J-Pouch ForumsHelp! Need advice now!
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J-Pouch ForumsPouchitis
have had my pouch since fall 09 and have had all the same stuff that you two are dealing with. Pouchitis creeps up on me and when I fainally do something about it Im usually walking around feeling like my arse is about to fall out. I take a lot of hot baths to ease the pain and when Im feeling blue and (although I know it won't help) I drink a few shots of something strong. This helps calm the mind and gives me a small respite from what life has dealt me. Good luck and know you are not in... [ more ]
Thanks for getting back to me! It sounds like you have been through a lot too!! I know what you mean about being nervous about eating things. I am very strict with my diet. I have found that eating several really smalls meals throught the day seems to help me. For a while after my surgery I was getting really bad stomach spasms when I ate. I don't seem to get that as often now that I'm eating small portions. I think I'm lucky- Up until this last case of pouchitis I tend not to get stomach... [ more ]
Hi There. I had my J Pouch done in 1998 and have very similar symptoms. I get pouchitis about 4 times a year and each time treated with antibiotics aswell, but usually goes away for a few months before creaping up on me again. I go to the toilet about 10 to 12 times in a 24 hour period, and is bad when the bottom stings. Like you I have just got out of hospital for my first obstruction which has now made me nervous when eating things. I also came out of hopsital with a staph infection so... [ more ]
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J-Pouch ForumsGeneral Discussion
thanks Sarah, I will check into this! I hope you are doing well. [ more ]
Hey Holly! I use a powder that you mix with water called Fruitein. It's got digestive enzymes and whole foods in it. I love it! [ more ]
Thanks for the responses!! I do take VSL#3 Double Strength every day. And I am really avoiding all the foods I know will cause gas. Of course sometimes I don't know it will till after, then it goes on the naughty list! I also think time is a great healer, doc said I still have another 6mths of healing ahead of me. So I need to pack my patience and enjoy life (which I am)! [ more ]
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J-Pouch ForumsPouchitis
http://www.facebook.com/#!/gro...12/?bookmark_t=group Thanks Lou Lou. Hey everyone heres my IBD, Ostomy & JPouch support group. Please feel free to join! [ more ]
Hi there, i am a fellow young Aussie with a 12 yr old j pouch. I'm sorry u are going through all this, I wish there was some quick fix, we all do :/ but ur not alone! I haven't been through much of what you are but I do understand allot of ur frustrations and fears, i guess i just wanted to offer you my support, I'm happy to chat or try and answer any questions if I can, believe me I have many stories still lol. Hope u feel better, stay strong! X [ more ]
Thanku Richard! Im going to look into this! Im in Australia.. so the first thing I have to find out is if I can get it here. Ill keep you posted! [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
Have you used lignocaine gel? or the stuff for angina (nitroglycerine? gel) the latter gave me a pounding headache (so use less!!!) but there is one manufactured specifically for the anal area I have used both in the past for fissures and both worked really well [ more ]
Thank you Jan. I'm STILL dealing with this fissure. It isn't nearly as painful as it was but it kind of waxes and wanes. I'm thinking I'll probably call my surgeon tomorrow, see what he says and probably end up just going for the botox. [ more ]
There really isn't any recovery time associated with the Botox injetions themselves, but you can have incontinence from the sphincter paralysis it causes, so that could put a damper on your return to work. It can take 3 months for thr Botox to wear off. Anal fissures can take a long time to heal. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
The battery is replaceable and although it sits in a proprietary housing you can just replace it with a regular Lithium-Ion battery found on ebay for less than $10 if it were to die. This unit does not have a filter, it has a mesh screen that may become clogged over time but easily cleaned out. The toilet seat is odd and I'm not 100% keen on the way it positions us men further toward the front of the toilet. Again, this is my first impressions. More info later. =) [ more ]
Received and installed! First impressions, very easy installation, the box had everything I needed for the install except for a pair of pliers. HOLY COW! Who pointed a pressure washer at my rear end?! I think this is going to take some time getting used to. I am initially regretting not getting the version that warms the water but I live in South Florida, it can't be that bad in the Winter? LOL [ more ]
I hear you Kathy...I thought it was a cute post when gleem started this thread. [ more ]
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J-Pouch ForumsGeneral Discussion
Colectomy/J-Pouch due to ulcerative colitis. Then we always have a discussion about it. [ more ]
I write that, and also pouchitis/ileitis, since it applies in my case. [ more ]
