sensura convex both still cause some itching but I am starting to think it is the acid from food somehow. [ more ]
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J-Pouch ForumsOstomy & Skin
Change days?
MysticobraMysticobra
Mysticobra I like to wash it without it on. It just feels good and it's a safe place to be if it starts acting up. I clean all the skin where the barrier sticks so by the time I get out and dried off all I have to do is apply it. Convetec has a tape around it that if it gets wet it's just not the same. Best just to shower with it off. I'm comfortable with it. Richard. [ more ]
TE Marie I have all sorts of hydrating fluid additives etc. The WHO like packets off of amazon.com and another liquid concentrate work well. NUUN tablets are fantastic. When I get the IV fluid my electrolytes always test on the low side of normal so you can need IV fluids and normal range electrolytes. I bought a stoma cup. I put it on with an ostomy belt. This is placed over the stoma to catch any output that might happen while getting your appliance ready. I put toilet paper or part of a paper... [ more ]
crohn's j-poucher Great progress Richard woohoo!! How come you don't just shower with the appliance on and change it after the shower? [ more ]
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J-Pouch ForumsOstomy & Skin
Perfect Pooping Position
P PoucherInTO
PoucherInTO AHAHAHAHA Donna! That's hilarious, thanks for the good laugh [ more ]
Donna H Ha Ha, Kristy. You are funny! As I said above, I discovered I can empty without pulling my pants down by facing the toilet tank. Well, I was at a restaurant last night and I did my duty and then had to reach backwards to get the tp which is now behind me because of my position. It was a smaller toilet than mine at home and it was a bit of a reach and when I did, I fell right off of the toilet and onto the floor. I started laughing because what else could I do. It was funny but I was glad... [ more ]
PoucherInTO OK All, so here I was thinking that my butt must be REALLY large because I just couldn't get the right amount of space to cleanly empty my bag if sitting on the toilet. Then I realised the problem is not with my booty, but my toilet is kind of round and small. I used a public toilet which was shaped kind of like an oval and there was so much more room! And for those with a sense of humor, "Does this toilet make my butt look big?" Hehehe. [ more ]
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J-Pouch ForumsOstomy & Skin
Leaking! what products work for you? Help
AllyKatAllyKat
Lambiepie Originally Posted by AllyKat: I use the glad press and seal. Sometimes a little gets in but today it was dry. Just fold the bag in half and press it down onto your skin. Just showered with only press and seal covering my bag, no tape, and it stayed pretty dry. Thanks, AllyKat! [ more ]
Lambiepie Wow, so simple AllyKat. I'll try this, thanks. Hope you're doing at least a little better. [ more ]
AllyKat I use the glad press and seal. Sometimes a little gets in but today it was dry. Just fold the bag in half and press it down onto your skin. [ more ]
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J-Pouch ForumsOstomy & Skin
Parastomal Hernia
F Fosty
TE Marie Sorry Frosty, I just noticed your post. Maybe you need a second opinion. Good doctors do not care if you get one. I had my surgery at Mayo's by the surgeon that removed my j-pouch. She had to go through mesh and scar tissue/adhesions of which she worked on. She worked longer on my adhesions than she did on the hernias. I bet she is tired if seeing my guts! 4th surgery she's done. I wouldn't want to move my ileo to the other side either 😣 I am so sorry you are going through this. Does your... [ more ]
Former Member Sorry to hear about your suffering, where do you think your hernia came from? Doing specific exercises or extensive stuff??? [ more ]
Fosty Hi there! Sorry so long for reply. I had the surgery Jan 8th but unable to do laparoscopic or mesh do to scar tissue. Hernia is back ugh and worse. Saw surgeon and trying another with just mesh on top. She said could go 50/50. The only other is moving stoma to the other side which is much more major surgery she said. How are you doing and have you had many hernias and know anything about changing to the other side? Hope you’re doing well. Lynn [ more ]
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J-Pouch ForumsOstomy & Skin
Ileostomy location, surgery next week
J Jmitch
TE Marie Thanks JenJen, I might have you beat in number of surgeries. My husband told me to have them put in a zipper. I hate wearing that 6" wide elastic belt so really appreciate you sharing your doctor's guidance. It really bothers me as I have fibromyalgia and most bras bother me too. My surgeon didn't tell me to wear it and I do think the nurses fit me for it in order to keep the appliance on longer. I have been wearing it for a few hours after I put on a new bag. It is worth that time because... [ more ]
JenJen TE Marie, I am sorry to hear about your need for a hernia surgery. I had one 5 years ago -- after 3 colon (j-pouch) surgeries in the 5 years preceding it and before a k-pouch surgery 2 years later. The surgeon repaired both a large, post surgical, midline and a small stoma hernia using a "component separation" technique and "biologic mesh" (pig tissue.) I will tell you what I remember my doc (McIntosh, who was highly recommended as the best hernia surgeon in Metro Detroit and the mid-west)... [ more ]
TE Marie Thanks N/A, I'll check out that group. I'm in several FB groups but have been off of there for a while. My stoma was revised during the removal of my j-pouch too. I was diverted for 6 months before the removal. Hopefully the third time is a charm! [ more ]
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J-Pouch ForumsOstomy & Skin
Maintenance meds post j pouch removal?
