Former MemberYour welcome!! I actually never heard of FAP until I joined this forum. Then I started researching it lol. Remember, there are no stupid questions love [ more ]
DutchieWOW! I had no idea. Thanks Lauren of Emerald City for posting that link. [ more ]
Former MemberNo such thing as a stupid question https://www.youtube.com/watch?v=JQpt3b-jIAw [ more ]
Former MemberDAMN!!! You have not gotten scoped in 20 years?!!?! I totally get it, our surgeries and whole disease story is traumatizing. I am happy you are ready now Good luck hon!!! When are you going in??? Hopefully soon??? [ more ]
Sara MarieMaybe. I'm going to see what the colorectal surgeon recommends when she does my scope AND checks on my butthole. Big step for me. Haven't been scoped since my last colonoscopy in 2004. I was too scared to let anyone near my butt, but now I feel a little less traumatized and so I'm going to go for it. Wish me luck! [ more ]
Former MemberOkay good! You came this far, you mind as well see it through. I am sorry about the Crohns attacking the pouch, that is very common!!! [ more ]
Former MemberYeah, I hear that often about Crohns attacking the pouch. I those people including you had Crohns the entire time and its just reaching the surface now unforuntately. Are you going to keep your pouch??? [ more ]
Len78I don’t have a rectal cuff anymore since transanal mucosectomy done 4/17 via minimally invasive surgery so I don’t have the issue of humorous anymore the pouch is handsewn to the anus now due to fap and a risk of high grade dysplasia /cancer which thankfully came back benign len [ more ]
Scott FIs this doctor a surgeon or a gastroenterologist? [ more ]
PotsCool. Thank you. I will be pushing this when I see the good Dr. in 2 weeks. Thanks for the info. I was on Humira for 5 yrs. and this worked until I developed 998 antibodies that worked against it. I had to switch Drs and now This one wants me to do a reverse on the pouch and I don't want to! It is such a life changing thing to do, and I don't want to do that. [ more ]
Anna625Yeah there is a whole class of biologics that are immunosuppressants that can help. [ more ]
MysticobraI haven't had a gastro Dr in a decade. Mine retired while I started my journey. So I never went to another until recently. Only because I need someone to call refering to complete Blockages. Anyway. I'd get a different gastro Dr. Although what bugged me from the get go on this guy is that he didn't meet me. He had an assistant take down information. So time will tell on him. If I don't like a Dr. And it does not happen often. I will find another. The one I did have understood me completely... [ more ]
JgrantUgh… I’m sorry to hear that. I’ve been in similar situations for 40+ yrs. For me, it revolves around pain control. I can’t take NSAIDS because they make me bleed. I have had my entire cervical, at top 3 thoracic vertebrae fused because I have spinal stenosis top to bottom. I have extreme pain on a regular basis. I finally found a doctor who would prescribe opioids but only after I took Motrin for 2 days and sent him a picture of a blood filled toilet bowl - after that, I went for an... [ more ]
J.T.I can't say I like an ostomy, but I have not felt this good since I was diagnosed with UC at age 23. I have gained weight, and I work out regularly. Best part is I take no medication... well, I do take a monthly B12 injection and multi vitamin. My blood work is always perfect and i'm healthy. [ more ]
JgrantI’m sorry that you’re going through this. I had Botox for a fissure. It did nothing to help. My problem is twofold, though. I had my ileoanal anastomosis at Yale in 1987. I had the usual pouchitis, butt burn, bowel obstruction issues, but my pouch has held up beautifully. My problems, and what presumably led to the fissures, are: I have SIBO (sm intestinal bacterial overgrowth) which creates a LOT of gas. I also have R-CPD (retrograde cricopharyngeal dysfunction) which means basically that... [ more ]
grandmaof1I am having the same issues. And my surgeon suggested a catheter also but if I’m backup then the stool is to hard to go thru. I have been on Miralax and realized something last night. That it puts water into your colon (normal people). Well it’s taking water from me else where and making me very dehydrated. And this always happens right before bed. So I’m not taking Miralax today but I’m going to try Laxative tablets (Bisacodyl). I’m desperate. My surgeon also told me I should always have... [ more ]