I usually write: ileo-anal anastamosis (j-pouch) secondary to Ulcerative Colitis. Then I tick all the boxes (you know the ones that say "do you currently have or have ever had...) about blood transfusions, anemia, surgeries, steroids, arrhythmia, hospitalizations, etc, etc, etc, and then I usually put a big bracket saying "re: Ulcerative colitis." Depending on the specific form, sometimes I tick so many boxes, I can only laugh about it. [ more ]
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J-Pouch ForumsOstomy & Skin
itsnotSherry, I just got back from the chiro after a month of such intense back pain (lower back, right sub-iliac)...that I wake up crying...I have been taking 2 naproxine a day and now have added 1000mg of tylenol 2xs day to just get it under control. The pillows help a lot but if I move, even slightly I wake up in horrible pain so I gave in and called my chiro for an emergency apt...turns out that all of the lower back muscles are kinked again and she worked on loosening them up quite a... [ more ]
Thank you Sharon. Your answer is very helpful! [ more ]
Itsnotsherry, I use 3-4 pillows to give my hips, back and shoulders the right support that they need to allow me to sleep...I use a long and dense body pillow that I 'hug' up against my body and throw my top leg over to ease the pressure on my sacrum/coxyx and that helps a lot for the lower back pain. I have a second that I keep low down on the bed that I keep between my feet (when on my side)to maintain the position of non-pressure on the lower back and put under my feet when I turn onto my... [ more ]
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J-Pouch ForumsGeneral Discussion
NJK- If you're worried about being continent at work, you may want to consider wearing incontinence pads until you're comfortable with how your pouch handles your work environment. [ more ]
Hey, I work as a teacher. You can't leave the room often in the middle of class. I usually have to run to the bathroom between classes, a prep hour, or a work-time once in the morning, but sometimes I make it to lunch. And once in the afternoon, though sometimes I make it to 2:55. So long as you have waking continence (im still working on the sleeping part) you can do any job. Even a job with meeting is doable if your frequency is down, just stop off in the bathroom before the meeting. I... [ more ]
I just reached my 4 year mark post takedown and debating a job change. I find myself fearing some positions that my pouch could interfere with and choose not to apply. I need to get past that. Anyway, my current jobs (I have two) work well with my j-pouch schedule, but I need a change for different reasons. In any case, I chose to notify my employer and/or coworkers of my situation when it becomes necessary. If I am having a rough patch and they notice my frequent BM trips, then I clue them... [ more ]
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J-Pouch ForumsGeneral Discussion
Yes, this feeling, awful as it is, is normal. It was my experience as well. It seemed early on that I could not do anything to contain the frequency. Low Fiber, high fiber, no sugar, no caffeine, loperimid, metamucil, gas-ex, beano. It didn't matter. I'm happy to say I'm two and a half now and in the last two weeks I've turned a major corner. I can eat (almost) whatever I want. I still follow the rules like no sugar, no snacking (I break that one time to time), low amounts of fiber with the... [ more ]
Gas-X will make those spasms go away. I was having the same issue. I take 5 chewable cherry flavored tablets per day. It REALLY helped a lot! [ more ]
heres the thing with me. i actually managed my colitis for a while with diet. i briefly took any of the meds they gave because first they didnt help and second i read what the aftermath has done to some. im used to figuring things out on my own and coming to an acceptable solution. i will deal with this in the same way but i can see it will be a whole different struggle. plus the fact that you are dealing with what feels very similar to colitis in the beginning and the aftermath of very... [ more ]
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J-Pouch ForumsGeneral Discussion
Use metamucil, benefiber, or something else like this to bulk them up. I like the metamucil caplets the best as I don't the texture of when stirring in water. There are also metamucil biscuts/cookie like that some like. My surgeon had me on both after my take down. You are not supposed to drink all the water called for as we have extra water waiting. [ more ]
Thoughts 13 days post takedown. Gas-X works wonders against spasms/cramps. Taking Immodium helps reduce the liquid BMs which in turn reduces butt burn but it plugs me up. I'm starting to wonder if I need to be dilated? Doing the Macarena dance when I feel plugged up helps in the bathroom. I know, that's pure sex appeal right there! LOL No Immodium = 20 plus BMs a day, taking Immodium = less than 8. [ more ]
takedown was a rougher surgery for me than the actual total colectomy. It does get better with time, you will learn all the tricks of the trade. Sometimes it is hard to completely empty your pouch and seems to take forever. I highly recommend getting a bidet for the butt burn or just sore tush from all the Bm's. I have the COWAY BA13, it is pricy but worth it and I got a handheld battery operated free travel one I use at work and on the road. Good luck and hope you start feeling BETTER soon. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
