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J-Pouch ForumsGeneral Discussion
Getting a J-Pouch when UC under control?
BostonianBostonian
Bostonian Originally Posted by aka KNKLHEAD: I had terrible colitis from age 16, finally subsided into my 30s with steady dose of Pentasa for many years -- felt so well that I neglected colonoscopies until I turned 40 and lo and behold, nice big cancerous tumor in the colon. (I had just gotten my Black Belt in Taekwondo -- so it really snuck up on me!) I have been doing the regular colonoscopies the entire 20+ years, so nothing is sneaking up on me. I had my consult with the colorectal surgeon this... [ more ]
aka KNKLHEAD I struggled with lots of surgeries to finally get my J-pouch "right" at Cleveland Clinic. I now have a very well-behaved pouch, 4-6 bathroom trips per day, and much more often lately, sleeping through the night. (My takedown was in August.) I feel super, but don't overlook the "lots of surgeries" part! If you go for it, I'd be extremely picky, if you can be, for a surgeon with many, many, many J-pouch surgeries under his/her belt! I had terrible colitis from age 16, finally subsided into my... [ more ]
hjd Hi, I got my J-pouch in 2000 in the Mayo clinic, Rochester MN. I was advised to have the colon go because I was using medication for too long (prednison since 1982) and because I had a 30% chance of coloncancer in the next 10 years. I had two stage surgery, with the takedown 5 months later. The first surgery is a big one. I made sure I was as healthy as I could get (including going to the gym every other day for four months, something I hate with a passion). It all worked out very well. I... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Post surgery woes
C cajunb
redl Hello I use a cream called Gold bond it may burn a bit at first, but I find it helps to heel it faster, and believe me I have tried it all. Also I have started taking iron every day and that really helps. Metamucil works well, but you must keep taking it. One thing helps me more than anything is walking the dog, about 5 miles a day. I have a Border Collie so I can walk him as much as I like, and he will still look for more. Had my J pouch 1 and a half years now, and still finding out new... [ more ]
JLH Part of the pelvic floor exercises is developing a good core. Perhaps you already have that. I didn't and it took months and months of core exercises to get back where I should have been. The advantage of pelvic floor PT is that they do biofeedback But if you can do it on your own that is much better, in my opinion. I can go in more detail if you wish Zinc oxide aggravated my butt problems. What worked for me was a brand called Critic Aid and it is a clear Barrier moisture ointment But as we... [ more ]
cajunb I've already taken each bit of advice. I added immodium into my routine today and have been liberally using zinc oxide (and a sitz bath) which seems to be helping. I didn't know about pelvic floor exercises, but now that I do I'll start doing them every day. Thank you for your suggestions. Now I'll take that deep breath and hope it will pass! [ more ]
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J-Pouch ForumsGeneral Discussion
Meds..
U UCBloke
Jan Dollar I would call, or email if you can, with the new symptom of rectal bleeding. This is a sign of cuffitis (common) or possibly pouchitis (less common). Mesalamine or hydrocortisone suppositories are the treatment for cuffitis. This is beyond the help of VSL#3 or other probiotics. They are for prevention, not treatment. You should not have to wait months to get treated. Of course, I know that in the UK things are often not as simple as getting a prescription over the phone. Please also tell them... [ more ]
UCBloke Thanks for the reply Jan, I've another few months to wait to go back to hospital for follow up. Just this evening I've spotted blood in my stool ��.. I stopped taking the codeine, was causing headaches, and I didn't want the addiction!. I need to keep eating as I'm losing too much weight. I will battle on until my appointment as my local GP haven't a clue what to do, they just ask me to wait until my appointment. VSL has been discontinued also in the uk (Ireland) and there is no replacement ... [ more ]
Jan Dollar The other options after loperamide and lomotil are opiates (codeine, paragoric). Seems rather odd that the lomotil equivalent would be discontinued in the UK. One other option for unrelenting diarrhea is Sandostatin injections. But, it is quite expensive and usually used for those with gastric cancers. I would not be surprised if its use was highly restricted in the UK. Of course, none of these will work if you have an underlying, untreated issue, such as pouchitis, bacterial overgrowth,... [ more ]
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J-Pouch ForumsGeneral Discussion
Pumpkin pie
U UjohnjC
Spooky Sure you can! Everything in moderation. Enjoy! [ more ]
mgmt10 I just had a big piece with cool whip. Sooooo good!! Enjoy! [ more ]
CTBarrister My father told me he follows Libby's pumpkin pie recipe, and I can attest from eating his pies that following this recipe will lead to an excellent pumpkin pie: https://www.verybestbaking.com...-famous-pumpkin-pie/ [ more ]
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J-Pouch ForumsGeneral Discussion
1st thanksgiving!
