J-Pouch ForumsHelp! Need advice now!
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J-Pouch ForumsHelp! Need advice now!
From what I know, a fissure just like a small cut. I've only recently discovered that I've got a few that explains a lot of my issues, but never noticed them before because I've never been one to look.. until fistulas came my way, now I have to check regularly. I've always had episodes where I would still bleed on the loo, and I struggle a lot with 'butt burn' (10yrs post op).. I always just assumed it was normal, my pouch nurse has never been concerned about it, and it came and went enough... [ more ]
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J-Pouch ForumsGeneral Discussion
You can get one for Visbiome but you don't need one unless you want double strength. The only way I can get it is directly from Visbiome. Vsl3 is still unavailable directly in Canada right now, I don't know what is going on with that lawsuit. It's still about 100$ for 30 packets. Hope this helps [ more ]
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J-Pouch ForumsGeneral Discussion
Yh makes sense, pretty much what i am trying to do at the moment. Veggies can cause a lot of gas. Iv just started on protein shakes (whey) to put some weight and muscle back on, hoping that doesn’t disturb anything either. [ more ]
Couple years now. Part of the process is you learn how what and when you eat impacts your schedule, and you just start managing better. Say eat vegetables at midday, less at supper. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Yes, I had that. Usually once or twice a day. [ more ]
Mucus discharge is normal after the pouch is constructed, before it is attached. an ostomy nurse mentioned this to me while I was in the hospital. I was glad she did, because otherwise when it started, a few weeks after the surgery for me, it would have been quite a surprise. I understand that the mucus is generated by the mucosa in the rectum; it's not coming from the pouch itself. I'd guess that amount varies from person to person - as does much else with this new anatomy. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
I was on Methotrexate and a few years ago went cold Turkey off of it due to it elevating my liver chemistries. There was no wean, I went right off, was taking 12.5 mg per week [ more ]
When I became steroid dependent, I was given Methotrexate, then weaned off Methotrexate. This wasn’t because of my j-pouch, but my asthma. Ask your doctor. [ more ]
Well I ended up learning that anyway I slice it the $636.94 was going against my deductible. I have a $5600 deductible plan, and it sounds like ConnectiCare may have messed up in processing my Remicade claim. In any event they told me if I overpay on the deductible or payments aren't taken into consideration and are credited later I get reimbursed. Once that became clear I also realized that if the medication is overpriced, it doesn't matter, because if I have to pay out of pocket $636.94... [ more ]
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J-Pouch ForumsOstomy & Skin
I’m assuming from what I’ve read that it varies depending on the person. I’m 5 weeks out from my takedown as of tomorrow and my stool has been anywhere from very soft but formed to mashed potato-ish. Depending on what I eat/time of day. Metamucil has helped form things up and can help expand the pouch but it won’t necessarily slow down activity like Imodium would. [ more ]
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J-Pouch ForumsGeneral Discussion
I use psyllium and I actually halved my dose because I think it was making things worse. Thanks for your suggestion but I'm actually looking for information from people who have been on kadcyla and have a pouch. [ more ]
One thing to try (if you aren’t already) would be psyllium. In my experience it tends to even out the stool consistency, which might solve or improve your diarrhea/stopped up oscillations. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
It happens and it's maybe a bacteria in food you have eaten, rather than the food itself. In other words, its food poisoning. And it's common whether you have a J pouch or not. I remember when I ate a prepared antipasto salad I bought at a supermarket salad bar one time and it made me so sick and dehydrated that I actually passed out and found myself on the kitchen floor. It took me around 10 days to 2 weeks to recover. There was nothing individually in that salad I couldn't handle. What I... [ more ]
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J-Pouch ForumsPouchitis
I never had blood with Pouchitis and would not consider it indicative of pouchitis. [ more ]
Blood isn’t usually a prominent feature of pouchitis. It’s worth a call to your surgeon if it persists, but it really is still early days, and plenty of adjustment will be going on for a while. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsHelp! Need advice now!
