Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsHelp! Need advice now!
Going on Day 4 of takedown - feeling horrible
M MaryMomof3
TomU ❤️
lhh65 MaryMomof3 I hope things are starting to improve for you -- because I can literally feel your pain. I had ileus after my takedown (and two surgeries following that as well). Besides the ghastly NG tube, which they had to put in post-op, they also started me a few days later on TPN (total parietal nutrition), which they feed you through a PICC line. Though it was more than a week after surgery, it seemed to help me turn the corner. I had not eaten anything for almost 10 days by the time they... [ more ]
skn69 MaryMomof 3, How are you doing today? Is it calming down? Is it getting worse? Has the ileus resolved yet? All of my original surgeries up until 2007 went well post op with no ileus (I had over a dozen)...my only problem was healing and dehyssing. In 2007, 10 days post op and just as I was starting to feel better, I got a (what I thought) was an obstruction after eating a bagel. It may have been my 1st ileus, will never know. 24hrs of hell at home alone and terrified until my uncle drove me... [ more ]
See all 7 replies...
J-Pouch ForumsK-Pouch Korner
DECISION SOON K POUCH OR BCIR
L lifescircle
skn69 WillLive, I have litterally had a dozen k pouch revisions and valve revisions although they have never rebuilt the k pouch itself they have excised the original valve and totally rebuilt it by flipping the pouch over and using the affernt limb (the incoming intestine) to build a new, living colar onto my valve...a double modification of the k pouch original valve. It is very different than the original and I can litterally feel the difference. I may not like it as much but if it lives... [ more ]
WillLive4ever Hello, feeling a bit more optimistic today. And it has been a long time. I am curious if anyone has had a K pouch revision that resulted in a design more comparable to that of the BCIR? Sincerely, Will [ more ]
lifescircle Thanks, everyone! Hey, Vanessy, what do you mean looks better? I've always thought my small intestine was one of my best features. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Natural Fistula Healing
J Jpoucher4life
rachelraven For two weeks after it was removed, things were wonderful. Then, I started getting some pain at the exit site, not as bad as when things started, but some discomfort (though twice during the times after removal, I had two bad days of pain). The skin just wants to close faster than the inside of the tract, and just traps the mucus. My drainage now is WAAAY less than when I got the seton in in 2013, but it was enough to get trapped when the skin finally started to heal shut. So I returned to... [ more ]
K78 Rachel- I have an Rv fistula and seton for about 8 months. My doctors decided to try a biologic to help calm down inflamation-- I recently had cuffitis. I think my surgeon may think I have crohn's but I haven't been given an official diagnosis of cd.i think I'm on a somewhat similar path as you treatment wise. I started taking Cimzia and I'm not sure if it's helping inflamation but it certainly makes me feel like crap in terms of nausea and fatigue. I'm curious how your responding to humira... [ more ]
rachelraven 1.5 years was enough for me to try it. I will say that things did calm down drainage wise, and the granuloma tissue around the exit area went away, too. I think the Hunira had something to do with it, it chilled out after my initial 4 shot induction. [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Strange pains
H Hoping
Hoping Thanks Lambiepie. It is comforting to know this is not uncommon. I just did not realize so much pain would still be involved. I really think I may be on the edge of a flare so I am going to get back on the flagyll and see if that helps. GI had given me bentyl for cramps, but it really does not seem to help. Getting a little discouraged that everyday at the same time I just want to curl up in a ball and sleep! [ more ]
Lambiepie Yes, Hoping, that is how most of my days go. If there's anything urgent I need to do, I try to do it earlier in the day. I'll even try to walk my dog earlier because I never know what the later hours will bring. I'm not sure why this happens, maybe just more food in our systems that our pouches are reacting to. I cut out most dairy and that seems to be helping. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Should i lose my j pouch?
