J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Hello, Brad. A sitz basin might help heal and soothe the intense itching in the inside. You can find a sitz basin on Amazon or in a medical / health equipment store. They shouldn't cost more than $15. Fill it with very, very warm water and lower yourself slowly into the basin (the basin is meant to sit on the toilet rim -- lid up) and soaking your bottom until the water cools, will help heal the irritation or small cuts inside. Sitz baths will also help if you develop fissures inside. This... [ more ]
I am glad I will be able to get back to some kind of activity in the future. I know taking it slow, even with healing, has always been hard for me as I am impatient...And I am glad the scar tissue can loosen up and stop hurting. Thank you for your insight. I will definitely try the washing and blotting dry to help my skin as well. Thank you so much for your help. [ more ]
Hi Bradd, sorry to hear you are struggling. I'm a bit further on with my pouch, almost 10 months. At two months I was definitely having a harder time than now. I'm back to squats, deadlifts and core training - I may never be as strong as I was before, but at least I'm in the gym. I've stretched out all the scar tissue and it doesn't hurt anymore - wow did it hurt when I started core training again! I can even do 7 mile runs again, though I am slower than ever before. I've found that I am... [ more ]
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J-Pouch ForumsGeneral Discussion
Thank you. I really appreciate your advice on these forums! [ more ]
I normally use the liquid Pepto Bismol, which has to be shaken very vigorously before each use. I use the chewable tablets when I travel because they are easier to pack. [ more ]
Out of curiosity, CTBARRISTER - do you take the liquid Pepto Bismol, or the pills? [ more ]
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J-Pouch ForumsGeneral Discussion
Jock itch is a fungal skin infection in the crotch, usually in males due to the skin folding that can trap moisture. It’s essentially athlete’s foot in a different location. [ more ]
What's a jock itch [ more ]
It is good hear success stories. That is awesome to hear. I would b grateful and only look for good days to come. [ more ]
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J-Pouch ForumsHelp! Need advice now!
So... eye doc did a thorough exam of front and back of my eyes. Noted some inflammation in the front of the eyes, and talked a lot about my "tear shield." She is attributing some of the issues to looking at screens all day. Did give me some pred eye drops + a non-steroidal anti-inflammatory drop after a week or so of the pred. Also recommended a eyelid cleansing wash - said it might help with the "tear shield." No uveitis (of which, frankly, I'm glad). The only weird test she did was... [ more ]
I've also had uvevitis - there was no mistaking it. I came on very quickly, I had to wear sunglasses indoors, and the pain was over the top. Steroid drops relieved it. If you get severe redness and pain and light sensitivity do not wait around, the inflammation can damage eyes if not treated promptly. [ more ]
I've had uveitis 3-4 times, quite some time ago. Each time, my symptoms came on fairly suddenly and severely. I went straight to an opthalmologist, since my left eye was SO sore, red, blurry, and sensitive to light. Tell your dr. your history and your suspicions, they will look in your eyes with a slit lamp (if I recall the name) and see the inflammation and can diagnose it right then and there. My optometrists have also checked with a slit lamp, and told me they too could treat the uveitis. [ more ]
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J-Pouch ForumsGeneral Discussion
I have had TSA pull me to the side a few times. They always seem to point to the area of my j-pouch. I never tell them about it, they usually just pat me down and tell me to go on. I wondered if anyone else had this happen to them. Now I know. [ more ]
I'm afraid they'd want to do a body cavity search. I never want to fly again [ more ]
When I had an ostomy I was departing St Martin and was detained. They just wouldn’t listen to my explanation, I demanded a supervisor. When she arrived I just opened my pants further and she yelled at them to let this lady go by, what was wrong with them !! Very embarrassing, but funny in the end. 3 weeks ago departing Boston I was hand checked after the body scan. I now have the K pouch and had extra bandage coverage for the flight. Maybe that shows up? Better safe than sorry maybe Janice [ more ]
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J-Pouch ForumsGeneral Discussion
Thank you for the reply. My ileostomy was much finickier and more difficult than my j-pouch has been. I had trouble with blockages and I had constant reactions to the adhesives but I don't know if they have changed a lot since the early 2000s. I had random leaks at school, on trips, on airplanes, in the car and I developed burns. I hope the Remicade isn't responsible for the stricture! I've had them dilated in the past (pre taking any medications) so I know I eventually get them. In the... [ more ]
