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J-Pouch ForumsHelp! Need advice now!
Inguinal Hernia
PSJPSJ
Former Member Thank-you so much for the update!!! Sorry Covid ruined everything two-fold!!! That stinks that you had to go through that. Do you still want to call daily for cancellations or do you not want to chance it at this point??? [ more ]
PSJ I had my surgery moved up to 7/19 and then got Covid so I had to postpone it. I then lost my other date on 8/9 and now have to wait until 8/27. If it can go wrong it will with me. You get used to it after a while I guess. [ more ]
Former Member Sorry about your hernia! I am glad they are going to fix everything. Let me know how it goes!! I will keep you in my prayers. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Small bowel obstruction help
CG copper girl
Former Member Damn! Thank-you for sharing! And sorry that happened to you. That does sound like hell. Were you drinking a lot of water that day before the obstruction happened and during the meal??? And did you keep eating even after being full??? [ more ]
TCM Pete, I know the routine but thank you for the laughs. The obstructions are anything BUT funny but we have to maintain our sense of humor...while ditching any shred of modesty. You nailed it! [ more ]
PSJ I had one obstruction a couple of years ago and it was hell. I put it off thinking I was just having a few bad days in a row. This was Labor Day weekend and I was eating all sorts of crap. The last thing I ate was mac and cheese with about 40 different cheeses in there (seemed like it anyway) and I swear that is what finished me off. I made it through Monday and Tuesday morning I was on my living room floor and a huge amount of pain. I went to the ER and they gave me an NG tube which fell... [ more ]
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J-Pouch ForumsHelp! Need advice now!
2mm
chili123chili123
AMB Congrats on the good report @CTBarrister ! [ more ]
chili123 That's awesome. Congratulations! Glad to hear that and thanks for the update! [ more ]
CTBarrister Had my pouchoscopy yesterday. I copied and pasted the relevant part of the report as follows: "Findings: There was an ileal pouch The inlet loop was strictured but a pediscope easily traversed it. This was biopsied with a cold forceps for histology. The pouch itself was normal there was minimal cuffitis bx Impression: - Ileal pouch with stenosis seen. Biopsied. Recommendation: - Return to GI office in 2 years." Obviously, Remicade continues to be working for the most part. This is the first... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Frequent urinary tract infections and a jpouche of ten years
LouisaLouisa
Former Member I love that you work with kids, I use to see a pediatric gastro in my childhood days when I was first diagnosed with Ulcerative Colitis. Do you see a lot of IBD kids in the preoperative area??? And your able to work pretty well there with your pouch??? You are soo lucky you can use just Tp, I wish I was that lucky lol. How do you handle your butt burn??? Just hygeine alone??? [ more ]
Jaypea I spent the last year flying around the world as international cabin crew. I returned to nursing and work in a pediatric preoperative area. I do not take wipes as they are horrible for the environment and I cannot use calmoseptine as it burns like fire. TP and good hygiene are my go to (oh and always have antibiotics ready to use if necessary). [ more ]
Kushami ❤️
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J-Pouch ForumsHelp! Need advice now!
The famous butt burn
KD Kristen Donaldson
Former Member You both have J-pouches?! Twinsies!!! How is your daughter doing now??? [ more ]
CTBarrister If you guys want cheap and natural, how about the Costco Kirkland Brand Psyllium Fiber Capsules? The only ingredients are Psyllium Husk and Gelatin, the latter of which is presumably used in the capsule coating. 720 capsules for $28. [ more ]
Mysticobra Infamous! Lol. 🔥🔥🔥 [ more ]
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J-Pouch ForumsHelp! Need advice now!
Gastroparesis?
H Hoping
Peti Hello I have a j pouch for 21 years and last year diagnosed with gastroparisis ( while I was dealing with long covid ) I had the empty test , showed severe delayed emptying. I suffered for 6 months , vomiting , pain , gerd, loss of weight . Then symptoms disappeared. I started living a normal life again . recently I contacted a bad respiratory illness, may have been covid , ( test neg) but it was 3 weeks , coughing , runny nose …. then the gastroparesis reappeared. vomiting , pain , went to... [ more ]
AllyKat Yes and it’s very disturbing [ more ]
ElizaB ❤️
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J-Pouch ForumsHelp! Need advice now!