K KyleG
Mhg26 Hey Kyle, I'm also sorry to hear about your troubles with the pouch. I felt the need to comment since like LHetti I too had my pouch created at HUP! I can't say I've had too much experience with pouchitis (knock on wood), but I know that even little problems with the pouch can cause great suffering. Before going off on too many tangents I'll be direct. Aside from getting another surgical opinion, which is something you definitely should do if you haven't already, have you had any chance to... [ more ]
F-TOY-120 Look into this doctor he is in west los angeles hollywood, t an alternative, i stumble across by accident, i am going to talk to my surgoen about him, if its the only last resort, better than having a messy bag. www.ileostomy- surgerey.com [ more ]
LHetti Kyle, I really hope they can help you! I loved my pouch and tried it all to get it to work out, but I lost my 15 year old pouch this spring. (I see you're in Philly- my jpouch was created at HUP!). In my case, yes, the incision is again that big midline incision like before. My stoma is in the same spot at my first one. I am very happy with my decision! I workout (sweat!), wear most of my normal clothes (I made a few adjustments to make everything seem more secure), do just about everything... [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
I must be delusional...... Apparently
K KeepFighting(Manny)
KeepFighting(Manny) I hope they found out what's going on with us soon Jan. I was using oxycodone to combat the pain but I know that's not the right approach. I have been off oxy since Sunday. It has been hard. I haven't been eating much either. I am so tired and faint. I'm going to try some soup and see how that goes. I would love to be admitted to the hospital but my scopes showed nothing and they won't admit me. It's so frustrating. [ more ]
Jan Dollar I am in the same boat. Been going on for a few weeks, but something has been haywire for a couple of months. First suspicion was gallbladder/liver. Labs are checking out good so far. No fever or vomiting. Not even any nausea. Just pain and a new symptom of burping. I have a pouch scope scheduled, but this seems all upper GI. Could well be adhesions, but they have to rule out everything else first. These things can be hard to sort out. Doesn't seem to matter what I eat, so I am just eating... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
OMG
S stellababy
GraceB you also should not be eating any spicy or acid type foods at this time. Lomotil helps with bathroom issues and the other type remedies that are suggested by others. I agree you should be calling your doctor. we are all here to help feel better Grace [ more ]
stellababy Thank you so much [ more ]
dawn58 Sounds like you should be. You can get metamucil in the pharmacy, costco or maybe supermarket. You should call up your doctors office and tell them you want a script called in for at least lomotil. And, you should make an appointment to see the doctor and maybe going on some antibiotic, like cipro and/or flagyl. Sometimes a good combination. Also, you should be taking a probiotic. Two that are very much recommended are floristor and culterelle. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Staying hydrated
K Kastuhlm
Former Member ❤️
Catherin My sister gifted me a juicer this year and I've been making my own juices. I can't say enough about the health benefits; I am hooked. There's no way I could eat all the leafy greens, fruits and veggies that I consume in these tasty drinks. I also found coconut water to be really helpful for hydration and it's all natural. I'm not a big fan of the taste but I just add it to smoothies or juice. http://foodbabe.com/tag/coconut-water/ [ more ]
TeaBeforeWar If you want an option that's not a beverage, I highly, highly recommend S Caps . Sodium/potassium pill, take with a glass of water or equivalent. Doesn't cover everything that the sports drinks do, but it's way cheaper and you're not stuck drinking the same thing all the time. Super easy for traveling with, too, since you just need to carry the pills instead of lugging a supply of jugs around. [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Pouchitis? Or something else?
KarenchaseKarenchase
Jan Dollar Hard to say. Could be pouchitis or the flu. Since it was preceded by cold symptoms I would be suspicious of the flu. Enen if you got the flu vaccine, it is not 100% effective. We dehydrate faster, so don't hesitate to go to the ER or urgent care if this keeps up. Jan [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Too fat for a pouch??
D douglasj
douglasj That's a great story I hope it goes that way although I still'd like to shed a few (or many) [ more ]
Breezie Like Jan, I was very overweight at my surgery as well. My surgeon said the only issue that presented itself was that making the end ileostomy was difficult getting it through the abdominal wall, as I carried a lot of weight there. Many years later, and my pouch has been a rock star with excellent success. I think the surgery risks due to obesity are similar to what they would be with most surgeries, regarding healing, blood sugar, etc. But yes, I am thankful to have a successful pouch, to... [ more ]
douglasj Yeah, I've spoken to several nutritionists. I was actually a D1 college athlete and was a trainer at a gym while in grad school actually up to the point when sickness set in. Ironically in very good shape at one point. So despite my condition my excercise and nutrition knowledge on my own is pretty solid. It is not the wheelchair alone or diet, I had also 10 years on prednisone and other drugs that cause weight gain. When I could run and do circuit training etc, the "artificial" medicine... [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Using Probiotics
L Ljz
Scott F Laurie- I use both VSL and Florastor. The VSL seems to definitely help with pouchitis. I have no idea if the Florastor is helping keep C diff away, but I haven't gotten C diff in spite of long-term Cipro... [ more ]
See 1 reply...
