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J-Pouch ForumsGeneral Discussion
Xanthan Gum
JD Jeff D
TE Marie I took the "clear capsules" with the actual metamucil or generic powder inside of them. They were not a hard pill. Nothing came out looking weird at all. I passed some strange stuff out of my loop ileostomy so didn't take chances with hard pills or supplements of any type while getting the surgeries and after. [ more ]
Scott F The Benefiber brand has been off the shelves for almost a year now. It should come back at some point, and store-brand competitors are available. If Metamucil isn't effective enough, Konsyl reportedly has more soluble fiber per dose (it's more like Metamucil than Benefiber). I had poor results with the Metamucil capsules, since they didn't mix sufficiently, and came out looking like exploded capsules. The Metamucil powder works for me. [ more ]
TE Marie I think Liz's idea is great as we are not suppose to drink the fiber with as much water as coloned people. We are using it to bind our food and slow the digestion process down. I used the capsules instead of stirring it in liquid and found 3 before 3 times eating a day worked for me. 5 capsules = 1 serving of metamucil. I gradually cut it out as I didn't need it as my pouch matured. [ more ]
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J-Pouch ForumsGeneral Discussion
c diff
D drcvb
TE Marie Cipro is a good antibiotic that I use to take a lot. It is what I was taking right before I contracted c-diff years before my surgeries. I don't know all the names of antibiotics that can lead to c-diff are. I forget what I was taking during and after my surgeries, for my abscess etc. but it wasn't Cipro. I wasn't on any antibiotics this time I contracted it. My immune system is probably weak and invited it in. In any event I got it again in my pouch and having it and cuffitis at the same... [ more ]
Pouchomarx interesting regarding the cdiff. I was told and have been on Cipro a few times in the past and it was prescribed by either Shen or his colleague Lashner at CCF. I had cdiff right after takedown [ more ]
TE Marie I'm taking VSL#3DS probiotics and recently started taking "s.boulardii" the s stands for "saccharomyces". The s.boulardii is a probiotic strain not included in VSL#3DS. This is a specific probiotic that is good in fighting c-diff. Jan directed me to information on this. I ordered it from amazon for $14. 90 (non dairy) 5 Billion doses and the suggested 1 capsule twice a day. There were several different brands. After opening it is to be refrigerated to extend it's shelf life. I hope it's... [ more ]
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J-Pouch ForumsGeneral Discussion
Research question
JS Joe S.
CTBarrister -The role that diet plays in UC and specifically the growing debate over whether reducing consumption of carbs, sugars and processed foods can ameliorate symptoms. This debate may be a hotter button topic in the context of pouchitis (Dr. Bo Shen is a leading expert who advocates reduction of carbs and sugars in pouchitis patients), but it has some interest with UC as well. One of my best friends just learned his 6 year old niece has UC and he and his sister have been getting into fights over... [ more ]
Spooky - Genetic link to UC/IBD - UC vs. Crohns and/or indeterminant colitis: flipsides of the same coin? - what percentage of patients eventually have their diagnosis changed? How often after the initial dx is the 'new' diagnosis confirmed? Also, did the dx actually change, or was the patient initially misdiagnosed? Or, is there really not much difference in UC vs. Crohns other than how the disease originally manifests? - Is UC really more prominent in northern hemisphere, western nations, or is... [ more ]
Rick822 Why fecal microbiota transplantation be not being offered as a treatment and possible cure for uc. Thereis an excellent.article at i have uc/fmt [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hernias?
B Bethie
Jan Dollar Sometimes hernias can be sneaky, but they usually are pretty straight forward to diagnose. If she holds her breath and bears down, there should be a fairly obvious bulge that is visible or palpable if you hold your hand over it. Often, hernias do not cause pain, so pain is not a primary symptom. Abdominal pain can be caused by a variety of things. It could be she pulled a muscle during her workout (happens to the best of us). It is not uncommon for folks to get a bit too aggressive in their... [ more ]
Bethie Thank you both for the info - I didn't want to walk into the doctors office without some prior information; as it turns out he doesn't think it's a hernia, he felt absolutely nothing, although if it continues to hurt she will eventually go for an MRI - she stopped working out because she was in pain...more than likely she was using too much weight in her workouts. not a bad problem to have after everything else!! [ more ]
Jan Dollar I had an incisional hernia that cropped up a few months post op. I ignored it at first because I did't want to deal with it, because I had to deal with other complications. I brought it up to my surgeon about a year post op. He gave me the option to repair it or live with it, and I chose to repair it. It was elective because there was no entrapped bowel causing pain. It was a simple repair, but did require mesh and an overnight stay. I was up to my usual routine the day after discharge. [ more ]
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J-Pouch ForumsGeneral Discussion
Spasmodic Pouch?