Hi Ellie. I know I’m probably going to scare you with my story, but if the pouch has to come out, the pouch has to come out. I, like you, developed a stricture at the top of the jpouch when I had a severe flare last year. My diagnosis was changed to Crohn’s at this point. I tried dialation of the stricture twice, but closed back to the pinhole due to the biologic stelara. Biologics unfortunately will keep inflammation down, but with close strictures even if you dialate them. I no longer had... [ more ]
Bo Shen isn’t technically a surgeon, he’s a gastroenterologist. That being said, he does use some small tools at the end of a scope (needle-knife, various claws, etc.) to attempt to address a variety of problems without conventional surgery. It’s an easy enough trip from the DC area to NYC, and Shen’s calendar probably is more open than usual because he’s just relocated to New York. If I were in your shoes I’d at least arrange a consultation to see what he recommends. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsPouchitis
I quit taking VSL when it wan't available any more. My insurance (Kaiser) does not cover it and I just decided I was sick of paying for it, so quit. You would think with all the new research on the importance of bacteria to our health, they would cover it, but things change slowly. Maybe one day. [ more ]
J Baru you should really start a new topic. Every one is different some people on here take a lot more than one packet, I usually get away with one a day myself. [ more ]
how much Visbiome are people taking for pouchitis...?(450 billion packets) I have been just taking one/day...seems to be ok...any thoughts? [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsPouchitis
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Hi I’m from Melbourne too. Have sent you a PM [ more ]
Hey thanks for sharing this. No, I haven't heard of them and will definitely check it out to see if they can help. Do you have a specific DR there with any experience with pouchs you like? Also those probiotics look good are you taking the double strength ones and if so how many daily...exsy yes. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hi Ross- I am about the same age as you, and also live in CT (grew up in Fairfield County and now live in New Haven County). I actually went to high school in Fairfield and later lived there until moving to New Haven County the last 20 years. What you are referring to as “precancer” is actually dysplasia. It’s also the reason I had surgery although it was low grade dysplasia. For surgery, I would suggest getting an opinion from Dr. Reddy at Yale. I have heard very good things about him. My... [ more ]
I made 4 trips to Eastern Europe, skied in the Rockies and participated in equestrian competitions with a J pouch. Although I did have a few problem episodes, for the most part things went well. If a J pouch does not provide acceptable results, you can always get a K pouch or BCIR, procedures that do not require having an external bag. There is lots of information in the internet about these procedures and I suggest that you do your research before making a decision. [ more ]
Hi! I also, was dx with UC in 98. It almost killed me I had 54 polyps but non cancerous. Miracle!! It was the inflammation so bad throughout the entire colon. I was on prednisone for months & lived with UC for 13 yrs on 13 pills a day of sulphazidin. It worked thanks to Temple Hospital in Philadelphia & my team of drs. Never thought I would have another relapse like the first onset. It was fierce & my dr said I was so bad the colon had to b removed & once again I might not... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hi I've had my pouch for 20+ ys and the single most important change I made to my diet was eating a 1 cup of cooked steel cut (not processed) oatmeal for breakfast every morning. I truly believe that for me it not only soaks up the excess liquid in my system but acts as a "broom" to sweep out whatever else I ate in the course of the preceding day. Since I started this routine, my frequently is way down (3-5 trips a day) and the butt burn is gone. I also minimize sugars, carbs, diary and eat... [ more ]
hi, scott. thanks again for your response! i’m hoping to receive some dietary tips. I was typically going up to 6-7 times a day but I started my cycle last saturday and the week before and this week have been incredibly difficult. 10+ times a day - very painful and uncomfortable. [ more ]
Just to be clear: is your concern too many bathroom trips? You’re just a few months out, so things are likely to continue to improve. It’s useful to distinguish between frequent trips for a full pouch (high output) vs. frequent, small amounts (a twitchy pouch). For the latter, many of us have had good results long-term by delaying bathroom visits (“stretching the pouch”); this is easier to do if it doesn’t cause accidents, of course. I’ve had better results with psyllium than Benefiber, but... [ more ]
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J-Pouch ForumsGeneral Discussion
I had my redo with Remzi and it was hand sewn with mucousectomy.. I do experience very minor leakage sometimes. like just a spot smaller than a dime, I use a small pad tucked up against the hole.. I don't have the best of diets which I am sure doesn't help.. But I also have irritation as well.. I thought it was from the leakage but Dr Shen stated irritation is very common in pouch redos due to the fact that the new pouch is closer to the surface typically... [ more ]