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 ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Weight?
D douglasj
TE Marie Re: Weight? [ more ]
douglasj Thank you for your kind, informative, and thoughtful response. [ more ]
TE Marie I'm your height and weighed as much as you do when I had my surgeries. Plus I am a woman. I asked my surgeon if weighing as much as I did was going to be a problem and he smiled and said no. He then joked about how he could loose some weight too - he's not that heavy. I had my take down 8 weeks after my first surgery. I lost 85 lbs subsequently, in around a year. I wasn't hungry and when I ate it hurt. My Internist and husband were concerned with my rapid weight loss but I wasn't worried. I... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Blurred Vision
B briggsie
Jan Dollar Yes, Pepto Bismol could be tried, but it does not actually slow peristalsis. It works by reducing irritation. So, if your diarrhea is due to irritation and sensitivity (as in IBS/IPS), it is a good choice. Plus, it has mild antibiotic properties, so can be useful if your problem is bacterial overgrowth. By the way, loperamide and Imodium are the same thing. Imodium is just the brand name. Jan [ more ]
Anushka Lambiepie, somehow the fact that there's someone else out there in the world taking small bits of pepto is comforting. Not so much about the pepto, but the common experience. Grateful for this forum. [ more ]
Lambiepie Anushka, I was going to suggest Pepto, too. I had the same experience with it and find less is better. [ more ]
See all 16 replies...
J-Pouch ForumsGeneral Discussion
Pouch removal, new stoma placement
allswellallswell
aka KNKLHEAD Sorry about your issues. I am hoping you get some good care, five months is not terribly far out and it might turn around for you! As far as the stoma location, my first stoma was on the right side. I had issues with my pouch and my second was on the left side. The first was just above my belt line (think "Urkle"), but I asked the surgeon to put the second one lower and it's below my belt line. Much better. Hang in there, though! [ more ]
ccanepa456 I am in pediatrics but I have been having problems ever since my takedown as well in April. I preferably do not want the bag back because I am so young, but I too had a great way of life with it and miss that. My surgeons told me that with a couple of their past patients, they made them wait one year to go back to an ostomy. I am not sure if it would be different or the same for adult care though... As for antibiotics I am on cipro in conjunction with keflex right now and my GI says that it... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Ilex around loop ileostomy for sore,red skin ??
PouchomarxPouchomarx
Former Member Your appliance can be applied over the ilex paste immediately, there is no need to wait for the paste to dry. When I apply the paste to the Stoma collar and I fit the collar over my Stoma, the paste is still sticky and gooey. Once I've cleaned the skin around my stoma, I apply the barriers spray, allow it to dry then apply the paste. I wouldn't attempt to use a wipe over the ilex paste once applied, just fit your ostomy appliance on top of it or apply the paste around the opening to your... [ more ]
Pouchomarx once i apply the past, how long must i wait till its completly dry, and i can apply my bag on top of it? should i also apply the barrier wipe over the ilex once dry before i apply my bag on top? i have always used the barrier wipe on my skin just for extra adhesive [ more ]
Former Member Yes, I can vouch for ilex paste. By far the best product to completely heal sore, raw, broken, inflamed and weeping skin around the Stoma. I used it and within 3 days there was a vast improvement, within 5 days or there abouts, the skin around my Stoma had completely healed. I still use it as a preventative measure as I don't wish to endure the agony of bile acid eroding my skin ever again...... My only worry now is butt burn after takedown, although I believe and pray (figure of speech)... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
frequently bathroom trips at night
L lab
Robert 1 Hi there, had my colon removed 16yrs ago, still going to the toilet all night, wished I had not had pouch constructed, could sleep through the night with ileostomy, not any more, tried everything. good luck [ more ]
Txgal58 Every person is different. I had my colon removed 17 yrs ago and have had diarrhea ever since. How often I go depends on what I eat, what meds I take, how much stress I'm under, etc. I also take Tylenol 3 at bedtime with my Lomotil. The codiene helps with the number of times I may have to get up during the night. Many times I dont have to get up at all. But depending on other things, I may have to get up 3-5 times. It can get frustrating! [ more ]
dawn58 take the metamucil before each meal, and lomotil before you go to sleep [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
Possible for bladder to push on pouch?