LORI726LORI726
LORI726 Thanks LHetti! No drugs sounds like a dream.... May you have continued intestinal happiness!! [ more ]
LHetti I had my jpouch removed and my dx was Crohn's (fistulas, abcesses, 4cm mass next the pouch). I take nothing. It's amazing! No new issues and I hope it stays this way! I've not had any issues with my small bowel, so no need for medication. [ more ]
TE Marie Thanks for asking Lori. My surgeon is leaving my j-pouch in. I am not emotionally able to handle that big removal operation at this time. Plus this is what she suggested. I was hoping I was hoping to have the option of getting an operation to get rid of my cuff and advance the pouch down. She said that wouldn't help as my pouch is not working. She suspects pelvic floor dysfunction. I am sad but she is probably right. After she dilated me under anesthesia it didn't improve much. I have... [ more ]
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J-Pouch ForumsOstomy & Skin
Tips For Leakage Prevention and Extending Life of Bag
CalifornicationCalifornication
TE Marie Unfortunately I have to cut my wafer as my ileo shape is more oval. I just started putting the ring on my skin vs putting it on the appliance and then applying the wafer ring and all. This has really helped my skin under the wafer plus I've been getting longer wear time. One week is a great accomplishment in wear time! Thanks for your post and links Cailfornication. [ more ]
Mysticobra I use a precut wafer also. I found out after using your own cut and precut that precut has less problems. I can't cut a circle worth a nickel. Lol. You can order some to your size precut. Some places will precut for you.. Or you can buy a cutter that cuts to your size and do it yourself. No scissors. [ more ]
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J-Pouch ForumsOstomy & Skin
3 Weeks Out From J Pouch Removed, Now Perm Ileo
P PoucherInTO
Holly HM So very glad to hear that you are doing well and the surgery was better this time. I got an abscess after my first surgery with temp over 104. I almost died from the infection, so that pushed my recovery time to about 9 weeks. Praying and hoping this one goes better. Please keep us posted about your continuing recovery. Homie [ more ]
LHetti I had my 15 year old jpouch removed this April. It's a big surgery and my barbie butt had to heal as well as that big midline incision. But it was ONE big surgery. For me, it was at least a 6 week recovery, but went much smoother than all the complications of my colectomy/jpouch surgery. I know there are hurdles anytime we face surgery, but my experience was better this time. Laura [ more ]
goldie I'm going to have my jpouch removed after 22 years due to Crohns...was the removal surgery more difficult then the creation of the jpouch? [ more ]
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J-Pouch ForumsOstomy & Skin
Insatiable Itching
CindyCCindyC
Former Member ❤️
CindyC Oh how I hate that we are dealing with this. I really was hoping that the Cholestyram powder I was recently prescribed was going to be the final medication or anything else that I would need to take for this issue because it helped so much.. it was like night and day!! However, I had an allergic reaction to it, my lips blistered, felt hot and very dry. My Dr. prescribed another medication that is supposed to be comparable but does nothing for me. The Calmoseptine does calm down the burning... [ more ]
Daffodilly This has been an issue for me too ever since takedown 7 years ago. Here is how I manage it. I use Calmoseptine after every BM. I have tried all fibers and the one that works best for me is Heather's Tummy Fiber (1 teaspoon in the morning.). At times I use Recticare cream (Amazon) which is a strong lidocaine type cream. I also don't eat grains. On occasion I do and that seems to make it worse. If I notice the area is red and inflamed looking I use Monistat cream. If it still isn't under... [ more ]
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J-Pouch ForumsOstomy & Skin
Dessicated coconut
heverhever
Saff Hi Heather, dessicated coconut is fine for me, its the stringy fruits / veg like pithy citrus, stringy greens like asian greens, celery, and raw apples and fruits with lots of skin that cause trouble for me. [ more ]
hever Thanks for your replies, I used to eat coconut macaroons too(ex-Londoner), thats what I thought could happen as I'd heard from others in the past that they had probs with certain foods. I could never eat pith on fruit with a Jpouch for same reason, used to get stuck and took ages to pass and caused alot of discomfort, so I think i'll just give dessicated coconut a miss. Too chicken to try it as have had alot of blockages in the past and they were awful [ more ]
phdwithpouch When I had my ileostomy I ate a coconut macaroon (a dessicated coconut type not the fancy brightly coloured ones) on one occasion and remember it causing a fair bit of discomfort as it went through - had a hot bath to help things along and it came out of the stoma in big lumps of the stuff [ more ]
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J-Pouch ForumsOstomy & Skin
Anal skin irritation
E Eniak1980
Former Member I find as a guy the travel bidet with the small angled spout is best .I also find the travel bidets are easier to clean as they do get splash on them and you can put warm water in them and that feels great I also bought a one size fits all toilet seat bidet that didn't fit and I don't know how easy to keep them clean .the travel bidet is easy clean,warm water if you don't have an electrician and cheap [ more ]
Nancita @Chook- I ordered my sudocrem from Walmart (I’m in Seattle Washington - USA) under $12 and delivered in 3 days! Active ingredient is zinc oxide w/ some lanolin. Very nice but honestly you could buy the zinc and add lanolin and make it your self. But I’ll use it. Very mild effective and smells nice. On to water cleansing 💦 To further reduce butt burn. I now use water! For those who can’t add a bidet to their toilet, like me, I recommend Tushy’s travel Bidet! I bought a Pink one and it’s... [ more ]
Tony DeLorenzo Dear Eniak1980, We have identical medical issues. I'm always dealing with anal skin irritation. I've found that the best (non-irritating) wipes are Target's Fragrance-free. I take out about 25 at a time rinse them in warm water and ring-out any remaining chemicals. I've tried every wipe on the market and these are the best. After using the softest toilet paper that I can find, then I use the moist wipes, and then let it dry for a couple of minutes, and then cover the irritated area with... [ more ]
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J-Pouch ForumsOstomy & Skin
Confused! end ileo or barbie butt?
J Jayda
LORI726 So glad it is over Jayda! It sounds like everyone or almost everyone goes thru some sort of post op problem but you sound like you’re definitely on the right track! Hope you continue to enjoy your new buttless life!! [ more ]
Mysticobra Yes. Unfortunately the weight will find you. And it will go where you don't want it if you are lazy like me. Lol. I was down to skin and bone. I was skinny to begin with all my life. But then it went to the extreme. (128 pounds). I lost 50 pounds. I looked like death walking. Felt like it too. That's all in the past. Now I'm back up but still short of my normal weight and being a male it's all where it should not be. I should work out. But I did bring up that I'm lazy. Richard. [ more ]
TE Marie I'm jealous as my Barbie Butt was painful for months! I had to sit on heavy duty medical air butt cushions when driving too. Sorry you had to go thru all that other stuff as if the surgery wasn't hard enough on you. Don't worry, the weight will find you [ more ]
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J-Pouch ForumsOstomy & Skin
What happens after J pouch diversion?
LORI726LORI726
Mysticobra I just got two pairs of men's underwear from OS... I can tell they will not help as you said it looks like it will not support the bag at all. It's just a low pocket that goes along the whole front of the underwear. I thought it may have a actual pocket on one side or the other to stuff the bag in. Generic pockets I am gonna send em back for that price. Besides my wife bought medium. I am so skinny the smalls I wear are almost too big. So I know... Even though my wife insists I try them... [ more ]
TE Marie I understand Lori. I have fibromyalgia and when I have to wear a belt hooked to my bag or pants that mess with my bag it drives me nuts. I have a hard time with the plastic bag against my skin too. I bought some bag covers from someone on etsy. There are several folks there that make them. The best one I have is made out of a light flannel material. They cost is approximately $10. Lot cheaper than $25 for a pair of undies from Ostomy Secrets. I learned that those with fibro feel the same... [ more ]
LORI726 I am already wearing the crazy expensive ostomy secrets underwear and still feel the bag hanging....grrrr. Don't know why I am having such issues with this. Will keep trying new things and looking at the possible options. Thanks again everyone. I am glad you aren't' wearing grandmas Richard...hahaha [ more ]
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J-Pouch ForumsOstomy & Skin
R u happy?
AllyKatAllyKat
TE Marie Thanks for all of your replies. My surgery was just set for 8/31 and it's just for a permenant end ileostomy. All of your positive replys have made the decision easier. I told my surgeon that things are so bad I would even take my temporary stoma back. I had a very difficult time with it. Dehydration problems kept me in the hospital for 16 days after my first surgery. Thanks for asking the questions AllyKat. I hope you are feeling better. [ more ]
Saff HI Allykat I think I have had much more freedom since having my ileo - I'm much more able to do things and live an active life. I was toilet bound before and quite limited which was much worse. I think you'll find that you settle into a routine and it will get easier. I hope you find that. [ more ]
TE Marie Hi AlyKat - I promise I'm not stalking you around the group! Thanks for asking questions that I want to learn about too. Thanks for your helpful replies PoucherinTO and liz11. I'm trying to be proactive as an ileostomy might be in my near future as well. [ more ]
See all 11 replies...
J-Pouch ForumsOstomy & Skin
J pouch gone, hello Barbie butt
LORI726LORI726
1993SPouch ❤️
Randybw1 ❤️
Jayda I’m happy to hear that there’s no infection!!!!! Not happy about the mucus - I bet that’s what mine has been doing too. LOL I am only getting 1-2 day wear time because of leaks but it doesn’t look like output leak. It looked like a crazy amount of puss but then also a light brown/reddish colour that’s hard to explain. I have been so confused. I bet it’s doing something similar (at least in one spot that’s always been trouble). re hospitals - I have tried numerous times to change to somewhere... [ more ]
See all 17 replies...