He said that he couldn't do anything else bc there was an infection. He put that in hoping that it'll clear the infection and then when he does the eua nov 6 it'll either be gone or he will put the seton in. So you have a mushroom drain? How bad is it honestly? I'm not a person who likes things sugar coated so you can either say it on here or private mssg me. I really love dr remzi and I know he treats me like his son. I'm not sayi he doesn't with everyone bc I know e does but I don't think... [ more ]
good luck nicki. Whats up with dr. remzi and mushroom drains? He put one in me a month ago and I'm back for another EUA in another month and supposedly might have this drain for 6months. I haven't found anyone else who has had to deal with this. Hope you are able to deal ok with yours. When I see Dr. Remzi next I'm going to suggest he try one out himself for just a week to see how bad they are!!! [ more ]
So dr remzi doesn't want to label it anything just yet. He put in a mushroom drain and I have to go back in 3 weeks. They want to see f tr infection is gone if its not then they go from there. I'm pretty sore today. And bummed I have to go back but it's for the best. I know that I'm good hands ESP since I heard dr remzi say as I was being put under that I was his girl. Makes me feel safe! [ more ]
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J-Pouch ForumsOstomy & Skin
Laura and Liz - All I can say is WOW! What a ride you both are taken in life! If you see my recent post UC to Crohn's I may be on my way to that however, I have only had j pouch for 5 months. Still trying to heal along w/you guys! Roberta [ more ]
Dear Laura, What a nightmare. Thank you for posting. I've been wondering if I'm going to need my pouch removed or have it disconnected down the road. [ more ]
wow laura.. glad to hear you have turned a corner. Your story sounds similar to mine but with the huge exception that they kept me in the hospital. I couldn't imagine being sent home in the condition you were. That is just awful. I too had told the nurses, fellows, residents, everyone.... that the horrid pain I was in was not normal post op pain... but no one listened. Until my actual surgeon came in one day, listened, immediately did a CT scan, and had me in the operating room in less than... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
i'm having a hard time following this... the surgeon examined you and said you have a prolapse? or not? a hemorrhoid? what is the problem exactly? the surgeon would need to examine you. it's hard to tell from what you are describing. pouch sticking to anterior? not sure if this is a big problem or not. i know some people have had their pouch tacked to their tailbone intentionally (not common, but it was because their body didn't scar the pouch in place). also, with prolapses, they tack the... [ more ]
Just saw my surgeon yesterday for a similar concern. I didn't know what was protruding out of my back end but it worried me because I hadn't noticed it before. After examining me, my surgeon said it was a large skin tag which had become irritated. My pouch was fine. Whew! I had forgotten I had that skin tag because it hasn't given me problems for at least 7 years. He told me to increase fiber supplements such as Metamucil and use cornstarch on the area to soothe and heal the skin area which... [ more ]
After being in one hospital then asked to be transferred to another for a specific doctor, the bowel obstruction or what was making me so sick actually took care of itself. the way the doctor explained it (like a rubber band that gets twisted it might go back to correct position on its own} I had actually gotten sick over about five yrs at times and this doc said he thinks it was scar tissue causing it. Before surgery I had suffered with something coming out of rectum that looked like stoma. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
That's BS. I'm bench pressing 225lbs for 10 reps only 7 weeks after J Pouch surgery. I've been lifting weights just as good as I did as when I had a normal functioning colon. [ more ]
http://www.youtube.com/watch?v=EDoujZ1K8ww [ more ]
I spent my whole weekend lifting heavy bags of dirt and I routinely life my 30+ pound son over my head. [ more ]
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J-Pouch ForumsGeneral Discussion
Best wishes to you for a big step on the road to good health. [ more ]
God Bless you and the medical professionals taking care of you! [ more ]
Thank you, all! I feel like I'm set for now. Tomorrow I go into the hospital for my CT (for another problem I had unrelated to UC or my pouch), my barium enema, and scope. I'll be admitted when all the testing is done, and will have surgery Thursday morning. I'll be in touch as soon as I can once I'm home. God Bless. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Pouchomarx, may I ask who your surgeon is that says to leave it alone? [ more ]