ccanepa456ccanepa456
Jan Dollar I agree. Plus, remember that your uterus is between your bladder and j-pouch, so something could be going on in that department. Jan [ more ]
Spooky This is a possibility. The pouch and bladder are situated very close together anatomically. If one is very full, it can put pressure on the other. I've always found it more uncomfortable to "hold it" when my bladder is also full. There have also been some documented cases (though rare) of the pouch adhering to the bladder, but I'd look for the simplest explanation before I'd go jumping to worst case scenario. On that note, you should always look for the most likely explanation first. Your... [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Serious Butt ITCH
ATXGuyATXGuy
Former Member ❤️
loralie78 ❤️
Txgal58 Completely understood! Have you tried Ilex? A little outside and just inside the rectal area works great for me. Also cool soaking baths. Seems like we all have to find our own combination! Best wishes! [ more ]
See all 15 replies...
J-Pouch ForumsHelp! Need advice now!
lower left abdominal pain
J JessGoguen
rachelraven This might have nothing to do with you, and it very well could be something more serious, but I have a REALLY tight IT band on the left, and when it's raging at me, I get this sort of "hip" pain that even makes going to the bathroom painful, since I have to do more pushing to go than an average person, I suppose. I also had to resort to birth control, because ovulation would KILL me on that side, too, and cause referred hip pain/IT band pain there, too, that worsened during that time and... [ more ]
JessGoguen Thanks for the response. Sucky thing is that my pancreas is slightly inflamed and my bile duct shows narrowing however we are not doing anything about it right now. I will repeat an MRI in 2 months. I am trying to cope and avoid the ER. Will call into my GI tomorrow and see what's what. [ more ]
Lesandiego Pancreatitis. Go have your blood drawn and tested. Lower left side back pain was my only symptom and it got progressively worse. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
K-Pouch catheter used during pouchoscopy--complications?
John95John95
John95 Thanks for the input, Jan. I haven't felt anything for the past couple days. I've been taking sitz baths so maybe that helped. I assume the abscess created some sort of internal tract, but it never reached the surface because it was drained into the anal canal. When do these tracts become epithelialized and therefore nearly impossible to heal without surgical intervention? [ more ]
Jan Dollar Abscesses are fairly notorious for reforming, so you are right to be somewhat concerned. Be vigilant with the sitz baths, as that is pretty much all you can do at this point. Don't be shy about returning to your surgeon if this escalates, but you have time to wait and see. Jan [ more ]
John95 Well, I stopped the antibiotics about four weeks ago and had been feeling pretty good ever since. However, a couple days ago, I started feeling mild-moderate pain in the same area. I haven't detected any lump or swelling, so I'm not sure what to make of it. I've taken a couple sitz baths today. Hopefully these uncomfortable sensations are transient and not a sign of something brewing… Happy Thanksgiving to all in the USA. [ more ]
See all 17 replies...
J-Pouch ForumsHelp! Need advice now!
Advice....
