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J-Pouch ForumsGeneral Discussion
Take down us quickly coming
C Coleeneedstogo
LibertyJ I had a horrible time with butt burn... I would cry.. it was awful.. I used gauze pads and soaked them in baby oil.. I used that instead of toilet paper or baby wipes. Even the sensitive/fragrance free baby wipes made me raw and I would start to bleed... The baby oil would cause itching, so I used cornstarch after I wiped with the baby oil soaked gauze pads. This was the best "recipe" that worked for me (& still does when I need it). My surgeon also wrote me a script for a lidocaine... [ more ]
Former Member Since my takedown, I wipe n cleanse with good olde' toilet paper; no special cleansing routine, procedure or bidet. Never had the dreaded butt burn either. I used wet wipes to cleanse initially, only because the hospital suggested to and now I keep a pack to hand but I rarely use them and can do without unless I've had an accident or leakage. On occasions, I do endure a rather annoying anal itch, especially during my first year since takedown and alleviated by the application of ilex paste. [ more ]
CTB23 I agree about the Calmoseptine. It's the only one I've ever used, religiously in the beginning. Just make sure the area is clean and dry before applying! I have a bidet and used it all the time in the first 6 mos. or so. At a year,I only use it occasionally. Same for the Calmoseptine. However, this varies for everyone, so you may or may not find it worth it to get the bidet. There are also hand held portable and some that attach to your toilet that are not so expensive. I believe you should... [ more ]
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J-Pouch ForumsGeneral Discussion
How and why does diet/food ate affect the J pouch ?
FM Former Member
lablover My husband used to have to take the skin of apples etc. Now, he doesn't because obstructions does not occur with the skins anymore. Though I worry. LOL [ more ]
Former Member Thanks for both replies, theories and opinions to my question. I guess it's an impossible question to answer; there's so many possible causes and what sufferers believe may be the cause of their symptoms. I just wondered whether underlying food intolerances was the cause. [ more ]
Scott F I think most J-pouchers have no strong food-specific issues. I also think that most J-pouchers that do have food-specific issues would generally have them with or without the pouch. That being said, here are the paths I can think of: Overdoing insoluble fiber can affect people with or without a J-pouch. Carbohydrates will tend to promote pouchitis in susceptible people. Some folks have real food sensitivities that aren't pouch-related, but are blamed on a J-pouch if they have a J-pouch. Some... [ more ]
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J-Pouch ForumsGeneral Discussion
Off topic a bit... Looking for nephrostomy advice
M mjmr89
JenJen I also had to look up nephrostomy. A quick read up on it reminded me of all the different stomas and intubation procedures I learned about when I first got my pouch. I had to leave a tube in my j-pouch for weeks a time early on and I had tried to make my own plug and tubing because of the difficulty I experienced using the standard post-surgical setup. I was also concerned at one point about using a glue in that area. I googled medical-grade glue and found a lot of options, even some on... [ more ]
TE Marie I have no clue either but empathize with your problem as a lot of us have tried unconventional ways to deal with our j-pouches and now our ileostomies. I'd ask my doctor or stoma nurse before using foreign substances with it. Leaks from anywhere are difficult and can adversely affect our quality of life. I hope you find a solution soon. [ more ]
Mysticobra I can't help you I never heard of the procedure until I looked it up. Amazing what they do. Sorry that this is happening. But I learn from others. I hope you find the information you need. Richard. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis? Or something else...