JD Jeff D
CTBarrister Jeff- Just so you know bentyl and levsin are the "front line" drugs prescribed for spasmodic pouch. They worked, but the side effects were too strong for me. They may not be for you. As Jeanne noted donnatal is also prescribed for irritable bowel syndrome and it is something of a multipurpose drug. I found that it worked just as well for spasmodic pouch issues as bentyl and levsin with less of a side effect. You may want to try bentyl first because it may not tag you with loopiness like it... [ more ]
TE Marie I had IBS with UC and was diagnosed with IPS with my j-pouch, along with chronic cuffitis. Have you got IPS now too jeane? [ more ]
jeane Jeff..just an add on to CTBarrister's comments regarding the possibility of your having a spastic pouch. Donnatal is often given for irritable bowel. I was also prescribed it during my UC days as I had irritable bowel coupled with my UC. [ more ]
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J-Pouch ForumsGeneral Discussion
I&D and needle/knife and injection
L liz11
skn69 No knowledge or advice Liz, Just hugs Sharon [ more ]
n/a Liz I am so sorry to hear about all this you're going through. Can't offer any advice, although I wish I could - will instead send the most positive vibes possible. [ more ]
jeane Liz, I wish I could offer you some advice. I feel for you with all you are going through as I know you just want all of this to end and get on with your life. I am sending thoughts and prayers to you. You deserve to find the path to better health and I will pray it happens soon for you after you get through your next procedure. Hugs to you as you have been such a HUGE help for others like myself on this board. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Surgery decisions...
M musicmaker516
Pluot When you meet with Dr. Butler, ask if he can put you in contact with any of his former j-pouch patients so you can talk about their experiences. [ more ]
musicmaker516 Thanks for the input - After much research on reviews, consideration of convenience, insurance coverage options (which are few since it's Fidelis NY Catholic Health Care for low income families)- my husband and I decided to meet with Dr. Brian Butler in Buffalo. He has great reviews and the other surgeons in his group are recommended (though not participating in Fidelis. This is still a 2 hour one way trip, but will be easier for my 4 year old and husband. Anyone have experience with this... [ more ]
liz11 As someone who has had extremely bad experiences with pittsburgh hospitals - both of the major ones, and two of the "top" colorectal surgeons in pittsburgh, i highly recommend you call cleveland clinic yourself and check on their insurance coverage. You might be surprised. Cleveland clinic seems to take a lot of different insurances from all over the country. [ more ]
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J-Pouch ForumsHelp! Need advice now!
jpouch hell
MR Mike ryan
Donna H Mike, You are right when you say j-pouch hell. I, too, went through hell and I wanted to die. There is nothing worse than living on the toilet. It is painful, depressing and exhausting and I feel so sorry for you. Have you ever tried Pepto Bismol? It is safe and it has given me such relief, acting like an antibiotic. It cannot hurt to give it a try - maybe one in am and one in pm. I do not think your doctor would object - none of mine did and I have seen too many to count. You have my... [ more ]
Mark N I am 7 years out and I finally have the system to get me to 7 or so BMs a day. I eat only 2 meals, avoid fiber and gassy stuff like beans and hot food (no esy here in Louth Louisiana!). I take lopromide after meals and codein at night. As long as I don't eat I am fine. I find I go 3 or 4 times after each meal so I plan accordingly. I have also found that liquid meals like Ensure or Ensure with Yoghurt and maybe a banana only take one or two BMs so I eat that kind of meal if I am away from... [ more ]
liz11 Mike you might want to try the loperamide exactly 30minutes before meals and then right before you go to bed. If that doesn't make a difference, pouchitis might be suspected. [ more ]
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J-Pouch ForumsGeneral Discussion
tincture of opium
S Stone
liz11 Jeff mine was covered by insurance. It is a controlled substance so you need the paper prescription to get it filled. I never found a pharmacy that stocked it, but they ordered it and i always got it in a few days. And exactly donna, i would put my few drops in a syringe (i never mixed it with water), hold my breath, squirt it in my mouth, MAKE A FACE, SCREAm YUCK, And voila! [ more ]
Donna H I took Tincture of Opium for 16 years and I never built a tolerance for it and it was my savior when I needed to NOT use a bathroom when I was out and about. I took between 8 - 12 drops twice a day. It does taste nasty but a small price to pay for what it does. I would just put the drops in a small amount of water, take a sip, make a face, and voila. It is so expensive and I was lucky enough that my insurance paid for it. I would prepare a small bottle with my 8 or 9 drops with a bit of... [ more ]
Stone You are so right Liz. It works quite well. I took it down a notch. I could feel the difference . Im glad you mentioned that. Life can be so miserable and with a drop of disgust life gets beautiful. You can finally start enjoying the things around you. Thank you [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch Scope went well; have questions
K Kia
TE Marie It would be nice if you could start taking it now. I called my insurance company directly and asked if it was covered. I'd suggest you call your soon to be former insurance company and see if the DS is covered. Then a call to your doctor's nurse, asking for it to be called in with the DS might be all you need to do. If CVS is anything like Walgreens, the pharmacy you go to may have never had it prescribed for someone there before. I have to give mine a few days to get it in, they don't have... [ more ]
Scott F The DS requires a prescription, and thus most insurance plans cover it (or can be wrestled into submission). In my experience it's always been at the highest deductible tier. I've given up on getting it by mail order with my current insurance. I can get them to agree, but the time investment just isn't worth it. So I just get it at the pharmacy now. Some docs will write for the maximum dose (4 DS packets/day) even if you might take less. If your deductible is on a per month basis this can... [ more ]
Kia Thanks, Marie. I called CVS and learned she called in VSL#3 and that my insurance *may* cover the DS with a letter submission of medical necessity from my GI. The other fun wrinkle is my husband's employer is switching to a new insurance company effective March 1. Therefore, by the time we jump through the hoops with our current insurance, we'll probably already be moved to the new carrier. We don't have the new carrier info or insurance cards yet, so who knows if they will cover it. Sheesh. [ more ]
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J-Pouch ForumsPouchitis
Remicade as pouchitis treatment?
