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J-Pouch ForumsHelp! Need advice now!
Leakage with j-pouch
FM Former Member
Former Member The surgeon also mentioned that a scope will be necessary to actually see what's going on that's why they cannot positively identify what the issue is. [ more ]
Former Member So today I seen a surgeon who works at the hospital I had my surgeries at 6 years ago. He said that he believes it could either be a prolapse or it could be many different things, however, since it's a children's hospital I have to go see an adult colon and rectal surgeon which I do understand it's just hard to find someone with experience with j-pouches. So I guess for now I am being treated with a hydrocortisone suppository to help with the inflammation they do suspect in my last section... [ more ]
Pouchomarx I had my pouch redone about 1.5 years ago by the great Dr Remzi who used to be at Cleveland Clinic. He also did a mucousectomy which is pretty standard with a redo. I have had very minor leakage as well even when I had the ileostomy. I was told it is somewhat common with a redo. Its not horrible and I do used a small square of toilet paper up against the hole, sometimes there is a small spot of stool and sometimes not but I keep it there just in case. I had a scope 4 months after takedown... [ more ]
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J-Pouch ForumsPouchitis
Managing Intermittent Strictures, Fissues and hemorrhoids
M MikeJC
Carey Ok thanks all I will find a gastro and make an appt I didn't always have this much trouble and pain (I have had my pouch for 20 yrs ) maybe because I'm getting older and things just don't work as well as they used to sadly enough. [ more ]
MikeJC Yes, Agree with Jeane. Take antibiotics Carey and don't suffer! I respond well to CIPRO. Some do to FLAGYL. And some take both for the maximum impact as these two actually tackle AEROBIC and NON-AEROBIC Bacteria differently. ( Please consult you're Gastroenterologist for this) Ease off the dairy aswell and any trigger foods for you for faster results. If you are stuck in a bad spiral as well, consider taking a course monthly (e.g) 1 week a month for 3 months so there's some support built in... [ more ]
jeane CArey, Don't suffer take the antibiotics. Within a couple days you should feel better. You prob need a good gastro to help manage your symptoms. Sorry you are not feeling well. [ more ]
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J-Pouch ForumsGeneral Discussion
Endoscopy phobia, anyone?
I Ikh
Ikh Ciao Jan, my problem is the air... We in Italy are using the flexible sigmoidoscope... Thank you. [ more ]
Jan Dollar Some folks here still get their exam via a rigid sigmoidoscope (sometimes called the chrome broomstick). I haven't had that since flexible fiberoptics were invented many decades ago. That device is indeed painful. Most of us are scoped with a flexible sigmoidoscope, or even the more slender pediatric scope (what my GI uses). These are not painful, but there is some pressure and cramping from the air that is pumped in. I have not had sedation since my colectomy, and haven't needed it. Jan [ more ]
Ikh Thanks to all! Perhaps my first endoscopy was unconfortable because of my tension or perhaps the equipe was not very good (I'm not the kind of person who always criticizes but the doubt could arise). [ more ]
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J-Pouch ForumsGeneral Discussion
Cuffitis or Pouchitis or Combo
KPKP
Jan Dollar You can have an abscess without obvious pus draining. Often, it is just bloody or blood-tinged serum. With an abscess, it is very painful before drainage, and just tender after it drains. If in the anal canal, the open edges will be sensitive to fecal or urine drainage. Jan [ more ]
KP Thanks for the reply! That makes sense. I can add cuffitis to my other issues. I recently read that before fistulas open, they often feel like a bump, boil, bubble, or zit. I've definitely felt what I would describe as a bubble on the right side of my anus when having issues emptying. I've probably felt this bubble 6-7 times over the past year. Not typically painful to sit down or touch, but it burns once it's open. I thought it was an inflamed hemorrhoid and maybe it is. When I notice the... [ more ]
Jan Dollar Bleeding is the hallmark of cuffitis, but you can have minor inflammation without it. Otherwise, the symptoms are the same as pouchitis. There are no pain receptors in the rectal or ileal tissue, so that "broken glass" pain is due to damage in the anal canal. There are a lot of pain receptors in the anal canal. Fissures are the likely culprit of pain with bowel movements and minor bleeding. The discomfort associated with pouchitis is due to stimulation of stretch receptors (like gas... [ more ]
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J-Pouch ForumsK-Pouch Korner
Is this normal?