MochiMochi
Scott F Yes, Cortifoam is by prescription, and could cause some steroid side effects. To be honest, if my only symptom were mild bleeding I'd probably choose regular monitoring over Cortifoam. I'd at least discuss the trade-offs with my doctor. What nailed you in the earlier case was contracting C. diff; without that the reassurance would likely have proven correct. [ more ]
Mochi Thanks so much for your reply. I'm hoping it's okay for a while. I think what freaks me out the most is when I had the UC I was told over and over it was a mild case and no problem, far from needing surgery, and then I got c diff and within a few weeks had my colon taken out. I'm feeling great again and the possibility of a new big problem is terrifying!! I have read some good things about cortifoam, is it something my GI would need to prescribe? [ more ]
Scott F If you're bleeding without other symptoms that could possibly be just fine for a long time, particularly if the bleeding is minor. It sounds like you may have had both cuffitis and pouchitis, and the Cipro handled the pouchitis. If you want to try other things that might help the bleeding, Short Chain Fatty Acid enemas are a possibility, as is Cortifoam or Cortenema. [ more ]
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J-Pouch ForumsGeneral Discussion
Diet & Pouchitis
H Hopkins
skn69 I agree with Scott, Diet wouldn't effect an unused pouch...no food going through it so no "contamination" by the food... So sorry, but I am lost for any ideas on unused pouches... Keep calling to see if there is a cancellation... Sharon [ more ]
Hopkins Scott, I am just guessing. I have an autoimmune deficiency and I give myself Gammagard infusions weekly. Can't get scheduled for a scope until October 17th & will have biopsies to get a definite diagnosis. Thank you for responding to my post. [ more ]
Scott F Diet isn't likely to have much effect on pouchitis in an unused pouch. Are you sure it's autoimmune pouchitis rather than diversion pouchitis? [ more ]
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J-Pouch ForumsPouchitis
Reversal for no use pouchitis - now real pouchitis
L lex
MarciTP Just got home from hospital. I had rectal vaginal fistula my third one and it seems that I have pouchitis, the pictures showed ulcers outside the pouch all over. pouch was very tight and had to have a rectal stretch. the doctor now says it's hardening he's worried that I may not get better not sure what to do not sure what to eat. My potassium was 2.5 the week before I went into the hospital I went to the emergency room they sent me home with no potassium my doctor called me the next day... [ more ]
michhebe I do not want to tell you what to do but since I started using calmoseptine ointment (sticky) , no more butt burn and at same time reduced somewhat the number of times I need to go. Hope this is of some help. [ more ]
Scott F VSL #3 works best for me in rather high doses (I take 4 DS packets per day). You *might* see further improvement at higher doses (you didn't say how much he's taking). [ more ]
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J-Pouch ForumsHelp! Need advice now!
Functional problem
S sudie
skn69 Susan, So sorry, this really sucks...really. I have been having partial and semi-obstructions on a regular basis with full blown occlusions/blockages that last up to 27hrs... I have not found a one-size-fits-all solution yet... I had a couple of hernias fixed with mesh and my surgeon took advantage of being in there to clip a few adhesions as well as release a loop of bowel that was adhesed to the abdominal wall... I thought that I was done but the spot where the bowel was adhesed is still... [ more ]
Jan Dollar It might be possible you are having pseudobstructions, which is functional, but you have actual signs of inflammation/infection. Let's hope the antibiotics get you back on track. Jan [ more ]
Scott F I'm not convinced that a functional pouch problem can cause obstructions severe enough to lead to uncontrolled vomiting. It's more likely that the adhesion surgery either failed to get the adhesions giving you the most trouble, or new ones developed in their place. I'm sorry you're going through this. [ more ]
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J-Pouch ForumsGeneral Discussion
Vsl3
BrunolBrunol
Brunol Thanks guys for the fast response, haven't ask my surgeon the same question, but I'll see him next week. I'm curious about his opinion , and a bit anxious to step out of the ostomy "confort zone" but ,have to give it a try. [ more ]
Bobish To be honest I'm kinda of the opposite opinion to Scott. The body goes through a lot before it gets a pouch. If you can give it a bit of extra support why not. It is true that the jury is out on the benefits of probiotics. That's because stomach acid is mega strong stuff, so most probiotics don't even reach the gut. The 2 that have been proven are VSL (freeze dried) and symprove (liquid). Now just because they get to the gut doesn't mean they are beneficial, my surgeon says they are a... [ more ]
Scott F VSL #3 is pretty expensive, and no one really knows if it helps the average person with a J-pouch. Most J-pouchers do fine without it. I guess if money were no object then I might use it (in convenient capsule form) without a specific problem to solve. For most people it might make more sense to start VSL only if they turn out to be prone to pouchitis. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Rectovaginal fistula
