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December 2022

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J-Pouch ForumsOstomy & Skin
Pain at former stoma site
T TCM
Former Member I still get pain at my former stoma site as well. I think its the scar tissue. [ more ]
James112002 I have had my pouch since 2001. Intermittently have had discomfort at the old stoma site, but nothing significant, always went away Currently, it is happening more frequently and the discomfort is more pronounced. Feels like stool getting stuck in that area (I am guessing) Would love to kmow if anyone else could speak to this. Thanks! [ more ]
TCM Thank you. That helps. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Back to Back
C capper
capper I seemed to catch a bug or virus of sorts that has caused the chills, muscle aches, and a bad headache. The headache is gone now but the others symptoms are still lingering some. I have tried to rest and get as much sleep as possible over the last couple of days. In order to help with that, I have taken some muscle relaxants that I had been prescribed previously. It has a tendency to really knock me out. Typically, the longer I sleep, the better I feel but the more difficulty I have with my... [ more ]
CTBarrister Your MRI report doesn't look normal to me especially at the L3-4 level. But I am not a doctor. It's your call but I would go to hospital, get the Toridol shot, and request a referral to a neurosurgeon. Wait if you can take the pain. Do not wait if you can't. See a neurosurgeon one way or the other. Good luck. [ more ]
Sara Marie Arnica & CBD icy hot spray or cream and a hot pad is what I might try. Someone might say ice is good for something like this. I'd do whatever feels better to you. Maybe those treatments paired with some acetaminophen? Most people on this forum (and their doctors) seem to agree that NSAIDs can trigger bad responses from the pouch. After the pain decreases, Iyengar yoga might help if you can find a good, experienced teacher. I can't vouch for other types of yoga. If the pain is too bad,... [ more ]
See all 14 replies...
J-Pouch ForumsHelp! Need advice now!
Gall bladder removal/sternum pain/ pouchitis
Q qdm
qdm Karrine, do you also feel the only way to manage the pain and diarrhea is to be on cipro. I can’t figure it out. It seems the cipro definitely does something in my system that helps. But, I don’t want to stay on it forever. I get really an intense pain and burning in my stomach in the night also. Have you experienced this? [ more ]
Karrine I am going through the same issues. I had my reversal 24 years ago. 6 years ago I had my gall bladder removed and have been on acidic blockers but they don’t work anymore. It is like having an ongoing gall bladder attack - every night for three months. I have a couple of other medical issues that I need to work through but figuring out how to overcome these new challenges the gall bladder removal have caused is high on my list. [ more ]
Scott F Yes, that’s a lot of acid blocking. If you’re having breakthrough pain (which is what it sounds like to me), then it could be a few things. You might need to try a different acid blocker (i.e. they aren’t working any more), you might have gastritis or esophagitis or an ulcer, or one or two other things. I was in a similar situation earlier this year and I chose to have an upper GI endoscopy, mainly to ensure that my years of reflux hadn’t caused a Barrett’s esophagus, which presents a cancer... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Pain around old stoma site 1 year after j-pouch takedown
FM Former Member
Kushami Regarding mild pain at the old stoma site – I had that for many years after takedown. I believe it is not uncommon for us to have mild pain there. Can’t comment on the hernia aspect. I seem to remember reading that hernias are sometimes porrly understood, so if you are still concerned you might want to track down a hernia expert. [ more ]
Former Member I have had two doctors feel the area and say it’s not a hernia, but idk. Hopefully just scar tissue [ more ]
SteveG Have you shown that bulging out to your doctor? That really sounds like a hernia. Though a hernia does not need to be associated with pain. Mine is unremarkable for 5 years now, it is above the belly button and it bulges out when a pressure builds up inside. For example when doing a movement as you described. But that mild pain may also be related to scar tissue, as your doctor suspected. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Partial Blockage
GaylaGayla
AllyKat Never had resection. Diagnosis floppy bowel now in question? It is a real pouch problem though. The first twist and internal hernia were a separate issue that are holding. this is new issue found. I had a internal hernia with bowel looped around pouch from a menestry (spelling?) defect from original surgery 23 years ago. I mean 23 years, really? And not one test showed this and I’ve had many! [ more ]
Stolemycolon This happened to me a year after I had my take down. It started as a sharp pain in my left groin and then I couldn’t stop throwing up. I went to ER, the scanned me and I went into emergency surgery to correct my twisted small intestine. My surgeon told me that had a come. Even a day later I would’ve lost my couch because the tissue was dying. It had turned black. Luckily it was a successful surgery. I’ve had about two blocks since, one of which was found and I didn’t know because I didn’t... [ more ]
Gayla ❤️
See all 9 replies...
