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J-Pouch ForumsHelp! Need advice now!
Pain in upper abdomen
Paul HPaul H
Paul H Been to Doctor, after all that I was right, its Gastritis. 🤔🤔 [ more ]
Paul H Thank you all very much. Thankfully I had a moderate BM on Sunday followed by more & the pain has gone but still sore & feeling delicate & weak. Tonight I had a small baked potato without skin, puree carrots & some beans, all well tolerated. I have a headache that Paracetamol just about releives & am drinking plenty of liquids with added Sodium & Potassium. Waiting for the clinic to call. BTW, the stool softener, Macrogol was a disaster, made me leak uncontrolled that... [ more ]
Jan Dollar You have had good advice. I would also add monitoring for fever and/or low blood pressure. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Best j-pouch docs (including surgeons) in Boston
S scallop
scallop Hi and thanks so much. I went to the wrong surgeon initially which led to a lifetime of problems. Appreciate the recommendation and will be very thorough. best debbie [ more ]
jhills Dr Peter Marcello at Lahey and in his fifties and is the leading surgeon there and has trained others on the east coast and central part of our country for years on jpouch surgery done laperoscopy way with tiny incisions. His office also sees cancer patients needing intestine surgery as well. He is still amazing!!! Do as many consultations with different surgeons as you like because you are paying them. All my best to you! [ more ]
scallop Hi Michael. Thank you. Everyone has good things to say about the docs at Lahey but nobody seems to have a recent experience there. Victor Fazio, who redid my j-pouch, trained there long ago so clearly this was once a great place to j-pouch surgery. Not sure there is anyone great in Boston now. Best, Debbie [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bad sleep, actually no sleep at all
X xwaterice
xwaterice Thank you everyone for your replies, honestly they had made me feel so much better. I wish you to spend joyful pouch-holidays in advance! [ more ]
RHolt I usually eat around 6-7 pm. Probably if I ate earlier, it may help with sleeping through the night, but my big socializing is sharing meals with others, so I hate to insist we eat earlier than 6 pm. I also have Nancy's probiotic yogurt about 5-6 days a week for breakfast. I put some homemade granola and blueberries on top and it is a satisfiying breakfast. Nancy's yogurt says it has "41 billion live probiotics" in each 6 oz serving, so I think that is plenty for me. I don't mind getting up... [ more ]
Sara Marie Time for some midriff bearing or hugging outfits! Show off that stoma scar! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Right side pain- CT scan “normal”
A AmyH
duck11 I had similar issues and a pelvic floor therapist really helped. All the nerves and tendons and such get shifted around in surgery and from adhesions after, and I was amazed how much pain it could cause. Similar to what you are saying, I felt like I had a pinched nerve or twisted muscle. It took a long time and still acts up, but now I know stretches and treatments and can manage it myself. I highly recommend it assuming your surgeon doesn’t think anything more serious is happening. [ more ]
AmyH Jaypea, thank you for your response. My doctor does think it could be nerve related. I have had sciatica pain the past with a back injury but this feels different. It is in the front right pelvic side and feels like a strong cramp that won’t let up. [ more ]
Jaypea Hmmm....radiating down your leg? The first thing I think of is nerve damage like sciatica. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I don’t remember eating glass….
H HeatherV
HeatherV He did not, but interestingly enough - since getting this temporary loop ileostomy, I still empty pink tinged liquid mucous stuff from my pouch, and at times it is quite a bit (maybe a 1/4 - 1/3 cup at times) and I go several times a day - but there is absolutely no pain associated with it whatsoever. He will re-do my pouch in March, which I know involves shortening the rectal cuff - which he told me was last too long by the original surgeon 🤷🏼‍♀️ [ more ]
AndyY Thank you for replying back Heather, Did the doctor/surgeon explain why those issues are causing you to have the feeling of “eating glass” bathroom situations? [ more ]
AndyY ❤️
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J-Pouch ForumsHelp! Need advice now!
Jpouch removal surgery?