J-Pouch ForumsOstomy & Skin
Pouch cover
SH shawne h
Lambiepie I don't know if she has any restrictions. I paid with my Visa card. You can ask her questions via her Etsy account before ordering. [ more ]
shawne h Thanks appreciate your reply does she take m/o or cheque? [ more ]
Lambiepie Shawne, sorry about your ostomy troubles. I hope you get them under control soon..... I ordered pouch covers per a suggestion from another member. I have five of them, they're handmade and very comfortable. They come with snap or Velcro closure. She sells them out of Ontario. The website is https://www.etsy.com/ca/shop/BagsUndercover [ more ]
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J-Pouch ForumsOstomy & Skin
digesting multivitamins ??
PouchomarxPouchomarx
skn69 I bought a pill crusher and use it when needed with certain meds and vitamins..Beware though, certain things do not like being crushed..They tend to upset your stomach especially certain vitamins (B's and zinc for me) so test them on the weekend. Sharon [ more ]
nikiki I chew my vitamin, or get a chewable. If pills are large, whatever they are, I always ask the pharmacist if I can chew them to increase absorption and decrease obstruction risk. [ more ]
Mysticobra It was suggested I take a multivitamin also. I think this has caused severe rear end burn. The worst I have had. It is continuous and does not let up. Most times I have BB it subsides some after a bm. But this just stays strong no matter how much I clean or grease. Has anyone else experienced this? I posted this elsewhere so you are not seeing double. Just wondering. [ more ]
See all 10 replies...
J-Pouch ForumsOstomy & Skin
Ostomy or a difficult pouch? Hmmm decisions decisions
Alli AndersonAlli Anderson
Alli Anderson WOW! Thank you for your support, it means a lot to me. I'm sorry I've been so late in my reply! Today I feel well but as you all know, that changes really quickly and most of the time without warning. I've recently been trying imuran and messing with my meds really sets my pouch (and butt) on fire. I've gone back to my regular regimen of 500mg cipro and 6-8mg immodium, 2 tabs in the am and 2 tabs before bed. I can only tolerate 50mg if imuran, too nauseating. I've been on cipro for 10yrs but... [ more ]
PoucherInTO Hi Alli Boy, I can empathize with you! I'm so sorry to hear of what you are going through. Sounds very similar to what I was experiencing. I had my j for 18 years, I'm now 34 and got rid of it Oct 2013. I have never been happier or healthier, all thanks to making the big decision to go perm ileo. My surgeon said "when the jpouch works it works well. But, if you're even thinking of going back to the ostomy that should tell you something". Quality of life and long term health and happiness... [ more ]
Lynne2 I'm sorry to hear about your situation. I suffered with pouchitis for more than 15 years before finally having surgery. I recently celebrated my one-year anniversary of having my j-pouch removed and a perm ileo constructed. Couldn't be happier with my decision! Wish I had done it years earlier. Still don't have a firm diagnosis of UC vs CD, but it got to the point when the diagnosis didn't matter. The darn pouch needed to get out -- even Remicade wasn't helping. I am med free and loving the... [ more ]
See all 4 replies...
J-Pouch ForumsOstomy & Skin
pouch-to-ileostomy : to leave the pouch or to remove it ? (that is the question :-))
A Arnaud
Saff I should also add that my diverted pouch is no longer so settled. It was ok for the first four years of disconnection, then in the last 1.5 years I've had increased discharge, pain and blood. Now looking at removal. [ more ]
Donna H These posts are from a long time ago but thought i would chime in. I have a loop ileo and my j-pouch had so much scar tissue around it that i could not be removed. I have had the ileo for 2 1/2 years and the leakage lately is terrible. I am looking for a solution but so far what the dr has ordered did nothing. I hate the thought of having this huge inconvenience forever. [ more ]
Pouchomarx is it ok to continue with a loop, or is it best to go with perm end? is one better than the other? if there is any chance that i may want to hook back up again should i stay with the loop? [ more ]
See all 16 replies...
J-Pouch ForumsOstomy & Skin
Can an ileostomy fail?
K Kushami
woodstock69 The biggest problem would be short bowel syndrome if you have had alot of small intestine used. [ more ]
BillV Fortunately, there are two procedures available for those with failed J pouches and problem ileostomies. These are the K pouch and the BCIR. There is a lot of information available on the internet and both have a high success rate and degree of satisfaction by those who have them. These procedures do not require having an external bag with its associated issues and the stoma is button hole in size and located 2-3 inches lower than the stoma for a conventional ileostomy. As with any major... [ more ]
Kushami I did read of someone (maybe on this board?) who originally had a stoma created, but his/her skin reacted so adversely to the bag/adhesives and became so irritated that a j-pouch was the only option. I wonder what would happen to someone with a failed pouch who then couldn't tolerate a stoma? Must be very rare. [ more ]
See all 6 replies...
J-Pouch ForumsOstomy & Skin
Rectal discharge
HH Holly HM
ljk Yikes! sounds like something is going on! Hope he can figure things out for you. I would have this taken care of before your connected. Prayers for you! LJK [ more ]
FaithHopeLove Is there any new info from anyone on this? I’m having the same issues and have a scope next week. I’m in a temp end ostomy and nothing is connected to my pouch so I shouldn’t be having this pus/blood coming out a ton my Dr said. [ more ]
GinLyn I'm waiting for a call from my GP to get a referral to a GI. Think that's the route I need to go. Unfortunately my surgeon is not in my city, and getting an appointment can take a very long time. As I've been well for quite a while, officially I'm discharged... But I think if I see the GI here, he/she will simply bump me up to my surgeon, which means a faster appointment time. Gotta know how to work the system! Hoping something else works other than surgery. Really don't want to do that... [ more ]
See all 11 replies...
J-Pouch ForumsOstomy & Skin
Loperamide Or Lomitol usage
TE MarieTE Marie
TE Marie My insurance quit covering loperamide and forced me to either pay for it myself or take the OTC imodium. I bite them in half to aid in their digesting as they were not fully dissolving. The loperamile was in capsule form and I think worked better. [ more ]
Isbella I know especially Lomotil that is the only one that my body responds to.. [ more ]
TE Marie The price of OTC generic Imodium has gone up by 3 times since the last time I purchased it [ more ]
See all 17 replies...
J-Pouch ForumsOstomy & Skin
My first bowel obstruction!
