J-Pouch ForumsHelp! Need advice now!
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsHelp! Need advice now!
Bright red blood is very fresh, so the hemorrhoids are the most likely source. Watery diarrhea and pain after eating can be cause by a bunch of things. Obviously you need to get a GI to help you sort this out. Hopefully it will be someone you can trust in spite of the traumatic experience you had with that earlier polypectomy. You can’t really afford to ignore those polyps. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Valen, you’re just beginning your life. I hope you find some breathing exercises or mindfulness techniques, or something else that works for you. If you can do that now, you will be doing way better than most of us. Anyone else have some suggestions? I think we could all use some! [ more ]
@tulsamom Yeah, stress i killer on my pouch. In my most ‘stress-free’ times my pouch worked like a charm and I never even though about it. Correctly in med school and it’s a pretty heavy load to carry. Any advice on how to handle that stress? I’m only 18 and this is the first time I’ve experienced the stress of a career or college. I’ve been through way tougher things (I almost died from UC for gods sakes!) but this college anxiety is killer to say the least! [ more ]
It sounds like what happened to me when I get super stressed. When the stress goes away everything goes back to normal. But that length of time is too long. I agree with Scott about dehydration. And when I was having a similar situation that wouldn’t resolve at 12 days I asked for Cipro. Fixed it right up. Maybe a little too well. But I don’t even know why Cipro works. But I’m glad I thought of it because my skin was shredded. Good luck!! [ more ]
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J-Pouch ForumsHelp! Need advice now!
So, I probably panicked. It did sound consistent with an anal fissure. The symptoms have fully resolved themselves. It took about 7 days. My doctor told me she would have wanted to take labs and a stool test if the burning/stinging got worse but luckily I didn't have to go through all that. I think it was either eating Sichuan pepper or cake that did me in, combined with being in a hyper-stressful/emotionally triggering environment. I was back visiting the town where I lived when I was first... [ more ]
Have you looked up the symptoms of an anal fissure? It sounds like that may cause such burning and stinging you describe. If such a fissure is located inside the anal channel, it burns if an undigested piece of food (like nut pieces) gets stuck in there. If so, you could try to flush it out with a strong water jet (bidet or shower). Or carefully examine with a finger and a non irritating gel like petrolatum. When I had such a fissure, I could tolerate it during daytime when I was busy, but... [ more ]
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J-Pouch ForumsHelp! Need advice now!
SteveG, thanks for the note and information. Here is the link to the Link to clinical.gov site . Correct high scores and previous surgeries disqualifies at this time. [ more ]
Steve I looked up the treatment and it seems to be a first line treatment. There is a current FDA trial going on for PCa, and it excludes men with prior surgery and high Gleason scores. thank you so much for the information. It’s good to know the researchers continue to try and develop new and innovative ways for cancer treatment. if there is a non surgical/non radiation treatment out there I would be interested, in case the future does not bode well for my prostate. [ more ]
I heard about a new cancer therapy called "NanoTherm" (see magforce.com). But it is still subject to studies (also for the treatment of prostate cancer in the US). And I do not know if it is applicable after prostatectomy, they speak of "focal treatment of solid tumors". [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thank you so Much! [ more ]
Cipro absolutely does it for me. And quickly. 500 twice a day was prescribed, a course of 14 days, for my symptoms related to mucosal prolapse and corresponding bacterial overgrowth. I repeated that dose. I found it best to ease off rather once symptoms were under control rather than stop suddenly. Recently added it back at night, and currently on 250 at bedtime. I also take Rifaximin as maintenance. But it actually seems to soften the stool. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thanks, I appreciate the information! [ more ]
Whenever my GI prescribes me Prednisone he gives me a script for Omeprazole to go along with it. He says it's to prevent developing ulcers while taking the Prednisone. I haven't had any stomach soreness when taking both, maybe it's worth asking your doctor? I believe it's similar to Prilosec. just my two cents. [ more ]
