J-Pouch ForumsHelp! Need advice now!
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J-Pouch ForumsHelp! Need advice now!
with my pouch redo 6 years ago i had mucous that would leak, when connected i still have a little leakage sometimes unfortunately [ more ]
My surgeon assured me that the mucus discharge prior to the take-down procedure was not related in any way to ultimate function of the j-pouch. [ more ]
I'm glad it went away. Thank you for your quick reply [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsHelp! Need advice now!
Have noticed a big decrease in bowel movements since taking two teaspoons after a meal sived into a small drink.and the bowel movements are more formed and I feel fuller for longer.will definitely keep using Konsyl. [ more ]
I just read you take psyllium after a meal.I was taking it before a meal.Ive just started today so see if it helps.I seived two teaspoons into a small cup of electrolyte drink. [ more ]
thanks [ more ]
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J-Pouch ForumsHelp! Need advice now!
From talking to fellow patients from our infusion center, the only booster reaction was another 70-year-old who also did not have a reaction to the second shot. Since you already had a reaction my guess is you will be fine. Please don’t avoid the booster. It is very important! [ more ]
Yup! I had the shot around 9am. By noon I had to cancel all my virtual meetings and go to bed where I slept for 15 hours (getting up to use the bathroom a couple of times of course). Then I had a headache and was tired for three days. Compared to the first dose, the second was worse and now that I need a booster I hope it isn't EVEN worse, but it may be! [ more ]
Luckily, the reaction ended by the third day. I suspect it was important that I had a reaction to it, too! [ more ]
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J-Pouch ForumsHelp! Need advice now!
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Yes! I agree with all 3 responses! I don't leave the house in the morning or get on the PHONE until I go. If I must leave the house early, I don't eat b4 I leave and take A 20g protein bar with me and eat after the meeting or shopping, etc.I usually try to go before I go to bed so I don't have an accident. If I feel I might need to go during the night, I take half an Imodium. But I always wear a LONG thin ALWAYS pad JUST in case. If I go out to eat dinner, I hate it but, I frequently end up... [ more ]
HI Angie. I've had my pouch for 27 years and find that when I am most anxious about having to use the bathroom (malls, long meetings at work, airplanes, at a friend's house for dinner) is exactly when I get this feeling like I NEED to use the bathroom. I believe that it's a bit of a Pavlovian response for me because, like you, I'm never rushed about it in the comfort of my own home. Even working from home during Covid has been telling because I hardly use the bathroom at all during the work... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I've had mine for 27 years and now have straining and am not fully digesting a lot of food. I had a scope done and found out the pouch outlet is less than 5mm, smaller than a straw, due to scar tissue. I have a consulting in November to determine next steps (pouch revision or removal). Honestly, at this point I'm prepared for either. It's a been a good run for 27 years with this pouch and I've never been limited by the pouch. I kind of expected issues after 50 years of age. I just want to be... [ more ]
regarding "Floppy Pouch Syndrone " excerpts from a recent Lancet article, Diagnosis and classification of ileal pouch disorders: consensus guidelines from the International Ileal Pouch Consortium citation is below . . . Various forms of extrinsic pouch strictures can occur in patients with restorative proctocolectomy and IPAA or continent ileostomy. Floppy pouch complex has increasingly been recognised . . . . The phenotypes of floppy pouch complex are best shown with contrast pouchography,... [ more ]
You are welcome And I pray that too Keep me updated [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsHelp! Need advice now!