LambiepieLambiepie
Paul G. I've had several blockages which are the most painful thing I've ever experienced. Some have passed on their own and a few have required hospitalization - NG tube, pain meds, vomitting and near surgery. So I've decided that from now on, should it ever happen again, as soon as I get that first wave of blockage pain to take myself right to the hospital instead of being an emergency patient. Of course, I now eat so carefully by eliminating roughage almost completely. My plan is to never have a... [ more ]
Lambiepie TE, if you do try it, soak it very well before cooking and just use a smattering of the quinoa among the rest of the food. I'm still a little spooked and just threw out the leftovers. My husband didn't even want to eat it! [ more ]
TE Marie Thanks for the heads up. I was thinking about trying it..... I'm glad it passed [ more ]
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J-Pouch ForumsOstomy & Skin
jpouch to temp ileostomy: major anal discharge problems
E elooney
TE Marie Hopefully he is doing better. I was diverted to a permanent ileostomy 8/31/15. I had many chronic problems and my j-pouch never did work like it should. I didn't want another ileostomy as my temp one was a nightmare. My surgeon at Mayo's suggested excising it and going to a permanent ileostomy. I was not up to that reovery, mentally, so she agreed to divert to a permanent ileostomy. I don’t understand surgeons that won't let people have these surgeries. It is probably because none of mine... [ more ]
Saff Hi Elooney, I'm sorry that your partners discharge kicked in so early... I had my disconnection in early - and was good for 4 years or so, but now have constant issues with discharge sadly. And yes it very frustrating, I understand that there are no reliable treatment options. Enemas with fatty acid may help short term, but I'm not sure they are a long term option. I wish I knew the answer also. [ more ]
AllyKat My recovery for this temp Ileo has also been hard. Physically and mentally. It was done lapro so I was taken by surprise it was so hard. I also had a Ileo for a year 15 years ago so mentally that surprised me as well. I think some of the physical had to do with my age 63, and the inflamation. I too said no more surgeries but I so hate this bag, and now that I have this diversion stuff thrown into the mix, pouch removal oh no no no that's one surgery that I don't think I can ever do, so my... [ more ]
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J-Pouch ForumsOstomy & Skin
Wafer without tape?
S Starry01
TE Marie I ordered samples of Sure Seals too. I love Coloplast's but my skin broke out the last few times I used them and I love them. I cut off most of the flange of a Coloplast sample wafer, as they are too large, and the smile like shape ones were great. I haven't tried a true wafer without tape yet, just this self styled one. I'm currently using Convatec convex 2 piece ones. Good Luck everyone. [ more ]
Starry01 Thanks for the suggestion of sure seals. I've seen them but never tried them. So glad that works so well for you. I received the coloplast samples this weekend but didn't use them yet bc I have meetings and training sessions all week at work. My hope is to try the first one Thursday since I would be able to come home if needed Thursday or Friday. I may even wait to order some sure seals just in case. [ more ]
Mysticobra I am getting some from all manufacturers. I have to try different ones cause the skin is getting irritated. Not from leakage but I think from using the same thing all the time. It may be the adhesive used by different companies. I don't know. I am new to this and I think... Think trying different ones is the way to go to see what is the right most comfortable fit with the least irritation. But I really like the soft materials some are made of. Question for some who have wore an appliance for... [ more ]
See all 14 replies...
J-Pouch ForumsOstomy & Skin
SIBO and ostomy
AllyKatAllyKat
JLH my tea for settling tummy aches contains spearmint, ginger, peppermint and some other nice flavors. not that tea can combat sibo, but it is somewhat of a confirmation that mints and ginger are tummy friendly. my understanding was that one's sibo shouldn't be an issue if there is no longer a reservoir--that being either a j or k pouch. apparently one can also get sibo with a colon. from my experience--for what it's worth, as i am but one person and everybody is different--i never had sibo w a... [ more ]
LisaTX USA I use peppermint oil capsules to control the gas due to SIBO. I take about 8-12 through out the day. They work great. They don't eliminate the gas completely, but it certainly makes a huge difference. They are much cheaper on Amazon. [ more ]
See all 2 replies...
J-Pouch ForumsOstomy & Skin
For those who got rid of your J pouch
dgtracydgtracy
aka KNKLHEAD Thanks, Donna. So thankful for the forum and nice to know others with similar issues! I guess one question I might have now that I read so much here: Is it less of a surgery to revise a pouch OR remove it? I've read that removing is such a major surgery ... maybe easier to give the JP another shot, anyway? [ more ]
Donna H KNKL, I agree with you that the quality of life with an ileo is underrated. I suffered with a j-pouch for 18 years. I was on the toilet way too many times and the BB was just terrible along with incontinence. My sphincter muscles were badly injured at the time of the colectomy so there was no way I was going to get any improvement of my situation. I hung on way too long. I went in for a Kock Pouch last Oct and woke up with an ileostomy. I was shocked and depressed and angry since there was... [ more ]
Alli Anderson Oops, I mean Dr. Remzi! [ more ]
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J-Pouch ForumsOstomy & Skin
Advice needed - perm ileostomy surgery 11/14/12
R RoC
itsnotsherry Hi again Caty, I'm glad you can handle yours so well and hope mine get easier to deal with. I had 7 last time, surrounding my stoma. They just wouldn't respond. I only hope this time is easier. I don't regret my decision either. Just tired of pain one place or the other. I saw dr. Nogueras in December and he was so happy we went ahead with the surgery. I look and feel so much healthier. This too will pass! Thanks for the advice! [ more ]
Caty Hi Itsnotsherry, It's hard to remember, but I think I get about 2 to 3 occurrences per year--all little ulcers that I jump on with the Protopic. I know immediately when I have an ulcer starting because the area hurts to the touch and I can see my skin turning a bright red color past the flange white tape. It's probably going to be a chronic condition for the rest of my life but very controllable thus far with Protopic. It's the same as when I had my j-pouch. I could tell when I was having a... [ more ]
itsnotsherry Hi Caty, Thanks for your quick response. I put the protopic on it as soon as I saw it. When did you have it prior to december. I am wondering how often I may have to deal with this nonsense. I had such a difficult time gettting it to heal last time. I didn't respond as well as you did to the protopic and had a long stint on steroids as well. I was praying this was a one time thing for me. Thanks again! [ more ]
See all 26 replies...
J-Pouch ForumsOstomy & Skin
back pain
I itsnotsherry
skn69 itsnotSherry, I just got back from the chiro after a month of such intense back pain (lower back, right sub-iliac)...that I wake up crying...I have been taking 2 naproxine a day and now have added 1000mg of tylenol 2xs day to just get it under control. The pillows help a lot but if I move, even slightly I wake up in horrible pain so I gave in and called my chiro for an emergency apt...turns out that all of the lower back muscles are kinked again and she worked on loosening them up quite a... [ more ]
itsnotsherry Thank you Sharon. Your answer is very helpful! [ more ]
skn69 Itsnotsherry, I use 3-4 pillows to give my hips, back and shoulders the right support that they need to allow me to sleep...I use a long and dense body pillow that I 'hug' up against my body and throw my top leg over to ease the pressure on my sacrum/coxyx and that helps a lot for the lower back pain. I have a second that I keep low down on the bed that I keep between my feet (when on my side)to maintain the position of non-pressure on the lower back and put under my feet when I turn onto my... [ more ]
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J-Pouch ForumsOstomy & Skin
skin around stoma hurts. wafer never gets a good stick around it so it leaks a little
SweethoneySweethoney
ToddL Gmarie, I use the Cymed 1-piece with their extended barrier ring, in conjunction to the Cymed Seals. One of the nice things about the Cymed Seals is that you can order them pre-cut for the diameter of your stoma, so NO stretching necessary. Yes- sticky side down onto my clean, dry skin, then wafer on the 1-piece down over stoma, on top of the seal... I find them MUCH more comfortable than the Eakins, WAY less messy, MUCH easier to apply, more flexible and lower profile. I used to get 2-3... [ more ]
gmarie1208 Todd, I noticed you mentioned reply you use Cymed Seals. Which brand do you use for the rest of wafer/pouching system? Do you just stretch the Cymed Seal over the stoma then apply the wafer over it sticky side to the skin. I am not getting much wear time with the other barrier rings. [ more ]
ke353 What does that look like? I have a spot right against my stoma that started out as raw, red skin, then started bleeding, and now it looks sort of white. The wax and paste keeps wearing away there, so it keeps getting worse and more painful. I was wondering if it was something like that or just irritation. [ more ]
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J-Pouch ForumsOstomy & Skin
ouch!!