G goldie
Caty Hello Goldie, People deal with medical issues on their own terms. I've been in your shoes; it's a difficult decision to give up a j-pouch and go to a permanent ileostomy. In 2007 after 15 years with the j-pouch and complications from a vaginal/j-pouch fistula, I had my j-pouch removed, my anus closed up, and now have a permanent ileostomy. My ileostomy is on the left side of my abdomen just BELOW my waistband. The ET nurse and I found the perfect spot together. If a person is working with an... [ more ]
Bootain Thank you so much Bill! [ more ]
Kushami ❤️
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J-Pouch ForumsHelp! Need advice now!
Gut Pain
J jombee1
Sara Marie Also, potassium helps. If I eat a banana a day, it keeps the leg cramps at bay. I have potassium powder for when I don't have a banana, but I haven't figured out what to put it in yet. I also have banana powder, same issue. How does one eat banana powder? Acquired taste? [ more ]
Chopkins Have you had any bloodwork done? I had similar symptoms and found I was low on vitamin D, magnesium and calcium. I have been taking them for over a month now and it has helped with the leg, feet and joint cramps but not with the stomach pain. [ more ]
PouchLogic Pouchitis? The other thought being an obstruction. If you have been continuing to eat even a little the obstruction may not clear. It definitely sounds like you need to go see your doctor and sooner is better. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Is this pouchitis or inflammation in the small intestine?
B Brellis
Sara Marie Dang, I was hoping it was a simple thing. I once had constant pain that moved around my chest and abdomen that I was convinced it was a big problem. I went to the doctor and had all these scans (because I had colon cancer in the past) and they ended up telling me I had acid reflux. I have had intense lower back pain before but never for extended amounts of time, and usually it was associated with menstruation. I have had dull lower back pain from pouch inflammation, but it didn't persist for... [ more ]
Brellis I dont think its gas because I often have gas problems but thats usually fine especially when I can let it out. This feeling is like an intense ache that comes and goes in waves (mostly on than off though). I dont know any better way to describe it for my self than when you were younger and had a stomach bug or like a flew and your stomach felt off .. just the difference that almost all pain is in the back down towards my bum. I’ve already been at my local doctor just to see so it wasnt my... [ more ]
Sara Marie Have you ever tried the anti-gas medications? Sometimes gas can be very painful. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need advice on fistula surgery
J j-poucher
BK 123 You will notice it. It almost felt like there was a bone on the other side of the skin, it was solid to the touch rather than soft. If you are concerned, an MRI may be in order. [ more ]
Former Member Thank you. So I would notice it? I think what I have is hemorrhoids from all the straining but sometimes I wonder. Thank you very much for your reply [ more ]
BK 123 I had a drain placed in my fistula as well. It was a bit uncomfortable but it did not get in the way of my life one bit. After about three months, my surgeon removed it and the fistula almost healed completely. An MRI showed that the fistula is still present but not as active before the procedure. I will say, that I'm on Humira and Tinidazole, which has worked wonders getting my pouchitis under control, and thus aiding in the healing of the fistula. The fistula drainage seems to come and go... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Doctor in NOLA
SB southern belle
athena Hi! Well, I hope I can help; I lived in NOLA when I first came down with UC, and had all my initial treatments there, including meds and surgeries. I had my initial pouch surgery there in 2011, so I can tell you who NOT to see as a surgeon—Dr. Sean Mayfield. He messed my pouch up badly, lied to me about his (in)experience with them, ignored my allergies, and I have suffered from his incompetence for years. Ochsner wasn’t great either—I had to go there to clean up the mess Mayfield made (he... [ more ]
southern belle thank you for your response. I have taken cipro and it helps but only when I'm actively taking it. Not a 2 week round. I actually took it for 6 weeks trying to get a skin rash under control and it helped til I stopped. I do know that I need a gastro with Jpouch knowledge. And I know they do the surgery at Ocshner Hospital in NOLA. Hopefully someone on this site can give me a rec. [ more ]
Scott F Although some surgeons provide extended ongoing care for their J-pouch patients, most J-pouchers get care from a gastroenterologist. It can be hard to find a J-pouch-knowledgeable GI unless you are in the same area as at least one active J-pouch surgeon. Accidents are one common sign of pouchitis, which usually doesn’t clear up without treatment (typically a couple of weeks of Cipro or Flagyl). I wouldn’t expect loperamide to help much, for most of the causes of accidents. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I feel like I’m suffering
S Shy
Rudy I am so thankful that I found this thread, not just for the I information I receive, but also as a way to offer support to our “pouch pals.” I had my surgery in 1981 at the Mayo, and it seems I might be the old-timer in the group. I initially posted to see if others have had any bladder related issues or issues concerning abdominal scar tissue. I was part of a group that was being tracked for several years, and it seems that the surgery has evolved. Shy, hope you’re feeling better this week... [ more ]