A sinus is like a fistula that leads to nowhere right? I'm with your surgeon on this one. if it isn't causing any issues, why have major surgery to *try* and fix it? i have heard great things about Dr. Shen, and I know he has helped many patients, but this seems a bit too aggressive in my opinion. my surgeon also feels if my tiny fistula is not bothering me, i should leave it alone. they said is very risky to start messing with it (that could make it bigger, in fact). if Dr. Shen thinks you... [ more ]
After my cuffitis inflammation subsided, Dr.Shen found a sinus. MRI by surgeon and he thinks this sinus has been there since my initial surgery 4 1/2 years ago when i had a leak then. Dr.Shen is trying to fix it via scope and kneedle/knife procedure.Had 2 done and go back for final in a month. He feels if it does not work i need major surgery again. My surgeon does not, and believes to let it alone unless it starts to become an issue as far as abcess. [ more ]
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J-Pouch ForumsGeneral Discussion
Precisely! We all need to keep this the back of our minds. Some people get new pouches built, some go to K or BCIR (? spelling), and some of us end up with crohns. I think they should keep every bit of the small intestine they can! [ more ]
One would think so, but who knows what goes on when we are under the knife. This came up when I asked specifically how he was going to perform the disconnect as I had just assumed it would be disconnected at the J pouch. Honestly I was shocked when he told me how he was planning on doing it. For most people 1.5 ft of small bowel may have little effect but you keep adding up all these surgeries and pretty soon you have, if not short bowel syn., very liquid output which is harder to deal with... [ more ]
Thanks Liz11 chiromancer, I didn't realize they wasted any of the small intestine . With the potential of short gut syndrome you'd think they'd do anything they could to save as much as possible. If I ever need this surgery I'm going to make sure and discuss this with them too. Thanks [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Good! I'm glad they prescribed her antibiotics as that could take care of several problems. That's the first thing I tried. I hope she's feeling better soon. [ more ]
thanks so much - she did call the gastro and he is prescribing an antibiotic - i did think it was something what you said - they did say that they only got rid of the colon so I believe you could e right - at least she can take an antibiotic which she could not do previously. Hopefully this will take care of it for now. [ more ]
So sorry to hear your daughter is having a problem. Blood can be caused by several things and she needs to see her GI or surgeon. I've experienced the same thing and it ended up being cuffitis. Cuffitis can occur where the j-pouch is attached, double stapled usually, to the rectal cuff. If like my case, the surgeon left 2 cm of my rectum attached to the sphincter muscle and the j-pouch was stapled to that 2 cm. I don't know about your daughter's surgery, she could have had a different kind... [ more ]
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J-Pouch ForumsGeneral Discussion
So I made my decision. I just ordered the Coco 9500XS, heated seats, heated water, and air dryer so no need for toilet paper. I'm pumped to give this thing a ride. I have an electrician coming over Wednesday to put in and outlet behind my toilet so I can get this party started. Is it weird to be excited about this? I've never sat on a bidet and never thought in a million years I would be getting one, but hell yeahhh I did! I'm gonna have the cleanest ass in town! My b-hole deserves it after... [ more ]
Coco has a killer deal going on right now until 11pm tonight. [ more ]
I have the Coway BA13, I love it (have 2 actually) and with each one you get a free hand held travel bidet, (which I use at work and on the road when I travel). [ more ]
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J-Pouch ForumsK-Pouch Korner
I think if you have a yeast problem, then sugar would be an issue. I personally don't have issues with sugar and never have. [ more ]
So all 3 repairs were for the same thing? [ more ]
I had valve repairs early on due to valve constriction and couldn't get cath inserted. I was never incontinent, though. I haven't had a repair since 1985 and hopefully praying never again! [ more ]
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J-Pouch ForumsGeneral Discussion
When I had remicade it was same as Marianne first then 2 weeks later then 4 weeks then eight after that. You can go to the remicade website and it explains the loading dose schedule. [ more ]
If I remember correctly I had one, then another at two weeks, then another at 4 weeks then it was every eight weeks after that. They call the first 3 loading doses. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsK-Pouch Korner
Thanks for asking dixie i see doctor Cohen on Oct..30 will let you know. [ more ]
Hi Rocky, Just wondering whether or not you met with Dr. Cohen & if he can give you another Kock pouch?? [ more ]
I had a Kock;1979 a standard ileo 2003 and a second Kock 2006. I am fine. If Dr. Cohen did your first and second surgeries then he has your surgical records and will know what shape you are in. He will not put you at risk. It's not in your best interest or his! [ more ]
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J-Pouch ForumsHelp! Need advice now!