PO Pressing On
JLH Happens to me often. Chew! [ more ]
skn69 Pressing on, Like Bodoni says, things can get dragged out or trapped in the valve during intubation and migrate their way out on their own, it happens to me often. I have a crook in my valve (like an elbow) and things just get stuck in their...About 1/2 later they pop right out (sometimes it is a tsp of gunk that slides out)...no biggie. On the other hand, things can also get stuck further down the canal and partially block the tube open and then allow air or 'stuff' to come out... [ more ]
Bodoni I have a K-pouch. Once in a while, when I am pulling the tube out....it may leave a piece of food in the valve tract. Then, some time later, that piece of food will come out on its own. This is normal. My pouch at times will release some gas/air. In theory - it should not leak air or gas. But my valve is a bit slipped - so you can't go by me. If it only leaked a bit of gas once, it's probably nothing. Now, if it leaks air a lot - then I would call Sue Kay and let her know. Keep us posted. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Potassium levels very low
G grandmaof1
Golfdrumst I recently developed a deep vein thrombosis in my left calf following 4 long haul flights in a 3 week period. Blood tests done in the diagnosis of this showed that i was dehydrated, had acidosis of my blood and very low potassium levels. I have a high output pouch and the doctors believe that this is to blame for my problems. Further tests showed that my kidney function is very poor and is about 1/3rd of what it should be. All of this goes to explain why i have been feeling so poorly for the... [ more ]
grandmaof1 Thanks everyone. You really opened my eyes up on just how our jpouch works. I guess I'm looking at it in the wrong way. Having it very runny is not a good thing. Thanks again. This site so amazing. [ more ]
Jan Dollar Unless you have a kidney or adrenal/pituitary problem, most likely this is due from too much diarrhea. Taking the concentrated potassium supplement is important, as a proper level of potassium is critical for heart and nerve function. If this is a persistent issue, you might need evaluation by an endocrinologist. Hopefully, it is just a blip. You definitely will more frequent testing than annually! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
What to expect with takedown
K KC23
GB2014 The surgery itself is easy compared to the others. What follows afterwards is different for every person. Many people have a rough time of it at the beginning and in the following months but personally speaking, I was out of hospital in three days, I don't remember any great pain, I had no urgency, no issues going to the loo and although there was some painful butt-burn for a month or so, I got by just using normal, wet toilet paper. A year later I have an excellent quality of life and the... [ more ]
CTB23 Sorry to hear that. Yes, I do remember having to move around in different positions. Did they insert a tube and then run fluid through your rectum and into the bag? That's how mine was done. I remember they had to get a thinner tubing because things were a little tight down there. Anyway, good luck with upcoming appointments and takedown. [ more ]
KC23 It sucked. I wish I had taken my pain medicine before lol. But they are strict in here in GA about it that I just try to conserve it.. I thought it would be like a fleet enema , but nope. They taped the enema down and made me move in all these different angles. They weren't allowed to tell me if my jpouch was leaking or not but I knew that before they did the x-rays. Hopefully all is well. I could see my jpouch for the first time on the computer screen but idk if my surgeons office will call... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Defecogram
BritBrat88BritBrat88
JJA Mano Tory and anal ultrasound (and even the old finger probe) can tell a lot about how the sphincter is working (or not). It is possible to get surgery to tighten the sphincter. I had that done after surgery to fix an anal fistula damaged my sphincter. It helped a lot, but I still had incontinence. Bulking the stool with fiber and Imodium or even narcotics helps too. I did notice when on heavy mess after I shattered my wrist, that high doses of narcotics actually made my incontinence... [ more ]
