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J-Pouch ForumsOstomy & Skin
exercise
I itsnotsherry
JillM No, but they are different. There is a video on line showing how to do it. If you need just light convexity, you can try an eaking with it to give a little lift. The product is super flexible, super low profile. I wish they worked for me. [ more ]
itsnotsherry I am glad to hear that you like them, but sad about the convexity. I use slightly convex wafers. I will give it a try and hope for the best. Are they difficult to put on? [ more ]
JillM I love, love, love the Cymed product but can't use it as I need convexity. I recently tried their wafers again and still can't do it. But you should try them. They will send free samples. [ more ]
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J-Pouch ForumsOstomy & Skin
My flange fell off, help!
EricEric
DMP Try Brava Elastic Barrier Strips or Secuplast Hydro. These are half moon shaped strips that are skin friendly that go on the outside of your flange and skin to help give extra security. They work great. [ more ]
hart155 I second the advice on not using scented soaps. I use hand soap, anti microbial to wash around the site. If I use another soap it always falls off early. [ more ]
dawn58 try coloplast barrier strips [ more ]
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J-Pouch ForumsHelp! Need advice now!
Do not know recipe for stool to come out
K kk
jeane If you have cuffitis or pouchitis, your doctor should treating it. Rectal suppositories can help cuffitis and a course of antibiotics usually work for most of us for pouchitis. At times, we have to be on them longer than we would prefer, but in my case, antibiotics always calm down my pouch and spare my rectum (or my rectal cuff I should say). [ more ]
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J-Pouch ForumsPouchitis
Dosage amount for Pepto Bismol
Pilot DebbyPilot Debby
clz81 I typically take just one Immodium before bed. If needed, sometimes one later afternoon since my frequency is generally up from about 5pm til bedtime. [ more ]
Pilot Debby I do take immodium also but it does not seem that today I need to take it as much. I am truly amazed how much better I feel with just taking a couple pepto bismol pills. I have had my pouch almost 20 years now and had always just taken cipro. How much immodium do you take with the PB? [ more ]
clz81 great to hear!! if you aren't taking immodium, if you take that in between PB doses, that also will help slow things down further. [ more ]
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J-Pouch ForumsGeneral Discussion
Gone Fishing
PSJPSJ
Kline84 That's awesome to hear you had a great time! I find that when in the mountains I am usually more relaxed and stress free and so focused on the hunt that I don't even remember I have a pouch. I am actually headed up to the bighorn mountains tomorrow to snowshoe in for a bear hunt! I can't wait! [ more ]
PSJ Update: I went Nd had a great time. Not one bite for fish but thats OK. I did get really tired trying to keep up but other than that it went great. I did get up in the middle of the night but it was not so bad. I am really glad I went and I would do it again. Actually one of the guys wife has colitis and I was telling him what I went through. Ate tons of venison and drank more than usual but thats what guys in the woods will do Thanks again for l the support, I hope I can give it back on... [ more ]
CTBarrister PSJ- Regarding skunks, the main issue with them apart from getting sprayed if you corner one is that they are known rabies carriers, along with raccoons. One time when I was at UConn at the dairy farm I saw a rabid raccoon which was walking in circles and teetering to keep its balance, as if it was punch-drunk. I contacted the authorities. Don't go near or pet any animals if they are behaving oddly, walking in circles or walking as if drunk as that is a sign of rabies. Let us know how you... [ more ]
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J-Pouch ForumsHelp! Need advice now!
My flange won't stick, help!
EricEric
AyrishGrl I use an Eakin seal and Skin-Tac (http://www.torbot.com/ecom/product/featured/70/). The Skin-Tac has been a god send to me. Once I am all clean and dry I wipe all the way around my stoma then use a blow dryer on low to dry it. Then I slap on an Eakin seal and then my wafer. I hope you can find something that works for you. [ more ]
mainebound It has been almost 10 years, but I remember using 3M Cavilon Barrier Film Wipes to wipe down the skin and make it tacky. Then I used stoma adhesive paste-put in a circle following just inside of the opening on the wafer-make sure the adhesive is about as thick as a pencil. Then, stick everything on, lay down with your hand over the whole deal for five or ten minutes to help warm the wax to your skin so it will stick. I know some people use a ostomy belt to help hold everything in place... [ more ]
rachelraven I'm sure you've used skin prep before. They look like alcohol pads, but they make the skin tacky while creating a barrier. You wash around the stoma only with non-residue soap, let dry, then do the skin prep, let dry, then do your flange with stomahesive paste. I saw you used paste. At work in my ICU, we use something calld Mastisol when we need something to stick, like tape to hold an endotracheal tube. It's liquid, and makes a very tacky area for under the tape or adhesive. It also comes... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Gastroenteritis and jpouch
V ValB
Txgal58 Oh, I forgot to ask, how often do you go? [ more ]