U UjohnjC
UjohnjC thanks everyone and happy thanksgiving peace jj [ more ]
mgmt10 I eat everything. Chew your food well if you're worried and enjoy the day! [ more ]
Scott F I eat it all, too. Most J-pouchers have pretty varied diets. Some do notice trouble foods (and some of these are probably deceptive or echoes: I still avoid a glass of milk even though I finally discovered I was fine with it). Others do have lots of food sensitivities. If you don't know which category you are in then it's best to pay attention and figure it out. And for most of us, the best advice is to not overeat. The corn will come out looking like...corn, but that's just fine. Remember... [ more ]
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J-Pouch ForumsK-Pouch Korner
Stoma is a bit small / stricture?
B Bodoni
skn69 Bodoni, What I found that worked really well (but you need to be Mcgiver here) is to use the tip of those 60cc syringes...they come with a tip cover...it is the perfect size but could be dangerous if pushed all the way in so I melt the open end over a flam or boil it and then slowly press it down until it turns into a puddled hard base large and smooth enough to not hurt me...the tip goes into the stoma, the base sits outside and I tape it down... I have all different kinds & sizes of... [ more ]
bcirray Bodoni Please review the post about small stoma just before yours. I suggest the same answer for your problem. Ray [ more ]
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J-Pouch ForumsHelp! Need advice now!
Throbbing ache in rectal area
heverhever
Jan Dollar So glad for you! Now, if they are helpful, then that is the real positive. I think sometimes we can get so pain adverse, we become paralyzed and unable to proceed. Same thing with fear of side effects. I'd rather try and see how it goes. Jan [ more ]
hever Guess what? Tried it and it worked great, sometimes the simplest solutions escape me!! Thanks again [ more ]
Jan Dollar Sometimes the simplest solutions are the best! I use K-Y for my Canasa suppositories and they slip in so fast it is unbelievable. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Prednisone is a nightmare.
RE5RE5
Scott F If symptoms clear up on Cipro and/or Flagyl then you don't have "antibiotic resistant" anything. If it won't stay cleared up between courses of antibiotics, then you might have "antibiotic dependent" pouchitis. [ more ]
CTBarrister I would tend to agree, if your GI prescribed prednisone over Entocort for those issues. [ more ]
RE5 Yeah I have Crohn's with the good ol J-pouch. I swear up and down I have pouchitis but, my GI Doctor isn't exactly listening to anything I say. I also think I have some sort of antibiotic resistant pouchitis since some symptoms clear up when I take metro / cipro. I think I might be at the point where I will have to travel to a GI that specializes in pouches because I'm not getting anywhere with the GI doc I have. [ more ]
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J-Pouch ForumsGeneral Discussion
Perianal crohns, functioning j pouch.
J j_stone
RE5 Let me know what you find out. I'm literally in the same spot you are. [ more ]
LORI726 What about nitro oint rectally (negative- causes bad headaches) or nifedipine oint rectally? Both have helped heal/get rid of my fissures in the past. When things were really bad, I would have a bowel movement in the warm sitz bath water whenever possible. Definitely was easier/less painful that way than the normal way!! [ more ]
Jan Dollar Hopefully you get some viable options with that info! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Dysplasia or not
ItsanewworldItsanewworld
clz81 After 14 years of UC, my annual scope showed low grade/indeterminate dysplasia. My GI decided to treat aggressively with UC meds for 3 months to see if it went away (meaning that what they saw was just inflammation). Had another scope 3 months later that showed the dysplasia had become more widespread and also had increased in grade. By the time I had my surgery 3 months after that, when my colon came out, there was high grade dysplasia throughout. Long story short, you may want to play the... [ more ]
CTBarrister I also had low grade dysplasia found in my colon and was recommended to have surgery after 20 years of UC. I delayed for about 9 months after that diagnosis, and when I finally had surgery things had progressed and my surgeon advised me that my colon was dissolving in his hands as he removed it. Apparently I was very close to experiencing perforation and toxic megacolon. Things had gone from an elective surgery to a "can't wait any longer" situation based on what he told me after the... [ more ]
J9Pouch So after 20 years with UC my annual scope turned up some low grade dysplasia. That's the first time my GI suggested surgery and I flipped my lid. I spoke to a surgeon, they said it was entirely possible that follow-up scopes could show it was a false result and that I should get re-scoped every 3-6 months just to be safe. My GI said that after 20 years my chances of developing colon cancer were 30% and I should consider surgery regardless. I desperately wanted to put it off for at least a... [ more ]
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J-Pouch ForumsGeneral Discussion
Lomotil Question,
Clever1Clever1
powder we buy the real Psyllium, without all the additives and chemicals [ more ]
Scott F Many folks see improvement when they use some form of soluble fiber, which will thicken and bulk up stool. Psyllium (usually Metamucil or Konsyl) is common, as are Benefiber and Citrucel. A personal dose has to be worked out through experimentation, and some folks have gotten into trouble by overdoing it. Some surgeons advise to use it with half the amount of water recommended on the label, though I disagree with that advice. And some folks feel worse instead of better when they take soluble... [ more ]
powder How lucky for you and hopefully many more have a great success with psyillium [ more ]
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J-Pouch ForumsPouchitis
Cipro making me worse?! I think!