Not sure about what will help you but heating pads are my best friends. I do not use hot-water bottles (bad experiences with them opening up). I now use cherry-pit heating pads that I heat for 3 minutes in the microwave. I have had so much success with them for both cervical pain and lower back pain that I am making them myself...no, I am not eating that many cherries and spitting out the pits...I just bought a 50lb bag of them...I make tiny cotton pillowcases, fill and quilt them and sew... [ more ]
Gas pain are no joke! I am currently on postop day 7 and still having some pain when using the toilet I am in tears most of the time..the abdominal pain has subsided and I can easily move around better. But using the toilet to try to pass gas or anything is no joke!! I have tried walking around to c if it helps with release of gas but hasn’t been helpful, I found bending over while on the toilet seems to help with passing gas and having a bowel movement. I am currently having lots of pain to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Glad it was helpful. Oh gosh, good pouch function early after takedown? You mean after the colectomy? That's a while ago, all I do remember is I had VERY frequent (loose) BMs from the get go. And that lasted a while. Then for several years I had much more normal output, in terms of frequency (stool itself continued loose.) I did have some relief after the initial banding, but as I wrote, I'm afraid it didn't last very long. The reason my GI at Weill Cornell sent me to Dr. Shen was because I... [ more ]
BNellNY, Yes, very helpful. Thanks for sharing. Can I ask did you ever have good pouch function (eg early after takedown)? Did you have near immediate relief with banding? Finally, what were/are your symptoms of FPC and what is your stool consistency like? I need to keep mine watery to empty. Thank you for entertaining all my questions! I haven’t found anyone else with experience with FPC and banding. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hello Jules, I was wondering what happened with your surgery. I am in a somewhat similar position and have had so much trouble deciding what to do. My pouch failed after 15 years. Cheers, Sarah [ more ]
Jules, the stretching that the surgeon is referring to is likely whether the remaining intestine will reach the lower pelvis after the failed pouch is snipped off the end. As long as they don’t pull it too tight, impairing the blood supply, it would likely work fine. They would have to have your permission to explore that option during surgery. It’s uncomfortable to enter surgery without knowing exactly what will be done, but sometimes that’s the only way to get the best possible result. [ more ]
Thanks for the advice Scott. My current pouch is also very dilated so don’t think they can fix it. My surgeon said she can try to form another one but not sure if it will stretch enough so thinking I might go with the end ileostomy. Thanks for for the info Bill. I was never given these options so not sure if there are any surgeons here in south Australia that perform these procedures but will keep researching! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hello, People deal with medical issues on their own terms. I've been in your shoes; it's a difficult decision to give up a j-pouch and go to a permanent ileostomy. In 2007 after 16 years with the j-pouch and complications from a vaginal/j-pouch fistula, I had my j-pouch removed, my anus closed up, and now have a permanent end ileostomy. My ileostomy is on the left side of my abdomen just BELOW my waistband. The ET nurse and I found the perfect spot together. If a person is working with an... [ more ]
Hey Gremlin, I know this post is a couple of years old, I was just wondering if you're still around and how you're doing now? My situation and feelings about it are very similar to yours, I've been struggling with my fistula for about 2yrs now and it's still getting worse. The psychological side effects of a complication like this are almost as bad as the physical ones and like you, I've had real trouble trying to talk to anyone about it in detail. Anytime I have actually tried no one seems... [ more ]
Hello! I don't have any suggestions, just commiseration. I had a minor fistula that I lived with for about 10 years (my surgeon did not recommend intervention), until it spontaneously healed (no idea why)...for about 2 years. Unfortunately, when it recurred about 6 months ago, it was much worse and is causing me considerable grief. (Also chronic yeast infections--anyone else dealing with this?) I am also sort of avoiding dealing with this medically as I'm afraid the doctor will finally... [ more ]
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J-Pouch ForumsHelp! Need advice now!
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Thanks PouchLogic, I remembered that I used to use grape juice a long time ago so that's what I did and thankfully it opened up. [ more ]
Flush it out. If you are still passing stool then try to continue drinking and hopefully flush whatever is bothering you out. Go slow and try not to make it worse if it is a blockage but fluids are a safer bet. [ more ]
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J-Pouch ForumsHelp! Need advice now!