Txgal58 Now why didn't I think of that! I guess initially it might have been because we didn't know how long it would take to do one, much less two. The first time took 1 3/4 hours, the second, about 40 minutes! The nurse found a vein on the back of my forearm! Lol! She said it was big enough to put a pencil in! Do you get anything more than a saline IV? I was disappointed to find out while at my last hydration session, from my nephrologist office, the bloodwork from the day before showed I was low... [ more ]
tammykathleen Hello, I have been doing in-hospital hydration sessions since 4 months after having my surgery, which was 6 years ago. I have a standing order. Without a colon, there is only so much liquid that your body can absorb. Perhaps they can give you more hydration bags in one setting so you can cut down to one session, finance wise? That's what I finally had to do due to the cost. Instead of having 1 bag, I now have 2 bags at a sitting. [ more ]
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J-Pouch ForumsGeneral Discussion
Rash
L Lu31
Lu31 Thanks for the input. Really appreciate it. It's not itchy (or at least yet) and is just sore, so probably just irritation. Sounds kind of crazy, but am starting with using my daughters old diaper cream (i.e. zinc oxide) and if it doesn't inprove in a day or two, then will look at trying one of the yeast infection meds from a drug store (unless it seems i need it sooner). [ more ]
PolypsAplenty I had a yeast infection, I guess trapped moisture can help create them -- at least that's what I understood from my conversation with my RN. In any event, Nystat (sp.?) made it go away. If you suspect it's a yeast infection, might be worth talking to your RN and getting a prescription for that. My symptom was uncontrollable itching and insatiable urge to scratch. Good luck! [ more ]
rachelraven My fave has always been A&D ointment, honestly. If it's not itchy, it might just be irritation vs. yeast, especially if you were going more than usual. It won't hurt to try yeast things, too, but also keep dry if you can. When my daughter was a baby, I found she had good response getting rid of diaper rash with Lansinoh, the lanolin you use when you're nursing, that protects sore breasts. Makes a really good barrier, just don't use if lanolin causes you issues. [ more ]
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J-Pouch ForumsGeneral Discussion
Those who got Jpouch due to Cancer and not due to UC/Chrons
P Pkitty
PolypsAplenty I've got FAP and I'm about three months out, but so far so good with the pouch! [ more ]
guzzunder G'day Pkitty, I have had my j pouch now for around 4 years, lucky I have, had no complications,taken nearly all this time for it to settle. Had rectal cancer, most of rectum and sigmoid colon removed. I Seem to be doing alright, clear so far, next colonoscopy it in 27 days time Regards Bob [ more ]
Jackie R I have j pouch due to cancer and am having issues like bloody stools. In process of diagnosis is I have pouchitis, cuffitis, etc. FIrst scope showed pouch inflamation. Using Cortifoam now, but not helping. getting ready to go back for 2nd scope. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis...how much pepto bismol to take?
Pilot DebbyPilot Debby
Pilot Debby No idea that Pepto Bismol reduces inflammation within the intestine, and may kill the organisms that can cause diarrhea. [ more ]
Pilot Debby Thanks so much Jan! Amazing how just taking Pepto Bismol seemed to quiet things down over night. And yes not having a job and especially no health insurance is not good right now. I am in a tough situation no doubt. [ more ]
Jan Dollar Oh gee, tough break to be without a job and insurance! Basically, I'd follow the instructions on the bottle/package, and adjust to what works for you. Couple of things though. I'd go with the pills over the liquid or chewable to avoid getting a black tongue. Also, once you figure out what your total daily dose should be, try to space it out evenly throughout the day, so the level is more or less constant. The instructions are more for acute diarrhea and tell you to take it after loose... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Fecel Fat test
winter wishwinter wish
winter wish Hi Finally got results for for fecal fat test, significant steatorrhea (also Vitamin D deficient), but apart from possible Vitamin D intramuscularly didn't say what I can do for the steatorrhea? [ more ]
TE Marie It would be so much better to have a disease of the elbow than the colon.....and this test is one of the very reasons why. I've had to collect my urine for 24 hours several times. It's best if you live in a cold winter area so if it has to be refrigerated you can keep the collections in your garage Hang in there. [ more ]
winter wish Hi Jan They are looking to determine fat malabsorption, and ?pancreatic insufficiency. He did a fecel elastase test also.I am not looking forward to it! [ more ]
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J-Pouch ForumsGeneral Discussion
Lymph Nodes
ManchesterManchester
tammykathleen Manchester, I experience that symptom of having my throat almost forget how to swallow. It comes and goes for me, but it can really freak you out. I've never looked into it or asked my doctor about it, but maybe I will now. [ more ]
Jan Dollar Enlarged lymph nodes can mean a variety of things. Since these are inguinal, it probably has something to do with inflammation or infection somewhere in your pelvic cavity. If you've been troubled with pouchitis, that could do it, but it could also mean there is something else going on down there. It's premature to assume it could be cancer, but I suppose it is possible. But, if it was a major concern, I would suspect your doctor would be having you come in immediately. I think doctors... [ more ]