SaffSaff
Scott F SAFF, Flagyl does come as a rectal suppository in some countries. I see that you're in Australia, so it might be available to you without my wacky idea. Your doctor is partially correct, that the Flagyl is absorbed into the blood in either case. However, we don't really know how antibiotics help in pouchitis, we just make some reasonable guesses. A higher gut concentration of antibiotic may be very important to success. [ more ]
Saff OK thanks Scott - yes I meant 'haven't' worked. I try them for at least two weeks yes. Probably haven't exhausted combinations though. I raised the flagyl concern with my doc. about not getting to my pouch but he said it works through the blood stream so should be effective still..but I agree youd think it would be more effective with full passage through the gut. Good to know about the flagyl gel - hadn't heard of that. will check it out. THanks, [ more ]
Scott F SAFF, I'm guessing you meant to write that the local treatments *haven't* helped. Hopefully you've given them enough time (at least a couple of weeks) and considered combinations of them. One wacky idea that you'd really need GI guidance for would be to use Flagyl gel, which is intended for vaginal use, applied rectally. I'm sure there's no research on this, so you (and your doctor) would be flying blind. Taking it orally isn't likely to get where it's needed. Good luck! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Sore around stoma
Melissa JeanMelissa Jean
Former Member Heavily smear ilex paste all around your Stoma, affix your Stoma appliance directly over the ilex and keep it on as long as possible until you need to change your appliance, ideally, try and manage at least 2 or maybe 3 days. When changing your appliance the ilex paste will peel away from around your Stoma in large chunks, peel it all off completely. If your skin is still severely damaged and painful, heavily reapply the ilex paste and stick your Stoma appliance over it again, following same... [ more ]
skn69 Not sure if this is possible for you or not considering the limitations of leaving the ileo without a bag but...(maybe you could try this while laying in the tub without water. 1. put a sun lamp on the stoma for a few minutes morning and night (you may wish to cover the sensitive tissues with a damp cotton pad while the lamp is on it. 2. Blow dry the skin...ditto, in the tub without water...the heat helps to kill the bacteria and heals the skin...put the dryer on medium heat so as not to... [ more ]
hever Hi there, Im having similar problems, illeostomy created in Feb after failed J pouch. My nurse said to apply the powder, then spray on barrier film, 3 times in a technique known as crusting, you could also apply a barrier sheet before putting on the wafer, first smear on a little anti fungal cream. Suggest you also use Eakin Barrier Seals or one of the other brands like Convatec or Coloplast, they all do them and will send out free samples of all their products if you phone them, they stop... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Inflammation and colitis
C CandiceT
Scott F Candice, when a J-pouch is working well it really doesn't need any attention. It's prudent to have periodic pouchoscopies, but it's not really essential. There are actually lots of causes of uveitis, but inflammatory bowel disease certainly is an important one. The acid reflux can be unpleasant, but it usually has nothing to do with IBD. It's understandable that being sick is stressful, but at least don't worry about not having had treatment for years - it sounds like you may well not have... [ more ]
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J-Pouch ForumsGeneral Discussion
Low Grade Dysplasia
C canman
canman Thanks for the reply Ledergoster. In fact, I have decided on j pouch surgery and am looking at a possible September date. I just need to wait and hear back from my doc. You're right LGD isn't something to mess around with! [ more ]
ledergoster I was diagnosed with LGD in 2014 after almost 30 years of living with UC. GI and surgeon said it was time to get the colon out, but I convinced the surgeon to do more frequently monitoring first. Started having every 4-6 month colonoscopies. Life got busy and 4-6 months became 6-8 months which became 8-12 months. Earlier this year my colonoscopy revealed HGD, and I immediately booked my surgery. Unfortunately hidden behind the HGD was a stage 2 tumor that the pathologist said likely wasn't... [ more ]
Jan Dollar Yes, that sort of normal can be expected. However, understand that in the early adaptation phase, it may be as bad as a UC flare, without all the bleeding. The difference is that it gradually improves and it is more predictable. I had a high frequency and urgency those early months, but I could delay a bowel movement an hour or two, which was not possible with full blown UC. Two decades later, I still like to know where the nearest bathroom is, but do not consider myself a bowel cripple. I... [ more ]
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J-Pouch ForumsK-Pouch Korner
How Many Times Can a Pouch be Redone?