I itsnotsherry
itsnotsherry hwr..can you be more specific? I don't know what that is. [ more ]
Former Member I have been using a puffer! The kind they use for asthma. It works great. I have skin issues all the time, of one sort or another. This has been a God send for me. It goes on dry so the appliance sticks no problem. I use it until it heals up, stop, then as soon as it starts acting up, I repeat the cycle. Hope this helps. [ more ]
itsnotsherry Best of luck Selma. I don't know if life is good with it..I know physically I have improved, but mentally, not so much [ more ]
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J-Pouch ForumsOstomy & Skin
Temporary Stoma/Ostomy
S SJAN810
SJAN810 TE Marie, Thanks for responding! Sorry to hear you have dealt with similar issues. I'm wondering what you mean by a permanent ileostomy? How is it permanent if the plan is to temporarily divert from the j-pouch and go back to using the j-pouch? What's the difference between this one and the temporary one? I'm confused. Is it an end ileostomy where they disconnect the end of the small bowel from the j-pouch to use for the stoma and then reconnect it later? Thanks! [ more ]
TE Marie Did you discuss getting a perm ileo instead of a temp one? I had a permanent ileostomy while being diverted from my j-pouch. My surgeon spent 3 hours while in there lysing my adheasions/scar tissue. She did all this laparoscopic. I really didn't want a temp one as I had horrible problems too. Later on I did need to have my j-pouch removed as my pouch problems didn't go away. But shoot you don't have any of the problems I had. I take that back I had IPS too. I would ask if s/he is going to... [ more ]
SJAN810 JHendrix, Thank you for your input. I’ve only been communicating with my doctor over email since August and will probably have to wait until I see him in person to get a better explanation. My appointment in August led to several tests, most had normal results, ruling out inflammation, Crohn’s disease, pouchitis, strictures, etc. The last test I had done indicated that I have IBS. I had an appointment scheduled to follow up with my doctor about all of this but I’ve had to reschedule several... [ more ]
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J-Pouch ForumsOstomy & Skin
Ileostomy recommended
LoriBLoriB
Kushami ❤️
Kristin-in-Calgary I, too, opted for a permanent ileostomy after 7 years of j-pouch hell, with constant pouchitis, cramping, pain, and general misery. I've done much better since I got my ileostomy. I was diagnosed with Crohn's a few years after my IAP surgery. The same thing you're describing above happens to me sometimes. I describe it as telescoping out, but I think the medical term is prolapsing . Mention it to your ET nurse, surgeon, and/or gastroenterologist when you see them and they can let you know if... [ more ]
fisherdan I chose a permanent ileostomy after 14 years of hell with a jpouch! I was in constant pain and cramping and trips to the bathroom! I exhausted all use of medication to bring into remission my Chrohn's! Now 3 months after surgery, I am 80% pain free and though i still struggle with blistering around stoma, the issue now is that suddenly my stoma has about tripled in length! This does not bother me but I wonder if this is normal! It did stick out maybe a 1/2 inch and suddenly a week ago I... [ more ]
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J-Pouch ForumsOstomy & Skin
Feeling blocked
F Fosty
Lambiepie It might help to get into certain poses - cat/cow while on hands and knees, spinal twists while sitting down. It might help move things along. I hope you’re feeling better by now. [ more ]
maddie18 Get yourself Super Enzymes by Now. [ more ]
JHendrix How is it going now? Hopefully things didn't block. Sometimes when I feel that pain around the stoma I massage all around it. I'm not sure if it really helps but it seems like it helps to push things through that might otherwise get stuck behind the stoma. [ more ]
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J-Pouch ForumsOstomy & Skin
Swimming in ocean or pool?
J Jmitch
Cinder23 I have a 1 piece hollister and I’ve had it submerged for 6 hours in a lake. No water in no poop out. Also been in hot tubs and hot springs with it. I just change it after. I can’t speak about the 2 piece though. I don’t cover it but to each their own. Maybe just a tight T-shirt or something? [ more ]
See 1 reply...
J-Pouch ForumsOstomy & Skin
One piece or two piece systems?
J Jmitch
Kushami ❤️
Kristin-in-Calgary I've used both 1-piece and 2-piece and found reasons to like them both. It's harder to center the flange of a 1-piece since you have to look through a little window, but once it's on, I like that the bag can't fall off, as it occasionally and catastrophically does with some 2-pieces. I also like the lower profile, meaning a 1-piece doesn't stick out from your abdomen as far. However, I have had to keep trying new systems to find one that works and am currently back to a 2-piece that is... [ more ]
TE Marie I found one piece systems work best. I personally don't like filters so don't have them in the bag. I empty gas from the bottom. Richard is right. I prefer clear bags on the front as it helps when changing. I use a convex wafer and have tried about every brand. Start out with what the stoma nurse sets you up with. I also changed it myself at the hospital so I was good with it when I went home. I hope all goes well. [ more ]
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J-Pouch ForumsOstomy & Skin
heat
M Momma
n/a Heat hasn't upset my barrier too much, but when I get itchy under the tape part of it, I squirt a tiny bit of nasacort on my fingers, wipe it around the itchy area, and continue with my normal barrier application. I usually do this maybe twice a month. I picked up this tip on another ostomy site, and it works great for me. I checked 1st with my dermatologist who said it wasn't a fungal or yeast thing. Maybe your son could run this idea by his ostomy nurse or dermatologist? [ more ]
PouchLogic I found after having a jpouch I don't tolerate the heat as well as I used to in general. [ more ]
See all 2 replies...
J-Pouch ForumsOstomy & Skin
yuck! and does anyone have any ideas?
