Bent-ArneCould have been im gonna ask next time i meet with my gi. We don't have these words in Norway, so he might have already mentioned it, but with some other words 😂 [ more ]
ColonGoneGirlThey’ve said I have two things , one is when the original surgeon did the temporary ostomy he ADMITTED he “didn’t pay attention to that since it was temporary so I didn’t spend the time on it” (don’t even get me started with this nightmare! His nurse and staff were literally SPEECHLESS) so it would open up burning me daily (I couldn’t look at it , I had a nurse come daily sometimes 2x to change it and she said “in all the years of changing these I’ve NEVER seen one put on so badly Or... [ more ]
Pouch2021Do you know if pouch strictures (usually narrowing at an anastomotic site) or small bowel obstructions are the issue? It sounds like you’re talking about SBOs from your post. I was plagued by recurrent SBOs during the 6-7 months with my loop ileo (had one severe with my end ileo before that but that end ileo was Overall so much better). Developed an obstruction every week it seemed with the loop. The times I ended up in the hospital for pain control and decompression with NGT, my imaging... [ more ]
tfI can tell u that I'm on a antidepressant; it's a very low dose. My dr advised me it's like a maintenence drug. This disease can & will run u down physically & mentally. I have a Jpouch, in the beginning years it nearly took me over the edge. I believe in meds, definitely to relax me when it's a really hard day & night. I take vitamins too. Find a diet that fits for u & exercise is a must. Even at that it's a struggle but liveable. Best wishes & know this group is a life... [ more ]
ddIt sounds like you’re doing all the right things. I have dealt with similar issues. It sounds like you might be suffering from depression, which can cause extreme fatigue. An antidepressant may help. I was initially reluctant about taking anything, but I will say that it has saved my life. It has helped me deal with this incredulous disease. Good luck to you [ more ]
Former MemberI am sorry you are unhappy! If you ever need someone to talk to, message me. [ more ]
CTBarristerFrancesca, Although I take Remicade and never experienced ANY side effects from it, a buddy of mine who takes Humira for both Crohn's and AS reports that he feels the fatigued the day of. I think it's just temporary in his case though. [ more ]
ddI had similar symptoms within the first couple months but have now subsided. Luckily I do not have any issues since then. Good luck to you 😊😊 [ more ]
Former MemberOkay, let me know how Humira works! [ more ]
Former MemberThanks hon!!!! I needed to see this! [ more ]
rosevioletHere's another tip that might help those who have sleep issues. The advice I heard is to get ready for bed a couple of hours before going to sleep. The bright light in the bathroom while brushing teeth etc. makes your body think it's daytime again and wakes it up. Avoid bright light of any kind, including electronic devices for at least a couple of hours before slumber. [ more ]
Former MemberIschiorectal abscess and/or Fistula. It’s been over 7 years since J-pouch creation. Recently, one trip to ER, followed by two consecutive out patient surgeries within two week time frame in efforts to locate and drain a badly infected abscess or fistula; Seton installed to allow complete drainage. This is my first experience with this, I’ve had enough pain in my rear for a lifetime just in this last month. Hoping this will be a single event as I am on the mend now, however, will have a final... [ more ]
Former MemberYou are welcome! Glad you are doing great [ more ]
Danr11Thanks, both of you. This has been very informative! Luckily I have had an MRI done recently, and currently I am abscess free. My doctor is monitoring it closely and is happy with continuing the Entyvio treatment. [ more ]
Former MemberI did research this topic and I have found that they are related. Adam, a lot of people have different opinions on this topic, I would just recommend to do some research on it and make your own opinion on what you find. [ more ]
Jan DollarNo, no. I have no info indicating more pouchitis in drinkers. Gastritis, yes. Liver inflammation, yes. Alcohol can trigger an IBD flare in some people, as it is an individual thing. It does irritate the gut. Same with smoking. But some people actually had a protective effect from smoking in regard to UC. There are recorded cases of onset of UC and UC flares when a patient quit smoking. But, smoking does not appear to be protective for pouchitis or a cause of it. [ more ]