Stephaniesays91Stephaniesays91
ks1905 Do you have Thrush? Sometimes I get Thrush from antibiotics and need Fluconozole to treat it. I get bad D from Thrush. Have you been tested for c.diff? [ more ]
puffadderbite Try drinking some Kefir , can get at supermarkets. And you may want to try mesalamine enima one in morning and one at night (and also hydocortisone enima one a day inbetween) anal pram cream twice a day on the rectal area if your flare is low.Flagyl is plenty [ more ]
Scott F Canasa suppositories have the same medicine as mesalamine enemas. They are more expensive, but perhaps they are available where you are? [ more ]
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J-Pouch ForumsGeneral Discussion
Back to work....
PouchomarxPouchomarx
Pouchomarx myOriginally Posted by aka KNKLHEAD: Yikes! But I am optimistic for you! I should note, after an "RR" (Remzi Redo) I had four solid days of business meetings early morning to late night out of town -- breakfasts, meetings, floor shows, late dinners and a few glasses of wine -- and all I can say is I'm not sure how I could be better. I have to remind myself, I think I had my takedown after redo at the end of August -- so I'm three months out. I am hoping even better for you, Poucho. Think... [ more ]
aka KNKLHEAD Yikes! But I am optimistic for you! I should note, after an "RR" (Remzi Redo) I had four solid days of business meetings early morning to late night out of town -- breakfasts, meetings, floor shows, late dinners and a few glasses of wine -- and all I can say is I'm not sure how I could be better. I have to remind myself, I think I had my takedown after redo at the end of August -- so I'm three months out. I am hoping even better for you, Poucho. Think positive, healing and happy thoughts! [ more ]
Pouchomarx thanks guys... Knucklehead has been my model of inspiration [ more ]
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J-Pouch ForumsGeneral Discussion
Does Jpouch get rid of Colitis ??
Jeff807Jeff807
JenJen Originally Posted by JenJen: Removal of the colon (total colectomy) removes the symptom, colitis (inflammation of the colon.) Those with a permanent ileostomy and no remaining colon or cuff, can no longer have colitis. Those who have a j pouch, can have similar inflammation in the several inches of remaining colon used as a rectal cuff which is commonly called cuffitis (inflammation of the cuff.) Because total colectomy does not eliminate the cause of the inflammation, which is an autoimmune... [ more ]
CTBarrister It's true that the surgery eliminates the problem (diseased colon which could become cancerous) and not the cause (autoimmune disorder). The autoimmune disorder remains and may manifest in other ways and other illnesses - or not! If it doesn't, you could view yourself as being cured, I suppose. But in many cases, people with J Pouches develop Crohn's or Crohn's like symptoms and/or pouchitis, rheumatoid arthritis, anklyosing spondylitis, and other disorders that are caused by an autoimmune... [ more ]
Spooky A j-pouch should not be considered a "cure" and if any surgeon tells you this, it is not a correct answer. Basically, you still have ulcerative colitis/IBD even if your colon is removed. UC can recur in the remaining part of the rectum (the rectal cuff) no matter how small it is, and there are many in the medical profession who also believe that pouchitis is simply another inflammatory process and as such, just another manifestation of IBD. You may also still experience extraintestinal... [ more ]
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J-Pouch ForumsHelp! Need advice now!