C Creampuff
Myriam Thanks. My intestine is olaced right above the stoma so the bump is because of this...not sure if real word is hernia...but now the hole being too large the valve moved up by 1 inxh..they brought it back down and stitched the skin aroung because was leaking... Hope it was hekp..they hope the skin could rebuilt and close the entrance more but but many questiobs will i still be continent... If need to refix or stitch the valve under can they do it without majot abdomen openings... i want to... [ more ]
JLH myriam by prolapse do you mean that the valve is outside of the stoma? Or is it that the stoma sticks out, but your valve remains continent? The reason why ask is I have the latter condition – – a bulge sticking out from my tummy – – and the problem is a hernia right next to the valve. I'm scheduled for surgery, which will reinforce where the hernia is, in December. I am wondering if you have a hernia or if this is how your prolapse started. Sorry about your condition and I hope your doc is... [ more ]
skn69 I PMed you Myriam... Talk to you tonight. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
IBS
G GraceB
claire There are great Facebook groups. The Monash university website and you tube videos as well as their low FODMAP diet for IBS app may all be of interest also x [ 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 ForumsGeneral Discussion
Helpful article on Turmeric
Scott FScott F
MIKEEY Thank you so much, will give it a try, however, right now going through some rough times with another problem my doctors have found, nothing to do with previous problems. Take good care, and God Bless. [ more ]
Winterberry If you want to try turmeric to see if it will help your inflammation, try to buy the fresh turmeric root and grate it into your cooking, as you would fresh ginger root. The turmeric root can be wrapped tightly in plastic and stored in the freezer for a long time and used as needed. You can probably find it at super health food / organic stores or in Asian grocery stores for under $4. The capsules from health food stores can cost three times as much, and the powder can be a bit expensive if... [ more ]
Edie A. ❤️
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J-Pouch ForumsHelp! Need advice now!
Foley Catheter issue
R RML613
CeeeeCeeee I'm female and I cannot control things so that I either urinate or defecate. I end up performing both functions at the same time......no matter what! After all of these years.....since 2002.......I've given up! Easy for me as I'm seated on the toilet for both functions. I don't think I would ever be able to urinate standing up with my J-pouch. Only time I have a problem is when I have to given a urine sample. I cannot give a "clean catch" unless I catheterize and I've forgotten how to do so! [ more ]
RML613 Well, for the record, and for "posterity"- that is - searches on this site for painful Foley Catheter and J-pouch, this is what I found. At least in me, activity in the pouch seems to trigger a bladder spasm which is very, very unpleasant. If the catheter is short term, i'd just drink to avoid the pain. Otherwise, eat, and when the time comes, (likely shortly after eating), ride out that pain seated, and as the pain subsides, engage muscles to relieve the pouch. Once the pouch is emptying, I... [ more ]
Jan Dollar Gee, I don't know. Enemas maybe? Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch Stricture/seized/closed
JS Jpouch Stricture
Scott F Jan has offered several important insights here. Sometimes we're obliged to weigh alternatives which are each riskier than we'd like. It's critical in these cases to try to maintain a rational approach to all of the factors, and not get distracted by the smaller stuff. For example, Jan's point about getting well first is clearly the Most Important Thing. After that you consider your options. [ more ]
Jan Dollar Another item to note is that in the article, 30 days off biologics is what it considered reasonable. Since dosing with Remicade is 6-8 weeks apart after the initial induction. Performing surgery between doses will give you that 30 day window. When I was on Simponi, the dosing was monthly, so I just delayed my next dose after surgery for a couple of weeks. But, cross that bridge when you come to it. Get well first, then worry about take down later. Jan [ more ]
Jpouch Stricture First, let me reply to Scott Thanks so much for that article. Very interesting read and obviously something to strongly consider. It makes sense to me. That was my first thought that having any type of bowel surgery while taking a TNF medication could be dangerous. In response to Jan thanks for your feedback as well. I'm glad your still here and always appreciate your feedback, after all, I am going with your suggestion on the Remicade now while still wearing the pouch Obviously, I will be... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Sore around stoma
Melissa JeanMelissa Jean
Former Member After using ConvaTec products for many years, my Stoma Nurse said they wouldn't be suitable for the loop ileostomy and, like a fool I trusted my Stoma Nurse advice and persevered with the stoma products provided by the Hospital; I endured nothing but problems; eventually I reverted to using the ConvaTec products and what I relief. I never had any issues when using the ConvaTec appliance with the loop ileostomy. I too was concerned whether the pouch/bag/wafer/flange or whatever would stick to... [ more ]
Melissa Jean Thanks I will look in to that! I have an appt with the ostomy nurse today as I can't keep a seal and have changed the bag about 10 times in 24 hrs. I'm guessing due to raw skin and not being able to stick to it. [ more ]