GinLynGinLyn
JohnG. ❤️
TE Marie The Mayo Clinic site says this happens with auto-immune diseases including IBD. Is that what your doctors said? I hope it clears up soon and well. [ more ]
GinLyn Hello, all. Sorry again for the delay! Simply too much going on. It turns out I have a pyoderma, so am being treated with topical steroids and such. It had actually closed up last week so the doc dropped the steroids to every other day, but this past week -- of course, while on holiday! -- it opened up again. So back to the daily regimen, and phoning the doc on Monday for another appointment. Anyone else deal with one of these? Gin [ more ]
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J-Pouch ForumsOstomy & Skin
Pelvic Floor dysfunction and UTI'S
TE MarieTE Marie
TE Marie I am now self cathetorizing before bed nightly. They did an ultrasound after I urinated and there was too much urine left in my bladder. They are not sure of the cause. I think it is due to several of my medications that list urine retention as a potential side effect. One of them is Loperamide, prescription Imodium. At least the specialist is not trying to add a prescription. [ more ]
TE Marie Good list Sharon. Unfortunately I know and or do most of what you write about. I too had them more when younger but the problem now is more functional It's been almost 2 months without an infection so am hoping it is under control now. I am still using up my vsl#3 too. I am spreading one daily packet over many days as I am no longer on antibiotics for my former j-pouch. I discovered that several of my medications can contribute to the problem so ladies read all of the warnings on your ... [ more ]
skn69 I don't get them very often...I used to when I was much younger but I had a great obs/gyn who gave me a few basic rules...only cotton undies, no bubble baths or soap in the tube or any type of detergent while I am in the water (I either wash first then take a bath or the other way around...not even shampoo in the water...it will change the PH level in the water and send me strait into a UTI); I use only sea salt with a few drops of essential oils if I want to perfume my tub, change undies... [ more ]
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J-Pouch ForumsOstomy & Skin
Probable reversal
heverhever
hever Thanks Bunny Lady, yes it is a serious decision, but the pain the J pouch, or rather the rectal area is causing makes me want to rip it all out right now. If the cause of the pain can't be rectified then i'm reversing, real sick of all this drama after years of pain. Its great to hear the products have improved!!! I think like you that I have waited too long for reversal, putting off going back to the illeo,but unless I get some good answers next week from my specialist I want to be reversed... [ more ]
Bunny Lady I had J Pouch in 1994, lived with pouchitis for about 18 years. Frequency and pain became unbearable and in 2014 had reversal to permanent ileostomy. It took me about about 1 year to adapt. I also had ileostomy (temporary) in 1992 and the products have dramatically improved since then. It's a permanent and very serious decision to make, not to be taken lightly. It has changed my life, I waited too long to have the reversal. [ more ]
hever Thanks Jan, hopefully the reversal will be successful, worried bout getting a fistula like some people have but can't really see what choice I have now. Anyway i'll see what the specialist says in a couple of weeks Heather [ more ]
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J-Pouch ForumsOstomy & Skin
Question
MysticobraMysticobra
Mysticobra Thank you. I can go 4 to five days without a change but I am gonna do a few 4 day changes just to look at it and see how the healing is coming along. Also to take pics for the surgeon to see. I don't want to change bags in the office. I will be in a hurry and when I am I will leak or something. The skin is not really irritated per say. I can feel it but as you can see in the pic it's just pulled away. I will make sure it's nice and clean before I put the wafer on. I really don't have powder... [ more ]
Lambiepie Richard, glad to hear you are adjusting well! My understanding is that you only use powder if you're having a skin issue. Don't forget to put skin barrier liquid over the powder and always end with the liquid, not powder. Also, change more often if skin around stoma is irritated or broken down; change less often if skin under barrier is irritated (because you don't want to be ripping tape off irritated skin.) In January, I will have had my perm ileo for a year and I am still discovering what... [ more ]
Mysticobra Thanks Caty. I don't think I will worry too much about it now then. I use the Hollister soft wafer. I find them very comfortable and hardly noticeable. I think by the time it heals I won't or I will forget I m even wearing it. Right now I feel where it is bit tender. That's all. I talked to the surgeon about it but she was not too concerned as it is as you can see not all irritated and red or anything. So it's good to know it will be OK. I have to give it time. So far I am happy with my... [ more ]
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J-Pouch ForumsOstomy & Skin
what cream or paste to use ? ? ?
Mdz122Mdz122
TE Marie Hi Mike, I'm having a difficult time and am wondering if the Ilex worked for you. Does the skin around anyone's stoma improve using Ilex. [ more ]
Jan Dollar This really sounds fungal. Rather than make things worse, I'd see the doctor and get something prescription. Ilex is great for healing excoriation from leakage (like super diaper rash), but if you have an infection, you need something else. I'd call the doctor. Jan [ more ]
Mdz122 Originally Posted by Jan Dollar: Maybe you need to stay away from those barriers that lock in moisture as much as locking it out. Try an antifungal powder like Zeozorb or Caldesene. But, if you are really wicked excoriated, then Ilex is your go-to. Jan Jan, I tried the Caldesene powder and it didn't seem to help much. I went back to trying Destin again because I was told the zinc is really what you want. Everything down in my crouch area is red, there is no normal looking skin. All of it is... [ more ]
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J-Pouch ForumsOstomy & Skin
Brava Elastic Barrier Strips - FREE
B BLECCE
Holyfield47 Originally Posted by BLECCE: Hi Holyfield - I just got another free sample in the mail today from Coloplast...it's 2 SenSura Mio samples (2-piece Flex Drainable Ostomy Bag). Would you like it? If so, just message me your address. [ more ]
BLECCE Hi Holyfield - I just got another free sample in the mail today from Coloplast...it's 2 SenSura Mio samples (2-piece Flex Drainable Ostomy Bag). Would you like it? If so, just message me your address. [ more ]
Holyfield47 Thanks for the advice....I'll call them now. [ more ]
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J-Pouch ForumsOstomy & Skin
Ostomy Pouch Covers
P PoucherInTO
PoucherInTO Hi Lambiepie! I am so happy that you are getting a lot of use out of your covers I have a bunch of them too, and you are right, they are great at keeping sweat at bay - I hated the feeling of the bag getting warm against my body. I hope all is well [ more ]
Lambiepie I just ordered three more covers. I can't say enough about these, especially in the warm weather. They keep the sweat away from my bag, fit beautifully and don't create a lot of bulk as the material is thin cotton. Love them! Thanks, PoucherinTO, for the info. [ more ]
Lambiepie Clever1, anything that makes our ostomies cool is good! [ more ]
See all 14 replies...
J-Pouch ForumsOstomy & Skin
Probiotics with No J-Pouch?
Lynne2Lynne2
Lynne2 Wow - that's a surprise that Dr. Shen doesn't recommend them. I'm beginning to think that fermented foods and yogurt might be the better approach. It seems like focusing on bolstering certain strains could lead to an imbalance. And how to know which strains? On the other hand, I have noticed improvement in the past when I've used them. It intuitively makes sense to me to feed the good so they an overpower the bad. and then theres the question of prebiotics. Hmmm. . . If I come up with any... [ more ]
liz11 I don't bother with probiotics. the meister shen doesn't believe in them. They cost too much. And when I tried them in the past, they just increased gas massively. With that said.. I do eat healthy, keifer, yogurt, etc... [ more ]
Lynne2 I think I might have asked too many questions or sounded too confused in this post. Hope this makes more sense: Does anyone on here with an ostomy take probiotics? If so, what kind? Thank you. [ more ]
See all 3 replies...
J-Pouch ForumsOstomy & Skin
ostomy is almost all liquid, still absorbing nutrients?
dgtracydgtracy
Lambiepie No problem. I had been following your posts about your latest j-pouch adjustment. Hope it's smoother sailing for you by now. [ more ]
dgtracy Apologies Lambie i just saw this pop up again, i had my ostomy reversed again on January 26th. it took awhile but near the end it started to thicken again. [ more ]
Lambiepie Dg, how are you feeling? Has your ostomy output thickened up at all? [ more ]
See all 6 replies...