Thanks for the response. I'm not sure why I had the reaction. I've taken Prednisone before without any problems. Maybe in lesser doses. Who knows? Of course, I took a lot of it years ago, when I was sick and before my J Pouch surgery. I try to forget those days. Either way, I just stopped it cold and don't seem to be having any issues, so I guess you guys were right! Thanks for all the help. John [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thanks to all who commented. I have been soaking up sun when it is shining and supplementing with vitamin D, trying to keep up Calcium with diet alone - not the best, but supplements, even liquid, don't sit well with my pouch. My situation was complicated by a bad leg injury a year prior to the colectomy. I jumped down an embankment and crushed the tibial plateau. I'm convinced that the root cause of the injury was low blood count from a guy bleed the week prior, leading to tiredness and... [ more ]
chiming in w the 'wisdom' of 75 yo woman w osteoporosis and cd. have a k pouch after years of problems w the j. had woefully too much prednisone when first treated for cd, which is most likely the culprit. in about one year went from + side of the bell curve to the - side. I've reversed it slightly by: weight bearing exercises; 2 m walking daily; stairs; green veggies and yoga, yes yoga helps bone density. contracting muscles pulls on tendons that in turns pulls on bones and that's what... [ more ]
Hello HK2000, I am a 69 year old woman with an ileostomy; previously had a j-pouch. In 2020 my primary care physician highly recommended that I see an endocrinologist because of osteopenia, and I'm glad he did. I was already taking Vitamin D (50,000 units) once a week for several years and my Vitamin D level has stabilized. I was not taking Calcium and the endocrinologist suggested 1,000 mg a day, so I take a 500 mg chewable twice a day (morning and evening). My endo also placed me on... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thanks for the description. It's interesting how so many people experience this differently. I have watery greenish BMs when I drink green drinks, sometimes, depending on how much psyllium I have had in advance. And my poo randomly smells strange and different, it seems. Sometimes it's kind of like I have had asparagus when I haven't, or sometimes it's smells like it used to when I had a colon, and sometimes it smells completely unprocessed like it did when I was going through chemo after I... [ more ]
For me, it’s aching muscles/bones (like the start of the flu), watery greenish BMs with a distinctive different smell to normal, slight feverish feeling (not enough to register as having a temperature), and mild abdominal cramps. [ more ]
Thank everyone for the replies. Wouldn’t you know it, as soon as my pouch was “threatened” with medical attention, the symptoms improved and I got back to normal within 24 hours. Interesting to note that I passed almost no gas while I had the pouchitis. Just as well, because passing gas while lying in bed plus diarrhea would be a dangerous combination. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsHelp! Need advice now!
Been having burning on and off since pouchitis and some terminal ileum ulcers were found.Little lower abdomen pain at times too. [ more ]
i'm having this same problem. I've had j-pouch since 2000. I get burning and some cramping every time I drink or eat anything recently. I also just got out of hospital for partial obstruction. Does anyone know where this pain and cramping comes from every time I drink or eat? I feel bloated. [ more ]
could also be bacterial overgrowth. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I am guessing, food. I had a chocolate protein bar for dinner last night. At 1am, I emptied before bedtime and BM was black. Today back to brown color. [ more ]
Update: Just chocolate cake [ more ]
Very dark almost black stool is often a sign of blood. Please call your doctor if it continues. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thanks to all for your input. It definitely was a great relief to hear! I think the bleeding comes from her possibly straining. I think doctor would have seen if she had a hemorrhoid, but it is possible that it hides. It is definitely not huge amounts comparatively to when she was sick with UC. Curious to see if she begins to feel better in these coming weeks knowing that she checked out ok. [ more ]
The IPS could cause the belly pain, but I agree - blood in stool is not a symptom of either IPS or Pelvic Floor - - a hemorrhoid that hides and comes arounds every so often sound like a possibility. They generally don’t bleed a ton, but enough to notice. [ more ]
Hi, Glad to hear none of the usual suspects were found. I agree with Scott in that IPS nor pelvic floor dysfunction should cause bleeding. I also suffer from IPS (not surprising since I was a lifelong IBS sufferer). Perhaps you can have your daughter make a note or inform you when there is blood and where found (stool, toilet paper ) and keep track to see a pattern and determine if these are transient events. I know researching and keeping up with pouch conditions is not ideal, however... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thank you! My life blew up between my post and response here. Situation now resolved. Lol i am realizing because of this how much stress plays a part in my symptoms. When i am in my own stress free zone, things settle to some degree. But not a guarantee. And yes, i think they might have mentioned biologics. The surgeon is scheduling me for dilation. So this is news that it might not be necessary and pouchitis inflammation related. Maybe i need to bring this topic up before they start poking... [ more ]