Have you had Gallbladder removed with J Pouch???
LF lorraine from london
lorraine from london Dear Dutchie, Thank you so much for reassuring message it means a lot. I hope YOU are taking it easy, and not doing as much. Later will be greater!!! Best regards for speedy recovery.. lorraine [ more ]
Dutchie Hello Lorraine, Not sure if you had your surgery yet. Best wishes if not. I had my gall bladder removed around 5-6 weeks ago laparoscopically because of a fast growing polyp. As Aimc said, BE CAREFUL about lifting and movement. I really wish I paid more attention to instructions, for some reason I thought I would recover faster. I went to my aquafit classes too soon and the larger incision opened up a bit due to the vigorous exercise. I thought I would love to lay on the couch and watch... [ more ]
lorraine from london Hi Betsy, Just saw message and thank you for replying it is appreciated. I hope you are in much better health and comfort now. All the best, kind regards, lorraine Howell. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Prolapse JPouch
J Jayem
Former Member I do not recommend not going to a doctor for years. We should be getting out pouch checked every year or every 3 years if your not having any problems. I confirmed this with many doctors. [ more ]
Jayem Sorry I did go to my doctor [ more ]
Jayem Thanks guy, I didn’t go to my family doctor and ask for a referral to my old GI , I haven’t had anyone following me for a few years now. It happened that morning (i was able to just push it back in) then hasn’t happened again since , I’ve been very careful not to strain at all. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Obstruction needing emergency laparotomy
LinzalishaLinzalisha
Former Member Okay 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 ]
quizkid99 I will keep the pouch for as long as I can. [ more ]
Former Member Yeah, 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 ]
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J-Pouch ForumsHelp! Need advice now!
Botox After Failed Manometry?
J JacobW
Jgrant I’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 ]
grandmaof1 I 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 F If 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 ]
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J-Pouch ForumsHelp! Need advice now!
Long Post - Revision vs Perm Ileostomy
CVPCVP
Spencer ❤️
CVP Thank 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 ]
CVP Thanks 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 ]
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J-Pouch ForumsHelp! Need advice now!
RV Fistula and Surgery Debate
LI LAT in PA
LAT in PA Things 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 F If 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 PA You 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 ]
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J-Pouch ForumsHelp! Need advice now!
crohns Disease
L Lucho
Former Member I 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 ]
Lucho Looking in Portland. [ more ]
Former Member Are you willing to travel or do you prefer to stay in Oregon for Doctors??? Some people on here travel out of state [ more ]
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J-Pouch ForumsHelp! Need advice now!
Dieting with Chronic Pouchitis
SeirlaSeirla
Former Member Having 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 Shaikh Hello. 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 ]
lclassen ❤️
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J-Pouch ForumsHelp! Need advice now!
totally unpredictable
N NurseKaren
NurseKaren Thanks Scott!I will take your suggestions. [ more ]
Scott F I’ve been on Flagyl continuously for about 8 years. I added it to Cipro when Cipro alone stopped working. I took the time to find the lowest effective dose, to minimize the risk of side effects. The pouchitis guidelines are very clear that for some J-pouchers continuous antibiotics are recommended. You might want to find a GI who is familiar with the guidelines, perhaps an IBD specialist. For J-pouchers who require continuous antibiotics it can be advantageous to rotate antibiotics,... [ more ]
Kushami ❤️
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J-Pouch ForumsHelp! Need advice now!
Horrible butt burn and gas is killing me!