J JJA
Tigerstripe ❤️
HAP Hello, I take remicade for my arithris not for the pouchitis. It has not worked for me. I been on low dose of amox or cipro mostly amox for 6 years. Also, I take VSL #3 DS. I do watch what I eat to much sugar always causes a flare up. Good Luck Helen [ more ]
AllyKat I had chronic Pouchitis for 10 years and was on all sorts of meds, UC meds and antibiotics. The last flare was so bad I was offer pouch removal or remicade. I choose the remi but only did 2 infusions cause I got very very sick on it and damn took 3 months to leave my system. BUT, those 2 infusions put me into remission and it's been almost three years. I take lots of inflammatory vitamins and canassa at night which my GI said I can stop but I'm afraid. Good luck, I hope it works for you but... [ more ]
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J-Pouch ForumsGeneral Discussion
When will I be "safe"?
MN Mark N
Jan Dollar I guess I am sort of the buzz kill here, but I think once you have the diagnosis, you never are truly "free." Sure, the docs will tell you that once you pass a certain number of years without any signs of cancer, you can relax, but you still will need to continue to monitor indefinitely, as we all do. You can consider yourself cured, but still be vigilant. Jan [ more ]
jeane I think you should celebrate also. My mom had CC diagnosed 17 years ago with 2 lymph nodes involved and a highly aggressive type of cancer. She is alive and well today after having the tumor and part of her colon removed (no UC as that is on dad's side) and will be celebrating her 70th birthday this week. God bless and here is to continued good health. [ more ]
kathy smith I'm assuming you're now, and will continue to be, one of those above the sod. Wouldn't it be wonderful to have a crystal ball and know once-and-for-all if that cancer was truly gone forever? Since you don't have that, I think you'll just have to believe that it's so. Now go out and have a bit of fun and celebrate 7 years of cancer freedom! And congratulations! kathy [ more ]
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J-Pouch ForumsGeneral Discussion
Living with a bag....
CatajaCataja
Scott F I've composed several posts on this thread and then discarded them, thinking I hadn't captured the issue quite correctly. It seems like each of us is fighting for something that feels as close to "normal" as we can achieve. The idea of what is closer to (or further from) normal is really very personal - for some it might have more to do with pain, for others appearance might dominate (these are just examples). The fact that this is often a fight may lead to the jarring language, but as... [ more ]
DavieG I am just back from hospital (see other post ) having had a really rough 18 months or so. I can say without hesitation that had the surgeon not found and removed the polyps that appear to have been the cause of my misery I would have immediately been discussing a permamnent end ileo. Something had to change to give me a life back and no I would not rather have died. So Cataja I hear you and agree that sensitivity is a necessity here. We must all also understand everyone is different and have... [ more ]
fq Clever1 - you look handsome from your photo...I am sure you will have no problem landing a date. Confidence and charm will win a girl [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Thinking about the future.
J ju330
clz81 I had a very positive experience with a vaginal birth with my j-pouch. I did have one thing going for me though, which was that I had a baby pre-pouch so I had an idea of what to expect. My docs worked with me to plan for the most favorable outcome based on my history, my body, and the size of the baby a couple week prior to his due date. I'd be happy to answer more questions if you want to PM me, but know that everyone is different and each situation is unique. [ more ]
ju330 Thank you for the honest response. My surgeon told me that many of his patients went on to have children. I didn't think at the time to ask details about it... I guess I was just too focused on the matter at hand. I suppose I will have to ask him more about it at my yearly appointment. [ more ]
Kia I'm not sure I can give you happy information as my experience wasn't good. I gave vaginal birth. The OB wouldn't consider a C Section bc of my prior issues with adhesions. I tore badly after the episiotomy and had severe rectal pain for many months. I also staring having incontinence issues that still plague me. I may not be the norm. I don't know. I do know that doctors told me I should have no problem with being PG and vaginal birth. Unfortunately, it didn't work that way for me. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blockage/obstruction pain
B bratcat
bratcat I have had blockages in the past, but they usually cleared up on their own in 12-18 hours. I definitely agree that some of the pain was part of the dehydration. [ more ]
BethT Part of your pain could have actually been caused by the dehydration. I ended up dehydrated the first day I returned home from the hospital after surgery #1, and it felt like my kidneys were on fire, not to mention the all-over weakness and soreness. Glad all is well! [ more ]
TE Marie Great News! Thanks for updating us. [ more ]
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J-Pouch ForumsGeneral Discussion
New doctor is not recommending liquid vitamins. What do you think?