Maverick Plus Any updates? I sure hope you've found some answers! [ more ]
girlt Hoping to hear how you are soon, Shy, whatever the case. There is support here for you to help keep you from feeling alone, and maybe practical advice to help as well, if you want it just ask - what foods to eat and what to avoid, supplementation, products to soothe pain, etc. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Scar Tissue
R Rudy
Rudy I hope UT works out. [ more ]
Sara Marie Yes I’d like to be connected with someone before anything serious happens. The odds are against me at this point! [ more ]
Rudy I think UT Austin would be a very good place to check out. Do you have anyone who could refer you to UT? Do you have a primary or family physician who would be willing to do a referral? In the meantime, perhaps a referral would help get you to the the “hard to reach” GI. If if she doesn’t want to see you, she might know of someone who would. Be a squeaky wheel! You definitely need to have someone to go to in case of an emergency. Please do this soon, and keep me updated. I’m eager to hear of... [ more ]
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J-Pouch ForumsHelp! Need advice now!
My pouch never feels completely empty
L LIGuy11
CTBarrister Hyoscyamine is the generic of Levsin. It is an anti-spasmodic that is typically taken 45 minutes before meals to calm down a spasmodic pouch. What it's really designed to prevent is machine gun bursts of bowel movements after eating meals due to the bowel spasming or excessive motility. I don't think it really has anything to do with incomplete evacuation of the pouch. It's designed to prevent the opposite problem of explosive diarrhea due to spasms of the pouch or bowels. There could be... [ more ]
tf Yes, sorry I misspelled. I only use prn. At one time I needed it often. It works for me. My bidet hooked up to toilet seat. I have cold, warm & hot. It depends on how sore I am. Mostly warm. [ more ]
Sara Marie I looked up hyoscyamine-tried to look up "hyosiomine" but the internet corrected me. Hyoscyamine sounds intense! Is that what you meant? Do you use your warm water bidet for an enema? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Random surge of diarrhea
ValenValen
Valen @skn69 Yep! I’m almost 100% positive it was food poisoning from some raviolis I ate on Saturday and Sunday. I wasn’t sure but when my mom started having my same symptoms and she also ate the raviolis I just put two and two together! [ more ]
skn69 Have you had a covid test recently? I had someone on my site (K pouchers) who showed exactly the same signs...slight cold-like symptoms then stomach upset, diarrhea, etc...it was a very unexpected result but... If not, what have you been eating? Have you had an allergic reaction to any foods? Stomach flu? It is the season...and it is going around, and around... How are you doing now? Has it passed? Try dry toast, tea, rice, applesauce and bananas (not all together)...etc The BRAT diet helps... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Emergency lysis surgery for adhesions, now constipated
WinterberryWinterberry
skn69 So sorry for this mess...try to walk as much as possible...it helps. If you can't exactly walk, try bouncing up & down on your toes while standing...it keeps your guts moving or at least can help to get them started again. I never had an ileus until my mid-40's, dozens of abdominal surgeries and zip...then I had a pouch valve redo and everything was fine until it wasn't. For some reason, your guts decide sometimes that they need a break and go to sleep after major trauma. They will come... [ more ]
Winterberry I’ve been admitted and have another NG tube in my nose. My second in 10 days. They did a CT scan with contrast dye. Nothing is worrying, just that my bowels decided the sudden surgery and manipulation, etc., was all too much and they went to sleep. My first question was about my J pouch. They said it looked fine. Just a lot of gut distension and small blocks, even though I barely ate a slice of toast. I’m on IV fluids and NG tube. I suspect I’ll be here a few days. I’ll try to update so that... [ more ]
duck11 What an awful experience, your h9me experience sounds a bit like an ileus. I had a few post op even after my bowels had woken up, they then proceeded to go back to sleep. The pain meds definitely don’t help things but I understand how hard it is when you are in so much pain. Glad you are back in hospital, sounds like where you should be. Hopefully this is a one off blockage incident that you can leave behind you. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Vacation Tips and Advice
MiguelitoMiguelito
Former Member ❤️
RHolt On the travel trips, I am sure it is too late, but I do what the others have suggested and I also chew pepto bismol tablets several times a day because it seems to calm my intestines down, especially in gas production, which is what can make bathroom urgency an issue for me. As for rehydration needs, I use something called Vitalyte when I go backpacking. It has elecrolytes but is not as strong tasting as gatorade or some of the other electrolyte formulas. During the work day (not traveling)... [ more ]
Linzalisha Thank you so much for both replies. 💕 [ more ]
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J-Pouch ForumsHelp! Need advice now!