B boyleb18
skn69 A very long time ago when they created my k pouch and left the colon in, I had the same problem...any time that the colon is left in place it wants to do its job, contract and empty out. I felt like it wanted to push itself out along with the (very foul smelling) mucus. That lasted until they removed it but I still have pressure and the occasional pain along with an uncomfortable feeling. Things should straiten out once the j pouch is created. You will be hooked up and have 'normal' function... [ more ]
boyleb18 I have had a consistent pain for at least 3 days with the pressure. Usually I get pressure then have some mucus discharge which is normal...then that pressure/urge goes away. This isn't. [ more ]
UjohnjC i waiting for takedown also i get that sometimes also not any pain though just pressure most days are good happens every once in awhile then goes away [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Fistula - Seton
C CROHNMOM
rachelraven No. Mine was much less intense than that, though it was NOT comfortable, and before the seton was in it hurt a lot more. The seton was in for 19 months, so the tract is more mature now. I never had discharge from the anus, only out of the fistula itself, which sits right on the anal area. Poor girl, I hope the next meds help her. [ more ]
CROHNMOM Thanks for your response. She was on remicade for 5 years but built anti body which explains why abscess and fistula. After her fever goes down, she'll start with humira and 6mp. The discharge is coming through her fistula and the rectum. The pressure/cramping is horrible when there is rectal discharge. Did this happen to you with your fistula? This pressure cramping and rectal incontinence is really taking its toll. Any input from anyone will be helpful. Thank you. [ more ]
rachelraven When I had my seton in, it stopped the cycle of abscessing/bursting. Occasionally would get discharge that felt weird coming out, but wasn't painful after the seton. Even with it in, I always had mucus discharge. It's out now, and we are trying a biologic to see if it'll close on it. The Medrol taper helped the most, it felt absolutely normal, so I had my seton removed, and had two wonderful weeks. Now, I'm on the fence and it's vacillating daily. Might have a few good days, then a not so... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Crohns ?
ccanepa456ccanepa456
Jan Dollar There is no rule book on this and it is pretty random, at least as far as they know so far. If you needed your colon out, your diagnosis would not change that. What would be different if Crohn's was known, is that you'd have an ileostomy, not a j-pouch. Jan [ more ]
ccanepa456 Thank you! The thing is I just got my j pouch in March...How could I have gotten Crohns that fast? I am wondering if this could have been prevented...and I am still not 100% sure I have it. My doctor is still talking to the pathologist about my biopsies. I hope I do not have it! [ more ]
Sarah18 Hi there, I understand!! When I was 9, I was really sick- but only in my large intestine, so it was removed, and I have a j-pouch. Then, when I was 29, I started having symptoms in the pouch and my small intestine- now I have a Crohn's diagnosis. I was devastated at first...I thought I was done with this stomach stuff...but my feelings around it have gotten so much better with time. A lot of people have Crohn's and because of that, they are coming up with better treatments and options every... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Chrons or colitis?
S sally85
Sarah18 Hi, When I was 9, I was diagnosed with Ulcerative Colitis, and my Colon was removed, and I have a J-Pouch. Just last year, when I turned 29, it was discovered that I have fistulas, so now I am diagnosed with Crohn's- as Colitis only affects the large intestine, and Crohn's can affect the entire digestive tract. That is my understanding of the main difference... [ more ]
rachelraven My daughter had the full colonoscopy thru to the ileo-cecal valve. She only has "colitis" but indeterminate leaning towards Crohn's related to "skip" lesions. UC starts out and spreads uniformly thru the large bowel and does not "skip" around. She also had a CT enterography to look at the whole top to bottom and thru the small bowel. In 1982-3 when I was dx, I don't remember a full on colonoscopy, but I just may be forgetting. Definitely many flex sigs. I did do a barium swallow. However the... [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
Have loop and already pouchitis
H Halo52208
Halo52208 They tested me for c-diff in the hospital. The cipro stopped working and the flaygl didn't seem to help. So I quit taking it for a few days. I started to have signs of c-diff and went back on the flaygl. Now it seems to be working. I am having close to normal stools. I think before I was eating to much sugary items. So now I am trying to eat better, but not easy with th holidays here. I have an appt dec 2 with a GI to do a scope. I'm nervous about that one. [ more ]
jeane I had diversion pouchitis with the loop ostomy. I also had it after takedown and was on and off antibiotics for a long time. I still need antibiotics, but I can go much longer periods of time off them and now tend to go on for a week followed by 2/3 weeks off. It's not the ultimate situation but my GI has no issue with this approach. It could possibly take you a bit longer to be able to stop the antibiotics and a c diff test is probably a food idea as well as probiotics while on antibiotics. [ more ]
Jan Dollar Have you been tested for C. diff? I'd be suspicious at this point, after all that Cipro. Jan [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Inexpensive bidet and cramps
Mema 1Mema 1
TE Marie I know what you mean [ more ]
Mema 1 I'm sure that I took it when I had UC and never had a problem. I'm trying to think of a reason that I seem to be bleeding so much, and I guess I'll try to think of anything. As far as the cramping goes, I'm still having it, so I guess the Canasa's not to blame for that either. Oh, well, good try. [ more ]
TE Marie I'm sorry you are still having all of your discomfort. Canasa isn't a steroid so it shouldn't do anything to cause your skin to thin. I've been using it regularly for almost 3 years and it hasn't caused anything like that. There are some people that are allergic to it's active ingredient mesalamine. Did you ever take it orally for your UC? Did you ever have problems taking it orally? It was the active ingredient in Asacol and some other meds. [ more ]
See all 15 replies...
