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J-Pouch ForumsGeneral Discussion
Does anyone here have FAP?
D David1969
David1969 Thank you Zee. I am sorry that you have been through so much. Like you I have many polyps in my stomach and duodenum. I did not even know about problems involving the thyroid until I went to the Cleveland Clinic in 2010. 12 years after I was diagnosed with FAP. You are obviously a very strong person and a source of inspiration for everyone! And if you need to vent or just talk, feel free to message me. Please vist our new FAP support group site and share your story. [ more ]
Zee87 Hi David, I don't know of you're still reading these threads but I just wanted to say I was diagnosed with FAP in 2010 (I was 23 at the time). If you need to vent or have any questions please feel free to send me a message! Agreed, this condition can be frustrating. Since my FAP diagnosis I had colon cancer and thyroid cancer, and have polyps in my stomach and duodenum. It's not easy but it might make things eaier to know you're not the only one! [ more ]
BeckyM Hi David I found out in 2005 that I also had this horrible disease. I dont know as much as chuckus but I am here if you need help ro have any questions or just want to talk, I have a polyp on my major too and I am not certain of whats going to happen but I ope it is going to be a easy removal. Maybe you can help me understand what removing the major ampulla is going to be like for me, Anyways its good to have you here and feel free to ask anything, chuckus is the FAP wiz so he knows probably... [ more ]
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J-Pouch ForumsPouchitis
do you in fact have pouchitis?
R Rebe0505
Rebe0505 looks like you are one of the lucky ones that you can stay on cipro for continual time..most of us get resistence to a antibiotic unless we rotate.. but if that were the case no need to fear..rotating works as well and is not so bad if required..their are lots of them to pick from.. i presently have been on amoxicillan now over 50 days ..decided to just keep going with it myself and see how long i go..i have also been able to last few days knock it down to one 500mg capsule instead of... [ more ]
kta I've been on Cipro for 9 years now. I used to try to go off, but the pouchitis came back within two weeks at the most. I take 500 mg in the morning and my pouch does well with that. I also take VSL III prescription strength in the afternoon. The few times my pouch flares, I up the Cipro to twice a day and dump the probiotics until I go down to once daily on Cipro. I don't like being on an antibiotic all the time, but I dislike pouchitis even more. To me, it is as bad as UC and I am unable to... [ more ]
Rebe0505 jeane as i recall you have a fewothers issues but could your anal etc pain be causes by bacteria overgrowth for same reason the valve being missing?and if so like i said antibiotics still best option for now ..why are you off antibiotics?if it works why do you not stay on them?one of my goals is o try and stay stable as best i can so good days follow good days so to speak..part of what made me crazy ws never knowing from day to day how i was going to be..overall the antibiotics keep me more... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Low grade dysplasia--need surgeon recommendations
P PH
Not your average gal! Is the dysplasia localized or diffusely spread out in the colon? I had the same issue--in the form of an adenomatous polyp. Because of my long UC history (which turned out to be Crohns after the colectomy) and my family history of colon cancer, they lopped the entire colon out. Many people have a good result with this procedure. I am one who did not. I only wish I had done a little more research before hand, but I didn't know what I didn't know. In retrospect, since it was localized, I wish... [ more ]
Scott F Please give him my regards if you see him! I used to send him a thank-you note every year, but I've gotten lazy. [ more ]
suebear I also traveled to see Dr. Robert Beart. He is no longer at USC; he's at Glendale Memorial. I think his office is right next door to the hospital and is named the Institute of Colorectal Diseases. You can Google him. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Avascular necrosis??
