Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsGeneral Discussion
From Jpouch to perm ileostomy
NoGutNoGut
Jan Dollar Before assuming this is pouch failure, I'd consider a course of Cipro or Flagyl for pouchitis or bacterial overgrowth. While uncommon this soon, it is not unheard of. You'd know within a couple of days if it is useful. For me I had a huge improvement of symptoms within hours of my first dose of Flagyl. Bowel slowers and diet modifications did nothing when I had pouchitis symptoms. Antibiotics were like a miracle. Jan [ more ]
NoGut RE5, Are you familiar with the magazine, "The Phoenix"? You might want to google it. It's the official magazine of the United Ostomy Association of America. I believe it publishes about four additions per year. I believe the cost is around $10.00 per issue. You will find many inspirational articles in it regarding ostomates and how they are accomplishing great things. Many of the individuals these articles pertain to have accomplished wonderful challenges physically. It seems their ostomies... [ more ]
RE5 I just recently went back to the ileostomy. I'm not gonna lie my mind is still in a bad place. I'm 24, a male, used to being in very good physical shape and now I have to worry about a bag for the rest of my life (most likely.) Good news however, no more stomach pain, immense cramping, and I'm not having butt burn every other day from the pure liquid stools. I suppose we just have to make the best of our crappy situation. [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Post Takedown-When you felt comfortable to be out
ItsanewworldItsanewworld
Sharon W I am 16 days post takedown. I rode in the truck 5.5 hrs yesterday stopping twice to use restroom. I didnt eat until 30 minutes out in case it caused me to have the urgency. That and the searing pain(butt burn) have still been my issues. I have problems if i walk too much. I have explosions from time to time, so Im still wearing pads. I hope to feel confident soon but i think at this rate it will be 6-8 weeks before that happens. I have been taking immodium anout 6 a day. I think it thickens. [ more ]
Former Member I had my takedown surgery on the Thursday and left hospital by the following Tuesday; I had a 4 hour train journey home. During my journey home, I only required one toilet visit on the train, since the last, which was at the hospital. My biggest difficulty was the discomfort and lack of mobility due to the healing of my old Stoma site. Getting up and sitting down was really awkward but once up, my mobility was ok, no issues walking or shopping. My surgeon suggested I take Immoduim but also... [ more ]
Scott F For many (most?) people the first 5-6 weeks after abdominal surgery are simply about recovery: regaining strength, adjusting to your new plumbing, etc. Some bounce back more quickly. That being said, sometimes a problem worth treating (with more than patience) crops up. Have you called your surgeon? It's possible you have a spasmodic pouch, usually treated with Bentyl or Levsin. Mostly, though, it's just still hard at two weeks post-op. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
What about healing our minds?
InbetweenerInbetweener
skn69 I tend to agree with Jan here...being sick from a very young age, I personally believe, changes your outlook on life. I was born sick and had my first 6 surgeries between age 2 -3....had another dozen by age 14. You kind of stop fretting about stupid stuff after that. Your value system is more grounded, more 'real'. When in Sick Kids Hospital, I spent a lot of time trying to help other kids who were worse off than me...those that couldn't walk, autistic kids (yes, in the 60's and 70's they... [ more ]
Jan Dollar This is a great topic. How we cope is an extemely important aspect of our lives. I don't know if it is because I was diagnosed with UC at age 15, or if it is just part of my innate personality, but I always seemed to be able to just accept how things were and not dwell on what "could have been if only..." I actually was grateful for the challenge, because it forced me to learn early on how to prioritize and not sweat the small stuff. I was still pretty much of a perfectionist on what I chose... [ more ]
Lambiepie First, Yoga and meditation is what centered me pre- UC, during my jpouch days and since my perm ileo surgery a year and a half ago. Second, when I find myself getting down at all, I try to remember to wait to a "shift" - nothing stays the same, it always eventually changes, so I know to look for and wait for that....I'm way more grateful for what I DO have in my life than I used to be and I have a lot less patience for people who complain about petty things (I'm working on letting go of... [ more ]
See all 15 replies...
J-Pouch ForumsGeneral Discussion
blood test
Paul HPaul H
StarryNight RachelRaven, My blood tests also came back with extremely high B12 level. I would be interested in an explanation as to how this may indicate lack of absortion, if you get a chance to ask your GI Specialist. Also, what is the name and dose of your B12 supplement? Thank you! Laura [ more ]
rachelraven As for high B12, by IBD GI specialist said in J pouches, weirdly high numbers can show lack of B12 absorption. I'd have to ask for the explanation again, but that's what he said. He put me on supplementation when he saw my high number. [ more ]
