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November 2022

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J-Pouch ForumsGeneral Discussion
Dehydration/headaches in the AM
B Bubba1028
Former Member ❤️
jan15 Louisa Have you tried coconut water? I’d be curious if its transit time, so to speak, through your system is slower than water. Dietitians, and a former G.I. doctor have suggested it to help combat dehydration because of better absorption. Many with IBD are lactose intolerant, which eliminates the milk option. do you drink herbal or caffeinated tea? Coffee usually clears a headache. dehydration is serious stuff. There are days I can’t drink water and other days when too much is not... [ more ]
Louisa Thanks Jan for your thoughts. I was in your comment on milk staying in your system longer than water. My problem is as soon as i drink water i need to turn and pee it out. Where as milk stays in my system longer. Maybe too when i stated in another msg that a cup of tea with plenty of milk tends to help my headaches. Thanks for your post Jan. [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Pouch twisting
J JulieT
AllyKat Thank you [ more ]
ceew https://www.j-pouch.org/topic/...0#704880547818120310 I’m glad they found out what the problem was and I hope it has been taken care of. [ more ]
AllyKat Turns out I had internal hernias one dated back from a defect from the original pouch surgery 23 years ago. I hope this is it. I hope you find your answers. It amazing that with modern ct scans, mri, scopes etc it can take years to find the issue. [ more ]
See all 20 replies...
J-Pouch ForumsHelp! Need advice now!
RV fistula again??
cbearcbear
chili123 I hope you feel better soon. I know the up and downs of this is hard [ more ]
cbear Hey hunni, I’m so very sorry you’re going through this too! I had surgery on the 9th to return to a loop ostomy. Does your surgeon favour a stoma to address the fistula? I found convex bags were a life saver with issues I was having with adhesion. Claire x [ more ]
Unhappy Hi Cbear hope you're doing fine. I identified myself with you since I have a rv fistula and I'm desperate because I'm scared and so afraid of being put a temporary ileostomy bag. Back then when I had the bag it was a nightmare. The bag never stuck to my skin regardless of different creams, bags etc. Waiting for your response. Take care [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Is pouch empty?
EI Eric in Seattle
Mary4130 Are you using lubricant? Enema or irrigation has been the best answer for me after stg 3 colon cancer! [ more ]
Mary4130 Re: Is pouch empty? [ more ]
New577 Hey Eric, it took about 8+ months before my pouch empties in one sitting. Before that time, it would constantly fake me out. i would clean up and then get the urge again. Nowadays, I take Imodium 3x/day to lessen butt burn. Sometimes, but not often, it will constipate me and I really have to sit along time to get things going. I like looser BMs, as they tend to clean out my anal canal and not leave stool and subsequent irritation in there. I am not a fiber person, but my surgeon did tell me... [ more ]
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
Severe gas and bloating--tummy ache
K KS
KS Thanks Steve. Let me check. Does colon cleanse/bowel cleanse thing work for us since we dont have colon? [ more ]
SteveG I thought of meal replacements like Ensure or Boost. Here in Germany I always used to have Fresubin Energy Drink (the high caloric version, the high protein drink was not the right thing for me). Such drinks did not help me to gain weight when I had them additionally to food. But when I stayed off solid food for some days I could at least keep my weight that way. I drink that kind of stuff very slowly, about 15 min. for a small bottle. About 5 or 6 bottles a day when I don't eat. Doing so I... [ more ]
KS ❤️
See all 13 replies...
J-Pouch ForumsGeneral Discussion
Constipation?
S Solomin
SeattleJane When I have that problem, and it happens from time to time, Miralax works for me. It's pretty gentle, but effective. This might not work for you, but I take about half than the prescribed amount of Miralax stirred into a glass of water. I also opt for a liquid diet when I am constipated - pho broth, jello, vegetable broth, water, herbal tea. That helps. [ more ]
Jaydog Just my own 2 cents but if I'm constipated I go in a 24 hour or longer water fast and drink tons of water. It seems to empty me out and kinda reset my system. Fasting is good for you anyways so it's a win win. [ more ]
Scott F Difficulty emptying a J-pouch usually isn’t due to constipation (when the stool becomes hard and difficult to pass). There are various causes and, correspondingly, various solutions. It would help to know how successful the dilation was, what part was dilated, and whether the doctor thinks it will need to be repeated. The pain might be from an anal fissure, especially if the pouch outlet was dilated too aggressively. For some of the more common pouch emptying problems MiraLax is recommended,... [ more ]
See all 3 replies...