P pzzzzs
ELH Ilex Skin Protectant Paste is the absolute best product for butt burn. It always took care of my butt burn almost overnight. I used it for years, but sadly, the company sold Ilex to UK. Now it is Sold Out everywhere. I have done extensive searches over the internet, but no luck. I think there might be some litigation issues involved. For a while it was sold in UK by prescription only. They should start manufacturing Ilex again. It will be a gold mine for them. Personally, I'm desperate to... [ more ]
pammieskrh I use psyllium fiber three times a day, one tablespoon or more and has completely eliminated my butt burn. Good luck. [ more ]
JacobW How are you doing today? Dealing with symptoms myself [ more ]
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J-Pouch ForumsHelp! Need advice now!
Over active j-pouch
AF Andrew Fletcher
Kushami @Andrew Fletcher , are you in the UK? If so, the nurses at St Mark’s can help. Scroll down to the heading that says “Pouch Service”. https://www.stmarkshospital.nh...ices-a-z/stoma-care/ Have you tried smooth Metamucil (fine psyllium husk powder), a teaspoon mixed with minimal water right before main meals or fibrous snacks? It can have a very nice cushioning effect and cut down the number of bowel movements (BMs). [ more ]
Kushami ❤️
Scott F That’s a lot of loperamide and codeine. Have you tried delaying bathroom trips? Over time by gradually, gently increasing the interval between trips you can generally increase your pouch capacity. This is sometimes called “stretching the pouch.” Psyllium fiber can add bulk to the stool, which might enable you to gradually reduce the loperamide and codeine. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pelvic Floor overtensed
N NikiasVW
JacobW Does anyone have experience with Botox to help relieve symptoms? Just confirmed through manometry I have similar pelvic floor issues. Biofeedback has a long waitlist, and I'm looking for some relief until then. Currently working with Dr. Kiran and Dr. Shen at Columbia Presbyterian in NYC and am scheduled for a 50% Botox injection next week. Any help is appreciated, thank you. [ more ]
JacobW Love to hear that! [ more ]
NikiasVW https://www.j-pouch.org/topic/...8#724729909443105758 Hi, I'm doing so much better nowadays, out and about living life! Still trying to figure out what foods work or don't for me. But back at work and sports. Most importantly I can finally show up like I want for my litle daughter ❤️ [ more ]
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J-Pouch ForumsHelp! Need advice now!
Increased urgency & frequency
V VB_93
JacobW Hi VB, This sounds so similar to me right now! Curious how you're doing now and where the stricture was? Thanks [ more ]
Terradon Thanks for letting us know! Always good to hear how it turns out. [ more ]
VB_93 Thanks all for your replies on this matter. Just an update - I have since had a scope done and it showed a very significant stricture that was so tight they couldn't actually pass the scope through! Hence the feeling of not being to completely empty and frequent visits to the bathroom. I am awaiting a dilation procedure for this and my GI seems to think this will resolve the issues I am having. I hope this helps anyone else who may be in the same boat and experiencing the same symptoms. Kind... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-pouch surgery and Long Covid
GS George Shaikh
George Shaikh I’ve tried physio cHiro and massage for a year. Not much help. Doctor thinks it’s inflammation somewhere caused by covid. I limit my Advil. And Tylenol no help. So for me it’s pointing towards inflammation. However, two of my doctors say they don’t know much about Covid in a caring way. That’s better than someone giving ‘Inflated’ info. . I have not ruled out acupuncture but with the frequent bowel movements I and long covid, I don’t have much time left in the day. I am grateful for the good... [ more ]
Sara Marie I'm so sorry that is happening! As you probably already know, Advil (NSAIDs in general) can cause adverse reactions in some people's pouches, which could be the source of the low back pain. I have had it from pouch inflammation before. I have also noticed that pain killers (even acetaminophen) make my pouch mad with repeated use. Have you been to acupuncture? A knowledgeable Acupunturist can help balance the immune system to clear up stuff like long covid. They might have dietary... [ more ]
George Shaikh After the Advil starts to wear off I get nasal congestion, headache, fatigue and what’s weird is lower back pain. I’ve never had a back pain issue. The fatigue can even come after a nap. These symptoms are daily. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Prep! Do I really have to do all of it?