Alot of people at my work have drink bottles and alot of the older men use the urinal as many times I use the toilet.Your employer would rather you use the bathroom than have to call in professional cleaners and close the store if you have an accident .and many employers have friends or family with the same health problems so they understand.I had a boss who's wife had Crohn's and another boss who's son had stomach cancer and another boss who's wife had the bag. [ more ]
Don't worry about taking water and bathroom breaks. Do what you need to stay healthy. It may be inconvenient, but honestly, it would be very unusual for an employer to cause trouble over this considering your situation. Also, when I am busy at work, I seem to go less often. But everyone is different. Best of luck and congrats on the job. It will be great. [ more ]
Yes, Scott is right, go every chance you get. And try to pace your drinking rather than a large amount at once. Plus wear a pad (like poise) in case you don't make it. [ more ]
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J-Pouch ForumsPouchitis
Thanks all for alerting me to that profile setting. I've corrected it. Please message me privately with an email address and I'll happily send the PDF to you directly. [ more ]
@AMB I too would appreciate receiving this article. You can PM me also. Like the others I’m not able to PM you directly due to your profile settings. Thanks so much for bringing this to our attention! 🙏🏼 [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
I'm just saying what helped me but I'm still not great but I forced myself to go back to work mainly as my funds had run out.and my first day was terrible,like my anus was on fire and my butt crack was sweating through my shorts and I used the toilet about 6 times.and I had left my creams at home.but the next day was better and things are better if I don't eat too much the night before.and I live within walking distance of some shops so I would walk up to them and it hurt and felt like I was... [ more ]
I will be happy to help. My signature says it all. What works for me as I continue my daily quest to have a well functioning pouch. my thought is this. I am alive. I do not have a bag. I will never get colon cancer. Those thoughts keep me going every day! [ more ]
Hi. You are at a very early stage post--surgery, and so it's not surprising you're not feeling super-great. It does take time for your body to adjust and for you to adjust to a different way of bowel functioning. I think the most important thing is to relax and go with the flow (no pun intended). I had my surgery following a severe colitis flare after which the doctor did a colonoscopy and found low-grade displasia. (I had had ulcerative colitis since junior high school.) I had the j-pouch... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thank you so much! So interesting and now I finally understand. I really appreciate you explaining it in a way I could understand. 😊 [ more ]
Serotonin is produced by Enterochromaffin cells (EC), among other cell types, in the gut including in your small intestine. Bacteria don’t make the serotonin in your gut though the interaction between microbes and the ECs are important to their function. ECs can be stimulated to produce serotonin by a number of signals like mechanical stress, microbes, the content of your meal (e.g glucose). The serotonin produced acts locally in your enteric (gut) nervous system to regulate peristalsis,... [ more ]
Yeah the human can adapt to anything, that is what makes us different from trees. [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks brother. Yea I’m a huge fan of telling people after these surgeries to do dead bugs. I think it’s such a perfect functional core exercise that really helps to get things moving. [ more ]
Nice one, mate. You know the drill then haha. Yeah, plenty of athletes have had j pouch surgery, you just don’t hear of it unless you search it because nobody wants to talk about bowels or poo! Happy training 👍💪 [ more ]
Thanks man! Yea I have bidets in the house and I have the green light from the surgeon to train. Back in the day I was a strength and conditioning Coach so thankfully I’m able to program my own training. Keeping it reasonable. I have heard others on this site talk about never going over 25 pounds. My surgeon and her entire practice said that’s not real and they’ve actually performed j pouches on two guys who are as gift in the nfl. Just no heavy deadlifting. [ more ]
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J-Pouch ForumsGeneral Discussion
Did you ever find something that worked? [ more ]
Proshield Plus works for me. I buy it by the case on Amazon. Wipes irritate me so I use a Proshield Plus spray. When things are really bad, I use Critic Aid. It is also available on Amazon. It is goopy and gross, but works well. Good luck. [ more ]
@Pouchomarx - I've posted about this a number of times so apologies if it's a repeat to you. Like you, I was at the end of my rope with skin problems down under. I had massive problems with this and it got worse and worse over the years. I thought I had tried everything (although I doubt that now, after seeing your list). I saw docs ranging from my internist, two different GI docs and two different dermatologists. The last dermatologist I saw (she had a waiting list of 10 months but came... [ more ]
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J-Pouch ForumsHelp! Need advice now!