Some doctors seem to go overboard to avoid long-term antibiotic use. I’d rather not be on long-term antibiotic, but for me it’s better than the alternative. If your stricture symptoms are relieved by metronidazole then it’s probably caused by pouchitis-inflamed tissue rather than something like scar tissue. If it’s inflammation then 1) the dilation may not work very well, and 2) the inflammation still has to be controlled. What’s their long-term plan for controlling the pouchitis? How long... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Aha, I may have found it. Is it the survey? https://www.j-pouch.org/survey...8#695026203006853238 [ more ]
Kim, what is the link to the current discussion about preventative measures for obstructions? I can't find the thread....but I am so interested in this topic. [ more ]
Agree with Scott 100%. There is another group discussion happening on what to do if you feel a blockage coming on that you might want to read thru for ideas before it gets so bad hospitalization is needed. Having had my J-pouch since 1992 - omg I can't believe it has been that long and I am now in my 50's! I definitely am in tune with my digestive system and can feel where things typically get stuck - and have a plan when/if I feel an obstruction on the way. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hi - people can do lots of stuff with a bag. I fly often and see how hard you guys work - your job is indeed very physical. I found I returned to full strength after about 3 months. I was moving my college kid into her dorm and lifting heavy things just fine. I would think 3 months off. Have a discussion with you surgeon. Good luck [ more ]
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Hiya, I’m just asking how you got on?? I had ileostomy surgery in November and I’ve always wanted to be a flight attendant but just not sure about it now… [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bill, it sounds like you've really had a tough time with 12 BMs a day for the past nine years. That's so many! I don't think 80% of Crohns patients get an anal abscess. I've got an s-pouch (same as j, just different shape) and Crohns and things have gone well until recently. I'm doing okay I just have to get a stricture sorted out but this is not surprising since I've had my pouch for 28 years. Let us know what the surgeon finds. Perhaps it is a stricture that can be expanded that's causing... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Sara, I have spoken to my doctor, and they have done full panel bloodwork, checked my thyroid and that's it. I cannot actually have anymore CT Scans due to the fact that I have had over a hundred of them on top of about a thousand x-rays and they are worried now about radiation. They have not tested my endocrine system ever. Should I ask my GI guy about that? Right now, it's eating that hurts. Since my infusion on Tuesday I haven't had any pooping problems. Those resolved within mere hours... [ more ]
Seirla, That is a long list and you have definitely been through many trials. I am sorry none of these was helpful enough. You have some good data. Have you talked to a doctor and ruled out other things that might be causing your pain? Have they done a CT scan? Have they tested the functioning of your endocrine system? I'm sure there is more they could check out but I'm not a doctor. Sara [ more ]
I appreciate all of the insight and suggestions. As a list of things I have tried, it's a long one: Typical Exercise: I have tried doing workouts that my body didn't like on a daily basis. Pushups left my shoulders in so much pain as well as leaving them crunchy Keto: Left me in the bathroom all the time because removing carbs turned my poop into water Metformin: was given to help me lose weight, but it turned out I'm Type 2 Diabetic and my doctor can't seem to keep my prescription... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsHelp! Need advice now!
Some J-pouchers do use opiates like codeine to slow things down. IMO it’s best to try to optimize Imodium or Lomotil before doing that. If one of those can give you satisfactory results that’s a simpler and lower risk path. [ more ]
My pouchoscopy went well. Dr said it’s one of the healthiest pouches she has seen. No pouchitis. No inflammation. I’m currently going thru pelvic pt. I recently had a prostate biopsy. They gave me Tylenol with codeine. I went 12-14 hrs without bm. Is this something jpouchers take to slow things down? If so, I would assume my GI can prescribe it. I get my results from biopsy in a couple days. I really need it to be good news. [ more ]
Hang in there. I spent many months contemplating an eventual reversal. But things did get better. Though not perfect, I continue to improve. You will too. [ more ]
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J-Pouch ForumsHelp! Need advice now!