K Kia
Kia Thank you, Sharon. You continue to give me hope. After I got the results, I had a momentary feeling of "maybe it's just in my head or I'm being lazy." I snapped myself out of it, though. I am not going to buy into that anymore. [ more ]
skn69 Kia, Sometimes it is a combination of a lot of factors...general systemic exhaustion post disease/sugery/convalecence, diet, sleep deprivation and PTSD...it does not have to be just 1 problem and often requires a multipronged solution (diet, exercise, sleep (lots of sleeeeeep), suppliments (not all vitamins have to be at critically low levels to have a negative effect on you), dehydration, meds...). We have all learned here that there is rarely ever a single magic bullit solution...keep... [ more ]
Kia Disappointed. My blood results this morning are all normal, except Vitamin D deficiency. Well, I know that is good but I am disappointed bc it doesn't explain why I am always so sleepy and worn out. My psychologist suggested it may just be due to regular disrupted sleep to go to the bathroom and wear and tear of being in regular pain from the incontinence. I can say that I have had some relief with the addition of the immodium, GasX and probiotics. I actually slept through the nite for 2... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain in the butt!
L Laurarose
Space-baby Hi Laurarose, if you're in Berlin, I can recommend a top GI. [ more ]
kathy smith It sounds like it could possibly be a partial blockage. If so, then you'd probably want to stop eating solid foods. Drink warm liquids, move around as much as you can, take warm baths, get on your hands and knees and have someone grasp your hips and whip them from side to side, do a headstand (reverse gravity). I have resorted to jumping up and down to try to dislodge a blockage or making myself throw up. Try not to take pain medications because they can make things worse. If you completely... [ more ]
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J-Pouch ForumsGeneral Discussion
black outs when standing up
lovedby2lovedby2
lovedby2 Thank you all for the responses. I definitely have to take it slow, I'm having these more and more. Dr has me getting blood work done this week. He says he thinks I might be anemic. I also thought about my salt levels coukd be low, I'm going to mention it to him. Part of my daily regimen includes soaking in the bath to relieve some pain and pressure. O don't stand up anymore, that's for sure! I drain the bath low enough, do if I do pass out I won't drown, scary. I then climb out to a stool I... [ more ]
skn69 There is some sort of trick if I remember well...something like singing the words to a simple song (happy birthday for exaple...min 23 secs.) when changing positions...you have to move slowly and concentrate on first lowering your feet to the floor, then raising your body and then finally working to the standing position...the most dangerous changes in position are standing up after sitting on the toilet (we tend to think that because it hasn't been that long we can just pop up) and getting... [ more ]
kathy smith When I was severely dehydrated that would happen to me. Yep, you need to figure out what this is before you really knock yourself out. kathy [ more ]
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J-Pouch ForumsGeneral Discussion
One Year Later...
LB Lisa B
Lisa B I had lymphoma 12 years ago and have always thought the two were related. I was treated with chemo and radiation to the neck and chest. That would be an interesting study! I tell people I could hang a shingle outside my house and be a doctor now!! [ more ]
clouseau That is fabulous news! Good for you! Isn't it interesting that sometimes it takes a major trauma, or multiple trauma's to see life differently and appreciate what you do have. I believe in the last 2 years since getting a lymphoma diagnosis and having serious pouch problems, (I think they are related), the lymphoma has exacerbated the GI problems, I appreciate things more. I used to run at such a wild pace, am a business consultant, and I have really slowed down, work a lot less, and seem to... [ more ]
skn69 Fabulous news! Love to hear the 'good side' of the story...keep enjoying that beautiful life of yours. Sharon [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blood last night....???
DN D. Nocerino
TE Marie It could be nothing or a little broken blood vessel or something worse like cuffitis or fissures. If your trips to the loo have increased and/or you have any burning right inside the back door you might want to check it out. That's what led me to my cuffitis diagnoses - blood. [ more ]
kathy smith Blood sometimes happens. If it occurs once-in-a-while there is probably absolutely no reason to worry. Those blood vessels in that area bleed quite easily. I've had bleeding for several days in a row and then it magically goes away. But if you're very worried, give your doctor a call. kathy [ more ]
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J-Pouch ForumsHelp! Need advice now!
Son sleeps too much ...