J-Pouch ForumsGeneral Discussion
VSL 3
D DJJ2019
Sara Marie Do you think that if you did take it you'd never get pouchitis? I don't know if I've ever gotten what people call pouchitis, but I know I have inflammation and it's systemic and definitely there is low level inflammation in the pouch often. I'm curious about your habits anyway, being a patient of Dr. Shen. I wonder if you have picked up any other tips from him? [ more ]
Pouchomarx believe what you want, I am going to side with Dr Shen who has done the greatest amount of research on jpouches in the world. Not to mention he is the only GI in the world that has pioneered several scope procedures of the pouch to try to avoid surgery and fix many complex issues of the pouch. needle knife therapy and banding procedure for floppy pouch and prolapses just to name 2 [ more ]
lclassen ❤️
See all 18 replies...
J-Pouch ForumsK-Pouch Korner
Flex Sig with K-Pouch?
marriedguymarriedguy
jan15 like sharon I don't get anesthesia for my scopes. one reason is needing to be picked up by somebody, which doesn't work for me as not in my home town. but biggest reason is I want to see pouch lining condition, and be able to communicate with doctor during/after procedure. this is especially helpful if there is a problem. jan [ more ]
marz I go to dr Shen yearly for my scope. He uses miralax for prep, 2-4 ounces is always enough. He also started me on entivyo for pouchitis and it is still working after 2 1/2 years.(local dr does orders for this) most local GIs know Shen is the expert!! Previously I was on the rotating antibiotics and ended up with c diff. I wonder if Dr Shen still does video visits?? He said he really enjoyed doing them during Covid. Maybe you could get another opinion from him?? good luck. [ more ]
skn69 I only get scopes as needed usually for a pouch twist, a valve problem or leakage (normally due to my pouch falling off of the wall). I stick to a light meal 24hrs prior to the scope and no fibers. I switch to clear fluids after 6pm. That is it for the prep! No bowel prep, no magnesium whatever. As for the scopes, I have never had any anesthesia since I've had my K pouch. I watch, comment, direct traffic so to speak. They use a simple child's scope so as not to injure my pouch and usually... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
New Member
LR Lili R
New577 I think you are in good hands. if they are performing techniques like chromo, etc they are on the cutting edge. while we cannot predict the future, being with the right care team will help mitigate nasty surprises. you will have plenty of time to worry about surgical decisions when the time comes. In the meantime: Dont worry, be happy!! [ more ]
Lili R Great advice! I feel like I have been given a wake up call. I plan to take better care of myself and keep my stress levels down. At the same time my I’m prepared for the possible eventualities. [ more ]
New577 Hey Lili, glad to read you are taking your time with this. the first time high grade dysplasia showed up in my rectum, the GI doctor freaked out and basically fired me and referred me out to an expert (my current) GI. New guy repeated the colonoscopy and the HGD was gone. We did not talk about colectomy again for 4 years until lesions stated appearing. these things can take a long time to manifest, so caution and prudence are in order, which gives you additional time to evaluate your options... [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Stool Colors
ValenValen
Winterberry For me, it depends on what I’ve eaten. Pasta, potatoes, fish, chicken or rice makes light colors, beets come out raspberry colored (so don’t be alarmed). When it is darker colored then I’ve eaten meat. I also see green when I’ve had lots of green vegetables. This morning I ate a blueberry muffin and by lunchtime I saw fully formed blueberries! [ more ]
Sara Marie Beets cause alarming or pretty poops, depending on how you look at it. I used to notice that the lighter colors were more evil, but now that I have psyllium and oatmeal every morning, I no longer associate light colors with burning. It's that sticky, syrupy texture that is most associated with burning for me (and that can definitely be light colored). Oatmeal and psyllium help make clean poops that don't require a lot of wiping, and oatmeal poops are light colored, but not burning. [ more ]
Jaypea Mine is totally related to what I have ingested and how long it took to transit. Anything tomato and someone else would think I was bleeding to death. Mine rarely gets to the dark brown stage as I follow a very low carb/sugar diet and have a rapid transit. [ more ]
See all 4 replies...