J-Pouch ForumsHelp! Need advice now!
Lung Disease caused by UC / Pouch has UC / Pouchitis and Cuffitis
D DPKmalibu
TE Marie My experience at Mayo in Rochester has been great. My GI has referred me to 2 other departments and they all work together in treating me. I haven't had your health problems so don't know about trials. If I were you I'd check out both Mayo and CC. I'm sorry you are going through what sounds like hell. I hope that you can get better help. I've never heard of UC related lung problems before. Is it the case that your autoimmune system is jacked up and attacking other parts of your body or is it... [ more ]
skn69 DPK, No advice...just all of my sympathies in dealing with this nightmare. I know how hard certain medical situations can be...my only advice is to keep knocking on doors, never give up the good fight and do not take No for an answer. Not sure if there is anything that I can do to help but I do live in France and if there are non-perscription creams, foams or lotions that can help I would be happy to do so. Hang in there, Sharon [ more ]
Jan Dollar I do not have your issues, but I do agree that a trip to Cleveland Clinic or Mayo might reveal other treatment options. In any case, a second opinion is warranted. Jan [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Blood in Stool
kaitlinmckaylakaitlinmckayla
Anushka Kait, Thanks for posting this question. I am also bleeding and have just realized that I probably have been bleeding for a long time and that this is likely the reason I am so Anemic, with my ferritin levels dropping quite dramatically between IV iron infusions. So I will be watching replies to this post. I also have a lot of anal pain every time I go, so am guessing the blood might be associated with that, but I don't know. I have a scope scheduled for mid-January, but will urge my GI's... [ more ]
Jan Dollar Most likely this is cuffitis, an inflammation of the retained rectal cuff. Sort of like UC. You also can have regular pouchitis symptoms of increased frequency, urgency, diarrhea. I had UC flares throughout both of my pregnancies and both my sons were fine. You can use mesalamine products during pregnancy. You need to contact your GI or surgeon. Jan [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Rectal Spasms?
K krittyd
Bergie77 krittyd: have you gotten results for your husband's defecation tests and mri? [ more ]
Scott F This isn't normal. Most of us have never intentionally defecated standing up. My guess is that it won't resolve on its own - it sounds structural, but I'm glad you have an appointment to get it figured out. Good luck! [ more ]
krittyd Thanks for all your suggestions and replies. To answer some questions he does have to stand in the shower to defecate. He occasionally has to go to the bathroom at work on the toilet and he can do that but its very difficult. He has to strain and its painful. He also doesn't empty completely when he tries to use the toilet. I don't think the pain meds are an issue because he only takes them on occasion. His spasms seem to be getting better. They are not happening as frequently. Our main... [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Severe pouchitis-next step Remicade
Grace2Grace2
kaitlinmckayla what are the symptoms of pouchitis? [ more ]
desisn00ps Remicade is def a silver bullet but be careful with developing antibodies to it. I went into anaphylactic shock after getting Remicade because of the antibodies I developed to it. Just make sure your doctor does regular blood work to check for that. [ more ]
AllyKat Thanks Rebbe, I already upped my anti depressant. Sorry, I didn't realize I was posting so down. Thanks for being a friend and concerned. Lots of stressful stuff going on right now, probably not helping, but yes, I'm sick of this whole situation. I have so much to do and I'm stuck in bed today. [ more ]
See all 18 replies...
J-Pouch ForumsGeneral Discussion
Ulcers around stoma!?!