PSJ, I had surgery last week. They had to go in for other reasons as well (phantom gallbladder pains that turned out to be stones, inflamation and infection in the common bile duct) and a cyst by the liver. While my surgeon was in there he inspected my historic occlusion site (an old colostomy site) that tends to build adhesions and block me. There were some so he zapped them and he found a new site, just below my liver that had adhesed a loop of bowel to my liver...everything was done... [ more ]
PSJ: I am kind of in the same situation with my J Pouch inlet stricture. I have the big black blockage cloud hanging over my head, and am relying on Remicade and Entocort to keep the inflammation down at the stricture site so that food can pass. The truth is that I have been strictured in that area for a while, and no blockages so far. I did have around 4 blockages right after surgery due to adhesions and/or surgical swelling including the dreaded NG tubes and the usual "fun and games". My... [ more ]
Good to know Scott but it seems I was "lucky" in that the blockage was due to inflamation that steriods and Flagyl seem to have fixed so far. Everything looked much better yesterday on my scope. I hope it stays but I will be much more aware of what I eat from now on. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Andreita, My surgery went fine. The surgeon saw something odd that wasn't there one month prior for the pouchoscopy. There were 4 tribeculations on the pouch. They weren't there before. She showed me pictures of them. Hopefully time will heal them and strengthen my pouch. Have you ever heard of anything like this? How did your surgery go? Susan [ more ]
Hi Andreita, I wondered if I could send you a private message? I'm sending you healing thoughts and energy! 🙏🙏 [ more ]
@Susan L how are you? How did your surgery go? Who is your surgeon? Here's a little bit of my story. I don't know if it's relevant but I had a J-Pouch redone last week with Dr Remzi. I'm waiting for take down and I hope it will be well. My J-Pouch wasn't punctured though, in fact he was able to keep it. In my case, the rectal cuff was too long and my J-Pouch somehow twisted. [ more ]
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J-Pouch ForumsHelp! Need advice now!
So, just to close the story on this, in case anyone reads this in future and has a similar issue -- It's not c diff. The pain was from a lot of gas plus probably some inflammation.I'll know more after I see the doctor but the tests today confirmed it's not c diff and that the pain I'm having isn't dangerous. That's a relief! [ more ]
Thanks for the quick replies. Very grateful to have a little company right now. Jan -- I can't take Cipro because of a drug interaction and I have had a bad reaction to Flagyl (heart palpitations) in the past. So I wound up with Augmentin which I haven't taken before ever. Part of what I'm feeling now feels like painful gas, which is odd since I very rarely have that, and certainly not for hours. Have had my pouch for 5 years and pouchitis twice -- each time it cleared up quickly. Once,... [ more ]
Sure it could be C. diff, and Augmentin would make it worse. But it does not sound like it is worse. Why did your doc not prescribe the typical antibiotics: Cipro or Flagyl? Since you were going with the assumption of pouchitis, those would be the go-to antibiotics. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thanks, Jen. You know, I have always wanted to enjoy pot, as most everyone else seemingly does. Yet every time I've tried it, I just sit there, waiting for its effect to wear off. It just doesn't agree with me. But yours was a good idea. [ more ]
I have those and it turns out I have a stricture at the outlet of the pouch so I imagine it is spasming due to trying to get stuff out that is very small. While you are waiting for a solution I recommend something I never thought I would ever take and that is vaping marijuana. High THC. It stops the spasms for me while I wait for my surgical consult for the stricture (thanks for the delay covid). It's the only thing that works to stop them within minutes. Of course, I'm high as a kite and... [ more ]
Thanks. I'll ask about that. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Has anyone else tried the ilex cream as described? Did it help?? [ more ]
I have reoccurring anal fissures, now with an external/internal fistula next to the rectum. It is soo bad! I get no relief, and dont you dare mention proctofoam!! That stuff is the worst! I use hemp oil or CBD oil on the outside, and just barely inside. My dr will do scope and insert botox and cortisone every 3 months to help with the pain, inflammation, and bleeding. I notice when i flare it is very painful clear up to my lower back and gas is incredibly painful to pass. [ more ]
From time to time I experience an anal fissure , which always appears to be at the same spot within the wall of the anal sphincter. What you're about to read may sound uncomfortable but to alleviate the discomfort and excruciating pain; I can assure you, it isn't. I've had great success by applying ilex protectant paste to the inside of the anal sphincter. When a fissure is suspected, after cleansing and after a BM; I wrap a wet wipe around the tip of my finger and insert it into the anus; I... [ more ]
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J-Pouch ForumsHelp! Need advice now!