J-Pouch ForumsFAP Forum
Whipple surgery at 30 years question
BorislavBorislav
Len78 No I didn’t drink anything . Lol borislav. my doudenom was just clean of polyps I have polyps carpeted in the stomach though. Diets don’t reverse fap its inherited a defect occurs in chromosome number 5 .. a mutation and error in the genetic code causes the illness to manifest. len [ more ]
Borislav What did you drink to make your duodenal polyps go away after you gave up whipple surgery or did your duodenal polyps go away on their own just by dieting [ more ]
Borislav Why cannot remove only duodenum not other parts.. Is have surgery to remove only duodenum? [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Physical Activity
B BK 123
Former Member ❤️
Daleer I've had a j-pouch since 2006. I regularly lift extremely heavy weights at the gym with maximal effort and have competed in weightlifting competitions since getting my j-pouch. I'm sure it depends on the construction of your j-pouch, but for me the j-pouch has never been an issue or hindered me from maximal effort exertion even to the point of bursting blood vessels in my eyes. [ more ]
BK 123 Thanks all. I got the clearance from my surgeon to ski and get back to playing soccer. Hoping you all have a happy holiday and New Year! [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Having issues with pain and not going very much
KelliKelli
Maverick Plus I hope you've seen a doctor by now. Has this issue been resolved yet? [ more ]
Gayla From my experiences with full blown obstructions and partial obstructions, it sounds like that is what is going to me too. I’m no dr though. I hope you are feeling much better now and that it passed on its own. [ more ]
AMB @Kelli , Hope you're already feeling better! If not, maybe time to check in with your doctor. Are you nauseous? Sounds like your abdomen feels distended? Have you experienced an obstruction in the past? The pain and tightness you describe reminds me of partial obstruction. if partial obstruction is suspected, Doctor might suggest clear liquids - plenty of it - for a week if you can stand it and then regular liquids. When I had a partial obstruction that didn't clear for several days my GI... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Entyvio, antibiotics, infections
ehbraunehbraun
ehbraun Hmmmm. My rheumatologist mentioned that years ago, research about joint inflammation was indicating that antibiotics might be a good path to explore. It was more or less abandoned. [ more ]
Scott F Xifaxan will generally have fewer side effects than other antibiotics (except for financial side effects), but searching for an effective antibiotic can sometimes preclude being choosy. Your GI sounds systematic, which is a very good thing. I wouldn’t expect antibiotics to help much with joint pain, but perhaps they do more than I know. I wish they made my hands feel better, and I’m on two different ones. Psyllium fiber might help regulate your stool consistency - it tends toward a... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Having trouble going
KelliKelli
AllyKat Dealing with this now. I have floppy pouch sydrome that’s messing with my intestines. while you probably don’t have this you might be dealing with part blockage or twist. Especially since you mentioned pain. I would see my surgeon asap. [ more ]
PouchLogic Agree with Scott. You may also need more fiber. Has your diet changed? I find winter time hard to get my water in. [ more ]
Scott F If you’re getting pebbles of stool then you may not be drinking enough water. If that doesn’t help you might get benefit from a bit of MiraLax to get things moving properly again. I hope you feel better soon! [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Anyone tried Xifaxin/Rifaximin and can we absorb the tablets?
FM Former Member
Former Member Interesting. I don’t have inflammation in my jpouch luckily atm, I am using it to treat SIBO. Will give it a go [ more ]
AllyKat This was the best mediation for my pouch. I took it for years. Unfortunately I had trush, my dr took me off, I then had the flare from hell and never recovered on it again. Personally, after this I can to my own personal belief that antibiotics just mess up your new system. [ more ]
Mrs P Hi, I have taken Xifaxin with no problem and had success with it. My Doc gave me a coupon to cover the copay. It can be expensive. Good luck to you! [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Celiac Plexus block
N NurseKaren
Jaypea The celiac plexus innervates the nerves to the intestine and stomach (amongst other things). If the pain is not originating from these areas and has its origin in the venous insufficiency or circulatory problems then the block won't help. I would be concerned that with the intestinal issues you have had that blocking nerve signals from the intestine, stomach, gall bladder and pancreas might cause more problems than solve. I would want a thorough investigation on the cause of the pain rather... [ more ]
NurseKaren ❤️
Scott F One question I’d ask is whether the effects (and the side effects!) are temporary or permanent. My risk assessment would be very different depending on the answer. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Pouch Surgery
H hpinder67
New577 Hi, I had a hematoma near my takedown after my emergency redo (caused by a fistula). Along with a major UTI, they chose to see if the hematoma would resolve itself, rather then intervention. it did resolve after about 8 weeks on its own. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
going and then not
EI Eric in Seattle
Eric in Seattle Thank you all. [ more ]
PouchLogic Do you continue drinking after you eat? I try to eat as early as possible, then I minimize liquid intake at 7pm, if I stay up until 11ish and have a bm I can often make it until 7 the next morning. I stopped taking imodium as it was problematic for me. [ more ]
Scott F I take psyllium fiber with breakfast and dinner. The dose that woks best for me is the same as what the package label suggests, with a full 8 ounces of water. Some people do better with a smaller dose. Some people take it with less water, but if you’re feeling blocked up I wouldn’t suggest trying that. The simplest thing to try if you’re getting stopped up is to increase water intake throughout the day. That won’t fix every problem, but it fixes some. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Unused supplies
KG Kelly G.