Scott FIf you can tolerate inserting a (lubricated!) catheter you might be able to give the anal canal a chance to heal by irrigating the pouch for a few weeks instead of straining on the toilet. Have you tried treating the cuff with mesalamine (e.g. Canasa suppositories)? That would be the usual treatment for cuffitis, though it sounds like you may have a couple of things going on. I’m assuming that you’ve tried warm sitz baths. A biologic might help you. Restarting Remicade is sometimes... [ more ]
aragornOur DR is calling it "cuffitis," and treats with mesalamine suppositories. Even tho not completely cured, far better than the constant pain and hospitals before the j-pouch. Also have to keep strict eating patterns to avoid obstructions further up from scar tissue. No big meals, no insoluble fiber, much much water, very little if any meat and dairy, etc. [ more ]
chili123Ty!! I do think inflammation is a huge issue for me too. [ more ]
CTBarristerVery common to have inflammation in that area and I had it dilated 3 times late 2021 early 2022. It's not a big deal. Probably due to backsplash stool and not "Crohn's Disease" as there is no backsplash valve on the pouch like there is in the colon. Which is why inflammation in this area is very common, especially with older pouches. [ more ]
liza_sThanks for the replies! I reached out to both my GIs to see if I could get started. Hoping I hear back today or else I’ll just go ahead and start the antibiotics. i have a new dietician who has a j pouch! So I’m confident I’ll find the right diet for me. However, I am a private chef ( www.Florabellefood.com ) and I am at the mercy of my clients a lot of times. I can’t always cook all day for them and then make something special for myself. Are there tricks to adding more fiber to your diet? [ more ]
JaypeaI agree with Scott's answers. Start the Cipro and take it for at least 14 days. See what happens. I have a healthy well functioning pouch and cannot tolerate too much fibre whether that be grains, nuts, lettuce, fruit etc. That gives me frequency and often horrific butt burn. I'd suggest going back to a soft diet of well cooked items. For those of us without a colon, fibre often is very nasty and works to increase bm's. Have fun at your sisters wedding. [ more ]
Scott FSome people seem to get substantially better pouch functioning on antibiotics even if the clinical findings aren’t clearly pouchitis. It’s less clear whether that gives a lasting response with a 14-day course (like acute pouchitis generally does), vs. long-term antibiotics. The biopsies will usually show mild inflammation regardless of how well things are going, so I think they can be used to justify whichever course of action is preferred. You might be overdoing the insoluble fiber - not... [ more ]
rosevioletPedroMadruga, am going to get some of this stuff. Am all for "guy improvement." (This was a great typo. Thanks for the good laugh!!) [ more ]
Sara MarieAny more reports from those experimenting with l-glutamine? [ more ]
BarbieGPedroMadruga, Thanks for your advice. I’ll talk to my pharmacist before taking it and my GI. It sounds promising! [ more ]
CVPThank you for taking the time to read my post and share your experience! The unknown is very scary… and I’ve done a lot of research, reflecting, and after multiple discussions with my surgeon, I’ve decided on a permanent ileostomy - surgery at the end of July! Honestly feel such relief that the decision is made. Nervous for the journey ahead but optimistic that it will give me a better future 🩷 [ more ]
CVPThanks for taking the time to read my post and to share your journey. I’ve seen you comment about your k-pouch on other’s posts too and I have previously visited the link you shared! Thank you for educating about the k-pouch 🩷 [ more ]
ktaWhen I was at my wit’s end with my new pouch, an excellent ostomy nurse told me to ‘put my patience hat on.’ For some reason, that calmed me and I was able to deal with the ups and downs of those early times. Also, until I got my bidet, hopping into the shower after every bowel movement was a hassle but a lifesaver. Use a mild soap like Cetaphil. [ more ]
Sara MarieYes, bidet was one of the major things I forgot to mention! So much better when you can wash your butt and pat dry. I got one from Amazon that is cold water only, but I live in TX, so half the year the cold water isn't cold. I like it because it is hand-held and you can aim it and wash from the front, like the way you wipe. Spraying back to front seems a bit unhygienic to me, as a person with a vagina. [ more ]
OldladyThank you i was hoping to find a colon rectal surgeon closer to kansas. I should know the experts are further away. According to my last pouchoscomy my pouch is collapsed. I wish my other drs. had told me with all the trouble i was having is dr. left about 15" of bad colon or pulled my small intestine down to my rectal cuff. Just explains why i have had a nightmare of a situation. [ more ]