Former Member If the paste you have mentioned, is a filler which helps seal the wafer to your skin; that kind of paste will normally contain alcohol, which will sting and burn like crazy when applied to broken skin. I endured the same as yourself whilst awaiting takedown and after trying many creams and the powder, the only product which provided near instant releif, healed and protected my skin within days, was ilex protectant paste. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch, thyroid surgery, and difficulty emptying ...and coffee ? (maybe)
S supercrunch
lablover Glad things are improving!! [ more ]
Jan Dollar A quick response like that pretty much tells your story. Hopefully, by the time you have your follow up appointment it will be taken care of. Glad you are improving. Jan [ more ]
supercrunch Thank you all so much for your advice. I gave up on Thursday and called my surgeon, who thinks I may have pouchitis or cuffitis. She put me on Cipro and I have an appt in two weeks. After one dose of Cipro, I could fully empty my bladder again in one sitting and my abdominal pain and gas pressure was gone. Now on the third day I can empty my pouch much better, and sometimes fully. I think we're on the right track. [ more ]
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J-Pouch ForumsGeneral Discussion
Benefit from Fruits and Vegetables
B bwils
Former Member ❤️
GraceB Thanks for all that info I can always count on everyone. Now if I can only gain some weight. Does any one have a problem eating foods such as regular yogurt, cream cheese, sour cream any food that has fat content or beans, such kidney, chic peas, baked beans. lentils ,raw veggies. It seems when ever I have anything in that group it just does not agree with me. I get symptoms of having pouchitis. Grace [ more ]
Bobish +1 for the soup.. boil it up and blend it. Job done. I have kale, spinach, carrot, celery and sweet potato with a bit of stock and a pinch of salt. It's quite nice and lasts for 2 to 3 large servings. Usually I have soluable fibre like 30 mins before the soup just to thicken stuff up a bit. As Scott says, digestion occurs in the small intestine, the colon is only used to absorb water, so if your not getting your nutrients it's probably not pouch related. I'm sure you're doing fine though [ more ]
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J-Pouch ForumsGeneral Discussion
Pain relief
mfromfro
mfro Thanks. The stool when I was good was somewhat solid, and gas would pass behind it and clear the pouch out for a few hours. I had a fairly normal life. Now since the stricture has gotten tighter I just have liquid stool, and only pass gas when I lay on my side. I think maybe I could tolerate a little fiber and some slowers, but I am cautious of getting shut down as happened before with another stricture that was resected. This is not like that yet, no vomiting or anything, just dribbling and... [ more ]
Scott F Direct pain relief and narcosis from Lomotil is very, very close to zero. OTOH by slowing the bowel it would have reduced uncomfortable pressure on the stricture. You don't describe your stool consistency, but if you can find the thickness that most easily squeezes past the narrowing, then maintaining that is very valuable, particularly if you can maintain it along with a bowel slower. Ways to manage that consistency include water consumption, soluble fiber, and food choices. This is more of... [ more ]
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J-Pouch ForumsPouchitis
hemorrhoids w/pouchitis
R raphael
DarrenKS I have experienced them on and off for years. For me they generally correlate well with frequency of how often and amount of time spent sitting on the commode. They always seem to resolve on their own whenpoichitis symptoms lessen. [ more ]
Scott F If you are straining on the toilet when pouchitis develops then that would explain the hemorrhoids. [ more ]
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J-Pouch ForumsGeneral Discussion
stools vary widely
N NurseKaren
averyo99 I have found if I take Metamucil every morning it helps my stools fall into more of a routine. If I don't, I'm more all over the place. I also take Immodium now to get through the night, although I used to try to avoid it. Sometimes things are just weird! One minute fine and then the next day I run into problems! [ more ]
NurseKaren I believe the thinking is why treat the whole body with all the myriad side effects of an oral med when the problem is right in the pouch, but I guess you are saying maybe the issue begins further up the line? [ more ]
twinkie ❤️
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J-Pouch ForumsGeneral Discussion
Cuffitis/proctitis and arthritis
SaffSaff
mac Been battling the enteropathic arthritis for a couple of years. Both GI and Rheum MDs felt if I could get the chronic pouchitis/GI symptoms under control that the joint pain would improve. Between the two of them I'm currently taking Hyocasamine, endocort and Imuran. Took a lot of adjusting of meds to get off the prednisone and hoping to stay off. Am still on rotating antibiotics. Do have a sulfa allergy so that takes some things off the list of options. Next step is biologics if this... [ more ]
Annikki I have a healthy pouch and no problem and have Enteropathic Arthritis with flares. [ more ]
Jan Dollar Well, here's the thing: If you have a spondyloarthropathy, it follows its own flare and remission pattern, often independant of the gut flares. This is why it can precede the onset of IBD by years or decades, or manifest long after colectomy. The peripheral arthritis of IBD tends to coincide with IBD flares. And yes, you can have both types of IBD related arthritis, and osteo arthritis too. This just makes it pretty near impossible to completely sort out. So, you just go with what your doc... [ more ]
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J-Pouch ForumsPouchitis
Immune system moderator.