There's a Convatec Orabase protective paste that I've used on my peristomal skin, which does stick to raw areas. (I tried to add the Amazon link, but doesn't seem to work: search Amazon for "orabase protective paste".) There's no ingredient list on my box - it states that it's a "smooth, ointment-like paste that adheres to moist areas..." It may be worth checking out for your purpose. I now have a fluid pocket of some sort as a probable result from jpouch removal surgery, and have a similar... [ more ]
Thanks Scott. Thats the type of product I'm looking for although I definitely don't need a steroid in it. I will investigate further. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Sorry to hear about that but congratulations on your surgery coming up!!!! I am so excited for you!!! Let me know how it goes!!! If you have any questions about the process, hit me up [ more ]
Got it, thank you for your input Scott. I really appreciate it! [ more ]
A CT scan would probably not be informative. Since you have surgery coming up anyway you could ask the surgeon if it’s possible to take a look and lyse any adhesions in the area that’s giving you symptoms. They will generally not do surgery just for that purpose unless the symptoms are disabling. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Glad your okay!!! I hear soda helps with blockages. In the future on how to prevent blockages: drink water before, during, and after every meal. Walk around after meals, and chew chew chew your food very thoroughly. I have had my pouch for 7 years and no blockages, Hope this helps love [ more ]
Update: the team think this could just be normal post op stuff and my body adjusting to the new normal. Up until now I hadn’t had any issues so it was more surprising than anything. 1 day at a time I suppose when it comes to people in our situation! [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Really happy to hear that, just be careful hon. Dr. Bo Shen recommends nothing over 25 pounds so just be careful [ more ]
No injuries from lifting weights. Injuries from climbing, softball and generally trying to keep up with girls, though! [ more ]
Have you gotten any injuries with your weightlifting??? [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks for your reply. We have like a bidet but its not sore on the outside and especially the itching (and burning) is from inside the anal canal… not so easy to get the Water There… and my surgeon didnt notice anything, strange… [ more ]
Brellis, it sounds like you might have a fissure in the anal canal. That gives you a burning sensation whenever some hard residue of the stool gets stuck inside it. Cleaning the anal region with a water jet after a BM usually helps with that. If you don't have a bidet or a toilet seat with such a function you can also use a shower head in strong jet mode. Anyway you should see a proctologist to have a look at it. [ more ]
Hi! Another question you might can help me with. I have for the last 2-3 weeks been having a terrible itch from inside the anal canal. And for the last week or two its also a terrible burning sensation when I’ve been on the toilet. And sometimes even to reliev gas it burns. i had an appoinTment with my surgeon 2 weeks ago but she didnt see anything suspect. I done eat any different either. any suggestion what the terrible itch and burn can be caused by? Its driving me crazy and no cream... [ more ]
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J-Pouch ForumsHelp! Need advice now!
hello, im wonder as you said @FRH about the open fissure. Did it heal? Or what did you do to make it better? i still dont know whats causing my extreme itching in the anal canal (not on the outside on the skin) and seriously acidic stool and butt burn. i dont eat anything different from what I usually do so cant really see what its coming from. I’ve also used Mosed of the creams without relief. Could a zinkpaste help? (My surgeon think it Will dry out the area too much) [ more ]
The Calmoseptine did the trick! I’ve been using it ever since & it pretty cleared up the issue. I used it religiously after every bathroom visit & now only have to use it occasionally. i ended up not going to NY. Just didn’t think it was safe enough to travel there, so I’m probably not going to see Dr. Shen until sometime next year. Dr. Shen has been really great with the telemed, so I feel good about waiting. Thanks everyone for all your help! It is much appreciated! [ more ]
akteacher, you had posted back in May that Dr. Shen thinks it (anal itching) "could all be due to other things" and he recommended that you come for 3 procedures. I'm just wondering what he thought could be causing it and also whether you ended up going to New York. Just looking for an update I guess. Thanks. [ more ]
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J-Pouch ForumsGeneral Discussion
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Thank=you, I hope everything works out [ more ]
@SadieM1210 Without a correct diagnosis every treatment is just shooting blindly. I take a lot of VSL #3 DS, and it works well for me * to treat chronic pouchitis .* There’s decent evidence for it helping with pouchitis, especially to prevent it (and Visbiome should work similarly). There’s no evidence that it helps with undiagnosed gas pain. [ more ]
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J-Pouch ForumsGeneral Discussion
I feel ya [ more ]
@Former Member hi Lauren🙂 its not so much the burning that bothers me it's the uncontrollable bms that will happen much later on in my day or even at night. [ more ]
I learned on here that you can take milk with spicy foods and that helps with the burning [ more ]
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J-Pouch ForumsHelp! Need advice now!