Paul H Thank you, yes it's time to cut back, might give me more energy too! I only abstained for 12 hours so all in all I must be in good shape. How lucky I am. Paul [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Low iron questions
clz81clz81
rachelraven I tolerated oral ferrous glycinate but not oral ferrous sulfate in the past. Be sure not to take "enteric coated" meds/supplements; we don't have enough time for them to always completely dissolve. As for labs, a panel should include not only iron, but ferritin, iron binding capacity, and transferrin, too. They complete the picture on iron stores. Check out dark black strap molasses for iron content. One brand I took had 25% daily recommended iron per tbsp! It *is* sugar, though,... [ more ]
boy's mom I recently learned from a hematologist that you can take a test to see if you are even able to absorb iron orally. My son was able to absorb it but not as fully as some people. You absorb iron in your duodenum so J pouchers should be able to absorb orally. However if you have inflammation that can get in the way of absorption. We were told liquid iron taken twice a week is best way to absorb and you have to be careful about too much iron as that will end up being stored in you liver and you... [ more ]
Inbetweener Wow I'm so surprised that anyone with guts like ours can tolerate iron supplements of any kind?! I'm in the UK, and am about to get an iron infusion for the first time. After many months of low iron levels (and years of it really) and never getting anywhere with tablet or liquid supplements / tonics etc, the docs finally agreed to let me have an infusion and I will probably push to keep having them long term. But it's taken a lot of fighting to get it, with a dozen doctors all trying to give... [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Jpouch causes Crohns?? What??
PouchomarxPouchomarx
Kara Fred The diagnosis played a role for me in treatment and surgery. In my humble opinion, diagnosis can be important. But everyone has a different experience & thought. That is why we are all here- to share! Thanks to all of you- [ more ]
CTBarrister For the benefit of everyone here is a quote from the pathologist's report with regard to my pouchoscopy on 6/20/16 and biopsies which I got a few days ago via email on the Yale Health Network: "We note the long standing clinical history of ulcerative colitis status post subtotal colectomy with ileal pull through and ileal pouch. The patient suffers from antibiotic dependent pouchitis. The distinction between chronic pouchitis and Crohn's disease is challenging and rests on the totality of... [ more ]
Scott F CT, the diagnosis doesn't play a significant role in your situation, partly because it can't be known with any reliability. The same is true for me. It does play a significant role in other situations. [ more ]
See all 35 replies...
J-Pouch ForumsGeneral Discussion
Throwing in the towel
RE5RE5
Angie Wilson So sorry you are going thru this. Many times I've thought that - will this ever get better? The longer you live...the more ups and downs....I really hope it does get better and that your body and you adapt to the new situation. I know there are no "right words" to say to make it any easier. Will be thinking of you and hoping you get improvement very soon. [ more ]
Scott F Unfortunately loop ileostomies can be troublesome. I hope it calms down for you. [ more ]
RE5 Loop ileo. I'm sort of freaking out at this point. One of the big reasons I decided to let the pouch go was because I was destroying my bed everynight for a year plus. Now I'm waking up in a mess again .... This is one of those times where I seriously wonder if things ever get better. [ more ]
See all 42 replies...
J-Pouch ForumsGeneral Discussion
campylobacter
TrailerParkHeroTrailerParkHero
claire I hope he is fully better now. It seems like a particularly dangerous and nasty bug!! [ more ]
boy's mom My son had campylobacter last summer and lost 6 pounds in less than a week. It was awful. Cipro made him better. [ more ]
claire Hello, I'm so glad the Flagyl has helped you! It has taken 14 days of pain and literally losing so much fluids through watery diarrhea.. I've gone to ER three times for a check up and fluids but just been mainly drinking rehydration salts at home. Yes it was dx via stool sample. God it's been a miserable dose!! They were about to give me Erythromycin but my GI doc said wait as its a self limiting infection, and he really tries to avoid antibiotics with me.. Then today it seems to have really... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
leakage issues solved with fiber supplements , does it help?
PouchomarxPouchomarx
Romina ❤️
TinCan I use a product called konsyl regularly (occasionally metamucil wafers and oatmeal). Konsyl is 100% psyllium fiber - no sugars or flavorings, which is my preference. However, I can't say that fiber has helped with leakage, at least when I am experiencing inflammation. It does thicken things up, allows more complete evacuation, reduces butt burn and in general makes me feel more comfortable. But only if I have my inflammation under control. Otherwise I run much the same risk of leakage... [ more ]
Sharon W I started last night and found last night to be worse instead of better. I did the powder in water as well. Man I cant wait to really ream my surgeon on Friday for the lack of information given about transitioning to jpouch and what the end goal is and how to reach it. Literally my discharge instructions were: do not lift more than 10 pounds for 3 weeks. Eat a healthy diet. How did that prepare me for these days of going through 6 pair of underwear a day (again) and the burn from the not so... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