L LilMoe03
TE Marie Is he old enough for school? His body might be in repair mode from all of his former problems. He also might be anemic or low on B12, or something else. Has he had a recent blood test testing for these plus vit. D? [ more ]
Subzeromambo Check the side effects of his anxiety and depression meds. Some of them can make some people very sleepy. [ more ]
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J-Pouch ForumsGeneral Discussion
Diet - What we eat really does make a difference
S Solomin
TE Marie Cindy, I think it's great you got to have the surgeries done in one step! Just be careful when adding new foods to your diet and only take a few bites until you see if it agrees with you. Watch out for fresh veggies and fruits, except bananas. They bother some of us but are fine with others. I hope all is going well! [ more ]
Cindy Michigan I had my J pouch surgery Jan 21st. It was supposed to be the first of two, but due to unforseen things inside, my surgeon went right to the J pouch. I am slowly introducing new things to my diet. Are there things I should avoid? I am not eating anything spicy or nuts seeds or popcorn. I don't seek the advice of dieticians, unless I could find one with a J pouch. [ more ]
Jan Dollar Agreed, but still, it makes sense to understand the science of nutrition. There are so many dubious claims out there, it is difficult to sort it all out. But, when a Registered Dietician (not just a nutritionist) speaks, I tend to listen, especially one with many years experience. They are the ones who have to have specific education and training to obtain their licenses. Still, you have to really listen, because they never will tell you that one thing or another will kill or cure you, just... [ more ]
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J-Pouch ForumsOstomy & Skin
lots of probs w eakins and bag changes
D Danita
gmarie1208 Have you tried Convatec durahesive moldable convex wafer since your stoma is weirdly shaped. Call them at 1-800-422-8811 for samples, they are not stingy, they will send you four to try. I never liked the Eakin. I use the Brava moldable ring by Coloplast. Lots of folks also like the Adapt barrier ring. Instead of using the whole ring I cut in half make a circle ring of it and shape it into the wafer. I have an end ileo and it has taken me almost 9 months to find something that halfway works. [ more ]
rncrowdis My husband recently had an ileostomy and the area just beneath it developed what looked at first like a split in the skin. The doctor said it was normal, but it is now bloody and we are having leaks because the paste doesn't stick well to it. We tried putting stomahesive powder on it, dampening it, reapplying and dampening three times to make a crust, but the area is fairly wide and we aren't sure what to do. Don't want to keep changing bags..they are so expensive. We will call the osteo... [ more ]
D. Nocerino I had the same problem with my loop ileo. My stoma was very flush with my body and had the same issue. As soon as I told the stoma nurse at the hospital about she gave me a new appliance with a riser, which is like a special ring to the flange that helps the stoma stick out, and it really helped. I also had issues with changing and output. I waited 2 hours after I woke up, like if I woke up at 8 I would do the change at 10, and it behaved for a bit. It was to a point that I was so quick and... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I need a good cry and wondering what is up with me.
K Kia
skn69 Kia, I lived in a world where people didn't go to therapy although I did have a couple of very negative experiences with a psy when I was very young (everything was about sex for him...I was worried about infertility, he said that I needed sex, I was worried about incontinence, he said I needed anal sex...I was 14 at the time but intelligent enough to dump him rather quickly..)I don't do well with Freudians...I tried group thereapy at the Sick kids hospital after that...the problem was less... [ more ]
clouseau Sharon, How amazingly strong you are! I got goose bumps reading your story. Kia, We are all wishing you the best and yes this forum really helps so much. I just wish there was more I could do in return. I am astonished how knowledgeable so many of you are espectially Jan. I must admit I never thought I would be part of an internet based group and this and my lymphoma web based group have made a world of difference to me. Thank you. [ more ]
TE Marie I didn't see why we had to go back to the past and thought I'd dealt with it all. I was helped by doing it and remembered details I didn't even know I would remember. It's like digging it up from your subconscious brain, dealing with it now and filing it in the conscious vs letting it stay and fester underneath. That's how my therapist explained it to me. I tried EMDR as my step-sister suggested I needed that therapy. I am now a believer. The initials don't describe how the therapy has... [ more ]
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J-Pouch ForumsGeneral Discussion
Dysplasia in the Pouch
A Alysia
Alysia I am sorry that you had to go through 4 surgeries but at least we do have great surgeons and are lucky to live close to NYC. My surgery for the jpouch was done in one step. I started the 6mp January of 2010. There has not been much difference in my scopes in regards to the inflamation but the 6mp has significantlly reduced my nightime incontinence. And yes it did take about 4-6 months since I noticed a difference. [ more ]
CTBarrister Yes, Dr. Gorfine either assisted or led on all 4 of my bowel surgeries. He is an excellent surgeon. Dr. Bauer is great too. Don't know how long you have been on the 6MP but my understanding is it takes some time before the results become palpable. [ more ]
Alysia Ok, I really hate my laptop because I just spent a long time typing a message and I must of deleted most of it So in a nutshell CTBarrister, I think we have the same surgeons, Dr. Bauer and Dr. Gorfine who by the way are awesome. Anyway my gastro says my last option to try is Cimzia and I am scared to go on that especially since I feel okay. I also discussed Cimzia with Dr. Gorfine and he feels if I am doing okay with the 6mp he thinks i should just stay with that since that medication has... [ more ]
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J-Pouch ForumsK-Pouch Korner
Sore skin!
grandma64grandma64
skn69 Grandma, Just 1 more thought...do you take any suppliments? If so, iron and Vit B complex can both burn your skin through acidy output...if so, they have less of a negative effect on your skin if taken with a meal and not on an empty stomach. Sharon [ more ]
grandma64 Never thought to try these, I'll have to give them a try! Thanks for the reply. grandma64 [ more ]
Bodoni Once you get the skin healed up around your stoma, you might try skin wipes. I forget what they are called, but you just tear open the little packet and apply to the skin around your stoma. It dries quickly and provides a protective coating.Oh, try this site- http://www.totalhomecaresuppli...ducts/sssns80725.jpg [ more ]
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J-Pouch ForumsHelp! Need advice now!