Adam21This is good into. So your experience shows higher pouchitis rates among people who DRINK vs people who don’t? I would love to know if their is a correlation between the two. I personally believe the two are connected to some extent. Or it could be just me. [ more ]
DieselAlex, I feel your pain.. I was on Cipro on and off after my takedown in 2016. After doing some of my own research and reading, I come across a lady that started taking Manuka Honey, and her pouchitis symptoms started to dissipate. So, I gave it a try, and started out on 20 UMF with 2 tablespoons in the morning when I got up, and 2 at night before bed. I have worked down to 10 UMF the past year or so, and I haven't taken any Cipro since the end of 2016. Knock on wood it's worked for me. I use... [ more ]
Jan DollarAlex, have you been tested for C. diff? It sure seems suspicious that things seemed to snowball after the course of Cipro. Jan [ more ]
CTBarristerkatenet, If you had dysplasia or cancer in your colon when removed, or a history of pouch inflammation, you should be scoped annually. Otherwise, it's discretionary and depends on whether you are having any issues or not. You still have colonic tissue (rectal cuff), and if there is that dysplasia/cancer/pouch inflammation history, you are deemed a risk and an annual scope candidate and this is just common sense. Usually cancers will start in the rectal cuff, and it should be biopsied in any... [ more ]
katenetThanks jan for the good and kind words as always you are the best dr Shen says once a year I have chronic pouchitis a stricture at the inlet dysplasia and about 3cm of rectal [ more ]
Jan DollarKate, pouch scope frequency should be determined individually, and it depends on what your diagnosis was prior to surgery, whether you have a retained rectal cuff mucosa, if you have ever had dysplasia in your pouch, and if you have ongoing pouch problems. Some doctors automatically have you come back annually. This is rather “old school” from the days when the j-pouch was new and they were gathering information. But, the procedure has been around now for over 40 years, with refinement over... [ more ]
thecrotinoYeah im feeling better now, everything i eat comes out very fast even tho i take loparomid, stool has improved a bit, not so watery any more. Im in hospital still since my wound has fistula and im on v.a.c pump to extract blood and pus so they can close the wound and get stitches. Gastro doc said that he cant treat me when wound is open, i need to be on v.a.c for 3 more days and then i can get my remicade and imuran, maybe corticosteriods idk what will he prescribe, i expect to be better as... [ more ]
TE MarieI hope you are feeling better today. I remember the first month, as being from hell, after my j-pouch was removed. It's a very serious and complicated operation so please ask your doctors about anything you think doesn't feel right. Having the fistula sounds like hell and one big complication on it's own. My largest problem was with the output. I tried every kind of pouching system over my stoma I could. The real problem was the inconsistency of the output. Besides what you are doing have... [ more ]
Jan DollarSounds right to me. I mostly wanted to pass on that getting the standard antibody tests that are available to everyone to see if you have been exposed will not tell you about vaccine effectiveness. Jan [ more ]
ytcrockpotThe only way to find out specific number of antibodies from the covid vaccine is by being in the research study groups. That’s what the research doctors told me. [ more ]
Jan DollarPotassium and magnesium are minerals, not vitamins, but that is just semantics. Hopefully you are supplementing based on your doctor’s recommendation. As you already know, potassium is critical for the electrical conduction of your heart, and overdoing it can stop your heart. If you have issues with internal scar tissue, you are better off avoiding high fiber foods and supplements. You should slow your gut with loperamide or lomotil, but only to the point that you absorb your nutrients... [ more ]
Former MemberThere is a woman on here and her name is MARZ, definitely ask her that question and she will help you [ more ]
therealstingerThanks for the replies, info, My fluids go thru very fast alright. Im afraid to slow it too much as I have intestine scar issues were they put it back together. Had 2 other surgeries for scar tissue. So Scar tissue is an issue on slowing it down too much. Fiber blocks me up . [ more ]
