J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsHelp! Need advice now!
thank you AllyKat. I appreciate the info and the dr referral. I hope you're feeling better soon! [ more ]
I have floppy pouch. I needed a resection to fix the issue. And at the same time my bio drug stopped working. I’ve been pretty sick. I went to Dr Schen for a second opinion. He actually misdiagnosed me. He wanted to put those clips in. After talking to my GI and surgeon I refused and now glad I did. Go see Dr Milsom at Cornell. He’s very experienced in floppy pouches. And My GI is Dr Scherl at the IBD center. Message me if you even want to use my name. [ more ]
Hi all - I'm new to this group and I'm sorry to see that there are so many unsatisfactory outcomes here. I had a j-pouch procedure for UC done in 1986 and have had pretty much every complication over time - pouchitis, obstructions, fistula. About a month ago, after being unable to pass much of anything, I was diagnosed with a "floppy pouch". Dr Shen at Columbia did a scope and inserted some bands but there's really been no improvement in my situation. Like many of you, I'm miserable - just... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hi all - I'm new to this group and I'm sorry to see that there are so many unsatisfactory outcomes here. I had a j-pouch procedure for UC done in 1986 and have had pretty much every complication over time - pouchitis, obstructions, fistula. About a month ago, after being unable to pass much of anything, I was diagnosed with a "floppy pouch". Dr Shen at Columbia Presbyterian in NYC did a scope and inserted some bands but there's really been no improvement in my situation. Like many of you,... [ more ]
I’m have this now. I’ve had 4 conservative surgeries and next week I’m having a resection. They found a long loop that needs to be shortened and scar tissue. what have you done for your issue? thanks, I know this post is old but if you see it please respond. I’m extremely nervous. [ more ]
Do you think you might need a pouch redo??? [ more ]
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J-Pouch ForumsGeneral Discussion
I have not talked to you or scott for years. I am not going to respond to you or Scott anymore. This is my last response. Leave me alone. [ more ]
Having someone tell you that you are posting nonsense when you are isn't being rude, it's being real. [ more ]
I am not going to waste my time reading all of this. Just please leave me alone, you and Scott have been nothing but rude to me for years. I want you two to leave me alone! [ more ]
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J-Pouch ForumsFAP Forum
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
All Pepto Bismol is, is bismuth subsalicylate. Its a metal which is toxic to bacteria in your bowel. It is also a mild antacid so I would imagine it is at least somewhat alkaline. I seriously doubt it will cause any burning sensation on the way out. I never experienced that. [ more ]
I have ordered some Pepto-Bismol. If I can’t take it, it can go in the medicine cabinet for other family members. Thank you @CTBarrister for the suggestion. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsWomen's Health & Pregnancy
PERFECT!!! My doctor told me to do the same. [ more ]
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@Ciara93 I don’t remember my pouch/incontinence being a big issue after my C-section. I had all of the regular symptoms that anyone would post C-section. Mostly I remember the trapped air under the shoulder thing being painful but other than that, it wasn’t more or less hard than my vaginal delivery’s, just different. Good luck!! [ more ]
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J-Pouch ForumsHelp! Need advice now!