Uc-DanielleUc-Danielle
LisaT I fell out of bed one day and couldn't walk. I went to my internist who did xrays, then to the ortho and the diagnosis was made. Honestly, the hip replacement was a "walk in the park". I had surgery on Monday morning and walked to pt on Tuesday morning, and went home on Wed am and walked up the stairs to my bathroom. I know that no surgery is easy, but compared to the other surgeries I've had, it was no problem. Good luck! [ more ]
Uc-Danielle What were symptoms so I know what to look for? [ more ]
LisaT I have AVN in both hips and subsequently, have had total replacements on both. [ more ]
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J-Pouch ForumsGeneral Discussion
Tell me about inflammation in retained rectum
P Pluot
Pluot Spooky I think it's the opposite, I'm so glad to hear that you're doing well now post-takedown despite having such persistent trouble with the rectum between surgeries. Sounds like the inflammation in the rectum is quite common and doesn't mean I'll necessarily suffer cuffitis later, which is definitely a load off my mind. Strangely I think I might finally be responding a little to the Canasa. I passed bloody mucus from the rectum 5 times throughout the day on Saturday (by far the worst day... [ more ]
Spooky Hate to be the bearer of bad news, but I essentially had a continuous flare in my rectal stump from the time of my emergency subtotal colectomy, until the stump was finally removed 2 years later. I had bleeding, mucous, pain, spasms--you name it, it probably happened. I had some varying and temporary success with Entocort and later Cortifoam (the Cortifoam worked well to settle things down sometimes for up to 3-4 days at a time, but I had to keep using it several times a week, and at almost... [ more ]
lovedby2 I'm 4 months post op takedown. I too had the 3 step and had my rectum removed in step 2 due to UC forming in it after step 1. Like someone mentioned above, it literally is a pain in the bum! My butt hurt for a good month and a half. Nothing helped prior. Diagnosed with unresponsive severe ulcerative colitis august 2011 Step 1 April 2012 Step 2 August 2012 Step 3 October 2012 Several complications in between [ more ]
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J-Pouch ForumsGeneral Discussion
Anal Alteration
K KiwiPoucher
KiwiPoucher I definately don't have a stricture. I like you am certain that my anastomosis has always been at a backwards angle. A flap of skin has grown down one side where the ilieum has been pulled through and sewn back on itself, front to back which is now deflecting it even more. Will post an update when I have seen my surgeon, which hopefully will be within the next few weeks. Caroline [ more ]
jeane If this a stricture st your anastomosis ? I have similar issues, especially with back output and I believe my anastomosis on in an angle sbd I also have a stricture with scar tissue that they have tried to dilate a few times. When it reslly acts up it is like passing stool through a plugged up opening which causes the symptoms you are describing. Not pretty I know. My surgeon had suggested pouch advancement i am curious what your surgeon is suggesting. If it is pouch advancement there is a... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hubby has pain on the side of his stomach
B bja72982
Jan Dollar People who have formed problematic adhesions (internal scar tissue), tend to continue to do so. It forms within the first two weeks of surgery, but can lay dormant for years, even decades before trouble starts. It is possible that this is from the surgery he had to release the adhesions before. If he feels like it is the same scenario, it probably is. The fact that he is still moving his bowels probably means it is just a partial obstruction; a little kink that can work itself out. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Antibotics and pregancy
DB Darcy B
Goodspeede I had Bactrim during my 2nd trimester. It was not for pouchitis - it was for a kidney infection. But it was safe and it worked! Good luck to you. [ more ]
jpouch2008 DarcyB, I am in the same boat. Waiting for Dr apt to see what I can take. Did you end up taking something? Is it better? [ more ]
clz81 Augmentin or amoxicillin is your best bet unless you allergic. In that case, there are some alternatives. Flagyl is ok in 2nd and 3rd trimesters. [ more ]
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J-Pouch ForumsGeneral Discussion
Cleveland?