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 ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Revert back to ileostomy
GEB56GEB56
GEB56 Hi Patti. Thank you so much for your response. I, too, am afraid of surgery. I almost died with the colectomy/creating Jpouch. I am thinking that when you got your Jpouch you were still quite young. I believe we all have some health issues and are just not as strong in our 60s. Perhaps that is part of why our Jpouches fail at this point. If you wish, I would love to hear how you are after your January surgery. I can tell you are an intelligent woman who did not come to your decision easily. [ more ]
Fight like a girl Hi Gail..I'm sorry to hear of your need to remove your jpouch. I too am in the same situation. Our stories match almost to a T ! I've been in pain past 12 yrs or so. I got my j pouch back in 1989...had u.c. for 10 yrs & back then I wasnt responding to the meds they had available. Long story..major complications but a great surgeon Dr Lavery at ccf in Ohio saved my life & j pouch. I was good for about 20 yrs. Then c diff, pouchitis, chronic pouch ulcers, etc,etc. I've been on numerous... [ more ]
GEB56 Dear Steve and n/a: I really appreciate your two different takes on the issue. As noted, I am not benefitting anymore (for at least 1 1/2 years from two antibiotics alternating at high doses after low dosage was not effective. Still no luck and worsening daily side effects; more BMs, nausea, loss of appetite, drowsy and a general feeling of unwellness. I think n/a, your thought of diversion is interesting and one I didn't think of. It would calm things down, and give me time to see if ostomy... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Diet/ Culinary solutions
A AMB
Sara Marie ❤️
PouchLogic Basically I eat meat, pasta and potatoes. I occasionally eat very small amounts of non green vegetables like carrots or some squash. I used the low fodmap diet to figure out my triggers. I also make sure to fully chew my food to reduce possible obstructions. Basically I need to stay away from spices, fibers and dairy. I also stay away from sugar but candy etc is my weakness. The best things for me seem to be taking Visbiome regularly and CBD oil in capsule form. I have been awake (not by... [ more ]
AMB @Former Member : Great article! Thank you for posting it. @PouchLogic : I introduce new things one at a time, and a small amount at a time. It doesn't always work out, but I keep trying. Sometimes it's hard to know if food causes grief or if my never-ending attempt to discontinue Cipro is causing it as I reduce the dose. Or a little of both. What foods work for you? You're absolutely right - there is such variation in our experiences, with history, surgical experience, food and meds,... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Can I crush slow released tablets?
FM Former Member
New577 It was hydrogen related. I actually cured it indirectly, because I was taking bactrim for recurring UTIs when I told my GI it was cured he was not surprised since his treatment preference is xifaxin, doxycycline and bactrim [ more ]
Former Member Interesting. Do you know what kind of SIBO you had? I have hydrogen sulfide (seems Staph. Aureus is the bacteria that has overgrown) and it is causing me a ton of problems. Don’t know if rifaximin works for it, but I think there are som other things I could try if I am not able to cure it now. [ more ]
New577 Yes, I read that this can help SIBO. when I had it, the GI wrote for xifaxin. So expensive, insurance would not cover. It was finally cured with bactrim. please let us know if this supplement works or does not. good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
long term diverting ileostomy - health implications?
S scallop
Karrine following. after 38 years I am considering diverting as well. [ more ]
scallop Thanks for tge feedgack. May I ask who and where your surgeon is? Did you excuse abd if so are you happy you did? best debbie [ more ]
Jaypea I was advised by my surgeon (whom I trust very much) that an unused rectal area (pouch/rectum) should be excised within 5 years of a permanent colostomy/ileostomy due to increased risk of cancer occurring there. Good luck with your decision. [ more ]
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J-Pouch ForumsGeneral Discussion
Mesalazine enema
E Enterin
Scott F Cuffitis behaves a lot like UC. It can wax and wane on its own, it can be chronically troublesome, and it can disappear for a long time. Mesalamine isn't generally a short-term treatment that makes cuffitis go away. It's usually a long-term treatment to keep cuffitis under (hopefully) good control. Bad cuffitis can be definitively treated with pouch advancement surgery, but that is generally reserved for when medication isn't working adequately. [ more ]
New577 Hard to say. since my reason for the colectomy was high grade dysplasia in the rectum, my GI and I have decided to treat my cuffitis aggressively. I have been on mesalamine for over a year and at least until my next scope. you definitely want this managed by a “knowledgeable” GI. [ more ]
Enterin You can find excellent doctors here. How long is the expected treatment of cuffitis with an enema? [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Doctors in NE Florida
fourgrubbsfourgrubbs
fourgrubbs Thank you so much for your replies. I moved to Florida in 2019, however I was living in NC and I saw a doctor who I loved there at UNC in Chapel Hill. Anyway, I just had a bad feeling about this doctor, and you're exactly right, having the right one who knows about J-pouch is the way to go. I have heard about the doctor at Mayo Clinic that you mentioned and I am trying to get an appointment with him. I am scheduled to have the pouch exam and an upper endoscopy on November 28th and I think... [ more ]
CTBarrister Yikes! I think if you have a J Pouch you really need to find someone who has very good experience with them. I know it's tough for some members who live in the boonies to find J Pouch experienced specialists, but you absolutely have to have one if you have a problematic pouch. [ more ]
ElizaB Hi, To avoid wasting your time, you might want to ask if the person you're scheduled to see has any experience with J-Pouch patients. When I went to Borland Groover a few years ago, the physician I saw was pleasant but had little to no knowledge of J-Pouch issues. When he told me "he had heard of it"... I knew I had to keep looking. I'm now with Dr. Farraye at the Mayo in Jacksonville. [ more ]
See all 3 replies...