I think you should speak to your doctor. Anything that is new..shouldn't really be ignored. Nothing to be embarrassed about, after all..he has seen and heard it all before I'm sure. Please check in with him. [ more ]
Becky, After 33yrs with the area sewn up I still feel pressure and phantom pains...it never totally goes away but it happens less and less often...stress will give you those pains (the natural fight or flight reaction means that the body was programmed to 'let go' before either reaction and that means emptying the bowels)...So stress stimulates it...your brain is basically telling your guts to empty out...but there is always the possibility that something else is going on down there..like an... [ more ]
I too sometimes have the urge to have a bowel movement even though I have had my rectum removed and sewn up with a barbie butt. My doctor said it is nerve pain and that if it got really bad he would put me on something like Lyrica which I believe is non-narcotic. I would definitely discuss it with your doctor especially if it seems to be getting worse or more painful. I am pretty sure it has to do with the nerves, not a blockage. With a blockage you would be experiencing G.I. symptoms such... [ more ]
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J-Pouch ForumsGeneral Discussion
take some benadryl [ more ]
Thanks for clarifying! I would not use anything unless your doctor or ET nurse recommended it. For sure, don't use a live Aloe Vera plant because it is full of bacteria. Best wishes! [ more ]
My basic colectomy incision was crazy itchy. I don't know if you can do this with a stoma wound, but could you apply ice or cold to the area (not directly to the wound of course, but via a towel/etc.). When I had shingles I found that ice would help with the itching sensation. You body can only send so many signals to the brain, and in that case the chill canceled out the itch. [ more ]
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J-Pouch ForumsGeneral Discussion
A J Pouch will not immunize you from food poisoning or gastrointestinal viruses and these events can hit very, very hard......and that is what it sounds like especially if you were vomiting. It's a huge problem going through these events because a J Poucher will dehydrate rapidly (in my case it happened to the point of passing out). The event itself would have happened whether you had the J Pouch or not. But having the J Pouch adds the risk of dehydration which will make you feel worse than... [ more ]
Morning Not sure,I experienced the same symptoms I went thru all year. I started to feel real good in August.This is why I asked the question to the oldtimers. I been till last week doing so well Never thought I go thru it all again. Thank you for your input. Cassiecass [ more ]
Could you have had a little bug or gotten a little food poisoning? I know there are times when I blame my pouch for things, but before I had UC and before the pouch, I still had times where I would eat things that didn't agree with me, so I wonder if some of those times it's not necessarily the pouch. Glad you made it to a year and you are feeling better again! I am 1.5 years out and doing well, too. [ more ]
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J-Pouch ForumsPouchitis
I am on 875 mg of augmentin twice daily. I cannot seem to get below this dosage without issues. [ more ]
I just had a scope about a month ago. The biopsy showed that I have colitis again... problem is, I had my entire colon removed back in 1999. So can any one explain how I would be able to get colitis again. I was always told that colitis only affected your colon. So, I am waiting patiently to get into Dr. Shen at Cleveland Clinic for some answers. [ more ]
What is the standard dosage for augmentin that a doctor gives? [ more ]
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J-Pouch ForumsHelp! Need advice now!