COVID and the J-pouch...using Paxlovid?
samwoldsamwold
NurseKaren I am late to this thread but to answer the OP's question, most if not all meds get absorbed in the small intestine. Paxlovid is causing me the most horiible diarrhea ever. I am literally crying and bleeding almost constantly. Is there anything to do? [ more ]
Sara Marie Dehydration is pretty horrible. Is the gut stuff caused by the paxlovid? Out of the friends I have who got COVID, the one who took antivirals has been sick the longest. Weird, huh? No one went to the hospital....yet. [ more ]
samwold Reducing symptoms does reduce the chance of hospitalization, so that makes no sense. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Acute arthritis pains which meds?
L LoveLife
LoveLife Thank you. I will go to the doctor tomorrow and ask about Tylenol. [ more ]
Mrs P Hello, I’m so sorry for your discomfort. I have arthritis in my thumb and feet plus lower back pain. When my GI Doc said no more Aleve I tried Tylenol. 1000mg 2x daily. It took a little bit before I got relief from it, but I did. I now try to only take 500mg 2x daily. I have also used Voltaren gel, without much relief. Curious to hear about Magnesium from others Best of luck to you! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Exertion of Bowel Movements
BA Bill A
Bill A Thanks for your help [ more ]
SteveG Straining can cause blood to gather in the belly. But I don't know if that's enough to have your heart rate increase like that. I experienced that straining could cause me circulatory problems because of a lack of blood in the head, especially if I was low at weight with too much diarrhea. It may help to breathe deeply instead of straining, to support digestive movement. That works easier if you don't take too much loperamide during daytime. Another point is Scott's advice to stay well hydrated. [ more ]
Scott F The keys to a bowel movement without significant straining are stool consistency and proper muscular control. Stool should be unformed, roughly the consistency of pudding. It's usually straightforward to get to that point by avoiding bowel slowers, adding the right amount of fiber supplementation, and drinking plenty of water. Muscular control comes naturally for some, but for others it must be learned. One simple thing that I've found helpful is to try to pee without pooping most of the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J pouch & Suppository
L Lawrence
Sara Marie I have no idea what they did! It was 2004. If they told me anything about it, it was while I was super drugged up from the drugs they gave me, so there would be no way I would remember. [ more ]
Scott F The risks also depend on whether you had a stapled procedure, which leaves in a rectal cuff that can occasionally become malignant, versus a hand-sewn procedure, which sometimes removes essentially the entire rectal cuff. [ more ]
Sara Marie Ok, well that sounds like a good idea since I had colon cancer, but it was never recommended to me for that! Anyone know of a J-pouch specialist in TX? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Feeling of poop but cant
SJ Sean Jenkins
Sean Jenkins I am good now, I think I just need some pot or valium lol, Im such a planner and I need to realize that my body has acceptable operating ranges. [ more ]
AMB I hope you're feeling better, but if it gets really bad, ER might make sense. j-pouchers often end up with some stricture around the loop (temporary) ostomy take-down site that can result in obstruction or partial obstruction. The surgical approaches to taking down the ostomy vary, but both ways they do it can result in some narrowing at that spot Not sure if you're in the same boat. Nausea and abdominal pain can indicate some partial obstruction. It's important to drink plenty of water or... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Enema for a scope