I met with Dr Dietz at Cleveland clinic in March 2022 for concerns relating to my Koch pouch (Barnett) which I have had for 42 years. As a patient and now retired physician, I was very impressed with his clinical acumen [ more ]
In response to your questions AMB, I was confident in Dr. Hull's assessment that the procedure (for pouch/vaginal fistula) which would have been done by Dr. Shen, would not have been successful. I continue to look at potential solutions but, for the most part, just live with it. jfill21, could Dr. Hull refer you to a GI doc? She must have working relationships with appropriate doctors. Also, there must be others on this site that had to change doctors when Shen left and can suggest one for... [ more ]
Thanks everyone. I’ve had my surgeries—I’m looking for a gastroenterologist as stated in my post. Dr Hull was my surgeon for steps 2 and 3 but now I need a good clinical jpouch doctor. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
Same [ more ]
@PHedges I'm glad you're asking questions and taking advice. I wish I had done more or even found this forum before my surgery. I feel like no one told me what I was going to go thru after my surgery. I thought I was going to get back to my life and just go on like normal but I guess we all have to find our new normal now. Good luck with your surgery. [ more ]
No need. In my situation it eliminated my uc. Which was low in my colon to begin with. I have had no problem since removal. Especially butt on fire issues. You can pm me.... Richard. [ more ]
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J-Pouch ForumsGeneral Discussion
@dlewicki My surgeon taught me and he just used saline when it would dry or start to stick. [ more ]
Same thing happened to me too, I just kept doing gauze and saline to be honest. If it aint broke no need to fix it. I am almost 7 years out and my scar is fine. [ more ]
I had a spot that wouldn't heal. Dr. cauterized and it healed properly. Stopped 'leaking' right away. [ more ]
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J-Pouch ForumsPouchitis
Sorry you are struggling, will keep you in my prayers. Your welcome, let me know how that goes [ more ]
Unfortunately, Lauren, doing poorly. On yet another antibiotic, Augmentin. My lower left pinpoint sharp pain and overall cramping, incontinence, etc are excruciating. This has been worsening and more frequent over the last year. I am having a scope next week and will not leave until the surgeon gives me some other options. Thanks Lauren. [ more ]
Are you doing better now??? [ more ]
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J-Pouch ForumsHelp! Need advice now!
All of your comments give me hope for the many years to come with my pouch, thank-you [ more ]
Roxy sorry you have to wait so long with the hernia. Not surprisingly I do worry about hernias, but I haven't had one despite four abdominal surgeries for the j pouch plus an earlier one for a kidney donation. In fact I do a fair amount of core strengthening and also weightlifting. I even did (very light for me) workouts when I had the ileostomy. Maybe my strong abdominals pre-surgery helped? Anyway, I started back very cautiously after each surgery. The only weird thing I've noticed is that... [ more ]
One of the reasons I’m going to have surgery now is because I have a pretty serious hernia that needs to be surgically mended. My understanding is that anybody with an ostomy is going to end up having a hernia since an ostomy is itself is a hernia. A friend of mine Who has an ileostomy post colon cancer had multiple hernias and ended up in the hospital for 11 days post surgery Because his colon would not start functioning. He is now ok. My understanding Is there without the J pouch and just... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Yeah I have my rectal cuff, under 2cm too. Typically: older school surgeons take out the rectal cuff and new surgeons typically do not, that is majority how it is but some are in the minority of it being opposite or depending on the situation. SOmetimes "islands" of the rectal cuff can potentially grow back but not much, definitely important to get scoped every now and then, every 1-3 years. [ more ]
I have a small amount of rectal cuff, last scope I had the new doctor said she left such a small amount cancer is highly unlikely. I have pouchitis but as far as I'm aware the cuff has not had issues. I was never asked whether I wanted it or not, it was just done, probably the standard. [ more ]
Sadly I do have cuffitis. It’s painful and none of the suppositories are working and I have had since 2017. I really wish I would have just went with the bag. The urge push and pain are almost unbearable but I keep plugging away. I am not trying to tell you what to do but just what I go thru almost daily. I think what Jan and Scott said is very important to keep in mind and ask your surgeons. I’d like to do what Pouch2021 had done. I just keep praying something will work or it will go away. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I always do Greek Yogurt for maintenance, about 7 years out and never had pouchitis. [ more ]
Daily antibiotics are a reasonable treatment for chronic pouchitis - I hope that’s what you’re “maintaining.” Assuming that you are treating chronic pouchitis, and that you’ve worked out your best doses of fiber supplements and bowel slowers, then you could try switching to Cipro, or (if that isn’t sufficient) adding Cipro to your Flagyl dose. When Cipro started to lose effectiveness for me I got good results by adding Flagyl. [ more ]
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J-Pouch ForumsHelp! Need advice now!