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Skin tags, if that is what they are, can be easily and quickly burnt off by a competent dermatologist. I get a lot of them around my neck and have been having them removed regularly over the years. That said, if they are granulation, little white bumps or occasionally red ones that grow only on the red tissue, (something that I get a lot of on my stoma because I have a k pouch with an abdominal stoma that I intubate through) due to the constant rubbing of the catheter. I burn them off... [ more ]
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J-Pouch ForumsHelp! Need advice now!
https://www.j-pouch.org/topic/...6#672785578330031216 Hi. Yes, I hadn't had one for a decade. But just yesterday had one and it looks like I have a very tight stricture on the outlet of the pouch. Less than 5mm. So I have a surgical consult. I'm 50 so I'm leaning toward taking out the j-pouch. I'll find out more in the next two months! FYI - the reason I didn't have a scope is that I was never having any issues with my pouch until now. G.I.'s told me if it ain't broke, no need to scope it. [ more ]
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If you don’t have a regular ophthalmologist you *might* get reasonable attention at an ER (yes, I know how awful that sounds) - especially if you can go to a teaching hospital. They’ll generally have an ophthalmologist on call, but it could be a long, expensive process. Alternately you might get results by pressing for an urgent referral by the doctor who is telling you to stay on prednisone. I hope the whole thing turns out to be no big deal, but hope isn’t a strategy. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Oh okey! Do ypu suffer from adhesions today? And/or blockages? [ more ]
My MD group at OSU will NOT do surgery even with repeated full blockage. They said bc more adhesions form causing more complications and blockages! The adhesions continue to grow over time. My group used xray contrast media through my NG tube plus IV magnesium. Took xrays every few hours to follow movement. It took 4 full days to clear my blockage. Hospitalized for 5 days . [ more ]
Or could something like yoga/stretches move the intestines away from the adhesion? [ more ]
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J-Pouch ForumsHelp! Need advice now!
I was on HCTZ for a while and did not have a problem with dehydration. Not all diuretics are the same. Jan [ more ]
Hi Linda, I have been on a diuretic for approximately one year as an additional blood pressure medicine - I take two other types of BP meds for hypertension as well. Additionally, I had renal cell carcinoma resulting in approximately 1/2 of one of my kidneys removed through robotic surgery in 2009. I have had a jpouch since 1992. In my case, blood pressure is controlled generally and my kidney function in within normal range. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsHelp! Need advice now!
Quite a few people here have had fistulas. You may want to do a search for those threads. I had a large pelvic abscess. It was drained with a catheter guided by X-ray. The catheter stayed in about a month. It was not a fun time. But, I am OK now and that was over 25 years ago. Jan [ more ]
Juliana, sorry I am just seeing this. I pray everything has progressed well for you. Please let us know if it was a fistula and/or what the treatment was. I had no experience to share as I was only tested for it and it was fine. I do remember the horrible pain . Hope yours is better. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Good news! Docs have oodles of info, but are short on time. Everything seems routine for them. So it is important to let them know when you feel a bit overwhelmed. If you don’t tell them they assume you are chill. Jan [ more ]
OK thanks Jan and Pouch2021 - that's reassuring, I trust your advice. I managed to contact my surgeon who also advised the same. Its a bit unnerving after so surgery ! [ more ]
The risks are pretty much the same as any endoscope, with perforation being one of the major concerns. The endoscope is small diameter, so damage to the stoma is very unlikely. This is a fairly common procedure and I am sure your GI has experience. But, be sure to ask your GI these questions so he can put you at ease. If you are really concerned, ask for a phone appointment in advance of your procedure, so you can be fully informed before you are there in a gown ready for sedation. This is... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thank you Jan and Scott. Just came out of my pcp's office. She said the same, it was just a visual observation and she confirmed a hernia. She referred me to the chief surgeon at the houston methodist colon and rectal surgery department and also offered a couple of choices closer to me home. Thank you all [ more ]
I agree with Scott. This is a pretty simple procedure. Any general surgeon could do it. You may want one more experienced, just in case something weird occurs, but there is no need to fly to Cleveland. I don’t really know much about exercise, but you mainly do not want to strain your abs. That increases intra abdominal pressure and can expand the hernia. What ever you do, it would be best to use abdominal support while doing it. My hernia was diagnosed with a physical exam. No CT scan was... [ more ]
A good local surgeon should be able to perform a hernia repair just fine. That’s also who can advise you about the size and risk of your particular hernia, and what activity you can safely engage in at this point and going forward. A good surgeon won’t be influenced by their personal interest in performing the procedure. A crappy surgeon will simply advise repair without a thoughtful discussion of the no-repair option. [ more ]
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J-Pouch ForumsHelp! Need advice now!