NEW J POUCH FOR WIFE - POORLY..NEED HELP
S seen
AP Every time I feel as though I have to go and know that I don't have to, I take a glass of water with psyllium fiber added to it. I don't why it works, but it does. It takes away the feeling and makes my stools more formed. Anything is worth a try, right? Good luck. I had a hellish time for six months and now have had a successful seven so far. [ more ]
hever I've been taking 8 panadeine forte daily, just had the liver test repeated and its stable so just gonna carry on for now.Its because of the paracetamol part I think that I keep having to have liver tests. None of the other meds worked on me, had them all by the truck load.How's your wife feeling now, any better? Tell her not to get depressed, it can take a while for the body to adjust to the pouch, not the miracle take over the specialists believe, Heather [ more ]
tammykathleen Seen, I am just reading your posts and since your last post was over a week ago, you may have already taken your wife to the ER (AE). Is she feeling any better? ~Tammy [ more ]
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J-Pouch ForumsGeneral Discussion
LEAKS :(
G GraceL
GraceL Thanks went to see my stoma nurse she gave me different bag that pushes the skin down to make the stoma set out from the skin. It also has security ring in the outside to hold it in place. Seems to be working but confidence shook a bit and now have turned into one this people that constantly check the bag. She gave me a barrier to put on skin also which seems to be helping the irritations.i never had an issue with my stoma until now. Also do any of you find that no matter what you sa your... [ more ]
UCWarrior2010 Hi Grace, I am sorry that you are having a hard time with the new stoma. The leaks can really put one down but hang in there. Once you find the right supplies you will not have to deal with leaks. Try to see a good stoma nurse ASAP. I was having some issues with my stoma too and my nurse suggested I start using an adhesive paste along with other stuff and it seems to have fixed the problem. I also use Hollister products and so far they seem to do the job fine. [ more ]
D. Nocerino Yeah I had a big problem with leaks too when I got a loop from an end stoma. My stoma nurse came the next day and gave me different appliance with a riser that was better for loop ileostomies. I even had to customize how I put the adhesive on the flange each change. Best thing you can do is get your stoma nurse asap! There's also a spray and powder that will help heal your skin. I used holister stoma supplies and they're the best! [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
bowel transplant
Holly MHolly M
Spooky They do colon transplants, but almost always as part of a multi-organ transplant; that is to say, it's very doubtful you'd see one by itself. The truth of the matter is, you can live without a colon, even with all the drawbacks. You can't live without a small bowel, or a heart, or at least 1 kidney, etc. The bottom line is, a colon transplant is not medically necessary, therefore it's not a high priority to develop such a surgery. Even if colon transplants were available, there are dozens of... [ more ]
Jan Dollar This is a fairly frequent question. Doubtful that colon transplant will occur, although there are some intestinal transplants that include the colon. That said, the reason it is unlikely is that to be a candidate for intestinal transplant, it has to be life preserving. This means that you cannot tolerate TPN anymore, and your intestines are so dysfunctional that you will die otherwise. The fact is that we can live pretty well without a colon, so it is not likely to be a priority. I suppose... [ more ]
CTBarrister Whose small bowel got used for the transplant? In other words, who was the donor? [ more ]
See all 3 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Retrieval Day
MsSterlMsSterl
jpouch2008 Thanks for replying. No I didnt hyper stimulate - they told me during collection that all looked great. I only had 7 follicles. 4 fertilized and today I go for my transfer of 1 or the 2 embyos that are viable. I see you had your pouch removed. Wow that is my biggest fear - especially with a possible strain like pregnancy. It is very comforting to hear your positive outlook on having it removed. [ more ]
JillM Any chance you have Hyper Stim? I had some pain and symptoms post retrieval on my second fresh cycle and had hyper stim. You should talk to the drs asap - you may be able to postpone transfer a day or two (depending on how many days you are now). I was in a 5 day transfer cycle and we postponed one more day - transfer was successful and my daughter is now 4 1/2. [ more ]
jpouch2008 Did you fing the retrieval difficult? My first IVF cycle (pre-pouch) was so easy. But I am in a lot of pain post retrieval and the nurses don't have any experience with Jpouchers. I am now scared to go ahead with tomorrow's transfer! Any opinions/advice would be appreciated! [ more ]
See all 19 replies...
J-Pouch ForumsWomen's Health & Pregnancy
hydrosalpinx and surgery to disconnect the tube -need some advise /help ?