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J-Pouch ForumsGeneral Discussion
Parents of Kids with a j-pouch
RM Rowans mom
Rowans mom We have 37 parents connected now. It is so much easier to trouble shoot our munchkins with so many different points of views and some veterans some awaiting stage one. I am really happy I was able to find so many other parents! [ more ]
ElmerFudd I hate hearing that he's having so much trouble. It would be concerning to still have nighttime accidents after 10 mos. What does your surgeon say? Our daughter struggled for a month or two with that, about as long as her surgeon said it would. If they used the double-staple technique it can really stretch their bottoms and it takes time for the muscles to strengthen back up. Of course, with the constant pressure it may be something else - cuffitis maybe? Any other symptoms? Steve [ more ]
LilMoe03 I have joined but don't know my way around it yet. Any mothers with kids who have jpouch? It's been 10 months and my son life has changed. He still wakes up with accidents and don't go out or like to walk cause he feels pressure and always has to go. He is home school due to him not feeling ready and it's gonna be a year. Any help or advice? He is on Colestipol. Loperamide and Metamucil. [ more ]
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J-Pouch ForumsGeneral Discussion
3 months since takedown bm's still 20+
B Busting
Holly M My recovery has taken a full year. 3 months out and I was still going about 20 times myself. I still go about 10 times a day now but it is more controllable and it may just be my normal. I do take the probiotic VSL#3DS, I think that helps alot. I used to take imodium and chew gas x tablets like crazy. Now off everything but the VSL. I did a couple of rounds of cipro and a round of flagyl a few months back and that helped. But I would say 3 mths out is still very early. It will get better,... [ more ]
Busting Thank you for the reply, I also don't have uc, I actually have colon cancer, or had, I'm in remmission right now. I've had radiation therapy and chemotherapy, so maybe that may be what's complicating things. I don't know for sure. I am takeing a heaping tablespoon of Metamucil 3 times a day, not with only 4 ounces of water though and I've been drinking after taking it. In going to try that tomorrow and see what happens. I'm going to research this spasmodic pouch as well. Thanks for the... [ more ]
PolypsAplenty Sorry to hear about what you're going through Busting. I'm about the same amount of time out from my take down as you - know it definitely gets rough. I don't think 20+ times is normal for three months out. I was at 20+ times one month out, and my surgeon/surgical team told me that was not normal and basically trouble-shot it with metamucil/immodium (I don't have UC though, so maybe it's different.) I don't have a ton of ideas, but for metamucil, are you taking it 1 tbsp per four ounces of... [ more ]
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J-Pouch ForumsGeneral Discussion
Stroke
Mike ChioleroMike Chiolero
Jan Dollar Basically, if you have risk factors, you need to deal with them: keep your blood pressure, blood sugar, and serum lipids under control. Here's a link for info on prevention and symptoms: http://www.stroke.org/site/Pag...ver?pagename=prevent Jan [ more ]
Allison Just curious what your pain felt like in your side and how long it lasted. How did you know you were having a stroke. Can you give more detail? [ more ]
CeeeeCeeee I just learned something new and I'm not so sure I'm glad I did! So.....is there anything we can do to prevent strokes? My father had a series of them. The final one killed him. I have diabetes, hypertension and IBD! Also, on medication for the first two and no longer take medication for IBD now that I have a J-pouch! Also take a baby aspirin a day. I don't eat meat very often. If I do it is chicken or fish. I do like eggs. Hmmmmm! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Constant draining from wound
R rsz
Caty It truly is a small world... Love living in Merritt Island. Moved down in 1997. Caty [ more ]
rsz Grew up on Merritt Island, went to Tropical elementary, Jefferson Jr high, and MIHS just sold my house in Titusville and I'm temporarily renting the house that I grew up in on Merritt Island. [ more ]
Caty I know how long that drive can be. I live in Merritt Island, FL. I usually get a hotel room after my appointments and drive back the next day. You'll feel much better now that the stitches are out. Every day it will get better. Caty [ more ]
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J-Pouch ForumsPouchitis
Pouchitis but don't want to take antibiotics
A Allison
Allison Not sure if I'm the one who can answer these best. For me, I take liquid pepto at night. It seems to calm things down and I don't go to the bathroom as much during the night. I take fiber in the morning with my juice. This bulks things up for the day and might help your "runs". As far as VSL, I don't think it matters how you take it or when. But for me, if this doesn't stop the diarrhea, that seems to mean pouchitis. If you don't like cipro maybe your dr. will try flagyl. Sounds like you... [ more ]
grandmaof1 What does Pepto Bismol do? How should you take VSL 3? I have some and I just went off my cipro that I was on for over a year. I sure feel like I have pouchitis but I don't want to go back on cipro. I am so loss. Sounds like I should. I hate flagyl. I didn't do anything for me. Any help would be great. Should I try pepto and VSL3 before I eat or after. Also, when should fiber we taken before or after you eat? I am so at a loss with all this medicine. But I have the runs so darn bad. That is... [ more ]