No sex drive
N New_Life
nikiki By your photo, I'm going to guess that you are male New_Life? Just in the last few days, someone else posted on the survey about the impact of a j-pouch on relationships that he developed ED after surgery. I've also seen it noted in some of the literature on IPAA surgery (probably pretty easy to find if you google "ileal anal anastomosis erectile dysfunction" or something like that). Women have potential for some sexual dysfunction issues arise too. [ more ]
CTBarrister Is it your sex drive, your ability to get an erection, or both? I didn't have any impact from my surgeries but other factors could influence it as mentioned in the last post. [ more ]
BillV I had that happen when I was going through three major j pouch surgeries many years ago. Other factors including a very ugly divorce and getting fired from my management job by certified letter while in the hospital recovering from surgery were involved. Given all that was on my plate at the time, it was understandable why it took a while to re-acquire interest in sex. Be patient with yourself and just “let it happen”. Never think of yourself as spoiled goods and present yourself positively... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis
N New_Life
Scott F One thing that has been shown to prevent or reduce pouchitis recurrences is VSL #3. It's an expensive, high-potency probiotic. The DS (double strength) form requires a prescription, but is sometimes covered by insurance. I take 4 DS packets/day, which retails for over $600/month, but many people do well with lower doses. VSL kept me off antibiotics for a couple of years. A very low carbohydrate diet seems to help some folks prevent pouchitis from returning. Some folks have recently posted... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Night time leaks after none
JB Jordan B
Scott F Cutting back on fluid, unless you were drinking quarts near bedtime, seems to go badly for many folks here. The one nearly-universal thing that J-pouchers experience is a tendency to become dehydrated. [ more ]
Jordan B I upped the amount of Imodium and cut back on my fluid intake and that seemed to do the job. [ more ]
JJA Agree-in my pre-challenged sphincter days, night time leakage was my main pouchitis symptom. Had it about once a year in the early years-flagyl usually worked. If not, Rowassa or Cory enemas did the trick. Hassle, but relatively easily fixed. Good luck! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bleeding 4 weeks post takedown
S sally85
Scott F Hemorrhoids can bleed a fair amount, and they can swell. Do you have a good GI or primary care doc who can take a look? That's better than speculation. In any case, it's important to find a way to stop straining on the toilet. It is doing you more harm than good. [ more ]
sally85 Thanks Scott, can there be quite a bit of bleeding with hemeroids? And also do you get the pressure feeling with it? at the moment it constantly feels like the pressure build up down there is going to drive me mad, it's always the same day and night, and whenever my eyes open at night I fee like I have to go straight away, is this all normal? Sally xxxxx [ more ]
Scott F One possibility is that you may have given yourself hemorrhoids with the straining. You're still figuring out the sensations down there, but it sounds like you're getting plenty of signals that *don't* mean it's time to empty your pouch, but you're going anyway. It's important to be gentle on your body and experiment with waiting longer, even though your new body part may object, and it's possible you may misjudge in the beginning. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Take down or permanent end Ileo?
natenate
Scott F If things work as they usually do, folks can usually go back to fairly normal activities in about six weeks after surgery. There's still plenty to adjust to, but typically those adjustments can be made while living a full life. I felt well enough to go back to work (desk job) after four weeks, but I took the full six, since I didn't like the job I had then. Some folks get complications or have a much more difficult adjustment period. There are more of them posting here than there are folks... [ more ]
Clever1 I've have a "temp illeo" for years now. I've lost count to be honest. I had a lot of issues so once I started to get better I didn't want to go back. But I need to get on with it at some point. [ more ]
LORI726 Hi Nate, So you look crazy young and I will tell you my experience with J pouch surgery. I had my J pouch surgery done in 3 steps after weeks....maybe more like 1.5 to 2 months of living on TPN in the hospital when I was 18. I had step 1 done in August, step 2 done in October, and step 3 at beginning of January. I was in the hospital for a week after step 3 and felt terrible...think it just took some time for my bowels to wake up. At the end of that week, I was eating my usual foods and able... [ more ]
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J-Pouch ForumsGeneral Discussion
Fistula and anucort
rachelravenrachelraven
n/a I've been going through a similar situation for the last couple months: my symptoms have been feelings of narrowing/swelling, PRESSURE, and throw in some increased frequency, urgency, and accidents/leakage, increased drainage from fistula. My cuffitis symptoms are not classic, either. I very rarely have bleeding or pain. Scopes however reveal relatively severe cuffitis (and pouchitis in the distal end of pouch) ... always. I have not been on steroids since original surgery. I too have been... [ more ]
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J-Pouch ForumsOstomy & Skin
How long did it take you to master ileo bag wearing?
TE MarieTE Marie
TE Marie I agree we have to make what we have decided upon work. There aren't anymore choices for me. I am going to have to go to a pain management doctor as the lysing of my adhesions and shutting down of my j-pouch has not gotten rid of my pain. The medication I have been taking for 5 years either isn't strong enough as I have more pain or I am needing more because I have built up a tolerance. That is a slippery slope. Dependence is there but not addiction, I don't think. I am putting up with more... [ more ]
Mysticobra That is good news Janet. We all have to be so strong to get through any of this. You sound like your doing well. I know it's not one hundred percent. But we have to make it work. Keep us up on things. Especially good news! Richard. [ more ]
TE Marie Great news Janet! [ more ]
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J-Pouch ForumsGeneral Discussion
Uveitis
Mark65Mark65
Mark65 Hi Cat, For now the Imuran seems to help so I'll take it At some point I'm sure the Doctor will try and bring me off the Imuran and see how it goes. If I need to stay on it ... well .. guess it'll have to do. [ more ]
Catinthehat Mark, I think inflammatory problems run in my family. I have had UC since my twenties (now 69). I had j-pouch surgery about 7 years ago. I have had other autoimmune problems as well, including polymyalgia rheumatica and pyoderma gangrenosum. So far I haven't got Uveitis, however my older brother has had it for at least 20 years (he's 74). He has lost about 95% of his vision despite various treatments. I have always felt that his smoking and drinking contributed to the uveitis. I hope you are... [ more ]
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J-Pouch ForumsHelp! Need advice now!