S Schopenhauer
Uc-Danielle CCf is Cleveland clinic foundation I'm 99.9% positive lol been there enough I should know [ more ]
Schopenhauer Poucho....You mentioned that Lakewood is a 20 min drive to the "CCF main campus". What is that? All I can guess is some sort of Crohns Colitis Foundation hub located at a school. Is it the Clinic?....maybe the place I'd have to see a doctor or get my surgery? Sorry to be dumb but lol....that's why I'm here I guess. [ more ]
Schopenhauer Thanks Liz. Do you know: Is Cleveland Heights big? Are there good and bad places to be in it? Should I look for a place near Coventry Village or is it easily accessible from all over Cleveland Heights? Is Coventry Village as cool as I'm making it out to be or is it basically just another outside mall? How far away are they from the Clinic? Would you rather be in University Heights which is closer, or Cleveland Heights which is greener? [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
14cm Complex Ovarian Cyst
S Sonja6
kta Oh, gosh! I hope mine goes as well. He wants to leave the uterus since I have so much scar tissue, but take both ovaries and the one tube I have left. I am 55 so have no issue with losing those parts. I just want to protect the pouch. I could live with the bag, but really hated it when I had it. I have sensitive skin and by month two, I got so raw under the wafer that it came off. I was sitting watching TV and suddenly felt warmth running down my side. It was 8 at night. I didn't trust any... [ more ]
CeeeeCeeee I had some simple cysts on one ovary and my ObGyn kept following them with ultrasounds every 6 months. She finally told me I should have a complete hysterectomy since I was over 70 and beyond childbearing age. Interestingly, I had absolutely no symptoms! So.....a year ago I had the hysterectomy. I had an oncology OBGYN surgeon do the surgery upon recommendation of my regular ObGyn. He really wanted to do it all laparascopically but when he tried to do so, he couldn't because of the number of... [ more ]
kta To add to my info. and the whole uncertainty thing - at one time they thought it was a hydrosalpynx (sp?). My j-pouch doc mentioned it could be fluid filled areas that j-pouchers get. So no one really knows what it is, but, again, the oncology surgeon is pretty sure it's a tumor. I want a second opinion, but the doc I want it from is in the same practice so that is awkward and I want a totally unbiased opinion. Guess it is time for more research. [ more ]
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J-Pouch ForumsOstomy & Skin
Problem with skin under stoma
R rncrowdis
JillM Burning is not healing, its usually that effluent is hitting raw skin. I would change asap. I NEVER get 5 days of wear. I change every 3-4 days and find it keeps my skin better. If I have a raw skin area, I change every day till its gone because it gives the skin full protection from the eakin for several days. I would skip the wipe - all those preps irritate my skin more than they help. I use a convex wafer with an eakin, stoma powder when needed and that's it. No wipes, preps, pastes,... [ more ]
chiromancer [quote]The opening for the output has dipped down and is flush with the bottom of the stoma at the skin line! If anybody has this issue,[/quote This makes it very difficult to pouch. I would say you need to use an separate hydo colloid seal and or need a pouch with high convexity. Frankly this is a bummer. I had a flush stoma for about 6 months before it was revised and 2 days per pouch was all I ever got. A flush stoma is hard to pouch successfully. [ more ]
chiromancer Totally agree with Liz. I was told to change the bag at the first sign of discomfort, usually itching but burning especially. In my experience that is the right thing to do. My "sign" of healing is that I feel nothing. I will wait until it is convenient to change if I can. The output actually burns the skin due to the level of acidity, we have to keep the output off the skin. There is no way to see what is going on without removing the pouch and skin barrier. Five days pouch ware with an... [ more ]
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J-Pouch ForumsK-Pouch Korner
Considering KPouch surgery ?
Richard FHRichard FH
Richard FH The way it was explained to me was, That any minor problems such as fisulas,intesternal blockages etc ( which you would be unlucky if you suffer from any of these )should and could be treated by your local hospitals, More serious conditions where specialist treatment was needed your local health authority has a duty of care to transport and pay for any treatment needed, Basically they would ship you off to oxford for treatment.I have had conversation with a health care professional, where I... [ more ]
roxycan Thanks Richard, I will mention the cost savings to the Dr too. Yes I heard £150, im happy to pay if if its going to start things off. I dont want to live with a stoma when there is another option I would rather be seen at Oxford (just heard more infomation about it and good things about the surgeon) One question though, say I get the K pouch and something goes wrong, I live 5 hours away from Oxford, what do you do? [ more ]
Richard FH Hi Roxycan.I presume that you have a stoma ??? and in my opinion all of the products necessary to maintain this from bags to paste to adhesive remover (£17 a tin !!!!) etc etc is a vast amount for the NHS to fund. I have read that there was a study covering a 3 year period which concluded that you would reach a "break even point" on costings funding the k pouch op.Aswell as the obvious benefits of this procedure giving you a lifechange. I simply cannot believe such an arrogant GP !!!!!!! I... [ more ]
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J-Pouch ForumsGeneral Discussion
Antibiotics and inflamation pain
skn69skn69
skn69 Hi, How are you doing? Something in the arthromycine family, I was on agumentin for 2 7day runs and I only had ligament pain but now I cannot hold a chopstick (went for Chinese yesterday)...the hands hurt too much...just wondering if it is me or the antibiotics. How is your daughter doing now? Sharon [ more ]
beckysmom Hi Sharon, Sorry to hear about your bronchitis. Haven't been on site for a while. When my daughter was on cipro her joints ached. She could hardly hold a pencil. Are you taking cipro or something in that family of antibiotics? [ more ]
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J-Pouch ForumsK-Pouch Korner
Fistula??