M meghspd
meghspd RE that I saw did a blood work and I have a low amh <0.20 So he says that I should get pregnant sooner than later coz with Age egg quality will reduce . Also he said that if I am thinking Of taking an ivf route then due to low amh its better to start early As I may not respond well to the stimulation He also suggested freezing eggs as soon as possible then treating hyrdo n then going thru the rest of the process I am having a second opinion on 19th from another Re Coz the one I met is a... [ more ]
commandz If you're having leaking at night, then your discharge should be the same. If it's not the same then I don't think it's the hyrdo's. I don't have side effects from the hormones. Only thing I noticed from the hormones is that how I ususally am during a menstral cycle is was taken up a notch. And yes, the hyro's liquid is toxic. No my doctor didnt mention the increased collection of fluid. We paid out of pocket for the IVF so I understand the concern. But once you get pregnant it's not going... [ more ]
meghspd Thanx a lot ..and I have had similar leaks too mostly at night. But I also have a constant discharge . I donno What that is. I had asked my gynac he said one can have increased discharge with a hydro ..but that is not like water .So not sure why and is that toxic too . Anyways , what you are saying is right that its a chance that one has to take. I also dont want another surgery.I wish this was little bit easy after what we have gone thru . Did you have any side effects from the hormones... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
gas and groin pain
fqfq
Becca67 Thank you [ more ]
TE Marie Welcome to the group Becca67! [ more ]
Becca67 I am new to the forum as well but had to respond to this. YES! I would get total pain/spasm in my groin/whole pelvic floor when my pouch was full. It would send everything into spasm so bad until I would go to the bathroom. Gas made it so much worse. It would radiate into my left butt cheek and down my leg too. After about 2 months now...had my takedown surgery 11/29 they have finally started to subside. My surgeon also prescribed some Levsin which seemed to help quite a bit. [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Worried about getting end ileo
I ISeeUC
chiromancer Glad to here it worked out for you. I also have been very happy with my pouch excision and end ileo done in mid Dec. Have regained most of my strength and energy. It is great not to have to deal with the poor functioning pouch. [ more ]
JillM Woot Woot! Good for you. Glad you are doing well. Wait till you are 6 months out, you won't believe how good you feel! [ more ]
n/a Yes - thank you for posting your positive update, ISeeUC - so glad to hear you are doing well! [ more ]
See all 21 replies...
J-Pouch ForumsHelp! Need advice now!
Normal discharge post colectomy or is this UC flare?
P Pluot
Pluot Thanks guys! I had some mucus with a little blood in the morning two days in a row but nothing since then... fingers crossed [ more ]
dawn58 Totally normal [ more ]
beucfree It is normal, but too much blood could be of concern. Since you got cold so close to your surgery and if you were heavily sneezing and coughing, you may want to call into your surgeon to make sure all is okay. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
anyone in middle east??? plus 3 years + j pocuhers?
A L IA L I
CTBarrister Poster Hichick is from Israel, has a J pouch and has done fairly well with it although I believe he is treating pouchitis with antibiotics. Not sure of what his exact medical regimen is at this time. I have had a J Pouch 20 years and although I have to take quite a few meds to control chronic "simmering" pouchitis, I am doing well. Flagyl is in my reigmen, along with cipro which I rotate with xifaxin and augmentin. I also take entocort (Budesonide) and pentasa and I get scoped annually per... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
1 Year Anniversary
Holly MHolly M
kathy smith Congratulations Holly! kathy [ more ]
grandmaof1 My one year from my first surgery was January 27th. I so agree 2012 was something else. My take down was March 16th so I have one more anniversary coming up. How are you doing? I still have diarrhea and it seems now every time I have to pee I have to poo to. I guess at least I am not blocked and never have been. I have good days and bad days. I am still on a lot of medicine. I love Levsin/sl. But what I hate the most is how tired I am all the time. I am on vitamins. But at least I am alive... [ more ]
TE Marie Congratulations! Happy pouch birthday, don't you feel like you should get a purple heart or some kind of award for making it through the first year? I sure did. Our reward is that hopefully the worst is behind us [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Learned today I have a stricture. But should I care?
K Kia
Jan Dollar I suppose that stricture could be causing more problems than you realize. If it is tight enough, it could be causing retention of stool, the cuffitis, and even pouchitis. These can contribute to your incontinence. So, if you get that stricture dilated, things can improve in general. It won't undo the birth trauma issues, but every little bit can help you manage. Fingers crossed that this is an issue for you and that it can be resolved. Jan [ more ]
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J-Pouch ForumsOstomy & Skin
Average # of Empties per Day?