BillVI recommend Dr. Sharief Shawki at the Mayo Clinic in Rochester. He is one of the top continent pouch surgeons and received his training at the Cleveland Clinic. [ more ]
tetauihu_robHi Dharma, I think blood thinners and IBD can be quite a challenging combination and you really need a doc that knows their stuff. I’ve had a few challenges over the years both with medication and doctors that didn’t quite appreciate the nuances of IBD. I have also learned that what works now won’t necessarily always work for me, therefore ongoing monitoring and reviewing strategy is key. As an example, I am currently on enoxaparin daily injections to treat another clot in my leg. I seem to... [ more ]
BK 123Hi Dharma, In the midst of a nasty flare which ended in getting a jpouch, I had a DVT form in my right leg. The doctors think this was due to all the inflammation, lack of movement and a slight genetic predisposition. For a few months before and immediately after my first surgery (to remove the colon), I was on Enoxaparin self injections. About a month after surgery I was able to switch to 10mg/day Xarelto tablet as a maintenance dose. I never experienced bleeding from my rectum that could... [ more ]
DharmaI'm currently on Eliquis which doesn't need to be monitored like some of the other blood thinners to make sure the dosing is correct. Maybe I'd have better luck with a different blood thinner though? That seems to be at least worth exploring. [ more ]
JPouch2017Hi @Ciara93 is this your first pregnancy? I had the benefit of being pregnant twice before my j-pouch so I was more accustomed to all the very weird things you feel during pregnancy. It is very possible that cramping you are experiencing is totally normal- half way through your body is reconfiguring in some wild ways to make room! It can also be a warning sign that is totally unrelated to the j-pouch. If you’re already doing all the things (lots of water, rest, checking in with ob to make... [ more ]
Ciara93Hi Lisa, wondering how you got on with this? I’m 22 weeks and the cramping is bad! Especially when baby is very active [ more ]
Former MemberUnravel meaning they took the J-pouch apart and put it back in, but I guess that would not make sense because since it has been altered it would be better to take it out, yeah that makes sense now that I think about it. Oh okay, I thought you had to take a enema or a suppository to clean out the anal canal, but it seems what you have been doing has been working just fine! Especially since you have not had it appear on your underwear or anything, that is excellent! And yeah getting another... [ more ]
MysticobraKenneth. I do hope you get some answers and relief. This is a terrible disease and the things we go through to get at least a decent life is a long road. Richard. [ more ]
Ciara93Thanks so much ♥️ I’m on my second course of flagyl now since start of May. My ob said it’s ok and a better option than being sick with pouchitis while pregnant but I’m just wishing I didn’t have to take them. Had my 20 week scan 2 weeks ago though and Baby is looking and measuring perfect so I’m delighted with that. hoping this is the last bout of pouchitis I’m plagued with while pregnant now. [ more ]
JPouch2017There are definitely antibiotics that are safe during pregnancy! She's 5 now so too far back for me to remember exactly what they prescribed but I did have pouchitis that was treated with antibiotics. She is a rainbow baby so my stress levels were high but I also know the risks are minimal and I trust my OB to not prescribe something that poses a risk. I'm glad you've found some relief. Wishing you both happy healthy pregnancies!! [ more ]
HeatherF21Hi Ciara, so I was given an antibiotic called cefalexin and it worked brilliantly. Cleared it up quickly and had no more bouts during pregnancy. In third trimester I did start going to the toilet a bit more but after giving birth My j pouch went back to normal [ more ]
Former MemberOh shit!!!! I am sorry to hear that!!! You went through a surgery and had covid?!?!!?!! Damn! your a trooper!!!! lol. I am so happy you are doing better and eating food again [ more ]
OmystLauren Yes I will wait now and see how it goes. I am feeling much better now. Found out I have Covid and as I was recovering from the surgery Covid came on hard with no clear line between them. The nausea and non-well feeling was rough . My pouch is starting and I'm eating real food again. Got the virus on the planes flying back from the surgery at Cleveland Clinic, I should have timed the antibody peak of a Covid booster to coincide with my surgery [ more ]