How does Gas-x work?
I iHateColitis
DJ H For those that have had success with Gas-X or similar, how much do you take? I've tried it off and on over the years, but usually end up stopping since I don't notice much improvement. Though I may not have taken enough dosage....hard to tell. More trial and error I guess if I try it again. Gas is a bit of a problem for me for sure. I totally get what the OP means about making huge amount of noise in public places - very embarrassing! [ more ]
Scott F Gas-x breaks up gas bubbles into smaller bubbles. These have less tendency to stretch the intestine, which is what causes gas pain. Once it's in your pouch the volume is the same, though. It's fine to take both Gas-X and Beano, if they both help you. [ more ]
hattie Scott, what do mean by Gas-X changing how gas is redistributed? Would it be safe to take both beano and gas-x since they seem to approach the problem from different aspects? [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Metamucil wafers are awesome
JP Jeff P.
Rebe0505 ok let us know if it helps..start off with 2 teaspoons a day morning evening then up it to tablespoons..2 or three a day.. [ more ]
jewel66 Okeeeee I will try... nothing ventured nothing gain! [ more ]
Scott F Konsyl (at least the original formula) is just plain psyllium husk, just like the stuff in health food stores. I have no idea which is less expensive. I always take Lomotil before bed (it works a bit better for me than Imodium, but they are very similar). I generally sleep through the night, but it's much more reliable with Lomotil on board. [ more ]
See all 33 replies...
J-Pouch ForumsGeneral Discussion
Now Hospice Patient...
Randers.USARanders.USA
Inbetweener I've been thinking about Josh every day since I read his post and I can't tell you how heavy my heart feels when I think about his situation. I'm hoping he hasn't responded because he's not able to right now but will soon. All we can do is hope. [ more ]
mgmt10 I just read this thread. I cannot believe this day in age nothing can be done. I hope Josh got some help and he's recovering and that's why he's not posting. So upsetting. [ more ]
skn69 No, none. I emailed him directly but received no response. Sharon [ more ]
See all 19 replies...
J-Pouch ForumsGeneral Discussion
Post takedown expectations? What are they
ItsanewworldItsanewworld
Pufferfish I'm going through exactly the same as you right now (though 14 days post takedown). This forum has been invaluable to me. I intend to ask my GP for ilex paste today. Good luck [ more ]
kta The best advice I ever got was to just be patient. You are in early days. This takes a while. It has been a long time for me, but I remember being able to eat sourdough bread and that was about it. That lasted for a long time. [ more ]
Scott F NewWorld, are you using any sort of barrier cream? Most people find it very helpful in the early days, at least. it takes a while to adjust to the new plumbing. Try to be patient. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Loperamide
P Pufferfish
Pufferfish I'll get my husband to pick them up from our health food shop tomorrow then! Thank you so much for your advice [ more ]
Paul H Hi Pufferfish, Took me 2 or 3 months to settle, I was like you with Ileo. The best thing that helped was a bulking agent, I use 3.5g x 3 a day of Pysllium or Plantago Ovata. Diet was brat, bananas, rice, apples, toast. Good luck Paul. [ more ]
Jan Dollar Gee, that was 20 years ago and my memory is dim. I guess a couple of months. Be sure to use barrier cream to avoid butt burn. Jan [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
day 5 post takedown, feeling bloated
D Dunninator
Scott F If you stay patient and keep your diet and food quantity moderate this is likely to stop bothering you over time. [ more ]
Pufferfish Hiya. For what it's worth, I'm now 13 days post takedown and have this too. Peppermint Tea has helped somewhat but I do believe that time is the primary factor. Make sure your diet is low residue and avoid all gas-producing foods. best of luck! Looks as if we are starting this journey together! [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Septation?
CatinthehatCatinthehat
Jan Dollar It probably is related to that incident. Jan [ more ]
Catinthehat Thank-you Jan, that helps. I had an infected abscess after my first surgery. I was wearing a portable unit getting antibiotics for 8 weeks. I wonder if this is a remnant of that. It showed up on an MRI that I had several years ago. I am trying to get more info from my doc. Richard [ more ]
Jan Dollar Cleveland clinic does do remote second opinions. Essentially, they review your medical records and make recommendations based on that. Insurance probably will not cover it and would cost $500-800. In the long run, you'd need to see him in person. This is better described as a pouch sinus to a presacral collection/abscess. I had a presacral abscess and it wound up sending me to the hospital for 12 days with a fever of 105. It was a dicey fix with a drain inserted through my butt cheek for a... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Recommendations for surgeon at U Penn
T TotesMagotes