Allison Yes, thank you so much Jan. [ more ]
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J-Pouch ForumsGeneral Discussion
Way forward, need some advice
S Salmak
CeeeeCeeee My j-pouch (12 years old now) doesn't mind alcohol. What it does mind are double shots of espresso and I almost prefer espresso to alcohol! As long as I know to expect the after effects of consuming espresso drinks, I usually don't do so often but I do go for it anyway! I just go prepared! To me, it is worth it! [ more ]
mad hatter Im like clock work in the morning and depending what Im doing I usually get in one or two before noon. But the thing I like most is that unlike UC I go when I want to and not when my disease makes me. As for booze I like my beer, wine and scotch and I know that I will pay a price if I over do any of them. [ more ]
rachelraven I'm pretty slow in the morning these days. Sometimes I don't go til maybe 11am, sometimes I go once on awakening. Depends what I eat the night before, but I generally don't eat after 7pm (that's just me... I can, I just don't). I go most in the evening. Maybe 1-3 times before bed, always able to be deferred. I'm two decades in, though... so my pouch is able to hold more. But I was 19, remember, when I had it done. I started nursing school 4 months post takedown, and commuted to school, and I... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
mirena side effects
S shawanna24
rachelraven I had the Mirena briefly, but hated it for other reasons (I'm super sensitive to hormones). But it never affected my pouch, though we're all different. They tell you it's " local hormone therapy," but it was more than that for me. Got it pulled and felt better in 3 days. Maybe the hormones are doing something to you? [ more ]
tammykathleen Hi Shawanna I've had the Mirena for 3 years now and I never had any worse of an issue after I had it implanted, but that's just me. It is much easier for me not having any period which caused alot of hormonal flares. I would give it a week and if it's still worse, maybe it's a pouchitis flare? Try some cipro? I hope you feel better soon! ~Tammy [ more ]
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J-Pouch ForumsGeneral Discussion
Update on outlet narrowing, perianal fistula, and seton drain.
rachelravenrachelraven
rachelraven I'm glad you did well with a one step J pouch. My surgeon said he did 72 one steps in the 90s and people had way more issues with it, so he only does two step ones again (though most are laparoscopic; mine was in 1991, and two step with a big open incision.) [ more ]
Subsky The incision definitely affected my outer sphincter muscle slightly, the scar tissue is probably 4mm wide. Doesn't affect my control at all though. I didn't have a diverting ileo while it healed, so it was a long, painful process. All the sitz baths with epsom salts. My jpouch surgery was also only a one step surgery, with the j-pouch creation and hook up in one go. [ more ]
rachelraven Subsky, I can't pin him down on a timeframe for this, but I think where mine is, though common, could risk a sphincter. I think that's his hesitation for giving me a "longer" term plan and wanting the seton in there to chill things out. But I can't live with a rubber drain, however small, in my butt forever! [ more ]
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J-Pouch ForumsHelp! Need advice now!
New J-Pouch and constipation??!!??
U UCWarrior2010
kta I cannot take Immodium as it constipated me and sucked all the moisture out of my body. Metameucil made me sick, so that was out too. I agree on drinking lots of water. Also, for me, the constant going and/or urge was definitely part of the adjustment. As my body adjusted, I lost the non stop urge and was able to hold it when I did feel the need to go. This will all pass and in no time you'll be giving the advice. [ more ]
PippiThePirate Oh I remember the first few weeks after getting my JPouch! Went through the same thing as you. Actually took a good 6 months to a year before I was fully adjusted. It's such a shock to your system that it takes awhile to become normal/regular. And I second the pooping positions. I'm a gold medalist on the throne. [ more ]
UCWarrior2010 Thanks, Rachel! I am now eating a little more variety of foods so I am hoping it gets better. I am not even two weeks from takedown but I am only going 7-8times in a day and buttburn has not been an issue so far. It's just tat I am not pooping much when I go each time and when I am done I still feel I have to go again. It reminds me of te feeling of incontinence during the UC days! I am hoping that this just a part of the adjustment and soon it will be resolved! I am yet to discover my... [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone taking Humira?
P PamShea
Jan Dollar Quite true! All the more reason the prescribing doctor needs a thorough history, to be sure there is proper monitoring. Jan [ more ]
Bogey My point in posting my previous comment was to caution others based on my experience. My use of the term "Heart Failure" over "Heart Attack" in my original post was incorrect, however heart attack is listed as an "Infrequent side effect" of Humira SubQ. As I said if you have risk factors such as high cholesterol or a family history of heart attacks etc. it is certainly worth bringing up with your doctor before starting Humira. [ more ]
RLC Thank you PamShea and Lucy...! All the information that I receive is better than none at all. I am not sure of what my future is but it certainly has got to get better! Roberta [ more ]
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J-Pouch ForumsHelp! Need advice now!