grandma64grandma64
grandma64 Oh Bless your Heart!! I don't think I could ever move away that far, my whole family are so close! I'm very sorry you have had to deal with your health issues for so long, I pray that you can have some relief! Thanks for your reply! grandma64 [ more ]
skn69 I was born in the U.S, left at 7 and moved up north to become a Toronto girl...then here (Paris) at 23...I go back 'home' regularly and even bought a place w/my best friend Stateside...I intend to retire back home in about 10yrs if possible...For now I re-established my residency which was a biggie for me...but for now, life is here, the hubby +family...it is just very hard...I miss home. And for me, health care is a major factor in where and how I live...It is really hard to admit but when... [ more ]
grandma64 Oh yah, the flu has been awful in the states too, several people have even died from it, so sad! So far so good in my family. Glad to hear you're back working, that's awesome. So have you ever been to the U.S.? You take care and hugs, grandma64 [ more ]
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J-Pouch ForumsK-Pouch Korner
Need Saline for Irrigation for a revised K Pouch
A Aggie
Aggie Thanks, Big help on my stressing. Finally got through for the prescription call-in and for now, following orders to the letter. Glad to know it's not the end of the world if I don't have saline. [ more ]
skn69 Tap water is just fine but if you are really worried then boil yourself a pot of water and add a tablespoon of salt to it...or just boil a pot of water...and let it cool. Shaorn [ more ]
John A Are you certain you need to irrigate with saline? After my revisions I never did, just used room temp tap water... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Imaging for abcess/fistula
I ISeeUC
Mickshell Liz , please let me know how you get on, I never thought about whether I would at some point need a stoma location, so that will be one to ask my surgeon after my scans depending on which procedure they decide on. Im hoping in the next few months I will be going surgery as this is having an effect on every aspect of my life, and I'm fed up off it now, with the pain, discomfort, discharge and feeling unwell. Good luck Liz. shelly x [ more ]
liz11 shelly- thx for the info. I am up to almost one year anniversary of my jpouch removal surgery. Along with that comes one year of dealing with a sinus tract going into a large chronic unhealed wound (from where the jpouch was). My surgeon - best of the best- has tried everything. I have had 9 EUAs for incision and drainage and even an experimental glucose injection to instigate scar tissue formation in the last 10months. Last EUA was just last week, which included a nice 5day hospital stay! [ more ]
Mickshell Hi Lizz My previous surgeon who had done all my surgeries even tried something that had never been tried at the hospital before called endo-sponge vacuum assisted closure, it was like a wound vac, the sponge was placed in th perianal wound and I had a vacuum drain which I had to carry around ( it wasn't a good luck!) but that didnt work although I hear it works for some, it was suppose to be 10 weeks of 1-2 small procedures a week under general anaesthetic, for them to change the sponge and... [ more ]
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J-Pouch ForumsGeneral Discussion
Does anyone else have an uncontrollable Thyroid?
TE MarieTE Marie
TE Marie Thanks cassiecass! (please see my PM) The T3 and T4 are are the two things I was thinking of. They are only testing one and are not able to regulate it in me so they need to analyze both, correct? While I didn't understand everything in the article, I have a better understanding of what my GI specialist was saying. He oversimplified his explanation, to say the least. I wish I'd gone to see my endocrinologist a year ago. I know what I'm taking is the same as synthroid, I just don't remember... [ more ]
cassiecass TE MARIE WWW.THYROID.ORG There is an article this week on migranes and hypothyroidism. I hope my retention of fluid is related to the thyroid and not my heart. T4 is the thyroid hormone,to which we are taking.Whether you take synthroid or levothyroxine it is known as T4. If you have facebook log to and join for the latest info from the American Thyroid Association weblink.You do not have to be a nurse or Md to read. I also have neuropathy in my feet.Hate it at night. This week my pouch has... [ more ]
TE Marie Cassiecass, I lost a lot of weight the first year after take down, even with a messed up thyroid. I was so sick I had to make myself eat. Now I've gained some back. My hair is falling out again, another big wad in the shower drain this morning. I feel hopeless at times as I can't seem to get any of my medical problems stabilized. I'm not overeating but am also not moving much. Exercising is tough with my neuropathic feet. I don't know what T4 is, I better study up. Thanks for the link. I... [ more ]
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J-Pouch ForumsGeneral Discussion
Cuffitis versus Pouchitis?