O Orphius77
Scott F When Cipro began to lose effectiveness for me adding Flagyl did the trick very well. [ more ]
DarrenKS Hi Graham and others. I face similar challenge - after 10+ yrs using Cipro as my primary tool in fight against pouchitis, it seems to be losing effectiveness. Am considering going the immunosuppressent route (many yrs ago took IMuran for 1 yr to control chronic. UC flares). A bit nervous about it for all the obvious reasons, but it hasbecome a quality of life decision. Stay tuned... [ more ]
JJA I take immuran to tamp down the immune response AND I also take antibiotics (I rotate Levaquinin and rifaximin every 2 weeks). Antibiotics alone didn't do it, but the combo works. Eventually I stopped the antibiotics for awhile and my pouchitis symptoms flared, but the combo works like a charm for me, going on 3 years now. [ more ]
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J-Pouch ForumsGeneral Discussion
Is Cipro or Flagyl making me sick?
kmbr108kmbr108
Jan Dollar I agree with Scott. Both Cipro and Flagyl can be equally effective, or not. It just depends on what is needed in your body at any particular point in time. Plus, there's no guarantee that either one will be effective or remain effective over time. Jan [ more ]
Scott F Cipro works better for some folks, Flagyl works better for some, and some get equal benefit from either. If a medication makes you ill then it may not matter how well it would have worked had you been able to take it. [ more ]
kmbr108 Jan Dollar or anyone else that might know... Does Flagyl work as well as Cipro? I ask because I stopped taking Flagyl because I thought it was making me nauseous, but when taking Cipro alone I discovered that that might be the culprit. I was wondering if I switched and stopped taking the Cipro and just took the Flagyl if it would work just as well. Anyone have any experience or info on this? If so, please let me know. Thank you!!! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Terrible rectal birning
MIKEEYMIKEEY
LibertyJ Thank you for the prayers . I appreciate it. It was a rough patch, but I am doing so much better... working on "training" my J pouch so I don't have to go to the bathroom 5 minutes after I start eating . Definitely try the baby oil & cornstarch.. those two were lifesavers for me... Sure hope the steroid cream will help you. [ more ]
MIKEEY Yes, I have been tested for fungal infection. My doctor has ordered me steroid cream for my rectum , so hope it helps everything else has not including calmoseptine, just told it is bad irritation. Thanks so much. [ more ]
Jan Dollar Have you ruled out a fungal infection in the anal area? Chronic use of antibiotics can do this. It can be very painful. Try OTC antifungals for a week or two, then call your doc for a prescription, either topical or maybe even oral. Jan [ more ]
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J-Pouch ForumsK-Pouch Korner
Marlen catheters in Uk
M maisy1
Wendy Anderson Thanks everyone for all the positive feedback. I really hope this is successful, I can't afford to cause any damage to my valve as it is just hanging in. The Medina catheters are just too stiff. Will keep you all posted. �� [ more ]
Adroen After checking old e-mails it was indeed Stomabags.com that I had ordered through! Good luck Wendy. [ more ]
Adroen Haha! I started that last post before Mary(thanks Mary) had posted, but that was the place I was thinking I'd got the stuff through. I will have to check old e-mails to find out for sure though. [ more ]
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J-Pouch ForumsGeneral Discussion
When to call it quits?