Former MemberWhen I first arrived here, it was confusing as heck!!!!! I got the hang of things by learning and staying on here and finding my way. My advice is that everything new takes time, I am sure you will get everything with time. That is how I did it lol. [ more ]
SteveGThe login (or your profile if you're already logged in) is in the upper right corner. That's where you also can "sign out". As long as you don't log out or delete your cookies there doesn't seem to be a limit for login time. [ more ]
Former MemberI would not eat for a while until things fully clear up and then I would stay with soft foods for a while with extra liquids. I do these tips to prevent blockages: Drink water before, during and after ever meal. Walking/moving around after I eat. And getting moderate amounts of fiber. Hope this helps love, keep us updated [ more ]
Scott FYou could always ease back into the psyllium. How about a half dose and see how it sits? I tend to start taking psyllium again as soon as I start eating. I don’t think it’s any more obstructing than soft foods. [ more ]
JHendrixThanks Scott. I got through the day without the backing up gas pain so I think it's cleared. I've eaten only soft foods. Would it be reasonable to try psyllium tomorrow or is that too soon in your opinion? I dislike the watery stool as it really aggravates my fistula. [ more ]
Former MemberWater would usually clear up any anal pain I had and not over eating and getting enough fiber. I am not sure if that would help your case though. I am sorry you are going through all of this!!! We all have our trials and tribulations unfortunately. I will keep you in my prayers! I would definitely express all of my concerns and pain to the doctor and see what he says. Keep us updated and I hope you get better my dear [ more ]
JaydogYes it all heals over time. After my takedown I was constantly worried because it seemed like every few days I'd have some new weird feeling or symptoms. Then as soon as I started worrying about it they would go away and something new would start. My advice is give it a few months and don't sweat things to much. It's a huge change to your body and it takes some time. I'm about 6 months past takedown and I feel great. I work out every day and do what I want. It wasn't this way when I was 10... [ more ]
New577Takedown plus 10 days. it’s been tough trying to regulate my body. I got no sleep sat night, diarrhea all night long last night, ate last meal by 500 pm and slept most of the night my question is. The area by the osteomy takedown is always in pain. I swear I can feel the stool and gas passing thru the surgical area at all times. I cannot take bentyl for other reasons. Does this heal over time or do I need another anti-spasmodic and any recommendations ? [ more ]
Morgan HubbardHi! I LOVE my GI doc in Boston; her name is Dr. Vanessa Mitsialis. I also have had really good experiences so far with my surgeon, Dr. Joel Goldberg. Both are at Brigham and Women's in Boston. I recommend a visit with Dr. Goldberg, for sure. [ more ]
PT1092Hi Katie, Dr. Liliana G Bordeianou At MGH is amazing. If your insurance is accepted I would contact her and go for a consult. Best of luck! [ more ]
Katie SThank you so very much. Doing my best to take deep breaths. [ more ]
skn69Jan, I had an Obs/gyn who was full of old-school wisdom. When learning about my pouch and the fact that my stoma bleeds regularly, even a few drops, every time that I intubate, he exclaimed that blood belonged inside and not outside the body...and that constant loss of blood no matter how small the quantity, could lead to anemia...he put me on higher doses of iron after that. We have our special anatomy and special needs (no not that way!) and all have diplomas in medicine when it concerns... [ more ]
jan15Sharon, thanks for your reply, which as always contains great wisdom. I do eat a balanced diet and am clued into what foods to combine or avoid. That said more advice is welcome. Additionally, I have been told that some K pouchers don’t absorb nutrients as well as others. According to a scope there is one ulcer. Will know next week if it’s a scrape, perhaps from the catheter, or a small amount of pouchitis. Personally I don’t think that small of an ulcer could have caused the Iron... [ more ]