JaypeaAll patients will have a pad placed under them for any procedure done under general anaesthetic. You could also mention this to the nurse who checks you in. Leakage of all types happens every day in the OR. We are quite used to it. If it is under a general you will be NPO from midnight. [ more ]
Len78Thank you scott the urologist knows because I was referred to him for retention concerns and and opinion by my surgical oncologist who did the Tami's mucosectomy on me but I’ll inform him I wear a pad everyday m tell the nurses too so they can extra prepare me i think I’ll have a rigid cystoscopy so this scope is diagnostic as that’s what’s written in portal notes so will be atleast 20 30 minutes thanks for writing me/ responding Len [ more ]
Scott FOh, heck, Len, of course an enema is a bad idea in your current situation. In any case, I don't think a UTI is a big risk in this situation - the urethra will be rather fully occupied, and any leakage will tend to follow gravity away from the urinary tract. Do let the urologist know about your concern, so if any precautions seem necessary they can be taken. Good luck! [ more ]
Former MemberAnal sex is a no go for us. That can permanently damage the pouch and cause permanent incontinence. Please do not risk that, you have been through enough already. [ more ]
Sara MarieScar tissue may affect how the massage feels as well. [ more ]
Deb CI got my j-pouch in 1993. I have always had problems emptying. After many months of waiting for improvement my surgeon did a digital dilation, then another one and finally a 3rd one under sedation. This helped a little. Finally the surgeon oredered a defocogram that still left her with no clue what the problem was. They had me using a tap water enema and a medina catheter to empty. It worked but was horribly inconvenient. Finally the ostomey nurse suggested rectocele could be the problem. [ more ]
Saffron64Hi readann, I realise this is an old post, but wanted to contact you as I also have had ileorectal anastomosis and no pouch. Colectomy in 1990 and as you say there's not many resources for people like us. I still have a lot of problems frequency and pain especially at night 🥴 and have recently been referred back to the GI team. I'm in the UK. I'm trying Cholestyramine at the moment. I also have a pelvic floor prolapse with rectocele which causes incomplete emptying, bloating and pain. Did... [ more ]
readann@Safado thank you. A poop schedule like that would be a dream. I go out 9 times in the morning over three hours and it’s difficult to pass it all. It takes so long. [ more ]
Kushami@Stoma BB , you can find stories of people having poor outcomes from any medical intervention. You can also find stories of good outcomes, and okay outcomes. The way to make an informed decision is to look at the sudies showing outcomes from hundreds or thousands of patients, preferably over a long time span. We do have some of these studies now. And then look at the stats in comparison to your own medical situation, if possible. Then consider your lifestyle, personal preferences and access... [ more ]
Former MemberStoma BB How did your appointment go??? [ more ]
Former MemberYes I was told that we are not ever allowed to lift more than 20 or 25 pounds. However there are a lot of people on here that do know this and do it anyway and there are people on here that need hardcore evidence to make changes. I think it is hard to find hard-core evidence about jpouches because j pouch surgery is not that old, its under 50 years old. That is why I rely on anecdotal stories because I want to have my j pouch be happy and live a good life with it since we start running out... [ more ]
OmystThank you ElizaB It was Dr. Holubar at Cleveland Clinic did the surgery. He was also instrumental in identifying the issue as well. Dr Benjamin Click ( University of Colorado health ) did the scope which Dr. Holubar said was very helpful. And I believe I had a loop illeostomy. Good luck and I hope you get resolution to your issues. [ more ]
ElizaBHi...I'm sorry to hear about your issues and hope that you start feeling better soon. I also have a 30+ year pouch and have had a ton of problems recently. Do you mind telling me who you worked with to identify your issues and who did your ileostomy? I'm also wondering if the ileostomy they gave you was an "end" or a "loop" since it seemed to work well for you. Good luck ...and I hope you're soon on your way to a strong and complete recovery. [ more ]
Former MemberOkay, I am glad you have a good support system! MAke sure to drink lemonade to keep your sugar normal. And yeah I understand what you mean about the ileostomy. It might be better to explore all of your options with the J-pouch or possibly other procedures so you do not have regrets down the road. [ more ]