J-Pouch ForumsPouchitis
Xifaxan
J JBS
JBS Thanks for the responses. Fortunately, my insurance still covers it and I was able to get a refill using the 550mg pills. I hope that generic gets approved or there is an alternative some time soon. [ more ]
New577 AMB thanks for the tip. My GI doc wrote it once for SIBO, but it was denied by insurance. I doubt it will be covered by my Medicare drug plan should I ever need it again. [ more ]
AMB I've ordered Rifaxamin from a Canadian pharmacy, which supplies from UK, India or elsewhere either brand or generic. I went in that direction when insurance stopped covering, since the drug was crazily expensive if ordered domestically. A Canadian pharmacy might be a stop-gap measure for you. I use this place, based on another post from this site. Has worked well. http://canadianpharmacyking.com/ [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
2nd year post takedown
C Chook2
Sonofx ❤️
Former Member Just chop your veggies in small pieces, throw away the hard fibrous parts, and then cook them very well. They will get very soft, and become easy to digest. For example, I buy those bags of crunchy salads that people eat raw, with cabbage, brussel sprouts etc, which are usually chopped into very small pieces, add some water and slow cook those salads until they are very soft and eat them with the salad toppings. Healthy people eat them as salads, I eat them as well cooked vegetable dishes. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Sharp pains right side under ribs
MiguelitoMiguelito
Pouchomarx i would check liver labs. PSC is a rare liver disease where it affects your bile ducts. Its more common in people with UC. I have some bile ducts that are dilated in my liver but with PSC it usually is dilations as well as strictures. My doc just said yeah we are more suseptible to this disease but only if my liver labs go sky high he would look into other imaging on liver to see. past few years my liver labs have been ok but its always in the back of my mind... [ more ]
Jaypea I'm thinking more diaphragmatic irritation or intercostal involvement than abdominal. I wonder if there is scar tissue around your vagus nerve or some of the diaphragmatic muscles causing irritation? This would account for the pain with respiration. [ more ]
SteveG Did you have your liver's blood levels done to check for hepatitis? [ more ]
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J-Pouch ForumsGeneral Discussion
Can we digest tablets?