Patricia _Patricia _
Scott F Pouchoscopies are generally quick and easy. It will be over before you know it. [ more ]
Patricia _ Yes [ more ]
Scott F The enema tip is generally quite small, so it’s unlikely to stretch anything. If it’s being administered to you make sure the volume is small, about 8 ounces/230 ml. If the staff got confused and thought they were cleaning out a colon a much larger volume might be used, and that wouldn’t work with a J-pouch. Is this your first pouchoscopy? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis or Cuffitus
Patricia _Patricia _
Patricia _ Thank you. [ more ]
Scott F You can get a false negative result for C. diff when on (or recently on) antibiotics, but I wouldn’t assume one way or the other. It’s most commonly treated with vancomycin, but can sometimes be very hard to get rid of. Very persistent cases are treated with fecal transplant. Other antibiotics for pouchitis include rifaximin (Xifaxan), Tindamax, Augmentin, and a few others. If antibiotics don’t do the trick then biologic medications like Remicade, Humira, and Entyvio can be used. [ more ]
Patricia _ Scott, What would be the treatment for C. Diff.? If it does not show up on a test because of the antibiotics, do I have it? What would be the antibiotic to use for Pouchitis if Cipro + Flagyl does not work? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need help w/ gas and odor
MM Mark Miller
Former Member ❤️
Kelleydg Yeah, at the doses of husk that I'm taking, I prefer not to add all that extra sugar to my diet. I have also read that stevia is better for your health than the aspartame. Costs more though. But it's natural. Although we are pooping without colons: so "natural" is just so overrated for us. Lol! [ more ]
roadshow For me sugar increases frequency more than almost anything, except maltitiol which I avoid. I've never had any problems with Stevia or Splenda. I'm also on a low carb diet and sugar is a big no no. [ more ]
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J-Pouch ForumsHelp! Need advice now!
What the ?????
Mema 1Mema 1
Mema 1 Thanks, Doug, I'm wondering the same thing. I think I feel better this morning but will know better after I have something to eat. I've been on Cipro for about four years, but my doctor doesn't have me rotating them and I think that it's stopped working. [ more ]
Doug K I wonder if you have a little blockage, and only liquid can make its way out. I hope you feel better. Maybe try to drink a lot of water and flush it. What antibiotic regimen are you on? I have needed an antibiotic for about a year on my JPouch also. Mine is only 16 months old. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Dallas surgeon for j-pouch
JH Jessica H
Mysticobra Your welcome. And thank you too. My journey is done. I hope yours goes well. And you found a good surgeon. Good luck on your journey. Richard. [ more ]
Jessica H Thank you so much for your response - I'm sorry it didn't work out for you - hoping it might for me, but always prepared. I think I've found a doctor in Dallas - Jefferson Hurley and I'm going to have a consult with him. My surgery was an emergency and I didn't get to pick the surgeon who removed my colon and I absolutely do not want to use him for anything else. Good luck in your journey! Jessica [ more ]
Mysticobra Although no fault to my surgeon. My pouch didn't work. She was very good. (anybody dealing with me has to be good. I'm not an easy person to deal with in surgical situations) But she is in Ft. Worth. Not sure about Dallas I'm sure they have a competent surgeon there. Closer to home the better If you need her name I can pm you. She may know of some there. Richard. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Obstruction or something else?