My j pouch surgery is coming up on the 15th this month. I am fortunate to go to what I believe is one of the best cancer hospitals in the US. City of Hope in duarte California. I have been going there for almost 4 years now. Starting of with prostate then colon and now rectal. The care they provide is second to none. Amazing staff as well [ more ]
The pouch was the right decision for me. I hated the bag, but I have always been disgusted with poop. There have been problems. A three step turned into a four due to an internal abscess. I have chronic pouchitis, but it is well managed with antibiotics. For the most part, I do what I want to do and eat what I want. My skin is pretty sensitive and underneath the bag wafer, it became weepy and inflamed. It was hard to keep the bag on and I had to spend more time prepping my skin. This all... [ more ]
See if you have a local Crohn's and Colitis Foundation in your area. They really helped me. They gave me the phone number of a patient advocate, and he helped me choose a very good surgeon in my area (in fact the same team did his surgery). He also let me know what to expect and was a very good resource for any questions I might have. He even called me a couple of times in the hospital to see how I was doing. I hope you have the same resources in your area. [ more ]
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J-Pouch ForumsHelp! Need advice now!
What helped me when things got hard was remembering that it was temporary and it will get better. Now, 4 1/2 years since takedown. I hardly think of my pouch. I've never had major issues such as pouchitis, strictures, or a fistula. I had a 2 step procedure and the first surgery was definitely the hardest. The pain was bad for about a week and a half. It took me about a month to feel like myself again. You will have leakage, so it will be helpful to have pads for after you leave the hospital. [ more ]
Have faith that everything will be okay You got this! Good luck! Keep your faith high, I have faith in you [ more ]
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J-Pouch ForumsHelp! Need advice now!
As for the symptoms you describe above it could be a blockage although my experience is that the pain steadily gets worse and is accompanied by a knotted sensation in one location. Are things passing through your rectum yet? If you are moving bowels that wouldn't be the issue. [ more ]
Thank you ❣️ [ more ]
Hi, I have had a J Pouch for almost 30 years and can eat just about anything I want. Diet is all trial and error with the individual and there is no approved one consensus diet for all. One phenomenon I have seen on this board is the emphasis on short term digestability rather than long term health of the Pouch. At your early embryonic stage of Pouch development, clearly, short term digestability is really all that matters. After 30 days or so, you may begin gradually adding new foods, one... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Could 8 liters of water be too much? The advice I read is about 3 liters for women and about 4 for men. I realize we (with j-pouches) may need more, but I would think that twice as much may be too much. Of course, if you are following your doctor's advice, then never mind. [ more ]
Protonoix and Magnesium helped me int he past. It might help you? [ more ]
Are your BM comparable to how it was before pouchitis? If they are more irregular and you're also feeling stuffed after eating solid food (besides nausea), that may be a symptom of a partial blockage. If it does not get better, I would have your GI doc do an ultrasonic scan, that's not a big deal. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Your welcome dear [ more ]
Thank you for the information!! I will keep you posted! [ more ]
I am sorry this is happening to you, I was going to suggest that it could be a blockage but since you are pooping, that is good. Glad your scope is coming up, definitely keep me updated. Sometimes calling daily for cancellations can help move up the scope surgery since some people cancel randomly. I would try calling to check around 10am and about an hour before closing, that helped in my experience get things done sooner. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I thought my bathroom problems were caused by fruits and vegetables. In the last year I was so sick and everything I ate seemed to give me grief. I had to figure it out myself. I realized I may have a gluten intolerance. I cut out gluten, drink flax milk instead of dairy milk. I take a powder called "Pure", I bought on Amazon. I take it in the morning mixed with 6 oz. of water a half hour before I eat anything. Within a couple weeks after cutting gluten and taking "Pure", I felt so much... [ more ]