J-Pouch ForumsOstomy & Skin
Lomotil
dgtracydgtracy
Mysticobra Hi. I can take one lomotal and it plugs me up. I don't use anything to thicken and I feel as though I get plugged up. I eat a banana and Apple everyday and it works to thicken but seems like when I bm only some comes out and it just stops when I know more is there. Weird. Just have to experiment with it all to see what is best for you. I still am experimenting with things at close to a year after. Takes time. [ more ]
dgtracy I dont believe it has reoccurred. i have even gone up on the dose and have not experienced the same thing as before. i was taking the lowest dose which was 1 pill every 6 hours..now with this cold i have im doing 2 every 6. Thanks Jan : ) [ more ]
Jan Dollar The main reason not to take both is that it is like doubling up on the same medication. But if you are alternating small doses, it should not be a big deal. You might have felt dry and blah due to a sensitivity to the atropine in Lomotil. Imodium does not contain it. It is a very small dose in the lomotil, but some people are very sensitive to it. Could just be coincidence too. If it recurred with further lomotil dosing, you could be more sure. Jan [ more ]
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J-Pouch ForumsOstomy & Skin
Jeans
LHettiLHetti
skn69 I'm wearing a fitted, 3/4 sleeve, scoopneck black t-shirt today from the maternity colection. It looks fitted but does not cling, has some sheering/pleating on the front sides to created a loose effect over the tummy and the front is longer than the back. Kind of almost to the top of the tights...wore it with flat black sneakers (Sexy Guess ones), Black jeggings and a little trimmed cardigan over it...my perfect work uniform. Nobody knows that I have a kpouch even when it is uncooperative,... [ more ]
Lambiepie Ohhh, early pregnancy bathing suit. Brilliant. I'll bet that look you described yourself wearing looked fabulous! I tend to wear looser, bohemian tops anyway, so it works perfectly for the "ileo" look. I also bought a couple of Bebands from Target in preparation. I'm planning ahead more this time as this time is permanent. No muu muus for us! [ more ]
skn69 Lori, I love my flea/farmer's market...(no, there are no real fleas...I hope)...I get all sorts of end of season stuff for peanuts... The maternity unddies and bathing suits were wonderful...they were sort of like for a 4 -6 month pregnancy and not 9 months with triplets so they worked great...I still use them when I am very bloated or swollen. Vanity fair and Olga also make tons of spanx type undergarments that I find fabulous...I use 'slimming' leggings that massage my legs/hips with... [ more ]
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J-Pouch ForumsOstomy & Skin
One week out - Jpouch removal - advice on bum pain...
ClickyClicky
LHetti Welcome home! Keep us posted on your recovery! [ more ]
Clicky Thank you so much for your replies - it really helps to hear from people who know! I'm home now! My bladder finally woke up after 10 days and the pain is more bearable but it still hurts. It's good to hear that it stops eventually. It sure is nice to be hone - that was brutal - but completely worth it. . [ more ]
LHetti Clicky, I hope you're glad to be on this side of the surgery. Yes, the recovery is rough, but by week 4 I was feeling so much better. I was on 4 oral pain medications and that seemed to handle the pain for those first four weeks. Are you taking a lot for the pain? I even had a lidocaine patch to stick to my bottom to even take the edge off the pain that way. My stitches just dissolved, but there was a knot or something that really bothered me in the process. It too dissolved as the weeks... [ more ]
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J-Pouch ForumsOstomy & Skin
Surgery on Monday
K kennyboy
Holly HM Heading for surgery October 3rd. So very glad to hear you did well. Thanks for the encouraging words. [ more ]
Clicky Kenny, thank you for writing your story - I'm so pleased you are home now. I hope everything continues to heal well. [ more ]
Lambiepie Kenny, great to hear that all went well. I'm in the "anticipation of surgery" stage and getting nervous, so to hear from you is reassuring. Continue to heal well. [ more ]
See all 7 replies...
J-Pouch ForumsOstomy & Skin
permanent ileo advice
LambiepieLambiepie
Lambiepie This is all very comforting to hear. Liz, thank you for saying that this should be presented as a viable option, not a last resort. I've always gotten that impression from my surgeon. I also wish he had finished our initial conversation four years ago with, "BTW, think hard after surgery number one. If you're satisfied, it's a whole lot easier to maintain that end ileo than to remove a j-pouch once it's created." No, he waited until I came back to discuss removing my difficult pouch to tell... [ more ]
Lynne2 I totally agree with Liz. She was one of my inspirations for doing the surgery! [ more ]
liz11 feel free to pm me too. i did it 27months ago. And despite complications out the whazoo for over a year afterward... it was by far the best decision I have ever made regarding my medical care. It is sad that this is presented as a last ditch effort to patients when it really should be presented as a way to have a great quality of life.. and not waste your life away.. trying to play the jpouch game. really.. pm me if you would like. [ more ]
See all 18 replies...
J-Pouch ForumsOstomy & Skin
Showering
EricEric
Cataja I take the bag off and just shower with the wafer on...been doing this forever...no problems at all. [ more ]
AyrishGrl I typically put a dry bag on after I get out of the shower. It feels cleaner that way. If I am just being lazy around the house that day I will blow dry it so it doesn't stay soaking. [ more ]
Lynne2 If it's going to be just a pretty quick shower, I don't use anything, then wrap an absorbent washcloth around my bag when I get out and blow-dry on cool setting, if needed. If I'm taking a longer shower (I admit to indulging in long hot showers sometimes!), I like to fold up the bag and wrap plastic wrap around my waist to keep it drier. That is probably not necessary, but it makes me feel more comfortable because the appliance is less wet after the shower and easier to get ready to dress... [ more ]
See all 7 replies...
J-Pouch ForumsOstomy & Skin
itchy, smelly, and losing more weight
DH Donna H
liz11 hot liquids can definitely make fluids gush out of you. So tea... maybe cut back on that for awhile. Also plain water can make things gush. Try drinking only a true WHO electroylyte solution all day every day for a week or so and see if things change for you. Also try to reduce your sugar intake, that may help with the gas situation. [ more ]
JillM The gas gets better over time. THe liquid issue gets better too, but you might want to try Immodium. Take two at the same time each day for a few weeks. You will find that things thicken up and slow down. [ more ]
Donna H Hmmmm, let me look into that. I don't know why I have gas since I am still so careful in what I eat. And, btw, do liquids just flow out of you after you drink them? I had a lot of water yesterday before some blood work. I had to empty every half hour for a couple of hours and it was pure liquid. It sure cleans the pouch however. I love tea, either herbal or decaf, and that stuff runs through me too. Perhaps it's just because I am 3 1/2 weeks post op??? There's still lots of stuff to figure... [ more ]
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J-Pouch ForumsOstomy & Skin
Vitamins, Clothes, Appliances
Lynne2Lynne2
Lynne2 Thank you for the feedback, Selma. I actually just got one of those wraps and am looking forward to wearing it for the first time tonight. I totally agree about the decision to go perm ileo. Looking back, my husband and I both agree that keeping the ileo instead of going for the j-pouch connection would have saved me from 15 years of discomfort, increasingly potent drugs, lifestyle limitations, emotional stress, who knows what pouchitis for 15 years did to the rest of my body, and etc. etc. [ more ]
Selma I wear the Ostomy Secrets wrap. The pocket holds the bag nicely and it smooths the bag out so I feel more confident it isn't bulging as it fills. Watch their site for one of their sales if the price bothers you. I wear a two piece and can wear fairly tight fitting pants with confidence, just empty frequently. With time you will be more confident about the fit, etc. Getting rid of my j-pouch was the best decision I ever made, wish I had it from the very beginning, live and learn. [ more ]
Lynne2 My goodness. . . more very valuable tips. I'm telling you, I don't know what I'd do without this group of experts. As I mentioned to Pluot (Liz) in a pm, it is so funny to me that we are complete strangers and yet we turn to each other with very personal questions about things like undergarments! So, thanks to your advice, I am more on track with how to proceed. I am in the process of getting samples of various bag types. I'm getting the boy shorts tomorrow morning and will be ordering the... [ more ]
See all 15 replies...