A AMB
AMB I only ate the heart of that artichoke and the soft layer of the leaves! But that was enough. I wonder, too, if psyllium husk later than usual that day may have added to the problem. Dr Shen's NP confirmed that these issues associated with narrowing at the surgical site are pretty common. Her advice was to stay on clear liquids a few days, advance to regular liquids and then stay on soft foods with no fiber until the procedure 9/6. And if I run into more problems to head to NY Presbyterian's... [ more ]
CTBarrister AMB, glad to hear it passed without resort to vomiting, or intubation of the dreaded NG tube. Important question: did you inspect your BM to see if there were undigested artichoke leaves in it? The nature and quality of the BM may have provided some clues on what was causing the obstruction. If not, I am sure Shen's upcoming scope might shed some light. [ more ]
AMB Thanks to all who provided guidance and support. A call with the (better) GI in the local group last night ended with a recommendation to try a dose of Miralax in the morning. It worked. Still sore and will stay on clear liquids a while more, but the Miralax did the trick to clear the area of obstruction, I think probably entirely. If I get any further insights on this from Dr. Shen's group will post here. But for now - another survivor. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need to see a Dr
KennyJG44KennyJG44
KennyJG44 I thought I might have caught a break today - I have a fellow JPoucher who is unfortunately a frequent patient at NYU, and he was kind enough to get in touch with one of the PAs on my behalf. That ended up getting me in touch with 3 different admins, all of which told me there were no immediate openings, and that I should take an appointment and go on the wait-list. That was after I explained to them the urgency of the matter, and that I was already on 2 waitlists. I can't believe it's so... [ more ]
KennyJG44 Thanks @Scott F - not a bad idea; will try anything at this point. [ more ]
Scott F I’ve sometimes had success getting my primary care doctor to call the specialist’s office directly to let them know that an urgent appointment is needed. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Can Visbiome be used as an enema?
O OscarThePouch
SteveG You first need to sort out if it is an anal fissure or cuffitis / pouchitis. When I had an anal fissure I believed for weeks that it was cuffitis because I couldn't locate the pain clear enough. If the pain is mainly during or after a BM and like a permanent burning then it is likely to be a fissure. There is usually no blood. Using a bidet or water jet should help to clean the fissure. Cuffitis on the other hand feels like a pressure pain that tells you to go to the toilet more often than... [ more ]
Scott F I’m sorry, Gina - I intended no judgment. You expressed financial concerns, and misunderstandings about ACA insurance are quite common. I was just trying to help, in the event that help might have been useful. I hope you find some relief. [ more ]
OscarThePouch Hi. Scott F thanks for your concern but I am insured and prepared financially for a child. (And this is not a thread wherein I was seeking pregnancy or financial advice.) Your words did come across a bit patronizing and judgey so I feel a little on the defensive now. The implication that I'm irresponsible would immediately seem hilarious if you knew me in real life. I am just stressed out. The way I type on the internet makes me sound like a petulant child but usually I only come onto these... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Unfamiliar complaints
KennyJG44KennyJG44
Sara Marie I also employ the laying down in the stomach to get the gas out. One time I had a thrombosed internal hemorrhoid that hurt like crazy. The pain also radiated out into my butt cheeks and it hurt to sit. I have had fissures that make these things painful too, but that thrombosis was the worst. I used aloe Vera to help heal the butt pain. It took a long time to heal. [ more ]
KennyJG44 I find it difficult to explain. I'd say, the is a dull ache/pressure that is always present. I feel that is at the bottom, but internal. It does but feel like an inflammation. During and immediately after BMs, that dull feeling is amplified to a much more throbbing like pain, both internally, as well as right at the anal opening (I think). It's such an obnoxious feeling, that is hard to pinpoint. Also at that time, it actually pains me to sit on the toilet. That feeling is more of an ache,... [ more ]
Scott F If you’ve been straining to empty for an extended period then it would almost be surprising if you didn’t have hemorrhoids. That being said, I can’t tell from your description exactly where the pain is. I’ve never seen a diagram with the “actual butt” labeled. It the pain external? Along the anal canal? Does it move or stay in one place? Does anything make it better (or worse)? Did it change when you passed that gas? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stomach ache almost always
EI Eric in Seattle
Jan Dollar Peppermint oil supplements help some. Worked for me for a while until it was clear it was chronic pouchitis. Jan [ more ]
Sara Marie Sure does! I got the Zot Organic Licorice Original Gluten Free Sugar Free. They are tiny little lozenges, and they're great! You can also get them with sugar and wheat if you think those things are OK for you. I try to stay away from sugar unless it's unprocessed (like honey, etc.) and I bloat up if I have wheat. But you might not have those issues! [ more ]
Eric in Seattle Liquid? Capsules? Amazon has everything. Of course there is good all fashion black licorice candy [ more ]
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J-Pouch ForumsHelp! Need advice now!