My GI retired.need a new one in Iowa
H Halo52208
Halo52208 The only other one for the pouchitist was Xifaxan. All it did was clean out my wallet. Problem is I need to find a new doctor to get something else. After the last one, I want to make sure the dr is experienced. I don't know how much my family dr will do for meds until then. Wish I lived closer to mayo. In the mean time I have used my flagyl as i still have refills from my old dr. [ more ]
Scott F Have you tried any other antibiotics? There are a number that often treat pouchitis successfully. [ more ]
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J-Pouch ForumsK-Pouch Korner
An official K poucher
J JLH
skn69 Sounds fantastic Janet, Freedom! Just take it easy. No salsa dancing (or eating for that matter!) and not snow shoveling marathons...this is your baby for the next 6 months so please be kind to it! And you need to give it a name (makes it easier to talk about in public with friends...and not the same name as your old stoma or j pouch...he/she deserves a brand new happy name!) Good luck getting out of there and heading home. Sharon [ more ]
JLH Hi guys! I have been busy all morning with final prep for today's release from hospital! The stoma nurses said I'm doing an excellent job on maintaining the drainage and understanding how the system works. It was nice to have that reassurance. Had a minor blockage this morning, which gave me some extra practice with pulling out the tube, cleaning and irrigating it. Everything else looks very good and they gave me a get out of jail card for free. I had been sort of dreading this stage of the... [ more ]
JLH Hi all I'm in a very good recovery mode, helped along by a good friend who came to visit me for three days. So the pain is under more control and yes I'm being much more pleasant patient! It's funny because now that the spine pain is under control I can actually feel the pain from the abdominal site and I understand that that also hurts. But it will get better over time and no heavy lifting. Bill thanks for the traveling tips. I have a friend coming who will check me out of hospital and stay... [ more ]
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J-Pouch ForumsGeneral Discussion
Taking medicine with psyllium husk
DorisRDorisR
Jan Dollar Ha! We should only be so lucky! My gut is extremely efficient in extracting calories no matter how fast it zips through. Jan [ more ]
DorisR Thank you for the response. I hope it does that with my calorie intake as well [ more ]
Jan Dollar The reason you are not supposed to take fiber supplements with other medications is not because of an adverse effect, but the fact that it may block or delay absorption. This could affect the efficacy of your medications. But some drugs may be OK. Mainly, if you should not take a medication with food, the same is true of fiber supplements (Of any kind, not just psyllium). Jan [ more ]
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J-Pouch ForumsOstomy & Skin
Convatec
SH shawne h
TE Marie I started out with Hollister and am using Convatec too. I have tried a few other kinds at my stoma nurses suggestion and am sticking with Convatec. I have a lumpy abdomen so have found using the slim Coloplast thinner barrier rings help it stay on longer. In my case I cut it in half and put it directly under my stoma before putting on the wafer. Have you tried to use a Metamucil to thicken your output? I use it when my output gets too thin. I use the generic gelcaps as I don't like drinking... [ more ]
Caty Shawne, I've been using Convatec moldable wafers since 2007 with great results. They hold up very well. I have liquid output and I'm able to wear these wafers up to five days. Caty [ more ]
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J-Pouch ForumsGeneral Discussion
Psyllium Husk, Potassium and Water
DorisRDorisR
DorisR The potassium was 5.2 and wasn't that elevated. But because my fasting glucose was 106 and the potassium elevation too, I thought I'd better ask around. My blood levels have always been good. However, it wasn't high enough for any concerns but I need to keep my eye on it. Thanks for the input. [ more ]
Jan Dollar Yeah, I have seen one report, but this was truly a crazy amount of bananas and this person was eating nothing else, not drinking hardly any fluids and had an eating disorder. Jan [ more ]
Scott F While I have (once) seen high potassium from banana abuse, I certainly agree with Jan that a damaged blood sample or a medication side effect are more likely causes for the result. Metamucil just isn't a suspect. [ more ]
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J-Pouch ForumsGeneral Discussion
Dysfunctional pouch w/ Chronic Pouchitis (?)
SolomonSealSolomonSeal
SolomonSeal Regarding pouch excision: how did you guys handle the potential complications? Adhesions, male sexual incapacitation, losing small bowel, and goodness knows what other unexpected issues. I really am worried as it is really depressing living with this quality of life and feeling like I have no reasonable options to improve things. [ more ]
TE Marie I had surgery diverting from my j-pouch to a permanent ileostomy while leaving my j-pouch intact on 8/31/15. I had a pouchoscopy a few weeks ago and no pouchitis or cuffitis. I was not given any medication for the scope so my husband and I saw the full scope. I had both of them chronically, had recurring strictures plus pelvic floor dysfunction. I let things go too long and should have done this sooner. That said, I am surprised your doctor is willing to remove your j-pouch before you've... [ more ]
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J-Pouch ForumsGeneral Discussion
scope?