“A lot of pain” sounds like a good reason to look for a solution. Not all pouch re-do procedures are the same. One question for the surgeon could be whether you are a candidate for a stapled procedure rather than a hand-sewn procedure. The reason replacement pouches are associated with incontinence, etc. is because they are often done as hand-sewn procedures with mucosectomy, in order to address cuffitis problems. It’s the hand-sewn + mucosectomy procedure that has the higher incontinence... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
Thank you, Scott. [ more ]
Sometimes excessive gas is a sign of SIBO (small intestinal bacterial overgrowth). This is usually treated with several months of an antibiotic (commonly doxycycline or the much more expensive rifaximin). And sometimes gas is just...gas (from beans, sodas, swallowing air while eating quickly, broccoli, etc.). If you haven’t had a pouchoscopy before it’s probably worth a look, though the information probably won’t be life-changing. I guess lots of gas over an extended time period might dilate... [ more ]
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J-Pouch ForumsGeneral Discussion
David, i do feel for you. I think diet is the best way to approach any changes. I've recently been put on this: https://www.umassmed.edu/globa...dated-aug-1.2019.pdf . I had a wild ride. I was told I couldn't get pregnant, dad died, got pregnant, started seeing a little drop of blood in my stool (under major stress but didn't realize it). Had an emergency c-section... pooping like 6 times a day. Went in to see the OBGYN and she TOUCHED my stomach and told me I had an infection, was on three... [ more ]
It's funny you say that "have it worse". I worked as a patient transporter for radiology in a hospital. I got to see a lot of patient charts and talk with various people. There's always someone who has it worse that would kill to have your situation. I imagine someone dying from cancer would gladly take 10-15 painful bowel movements a day, or someone who is blind might even trade up just to be able to see again. It helps us keep things in perspective. At the end of the day, if your are... [ more ]
Hi bri! Thanks for reading my story. I feel like the Entyvio is helping definitely. It kept me in remission when I had my colon. As far as diet, I don't drink alcohol (it's super rare for me to even have a glass) since i got diagnosed, I stay completely away from fried foods (only a handful of greasy foods in the 8 years I've had UC), I rarely drink soda but I do treat myself to a sprite occasionally (once every two weeks), and sugar I swing back and forth. I love smoothies they seem to work... [ more ]
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J-Pouch ForumsGeneral Discussion
Agree [ more ]
Makes sense. I had misunderstood that the pepto was to help the blockage. One extreme to the other - story of the j poucher's life! [ more ]
Yes. Agree. When I have the blockage, I do not take pepto. Just when things r ok but running fast. One extreme to another [ more ]
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J-Pouch ForumsGeneral Discussion
My gastroenterologist told me years ago that products such as Metamucil are regulators. If you are constipated it helps and/or if you have diarrhea it helps. It works for me. A couple of other things I do if I feel as though it isn't easy to pass stool is to cough hard several times while sitting on the toilet or stand in the shower and aim the handheld spray I use right up my anus. Sometimes this relaxes everything so that stool flows. It doesn't matter to me if I use the shower stall as a... [ more ]
Has the thickness of the stool changed? Simple constipation could feel like this, and more water consumption might help (if it’s that). Other possibilities include a stricture or even, as you say, kinked intestines. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I lost 22 lbs after take-down and tried to gain it again by eating lots but was not able to. Then, a few days ago, I put on 7 lbs and my weight seems to be increasing. I was wondering if my bowel had been in shock for 7 months and has only just recovered. I read on here that someone else had gained weight after 9 months apparently for no reason after trying to gain weight for months. [ more ]
I went from 220 down to 183 and am holding there one year after my first surgery. Going for takedown on Wednesday so I’m assuming I’ll drop a few lbs right away again [ more ]
Hi, I lost a bunch of weight after my first surgery due to my bowel not waking up and moving stool. After the second stage was much better and I had no problems. Your metabolism will stay the same most likely, so if you put on weight easily that will likely continue. I always struggle to keep weight on. Do as much walking as you want until your doctor says it's ok to do more. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Thank you ! [ more ]