aka KNKLHEADaka KNKLHEAD
liz11 you can positively have both at the same time. or even one at a time and then another later. [ more ]
Kia I'm definitely no expert in here but, from posts I've read, I think you probably can have both. It took my reading a lot of posts to understand the difference as I think the symptoms can be similar. I'd suggest searching on cuffitis and pouchitis in this forum to get a full understanding. In very brief summary, my understanding is cuffitis is caused by remaining tissue with UC where the pouch is connected. Pouchitis is an inflammation within the pouch caused by bacteria in the pouch. [ more ]
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J-Pouch ForumsGeneral Discussion
Probiotics & Antibiotics
TE MarieTE Marie
TE Marie Thanks Mary, I'm taking the s. boudarli or whatever, and thought it was a probiotic and was a bit confused as it's a yeast. I'm taking it with my VSL all the time as it's good for c-diff prevention. I'm glad your insurance covers the lower dose of VSL #3 as it makes sense that a younger person doesn't need the DS dosage. [ more ]
Rowans mom I am a bit late to this post, but while taking antibiotics you should take Florastor, (s. boudarii) it is a probiotic but a good yeast where as VSL is good bacteria. That is why it is not in VSL. The yeast doesn't get destroyed whilst on antibiotic. I give florastor and make the switch back to VSL after my antibiotics are gone. Then I hit it hard with the VSL we do 400+ billion a day which is 1 regular sachet of VSL for two weeks and then titrate to 200+ billion. Hope this helps. The VSL... [ more ]
TE Marie The only probiotic some insurance companies cover is VSL#3DS. I checked with my insurance company before I started taking it. It has to be the DS with 900 billion vs VSL#3 that has 450 billion. It doesn't have the probiotic in it that Jan is referring to so I bought it from Amazon.com for $14, 90 - 5 billion capsules. SO I am taking 2 a day. Thanks everyone for confirming the dosage. [ more ]
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J-Pouch ForumsHelp! Need advice now!
to Humira, or not to Humira
jeffpjeffp
LisaT Hi Jeff, Long story short, my pouch is 17 years old. I began having right side pain, three strictures, and an inflammed pouch about 3 years ago. On and off antibiotics, finally in Sept. the crap hit the fan and I ended up in the hospital for 19 days. I had a fistula and phlagmon (abcess). I also had the Promethius blood work done and it came back "inconclusive". I've never had bleeding typical with Crohn's. My GI and colorectal doc recommended Remicade. My choice was to give it a try, or... [ more ]
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J-Pouch ForumsGeneral Discussion
Acquiantance just had colectomy due to cancer risk
K Kia
Kia You guys are the best. Luckily, I've avoided the hospital for many years, but I had forgotten the little things that are truly appreciated! She's my husband's coworker's wife, so I only met her once. It was at a company party where we huddled in a corner and she asked me what to expect. Since we don't know her well, I'm just sending up 2 different scented lotions, 2 magazines, balloon and card. It's not a lot, but hopefully she is able to enjoy them. Thanks! [ more ]
CTBarrister I recently bought my cousin one of those "pet pillows" which is a pillow that has the head and feet of a bear, but it also has a strap that folds up into a velcro patch on the belly side, so that it looks like a stuffed animal rather than a pillow when you strap it or velcro it up. In other words, it can be used as a pillow or as a stuffed animal. The one I bought has the NY Giants logo on it and I bought it at clearance sale of Giants merchandise at Bob's Stores. Here it is - I got it for... [ more ]
liz11 eye patch thing so she can sleep at night or some kind of hand creme or a little stuffed animal. all could be got from the gift shop at any hospital. [ more ]
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J-Pouch ForumsGeneral Discussion
Never seen remzi so mad.