U UjohnjC
Jan Dollar Some clean out is OK, but anything too involved is just a waste of time and energy. The staff typically just issues the standard prep because the doctor does not tell them there is no colon to prep. I just do clear liquids the day before and tap water enemas until clear a few hours before I leave the house. Jan [ more ]
clwakley It depends on the Doctor who is doing the scope. Some do not require a complete prep as you would for a colonoscopy. Some do though. [ more ]
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J-Pouch ForumsPouchitis
Pain management
TinatTinat
Tinat Hi thanks for your replies, I am currently trying Entyvio, but not yet seeing any improvement and have tried many oral antibiotics and combinations, so I'm hoping the Entyvio kicks in soon. I haven't tried these other pain meds, but will mention it to my doctor and see what she says. I do remember taking prednisone and the pain did subside, but the side effects of the prednisone...OMG...so very hesitant to go back to that....I think I'd rather manage the pain with T3 for now. Originally... [ more ]
Sweetie1234 Have you ever tried Bentyl (dicyclomine)? I have found that it really helps with stomach cramping and discomfort. It slows me down enough to get a good nights sleep, but doesn't completely stop me up. Also, I can take it during the day or at night because it doesn't make my feel "drugged" or tired. [ more ]
skn69 I honest prefer the pain to the side effects of the opiate based pain meds...I tried tramadol that they said would not have the same side effect but it slows my gut way too much. I tried a non opiate that did nothing for the pain nor the the guts... I agree with Scott...you need to see if you can treat the problem to get rid of the symptoms. Sharon [ more ]
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J-Pouch ForumsHelp! Need advice now!
Has anyone had success treating pouchitis with VSL3??
KW Kim W
Scott F At home I mix VSL into some Greek yogurt, and generally add some blueberries and whatever flavor of preserves I'm in the mood for. I use two packets at breakfast and two before dinner. I find it just about undetectable in yogurt. When I'm travelling I sometimes mix it up with Metamucil (orange flavor with sugar), which I take on the same schedule. It doesn't taste that great (kind of like the world's worst Creamsicle), but hey, it's medicine, not snack food. [ more ]
SarahXYZ Scott, that's great to hear about that success. I had to give up on vsl3 because of the cost. I'm currently taking align after a month on Cipro, but I know vsl3 is supposed to be the best. When I tried it I found it unsavory - how do you manage 4 packs/day? also, ditto to what ppl have said about treating vs. preventing pouchitis With antibiotics vs probiotics. [ more ]
Scott F Poucho, I first appealed to the insurance company. After that failed through a couple of steps I appealed to my state's insurance administration, based on medical necessity. That was eventually successful, but altogether it took almost a year. I'd be happy to share the general parts of the appeal letter, which included footnotes from the medical literature. The scary part was that I kept taking it during that year. I think that may have made the case more persuasive, but it was a significant... [ more ]
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J-Pouch ForumsGeneral Discussion
PROBIOTICS
DowntownDowntown
Downtown Thanks Spooky! = I am going to go the ALIGN route from COSTCO. Two bottles with and $11 discount for a basically 3 month supply on sale now for $43 and some change. Also going to chat VSL3 DS with my gastro MD when I have my routine flex sig in December. BTW this feb will be my 6 yr pouch anniversary. [ more ]
Spooky VSL#3 was also cost prohibitive for me as my drug plan does not cover it, even with a prescription, not to mention, many pharmacies told me they couldn't order it in anyway. So after trying several other brands, including Culturelle, Jaimeson 4-strain, and generic Lactobacillus acidophilus, I eventually started taking Align and I've had very good results with it. I've been using it just over 2 years now. Align tends to be widely available, and it's a little more budget friendly than VSL. I'd... [ more ]
Downtown Jan - Absolutely like your last line ... this too will pass. On a serious note, thanks for the info. Mike [ more ]
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J-Pouch ForumsK-Pouch Korner
Small stoma
B Bodoni
BillV I have not had a problem with stoma size with my BCIR, but a Marlen 30fr catheter with the bullet tip should be easier on your stoma than the Medina. Be sure to use plenty of lube and insert the catheter gently. Another thought is to use a plug known as a “binkie” to help maintain the size of your stoma. I am not sure to what extent it could increase your stoma’s size or help with your problem. Binkie’s can be obtained from: Wayne Jacks MWJacks@aol.com . There are several posts on stoma size... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
J-Pouch Longevity
H hfc
deweyj yay for the first time I almost feel like a rookie. my jpouch is 29 years old soon to be 30. prior to this discussion I had only met one person who had a jpouch one year older than mine. my dx has morphed to crohns based on clinical observation of chronic pouchitis, and development of two strictures, but truth be told we haven't had biopsy confirmation of crohns tissue. so we treat with a biologic paired with an immunomodulator and that by and large seems to work. hfc, kudos to you on 4... [ more ]
Tanner My pouch is 32 years old. Have had all kinds of problems in the past. But I am teacher and coach For 38 years. Lots of scar tissue problems. [ more ]
Bionic Woman Originally Posted by ValB: My pouch is 36 years old. I was the first done at the University of Iowa hospitals back in 1975...it was experimental at the time. There is so much available today, information wise, that we didn't have back then. They only waited 30 days before doing my takedown surgery. Finding a good colo/rectal surgeon is the true key. Its funny but I still keep in touch with my surgeons who did mine They were true angels. Hi ValB I'm confused. If you had your J-Pouch surgery... [ more ]
See all 11 replies...