Hi Tim, I go to Northwestern and see Dr. Hanauer. He is really good, though getting an appointment with him as a new patient, expect to wait. Once your established they can get you in fairly quickly. The only other way to get in quicker is to get a referral to him from your doctor. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Not sure where I got Jan from!! I meant to say Winterberry =) [ more ]
Thank you both so much for your input!! I am in regular contact with my surgeon on alarming updates. He said it is all pretty normal with recovery, but was not sure why the mucus has picked up instead of staying consistent/slowing down. I have been trying your advice Jan on emptying as soon as I feel it and the pressure actually seems to have gone down. However now I am finding myself in the bathroom every hour or so. Having this group as a resource has been instrumental in my recovery and... [ more ]
I recall expelling mucus from 0 to 6 times a day depending. The quantity was never large, maybe just an ounce or two? You can always call your surgeons office - is there a coordinator or a nurse who helps? They've see it all so many times & surely will not mind if you ask! I think the output from the J pouch seems less smelly than the ostomy, but that could simply be that it's a lot less up-close-and-personal. Plus the distance to the JPouch is longer than the loop ileostomy, so it takes... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsPouchitis
I've gotten yeast in my pouch. Generally I can tell that's what it is if I have yeast infection itching around my anus. (I can tell the difference if Calmoseptine doesn't help the irritation and itch of the butt burn then it is a yeast infection) Generally three of days of the vaginal yeast infection medicine straight into the pouch at night cures it. [ more ]
Hi Lori, I actually read something recently that suggested yeast could be an alternative cause of pouchitis. I was also reading that a strong pro-biotic can help but might not be enough to knock it out so adding an anti-fungal like oregano oil might be useful. I just started VSL-3 a few weeks ago myself and am still having discomfort (trapped gas, feels like my pouch won't empty, increased frequency, watery stools, occasional nausea) so I'm thinking of tossing an anti-fungal in the mix as... [ more ]
Hi Lori- oh my heart aches for you if you have symptoms of pouchitis & yeast'itis'. I haven't suffered with pouchitis (knock on wood), but know the suffering of terrible yeast infections. Diflucan is the best cure & sounds like that was the 'resolve'? I don't have any insight to your issue, sorry. But hopefully others may and that is what makes this site so great. You're not weird, you're pretty darn smart- you may have solved & resolved yeast'itis'! All the best- Kara [ more ]
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J-Pouch ForumsGeneral Discussion
C'mon Dr. Scott, have doctors become lawyers now where everything they say means nothing? I expect a list of side effects to be exactly that. [ more ]
Side effects lists differ in completeness, sorting, and intended audience. Uceris is the same chemical as budesonide, with the exact same set of potential side effects. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Good luck cinder. [ more ]
Congrats on the next milestone. I go in this Wednesday for mine. I’ve heard laying specificity on your left side helps move gas [ more ]
Start eating thickening foods, pasta, applesauce, bananas, potatoes, you can Google for more. Also ask your surgeon when you can start taking fiber. That helps alot. As far as the bloated, try to watch the gas causing foods you eat. Raw veggies, beans, etc. You could try Beano with these foods. Maybe peppermint tea, or Gasx help some. Be patient. Very early days for you. It will get better in a few months. Just keep experimenting with different foods. And eat smaller meals. Good luck. Aimee [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
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That was it, duh.....feeling so DUMB!!! [ more ]
Been thinking what's different....I've been taking cranberry pills and they're very dark. I'm going to stop taking them today and see if the color changes. I have the feeling that's the cause...I'm hoping so anyway. Thanks, Scott!!! [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
Thanks everyone for their advice/comments. It really helps. [ more ]
It took me awhile to realize that having the J- pouch surgery gave me my life back. I went thru some tough times. When I look back it was the only decision I had and I am very happy that I went to Mt Sinai with Dr. Greenstein being my surgeon and Dr. Itzkowitz being my Gastro. [ more ]
Dr. Remzi performed all 3 stages of my pouch while still at the Cleveland Clinic back in 2008/2009. This was a first-time pouch and not a reconstruction. At the time he was still doing them all as open (non-laparoscopic) procedures. To this day I've experienced very little complication and am very happy with the results. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsPouchitis
Thanks JBaru for this reply. I am off the CIPRO now for a few weeks and so far so good. I’m supplementing with probiotics and using wild oregano oil as well to see if I can stave off the bad bugs from coming back. I used to take erytho as it was prescribed at that time for acne so it may not be as effective on me as I was on it for a long time. Again no side effects except sun sensitivity. I know what you mean with the CIPRO anxiety I was anxious on it as well and had a hard time sleeping on... [ more ]