NJK, Fever, Nausea, vomitting???? Sudden sharp pains? Dizziness? Shortness of breath? Those are usually the signs I wait for to see if there is something serious and worth call my doc over or running to an ER...but what is your output like? Slow transit? No transit? Gassy? I start with in-put and ask myself if it has changed: what I am eating/have eaten...then my apetite: has it changed? Then my reaction to food...do I have heartburn or nausea (very rare for me) or am I throwing up? Food... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch experienced GI's and other doctors can diagnose cuffitis digitally. The cuff is right past the sphincter muscles. When it is inflamed it feels like a ridge where the j-pouch is connected to the rectal cuff. You could try to see if you can feel it yourself. I've had to use so many suppositories it doesn't bother me as it's just in an inch or so. You might feel better using a glove. If I'd never had it before I wouldn't be confident I could tell without a doctor's examination. I also... [ more ]
They would need to just put a procto scope or do a scope. Very simple. You would be given canasa. I would suggest getting vitalyte (any flavor) and ceralyte (plain flavor). The better hydrated you are the better your pouch will do long term. [ more ]
Unfortunately, I find myself dehydrated all the time..it's difficult drinking enough water everyday because I get bored of the taste, but I still try to portion it out throughout the day. Thankfully, today the pain stopped, or at least it lessened a lot from what it was before. I'm not sure what happened..but I still have the nausea and diarrhea. I was diagnosed with UC when I was 11 years old and I can't remember what it felt like having it, even though it became a big part of my life, the... [ more ]
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J-Pouch ForumsGeneral Discussion
This is the difficult part of all of this. Once reconnected, things improve greatly. Meanwhile, trial and error! I used Vitalyte as a hydration liquid and it worked for me. You can get it at camping stores or online. [ more ]
Don't drink when you eat. Don't drink all at once sip through out the day. Eat salty snacks. Try metemucile cookies. buy some vitalyte it really helps. You really need ceralyte or the WHO oral rehydration solution. If you get cerlyte get the plain. This is a must if you are dehydrated. [ more ]
Liz Are you using the same protocol now that you have the end ileostomy or just when you had the loop? [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
so they said...don't know if I really have CD or UC. They can't seem to make up their minds. [ more ]
Thanks. Were you taking it for Chrons? [ more ]
I was on Cimzia for 8 months. I did not have any issue with infections, at least not more than the usual. I too, work with kids. I was a bit tired for a couple of days after the injections, so I did them on Friday nights, giving me the weekend to rest up. I am prone to cold sores, and took valtrex as a preventative. Good luck! [ more ]
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J-Pouch ForumsOstomy & Skin
I am back to work, which is helping mentally, but exhausting physically. I feel stronger, but by the end of the week, am pooped out. It's better than being home, sitting on the couch crying and feeling sorry for myself! [ more ]
Sherry, Are you back at work and how are you managing? [ more ]
Please ask!! I feel the purpose of this site is to help others thru our own experiences. 1. My surgery took from 2 till 8 pm. The next morning my surgeon came in and told me to walk and chew gum. I looked at him like he was nuts, and didn't walk until the next day. 2. I was on a liquid diet for 2 days, then they went straight to solid, low residue. 3.The second morning, they took dressing off of bottom. I have never bled at all. The tricks I learned were to wear boxer shorts to get air... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsWomen's Health & Pregnancy
Thanks, Kate. Been feeling better. I guess it just depends on where the baby sits! [ more ]
I don't have any advice, just wanted to say so sorry you're dealing with this. I promise it's worth it in the end! [ more ]
Last night I had my first majorly incontinent night during the pregnancy. GI suggested upping the fiber and I think it backfired. Because pregnancy isn't sexy enough, nothing like a good old night time accident to really make you feel special. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
I'm so sorry for your family. Hopefully your boys will learn from this experience. Back in the day, when my kids were in pre-school at our church, their teacher had a fall lesson plan where they studied how everything was dying before or for winter. I wish I could remember one of the books she used. They taught about the cycle of life and likened it to the seasons - not just fall. Maybe there's a similar book like that somewhere, library, church, library??? Don't feel guilty for complaining... [ more ]
I really feel for them, and I remember when I got the same news about my Grandma. In those days, late 1960s and early 1970s, my paternal Grandparents were the de facto daycare providers for me and my sister. We spent almost as much time with them as we did with my parents. Things changed after my Grandmother died. My Grandmother was a tremendous cook and had natural culinary skills. I remember that she had a pressure cooker she was very fond of using to cook corn and cabbage. My favorite... [ more ]