yogijano Hi- Totes When I had my surgery I was 17 so I was at CHOP for everything. My surgeon there was Dr Peter Mattei- by far one of the best physicians I have ever had the pleasure of working with. He is affiliated with Penn but he mainly does pediatric cases I believe for CHOP. He has the best bedside manner ever- would love to still go to him if i could. He's also always done an excellent job on all my surgeries. Now that Im 29 I recently used a new colorectal surgeon affiliated with main line... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
cold cereals
MIKEEYMIKEEY
Former Member I've been thinking about what's the friendliest cereal you can eat for your j pouch? By friendly I'm talking about something that has a long life in your stomach. I know something such as bran flakes is very bad news when it comes to my pouch. I'm not surprised given how rough the surface of bran flakes is. I'm thinking soft, soggy, surfaces would work the best. I've been eating cereal with my pouch for over 20 years and still don't know though which is the friendliest? Right now all I can... [ more ]
Spooky I love cold cereals, particularly Rice Krispies and Corn Flakes, with sliced strawberries and almond milk. I don't have issues with either. Obviously I avoid the sugary cereals. I also avoid any cereal with bran - I learned the hard way that I certainly don't need quite that much of an extra kick to my frequency! Although obviously not a cold cereal, plain oatmeal is one of my go to foods. It bulks me up while also making the stool a consistency that is easy to pass. [ more ]
mgmt10 I forgot in my post above that I eat Rice Chex too. They have a bunch of yummy favors. I don't follow a gluten free diet but they happen to be gluten free and they agree with my system so it's a happy thing. [ more ]
See all 19 replies...
J-Pouch ForumsGeneral Discussion
Abdo pain
GweedeeGweedee
Mom4td That is interesting...thanks for your response and let us know how your dr visit next month goes. [ more ]
Gweedee Well still unclear... had the scope... they took like 12 biopsies and they found one weird looking black hole... they said its could be a fistula or.could be crohns.. had an mri a few weeks ago and going to see the doc in July... they did figure out the pain i was experiencing.. when they pass through the inlet that connects to the jpouch at the top.. i felt that pain.. and they said that when my pouch gets full sometimes jt can push back up through the inlet.... that causes the pain.. same... [ more ]
Mom4td Gweedee, did they figure out your issue? My son has a Jpouch and has been running low grade fever, extremely tired, and Dr discovered an enlarged spleen. He is not having pouchitis symptoms like blood, cramps, etc. blood work came back normal and now they want to do a CT scan. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Why is it all so difficult???
JeffsmomJeffsmom
LORI726 Hi, I am/was dealing with 2 fistulas and my J pouch is currently diverted with a temp ileostomy. In April, I had a fistulotomy done in the lower one and a cutting seton put in the higher one. My seton broke within 2 weeks. When I went back out to Cleveland in May for what was supposed to be seton tightening, I told my surgeon that I am 99% sure I am going permanent Ileo. My sanity is nearing its end at this point. I am not a fan of the setons and I am tired of going under local anesthesia... [ more ]
Pouchomarx where was rumor heard? I think somethings up.. his office emailed me back stating they cannot comment on that [ more ]
Jeffsmom Rumor, not sure I heard correctly but if I hear fact, I will surly let you know. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Food with beverage
H henrik
Nick8 ❤️
Inbetweener Hello, I'm new on here but a veteran UC patient, ileostomy for 13 years and now a j pouch and temp loop ileostomy, the pouch is not connected up yet because it's been very naughty...12 months of naughty! So my loop ileostomy is on quite a short bit of small bowel...and certainly I have been told not to drink too much before or after eating, to aid absorption of your food. And I do find that if I drink lots with food, my output is much much higher, and I'm probably just getting rid of what... [ more ]
Jan Dollar I have seen this recommendation often. It is to help prevent the stomach from emtying too fast and helping to slow digestion. I have pretty much always avoiding drinking much with a meal. I guess having colitis or a j-pouch most of my life, I just naturally adapted my eating habits that way. I do like to sip on wine with my dinner, but no gulping down a glass of water. But, you need to be sure to drink plenty of fluids between meals. I don't know about not drinking before eating. Jan [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
FDA Approves Inflectra, Biosimilar Similar To Remicade
CTBarristerCTBarrister
Jan Dollar It may be sooner, since it is not in direct competition with Remicade (no application or approval as a substitute/generic status). But, the makers of Remicade are fighting it anyway. Jan [ more ]
CTBarrister I had the same question if it was the other drug my Doc was talking about but it will not hit the market until 2018 I believe. [ more ]