On Entyvio now...biologics may be the way...we will see [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hi. Thank you so much for the recommendation for the D-Mannose I am getting bladder infections all the time. I’m going today to get D-Mannose again thanks ❤️🙏🏻💕 [ more ]
I have a pouch/vagina fistula and, as a result, was getting a number of urinary tract infections. A pharmacist recommended D-Mannose which is just a derivative of cranberry but apparently more effective that cranberry juice. It reportedly keeps the ecoli from attaching to the urethra. I haven't had an infection since I started taking it although I haven't tested going off of it to see. I take one capsule a day. Maybe? [ more ]
Yes--asking about the UTIs. Not sure if my friend (for whom I am asking this) could use an alternative to the nightly diaper, but am happy to relay any suggestions for that, too. Thank you again. [ more ]
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J-Pouch ForumsOstomy & Skin
It might help to get into certain poses - cat/cow while on hands and knees, spinal twists while sitting down. It might help move things along. I hope you’re feeling better by now. [ more ]
Get yourself Super Enzymes by Now. [ more ]
How is it going now? Hopefully things didn't block. Sometimes when I feel that pain around the stoma I massage all around it. I'm not sure if it really helps but it seems like it helps to push things through that might otherwise get stuck behind the stoma. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
JPOUCHER21, I’ve previously posted in detail about my year-long successful process of getting my insurer to cover VSL #3 DS. I included the text of the ultimately successful, annotated letter that I ghost-wrote for my gastroenterologist, and a link to the detailed policy that my insurer created regarding when they would cover it. You should be able to find these with a careful “Advanced Search” here, but send me a private note if you still can’t find the posts. After you exhaust your formal,... [ more ]
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J-Pouch ForumsGeneral Discussion
Gotcha. Doesn't sound great. Ugh [ more ]
Surgery can be done called “lysis of adhesions.” For some people it’s a godsend, and they never have another obstruction. For some people it’s no help. Tragically, some people get worse, even if they were pretty desperate to begin with. So it’s a gamble, and most surgeons hate the odds. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Travel safe, Vickie. All’s well that ends well. [ more ]
Glad you are feeling better, sorry your holiday went downhill. [ more ]
You guys were right, it was a bowel obstruction. What I didn’t tell you was that we are in vacation in Denver. We went to the ER at the U of Colorado Hospital. I was seen right away and after xrays they said it was an obstruction and may need surgery. They did a CT scan and put in an NG tube, gave me meds for nausea and pain. They transferred me to admit status, and moved me upstairs. They gave me a dose of Gastrograffin iodine contrast thru the NG tube and within about 2 hrs the floodgates... [ more ]
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J-Pouch ForumsGeneral Discussion
Thank you everyone. I am not great at drinking water and am feeling a little better after adding more water [ more ]
I do wonder what exactly you mean by solid stool? It should always be watery to some degree as your large intestine is what usually removes most of the water and forms your movement. You may actually be getting constipated or dehydrated? [ more ]
Has your doctor examined you for strictures? After years of watery stools your pouch could be very narrow. [ more ]
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J-Pouch ForumsHelp! Need advice now!
So this was a routine pouchoscopy, with no symptoms causing you to get it? The bloodwork is probably to help figure out what’s causing the erosion and proctitis. Whether the erosion is likely to get worse depends on what’s causing it. All of us prefer to stay off of medication. It’s also reasonable to be wary of any specific medication that made you sick or failed to work in the past. It’s also sensible to be cautious about taking medication if you have no symptoms. It’s best, though, to... [ more ]
Also, do you know if erosion continues to get worst? I am concerned because he said it’s near the surgical site/attachment. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
Thank you, I have an appointment next week [ more ]
You could have a GI infection, though the low bathroom activity in the daytime is surprising. Since you’ve had a month of this you might want to see your gastroenterologist and get tested for C. diff and other possible infections. [ more ]
You may want to keep a food/bathroom diary for a while. Also try moving your last meal earlier in the day. You said both 2-3 and 5-8 times at night? [ more ]
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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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