Catheter and Self Dilation
T TamaraGutlessWonder
rachelraven We use Flexi-Seals on incontinent/liquid stool patients in the ICU, but they stay in for 28 days and would never work on a normal person. Maybe a red rubber catheter to drain? [ more ]
vanessavy I use a catheter to drain my pouch but I do not have a jpouch so not sure how this works. Are they talking about putting a foley up there? [ more ]
rachelraven Wow. I'm so sorry you've had so many issues. I almost think I'd just beg for an ostomy. I know that's not helpful of me to say, but even at age 19, with a temporary ileostomy, I thought to myself that if I ever needed one again, I'd just be ok with that. Some folks don't feel that way though, and I respect that. I'm going to be faced with self dilations soon. I *have* used glove/finger and taper to do some mild stretching recently. My CRS might get me a Heger dilator next time I see him. I... [ more ]
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J-Pouch ForumsGeneral Discussion
New j pouch and few questions
G GraceL
rachelraven I never needed Immodium or Lomotil, though I did go more (and more liquidy) in the beginning. It's been 22 years, and I tend to be thicker these days. But I eat a pretty normal diet. Over the years though, I used to eat all of them but had to cut these out recently: popcorn, nuts, mushrooms, and quinoa almost KILLED me couldn't get it out!) lol. But. I did develop narrowing, so maybe that's to blame for a lot of it. Oh, and I honeymooned 15 years ago in Ireland. Your country is lovely. We... [ more ]
UCWarrior2010 I quite like having the jpouch. I am still getting used to it and dealing with some issues like feeling that I haven't emptied the pouch entirely and butt burn so it reminds me of my UC days a bit. But, I keep telling myself to be patient and realize that it is not even 3 weeks since takedown (it will be 3 weeks tomorrow!!). I also blame a bit of my dissatisfaction to the wonderful time I had with the ileostomy. I only had a loop ileostomy and the three months with it were pretty good. Never... [ more ]
GraceL Hey kabgaroe thanks for the link I did miss it good to see a long time poucher that's always a good sign. [ more ]
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J-Pouch ForumsGeneral Discussion
Still pain when I push my abdomen after colectomy
I Ikh
Ikh I forgot I asked this question... Well no, luckily I never had peritonitis; there's a sort of inflamation called perivisceritis (google it) which I was found to have according my latest ecography six months ago. However it's probably a marginal problem, I don't have issues apart I find some pain where I push (where there were the colon above all) [ more ]
Jan Dollar Are you talking about peritonitis? This is ageneralized inflammation of the abdomen, usually caused by bacteria leaking into the abdomen, such as when you have a perforated bowel. Sometimes there is unavoidable spillage during surgery. They try to flush it all out, but it can be hidden, later causing infection. The worst thing is that peritonitis is a leading cause of problematic adhesions (internal scar tissue). Not much you can about it other than hope these adhesions relax over time. [ more ]
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J-Pouch ForumsGeneral Discussion
Dr. Retired can't get a script for VSL without an appointment
MB Mountain Baker
Spooky I understand your frustration, but since you're going to need a new GI anyway, why not make an appointment to meet with the doctor and establish a contact/relationship? If the wait to the appointment is going to be longer than your prescription runs for, perhaps the admin staff can have the new doctor forward you a temporary prescription that would cover you to the appointment, in good faith. You may even find that the doctor would be more willing to write you a prescription once you have an... [ more ]
Scott F Is there a closer GI you can establish a relationship with? If your doctor is too far away for you to reasonably have an appointment without great hardship, that's not so good for anyone. And of course they should renew your VSL to tide you over, but if you won't make an appointment a doctor you've never met will be reluctant to take care of you. [ more ]
vanessavy It is normal to meet with a new doctor that takes over. I have to check in with my current doctors every 3-6 months if they are giving me scripts for anything. If you need VSL for the immediate it can be ordered off their site. Just have to double up to make it the prescription strength. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Pregnant and nervous
HG helen garner
Patricia Walker Hello I have not got around to reading all the posts yet. I live in the UK Whitby N Yorks. I had my surgery for K pouch when I was 29 years. I had my son at the age of 40. not much known here then about my surgery but all went well. Had a super baby boy 7lb 6ozs. Pregnancy went fine. Normal birth (well forcepts). Just had problems after the birth due to coping with catheter etc., My son is now 26 and has had really good health and I have so much to be thankful for. Please try not to worry. [ more ]
helen garner Hi Sarah, I'm doing okay thank you how are you? Not long to go ) I'm trying to stop being a hypochondriac haha. It's really frustrating as I don't know what's normal and what's not, and obviously 'normal' is going to be different with a pouch too. The twingy pain I was having on my left side sort of subsided but I ended up having a blockage on Wednesday. My pouch just stopped being able to function. I'd actually forgotten what that was like to not be able to go! And I had quite a bit of abdo... [ more ]
Sarahbp55 Helen, hope you're ok? X [ more ]
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J-Pouch ForumsGeneral Discussion
How to find a biofeedback specialist in OR/WA/Northern CA?
LorsallLorsall
beckysmom Please let me know how you make out. My daughter is starting biofeedback tomorrow for constant pelvic pain. She has had every test, scope and the only thing that she was told is that she has sharp angles in her intestines. She can't function on the med for the pain so she is trying biofeedback. We just did a search online for biofeedback where she is at college. Hope you find someone and it works for you. My daughter is at the end of her rope. [ more ]
suebear I worked with a rectal physical therapist in Los Angeles. Two visits and many exercise variations later, she fixed my problem. They are very hard to find but try going to a regular PA just to access their glossary of PAs in the country by specialty. Sue [ more ]
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J-Pouch ForumsOstomy & Skin
How much is too much?