C Clark_00
Jo in Charlotte Bill, thank you so much for your help. I have two excellent surgeons I'll speak with about this - one in Charlotte, the other at Wake Forest Med Ctr. Jo [ more ]
BillV Jo, BCIR stands for Barnett Continent Intestinal Reservoir, a modification of the K pouch that has a collar of intestinal tissue to better stabilize the valve. Both the BCIR and the K pouch have a high success rate (about 94%), high patient satisfaction and work the same way. I must caution you that many surgeons are either not knowledgeable about these procedures or may speak negatively about them. Hopefully, your surgeon can give you some positive feedback. Both of the continent ileostomy... [ more ]
Jo in Charlotte Can someone please explain what BCIR is an acronym for? Is this the K pouch? I'm new on here and need info to ask the surgeon who removed my colon and built my J pouch. I see him this Fri to discuss end ileo vs K pouch. Thanks for any info. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Recovery after colectomy/ileostomy
Melissa JeanMelissa Jean
Winterberry Hello, Gold. It may take weeks before your pain and BMs settle down to manageable. Are you using Imodium to control your extreme frequency of BMs? That was the first thing my surgeon told me when I was having too many BMs: Imodium up to 8 tablets per day, no more than that. The pain you are having may be from the surgery because it is very early days post reversal. There is swelling inside and your new plumbing is trying to sort out how to work after weeks or months with an external bag. I... [ more ]
Gold Hi All, I am a 54 year male, living in Michigan. Had UC for 22 years, last year (2016) had sigmoid part colon removed, was diagnosed with non-hodgkin Lymphoma, had 6 cycles of Chemo, in March of this, had total colectomy, was diagnosed with Colon Cancer, had 6 cycles of chemo, On August 4th, I had Ileostomy reversal surgery. Since than I have Rectal pain, and almost 30 BM's/day. When will the trips to the bathroom get better? Thanks [ more ]
Melissa Jean Thank you! [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
When to call it quits
JI Jo in Charlotte
BillV JO, I second your doctor’s suggestion about giving your pouch more time. You may wish to get a second opinion from a doctor who has lots of experience in dealing with difficult j pouch problems. Cleveland Clinic is one place to consider. You should also read recent posts on this forum with a subject heading like yours which can be found at: https://www.j-pouch.org/topic/w...9#564965618996802709 . I posted two responses there that give more information about the k pouch and the BCIR. My first... [ more ]
Scott F This sounds miserable, Jo. Have you ever tried a course of Cipro? Also, ironically, octreotide can cause diarrhea for some - have you tried going without it for a period of time? Would you have accidents if you spaced out the bathroom trips more, or would it just be uncomfortable? [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
burning and red raw
MN marc nolan
jhills I used to have this so badly and it hurts like heck. My cause ended up being "Dairy in any form" My dairy allergy is so bad I have to stay away from the beef too. Freaks my system right out and even bleed. I can do other meat products fine just nothing from a cow. If I have to have a dairy fix, I Must take it with a digestive enzyme! This helps my system break down the dairy it can't digest. It comes in chewable form at an all natural store or pills to swallow. Try going with out dairy for a... [ more ]
Winterberry Hello, Marc Nolan. Have you seen your doctor for a scope to rule out pouchitis? Or could be a stricture that is stopping complete emptying? There could be some minor leakage and residue that is causing the raw burning. A bidet squeeze bottle or bidet attachment to your existing toilet will help heal the burning. [ more ]
See all 2 replies...
J-Pouch ForumsOstomy & Skin
Long term disconnected pouch
SaffSaff
TE Marie A j-pouch scope is a simple procedure so I am wondering why your doctor thinks it isn't necessary. There could be other things wrong besides cuffitis. It might save you from having 2 surgeries instead of just 1. Your rheumy has a good point about seeing if these treatments clear all up. [ more ]
Saff Hey friends, so I've seen two specialists since we spoke - bowel surgeon suggests we could try 'pouch advancement' (to remove rectal cuff..) possible cause of problem. I do have some blood stained discharge from pouch. He didn't think it was worth doing a scope as the management options would remain the same - he doesn't think that any of the available treatment for diversion colitis/ cuffitis are currently effective. So removal of cuff (trial 1) is his favoured option. If that doesn't help... [ more ]
TE Marie Please let us know how your appt. goes. [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
In pain
R Rhianne
Scott F This sounds like an anal fissure. They are generally treated with nitroglycerin, nifedipine, or diltiazem applied to the sore area. While you are waiting to see your doctor, sitz baths may help. Try not to let your stool get hard, and try not to strain on the toilet. It can take a lot of patience to get through this - good luck! [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Pouchitis/Autoimmune Disorder
H Hopkins
Hopkins Thank you for the info. I am open to any tidbits of information. It is definitely a learning experience. I appreciate so much that you took the time to respond to my post. [ more ]