I had the hydrogen breath test a week ago and today got the results—negative for SIBO. I’m not surprised but what I am surprised by is my doctor’s recommendation to try the Mediterranean diet. Seriously? Whole grains? Nuts? Fresh fruits and vegetables? I’ve not had success eating any of that since my take down in 2017. Am I being stubborn thinking my pouch will never tolerate fresh vegetables and nuts? Seems like a lot of trial and mostly error. [ more ]
I thought I had SIBO years ago and changed my diet. It did help for a while and I thought I had it figured out. A little over a year ago I started to have the same symptoms plus feeling like glass when I pooped. I had diarrhea for nine days. I could not sleep because I was afraid of leakage which I was having. I had to put a panty liner on to help with the leakage. I was grocery shopping and I had gas so bad I could not hold it back. It was long and loud. I was glad I was not in a busy part... [ more ]
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J-Pouch ForumsHelp! Need advice now!
pouchitis/ cuffitis/ pain LR quad / numerous BM day and especially night spite bland and pretty much liquid diet
I experienced horrible pain in my lower right abdomen after takedown (5/20). It took 7 months to figure out I wasn't passing gas. Sounds simple once you know it! I had several other issues to get through. My pelvic floor pt therapist helped figure out alot of the issues. I used a tens machine which helped with pain. I had to invert my body for gravity to get the gas to come out. I'm hoping that sharing this might help! My surgeon also could not give me pain meds. She suggested going to my... [ more ]
Thank you for the suggestions! I had forgotten about marshmallows - and who doesn't like marshmallows!! My surgeon / GI doctor also called in Zinc oxide, mesalamine. I started Cipro/Flagyl 2 days ago. So, I'm crossing my fingers!!! [ more ]
Marshmallows! Really help me to thicken and slow my output when loperamide isn't working. Re. the pain, I stick heat pads to my body to help sometimes 😂 (like the hand warmer ones etc).. and I always use comfeel barrier cream when my output is often/liquid as it can make me very sore ... Its not much I'm afraid, but good luck 🙃... Hopefully the antibiotics will start working soon and you'll get some relief 🤞🤞 [ more ]
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J-Pouch ForumsHelp! Need advice now!
Willoughby's is roasting their coffee in house and to my taste buds it's a very different taste, especially the dark roasts. A lot of people do like their coffee, including one of my coworkers who is a big fan, but I generally go elsewhere. I will say that Willoughby's corn muffins are GREAT, and sometimes I stop there and just buy their corn muffin and get the coffee elsewhere. They probably don't appreciate that, but they take my muffin money anyway LOL. BTW- I also usually get pizza after... [ more ]
CTBarrister Yes, unfortunately Modern is dining in, but we got there just before 12, so it wasn’t too busy and the service was quick. The Wlloughby’s we go to is at the intersection of Grove and Church. My husband is more of a coffee person than I am and compares theirs to one of Starbucks select coffees that you can only get in certain shops, such as New York City. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Wow, interesting...I know that gluten is not my best buddy and liquid dairy (milk, lattées, milkshakes etc) can be nightmares but neither were ever at the root of my blockages. The gallbladder is a very likely culprit for both pain & gas. There could be gravel or stones in there blocking things up and causing problems. Good luck and please keep us posted on the results of the tests. Sharon [ more ]
So glad you got to the bottom of this! Amazing news ! [ more ]
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J-Pouch ForumsHelp! Need advice now!