Age
BA Bill A
Doug K Hi Bill A, There are lots of tips about lowering frequency a lot. Anti Diarrhea meds, fiber, antibiotics, anti motility, and physical therapy. Taking the JPouch out is certainly a big move. Many people are successful at it, but it’s a big deal. I would try to improve the function to the best of my ability first. Best of luck - Doug [ more ]
Scott F Bill, I don’t know what this surgeon might or might not have observed, nor what sort of history you have with this person. I wonder, though, if this is one of those surgeons you should run like hell from. At the least it might be time to switch to a good gastroenterologist, who would recommend a consultation with a surgeon if the need arises. I don’t know what you’ve tried, if anything, to reduce your daily toilet trips, and you didn’t ask about that. We’re here if you could use some ideas. [ more ]
Bill A Thanks for replies. I did not know it was difficult operation. Surgeon simply argued at my age it was wiser. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Rectal pain
L Lscrabble554
Chopkins Lscrabble554 This sounds very much like cuffitis. I have had this a few times along with pouchitis. My doctor prescribed Proctol for the cuffitis and an antibiotic for the pouchitis. Hope you feel better! [ more ]
Andreita They had left my rectum in and I insisted it was a bad idea. He left it in disregarding my protests. I had a redo where they completely removed my rectum and reattached my still viable jpouch to the anal canal hand sewn [ more ]
lindaslankard I had J pouch in 2011. I have rectum pain almost 24/7. I have to sleep sitting up. Pain meds doesn’t help the pain when it’s the worst. It burns and spasms right up inside rectum. I cry and cry it hurts so bad. I Stan in shower and hold shower and run water on me to wash my rectum clean. This helps if I dry and go straight to bed and pray I don’t have to get up. I take cipro morning and night just to be able to endure this pain and life. Anyone else have these symptoms? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Help with hemorrhoid problem
D daviwyat
Kangaroo I find Ilex paste is the best to stop the itching and burning. Also, bath salts intended for hemorrhoid relief help a lot with the discomfort. [ more ]
New577 Just as a follow-up, I find two products to be helpful. 1. PrepH (or Walgreens/cvs brand) cooling gel. Straight up prep h is worthless for me. 2. Desitin brand cream. Highest level of zinc oxide and seems to work quickly. [ more ]
daviwyat Thanks [ more ]
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J-Pouch ForumsHelp! Need advice now!
In the hospital. Nothing is working
B Bandy
Frustrated Hi Brandy. Have you tried smooth orange metamucil with real sugar? I love it, turns liquid poop into thick soft tube poop. Only way i can describe lol. Take it with less water than it calls for, then it will absorb your food, stomach acid etc. Ive heard metamucil bars are good too, but i havent tried those yet. The key is to take it 2 to 3 times a day, and use immodium with it, then you might get some overall relief. I only take 1 to 3 immodium all day, usually 2, 1 in the morning and 1 at... [ more ]
Sara Marie Have you read "Listen to Your Gut" by Jini Patel? Totally great information on things to try when managing your condition if western meds haven't worked for you. [ more ]
Spollyk Hey Scott, I have a open prescription for Cipro and flagyl! It does not work for me and makes me sick and mentally violent . I take them and lock my bedroom door. I hate it and will not take it. When I was sick, the only medication that “helped” temporary was IV prednisone and I hate what that crap does to me too. I took Immoran for a short period and woke up behind the wheel in a farmers field , my body doesn’t do medication! So really , it’s not easy to manage at all. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Psychological or something else?