Uc-DanielleUc-Danielle
Uc-Danielle Thank you so much. And we learned that the hard way. So did my nurses they act so different when He's around and they jump at his call. I mean I would too. But it was just very frustrating yesterday and he was so mad and upset Bc I was in pain. Than you for all these tips!!! [ more ]
liz11 omg danielle that sucks. who are your nurses? I had absolutely great ones. If you are still going to be there for awhile ask about a PICC line. Tell your mum to remind all the nurses that remzi is your doctor. That's what my hubby does. They jump when you say that and then they really kiss up to your sore little bottom!!! hugs. [ more ]
Uc-Danielle Thank you. It was rough my right arm hurts so bad and she about list it when he got upset and he just texted my mom Asking if I was ok. And that he will see me and wanted me to have space Bc it was a lot of traumatic events. [ more ]
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J-Pouch ForumsGeneral Discussion
Nurses some good some not so good
Uc-DanielleUc-Danielle
Uc-Danielle Funny you said that we just talked to one. But we need to add the nurse from today on there. It's like she's questioning my pain and not caring [ more ]
liz11 danielle.. tell your mum to speak with a "nurse manager" immediately. You should not be suffering like this. Your mum can do this in a calm, polite way,.. and you will see results. Trust me. My hubby has had to do it before. And it works. [ more ]
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J-Pouch ForumsGeneral Discussion
Hello!
C Cody44
Cody44 Thanks everybody. And yes, I dehydrate at the drop of a hat. I'm 6'1'' and 135-140 pounds and no matter what I do I can't gain and I can't stay hydrated. But I'm VERY active, so I'm not complaining. [ more ]
Rosco79 Hi, I am similar to you in terms of surgery and UC diagnosis. I currently take loperamide (same as imodium), 2 x 2mg capsules three times a day before meals. I am sure this helps me a lot. I don't drink enough and since upping my water I do feel better than I did. I did have a stomach virus last year that gave me sickness and diarrhea and ended up in hospital as I was severely dehydrated, that happened super fast and was quite scary. I am currently underweight and in attempts to put on... [ more ]
Uc-Danielle quote: 1. Do most of you take daily meds to cut down your bathroom trips? 2. Do most of you suffer from dehydration frequently? 3. Do you work out much or any if so do you have any issues? 1. I use Imodium but have quit since I'm back in the hospital and having issues with pain and fistula 2. No but I drink a lot of water and keep g2 Gatorade handy 3. I haven't worked out Bc I have lost a lot of weight from my surgeries and wanna gain some weight and my takedown was recent so I don't want to... [ more ]
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J-Pouch ForumsGeneral Discussion
Soooo tired. What do you think?
K Kia
Kia Good grief, had no idea I could sleep so much. Usually I feel miserable if I don't get up early (even with the years of sleepless nights). I'm pretty in touch with my body, as we all tend to be in here, so I don't feel it's any more than catching up on much needed rest. But, wow, glad the kids are school age!! I have to go to a wedding reception tonight and really don't want to go. I feel fine, just want to sleep. I guess I should stop whining and just be grateful for the relief! [ more ]
Kia Thanks, folks. :: hits head on desk, snoring:: lol [ more ]
Jan Dollar Imodium can cause drowsiness too until you acclimate to it (it is chemically similar to opiates). Some people are affected more than others. Plus, now that you CAN relax, your body is wanting to catch up on some needed rest. Once your pouchitis symptoms were brought under control, your body could slow secretion of stress hormones like adrenaline and cortisol, and the result is a need for sleep. It just probably has been a long time for you since you were able to truly rest! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Any Help
TiberiusTiberius
Jan Dollar What about codeine or other opiates to slow things down? I'm sorry, but when things are really bad, I don't think that you can control it by diet alone. With the fiber, the type of fiber can make a difference. Some people are sensitive to psyllium fiber and it has a mild purgative effect and causes excess gas. In that case, maybe methylcellulose (Citrucel) or wheat dextrin (Benefiber) might suit you better. Another option is chia seeds. For me, fiber supplements might have thickened things,... [ more ]
Tiberius Imodium and lomotil have not helped me at all. I was starting to get the bad side effects from lomotil and have been keeping away from using it again. I have tried fiber also, but I get different directions from the doctors on how much to use. I am still at 20 times per day. I personally am not going to consider a permanent ostomy because of the problems I had with the bag during the J-pouch process. I am interested in reading what dietary suggestions people have come across along with the... [ more ]
Onwisconsin It may also be time to consider a permanent ostomy if things do not improve long term. It is not great to hear, but having no colon plus crohns and the frequency may mean life is easier with a permanent ostomy. Obviously you and your doctors will know what to do and when to discuss that option, but there are plenty of people who handle a permanent ostomy and life is just fine. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
24weeks and rectal pain -Hemroids or pouch issues?