Janiep I agree with Scott and I must say that VSL#3 DS TURNED MY LIFE AROUND! I also stay on a maintenance dose of 500 mgs. a day of Cipro and this cocktail works for me. I know many have said that Cipro is a dangerous drug but it's worked for me for about a year. If it starts giving me a problem I will find another medication to keep me comfortable! Can you take Doxycycline? Not sure if that would help but I think I saw that it did helped someone ... I'm just not sure where I read it. I would try... [ more ]
Scott F There are only two dietary factors that seem to pan out at all reliably in pouchitis. One is that a *very* low carbohydrate diet seems to be helpful. Many people find it difficult to sustain such a diet, and start making up stories about the carbs they don't choose to give up. The other is probiotic supplementation (the best-studied one is VSL #3 DS). I take a high dose of VSL, and I do find that it makes an appreciable difference. There are also people reporting success with a low FODMAP... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Nausea
Melissa JeanMelissa Jean
Melissa Jean Thanks! [ more ]
Scott F Xanax is unlikely to cause nausea, but Toradol can often do it, and so can Imodium. Nausea can also be a symptom of gastritis. [ more ]
Melissa Jean I'm just taking Imodium, fiber capsules and occasional toridol for output. I stopped pain meds other than Tylenol. I did start xanax though because this whole thing started about of anxiety. Maybe it's the xanax. [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Abcess at anastomosis
LA Leila airhart
Leila airhart Trying now to get an appointment at Duke with an colon rectal Dr who has some experience with these abcesses. Thank you Jan! When I first got my surgery in 2000 there was no one to talk to. Our pouch health us our life! [ more ]
Leila airhart Saw one today and he had never seen one and wanted to leave it alone. Need Dr in NC to work on it. Will try sending info to the colon rectal Dr who didn't know what to do to find one. I only have two inches left of rectum. Thank you [ more ]
Jan Dollar These are treated by drainage. I had a drain inserted through my butt cheek, under C-arm fluoroscopy by an interventional radiologist. You need to see your colorectal surgeon. Jan [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Low Carb Diet
mamaswansmamaswans
NurseKaren Low carb--avoiding white foods and sugars should not negatively effect the pouch. I am always and forever on a modified low carb diet. I do eat fruits and veggies, not much meat. Chicken maybe once a week, fish once or twice a week, red meat maybe once a month. I eat eggs, cheeses, fruits and veggies, yogurt. Lots of water, tea, coffee. I too do it for weight control, ever since menopause if I eat sugar or "white foods" I gain weight immediately. I am also gluten due to celiac so that makes... [ more ]
mamaswans UPDATE: I am in Day 7 of the Keto diet (thanks Jaypea!) I feel FANTASTIC!! No burning at all and only occasional itching - not daily as before. The peripheral edema is resolved. I have lost 11# of ugly water weight! I have a lot more energy and I'm not hungry! I don't feel sluggish or bloated! I will keep you posted as I go. Things get better every day! [ more ]
JB788 I have been on a low carb diet and it's absolutely fine on my pouch. I do eat heathy carbs like sweet potatoes and fresh fruit, but stay away from all the refined white sugary ones, rice, white breads and pasta. I have had no issues and feel so good fueling my body with healthy nutrition. I follow the 21 day fix diet along with daily exercise and feel great! Good luck to you!!! ❤️ [ more ]
See all 16 replies...
J-Pouch ForumsHelp! Need advice now!
Diarrhea .
E Enterin
Enterin I understand, thank you. I continued to drink the therapy, I will consult with a general practitioner for as long as possible. [ more ]
Scott F An antibiotic's job isn't done when the symptoms clear up. It has to be taken long enough to usually prevent the problem from coming back. [ more ]
Enterin ❤️
See all 18 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Period via Anus! Does FAP mean IVF?
K Kita
KatSydney Hi, Sorry I can't help you too much as I don't have kids but I think that the main reason people have IVF is so that they can do genetic screening and stop FAP being spread to their children. I have FAP and it's more than likely the route I'll go down when I get to that stage (it was also previously advised by my surgeon). Also I haven't noticed any change in my period since my surgery (I had my stoma removed in May last year). Katrina [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
marijuana pills with j pouch and IBS
MIKEEYMIKEEY
MIKEEY Thank you, I am unable to take flagyl , it makes me very sick. I have spoken to my GP doctor and it seems that now everything now seems to be doing very well for me. Again, thank you so much and God Bless. [ more ]
maggies4 Hi Mikee. I see you are from NY. I live in LA, CA. Who did you get these scripts from? Your GP or a GI - usually Flagyl is given first. Please ask you doctor for another script. The hybrids they make today are amazing medically. They actually have so many different hybrids, including ones that keep you alert. There are many scripts that are given that are excellent for pain, and like everything else you will see what works for you. Do some research and see what script would be best for you. [ more ]
MIKEEY Thank you [ more ]
See all 8 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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