That is pretty smart!!! I am so happy all of this worked out for you! Please let us know how it goes! Your own bathroom sounds lovely!!! [ more ]
No, it's in January but I know that my boss has to book the Airbnb soon so I wanted to reach out early [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
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If the board was hacked I would think everyone would have received the email, otherwise what was the point of the hack since the only thing of value would be the privately stored emails of members? Which reminds me that medical offices have become huge recent targets for ransomware attacks. I work as an attorney and handle many personal injury cases, and just in the past year, settlement in a couple of my cases was held up due to such attacks. I could not get current bills on my clients... [ more ]
Could you send me a copy of the email in a private message please? I I will send you a PM you can reply to. I will make sure the site administrator Bill J looks into it. I am traveling right now, but check my email daily. As far as I know our profile information is not shared with marketers. Jan [ more ]
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J-Pouch ForumsPouchitis
I see you are from Bulgaria! You write excellent English! Yeah I think you have pouchitis for sure. I would get antibiotics and see if that helps. [ more ]
I was 67. 5 kilograms now i am 65.7 kilograms i eat but everything is watery stools can because is like dirrhea lost kilograms(kg) [ more ]
Oh shit that is high AF!!!!! I would say you have pouchitis but I am not sure with the lipase thing unfortunately. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
"Stay strong, drink your water, and be kind to your medical support staff." Best advice ever! [ more ]
@JDsLightLab Have you ever tried a cheaper version of wipes??? The wipes you use are pretty expensive, just wanted to make a suggestion for you to save money. I use fragrance free wipes from Target (target brand) and target brand also makes sensitive skin moisturizing wipes as well, if you do not have a target in your area- i am sure walmart may be in your area. Have you tried or thought about using cheaper brand wipes??? [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
I didn't end up coming off HRT but I did reduce my estrogen and progesterone dose and this helped me in the reduction and frequency of PMS symptoms that include lower back pain and butthole irritation (especially hemorrhoids). I wonder if you're having an increased sensitivity to foods or a reduction in your production of digestive enzymes? I have been experimenting with those lately and they have helped reduce bloat and I feel like I'm getting more nutrition/energy from my food. That paired... [ more ]
My pouch has been going crazy in the last year during perimenopause. I'm getting a lot of bloat and not going to the bathroom as much as I used to during the day, but going all night. I go to bed looking pregnant then wake up after several trips to the bathroom looking normal again. Anyone have any tips? Does it settle down once you're in menopause? [ more ]
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J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsPouchitis
Will do! [ more ]
Your welcome!! Let me know how it goes!! [ more ]
This is very true! I will start it in the morning. Thanks for your input and concern! 😊 [ more ]
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J-Pouch ForumsGeneral Discussion
Okay, I found a nice summary here by the Crohns and Colitis Canada: https://crohnsandcolitis.ca/Ne...s-Uncovering-the-Hid It seems that what they discovered is that a gene in the non-coding area of DNA can actually turn on inflammatory action of cells that can lead to IBD and even colorectal cancer. They are not sure how this will translate yet into treatment or prevention, but it is an exciting development. Thank you for making me aware of this, Paul. [ more ]
Hi @Paul123, Can you please say more about this and where you found the information? I am curious. I will do a web search myself, too. Thank you. [ more ]
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J-Pouch ForumsGeneral Discussion
Safado, I know it’s even years and hope you’re repaired j-pouch still:doing great! Can I ask where you had your pouch fixed and did the repair hold? Thanks much. It seems I have a prolapse pouch but haven’t yet discussed surgery details. Just confirmed diagnosis this week. Thanks for any info you can share.ljz [ more ]
Thank you Scott. I appreciate your help and the insight from your posts. I hadn't heard of Konsyl but looks like a good option for all-natural psyllium fiber. It's a good point that I need to be patient with my body healing so thanks for mentioning that. [ more ]
First, be patient with yourself. You’re recovering from surgery, and your body will keep changing/healing for a while. I take one full dose of psyllium (per the package directions) before breakfast and dinner. It’s easy to experiment with the quantity to see what works best for you. I actually mix a half dose of Metamucil and a half dose of Konsyl, but the amount of psyllium is the same. I take one Lomotil at bedtime to help me sleep through the night. I rarely take a bowel slower otherwise,... [ more ]
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J-Pouch ForumsGeneral Discussion