I was diverted to an end ileostomy for 6 months before I had my j-pouch removed. If you are going to get diverted please don't get a loop. I had the loop during my j-pouch surgeries and it was horrible. That is why I didn't want to go to an ileostomy and held onto my j-pouch too long. An end ileo is night and day different than and temp/loop one. You will not have to empty the bag 12-15 times a day and will spend much less time consumed by your bathroom trips. There's some sexy lace... [ more ]
I don’t know what it’s like to have pouchitis for all that long, but I’ll never forget the agony of it. I didn’t respond all that well to the antibiotics and as soon as I would go off of them, my pouchitis would be worse than ever. I hated taking the antibiotics. My gastroenterologist prescribed me a certain probiotic ( I forget the name of it), but it worked better than the antibiotics and without the terrible backlash when I went off of them. The problem for me with those probiotics was... [ more ]
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J-Pouch ForumsHelp! Need advice now!
You could really use a diagnosis. Does your gastroenterologist have an opinion? In the meantime, sometimes this pattern comes from overdoing symptomatic treatment, and cycling between overtreated and undertreated. Are you using any bowel slowers (usually Lomotil or Imodium)? If so how much do you take, and when? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Most important is to improve stool consistency. If fiber can do that for you - why not. When walking around, a short relaxing of the sphincter or an increased load of the pelvic floor (e.g. when coughing or sneezing) can lead to leakage if the output is too liquid, even more with bloating. But I think that can also be a problem for people with a colon if they have severe diarrhea. [ more ]
Fiber is inexpensive, easy to try, and close to completely harmless if used according to the directions. Why not give it a try and see if it works for *you*? [ more ]
The problem I have is leakage when I cough. I have had this happen a few times. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hello Angie, currently I use a rental device for pelvic floor exercises by electo-stimulation. A probe with electrodes is inserted into the anus. It should build up the inner sphincter muscles that are important for passive tightness, i.e. when you sleep. Basically it is similar to conventional pelvic floor exercises, where you are told to imagine pulling out a nail from a board or something like that. But you have a electric stimulation on the one hand and a visual feedback of sphincter... [ more ]
Thank you Steve ! That information was greatly appreciate it. If you dont mind what type of pelvic floor you do? [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsHelp! Need advice now!
Around 10 years ago, while still in my 40s, I was diagnosed with Central Serous Retinopathy, CSR, the cause of which is unknown, but may be tied to autoimmune disorder. It's a condition in which fluid builds up near the retina: https://www.medicalnewstoday.com/articles/320606 What characterizes CSR is a sudden vision loss. I recall what happened pretty vividly. I went into a restaurant one day, asked for a menu, and I could not read it. It was blurry. It was totally sudden and confusing to... [ more ]
@Scott21, it may be unrelated, but seeing a doctor about any changes in vision is always wise as you’re doing. In my case I was encouraged to see an ophthalmologist when I had active UC because the prednisone I was on at the time is associated with eye problems including increased ocular pressure which I did indeed develop and required treatment with prescription medication to prevent permanent damage to the optic nerve. So it didn’t affect my vision but did affect the health of my eyes, and... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I agree that 8...10 BM is an increased rate, but I had to deal with that for many years myself with chronic pouchitis and it should be no problem if you drink enough. If you say "stage three kidney disease", is this an acute / singular eGFR value for kidney function when you needed to go to hospital? I had some episodes with partial kidney failure in the past 17 years when I had severe diarrhea and circulatory problems. But that was only until my health got better with infusions and... [ more ]
Dr. Milsom was top notch - heard he retired. Have you tried bowel slowing medicines Imodium or Lomotil? That could help you retain the water. Going 8/10s is not such an alarming rate to cause such dehydration. Some on this site go 12+ and I have not heard a ton of kidney problems. Please let me know if you have tried bowel slowing agents. I think it could really help, but I would bet that you would have tried them already. [ more ]