EricEric
Lynne2 So glad to hear you're feeling well enough to go for a walk! But 10k?! Eeek! It sounds like you've found a great solution with driving to the park and walking a shorter distance when you're there. I completely understand the desire to get out there and live life with your renewed health, but please listen to Jill's advice. We would be sad to see you take a step backward in your recovery because you rushed things. Take care of yourself and enjoy the sunshine. [ more ]
Eric I'd love to do that, and Toronto is on the water front (Lake Ontario), but with so many ships and power craft in the harbour I wouldn't take the risk (a good friend of mine rented a canoe, went out into the harbour, and got swamped by a ferry, sunk the canoe). I've actually found the solution, we have many beautiful parks here, so I drive to the park, and go for a short walk, my favourite being High Park (http://en.wikipedia.org/wiki/High_Park), its just about time to see the cherry... [ more ]
vanessavy Kayak, canoe? That is less stress on the lower portion of the body. [ more ]
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J-Pouch ForumsGeneral Discussion
Does it take you longer to get over colds?
TE MarieTE Marie
Kia No, aside from UC and subsequent pouch complications, I have been very fortunate. [ more ]
rachelraven No. But I did get sick a lot as a child, and then got UC at age 11 and kept that up. I think I must've gotten partial immunity to every virus out there, as many flus and colds as I had growing up! After my first few years in nursing, when I did get sick more, now, it's much rarer for me than ever in my life. [ more ]
TE Marie I hear you suebear. I had the pneumonia vaccination years ago so thought I was ok. Last time I had it I was 17. I had to research it and found out it doesn't cover every kind of pneumonia..... I'm taking OTC Guaifenesin expectorant and it helps. [ more ]
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J-Pouch ForumsPouchitis
Bloody Pouchitis
CB CLAUD B
TE Marie I'm glad you stopped bleeding. 7.8 is low. I hope you lay low this weekend. Please let us know how the tests turn out. [ more ]
CLAUD B I had a scope done two days ago. its not pouchitis or cuffitis..surgeon took a biopsy wont know until monday. He saw an are that looks abnormal and may be the cause if the bleeding...he does not want to speculate what it can be..i just have to wait. bleeding stopped..now im at 7.8,really anemic,super fatigued. [ more ]
TE Marie Cuffitis has the same symptoms as pouchitis but cuffitis has bleeding and pouchitis does not. Only people that have UC can get cuffitis. Most operations these days are the double stapled procedure. They leave approx. 2 cm of the rectum attached to the rectal stump when removing the colon and the rectum. They attach the newly constructed the j-pouch to this 2 cm. This is done to help us have maximum control over our sphincter muscles. Those of us with UC can also get UC in those 2 cm and they... [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Seton drain advice for a J poucher?
rachelravenrachelraven
rachelraven Well, mine is right on the anus. To the right side. I did have an ER drainage of "the bump" but the way they diagnosed my fistula was with a pelvic MRI. I had a draining seton placed for it, and it really helped, but it broke at an office appt, and I have to have another placed 4/29. They can "drain" an abscess and not put a seton in, but the seton kept mine from doing a drain/burst cycle and made the pain nonexistent. My fistula/abscess wasn't anywhere near the anastamosis or J pouch, it is... [ more ]
Jpoucher4life So, I went to my surgeon today and I do have some sort of abcess /infection He said he didn't know for sure if it was an in fected bartholin gland or a abcess that could br an indicator of crohns!? He wants to drain it and he said he will be able to tell then whether its pouch related or coming from the vaginal area. Is this the same kind of drain that you have Rachel? I'm really worried this is a sign of crohns [ more ]
rachelraven He's says no abscess, but is that just by looking only? Would he consider the MRI, to look for a fistula? When I had my MRI, it read as "no abscess," but I still had a bump on the perianal area that would cycle and burst. Still sounds sort of fishy to me. I'm allergic to Flagyl. When they were unsure of what my issue was, they stuck me on Cipro and Clindamycin, but they did nothing for the perianal bump. The Cipro slowed down my bowels, though. After the seton, I did a week of Cipro, and my... [ more ]
See all 23 replies...