That is great advice. Thanks so much. I have a call with my GI this week to give something a shot. I will make those suggestions. Zofran seems like a smart thing to have around. [ more ]
Tindamax I have used under generic name Tinidazole. It's in the same antibiotic family as flagyl. You have to keep in mind the families of antibiotics because if one sickens you a cousin antibiotic might. Flagyl and tindamax are cousins in the nitroimidizole family much like cipro and levacquin are in the floraquilone family. So use the relative antibiotics at your own risk. At a minimum, as Scott suggested, have Zofran at the ready when you experiment with cousin antibiotics of ones that... [ more ]
Good advice Scott. I will keep on trying and try the Xifaxin and or Tindamax. Biological meds are definitely on the board also. [ more ]
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J-Pouch ForumsHelp! Need advice now!
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Thanks for those responses. I asked my hospital care team about these points, because I have read these on these forums that I've been pouring over for months (starting to train my pouch and using fiber instead of introducing yet another med, lomotil). They told me not to train my pouch this early because it could back up to the suture line which is still healing (seems like it'd have to be a lot of poop, but I'm not the expert here). And for fiber, I was told not to use it this early... [ more ]
Everyone is different when it comes to this for sure. I tracked my movements for the first couple of weeks and averaged teens for the first 2 weeks and then began to see a downward trend in frequency. I stopped tracking once I got under 8 a day and now I usually am around 5 in a 24 hour span. 6 months out on the 21st. I would keep food intake to simple/consistent items. This will help the pouch know what to expect and then you can introduce new foods over time. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hi, I just had gallbladder surgery on 2/24/22. I had been having pain in my upper right abdomen along with pouchitis symptoms, which I thought was a flare. I have been on a continual regimen of Cipro/Flagyl for years, and 3 days before I ended up in the ER, I had stopped that combo and started Xifaxan for pouchitis. I went through the whole gamut of tests, and the ER doctor told me I had a very angry gall bladder and would need to have surgery. That was a Tuesday and I ended up having... [ more ]
That stinks- hope you’re doing okay whatever you decided. I had my gallbladder removed 7 years prior to my j pouch and it was not a huge deal compared to my pouch surgery. It was laptops, so just 4 tiny cuts that they just put those little bandaids on to close them up. When in initially went to the ER for the stones, they sent me home with an appt to see a surgeon. The ER doc said they usually don’t operate immediately unless it’s infected (I guess they can tell by labs or the scans). They... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsHelp! Need advice now!
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Hi I just wanna chime in to say that Dr Remzi removed my entire rectal cuff and did the hand sewn anastomosis. I got my life back (had many problems before) [ more ]
I consulted with both Remzi and a Kiran before my surgery. K-Pouch has been my back-up plan, which is why, among other reasons, I elected to have Dr. Kiran perform my J-Pouch surgery and would use him again should the pouch fail to meet expectations. Because I had high grade dysplasia the cuff was removed in the first stage procedure which has given me peace of mind but probably added to the challenges of adjusting these past 9 months since stage 2. For either K-pouch, or advancement, I'd... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thank you again Doug [ more ]
Best of luck with the surgery - you are in a tough spot, but you have come this far, and closing the stoma in some crazy way is the best way to tell. If you have regular Pouchitis - they may put you on a biological medicine. I hope the Pouchitis goes away for you. It does indeed for most people. Hang in there. The final surgery is the least difficult for most people. Please let us know how you did. Best Doug [ more ]
Thank you! [ more ]
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J-Pouch ForumsHelp! Need advice now!