Former MemberRemicade is under the same drug classifier as Humira??? Okay perfect! I look forward to the update! Never heard of Skyrizi, sounds cool. I heard Xeljanz is pretty good. [ more ]
RB15Yes i will update here after the scope! I tried Humira first and it didn’t work, and i believe Remicade is also a TNF alpha drug, so they said it’s pointless to try. The next obvious one to try if Stelara has stopped working is Skyrizi. But i will see what they say after the scope, it’s possibly still adhesions, so it’s kind of up in the air still. Thanks again [ more ]
Former MemberYeah unfortunately I hear that story all the time about people getting their J-pouch surgery and then Crohns comes later. Its unfortunate but very common. I had a Prometheus blood test done before any major surgery- that test tells you if you have Crohns, Ulcerative Colitis, or Unknown- mine came back Ulcerative Colitis. I am not sure how accurate that test is though. I hope the Crohns will not affect your pouch. So it looks like maybe the Stelara is not working. What do you think about... [ more ]
emmeHello 'Hamm' I wish to advise that state-of-the-art IBD treatment & related supports and resources, including a team of excellent surgeons, can be accessed at the Zane Cohen Centre for Digestive Diseases at Mount Sinai Hospital, 600 University Avenue, in Toronto, Ontario. Here is the Zane Cohen Centre for Digestive Diseases website link: https://www.zanecohencentre.com/ With best wishes for your health. Emme [ more ]
OmystYes I think it is residual swelling and I will not push and will stay hydrated. Thanks for the response [ more ]
Scott FCan you tell if your pouch is actually full when you try to go to the bathroom? You could have some swelling around the takedown area, leading to a partial blockage. The bloating can make it feel like the pouch needs to be emptied, but there’s not much there. It will be best if you can avoid straining to try to poop. Hopefully this will clear itself up soon. In the meantime it’s critical that you stay hydrated. [ more ]
gratefulI take Pure magnesium glycinate (120 mg) also at night after dinner with no bad effects. [ more ]
rosevioletPeggy Schirmer, a German with extensive education in healthy living, has lots of videos on various topics, including a couple video explanations of what to look for/what to avoid in magnesium supplements. They aren't hype and she isn't selling. They can be viewed on YouTube/GutFeelings/PeggySchirmer. I've started watching them when I have time. Her explanations are clear and make sense. She says that magnesium glycinate is gentle on the gut and is good for the entire body. Mag. threonate,... [ more ]
LAT in PAThings were already starting to slow down a little when the switch to Stelara was made. I had an abscess that was cleaned out. So I’m sure some of it was the healing of the abscess. I’m not sure how much the change to Stelara helped. Regardless it has been 9 months of Stelara. Symptoms are still present but mild. The problem is definitely weird. Just not sure the benefits outweigh the risks as you’ve stated. [ more ]
Scott FIf I thought the improved situation were due to effective treatment (with Stelara) then I’d strongly consider waiting until I had evidence that the treatment wasn’t working. Is the timing of the improvement consistent with initiation or change of the biologic medication? [ more ]
LAT in PAYou are correct. I was more eager to fix things when it was abscessing often and I had to wear a pad all the time. Now that things have calmed down, I am not sure I want to go through with a complete re-do. I guess the question is what am I risking if I hold off? Risk of abscess I assume. Anything else I am missing? [ more ]
Former MemberI honestly would not recommend Timed release or extended release medications. That is my personal opinion. I would explain my situation to the doctor very thoroughly but some medications only have that option unfortunately. [ more ]
Scott FIf your transit time is quick then these will only work if you can slow it down. Gentle use of bowel slowers, like Imodium or Lomotil, might help. I get fine results with pantoprazole, which is extended release, but plenty of folks here report poor results. [ more ]
CTBarristerJust an update: my cardiologist, alarmed that my sodium level has gone below 130, has ordered me to stop taking losartan and has doubled my dosage of carvedilol from 12.5 mg to 25 mg. I guess he felt the losartan at 50 mg was a bigger culprit in suppressing the sodium then carvedilol, the beta blocker. I was also ordered to keep taking my blood pressures and get another blood test end of June. Hoping to get sodium level up and over 135 by end of June. In the interim, I am keeping my sodium... [ more ]