K Ksande
Ksande Yes, meant hemorrhoids, thanks. Was bedtime when i wrote original post. The pain was almost unbearable...needing to go lie down and was persisting for up to 1/2 hour afterwards so I figured it wasn't just run of the mill hemorrhoids. But I started taking Zantac yesterday for acid reflux, and I don't know if it's related, but the burning, itching and discomfort have subsided for now. I hope this continues! [ more ]
skn69 Sitz baths with epsom salts? And wash with a squirt bottle...Easier on the bottom side and less irritating. Shaorn ps...Congratulations [ more ]
rockandroller hemorrhoids. common in pregnancy. not much you can do. Hang in there. [ more ]
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J-Pouch ForumsGeneral Discussion
Do you still have colitis after surgery?
pjayzpjayz
Spooky Unfortunately, this. Also, you can go on to develop cuffitis after surgery, which is just UC in the small, left over portion of rectum. [ more ]
Jan Dollar Yes, it is correct that colectomy cures the colitis, but as mentioned previously, you still have the same genetic make-up and autoimmune disease. You can still get some extra-intestinal manifestations, and some people find out that they never actually had UC, but it was Crohn's all along. And yes, it is also true that a diagnosis of UC (and most autoimmune diseases) disqualifies you for bone marrow donation. http://marrow.org/Join/Medical...stry.aspx#Autoimmune But, you can donate blood. [ more ]
liz11 you still have IBD. IBD is a systematic disease and just because your colon is out doesn't take away the whole disease. Its a very different scenario than a broken wrist. That is just a localized problem. IBD is systematic. sorry for the bad news. [ more ]
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J-Pouch ForumsPouchitis
Mild Pouchitis?
U 1970UC
1970UC Thanks CT [ more ]
CTBarrister Candida is a fungal or yeast infection and pouchitis is a bacterial infection or is caused by an overgrowth of bad bacteria. Increasing fiber and decreasing sugar/carbs may help. If these symptoms do not improve and go the other way despite this dietary change, you likely have pouchitis and will need to treat it. Do not let the situation go untreated if urgency or frequency increases, or if you have a sensation that you are not completely evacuating the pouch. [ more ]
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J-Pouch ForumsPouchitis
Do I have pouchitis?
H hoyasaxa27
CTBarrister I agree with this statement. I believe I had pouchitis for many months before it was first diagnosed and it very slowly got worse over the course of some months. It is not like you suddenly wake up and you feel horrible. You could have food poisoning or a bug. Make sure you drink plenty of fluids and stay hydrated!!!!!!!!!!!!! These events have great potential to cause dehydration. [ more ]
Scott F This sounds more like food poisoning of some sort, at least to me. For most of us pouchitis comes on more slowly and acts less like an acute infection. You have to stay hydrated, and make a judgement about when/whether to get medical attention. [ more ]
Bodoni Sorry to hear you are not feeing well. Yes, it is possible you have pouchitis. You might want to call your gastro doc if this continues for more than a day or two. In the meantime, eat soups and bland foods - and stay hydrated. Your doctor may scope your pouch. If it appears to be red and inflamed, he/she may put you on a 10-14 day round of antibiotics - such as Cipro and/or Flagyl. [ more ]
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J-Pouch ForumsGeneral Discussion
It's all over
D dodge
TE Marie Just because the surgery is scheduled doesn't mean you should stop fighting to get rid of the infection. Some people here in the USA have pouch repair surgeries. I don't know if it is possible in your case but if just a small part of it is bad, there was a leak or hole in it (?), maybe that could be removed and the pouch closed - made smaller, or something like that. It's my understanding that pouches stretch some with use. Even if that can't be done you have right up until they start to... [ more ]
lovedby2 I understand! It is very difficult for one to go through such major surgeries just for it to not even work in the end! I was on metronidazole and cipro up until about a month ago. So about 2 1/2 months on and I did notice a big difference when I would stop. Full blow flare ups it seemed like... I really thought I was going to be going back to an ileostomy and was thinking, that would be better than what I am going through right now... the pain was so severe, I had to keep myself drugged up... [ more ]
dodge Thanks Heidi The only meds I've ever been on since this all started has been more or less constant Augmentin and a brief spell on metronidazole. I'm in the UK and dont really know where else or who to turn to. My surgeon is highly regarded and im not sure where else to go. Whenever I've stopped the antibiotics the infection just gets worst. I've been told to stop them after today (7 day course). I just want to connect my pouch to at least give it a chance! [ more ]