T tulsamom
Jaypea It is the assistant you are speaking with and not the surgeon. They do not generally consider cases individually they go by what they are told by the surgeon. They are unfortunately too used to dealing with patients who own all of their own internal landscape and not prepping properly because they "don't like the taste" or "it makes me poop all day". If you are certain you are clear and continue to be so then do what works for you. The assistants have probably been yelled at by the surgeon a... [ more ]
tulsamom Thank you guys for answering. I do feel like this doctor is asking for overkill. And not taking into consideration my system that goes down so quickly. I called the office and his assistance said I had to do all of it. But I’m not going to. It’s not gonna get any cleaner by taking another laxative and dehydrating my body anymore. There’s nothing more to come out. I’m not a meat eater, so nothing’s gonna take a long time. I have to admit I was really surprised at how rude the assistant was,... [ more ]
New577 I have a pouchoscopy coming up next Thursday. first time he suggested the magnesium citrate. I said no way, it will put me into full IPS. so I do half of a Miralax prep: 119 Grams with 32oz of gaterade. This does the job. don’t be afraid to speak up. Doctors are used to dealing with the masses. We are all individuals and if you know what works for you, tell the doctor that’s your preference. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Metamucil Use with J Pouch
F Frustrated
Sara Marie In my experience, psyllium works right away, not over time. If you're not seeing any difference, you may need to take a larger amount. I take a heaping teaspoon with water before my breakfast (oats) and that is sufficient, however, before meals that move quickly through (veggies, meat, etc.), I need 2 t with water before eating. You may need even more because of the missing gallbladder? And I might require less because I'm kinda on the small side (5'2", 110lb). [ more ]
Nancita 👏🏽 What a wealth of info here! Thanks all! I’ve had my j pouch for a few years after surviving colorectal cancer, then lost my gallbladder. Loose stools are bad enough but that combined with increased butt burn from all that bIke releasing w/o the gallbladder is very uncomfortable . Thanks to this topic ( and my gastro doc) I started taking Metamucil fiber a few days ago and hope it will help mitigate all the bile acids and slow down my active j pouch. So far I don’t notice much... [ more ]
Frustrated ❤️
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J-Pouch ForumsHelp! Need advice now!
Abdominal Pain & Other issues
M mzhyde
New577 Hello, oh how I do relate to your situation! I’ve had my pouch for three years and my whole life revolves around BMs. I take three immodium/day, breakfast, dinner and bedtime. I take levsin when I have IPS. I watch what I eat, how much I eat and when I eat (rarely after 6pm). I stick to two meals per day, and my food no go list is extensive. I need to monitor medications (no extended release meds for me). While I have not had pouchitis, my GI and I monitor for cuffitis, SIBO and IPS. its... [ more ]
Mrs P Hi there, Im so sorry you’re having so many problems. Do you like your Dr? Important to have a good GI doc that you like and can rely on. I don’t have a lot of advice. I’m having some issues of my own. I can tell you that I take VSL #3 ( probiotic) twice a day. Expensive but has made a big difference for me. I also eat a pack of Metamucil wafers everyday. Sometimes I drink the powder. That has helped me with firming up my stool. I read somewhere that an empty bowel will cause gas. Not sure... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Difficulty evacuating/constipation?