Thank you for the replies. I have 8/10 bm per day sometimes very small because I sit down to pee and there is always some stool. My doctors are at Weill Cornell and my surgery was by Dr Jeffrey Milsom who is supposed to be one of the best. I have been on Remicade, Humira and some other stuff prior to pouch. After pouch I was on antibiotics for a while but then seemed to be okay until recent episode. While in the hospital they did a pouchoscopy and found inflammation so my doctor has obtained... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thank you for responding tonight! I’ve decided to just talk to my dr tomorrow. It happened multiple times today, but all around the same time. My surgeon told me I would never have hemorrhoids issues (unlike most pouchers) because he removed all of the rectum, all the way down to the anus. So whatever this is it’s not that. Hoping it clears on its own! I already had an appt with my GI in 10 days, but if anything more concerning happens I will contact them. I will try to remember to update... [ more ]
It’s been about 4 hours, so presumably you made a decision. One episode of blood is mostly a signal to pay attention. My first guess would be hemorrhoids. Since you also had an unusual experience of solid stool, make sure you stay well hydrated. Good luck & congratulations! [ more ]
It could be hemmeroids. I know I had them (and most women do) during their pregnancy. I actually didn’t know I had them until one of my exams when my doc pointed it out, so you may even know that you have them. Bright red blood usually indicates hemis or proctitis, but if you’re really concerned you can def call your doc. I bet they’ll prob just go through with everything as scheduled and have you follow up with your gastro a few days after. Any other symptoms? congrats on the baby!! Good... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hang in there @GS Ive had a few of those in my life as an alterated individual. It's a tough road, no doubt, but this too shall pass. No pun intended Stay strong. [ more ]
I am sorry honey, I hope everything gets better, I will keep you in my prayers. [ more ]
I’m so sorry- sending positive vibes & healing vibes your way. Please feel better. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I am so sorry about your sister, she is in a better place. I bet she is proud of you [ more ]
One of the best summaries of probiotic research I’ve seen is the CareFirst Blue Cross probiotic policy. I posted the updated location/navigation here: https://www.j-pouch.org/topic/...4#663214202801915104 Note that the research on “VSL #3” was on a product that is now called Visbiome. The current product called “VSL #3” is a slightly different formulation (that’s the one I use, for insurance reasons). [ more ]
I guess I should share my story as it is not your typical case. My sister was killed in January of 2013 and that first Christmas after her death, I had some blood in my stool. It became worse and I attributed it to stress of the anniversary and Holidays but went to my doctor anyway. I was prescribed Flagyl and it went away. The following year at Christmas (2014) the blood in the stool returned with fatigue etc. but I again attributed it to stress and I was traveling out of state. It did not... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Definitely! I am glad things worked out too! And your welcome hon [ more ]
Thanks Lauren. I have done that in the past and yes I agree on most cases but this one was different. I guess my recent visit left me scared. I’m glad things worked out but I appreciate you taking the time to answer me😊 [ more ]
Thanks Scott. I am at home still feeling drained but my blockage has been clearly slowly since this morning. I’m in Arizona. I looked to you dedicated members for my solution and it worked. This is a first for me so thanks again. I feel I’m out of the woods. Just to be safe I am continuing my clear liquid diet until I feel like myself again. I’ve gotten used to being hungry and drinking tons of fluids. You’re definitely an angel to me 😊☺️ [ more ]
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J-Pouch ForumsHelp! Need advice now!
Call your GI. At least in the US they will often prescribe a course of metronidazole or ciprofloxin based on described symptoms alone. No need for an urgent appointment and poking around in painful places (yet). Another thing to think about is the possibility of an anal fissure, as your new rectal pain sounds a lot like one. It is often associated with straining at liquid or formed stool. Hermorrhoid cream can help while you get this sorted. And, no, probiotics will not treat what you have... [ more ]
Your welcome. I personally think you have pouchitis but the only way to know for sure is to see your gastro and get scoped. I would reach out to gastro and book an appointment. Sometimes calling daily can get you seen sooner in my experience. People can cancel randomly, so i usually grab the cancellations. [ more ]
So I’m beginning to think what I have is indeed pouchitis. The only contrary things that lead me to think otherwise is that my stools have formed up and I’m not seeing any blood. However, the tailbone pain, urgency and nighttime frequency are all pointing to pouchitis. Please let me know what your thoughts are on this. [ more ]
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