Thank you all for your kind words. DJB, my boys are 10 and 11...just about your and your sister's age when your grandmother passed. I will tell them everything, but I just can't right now. They are going to be crushed. [ more ]
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J-Pouch ForumsGeneral Discussion
Please call and/or go into see your surgeon so she/he can examine the CTscan. They usually do a test before surgery where the put a fluid in your pouch to see if it leaks - while you and laying on a x-ran table. Has that been scheduled yet? I don't think they want to operate if you have an infection but the inflammation may be normal from your other surgery. I'd suggest you describe your pain to a doctor as well. Masking it with mj might be hiding something else that needs looking into. Plus... [ more ]
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J-Pouch ForumsGeneral Discussion
Yes it is not spread in a sneeze, it's direct contact. Like someone with it not washing their hands and preparing restaurant food. I had it with UC and have had it with my pouch. I had to go through 3 rounds of flagyl to get rid of it. The next step is vanco and if it still doesn't go away you need a fecal transfer like Bryan explained above. I had it with cuffitis and for months before I was checked for it. [ more ]
FYI - you may want to save your money and skip the cleaning cloths. A nurse told me that hand sanitizers and wipes are ineffective against c-diff infection, and the best way to prevent the spread is to wash your hands. [ more ]
had c-diff for just over a year. I had the same problem with antibiotics, the c-diff would adapt to them in less than a week. Absolutely nothing worked. Finally, my doctor suggested fecal transplants. This is a very simple procedure in which a small amount of stool that is taken from a person without c-diff (or any GI issues) is sprayed into the pouch (or colon) via scope. After the procedure my c-diff nightmare was over, gone and hasn't come back. As gross as this procedure sounds, it does... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hi All, Thank you for your help. The good news is that my skin appears to be healing. I changed eakin seal brands, have been changing daily, doing a domeboro's soaks AND began using paste. So far so good. Due to my skin being so difficult my surgeon is opting to move up the pouchogram and checking to see if I am good for my take down. Although I am anxious about having another surgery I am looking forward to being semi normal again. [ more ]
To help the skin heal around your stoma try this: Let a bottle of plain, non flavored Mylanta (or generic) stand upright over night. The next a.m. Pour off as much of the clear liquid as you can. Saturate a cotton ball with the thick, white residue and daub it on your dry skin all around your stoma. Use a hair dryer on low to dry the area and then gently brush off any loose powder with the back of your hand or with a make-up brush. Repeat at least once. Then use a product like Stomahesive... [ more ]
I feel your pain. I am 3 months out of having j-pouch removed. have only used moldables by Convatec and Hollister but they are not holding up. I am facing trying to use the Coloplast that I have to cut and I am clueless. Some folks say cut up against the stoma others say leave 1/8 inch. Then there are the barrier rings and all the different ways to use them it is too much. I feel so helpless and depressed, but enough about me. I did have a ET nurse use DueoDERM extra thin dressing on the... [ more ]
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J-Pouch ForumsGeneral Discussion
I was at the Trader Joes in Orange, Connecticut shopping this morning. They had a letter to all customers hanging over the shelf where the peanut butter is stocked. The letter apologized for selling tainted peanut butter, specified all the brands and varieties that were tainted (there were at least a dozen) and mentioned very prominently that they all had best by September 24 dates stamped on them. So if you have some peanut butter you bought at TJs' a few months ago with that "best by"... [ more ]
My parents were worried sick that I had cancer because none of the doctors would say anything until they knew for sure what was going on. Of course, a mind runs amok when not given information. Just doctors frowning and shaking their heads. I had to go to the adult ward because there weren't any open beds in pediatrics. My vivid memory (other than in the endoscopy room) was the dying elderly roommate with the death watch vigil until she finally died. Nice roomy for a teenage girl, huh? Good... [ more ]
I actually believe I was "officially" diagnosed in January 1973, but that the symptoms started in October 1972 after the salmonella poisoning. It's strange but I have three very vivid memories from that horrible stretch of my life from October 1972 to January 1973. The first is laying in a hospital bed in Bridgeport, Connecticut in late 1972, as a 9 year old boy, and watching on TV as Joe Namath and the New York Jets took on Johnny Unitas and the Baltimore Colts, with Namath passing for over... [ more ]
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William J. Johnson
bjohnson@j-pouch.org
Bill Johnson founded the J-Pouch Group in 1997.
After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.
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