If the meds do not work, there is always biologics that can be used down the road. Definitely try everything else first if you can, like the meds mentioned above. [ more ]
@SteveG Thank You Steve for all your help. Very much appreciated. [ more ]
If you think it is a pouchitis / cuffitis then try the mesalamine as your doctor said. But if there is no improvement after two weeks then switch to another med, consulting your doctor of course. If Cipro alone does not help and causes constipation then a combination of Flagyl and Cipro (with a lower dose of Cipro perhaps) may do the job. I still use budesonide (Entocort) to protect me from cuffitis, that's cortisone with a mainly local effect at the end of the small intestine / pouch. It is... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
Thank you! I actually had surgery last night around 6pm. Two loops of my small intestine were “incarcerated” - their term, not mine!! basically the intestine was not getting its blood supply. Going home today! Thank you for your well wishes and it’s encouraging to know your husband was up and about quickly. I’m not one to sit around so, I will get out and walk as soon as it stops raining!!!! dss😊 [ more ]
Best of luck. For what is worth, my husband's surgery went extremely well. He was up on his feet in a day and back to golf in three. I hope you do really well. Remember it is not a complicated surgery. [ more ]
I was diagnosed w/‘wide mouth’ (sounds awful! ) periumbilical ventral hernia. Seeing surgeon on the 22nd November… super anxious about surgery!! Very painful 😖 I also had 3 stage J Pouch surgery. total colectomy/illeostomy- March 2021 ; Take down -June 2021 and final -September 2021 it has not been easy for me-chronic pouchitis/cuffitis/adhesions and have not gone back to work yet….. and now this! I’ll make sure to take pain killers as directed and not be cavalier!! I’ll let you all know... [ more ]
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J-Pouch ForumsGeneral Discussion
Hi Scott, I’ve never heard of psyllium, I’ll take a look into that. Since coming off my antibiotics my consistency has gone back to how it was beforehand and I’m getting frequent build up of wind (not as bad as before) so I’m unsure whether pouchitits is the issue I’m having here to be honest. I had a capsule endoscopy done the other day so hopefully they can see something from that because something definitely isn’t quite right. Things have settled at night since starting on my loperamide... [ more ]
There’s a small chance that you could have developed C. diff while on Cipro (though the Flagyl makes that less likely). My best guess, though, is that your stricture has been getting worse and this is its “evolved” behavior. I wonder if psyllium might work better for you than loperamide for this problem. [ more ]
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J-Pouch ForumsGeneral Discussion
Thank you! your post was perfect timing👍 [ more ]
Ouch, incarcerated intestine does require immediate attention. Good luck with your recovery. Take the teaspoon of Metamucil and don't be embarrassed to squat, it seems it's all the rage in India and elsewhere. [ more ]
Absolutely! Then again I say that as I’m waiting in the ED to have it repaired ! Happening at 4pm Awful pain sent me back to ED and they called the surgeon- Two loops of my small intestine are what they call incarcerated (weird name!) Im comfortable for now and just waiting / drifting in and out of sleep. [ more ]
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J-Pouch ForumsGeneral Discussion
. Have you tried Kegel exercises to strengthen your control? You can sneak them in during the day, and hopefully benefit at night. [ more ]
This might sound weird but it you wear a retainer or something or the like at night it can cause you to swallow a bunch of air causing gas [ more ]
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William J. Johnson
bjohnson@j-pouch.org
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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