I dont think I got answer about this or not. Do you still keep in contact with the people that have your son's organs??? [ more ]
Yeah I get it. But it also gave you a new life too! Over 30 years of peace. Might be good to celebrate that peace! [ more ]
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J-Pouch ForumsGeneral Discussion
CRP is merely a marker for inflammation. It could be high for any number of reasons. I once had a CRP of over 300 and the doctors never did find out why. I was fine two weeks later! [ more ]
The Prometheus test is the only blood test that purports to distinguish between Crohn’s and UC. It’s not very reliable. The distinction often isn’t very important - in my case they never actually figured it out. If you have active inflammation it should be treated, of course. CRP can help assess inflammation, and there are a variety of other tests that also can help with that. Unfortunately they can disagree. [ more ]
The only test I am familiar with is the Prometheus test that test for crohns or ulcerative colotis [ more ]
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J-Pouch ForumsGeneral Discussion
I know this is an old thread but just wondering how your appt went ( I know king time ago) and if you had surgery to repair prolapse. You may no longer be visiting this website but personals someone else had experienced a prolapsed pouch. Interested in surgical or non surgical options and where people are finding best, trusted care. I have had some tests done but have couple differing opinions from surgeons, at 2 different teaching hospitals, whether pouch or mucousal lining is prolapsing. [ more ]
Thank you GKU_51 & TROTTS. [ more ]
Hi, just wanted to wish you luck and heal fast! K im E [ more ]
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J-Pouch ForumsGeneral Discussion
Hope, I am doing good and have been for a long time. If you had surgery in 2022 you could be experiencing a lingering motility issue. Try taking the lomotil as I suggested 45 minutes before meals and if you see a noticeable decrease in BMs right after eating meals, it's definitely a motility issue. Lomotil is the drug prescribed for such issues, as suggested by its name although a better name would be Slomotil. As in slower motility. Many doctors call this phenomenon "spasmodic pouch",... [ more ]
Thank you for the detailed reply. My doctor did not mention that about Lomotil. He only said to me to take it morning-noon-night twice each time. But to be honest with you, I feel like it does not help sometimes. I’ll try your method for a few days and see if it helps. About motility, I’ll also research that. I’ve had my latest operation in 2022 summer so it’s been now 2 years. My doctor keeps giving me this iron pill that makes me ill with so painful diarrhoea and does not plan to give me... [ more ]
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J-Pouch ForumsPouchitis
I have used oregano oil capsules short term (like 10 days) to deal with minor infections/internal inflammation and on the skin as an anti-infective. I haven't used it for anything that would be called full-blown pouchitis. The type I have used is Gaia. https://www.amazon.com/gp/prod...ge?ie=UTF8&psc=1 Some people swear by Manuka honey as an alternative to ingested antibiotics. I have only used it for skin irritations and it works great! It's a bit sticky though. [ more ]
I would love to know more about using oil of oregano drops. I’ve had a J-pouch for 15 years and deal w/pouchitis and have to go on cipro. I am curious when I read the thread it dates way back to 2017 rather than anything more current? [ more ]
Can someone please please just share the name brand of the pure oil of oregano that they have had success with to stay off of antibiotics. I am desperate for some relief and the cipro is starting to lose its effectiveness. Not to mention tearing my tendons apart. please just share a name brand. Because all brands claim to be pure high quality. [ more ]
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J-Pouch ForumsK-Pouch Korner
I am so happy to hear that!!! For people that cannot have a j-pouch now have another option with a continent pouch!!! Praise GOD!!! I thought it was nearing impossible but I see its possible now!! Thank-you!!! [ more ]
Dr. Kiran probably does the most continent pouch surgery in the U.S. Very talented and caring. His practice, Columbia Surgery, is located in a building right next door to New York Presbyterian Hospital. I traveled to his office for a routine scope a couple of weeks ago. He repaired my valve and parastomal hernia in 2019 and I’m doing great. [ more ]
Found him!! Thank-you!! I was scared no surgeon does that surgery anymore! Glad there are some that still do! [ more ]
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J-Pouch ForumsGeneral Discussion
This is an old post. I hope your still among us! Please reply if you see this. R. [ more ]
Hope you are better now Lee. [ more ]
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J-Pouch ForumsGeneral Discussion
Pooping yourself on your rectal/incontinence pad and not even having feeling that you did so until the real urgent defecate comes on which sends you to your bathroom to find the effluent in a streak lined on your pad