On YouTube I was recommended ,Connect Physical Therapy.the lady is very funny and recommends spreading your knees far apart to empty.Ive been trying this and it works so far. One of her videos is called How to empty your bladder and bowls for better sex for men. The comments are very funny. It's for people with colons but might work. [ more ]
Mount Sinai is actually where she goes. Since she is 14, she sees the pediatric g.i. - Dr. Dubinsky. However, Dr. Kayal is my g.i. doctor. She is great- very knowledgeable as well as kind and caring. I ended up getting an appointment at the place recommended which is now Maiden Lane Medical. Today was evaluation appointment- so I will see how it goes... [ more ]
Mount Sinai IBD Center has a lot of resources for IBD patients, and your daughter might get an appointment with a GI that specializes on j-pouch there, who can refer her to a pelvic floor therapist that they work with. This GI https://www.mountsinai.org/profiles/maia-kayal there has been publishing a lot of articles on j-pouch recently, obviously focusing her research on j-pouch. You can find her publication list here, look at the titles of her publications: https://plu.mx/mtsinai/u/mkayal/... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anticoagulants don’t prevent hemorrhoids, though they might reduce the likelihood of a thrombosed hemorrhoid. Straining at stool can sure cause hemorrhoids. [ more ]
I’m on pretty heavy anti coagulants for another illness so I’m not sure I could develop a hemeroid could I?, however that’s just my assumption as for a fissure, I don’t think it’s this, it isn’t the type of pain associated with a cut Now that you say that, I have been finding it a bit harder to pass stools (especially on days it’s particularly bad) this also may have started just before the pain did but I’m not sure tbh [ more ]
You might have a small anal fissure or an inconveniently located hemorrhoid. Did you have any episodes of difficult-to-pass stool just before this pain started? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Mag Citrate won’t clear most blockages, and blockages don’t make it difficult to empty a full pouch. A stricture is a possibility, and I wouldn’t suggest pouring Mag Citrate in behind it. Increasing your fluids might help. If you are inclined to self-diagnose you could possibly check the pouch outlet by *gently* inserting a well-lubricated, preferably gloved finger (the anastomosis may be out of reach, though). Some folks who have trouble emptying use a catheter to flush out the pouch. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsHelp! Need advice now!
Please check this out: https://www.j-pouch.org/topic/...tor-for-your-j-pouch I just posted this after I responded to your question. There are some very useful responses there. [ more ]
Thank you! [ more ]
I would first find the university/research hospitals that are driving distance up to 1,5 hr. I drive that much to see my surgeon and the GI. Then, I would look at the professors at the GI departments that see patients (not all do, some just do research), and mention IBD among their research/clinical interests. Then, I would look at their publications in Google scholar to see which ones published on IPAA, pouchitis, etc. If none has, which is likely, then I would pick the one who published... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hi, FF. Thank you so much for sharing your journey with me. I apologize for the delay in responding--it took a while for me wrap my head around all of this. Yesterday, I left a message for my GI guy stating that I want to hold off on the humira for now just to do a little more research on everything. I am waiting for my NY surgeon, Dr. Milsom, to set up a TeleHealth session with me. I'd be interested in hearing what he thinks about MAs for PV fistulas. Right now, the entecort has been... [ more ]
Hey, how are you doing? I'm sorry you're going through this.. I definitely empathise with you.. I've got one or two P-V fistulas that have taken me through hell the last couple of years... But in answer to your question, I've tried Infliximab (Remicade) and Adalimumab (Humira biosimilar)... My fistula started in 2019 with pretty full on symptoms from the outset.. I had mixed results from both biologics but please don't let it put you off... If the lottery ran on bad luck I'd be a billionaire... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thanks so much for your reply I have a consult with him this week. I have a list of questions already!! thanks so much il see what he says [ more ]
I've had 100%! Positive experience with Dr Shen and his team. I also had my surgery at Columbia with Dr. Kiran. Excellent experience all around. Biofeedback was discussed for me, but I am doing well now and have deferred it. Biofeedback does not address the prolapse, but rather a "functional" issue with how muscles are firing in poor coordination so as to interfere with emptying. This is issue is diagnosed by ano-rectal mammography. It can occur along with prolapse, but they are addressed... [ more ]
Thanks so much for reaching out. It’s a big decision. I see him next week although I’ve been informed via a second Dr that biofeedback my be beneficial to the prolapse. I don’t understand how that could help a prolapse but we will see what Bo says next week. I hope you get relief and improvement too [ more ]
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J-Pouch ForumsHelp! Need advice now!