PouchomarxJust keep eye on ingredients as i was using Ultima replenishments and was going to bathroom alot more and discovered the first ingredient was Magnesium Citrate which is a laxative.. [ more ]
SteveGThat's good to hear. My labs are done every 6 to 8 weeks because of the ongoing biologics treatment. [ more ]
Former MemberI understand. If things do not work out please be open to traveling- the Jpouch is around 40 years old so sometimes you may have to travel for care. Just keep that thought in mind, that it may be a possibility. [ more ]
Sara MarieI got a cereal called "Mesa Sunrise" by "Nature's Path" that, when I ate it in the evening, made it so I slept through the night without having to get up and poop. I have tried to have psyllium before bed and it hasn't worked like that so far. I'm going to keep experimenting. The 3 nights in a row I had the cereal and slept through the night, I was really tired so it could have just been that. Further testing is needed. Also, the Mesa Sunrise made for good poops the next morning. [ more ]
Chook2Kiwi fruit with diced apple and banana in a blender with weetbix is like a enema.big bm but feel great after. [ more ]
rosevioletNo, never consume any sugar-free food. Soda of any kind is particularly bad for bone health. [ more ]
Former MemberDo you ever drink sugar free soda??? If so, does it bother you??? [ more ]
rosevioletThe artificial sugars in OTC products give me the trots. I first noticed this when taking cough syrup. I had a vague memory of reading that ingesting sugar substitutes isn't wise and another article recently appeared about this. Anyway, stopped taking the cough syrup and bought another that had some form of real sugar and trots disappeared. [ more ]
lysanne21Thanks everyone for your input. I'm excited to meet with Dr. Kennedy next week! The time has come to get answers and mentally get ready for what she will say. I will make up a list of questions for her and we'll see what my future looks like... [ more ]
heyitslesMy surgery was done by Dr. Marcus Burnstein at St. Michael's in Toronto. He and his team are wonderful and very dedicated. [ more ]
Former MemberHaving oatmeal and yogurt will help. Oatmeal has prebiotics and yogurt has probiotics. Prebiotics makes probiotics work stronger. So taking those two together will help [ more ]
George ShaikhHello. I have pouchitis and can't handle the antibiotics for it. I find psyllium husk (or metamucil) helps, similar to person that wrote above. I am taking it twice a day now. Another thing you might try are probiotics. They constipate me too much now but did not 10 yrs ago. Bananas are smoother on me than regular fruit. I often just take an ensure or boost to replace a meal. Not fun or filling so I take that a few times a week. I wish you all the best. [ more ]
Former MemberI would say its normal, I had the same issue as well. I did take anti diarrhea pills but after a while they started to clog me up unfortunately. So I wore diapers at night for a long time. I would say it takes a full year to get use to everything, that has been my experience. [ more ]
athenaAccidents, or leakage? I ask because pre-pouch, anything coming out unexpectedly would be called an accident. Post-pouch, leakage is normal. What’s the difference? Liquid only, vs solids. If you have leakage of liquid at night, that’s totally normal after j-pouch and really common, unfortunately. Some people sleep on bed liners—I bought the washable hospital kind—and some wear incontinence pads (just shift more posteriorly than intended), and some stuff a bit of toilet paper or gauze between... [ more ]
EllybellySara Marie, sounds like I have the same thing as you. It's external, flesh color, gets itchy too. Comes for a few days and disappears. Returns when pouch is really active and can also ache then. I am waiting to see G.I. for inspection. It has me worried as well. [ more ]
Sara MarieSo y’all, I was looking at the thing that was worrying me squatting above a mirror and then comparing to internet pics and I think the large thing is a skin tag not a hemorrhoid. I think those are all internal but this external thing isn’t that. It seems to start right at the line between inside and not inside the anus. It may have a fissure at its source. I will get the doc to look, but I have read that skin tags can be more easily removed. It seems to grow and shrink, too, like a... [ 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.
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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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