Pouchomarx, I appreciate your response and you taking the moment to share that you are in a similar predicament I went out from morning till 2 again today only to come home to a pooped up pad in my Briefs I have not experimented with psyllium ever and don’t know if the water cookies would do anything i too just deal but it would ibe humiliating if I had a partner I was given notice or rather a heads up prior to rectal stump/cuff excision use to the threat of rectal dysplasia / I have... [ more ]
i had a redo in 2015 with a mucousectomy and ever since i am the same way. I always have to wear a pad stuffed up into the hole. I have more issues at night though but does happen minimally during day at times as well. I have tried psyllium husk and Imodium and those help some but it sucks. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thank you all for sharing your research, info, expertise on recommended antibiotics for pouchitis! Much appreciated! I’m more than halfway thru my Cipro dosage and have managed to avoid getting sunburn even with holiday weekend. I believe it alone helped reduce my frequency, which is I guess the most obvious symptom of pouchitis I had. After I messaged Dr re. taking both, reply was yes she wanted me to take both so I am almost a week into dosage of the Metronidizole. Haven’t noticed any... [ more ]
https://www.gastrojournal.org/article/S0016-5085 (23)05142-9/fulltext AGA Guidelines are not the most exciting reading, but support Cipro and Flagyl as first choice antibiotics, including in combination Recommendation 3. In patients with UC who have undergone IPAA and experience infrequent symptoms of pouchitis, the AGA suggests using antibiotics for treatment of pouchitis. (Conditional recommendation, very low certainty of evidence) Implementation considerations • Based on available... [ more ]
For what it is worth, I used AI to research medications for treating pouchitis. Not all physicians may know about these. Here is what I found: MEDICATIONS FOR POUCHITIS Budesonide and Entyvio can be used to treat pouchitis, although their use is considered off-label for this condition. Budesonide: This corticosteroid can be used for chronic antibiotic-refractory pouchitis, particularly in a controlled-ileal release form . Entyvio: This medication, which is typically used for ulcerative... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
I don't think anybody has noted this. Sure motofen, limotil, and other drugs are good at settling your belly and prolonging times between bathroom visits...but if you are having a lot of issues and you feel it is uncontrollable, please speak with your doctor about Tincture of Opium. I've not used this is about 8-9 years, but the 4-5 years surrounding my jpouch surgery I always had a vial of that stuff in the event "normal" methods didn't work. Tincture of Opium is basically a digestion... [ more ]
I have this problem intermittently as well...usually when I eat salads or have only been consuming liquids. It usually happens in the wee hours of the morning. I sometimes feel it happening but am just too tired to get up. I think it's just something that some of us have to deal with, and it's not the end of the world. You live to learn with these things and just deal with it the best you can. There are worse things in life than a little leakage. [ more ]
Hi ArchAngelThomas - you're right, we don't talk about this enough (and certainly no-one warned me beforehand). Yes, it took a long time for this to stop happening to me. I dom't mean to dishearten you, but I think it was probably three or four years before it stopped happening to me, but every person is different. I would say (if you're not already doing this), try not to eat after 7pm, and try really hard to empty the pouch completely just before bed. My leakages also often happened in... [ more ]
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J-Pouch ForumsPouchitis
I just finished my third loading dose. I was much happier on Entyvio. 10 years till it just stopped working. [ more ]
I had my first infusion of skyrizi yesterday. Hoping this one works better than the humira and stelara. [ more ]
Yes, that initial course of prednisone really made sense. I was also recovering from a Covid infection and needed some additional weight. I hope that Skyrizi will help you too. [ more ]
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J-Pouch ForumsGeneral Discussion
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I call them “discomfort height” toilets. [ more ]
I have always had difficulty emptying. Part of the problem is a mild rectocele but I have always suspected something else is not quite right. I have been able to live with it by using my fingers vaginally to do what I think of as straightening the shute. I looked into squatty potties then realized the stepstool I bought for the grandkids to use at the bathroom sink was right there in front of me. I still struggle to empty but the footrest does help since I'm only 5'2" with short legs. I hate... [ more ]
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J-Pouch ForumsPouchitis
I had ultrascans and CT scans iv got stones just wondered if people who had suffered with it notice that there jpouch becomes irritated and infected with the the gallbladder playing up. Thank you for your reply [ more ]
When I had gallbladder problems, the pain was always on the right upper quadrant. But it might be different for different people did you get an ultrasound? That’s usually how they can tell I think.. [ more ]