S sally85
sally85 Thanks Caty, I'm seeing my stoma nurse again on Friday, hopefully she can tell me whats going on, and ive been referred to dermatology now also, but I don't know how many weeks that will take :/ but hopefully wont be to long. Thanks so much for all your help xxx [ more ]
Caty Sally, Not all pyoderma gangrenosum ulcers have purple/black edges. Mine always looks like an ulcer, the area around the ulcer is painful to the touch, and the skin is bright red/pink. I can't answer your question about whether you have Crohn's Disease now or not. That's a question for your doctor. I have ulcerative colitis. I really can't offer you anything more. You need to proceed with talking to your ET nurse or colo-rectal surgeon on this subject. What I will say is don't wait too long... [ more ]
sally85 Hi Caty, I think I spoke to soon about the GP, i went to my stoma nurse again an they don't know what it is?! its not purple or black around the edges like pyoderma, and they don't look like pressure ulcers. Ive got ulcerative colitis or well did have before they removed my colon, could i have chrons instead?? is this sirt of thing related to only chrons? Sally xxx [ more ]
See all 8 replies...
J-Pouch ForumsPouchitis
UC drugs/biologics WITH antibiotics
J JJA
boy's mom my son takes humira and rifaximin and strict diet. He seemed to need it all... [ more ]
JJA I've been on xifaxin (rotate it with Levofloxin) the past 2.5 weeks while taking diflucan daily and still can't kick the thrush! That's what's worrying me. Normally 1 diflucan and I'd be back in business, but this is brutal. Plus now there is a known risk for Long QT (cardiac) if taking Levofloxin with Diflucan. I REALLY don't want to have to go off the Immuran and half dose Entocort as it has been my miracle drug combo. Still waiting for a call back from doc's office... If I could just kick... [ more ]
CTBarrister I had trouble fighting off fungal infections when taking Entocort plus antibiotics. The antibiotics kill off bacteria, the fungi overpopulate to fill the empty spaces, and your immune system is suppressed due to the Entocort (and in your case Imuran) and can't fight off the fungal infection as well. The game changer for me was diflucan PLUS going from cipro to xifaxin. Xifaxin is not systemically absorbed - it stays in the gut. It allows the bacteria in my skin (and in your case your mouth)... [ more ]
See all 3 replies...
J-Pouch ForumsPouchitis
Can I take Rifixamin and Cipro together?
TinatTinat
boy's mom my son was on cipro and rifaximin and after about a week weaned off cipro and has stayed on rifaximin. He started on high dose of rifaximin and has weaned to lower dose. [ more ]
Scott F Combination antibiotics is one of Shen's recommendations for pouchitis that won't otherwise respond. I'm currently on Cipro and Flagyl, which is a more common combination. I haven't tried Xifaxan in combination with Cipro, but it's probably worth a try. Heck, I might try it so I can have an occasional beer! [ more ]
ccanepa456 I am taking keflex and cipro together and it is helping me. My pediatric GI says he does it for a lot of his patients and gets good results. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
hip pain
U UjohnjC
UjohnjC thanks jan i was on high dose for awhile.Mark how did you know you had pouchitis while not connected? [ more ]
MarkGregory You can still get pouchitis with the disconnected pouch. I know, because I had it with mine. [ more ]
Jan Dollar Talk to your surgeon, GI, or primary doc about it. I had terrible hip and shoulder pain once I weaned off of steroids. My surgeon was worried about avascular necrosis from high dose steroid use, but serial x-rays and a bone scan ruled it out. Things simmered down by themselves, but a few years later, pain returned to even more joints. Long story short, I was diagnosed with enteropathic arthritis that I now take sulfasalazine and Simponi for. I also take medication for pain and spasms. Not... [ more ]
See all 5 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Feeling Baby Move after Surgeries
kaitlinmckaylakaitlinmckayla
Good to be healthy With my first before surgery 24 weeks. With my second post surgery I thought I could feel my very active kicker 13 weeks along my scars. I also had a csection scar from the first [ more ]
babygoose I'm 25 weeks now with my 2nd and felt him move around 17 weeks. I had my first before surgery and felt her around the same time. [ more ]
jodiloveslife You will definitely know! Felt mine around 16 weeks. Congrats too!! [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
moving south
DavidReischDavidReisch