FM Former Member
New577 I think everyone is different and you have to experiment to see what works and what does not, extended release tablets are a disaster for my jpouch function. even b12 tablets ( not extended release) causes gi distress so I switched to sublingual. what I am trying to say is that your body will tell you what works and what does not. I did not listen to my body early on and suffered a great deal. No doctor had any idea either that medicine was the major cause of my poor jpouch function early on. [ more ]
SteveG One example is budesonide (e.g. Entocort) which is designed for delayed release in the terminal ileum (and in the ascending colon for people with a colon / MC). For me there are usually no problems with efficacy, except when I have really bad diarrhea. [ more ]
Scott F I’ve done some experimentation with extended release medications, and most of them seem to work just fine for me. I think they may fail for folks with rapid transit times, and I’d probably avoid formulations designed to target the ileum (or of course the colon). This is tricky since that information can be hard to find. Hopefully the prescribing doctor will know, and a quick conversation can help. [ more ]
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J-Pouch ForumsGeneral Discussion
Anti anxiety meds with jpouch
I Idifmb
lclassen I was on Klonipine (clonazepam) for several years for anxiety. I didn't notice any changes with my Jpouch. It's in a different class than SSRI's. I have also taken several other depression meds with no effect... Currently on Lamotrigine, Trintellix, and Trazodone and all seems to be working just fine. Hope you are able to find something that works for you 😊 [ more ]
Jaypea I have used quetiapine for years both pre and post pouch. I have managed to drastically reduce my dose but can't quite do without it...yet. You have made me wonder if I came off it all together would I have more control over my pouch at night? I can't do that just yet as I rely on the quetiapine to function on a daily basis but it is food for thought. [ more ]
rnj2010 I haven't looked up the side effects of the med you are on but I know some antidepressants (even in the same category, say ssri's) can cause increased motility while others the opposite. So, you can work with your doc to find the right one if you feel the prescription option is best for you. Have you had your B12 and other B levels checked? [ more ]
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J-Pouch ForumsGeneral Discussion
New Jpouch-er
S snash1108
Former Member ❤️
Rudy Thanks, roseviolet. That’s why I kept harping on the cotton ball. I know it might not help everyone, but it might make a huge difference to one person. I know it has for me for the 41 years I’ve had my J pouch. 😊 [ more ]
roseviolet Rudy, there is no such thing as a weird tip on this website. Thank you for your contribution. You never know what will help someone. --Rose-- [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
Pain/Uncomfortable in the Morning
K KOB
PouchLogic I don't know if it's the same but I always get uncomfortable in the morning after waking up. It's not pain but discomfort and doesn't allow me to sleep in unless I get up and have even a tiny bm. The morning seems to be worst, during the day that amount of discomfort wouldn't really bother me. [ more ]
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J-Pouch ForumsGeneral Discussion
Positive For Covid and Remicade Infusion Cancelled
CTBarristerCTBarrister
RossG Chiming in here.... I've been on Remicade since 2015 and have been very careful re Covid, living like a hermit mostly, not easy on the marriage. Finally got Covid 3 weeks ago after a trip. Had a rough 5 days with but it never got into my lungs and my oxygen saturation levels never fell below normal range. Headache, body aches, loss of smell and night sweats for two weeks. I'm over it now after 4 weeks, but lost 10 pounds, mostly I think because food is not very appealing when your sense of... [ more ]
CTBarrister Still Standing, Thanks for your post. I am also glad that I do not have Covid and didn't have to call my PCP to get an Rx for Paxlovid. In 7 years of getting Remicade infusions I only had an infusion delayed once- in April 2019 I developed viral pneumonia, which was diagnosed on an x ray showing fluid in my lungs. My GI doctor said I had to be at least a week without symptoms before they would put me back on schedule. I also had to get a second x ray showing the pneumonia was gone. I think I... [ more ]
Still Standing While I'm not happy with the false positive COVID results and all the confusion that caused, I am very thankful you don't have COVID and that your infusion of Remicade could be put back on schedule. What a crazy world we live in [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Second time around
cbearcbear
Sara Marie ❤️
Johnny J-pouch J-pouch in 2014, roughly 8 years with a well functioning pouch. I think it’s been almost 2 years since I commented or reviewed topics on this site. I find it therapeutic and should review it routinely to reinforce the fact that other people battle these same issues on a daily basis. I have been battling rectal fistula for this past 2-year period; 13 separate surgeries and 4 separate Setons installed; this latest 13th, two weeks ago was a second attempt with an advancement flap to seal up the... [ more ]
Kushami ❤️
See 1 reply...
J-Pouch ForumsGeneral Discussion
Stricture?
J joebucket20x6
joebucket20x6 Scott, the Miralax was a great idea. A full dose last night softened things up enough to allow for a pretty comfortable bowel movement. I’ll spend the next couple of days trying to find a dose that I can use for consistent relief without overdoing it. I appreciate the suggestions. [ more ]
joebucket20x6 Scott, thanks so much for your response. Well, I have 100% aggravated some hemorrhoids. It’s not too bad, but it is definitely noticeable. If that is the culprit, I’m in a very viscous cycle. I try hard not to strain when I empty my pouch, but sometimes I cannot help it. I am generally waiting until I have a full pouch to empty it, but I have admittedly been fooled by gas lately (which was blissfully nowhere to be heard/smelled while I was on the antibiotics). So, I am still relearning a few... [ more ]
Scott F This isn't a reported side effect from Entyvio. It's possible that your stool got too firm to easily pass, without any structural problem like a stricture, though the problem apparently persisted when things loosened up a bit. Perhaps your attempts to empty have swollen some hemorrhoids, which could add some difficulty in emptying. Things you could consider doing (don't do them all at once): Stop any bowel slowers (Imodium/Lomotil/opiates) Add more fluid, especially if your urine is dark. [ more ]
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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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