ValenValen
SteveG That 'unfelt' stress was part of a documentary I saw on TV some time ago. They had people living in a city and others living on the countryside have a simulated job interview and measured stress indicators. While both groups said from their own impression that they did not feel much stress during the interview, those from the countryside had significantly lower stress levels. That difference was blamed on bacteria of the bowel's microbioma which enabled people from the countryside (because... [ more ]
Valen @Mysticobra Yes! That ‘Unfelt’ stress is really obnoxious. I’m in therapy right now, which helps, but it’s definitely a work in progress. Is there anything in specific you did to find the root of your issue? Or ways to cope until you can? [ more ]
Mysticobra I agree with the stress speculation. Even when what I call "Unfelt" stress is present. Things like doing everyday things. Going to work. Just Unfelt stress. I know for a fact stress was a big factor with myself. I could go into it. But I won't. Well. A little. Once I got rid of my problem all the stress I felt there was gone. I cannot say it was for anyone else. Richard [ more ]
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J-Pouch ForumsHelp! Need advice now!
Nighttime Incontinece
BE Brad Epps
Frustrated I highly recommend combining metamucil and immodium. You need to slow down your intestines and use metamucil to help absorb the liquid and stomach acid. Experiment the right amount for you. I take 2 heaping teaspoons first thing in the morning with 1 immodium. I add 2 to 4 capsules of metamucil with everything i eat drink that isnt water. Immodium 1 hour before bed time and make sure you go to the bathroom a couple of times before bed. This should help. Also take a gax reducer like gasex. [ more ]
Maverick Plus Gas-x at night helps me. [ more ]
Mrs P Hi Brad, I am so sorry you’re having these issues. I have had the same problem in the past. It is awful. my GI Doc prescribed Xifaxin 3x daily for 28 days. It is expensive but there are manufacture coupons out there. That has helped. More recently I took Budesonide 9mg every morning for several months. That seemed to do the trick! I also take VSL #3 probiotic 2x daily and eat Metamucil wafers daily. As of right now ( knock on wood) I have not had a nighttime accident for a few months which... [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Bowel blockages and Doctors
BB Burning Brian
duck11 Oh I feel this, vent away. I was the “mystery bowel blockage” person too for two years of hell, back and fourth to the ER, unable to eat, etc. Doctors sometimes would say “maybe it’s a blockage”, and other times it was exactly what you got or being told it’s in your head, or worse, sometimes accused of being a drug addict. Anyway, long story, but after 2.5 years I accidentally found a surgeon with compassion who, only going in a hunch that my j pouch wasn’t functioning, operated and... [ more ]
Brigitte Go to a different hospital [ more ]
roseviolet Brian, does your insurance allow you to go to any hospital & doctor or are you locked into a medical group? If you can go to any hospital, go to UCSF emergency at Parnassus and they'll figure out what you need. If you're locked into one medical group (for example Sutter), you'll probably need some sort of authorization to go to UCSF or you'll get stuck with the bill. You need medical help now, as vomiting is serious and can bring on dehydration. -- Rose -- [ more ]
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J-Pouch ForumsHelp! Need advice now!
enterocutaneous fistula
M Momma
New577 10 days after my first takedown, my surgeon removed my staples. 6 hours later my undetected fistula started draining feculent matter thru the wound. thank god I went the ER where the CT scan revealed the fistula. (I knew something was up, because day after first takedown I could feel the flow of my intestine right under the wound. Surgeon ignored my concerns.) anyhow, I had emergency surgery and surgeon told me and my wife that I could wind up with a permanent ileo. The surgeon managed to... [ more ]
TONY LAVICTOIRE Thanks for your input Akteacher! It's hard to find info on the web and your experience is so valuable to those like me who are trying to navigate thru this. I agree, I definitely wouldn't risk losing the pouch over something that's not yet an impediment to my quality of life! [ more ]
akteacher I still have my fistula. I don’t let it stop me. I live by the ocean & go in frequently. I don’t cover it when swimming. Mine doesn’t ooze too often, so I only cover it with a folded tissue. I can’t handle the tape. I was not able to do the hyperbaric oxygen treatment as insurance did not deem it necessary (wish they had to live with it, let’s see what they would). Dr. Shen told me it would be denied & once they denied it his office would resubmit. However, Dr.Shen was in the process... [ more ]
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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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