J-Pouch ForumsPouchitis
Fish oil / activated charcoal
A Allison
Bodoni I take fish oil capsules, 2 per day. My doc says that latest studies show that there is no evidence they help the heart. He told me to continue to take them. But added, they may not help at all, but they can't hurt either. [ more ]
Scott F I take 1200 mg of Fish Oil once daily. I have no idea if it does a darn thing. I wouldn't take the charcoal without a good reason. [ more ]
Jan Dollar I take fish oil, 1000mg three times a day, and have done so for years, for a variety of reasons. One, it is known to help lower serum triglycerides (I have a family history of heart disease). Two, it is thought to be helpful for arthritis and dry eye syndrome (I have both). It is also supposed to be good for the gut. I'm not sure it has done any of those things for me, since I still have to take a statin, am taking heavy duty drugs for arthritis, and dry eye (even had my tear ducts plugged),... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Accidents at night
F FXT
Kia Glad you are doing much better! My pouch is about 23 years old and I am now on a regular course of Immodium. You can actually take quite a lot, if needed. I was having leakage issues about a week or so ago and the GI said to up the Immodium from 2 tabs/3-4 times a day to 2 tabs/4-6 times a day. I sometimes lose track trying to keep up with that many doses, esp btw meals. But I've learned I absolutely must keep it at a minimum of 4 times a day. If I think of it, I get to 5-6 times. I find the... [ more ]
FXT Update... No accidents at night since I started with the Immodium. Woke up once as I was passing gas and was looking for the toilet in my dream (weird I know). Ive relied a bit more on Immodium to get my system in check as I started work this week. Almost 4 weeks out and Im now going 3-5 times during the day and 1-3 at night. Surgeon has me set up with a CT on Monday with the radiology department. Im guessing there might be some abscess draining involved and possibly a drain inserted. Also... [ more ]
Manchester Immodium plays hell with my pouch. It is great for stopping BM's but then after a while it doesn't allow full emptying of pouch. I find Codeine to be much much better. Slows things down whilst still allowing pouch emptying and keeps pain at bay. [ more ]
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
Anemia Problems (irriated mouth-tongue, dizzyness, headache, fatigue)
SmoothDouglasSmoothDouglas
rachelraven Maybe you supplemented yourself out of the anemia? If it started a few weeks ago w/the tongue thing, maybe it was enough time? I hope the CT gives a definitive answer! Keep us posted, I'm curious now... [ more ]
SmoothDouglas I just got back from my Doctor's Office. My Blood Work Looks FANTASTIC (although a bit high in B12 because I've been eating them like candy). So, I don't think the issues were with Anemia. My mouth is almost completely non-sore now and my blood tests don't show any indications of Cancer. I have had a headache the last few days and a gland on my neck swelled up and was painful yesterday. It's good today. My Doctor thinks that my issues with my Lymph Nodes may very well be caused by an Sinus... [ more ]
rachelraven Anyone can get systemic yeast infections. That's through the body, not like a vaginal yeast infection. [ more ]
See all 14 replies...
J-Pouch ForumsHelp! Need advice now!
Son has F.A.P, advice
L LilMoe03
vanessavy FAP is rough. Feel free to PM me. I am a lot older though. Besides a temp ostomy a continent ileostomy could also help in terms of another option. I have a love/hate relationship with mine but would take it over other things. I go to the bathroom maybe 2-3 times a day. If I have c.diff or some other nonsense maybe 5 times. [ more ]
Jan Dollar Since pouchitis has been ruled out, I would suspect this is IPS (irritable pouch syndrome), essentially the same as IBS. The treatment is the same, low dose tricyclic antidepressants and/or antispasmodics. However, in a pediatric patients I am not sure what the protocol might be. Certainly, anxiety is a big factor, although I am unsure how psychiatric treatment would help. Presumably this would be a pediatric therapist and he would find someone he can connect to and discuss his fears and... [ more ]
PippiThePirate I'm so sorry to hear about what your son is going through. I was always in the bathroom growing up and it wasn't until I was 18 that I was diagnosed with FAP. If you have any questions or just need someone to talk to (or your son) please don't hesitate to PM me. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Surgeon or gastroenterologist
LaneyLoveLaneyLove
Jan Dollar I haven't seen my surgeon in over 15 years. The reason? I have not had any surgical issues in that much time, only medical issues that are handled by my GI. I have seen a surgeon for other things, but not j-pouch related. Jan [ more ]
n/a I saw my surgeon for many years; in reality, should have been seeing a gastroenterologist, as my surgeon was not skilled/aggressive with dealing with pouchitis, cuffitis, etc. However, as you say, for sphincter or other non-medical issues, your surgeon is the one to see. [ more ]
mgmt10 My surgeon told me at any time if I think I need to see him to just call and make an appt. I haven't seen my GI doc in 3 years. Luckily I have had very few problems. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Dietary Needs for JPouchers
D DeathStalker
rachelraven Until recently, I ate whatever I wanted and was fine. Recently, two decades in, I have to be a little more careful with nuts, seeds, high fiber, and certain raw foods. I think most people in general don't drink enough... I find I don't generally feel dehydrated as a J poucher, and I don't do anything majorly special, but if I get ill, esp. with a GI bug, I CAN dehydrate much faster than a normal person, and often need IV fluids in those moments. I've never been consistently dependent on... [ more ]
mgmt10 I don't do anything special either with the exception of a greek yogurt everyday like you do. I don't even drink that much and I have no issues with dehydration. I know you mentioned you put on some weight so maybe just try and cut your sugar intake and carb intake and I bet you will lose. Along with some exercise of course. I gained an extra 15 pounds back after my takedown and last summer I cut out all sugar (that's my weakness) and hit the treadmill and the 15 pounds came right off. I... [ more ]
Epic Scotsman Most nutrients are absorbed in the small intestine, so the colon being gone shouldn't impact nutrition too horribly much. That being said, certain things are absorbed by the colon, such as vitamin B, sodium, and fluids. As the small intestinal tissue adapts to it's new role, it will probably start picking up the slack. Of course, nutrition is a very individual thing. I'm sure there are plenty of people on these forums that, if they ate like I do, would be miserable. If you're worried that... [ more ]
See all 5 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Lack of menstrual cycle (since 2010)
K kvan
Jan Dollar Sometimes the trauma of surgery causes a premature menopause, and sometimes it is permanent. This is especially true if you are chronically ill or anemic. As to the bleeding/bruising issue, a first step is a full coagulation anel to see if something is missing. Rarely, this can be a sign of liver or bone marrow disease, so it is important to get this checked out. Jan [ more ]
PoucherInTO Hi kvan, I PM'd you! [ more ]
kvan I have not. I went to my family Dr Tuesday, she seemed to have no answers for the lack of menstrual cycles but did refer me to a vascular surgeon for the veins. I do not care what they look like though my issue is why are they bleeding? hopefully this doctor will provide some insight. She also said I may have a bleeding stomach ulcer. I now am sick with something, either pouchitis or food poisoning.. I don't think it is pouchitis because I am 23 days through a 30 day regimen of flagyl. sorry... [ more ]
See all 4 replies...