Jan Dollar Thanks for posting this! I remember seeing something a year or so ago, but had not seen the recent approval. This is not considered a generic for Remicade, but just similar. They didn't apply for or get approval as interchangeable with Remicade. Still, it is good to have other options. I also am not sure if it would be a cost savings. http://www.medpagetoday.com/rh...logy/arthritis/57239 I wonder if this was the other biologic your doc was talking about that began with "I"? Inflectra. I also... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Constant anal throbbing with urgency please help
S SonnyJ215
Inbetweener Hi Sonnyj215, i just wanted to make a quick comment about antibiotics...when you say that you have just started taking some, I assume you mean you have part of one course of antibiotics left that you now intend to retake? If that is the case, then you need to go back to your doctor and get a new course of antibiotics or enough tablets to make up a full course. Not finishing one course and then taking the few leftover tablets but not a full course will only build antibiotic resistance in your... [ more ]
Scott F Abscess formation has nothing to do with your diet. An imperfection in the surgically created seals, or an unfortunate reaction by your body to the surgery are much more likely causes. [ more ]
SonnyJ215 Thank you Jan as always.... I did resume my antibiotics before bed last night and I will finish them out ... But other question is there a reason they occur Is it something that I'm eating ? ... Again thx for reaching out [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Update on J-pouch
AS Allison Schur
Jan Dollar Thank you for returning and sharing your good experience. It is much easier to just go about your life and forget about the bad times. But, we do need to hear about the success after the trials and tribulations of early pouch life. You'll probably still have some bumps in the road but it appears you are equipped to handle them! Jan [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
1 week post takedown
ItsanewworldItsanewworld
henrik That's exactly where I was two weeks a go. So frustrated with the feeling of having gone through surgery three times and the hell that comes with that, only to end up with this flare-bs. I was going depressed but just out of the blue my BM slowed down, got thicker and I could go out without the agony of soiling myself. So yes, it gets better. For me it was week 2-3. Now I go 4-6 times a day, and sometimes once during night. That's acceptable to me. I do take a lot of loperamide/Imodium... [ more ]
Itsanewworld Hey. I am 9 days post op and knock on wood, i am starting to see the light. It does seem like my bowel system is getting acquainted with its wake up call. I'm actually able to see bulk building in my stool To handle your issues in the interim try the following: 1. Take Metamucil. One scoop in the morning before breakfast and one on the evening before dinner. 2. If that doesn't start to do some improvement, take Imodium to reduce number of times you go and it will help water be absorbed but... [ more ]
Sharon W I am 6 days post takedown and the last 24 hours have me feeling a Deja vu. This is exactly what a UC flare was like. No control, changing clothes more than 3 times, and add Butt burn. Please tell me it gets better. I tried the peanut butter trick, it didn't help. I am hoping it's just a temp setback. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Blood and white liquid output from pouch
R Roger1066
Roger1066 Thanks for the advice guys, I used a bed pan yesterday to observe what was coming out, it could be mucus but there's white bits; which I'm assuming is bits of small intestines mixed with blood . Thankfully its not the heavy kind of bleeding that I experienced post surgery , bathroom trips are accompanied with a slight urgency however. I have been prescribed some medication to stop the bleeding and I haven't emptied my pouch yet so who knows I might be on the mend . [ more ]
Jan Dollar I agree. It is normal to expel mucous from the pouch and even some stool to slip padt the loop ostomy. Jan [ more ]
Spooky Actually Roger, this is not really out of the norm. Your small intestine continuously produces mucous, and this will collect in the pouch and pass that way. So, what you are likely passing is mucous. From time to time, you may feel an urge to have a bowel movement and will pass mucous. There can be some minor bleeding from the surgery, though it seems that your doctors rightfully got this under control. Also, keep in mind that even though you have a loop ileo, your intestine is all still... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Ready for Takedown... Best Ointment for Butt Burn?
bootstrapbootstrap
EFS Ilex Ilex Ilex.................. it eliminated BB for me back in 2000 and have never had to use it since. Gave some to our daughter-in-law for our grandson who had terrible diaper rash..... it cleared that up totally in just a day. So, just get some and use only a pea size at night and in the morning. [ more ]
Former Member I Second ilex paste I've tried them all and the only product which worked for was the ilex, instant relief and my skin totally healed witin 3 days of applying it. My experience was for the treatment of red raw, broken, weeping and oozing skin around the Stoma of the loop ileostomy. Since takedown, every so often I've used ilex to cure anal itching and a burning sensation. Also, every so often I apply a pea size amount just to the inside of the sphincter to treat what I believe is an anal... [ more ]