L LIGuy11
Pals Try the water eneama it will help for now [ more ]
LIGuy11 No stomach pain here. Just difficulty emptying. I strain a lot but only a little bit of stool comes out at a time. Here and there a decent amount will come out, but something is definitely off. I have a prescription for Linzess which usually helps me go, but I don't want to have to take it regularly. I will ask about Rifaxin, thanks! [ more ]
Pals I have not had that issue. I can tell you if you are backed up and your stomach is just in agony. Go to Walgreens get an enema empty it out and put water in there. That will help tremendously To relieve yourself. The antibiotics Would defiantly back you up as well. Maybe as Doc about Rifaxin? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Dr Bo Schen good and bad experiences
AllyKatAllyKat
marz Dr Shen is the only Dr I will go to for my pouch—here’s why. I had my k-pouch for 8 years before I started having severe pain 2 hours after eating every meal . I went to Laney clinic, palms hospital in st.petersburg fl ( where I had surgery, but they are no longer doing this surgery) and no one could find the problem. (Many cat scans and tests ) Finally got the appt with Dr Shen at Cleveland clinic and he found the problem immediately after a pouchoscopy. It was a fecalith—which is impacted... [ more ]
JBS I have had a very positive experience with Dr. Shen. I have had my pouch since 1989, and was issue-free for 11 years, at which point pouchitis kicked in. My doctors put me on Cipro to control the pouchitis, and I was never able to get off of it for more than a month at a time. I was a patient at The Cleveland Clinic and I went to see my original surgeon (Lavery) in 2003 as a pre-op to have my pouch reversed - I couldn’t stand the side effects of Cipro any more. Dr. Lavery had me meet with... [ more ]
AMB I've got a "floppy pouch" issue - the lining gets droopy causing various problems. Dr. Shen tightens the pouch in these areas during pouchoscopy with tiny bands - the same ones that are used to treat bleeds in the esophagus. You can't feel them and they fall off after they do their job. I think of it as a pouch facelift. It has improved my pouch function each time. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Medications for Crohn's disease -Stelera
SC Sheila Cohen
Sheila Cohen Darren thanks so much for your experience with Stelera. At my age of 76 soon to be 77 I really want to safe time and not experiment with other drugs. I have acute inflammation and have put off taking any drugs with my j-pouch since 1998. This year will be my first exploration with a biologic. I had 7 years of ulcerative colitis with meds before the surgeries . Thank you for sharing , it means so much.May you keep healthy and enrich yourself daily. I do art work to satisfy my needs for... [ more ]
DarrenKS I took Stelara for several years for my Chrons, this after a severe adverse reaction to Remicade. It worked great for a couple years, then dosing frequency had to be increased to double (monthly 90 mg) when efficacy diminished. Eventually just stopped taking when the drug lost any effectiveness. In consult with my GI, the risk of continued usage outweighed the nominal gains I got from continued treatment. For now, I am back on Cipro to control symptoms. Will probably begin Skirizi in the... [ more ]
Sheila Cohen Thank you Bubbapup for your helpful response. I appreciate your feedback on arthritis as well. This is the only medication I have to be experiencing and hope it works. Wishing you continued good health, thanks so much for your reply Sheila [ more ]
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J-Pouch ForumsHelp! Need advice now!
Feeling tired of the symptoms
chili123chili123
chili123 I absolutely agree with everything you said.....100%. I definitely need a relationship with a gastro doctor, for sure. I will work on that tomorrow, for sure. And we are so lucky to have this support group to help us......so greatful to have you and others respond. Helps more than I can say ❤️ [ more ]
New577 Excellent advice @scottf. i think surgeons are appropriate for post surgical care (several months at most) then my GI from the crohns and colitis center at my university hospital took over. Since they have a large jpouch cohort in addition to whatever other GI stuff they handle I am receiving excellent care the last three years post surgery. I see them 3x year in the clinic/telehealth plus pouchoscopy. They are literally a email message away for help when something goes wrong with my pouch. [ more ]
Scott F Surgeons vary a lot in terms of how much medical pouch care they provide - some are great, some are worthless, and many are in between. Most of the positive stories of surgeons providing care seem to involve patients they actually operated on. A surgeon is the doctor you have right now, so maybe that’s who to call first. Ask him if he’d prefer you see a gastroenterologist, and (if so) who he’d recommend. In most cases you’d be better off with a pouch-knowledgeable gastroenterologist. These... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anal fistula, seton, and pain: what's "normal"?
SC Silo City
lindaslankard I know exactly what you’re talking about. It is a terrible way to live. I’ve tried every cream, ointment, etc I’ve gone to Cleveland Clinic, Vanderbilt—you name it—I’ve tried it. I wish someone would find an answer because you have no quality of life. It’s a tear in the wall if the rectum, fissure or fistula. Help us please!!! [ more ]
Momof2 I’ve had 2 setons in for 8 months. I’m in constant pain especially after using the bathroom. The pain escalates more and more after each bm. The pain is like someone put a hot poker in my ass. Any thoughts would be SO appreciated. [ more ]
Living ❤️
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J-Pouch ForumsHelp! Need advice now!