J-Pouch ForumsOstomy & Skin
chiropractor
I itsnotsherry
skn69 Itsnotsherry, It would seem normal that it is on the opposite side of the ileo..we tend to compensate with the oposite side of whatever hurts to help us feel relief... My right hip hurts terribly and my left knee doesn't like it at all (neither does my left ankle)...my problem is sacrolilitis until further tests...and just like for the arthritis you must keep those joints well oiled...walking, swimming, climbing stairs or hills or and repetitive movements that keep the circulation going...I... [ more ]
Jan Dollar It can take up to ten days Or longer for intra-articular steroid injrctions to have a full effect. Plus, they don't always work. I've had those injections in my wrists, elbows, knees, and shoulders. Sometime they are useful. Sometimes not. If inflammmation is not a main component causing the pain, it won't have as much of an effect. Either way, it is not like an instant pain relief, other than the short-lived numbing from the anestheic that is mixed with the steroid. Ideally, it improves... [ more ]
itsnotsherry It seems I have arthritis in my hip and not sciatic nerve issues. They gave me a shot of cortisone in the hip joint, but 5 days later, still no relief! It is the exact opposite side from my ileostomy. This makes me nervous. Could something about my anatomy be causing the pain? [ more ]
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J-Pouch ForumsOstomy & Skin
lots of probs w eakins and bag changes
D Danita
gmarie1208 Have you tried Convatec durahesive moldable convex wafer since your stoma is weirdly shaped. Call them at 1-800-422-8811 for samples, they are not stingy, they will send you four to try. I never liked the Eakin. I use the Brava moldable ring by Coloplast. Lots of folks also like the Adapt barrier ring. Instead of using the whole ring I cut in half make a circle ring of it and shape it into the wafer. I have an end ileo and it has taken me almost 9 months to find something that halfway works. [ more ]
rncrowdis My husband recently had an ileostomy and the area just beneath it developed what looked at first like a split in the skin. The doctor said it was normal, but it is now bloody and we are having leaks because the paste doesn't stick well to it. We tried putting stomahesive powder on it, dampening it, reapplying and dampening three times to make a crust, but the area is fairly wide and we aren't sure what to do. Don't want to keep changing bags..they are so expensive. We will call the osteo... [ more ]
D. Nocerino I had the same problem with my loop ileo. My stoma was very flush with my body and had the same issue. As soon as I told the stoma nurse at the hospital about she gave me a new appliance with a riser, which is like a special ring to the flange that helps the stoma stick out, and it really helped. I also had issues with changing and output. I waited 2 hours after I woke up, like if I woke up at 8 I would do the change at 10, and it behaved for a bit. It was to a point that I was so quick and... [ more ]
See all 6 replies...
J-Pouch ForumsOstomy & Skin
Gas in the bag
S Selma
Lynne2 I swear by Osto-EZ-Vents! I haven't heard of the pin-hole trick before, but I would be too chicken to do it for fear of leaks. The vents I use are very simple to use: attach to outside of bag, poke a hole, then close the top (which is similar to what you'd find on a beach ball. Those vents have saved me on a number of occasions. Before I found them, I had accidents when opening my bag if it was filled with gas and stool. There might be other brands out there with a similar concept. I use the... [ more ]
Donna H For the odor, I am using Cepacol mouthwash that I put on a square of TP (or half of one) and stick it in the bag. It works very well so I do this every time I empty. My home health nurse told me about this and she also told me about *****ing the top of the bag for gas. It does seal itself off so you would have to do it again throughout he day. It is so helpful to share these little tidbits to make our lives easier. What might work for one might not work for the other but every idea is worth... [ more ]
Badplumbing Over on the ostomy forum of the healingwell forums this topic just came up too and someone posted that they add this after market vent to any bag- it's called the ostoEZvent and, as an ostomate to be, I can't say how quick and easy it is to install, but the poster said it works great; it is unfiltered so of course one needs to be in a non public area when you open the vent: http://www.kemonline.com/content/home/ [ more ]
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J-Pouch ForumsOstomy & Skin
VERY RED AND SORE UNDER MY ILEOSTOMY, SUGGESTIONS?
PouchomarxPouchomarx
Ljz Hope things are better for you now, but just wanted to say that Ilex is indicated for ileostomies. You put it on as thin layer- more like wax than cream. It sticks pretty well even on damp skin. Good luck. I did just order from Ilex US. From ilexhealthproducts.com. There is more info on website. Laurie [ more ]
Pouchomarx doubt its an allergy, otherwise i would think it would be sore and red all arounfd the stoma, its just underneath the stoma. [ more ]
liz11 you might be allergic to the tape on the hollister wafer. Change more frequently for now. Also get some other wafers too try. Tape free. Even other manufacturers wafers. My skin couldn't tolerate any of the stuff with tape already on it. another thing would be to try and figure out if you are getting a leak somewhere. So when you take the wafer off look at the underside of it and see if there is a particular zone that leaked. also could be that brava ring bothering you. Thats pretty tough... [ more ]
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J-Pouch ForumsOstomy & Skin
Major accident for son's friend at sleepover
MB Mountain Baker
CJB You said it, Sharon! [ more ]
skn69 I am a big-mouthed busy-body who cannot stand to see people in pain and would not have a problem going up to the mom, inviting myself in for a tea and say, 'you need help.'...and then giving her all of the help that you can to make her and her son's life liveable from now on...I have yet to meet a mother who would refuse help for a suffering child and this kid is suffering. If he cannot live a normal life, is leaking and stinky then his life is pure hell. And he cannot be happy that way. [ more ]
fq i agree with Jill. Also, it sounds like they could use extra support and tips on how to make things more manageable....like when you mentioned the house was reeking with odor, he could use drops in his pouch. i even heard tic tacs help, which would be safe for the kid to drop in the pouch. maybe he needs a better ostomy system to help with the leakage so it is reduced, like wear a belt at night. Maybe he needs to also empty more often or set his alarm in the middle of the night so his bag... [ more ]
See all 4 replies...
J-Pouch ForumsOstomy & Skin
Multiple Stoma Sites
FM Former Member
Kushami ❤️
n/a If you go back to an ileostomy, an ostomy nurse will evaluate your stomach and help you determine what might be the best location for your stoma. I personally have had 4 stomas, and they've all been in the same site: #1 was an end ileo in '93 for colectomy; #2 was a loop ileo for jpouch; #3 in '17 was an end ileo when my jpouch was disconnected; and #4 in '18 when the stoma was unexpectedly revised during jpouch removal surgery, due to "kinking" behind it. Like you mentioned, the stoma is in... [ more ]
Randybw1 I'm no help here, I've had one on my right side and now my permanent one on the left side. There has to be someone that's had this done. [ more ]
See all 2 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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