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I have resurrected this old post as more than 8 years later nothing much has changed, in and out of hospital, more pelvic abscesses and waiting now for referral for some sort of surgery. I was referred to St Marks in about 2014/15 and was gobsmacked when the surgeon said he would redo the pouch (and not repair) despite me only having 2 metres of small intestine left! I declined, it has been particularly difficult managing a high output stoma with 2 metres, I would hate to think what it would... [ more ]
Goody, have you been seen at St Marks? That is the hospital that seems to see all the people who have had no joy anywhere else. It is my primary hospital but if you haven't tried there, it's worth a shot. The specialist pouch nurse Zahra Perry-Woodford (0208 235 4126)is fantastic at guiding you through the referral process and gives excellent advice, too. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hello. Iv had my j pouch for 32 years and it’s been amazing. Some pouchitis/ blockage/ abscess in the past but flagyl and cipro got me better. I have now got some joint issues, pain /inflammation and been on monthly infliximab infusions but currently taking Mercaptopurine and sulfazalazine/hydroxychloroquine which have kept me well but now in hospital with severe abdominal pain all low down and all across and having scans, camera etc to see what’s going on but I’m terrified of losing my... [ more ]
Diane, I’ve had my Jpouch for 29 years after suffering with UC for 9 years. Many complications the first few years, mostly from not sticking to a low residue diet. Had a Jpouch redo 13 years ago, think the first one was put in upside down? I was unable to pass digested food regularly. All fixed but I did have pain. Used a heating pad. Massages. Maybe you have a similar problem? Just diagnosed with CD last week but still feel ok, only have a fast metabolism and have diarrhea. A good doctor... [ more ]
My DH is. going on 27 years. That pain might be sibo..(which my DH has). Goes to the University of Penn to have it checked once a year.. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Nicky, I suffered for a good 6-9 months of incomplete emptying. It’s completely normal for you sit, go , cleanup, wash up and then go running back to the toilet. I thought things would never be right for me. I was told I need more time to pass. It is so true! Now nearly ten months later my pouch is getting closer to working the way it should be. hang in there. better days are ahead for you!! [ more ]
Hope things soon settle but they will. Take extra care xxx [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hey, I have similar issues with emptying too.. I can almost guarantee that after I think I've finished, by the time I've made it to the sink to wash my hands I'll need to go again. It can be very frustrating! I've always kinda thought it was just a part of having a pouch so just put up with it, but I mentioned it to my pouch nurse at last appointment and she was annoyed I hadn't mentioned it sooner 😂, she said it sounded like I just needed my pouch dilating, which I think they can do quick... [ more ]
I stand up, bend over like I'm touching my toes for about 10 seconds, then sit back down. I can literally feel gas or stool, whatever needs to move, shift down. Helps me empty! [ more ]
I’ve found that drinking lots of water helps keep my movements better and easier to empty my pouch. I usually try to have a minimum of 64 ounces of water (MORE if the coffee intake is a lot that day). I’ve also found that if I can wait until I REALLY have to go, relax, and let gravity do some of the work that helps too. Did I mention drink a lot of water too? 😆 [ more ]
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J-Pouch ForumsHelp! Need advice now!
BTW if you’re anxious about blockage and haven’t had one before…you’ll know if you have one. They are VERY painful. Like- groaningly, screamingly painful. Can barely walk painful. So if you’re not experiencing obvious pain then you don’t have a blockage. [ more ]
Sounds like a blockage, But as you say, you don’t have pain. Weird. It’s pretty hard to get constipated! But it can happen- I’ve had narcotic pain relievers do this before. As long as you have no pain and not throwing up, I wouldnt worry overly. It’ll clear. Lots of water and you’ll be back to normal. [ more ]
You never know with the bread thing, you can always try and recreate it. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Diana, where are you located? I'd be going to a major hospital to see what could be done to help you. You need another opinion or two. [ more ]
Ilex barrier paste is the best I have found. Amazon. I understand your pain as I have that problem too. Clean well. Apply paste as often as necessary [ more ]
Hi Diana, I am very sorry to hear of your troubles. I am confused as to why stool has been coming out of your bum if the jpouch has been disconnected via a ileostomy. as to whether you can sue for malpractice who knows? once we sign that surgical consent we are signing away our lives. My understanding is that if a doctor follows accepted medical practices its hard to sue since surgical outcomes are not guaranteed. My further understanding is that removal of pouch and anus are tough surgical... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I have a doctor who just doesn't really care quite honestly, and to try and see another specialist in my area is impossible. There really are not that many doctors familiar with the entire picture. My family doc has continued to refer me to different specialists and now it's been three weeks of constant pain, no sleep, and the bleeding has begun. Thanks, Chook, for the info about the prolapse and pelvic floor. I am certain there is more going on - on top of the flap over surgery I had in... [ more ]
Have you read about the inner sphincter? It's what stops you pooing while asleep,it can become too tight if it's holding in liquid alot.instead of straining try relaxing and breathing to relax your inner sphincter and muscles.alot of people are in a rush when using the toilet but you need to relax and let go.But it sounds like you have other things as well. [ more ]
I just take it to try and have less BMS by thickening it up and the stool seems easier to empty . [ more ]
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J-Pouch ForumsHelp! Need advice now!