Bubba1028 My surgeon took them took, since they given them out as samples to their patients before the patients order supplies (to test them out). See if they’ll take them. [ more ]
roseviolet There's an organization called Friends of Ostomates Worldwide (FOW for short). You can mail your supplies to that organization and get a tax write-off. [ more ]
dlewicki I heard homeless shelters would maybe have a need for them. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Anyone used Devrom for gas and bloating?
FM Former Member
Former Member Thanks! [ more ]
EF I use a generic chewable from Target. Their Up&Up brand it has simethicone as its base. Hopefully that will help you!! I have been trying to keep all meds to pill or chewable (non gummy). I don’t have a stomach so it certainly helps in absorption. [ more ]
See all 2 replies...
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 ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Viome
K KS
KS Thanks Scott. I was hoping for them to tell me dietary wise, what i can digest etc. Food diary and all is not really helping. I havent had a day wthout tummy ache is past 8+ weeks [ more ]
Scott F If their recommendations have any decent science behind them at all they’ll nevertheless presume a colon is present. What sort of results are you hoping for? [ more ]
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J-Pouch ForumsGeneral Discussion
Amitriptyline-milligram?
Y ytcrockpot
Scott F The dosing of amitriptyline varies a *lot* depending on what’s being treated. The range (after a gradual start) for depression is generally 50-150 mg per day, up to a maximum of 300 mg per day. For other purposes (migraines, fibromyalgia, neuropathic pain, etc.) the recommended dosing varies. [ more ]
Jfill21 25 mg at bedtime [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Open surgery for high grade obtruction with Intussusception
G girlunky
Carwyn ❤️
girlunky Thanks Scott and Jan. It is hard for me to be patient after a lifetime of pushing myself. Guess the laparoscopic surgeries spoiled me. [ more ]
Jan Dollar I am with Scott on this one. Give yourself a couple of months (at least), and don’t concern yourself about how it all looks. It can be ugly for a good while. Generally, there will be gradual healing. Keep in mind that there is a lot of healing that has to happen below the skin too. Be kind to yourself and be as active as you can, and rest as much as you feel the need. But, do be on the lookout for signs of infection, like increasing redness and tenderness at the incision. Also, fever and... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Can we digest Pepto Bismol in tablet form?
FM Former Member
Jan Dollar Personally, I prefer the caplets over the liquid or chewables. This is mostly because I don’t like the taste and don’t want to risk a black tongue. If I was taking it for upset stomach/nausea, I might opt for the liquid or chewable to get a faster release. But for reduction of small bowel bacteria. There isn’t the need for release in the stomach before it gets to the small bowel. Jan [ more ]
Scott F You can edit a post. Click on the gear icon at the lower right-hand corner and you should see the option when it’s your post. [ more ]
jrws P.S. That should read above "...can't verify" whether it really helps or not. (Is there a way to edit a post after we post?) [ more ]
See all 15 replies...
J-Pouch ForumsGeneral Discussion
Pouch operation
H hpinder67
cbear I’m sorry you’re struggling! I know some (like me) have issues with anaesthetic making the intestines overly sleepy and slow to waking up. I remember during that step I had a longer stay because of this and was vomiting a lot of bile. Once you are able to walk more it should help your recovery. I think it feels so much worse when you’re in hospital, hopefully you get to go home soon and progress with your recovery. Wishing you all the best x [ more ]
Scott F I was in for what felt like the longest 10 days of my life. Now I can barely remember the misery and despair. [ more ]
New577 Hello, I certainly can relate to your situation. I had complications (fistula requiring life saving emergency surgery), and poor pouch function for the first 6 months of its existence. I spent a total of 40 days in the hospital in 2021. The feeling of helplessness and the tears I shed were overwhelming at the time. I will tell you what others told me at the time. It is very early in the process and your story is not yet written. Our bodies have an incredible capacity for healing. Mine did... [ 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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