J-Pouch ForumsPouchitis
Can probiotics be bad for some J-Pouchers?
KQ Kevin Q
drvena In my case 1 bag of vsl3 in the morning and before I go to bed seem to worsen my symptoms. But when I split one bag and take half in the morning and half in the evening it seems to be working fine. I don't use it on a regular basis, only when I feel a mild flare up. Then it helps me put it down with suspositories and some enzymes. If I have a big one only antibiotisc help. [ more ]
Kevin Q It has been my experience that taking high doses of VSL #3 right after a course of antibiotics has had severely negative effects for me. The last time I went off an antibiotic, I tried to follow the general consensus that I needed to "replenish" the good bacteria that was killed off. I figured taking high doses of VSL #3 would be the fastest way to do this. This ended up making me so sick that I needed to get back on the antibiotic. I was off of the antibiotic for about a week and doing fine... [ more ]
CTBarrister If you have chronic refractory pouchitis and try to go off antibiotics and "cold turkey" onto VSL#3 DS or other probiotics, it could be harmful to your health, and you should only do this under a doctor's supervision. I personally experienced a severe deterioration in my symptoms to the point where hospitalization was almost necessary, within 7 days. I have not found VSL DS#3 to be helpful in any way, although others have had success with it. For me it's just a hugely expensive placebo. I am... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Shooting stomach pains
U UjohnjC
Jan Dollar Yeah, could be a partial obstruction. Push fluids until this clears. And, no bowel sloers or fiber. Jan [ more ]
UjohnjC now when i get a cramp stomach pain i have small bm seems hard to get out also starts smooth then seems like it is to big is this blockage passing or is it pouchitis [ more ]
skn69 Sounds like a partial blockage to me...as long as a little bit is coming through you are not fully blocked. Heating pads, walking, gently rolling left to right with knees bent, gentle yoga movements, drinking fluids if they stay down, (no solids please until it passes)... If the pain gets worse, nothing goes through any longer, you start getting chills, shakes, fever or vomitting then head over to the ER. Let us know how you are doing as time goes by. Sharon [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Cramps
U UjohnjC
UjohnjC now when i get a cramp i have small bm seems hard to get out also starts smooth then seems like it is to big is this blockage passing or is it pouchitis [ more ]
Scott F The best way to test the fish oil idea is to stop it and see if that helps over a day or three. Cramps are commonly gas, and sometimes a partial blockage. It *might* be a garden-variety GI bug, or less commonly something like C. diff. I get crampy pain when pouchitis is active. [ more ]
UjohnjC Started taking fish oil also could it be thar [ more ]
See all 7 replies...
J-Pouch ForumsPouchitis
Fighting Pouchitis in China
L Lars05
Lars05 just imodium. since i take PM now, im not taking it right now. sure I eat rice at least once a day, as well as 2 bananas. Well I already have been to the local hospital, doing a blood test and a stool sample. As doctors said and as I read thru those results, everythings fine. They just found blood in the sample, which doesnt suprise me. I am living in a small town, nobodys speaking english or used to those mostly-western diseases - thats all I can do here for now. So I think, you guys and my... [ more ]
deweyj Jan, I so wish that my self profiteering insurer would not force me to get mail order specialty pharma to deliver my Humira, I wasted several hours again today to chase down my shipment. The most ridiculous thing is when they propose that its easier to deliver it to my home. NOT, and I still have to go to Walgreeens to pick up my other scripts. Its the fat profit they want to split with the spec pharma and cut Walgreens out of. but I digress... Lars I believe Levaquin (the flouroquinolone)... [ more ]
Lars05 Feeling great improvement on Levoquin. My frequence went down to about 8 times, but its not thickend unfortunately. I am feeling unbelievable tired and weak, as well my knee joints and my calves hurt. I've read about long term damages of bones and joints. Dont think this is my AB to go. My doc advised me via mail to take cipro now for 4 weeks, I'm unsure since it's a very similar one. An other opportunity would be flagyl. ////// Where I live, you're on your own. I'd have the chance to go to... [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
liners or pads to use for mucous??