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J-Pouch ForumsGeneral Discussion
Doing well on Flagyl, not ready to give up Immodium
K Kia
Jan Dollar That's a relief! There have been folks here who actually want and expect a solid, firm stool... Jan [ more ]
Kia Thanks everyone. By "like someone with a colon", I only meant that I feel well/solid. If I approached anything that looked like a normal BM, I'd be scared! I'll definitely keep a close eye on things. Thanks, again. [ more ]
CTBarrister I can second Jan's comments. When I started taking antibiotics back in the 1990s and did not really know anything about them, I figured I could take as much imodium as I pleased. As I increased my antibiotic dosage I ended up stone constipated and this caused a horrible bout with pouchitis. It is NOT a good idea to strive for bowel movements like what you had when you were coloned. It is not going to happen naturally and it shouldn't. You do not have a colon anymore and the pouch is designed... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
pain + healing + passing gas
J Jenmystique
Jenmystique Oh yes.. and I already knew from this site and my doctor to not "trust" a 'fart' and I typically don't. But I have woke up three times thinking I might have had some leakage issue because I knew "passing gas" (or 'farting') was what woke me up. I'm happy to report those three times it was not leakage but little bitty bits of air and that was all! Still don't think I'll trust my rear for a long long time awake. Simply because I have bad luck as a rule. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Low iron
L lhh65
Cody44 I startd seeing a hemotologist after my take down, and they discovered I was badly iron deficient. For the past 8-9 years I have had 5 Iron infusions, oral does nothing for me. I got the first 2 6 months apart, then a year, then a couple years and got my latest one last summer. Both my doctors say it's due to absorption issues. I do not know about the vitamin D. [ more ]
Scott F It's hard to become iron deficient without bleeding. Menstruation does count as bleeding, unfortunately, which complicates explaining things, and is why premenopausal women need dietary iron and often supplementation, and men don't usually need iron supplements unless they're bleeding from somewhere. Once you need iron to replace what's lost through bleeding, absorption can sometimes be a factor. I don't think a pouch affects this much (though I'm not an expert), but if you're having short... [ more ]
See all 2 replies...
J-Pouch ForumsOstomy & Skin
Can you get pregnant with an ostomy?
A Andreita
JillM I agree Marcene - I rarely think about my ostomy. Usually its if my daughter brings it up that it strikes me as different. Amazing what good health can do for the mind as well as the body! Love my ostomy and all it allows me to do! [ more ]
hart155 my second pregnancy was with my ostomy. No problems, wasn't even high risk,. Sex is no different with an ostomy, but it can take a bit after surgery to feel like you have your body fully back. I've never had a leak from sex. You may not realize unless you've had an ostomy for a while, but you don't actually think about it all the time and it isn't as big a part of your life or identity as others may think it should be. [ more ]
JillM Had a j-pouch, but had chronic pouchitis and chose to get a perm ileo. Got pregnant three times, miscarried once. I did need IVF to get pregnant (I had four abdominal surgeries before trying to get pregnant), but was successful first try with IVF all three times. I was 30 when I opted for the perm ileo. 34 when I conceived my first baby and 37 for the second. The current protocol is that if you want children soon - next 2-5 years - you get the ileo, then have your kids, then pursue j-pouch... [ more ]
See all 4 replies...
J-Pouch ForumsPouchitis
antibiotics as treatment for sideeffects of... antibiotics?
L LoveLife
CTBarrister Never had trouble with coverage for Xifaxin and I have been with 4 or 5 different insurance companies/HMOs in the last 10 years, and I have taken Xifaxin for longer than that. My pouchitis IS considered IBD. I think my Doc writes it up as "ileitis." [ more ]
marquis CT, thanks again. Did you ever have trouble with your insurance refusing to cover Xifaxin for the purpose of treating pouchitis? I'm reading that they have been known to refuse coverage of the RX for non-IBD treatments. [ more ]
marquis Thanks CT! I'm glad to know that people can be on Flagyl for a long period of time and not have issues. :-) [ more ]
See all 18 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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