skn69At the time that I had my k pouch done (in 1979) I was told that if you can gain weight then you are absorbing enough. In the long-term, I realized that that was not necessarily true. Yes, I absorb most things (especially those darned calories!) but some things need help. I take my B vitamins in sublingual drops or dissolvable tablets (getting a shipment shortly from N.A.) and although I tried the Forvia Iron, I had a horrific allergic reaction to it and had to stop. Now I take iron pills... [ more ]
skn69Thank you Jan, You are absolutely right, my 'special' status or condition as medical abnormally is rather trying. I feel like an idiot when I have to recite my medical history to a new doctor. I will keep up the good fight and go back to my specialist for the 'next step'...yes, I also thought that while they were in there that they should have done a liver biopsy but there was no mention of it in the report... Maybe I should just lay down arms and accept that this thing is part of me...and I... [ more ]
Jan DollarSharon, No news is good news, right? Well, not so much when you are looking for answers. I have to ask. Didn’t they do a liver biopsy, or is that going to be the last resort after this procedure? Ages ago they would do a liver biospy practically on a whim. But, it is not risk free, even with using the fine needle to reduce the risk of hemorrhage. In the end though, sometimes it is the only real way to determine what is causing the inflammation. Of course, even with the biopsy you can wind up... [ more ]
skn69So the test was last Friday and as always I overdid it within hours of getting home...I had no pain and no discomfort so of course the next day I cleaned my house, worked, ate etc...Sat night I felt like a freight train had hit me. Horrific night of pain, gas, discomfort, punching in my guts...you name it...at one point I thought that someone had kicked me in the liver and lungs with Jack-boots. I was exhausted and worn out...it took 2 more days to recover. I should know better. Even when... [ more ]
skn69You are very welcome Tony...good luck and please keep us posted on this new doctor...we are all interested! [ more ]
Jan DollarGood luck with your new surgeon. You may also want to check out our continent ostomy forum, K-Pouch Korner. https://www.j-pouch.org/forum/k-pouch-korner Jan [ more ]
skn69Fredz, I have had a K pouch for 42yrs (a continent ileostomy with a permanent stoma (very tiny)). Around 2008 I started to get peristomal hernias. I had them fixed from outside--in and inside-out. They even moved my stoma twice. In the end, I required a mesh repair but that was because I needed to keep my stoma. Yours will be closed so it is a different story. There will be less strain on the zone (I think...Scott and Jan please feel free to correct me if I am wrong here!). My big mistake... [ more ]
Jan DollarFredz, the info you got from Healthline is correct. If a hernia is present, they can repair it at take-down. But, mainly, only surgery can fix a hernia. There will be a scar, but it will improve over time. While the stoma is in place, obviously you should not strain your abdominals. Like Scott mentioned, discuss all this with your surgeon. You will need to be careful in the post op period after the j-pouch surgery too. There are many athletes with a j-pouch, so no need to stop your focus on... [ more ]
PortiaHi Angieb, I have undergone this myself. I echo what Kmiller said—share these concerns with your medical team. I experienced a compassionate and caring response—they couldn’t have been more wonderful. They’re there to help and glad to provide reassurance. In my case everything went very smoothly—I am sure it will for you, too! Please let us know how it goes. Sending you lots of good wishes. [ more ]
Former MemberYou are welcome, hope things get better dear [ more ]
Brett LThank you @Scott F. I knew about FMT, but i didn't know it coukd be persistent. I hope this does it definitively. Thanks for the heads up. I'll stay vigilant. [ more ]
Scott F@Brett L I’m sorry you have C diff, but I’m very glad you have a diagnosis. Hopefully the Vancomycin will take care of it. C diff can be persistent and recurrent - it forms spores that are extremely durable. Sometimes a single treatment works fine, but it’s helpful to remain alert to the possibility of it coming back. In stubborn cases, if the Vancomycin can’t get the job done, FMT (fecal microbiota transplantation) has turned out to be quite effective. [ more ]
Former MemberI would not try slowing down your poop until you see how things go first. Take it easy. I was on a low residue diet for a while, and I was on low fibrous foods I believe. Drink lots of water and watch your hyrdration! Drink before, during and after every meal. [ more ]