woodstock69 I have tried them all, i even spent $200 for 240 grams of cholystramine, so not worth it as of yet. Aquafor is good, I personally did not like calmoseptine, vaseline is good and cheap in large jars and does not stain your underwear like zinc creams which are so messy. I also had good results with nystop powder but when you go alot it comes off fast. Corn starch may work, I was told to keep it dry not moist. We are all different and our j pouches are too. Bidet is a double edged sword, if you... [ more ]
See all 16 replies...
J-Pouch ForumsGeneral Discussion
exercising with a stoma bag
GinLynGinLyn
Mysticobra I use convetec products also. I find them the most comfortable. And easy to apply and remove. Gin... Isn't it great to finally get your body back? I find that it has been nothing but good. Better knock on wood... Lol. Richard. [ more ]
Former Member I've used all brands of appliance during my time with a stoma and the only brand that has provided security and confidence are appliances by ConvaTec. I woukdn't be able to remove the ConvaTec self adhesive wafer/base without the use of an adhesive remover. For years I've had tremendous success using the ConvaTec Esteem Synergy two piece appliance. I've never had any need to protect my Stoma or the appliance during showering or bathing. I've swam in a pool, the sea, sat in a bath and also... [ more ]
GinLyn No, no real reason why. I think it is more that the system I have is working just fine, so no one is bothering to change it. I do have a very deep portion of old scar which I have to fill in with wax AND use a convex wafer AND a belt, so maybe that is why? No problems changing; the wafer pulls a bit when being removed, but I'm not having any skin problems. I'd like to switch to one that lasts more than one day just because I'm tired of doing it every day! I'll check into it more when I get a... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
DONT GET DISCOURAGED - THINGS DO GET BETTER
bederyparisbederyparis
Sharon W Update: I had takedown last Thursday. Was in hospital until Sunday. Overdid it yesterday thinking I was superwoman, Just relaxing today. I think it is going pretty well getting up twice a night before the alarm rings to go to the bathroom. I have had some close times but so far been able to hold it except once yesterday. I will keep reading and posting as I progress. [ more ]
golflady1119 Sharon...yes, BMs had to start before they would give me any food at all! That happened late Saturday evening (about 24-30 hrs after takedown). I was never on a special diet afterwards. Except for the first day, I did not sleep any more than normal (very different from the first surgery where I napped almost everyday for a month or more!). I also never took any prescription pain meds after leaving the hospital (I live alone and didn't want to be loopy!)...just Tylenol and Advil. Also if... [ more ]
Sharon W ❤️
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Decision on getting J-pouch
W wirlygirl
Dean227 Hi Im planning to go for pouch surgery in January as i had to have an ileostomy last year after i exhausted all the drugs available. I hope it works well as im in the construction industry and need to be at work [ more ]
Former Member Well, I had my Stoma for many years before I had my J pouch created, so you have plenty of time to make your mind up or complete your studies first. Body image was a huge factor for me and juding by your usernane, I assume you're female and therefore, I also assume, due to the type clothing young women like to wear, body image and appearance is far more of a concern. (sorry if my last statement offends) I was intially diagnosed with UC but when my colon was removed, it was decided I may have... [ more ]
BillV Welcome to this forum! My first surgery was in 1981 at Mayo Clinic in Rochester. My surgeon did a straight connection with no pouch (I was one of their first patients with this procedure), but experienced major frequency problems. In 1983, I returned to Mayo and had a j pouch constructed in a one-step operation. While recovering from the operation in the hospital, I received a registered letter from my employer (I was a VP of Finance at a large hospital) saying that I was fired. At the time,... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
How do you deal with nightly incontinence/leakage?
E ElSur
CTBarrister Levsin at bedtime, Depends disposible underwear, if pouchitis related treat the pouchitis as well. [ more ]
ElSur Well, for me it is managable with a sanitary pad when I'm healthy. I've found out that Immodium (two pills, 4mg in total) reduces the amout of leakage but that there is still some. I just wanted to see how others deal with it as nightly leakage obviously is a well known problem when having a J-Pouch. I was looking for some other tips than the ones I already know When dealing with something like that I guess everybody tries to find the best solution and with some input from others and some... [ more ]
Scott F I can' tell what quantity of leakage you're dealing with, but two things that I do are 1) I don't let pouchitis go untreated. Nighttime leakage is often a first sign of pouchitis, and 2) I take Lomotil at bedtime, but not during the day. Others have found a small fatty meal (e.g. a spoonful of peanut butter) helpful at bedtime. Good luck. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Issues with Emptying, been on every medicine so far
dgtracydgtracy
dgtracy Sounds embarrassing, aka like many of the other tests. I'm going to contact my new doctor and schedule an appt. See what he says then bring this up. Thank you all. [ more ]