Lynne2Lynne2
ISeeUC I empty 5-6 times a day, including once at night, and "burp" the bag once or twice. [ more ]
JillM Widely varies based on what I eat, if I use Immodium, if I"m really busy. Generally maybe 4-6 times a day. But if I take Immodium and am busy, I can go 6 hours or more without emptying. It was more in the beginning. Over time I noticed it became less. But really, with how much I drink to stay hydrated, I pee a lot, and if I'm already in the bathroom, I usually just empty whatever is in the bag then. So I don't really pay attention... [ more ]
WinniethePooh 6-8 But I could wait longer sometimes before I empty. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Tricare Insurance
Akk3769Akk3769
hfc Check with your Tricare benefits advisor. With recent congressional actions on deficits (or lack or action), tricare has gotten quite difficult with authorizing followup with specialists out side of the military system or their preferred providers. You need to research this before assuming Tricare will pay for CCF specialists. Check with your CCF specialist. They should be able to help you [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Surgery Scheduled in 1 month
MO Mike O
Mike O Thanks UC Warrior, very helpful post. Best of luck to you in your recovery. [ more ]
Rick822 Have you checked into Fecal Microbiota transplant. It may save the colon. [ more ]
UCWarrior2010 I am in the process of getting a j-pouch. I had the first of my two surgeries that involved creating the j-pouch and a temporary loop ileostomy about 3 weeks back. Though I am still recovering from the surgery, which by the way is a very major surgery. Slowly I am gaining my strength and stamina back and the pains/aches are subsiding. But, I can tell you I am already feeling better than I have felt in years. I only had UC for 2.5 years but those 2.5 years were brutal. I never went into... [ more ]
See all 6 replies...
J-Pouch ForumsOstomy & Skin
chiropractor
I itsnotsherry
skn69 Itsnotsherry, It would seem normal that it is on the opposite side of the ileo..we tend to compensate with the oposite side of whatever hurts to help us feel relief... My right hip hurts terribly and my left knee doesn't like it at all (neither does my left ankle)...my problem is sacrolilitis until further tests...and just like for the arthritis you must keep those joints well oiled...walking, swimming, climbing stairs or hills or and repetitive movements that keep the circulation going...I... [ more ]
Jan Dollar It can take up to ten days Or longer for intra-articular steroid injrctions to have a full effect. Plus, they don't always work. I've had those injections in my wrists, elbows, knees, and shoulders. Sometime they are useful. Sometimes not. If inflammmation is not a main component causing the pain, it won't have as much of an effect. Either way, it is not like an instant pain relief, other than the short-lived numbing from the anestheic that is mixed with the steroid. Ideally, it improves... [ more ]
itsnotsherry It seems I have arthritis in my hip and not sciatic nerve issues. They gave me a shot of cortisone in the hip joint, but 5 days later, still no relief! It is the exact opposite side from my ileostomy. This makes me nervous. Could something about my anatomy be causing the pain? [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Lymphoma
skn69skn69
skn69 Thanks Clouseu...I will look into it...am still trying to straiten out the dizziness that I am suffering from and have just gotten my health insurance back...one thing at a time in my life... Sharon ps...dizziness is in no way related to it I hope! [ more ]
clouseau Sorry I spelled the web site wrong, www.lymphomasurvival.com [ more ]
clouseau Sharon, I have spent over 150 hours on research on follicular lymphoma and am part of a worldwide site that specializes in it. I have seen some of the top follicular MD's in the country so please let me know if I can help at all. The web site which I spent time on is similar to this one and is www.lyphomasurvival.com and membership is $35, best deal in town, I have followed almost all the primary persons recommendations and diet espectially which is crucial. It is the primary worldwide site... [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
Cuff spasming
M magsroo
magsroo Thanks Jan. I had already picked up the Nitro Bid before I read your comment. I decided to give it a try and boy do I agree with everyone. It burned like crazy! It helped that others had mentioned that it burned for 5 minutes and then stopped because that's exactly what it did. I also was very lightheaded and found that I need to lay down immediately after. But, when I went to have a bowel movement a few hours later, it was the first time in years that I wasn't in pain afterwards. I was so... [ more ]
Jan Dollar Nitroglycerine (NTG) is pretty "old school" because of the terrible headaches it causes. Most docs prescribe nifedipine now. Same action (increasing local blood flow), but less likely to cause headaches, and if it does, they are generally less severe. The pain and spasms are due to the fissures, which are in the anal canal, not the rectal cuff. Oral pain meds are pretty much of no use in this case. If you can get them, some people get good relief from B&O suppositories (belladonna and... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Best stuff in Cleveland
N NJK
liz11 considering I have gold member elite status with all of my frequent visit points to CC...!!!!!! here's a few: "Carnegie" for breakfast and lunch. on carnegie avenue downtown right near all the interstates. Just before the Hilton garden inn. Healthy fresh cooked food at half price of au bon pain. great place for stopping after an EUA or outpatient procedure. Great omelletes, fresh salmon sandwiches, and other choices that are easy on the gut. They don't do dinner. There's an italian area... [ more ]
n/a We usually hit Cedarland up: http://www.viewmenu.com/cedarl...nt-3/menu?ref=google . Very busy at lunch, but not-so at dinner. It's easy walking distance, near the Cleveland Clinic campus. [ more ]
LionsPride If your pouch is in good shape do yourself a favor and find one of these. The one in Cleveland Heights isn't that far from CC main campus. http://meltbarandgrilled.com/ The westside market is also amazing if you're a foodie and have access to a kitchen, but it's on the other side of the city. [ more ]
See all 3 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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