So I went to get examined by my GI today and he said it felt more like a bone than a lump. He said by examining me he could tell it wasn't a fistula but an abscess was still possible, although he didn't think that was it either. He's scheduled an MRI for me just to put the issue to bed. I'm pretty relieved at the moment, but will be fully relieved based on my MRI results. [ more ]
I just started them yesterday and they do seem to help the pain. It's not a searing pain but more of a dull pain when I sit or sometimes when I walk. [ more ]
It may well have gotten bigger, and the pressure inside may have increased. Do the hot compresses seem to be doing anything? [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsHelp! Need advice now!
Thank you very much for your reply. I am urinating, although it’s hard to determine the quality since it’s often mixed with (small amounts) of stool. But I’m pretty sure it’s clear and light coloured as it should be. I drink plenty of fluids throughout the day. It may be a coincidence that this is happening after the ergocalciferol jab. I’m really not sure. I made an emergency appointment with a gastro and had bloods taken for a follow-up soon. thanks again [ more ]
Although ergocalciferol can sometimes damage the kidneys, your reduced pouch output suggests that something else is going on. Are you drinking enough fluid? Is your urine light-colored (as it should be)? [ more ]
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J-Pouch ForumsHelp! Need advice now!
I think you've got time to find the best surgeon. I went 3 months from high grade dysplasia diagnosis to surgery. After 40 yrs of colitis it wasn't a shock, but I felt the only thing I actually had control over was finding the right surgeon. I scheduled three consultations before deciding which surgeon to use. I got in to see Dr. Kiran at Columbia - virtually - very quickly after having waited two months plus to see Dr Remzi, and deciding his open abdominal surgery approach was not for me. [ more ]
I have an appointment with Dr. Remzi but not til April 4th my gi doctor thought that may be too far out and something needs to be done sooner. Have an appointment with doctor Rolando Rolandelli mid March. I thoguht Remzi did Kpouch? [ more ]
Dr Kiran at Columbia also for a second opinion. He and Dr Remzi of the same caliber reputation but Remzi does not do the K-Pouch. Kiran performs them regularly. I scheduled consults with both of them (and a third surgeon) before proceeding with my surgery last year. Now with virtual appointments it is very easy to get multiple opinions and an approach that you are comfortable with. good luck! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Great news! Actually, your symptoms are similar to how my pouch behaves during the first days of my period, when I get strong contractions and hormone changes. [ more ]
I am glad to hear there is nothing wrong with the pouch that requires the usual treatments. Hopefully your theory of pregnancy related Pouch complications is correct, because if so it will be a very temporary issue and you will be able to move past it. [ more ]
I'm glad there doesn't seem to be anything awful going on. If you've been straining to try to pass gas that might explain the painful enema insertion. Folks have described a bunch of positions, contortions, and maneuvers to facilitate passing gas (on and off the toilet). My favorite name for this is bathroom yoga, coined by one of our wittier members. You might try searching for some of those posts and seeing if any of that helps. Good luck! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thanks everyone. I saw my gasto’s PA, and they are going to do a scope next Wednesday. That will hopefully tell me if the ulcers are inside as well. [ more ]
Kimmie, the ER can help in an urgent situation if you are bleeding heavily. To work out the cause and treatment of your ulcers you’ll need a good gastroenterologist. Yes, as others have written, Crohn’s can recur whenever and wherever. [ more ]
This really isn't correct because Ulcerative Colitis technically only effects colonic tissue. J Pouch surgery removes all colonic tissue except the rectal cuff, inflammation of which is called cuffitis. Furthermore there is an emerging scientific belief based on actual recent studies that the old labels of "Crohn's" and "Ulcerative Colitis" are simply not applicable to inflammatory bowel disease that develops in pouches and post-ileostomy. Instead, it is believed that it is a new, as yet... [ more ]
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William J. Johnson
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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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