J-Pouch ForumsPouchitis
What exactly is refractory/chronic pouchitis, really??
wazzou2wazzou2
Jan Dollar Actually, I believe that chronic refractory pouchitis is more akin to IBD than to what you are thinking about small intestine bacterial overgrowth. The difference is that with the SIBO, there is not the tell-tale infamed pouch that you see with pouchitis. Symptoms can be similar though, and so is the treatment. This is also why sometimes drugs like steroids, 5-ASAs, biologics, etc. are also used to treat refractory pouchitis. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3093723/... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Can Not Stop Pooping!!
creepnjeepcreepnjeep
Epic Scotsman Metamucil wafers are like magic. [ more ]
Scott F I started on Metamucil as soon as I left the hospital. I think it helps with the stool consistency. [ more ]
Jenmystique I'm just two months out from takedown. I don't know much about spastic pouch so I can't say that is or is not what may be happening. I do know I still have lots of pain and cramping when I'm "holding" to get to bathroom. I do "hold" frequently because I was told that I need to 'teach' the pouch how to work just as much as my body is catching on to this new thing. One thing that was suggested to me was to "hold" so that the pouch stretches and learns to hold more poop and end up with less... [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Always Appear Bloated & Weight gain?
D DeathStalker
DeathStalker Yeah, I definitely don't drink enough water and my carb intake is super high. So hard to resist. Before the surgery, I never had this issue with putting on weight but now, it's another story I don't take probiotics anymore but I do eat a Chobani every day for breakfast and I find that helps keep things regular. I've been one of the lucky ones who normally only needs to use the restroom 3 times per day (one before work, once around 4:30, and then not again until right before going to bed), so... [ more ]
Spooky Your abdomens do change after surgery, despite what the surgeon might tell you going in. My stomach also slightly concave, with a hollow in the area where the colon was, though this is much more noticeable when I'm lying down. It also dents in a bit at the stoma site, though this is more noticeable form a "top down" view (i.e. looking down at my own stomach) rather than when I'm standing. That being said, you don't mention if you're taking probiotics; you might want to start if you are not... [ more ]
n/a Hi Deathstalker - I've always been thin, pre- and post-surgery, but have had problems with a bloated looking stomach, not to mention the surgical hills and valleys. However, I recently cut back on carbs which I've always been so addicted to - and it's amazing how the bloating has gone down. Something to consider? [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Bacterial Overgrowth
L liz11
vanessavy Sugar is the culprit to it. Shen diagnosed mine at Cleveland CLinic. There are a lot of recipes and cookbooks out there for small bowel bacteria overgrowth. Mainly just sugar, but sugar is in everything. The minute I went gluten free and sugar free I was off antibiotics. It can take a year for it to really work it self out. For me after a week it is a drastic difference. Processed foods also are very bad for it. Pinterest if you follow it has great recipes for small bowel bacteria... [ more ]
liz11 no breath test. Just think it was a process of elimination diagnosis. And also confirmed by the fact that xifaxan has made a huge difference. I have only read about xifaxan for sibo. So Liz, please share what else you found. My luck, its probably one of the other 7 or so antibiotics I'm allergic to that they might recommend. As for the adhesions, I don't think they show up on a MRI. But regardless, even if they did, nothing can be done about it, unless you just operate again and cause more... [ more ]
Pluot I was diagnosed with SIBO last year... did you do a breath test to confirm? Xifaxan was the only treatment offered to me. We never really explored it further because my GI's theory was that the SIBO was aggravating my UC, but Xifaxan didn't improve the rest of my symptoms so we kind of stopped exploring that avenue. From what I've read online Xifaxan might not be the antibiotic of choice for SIBO anymore. Unfortunately my understanding is that diet based interventions for SIBO don't need to... [ 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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