Jan Dollar It is like a barium enema, except with thickened contrast and they do flouroscopy x-ray while you empty your pouch. Jan [ more ]
dgtracy What is involved with a defagraphy? [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Allergic reaction to Apriso
MM Mama Mia
rams1380 My reation to Apriso was flu like symptoms, raging diarrhea . My Gi just prescribed me Pentassa. My fear is the same med prodicing the same issues. Gi says its a different way to deliver medicine [ more ]
Jan Dollar Pentasa has the same active ingredient as Apriso, mesalamine. While allergy or acute intolerance are not common, they happen. Pentasa is not as delayed release as Apriso, so there may be more systemic absorption, which I think would increase your risk of a reaction. How about forgetting about mesalamine altogether and try something different like Imuran, methotrexate, or antibiotics? Mesalamine is no longer considered very effective for Crohn's. You can also try biologics if the other oral... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Do I need to take Immodium?
M MCH
Spooky I agree with others. If you are happy with your frequency, there is no real advantage to taking a bowel slower. In your case, since you seem to have good functioning, it may in fact have the opposite effect. At one point, I was taking imodium 2 times daily because my surgeon recommended it after takedown. But I actually don't take imodium regularly anymore and I haven't for several years now, as I don't like my stool to be too thick. I also have adhesions and I've had several partial... [ more ]
CeeeeCeeee I prefer liquidy stools as long as I continue to have full control. If I want to bulk things up, Metamucil does the job! Usually I take nothing. Having liquidy stools insures my J-pouch empties easily and quickly without needing to push at all. My J-pouch is "old" and so I never need to use a barrier cream. [ more ]
Jan Dollar I am with Scott. Unless you have high frequency, I see no point in taking Imodium. Your frequency is on target. But, adding some bulk for thickening could help your butt. Slowing your gut too much could cause some real problems. Jan [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Stoma hole left open to heal
M Momma
CTBarrister That is true about scars. In addition to my 4 bowel surgery scars I have a fresher scar on the bottom of my neck from thyroid cancer surgery in July 2015. It's barely visible now, but my surgeon said use 70 sunblock on it whenever outside. I put Aveeno 70 sunblock on it and it really helped I believe. There are also scar creams. The one recommended on the thyroid cancer board was Mederma to which I had a reaction (possibly from the onion in it), but I had good luck with Scarguard. These... [ more ]
Jeffsmom Jeff had a stoma hole as well. I just asked him and he said about 4-6 weeks. It is freeky to look at. Wigged me out for sure! The scar is a bit nasty. Here is a thing about scars. Don't go out in the sun. For the first year keep it covered. By next year it will look completely different. I know this from my open heart surgery my surgeon told me to keep it covered. I did and you can hardly see the scare. It's smooth and white looking. Jeffrey is a bit heavy, so his scar is a little thicker... [ more ]
Mysticobra Lol... I got the money for nothing scenario! Back to square one. No regrets. Richard [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
A curious question about gas...and other stories
ClariceClarice
Chris1985 Clarice I am exactly the same. I don't have chronic gas but when I do get gas I am unable to release it. I have to lay on my back with my legs in the air. I'm unable to release it sitting on the toilet also. It does make socialising more difficult going out with friends etc. At work the majority of my colleagues know about my condition, I work outside alot and they know if I'm on my back not to come and help I'm perfectly fine lol. It was embarrassing at first but then I thought bugger it if... [ more ]
Clarice Ah, ok, I thought you meant simple carbs. Fruit & veg I'm already careful with, and pulses are certainly my nemesis! Such a shame it's all the lovely healthy food I love. I get very low in vit D & zinc. [ more ]
Jan Dollar Yep! Simple physiology. This is why Gas-X and similar drugs are fairly useles for us. Those things are mostly for stomach gas (belching). http://www.mayoclinic.org/dise.../causes/con-20019271 Jan [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
Scuba Diving
AlexisAlexis
Alexis Thanks I just figured I'd ask. I can go 3 to 4 hours without having a BM so that's not my worry that much it was a just in case. I'm guessing most driving won't last that long. I don't have to take anything to slow my BMs which is nice [ more ]
Scott F Alexis, for me the joy of having a J-pouch is that I never really "have to" have a BM, unless I've already put it off for quite a while. I do prepare carefully in the morning before diving, eating very lightly and taking Lomotil, but that's to avoid the need to use the marine head on the boat, rather than concern over any bathroom emergency while under water. The dive itself lasts perhaps 20-40 minutes. I do select dive boats with toilets (or at least I try to), but I don't tend to use them. [ more ]
Alexis My main concern would be if you have to have a BM while down under. [ more ]
See all 13 replies...