Loop ileostomy constantly leaking. Tips?
M Moirathestoma
Moirathestoma Thank you both so much!! I will try Imodium and returning to my old supplies. [ more ]
Kangaroo I had the same problem. My issue was that my stoma was overactive and producing more than twice the maximum amount per day. It was impossible for my skin to heal or even attach a bag successfully for more than a day. I solved the issue with Imodium.. That slowed down the output, so I could properly attach the bag and my skin got a lot better. I know some doctors can be wary of taking Imodium with an ileostomy, so you may want to check with your doctor before trying it. If you have an... [ more ]
shayulajiao Hi Moirathestoma, First of first, you should contact an ostomy nurse and let them look at it, they may prescribe some ointments to you. And they may ask you replace the barrier every day until symptoms go away. I had an similar situation after second surgery, and I figured out I was allergic to the convex barrier at the end. You should try your old regular barrier, and a barrier ring. The barrier ring should prevent leakage. My symptoms went away in 3 days, after using old products and... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Surgery 2 of 3 - Loop Ileostomy
Danno87Danno87
Frank R Regarding urinating, after my 2nd surgery, for 3 weeks I only peed when I emptied the bag sitting on the toilet. It eventually got better where I could pee standing up. Surgeon said it was not unusual since the had to "move" organs around to created the J-pouch. [ more ]
shayulajiao Yes, I had the same issue after surgery 2 of 3. Output got looser because now ostomy is diverted to two parts. There is a downstream(your new j pouch) not in use, so you have shorter intestine absorbing water. You will have an enema exam before your last surgery. And you will see it is a fairly long path from your stoma to your j pouch. I think you should ask your doctor if you are concerned about dehydration. Leakage only happened first couple weeks on me. I placed a pad on my bed. I must... [ more ]
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J-Pouch ForumsHelp! Need advice now!
a temp loop ileostomy surgery looming at same time of gastrectomy. fap patient with low and high grade dyspasia stomach polyps at the tip and high grade dyplastic tubular villous polyps with high grade dysplasia at the tip. surgery will happen/on horizon.
Len78Len78
AMB So sorry you have to face all of this. It sounds as though you're in good hands with the surgeon. The surgical approach back when you had the procedure may have been chosen for better function, because having the mucosectomy can mean more leaking. If you've not yet used the site's search function, search "advancement" - there are quite a few posts from people who've had mucosectomy and advancement procedures. Same for "gastrectomy." Maybe you'll identify members who will share their experiences. [ more ]
Hazel Wow...I didn’t understand half of that! It sounds serious...the best of luck to you and I would like to hear how it all went when you are on the other side. Take care. [ more ]
Len78 Scott 100 percent agree [ more ]
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J-Pouch ForumsHelp! Need advice now!
Adhesions
S sudie
Sara Marie Acupuncture and moxabustion might help. It would take time. [ more ]
Jaypea Unfortunately scar tissue is tough and fibrous. Massage to break up adhesions would be extremely painful and potentially cause damage to the bowel itself if the practitioner was able to massage past the muscle wall to get to the adhesions themselves. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Prostate MRI ?