Lesandiego I live in drought stricken southern Califoria. It's humid during the monsoon season, and dry during Santa Ana winds. Snow and mountains are 1 hour away and the beach is 15 min. I don't think I have ever been "diagnosed" dehydrated. I used to never sweat, but when I had my ostomy, I dropped buckets of sweat (when gardening) to where I looked like I just got out of the shower, and it would cause my ostomy bag to slip off. Now that I have my pouch and go to the bathroom less frequently, I am... [ more ]
jpouchmike I'm in S Florida. I drink a lot of Gatorade G2. [ more ]
suebear No matter where you move, you will adapt. Sue [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Just got back from Cleveland Clinic, bad news, need help
C cdowney
jpouchmike I am in middle of 3 step pouch redo with Dr Remzi also. Step 1 was in July and he is adamant about waiting 6 months before step 2. I am curious who your girlfriend's surgeon in NY was. I too was diagnosed with the "sideways" pouch and my initial surgeries were in NY. Feel free to PM me anytime [ more ]
AllyKat Ok so I see your in NY. I Had something similar to your girlfriend. Cleveland recommended pouch removal and a total redo. But my surgeon in NY was able to discount the pouch, clean out the infection, make it straight ( it also strangely moved), and hand sewn it back. This is call pouch advancement. Please contact Dr Milsom at Cornel, NYC for a second opinion. I have been pain free ever since, 15 years and counting. [ more ]
liz11 Dr. Remzi is the best. If he says do it in three surgeries.. he is saying that to ensure success. He is probably the most knowledgeable and talented surgeon to fix broken jpouches in the world. I had similar issues after my jpouch was first connected. I got to Dr. Remzi and he did an immediate disconnect. I then chose between a 3step redo and a pouch removal. I chose the later. Anyways... point is.. Dr. REmzi really cares for his patients and he will do whatever it takes to ensure success... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Inflammation
slightly_creativeslightly_creative
Scott F Have you actually ruled out pouchitis? "Pouchitis" just means "inflammation of the pouch," so the simple anwer to the question is "no." OTOH, lots of us have other digestive issues in addition to a J-pouch (e.g. irritable bowel syndrome, lactose intolerance, celiac disease, etc.). If you do some careful experimentation you might find some foods you don't tolerate. While I won't cheer for fried foods (except when i'm eating them), most J-pouchers can digest greasy food as well as the coloned... [ more ]
GraceB Yes you should stay away from fast food. Fried or greasy food is not good for us j-pouchers. I find it very difficult to gain weight also. I try very hard but there's only so much food my system can handle. Try eating small amounts of healthy food every few hours. It took me a long time for my system to get used to eating differently. I am one of those rear cases that found it very difficult to eat after the surgery. But I know that foods effect everyone differently. Also I find that wine... [ more ]
See all 2 replies...
J-Pouch ForumsK-Pouch Korner
Put in my own Catheter by myself.....
J Jasmine 2
Jasmine 2 I have had my catheter in February 2014, then took it out and that is the first time leaving my catheter in for 3 weeks didn't work for inserting my catheter. So I've still got my catheter in and I will probably just keep this way. I cut it down so I can have it long enough to empty and push it in flush and cap it off. I am using my 30 Fr. Marlen....my valve in longer than it used to be probably from the stricture. So I have to have it in for the length of my valve and then about 4-5 inches... [ more ]
dpol I lived with a tube always inserted for 3 months. I have wondered if it would be possible to have a small tube always in that we can cap where the stoma is and just insert a tube over it when we need to empty the pouch. It would be great to know you can always empty your pouch easily whenever you want. The fear of not being able to insert the catheter or having to go to extreme measures to get it in is a pain to live with. [ more ]
Jasmine 2 I do think it's a good catheter to have when you can't get in you own catheter, 20 Fr. or 28 Fr. Bard Red Rubber, as it is pointed and stiffer. For emergencies, I will be getting one if I can't find one in different material. Over time the part of the catheter that was in the pouch past the valve, did get softer. [ more ]
See all 3 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

  • Adventurecookie
  • Scott F
  • Jan Dollar
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.
×