ET_RNThank you so much. The colorectal division is truly trying to form a center for IBD and Cancer expertise in surgery, Interventional radiology and GI specialists. Dr. Kiran, Dr. Shen and Dr. Church all worked together for over a decade at Cleveland clinic and now are happily together again [ more ]
Former MemberThank-you for letting us know dear and taking the time to post it [ more ]
Former MemberYour welcome dear! Let us know if you need anything, were here to help Congratulations on Take down hon [ more ]
Morgan HubbardThank you all for your help here! I'm now a week out from my takedown and I've had some setbacks (debilitating but temporary gas pain, mostly) but I'm trying to eliminate some FODMAP foods in the short term to tamp that down. I installed a bidet pre-takedown and got some calmoseptine, and I'm keeping up the same Metamucil regimen I was on when I had the ostomy. Butt burn seems minimal. I really appreciate all the helpful thoughts on this thread! I've been dreading the process of getting used... [ more ]
Former MemberWow that is crazy! I am sorry to hear that! I see leaks are pretty common in all types of pouches. [ more ]
Tony SpackeMy valve after each repair developed scar tissue causing the mouth of the valve to fish mouth allowing fluid to escape. Very unfortunate. Dr Schiller concluded that replacing the valve with new tissue will solve this from happening again. [ more ]
Scott FI just meant that rushing a bathroom trip (for me) means I’ll probably have to go back and finish up. Not a huge mistake, just an inconvenient time-waster. [ more ]
Sherry24Thanks for the replies! Scott F do you mean a mistake as in extra bathroom trips and lots more gas? I just HATE it!!! [ more ]
AimcGlad all's going well Andreita. I'm with Jan, sometime it's more trouble than it's worth. Aimee [ more ]
Jan DollarLet’s not jump to conclusions here by implying malpractice when we do not know all the circumstances. Not taking sides, but there can be conditions present at the time of the first surgery that we are not privy to, like the condition of the patient. An example is a poor mesenteric reach. Plus, sometimes people assume entering into litigation is like ordering a pizza, fast and simple. But, it can go on for years, drain your bank account, and consume your life. A poor outcome does not mean... [ more ]
Mary ODon't know why not. My gyno does. Her exam of that area is minuscule compared to the pelvic floor physical therapy I have in that area. [ more ]
grandmaof1No my general practitioner let my GI doctor handle everything in that area. So no I don’t get one from my doctor during a female exam. [ more ]
JHendrixHm. I don't remember having an anal exam during a regular pap/pelvic exam but, having said that, I've had a number of 'digital probes' of the anus including a physiotherapist for pelvic floor work. She was given the go ahead by the surgeon. No pouch damage. Just my thinking though.... [ more ]
girlunkyHi JoeJoe, I have a numb area on the skin of my left upper thigh from my first surgery. My friend who is an anesthesiologist said that this happens during long surgeries from pressure. He said I'd "get used" to it. I've never regained any sensation there. [ more ]
Former MemberOh wow, I am so sorry to hear that Joe! Usually the three-step surgery is more safer for men and reduces the risks of nerve damage in the reproductive organs, I am sorry to hear all of that! I hope everything gets better. Let us know how things go in July. Where my takedown scar is, I have less feeling there than before, I guess that is nerve damage? [ more ]
ytcrockpotI’m so thankful I have 2 great doctors, gastro & pcp that are concerned for my health and the expense that it costs me. [ more ]
Jan DollarWithout getting this thread further highjacked from the original question, I just need to point out that all of these variables surrounding invasive procedures and how to control the cost to patients are complex and not a given from one person to another. I have the same complaint about doctors who push brand name medications because they get kickbacks (not permitted at Kaiser) and patients wind up with higher copays, assuming they must have that fancy new drug. Most of us are not lawyers or... [ more ]
Kh1988Thanks for replying! I messaged the doctor on patient portal and he called me and answered all my questions 😊 [ more ]