Jeff807Jeff807
Pouchomarx yeah, 18 months ago my first PSA was 1.97. I had another one done a few weeks ago and its now 2.78 and considered elevated. Urologist wants me to get another lab 2 weeks from now and if it has gone up again he talked about getting an MRI to see if anything looks suspicious. He knows about the jpouch and cant do anything "in the garage". lol. Said if its rising and MRI is suspicious he will send me to Dr Kaouck within my Cleveland Clinic network and if i need a biopsy they could do one... [ more ]
New577 Jeff, you are much more braver than me. i will let no one up up there besides my surgeon and GI doctor. if i ever need a prostate mri they are going to have to perform it without the rectal coil. NFW, am i ever taking a chance like that! [ more ]
Jeff807 Didn’t realize just an enlarged prostate will cause PSA numbers to rise, even with no cancer present, very interesting 🤨. Found out this MRI they’re doing on me is just with & without contrast, I was a little worried about them using a balloon covered probe and going far enough into my garage to damage my jpouch. I’ll never forget my surgeon telling me “nobody goes in your garage but me” lol, but it’s been 7 years and I’ve relocated and now I make sure anyone doing any work in the... [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Possible blood? I need advice
L lassemarco
Rico Hello Marco. How was your appointment at surgeon? Did the bleeding stop? Or there was any other cause? Im in very similar situation right now. 3 weeks after and three weeks before my appointment at hospital. [ more ]
lassemarco Thanks once again for your reply. It is really nice to talk to someone with similar experience. And sorry for my late reply. I'm from Denmark, so I also think there is quite a time difference between us. I see red every once in a while now, but definitely not every time. Thank you for your words, they are motivational for me. With my ileostomy I went to the bathroom 2-3 times a day. Even though I'm glad to hear that my current situation is good for a pouch so young, I don't think any of this... [ more ]
Winterberry Wow, 4 to 6 times is really good for a pouch so young! You are only a month old. In the same timeline, I was going 12 to 15 times in a 24 hour period. It was pouchitis and it was solved with a 14 days' dose of Cipro. Pouchitis usually includes extreme frequency and urgency, and leakage, sometimes constant. See if red shows up again after having non-red food and drinks. It could also be slight irritation of the soft tissue in the rectal / pouch area that is now holding and expelling acidic... [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
inflammation
chili123chili123
Frank R I agree with chili123. Call your doctor. My ileostomy closure and reversal was only 11 months and I have had 3 bouts of pouchitis. They prescribed Flagyl and Cipro without seeing me based on my symptoms of going to bathroom greater than 18 times daily, sense of urgency like you, inflamation of butt due to constant diarrhea. [ more ]
chili123 I may try that. I've never had anything to this degree in regard to it not going away. I'm grateful it's not a blockage bc that seems to be what I normally deal with. I mean my butt is so incredibly sore....can even sit without being uncomfortable. [ more ]
Scott F It could easily be pouchitis, though there are other possibilities. Have you tried calling your doctor’s office and telling them you’re in acute distress? At least you might be put on top of the cancellation list. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Botox?
B Brian
Scott F Botox is used to treat stubborn anal fissures by forcing the anal sphincter to relax and stay relaxed. I don’t know if I’d treat ulceration that way, though, without at least a theory about the cause. Maybe see if the GI thinks cuffitis is a possibility (and treat that, if it is)? [ more ]
Pals Have never heard of Botox. Please keep us posted how it works. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Pain
N NurseKaren
NurseKaren Thanks Scott, Interestingly, Lomotil has become hard to find. Stool consistency varies and doesn't seem dependent on what I eat. I have come to the same conclusions as you so will try to pay attention and not let it get worse at this point. It seems a little better today. And I have tried metamucil in the past but it makes me nervous. I have so many health issues, I hate for my pouch to give out at this point! Thanks again [ more ]
Scott F If I’m reading this correctly the degree of pain is pretty closely associated with stool consistency, suggesting (perhaps) that straining may be what’s triggering the pain. Something like an internal hemorrhoid might behave that way, or (less likely) a developing prolapse could do that. Under the circumstances it might be worth backing off the bowel slowers, though you really don’t use them much. Do you take fiber, like Metamucil? Fiber could help manage stool consistency, but I’d start with... [ more ]
NurseKaren Hi Scott, Thanks for the questions. It's been a week today. I've been on flagyl since last Thursday. It's a lot better, but yes, the consistency had changed from almost watery stools all the time to a hard to pass consistency. Not hard by a normal persons stool but harder for me. It starts when I notice that I have to 'go', pain during the movement then it hurts for a few minutes after, like something is still there, trying to push out. It goes away for a couple of hours and then the cycle... [ more ]
See all 4 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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