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J-Pouch ForumsGeneral Discussion
Likewise, wish you the best as well! I’ve been overall happy with my decision - and hope things work out for you too! [ more ]
@Zee3 yes, planning for pouch excision and end ileostomy in the next few months. Three days in the hospital is amazing! Gives me hope. Don’t love the 50/50 infection rate but imagine most are treatable. Will also ask about nerve damage in females with resulting urinary and sexual dysfunction. Doesn’t make sense that it only applies to males given the anatomy and perineal dissection involved with the surgery. Though expect they may not know the complication rate if not well studied. I didn’t... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Thank you. [ more ]
Yeah my insurance covered mine. Have the doctor enter the info as a "sigmoid colonoscopy" that will make more sense to the insurance company. [ more ]
https://www.j-pouch.org/topic/...9#713889682402771909 Did Medicare pay for you Pouchoscopy? [ more ]
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J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
Some of us J-pouchers including myself keep my stool loose as well, the looser the better it comes out. When mine is thicken it hurts or I get dehydrated easily. [ more ]
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All is well here since my takedown in July 2002! Very few hiccups and all easily dealt with. I eat and drink everything/anything including my favorite adult beverage....gin martinis! I eat popcorn with no problems and crunchy veggies and fruits.....apples with the peel! I don't limit myself by excluding any food/drink. I do try to watch portions because I can gain a pound or two or three by just looking at a piece of cake! I was 63 years old when I had my takedown. I, too, didn't mind the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
Thank you! [ more ]
Probiotics are a very expensive way to manage stool consistency. I’d suggest something like psyllium as an effective, inexpensive approach. You can tinker with the dose to find out what works best for you. The Wegman’s pharmacy did a bunch of looking around to help me find a “reasonable” price. Some pharmacies will make that effort and some just won’t. [ more ]
How did you get the price down? I need to go up to 1 1/2 pouches at least per day. You did get a little knocked off. I don’t know if it tells below, but I got my pouch 6/20/2000. Only had pouchitis once. I take the probiotic to thicken my stool a bit, mixed results. [ more ]
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J-Pouch ForumsPouchitis
Yeah definitely agreed!!! I went on a walk tonight and it was pretty relaxing! Maybe walking can help you too! And exercise in general! [ more ]
I'm so happy, Mrs P, that things are going well for you. I have Cipro right now. If it doesn't clear things up, I will definitely ask my dr what she thinks of Entyvio. Thanks for the info! [ more ]
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J-Pouch ForumsGeneral Discussion
I seem to need to go more often during a bumpy ride. Don't know if it's actually because of the bumpiness or if it's 'all in my head' because there aren't many potties in the boats or cars. [ more ]
Yes…it seems travel becomes more challenging I think maybe more so as the pouch ages. I hope you are able to find a way to overcome you challenges when you travel as well! [ more ]
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J-Pouch ForumsHelp! Need advice now!
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I learned recently that I don't have a rectal cuff. Maybe I should be thankful. [ more ]
Thank you for the update! So with the inflammation in the small bowel is he thinking crohns? Is that why biologics? I’ve always wondered if this might be the case with me. I’m seeing my doctor at Cleveland clinic on Friday so I guess I’ll see what they want to do next. I had a clean scope 6 months ago but this has been going on more recently. I’ve always had chronic cuffitis but it had been under control for a while now so now I just don’t know if it’s flared up, if it’s pouchitis (which... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
GEnius!!!! [ more ]
Using mesh to repair a hernia in someone with ulcerative colitis or another autoimmune disease can indeed present some challenges. The body’s immune system might recognize the mesh as a foreign object, potentially leading to an inflammatory response or even implant rejection . This reaction can exacerbate autoimmune symptoms or trigger new autoimmune issues . As for sacral nerve stimulators, they are generally used to treat conditions like overactive bladder or bowel dysfunction. While they... [ more ]
curious how this might affect people with UC? when i had my hernia fixed , Dr Shen was upset they used a mesh to fix it. He stated anyone with an autoimmune issue could cause more issues with putting a foreign material in your body. So far its been several years with no issues but i would think if a mesh could cause issues why wouldnt a stimulator?? [ more ]
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Join Us!
Founder, Creative Director & Web Master
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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Jan Dollar R.N.
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