PouchomarxPouchomarx
TE Marie Congratulations! I'm glad you are doing so well and are easing back to work already [ more ]
Spooky You can also order B-Sure pads directly through the manufacturer's site, it would appear: http://www.birchlabs.com/bsure...e-absorbent-pads.php [ more ]
Jan Dollar No, I doubt these would be covered under insurance. I was talking about your local hospital supply store or drug store, in case you needed them quickly. Sometimes the surgical clinic will provide dressing materials, but usually it is just for the immediate post op period. Refills, you are on your own. Shouldn't be expensive. They aren't expensive on Amazon.com. Jan [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
What should I do! Specific j pouch Qs
D donutz
deweyj I run half marathons regularly, I think 15 in the past 6 years. I just ran my second full marathon in 4:50:00. I stopped twice for pit stops, short and efficiently in and out in probably a minute and a half. I have managed to run several of my halfs without stopping at all. I usually run my halfs in about 2:15. Hydration is a serious issue that one has to be highly aware of when participating in endurance sports. There is a guy who was recently featured in Runners World, who won his age... [ more ]
donutz Thanks for all the replies and I definitely appreciate the point that the forum isn't a great sample of jpouchers as anyone with a perfectly working one might not need to be here. I'm struggling to choose the jpouch mainly for the reasons listed in my first post. [ more ]
skn69 Hi Graham, Welcome to the board! Yes, you are rather unusual but not exceptionel. Your calorie intake is not a problem...you just sort of have to decide how you want to intake those calories (I did it regularly using animal proteins, nut butters, dried fruits and chocolate, like Jan, my problem is of the 'not eating them' kind)...I don't like carbs that much so my diet is essentially low residue and high calorie and my pouch is very happy that way (that is me and not necessarily everyone... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Crohns dx?
pattympattym
Mountain Baker I understand why you would be hesitant. My pouch isn't great. It's okay. I'm hoping my sister will do better because she will get a j-pouch not an s-pouch, she probably won't have less bowel because of a fistula, and she has a doctor who has been doing the surgery for years. I was one of my doctor's first pouches and he was a trauma surgeon. Theresa [ more ]
pattym thanks so much for all the advice. my slides of my colon were destroyed after 10 years. So just recently, since my surgery was in 05. I think I would head out to CC for a surgical consult if I was to ever seriously think about a reversal. I feel great and my ileostomy works pretty good. Is it an inconvenience at times...yes but I am sure a j pouch can be too. Its a tough decision to make...I would sure like a flat stomach with no bag but not knowing for sure how a reversal would work for me... [ more ]
CTBarrister I think Yale does their pathology in house. And in fact I just went through this at Yale where my pouchoscopy pathology report was looked at for Crohn's vs. pouchitis and the 3rd different pathologist in 3 states and 2 coasts concluded "inconclusive." The other two pathologists were in Mount Sinai in NYC and in LA when the path report was sent out there for a second opinion at the behest of my then NYC GI. [ more ]
See all 8 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Blocked tubes - infertility after colectomy
B Bee26840
Sweetie1234 Hello Bee26840, I'm going through something similar. My husband and I have been trying to conceive for over a year with no luck. I just had an HSG on 11/13 and it showed that both my tubes have Hydrosalpinx and are blocked. The only way I can conceive is through IVF. Here is some information I found: Hydrosalpinx and IVF Studies have shown that success rates with IVF are reduced on the average with hydros present compared to cases that had hydros surgically removed prior to IVF. Because... [ more ]
skn69 I'm a lousy example but...I had my 1st HSG at 20...was trying to conceive for 18months since my marriage...they found a hemi-uterus (could not tell me if it was from birth or a surgical complication from pushing everything around in there), both tube blocked...informed me that I would never conceive. The HSG unblocked one of the tube...I ended up conceiving a number of times (I could never hold the pregnancy more than a few months so miscarried each time but I did manage to conceive!). I... [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
Bye bye pouchitis!
AllyKatAllyKat
AllyKat They say the turning point is after the third infusion. Are you on anything else in the meantime. I'm going to ask my GI about this as I will on,y have 4 weeks into my reversal. They wanted me to wait till after the third but I just have to get rid of this bag. [ more ]
Tinat I'm also trying Entyvio, going on my 6th week, but not really noticing much of a difference but still hoping, good luck to you, keep us posted. [ more ]
deweyj bye bye! good luck, hope it works for you. [ more ]
See all 5 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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