Join Us!

Founder, Creative Director & Web Master

William J. Johnson
bjohnson@j-pouch.org

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.

Forum moderator and advisor
Jan Dollar R.N.

 

 

 

 

General Disclaimer

 

This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.


Materials presented on these pages are copyrighted by William Johnson and Linda B Hurd. Except as superseded in individual documents found here, these materials may not be sold or redistributed for profit in any way without express (not email) written permission of the authors. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD-ROM and inclusion in commercially published compilations (books).

Confidentiality

Confidentiality of data relating to individual patients and visitors to the J-Pouch Group Web site, including their identity, is respected by this Web site. The J-Pouch Group Web site owners undertake to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.

 

CCFA

The Crohn's & Colitis Foundation of America,
Philadelphia, Delaware Valley chapter, is located at
521 Bustleton Pike, Feasterville, PA, 19053.
Tel: 215-396-9100


National CCFA headquarters are at,
396 Park Avenue South, 17th floor
New York, New York 10016-8804
Tel: 212-685-3440    800-343-3637

 

Join Now

Already a member? Sign In

Online Now

  • Scott F
Copyright © 2019 The J-Pouch Group. All rights reserved.

Membership Required

We're sorry. You must be signed in to continue. Sign In or Register
×
Are you sure you want to remove from your Block List?
×
Loading...
×
When you block a person, they can no longer invite you to a private message or post to your profile wall. Replies and comments they make will be collapsed/hidden by default. Finally, you'll never receive email notifications about content they create or likes they designate for your content.
Note: if you proceed, you will no longer be following .
×
Link copied to your clipboard.
×