Kh1988Thanks for replying!! You were right, doctor called me today and said the inflammation that was present was essentially “normal” and didn’t indicate anything was wrong. The pouch looked good. So they have officially decided that my issue is all pelvic floor related. Very tight sphincter too. They want me to do either their biofeedback program or if I can’t do that, then pelvic floor pt close to where I live, plus self dilation once or twice a week. [ more ]
PortiaI did quite a bit of business travel for years after my takedown, often traveling with coworkers and clients. What worked for me was sticking with food I knew I could tolerate (learning the hard way that road trips are not the time to experiment with new foods), eating lightly, avoiding alcohol and desserts when others are indulging, taking Imodium, and being totally shameless about asking for pit stops. Good luck! [ more ]
grandmaof1My cuffitis I do Anucort HC suppository after the BM in the morning and Canasa suppository right before the bed. I completely understand your pain. It hurts so bad that tears run right down your face. The GI doctor gave me lidocaine ointment for the burning anus. Please keep us posted and good luck. And do watch what you eat. And be on the safe side and eat light and mild items. Good Luck. You have my support. [ more ]
Jan DollarJust wondering. What is special about Greek yogurt in the case of cuffitis? I have never heard of this before. I have only heard about yogurt with active live cultures as being beneficial to the gut, and even that is not a strong link. It is a very healthy food though. Jan [ more ]
Former MemberYour welcome dear! Make sure its Greek Yogurt though Definitely still reach out to Gastro though [ more ]
Roni*Lauren of Emerald City: No Alcohol TF: The whole point of making 24 hour fermented yogurt is it takes that long for all the lactose to be used up. Lactose intolerant people can eat it. Andreita: The store bought yogurt does taste different. I'm guessing maybe because it is made with whole milk, so a lot more fat in it. Thinking about going back to making my own again for that reason. I did find the Dannon Whole Milk yogurt I usually use in the next town over from me. I use 1/2 cup of that... [ more ]
igotanewlifeHey! I started off with calmoseptine but for some reason my body had a reaction... I found the combo that really got rid of my butt burn. Metamucil to have more formed bowl movements, bidet to wash everything off and minimize wiping, and vaseline. Good luck! [ more ]
rosevioletCitrus burned on the way out so I took a dose of antacid like Maalox when eating it. Peaches, pears and other fruit didn't bother me at all. [ more ]
Former MemberI heard on here milk helps with spicy foods, so that might help. But honestly, maybe your not meant to eat citrus foods. I know I cannot have raisain bran because it hurts me with gas, some things are just meant to be hon. Try milk and if that does not help, I would let it go. [ more ]
grandmaof1Canasa is Mesalamine in a suppository form. Sorry I didn’t add that above. I’d try that before I tried Biologics. Those can really effect other parts of your body. And the Mesalamine enema isn’t strong enema and really doesn’t work. I truly feel he needs the Canasa. It’s amazing. [ more ]
grandmaof1Has he tried Canasa Suppository? I do hydrocortisone suppository after the morning bms. I’d find out about Canasa. It goes directly to the area and it works all night long. It has been a life saver. And I also fight cuffitis for years. The pain is so unreal. I’m so sorry. [ more ]
Former MemberI was scared the balloon would damage pouch to since it hurt so bad, they blew up that dang balloon so big lol. Good luck on Friday!!! Check in [ more ]
New577I had the the pouchogram about 4 weeks ago. While it was very uncomfortable, I would not call it pain. Just a very full feeling down there while you are turning left side to right side as they are shooting lots of X-rays. the tech took pity on me and held the catheter in place instead of inflating the balloon. I was scared that the balloon would damage the pouch. best part was when the young radiologist popped her head out from behind the booth and stated , ok no strictures or leaks, you’re... [ more ]
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).
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The Crohn's & Colitis Foundation of America, Philadelphia, Delaware Valley chapter, is located at 521 Bustleton Pike, Feasterville, PA, 19053. Tel: 215-396-9100
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