Jan Dollar Gee, you are already taking a boatload of powerful meds, so I do not recommend you seek more. Generally, oral pain meds are not very effective on anal pain. The pain you describe sounds more consistent with an anal fissure than a fistula. Yes, it is very possible to have both. It is also possible for your doctor to miss a fissure when doing a scope, unless he does a careful visual exam of the anus before inserting the scope. A fiisure can hide in the folds of the anal canal. Hot sitz baths... [ more ]
BritBrat88 Ok so still haven't gotten any test results but one reading from radiologist thinks I have a fistula and right noway actually thenjoy last 3 days I've been in excruciating pain..I'm having lots of fecal incontinence and it hurts like hell coming out..the burn makes tears come into my eyes and I'm bleeding and the spasms are killing me..the burn seems to be coming from deep inside my anus..could this be a fistula?? Or is there anything I can do to lessen the pain?? I'm already on percocets... [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch Art Model
J jakedude
jakedude also, I got a lot of compliments and not a word about the scars. defiinitely felt good and hope it encourages you all as well. we can do anything that anyone else does but IMO even better [ more ]
jakedude thanks everyone. so the modeling went great. nobody mentioned the scars . [ more ]
Jpouch1064 What a great thing to do!!! Perhaps you will get a chance to educate others!!! Every scar has a story. Out stories are ones of courage! Of coming through the flames and being forged, rising out of the ashes like the Phoenix!! [ more ]
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J-Pouch ForumsGeneral Discussion
Oldest People with a J-Pouch?
temotytemoty
sweet honey ❤️
JLH Cyndi Have you tried pelvic floor PT? It's a very humiliating process but boy did it work for me The key to control is developing your core. Do you do Pilates? I have a k pouch now, but that was for other reasons. J [ more ]
Cate I just joined this forum after suffering alone with complications of colectomy and j-pouch surgery for about 10 years. For me, the use of opiates to slow my gut down was essential. It was the only medication that slowed down the transit time of food without giving me gas. Not to mention, it helps with pain too. But once transit time increased and there weren't so many stomach and bile acids reaching the pouch unprocessed, my gut and pouch improved immensely. I just can't believe how many... [ more ]
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J-Pouch ForumsGeneral Discussion
After eating how many hours does it take to go thru system
G grandmaof1
TCM Speaking of Imodium, you may already know this but in case not, you can buy Loperamide (the generic) at Costco (perhaps Sam's Club too) for a lot less than Imodium. I recently paid $5.49 for 400 pills at Costco. Also, a couple of years ago when we thought Costco might stop carrying them (false), I bought a year's supply of Loperamide through Amazon at a good price. (don't remember the details but it was lower than Imodium. I take 3- 4 pills every 3 - 4 hours so I really go through them. My... [ more ]
Jpouch1064 Right after my surgery, I was not prepared for how different things come out. I would see some really weird colors and wonder what did I eat or drink? I had to think about it. I don't think about it now however. Grease goes though me in no time flat. Grapes, I just don't eat. I will be in bathroom pronto. It just varies for me and it may depend on if I have immodium on board. It could be 5 min or 5 hours. [ more ]
Carey Mine vary with what and how much I eat sometimes it's an hour and sometimes if I get lucky it's 3 hours before I have to go [ more ]
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J-Pouch ForumsGeneral Discussion
Surgeons
J moonsJ moons
Jpouch1064 Total colectomy with one stage Jpouch 1991 Mayo clinic by Dr. Wolfe!!!! Wonderful life, can't get colon cancer if you don't have a colon!!! [ more ]
Joan Gilbert Eric J. Fonkalsrud, one of the pioneers of the pouch, ileo-anal pull through. He was cheif pediatric surgeon at UCLA in Los Angeles. I had not one complication and have not since my 1989 surgeries, thank You, God. Amazes me how I could have such a life altering disease just pulled right out of me followed by 26 years of life without UC. joan [ more ]
ZUPPSS Original surgery Dr. Greenstein @ Sinai in NY. Pouch advancement Dr. Sonoda @ NY Presbyterian. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Is having gas of any value to a J-pouch owner?
LB Larry B
Larry B Thanks, guys! You answered my key question about whether gas was "necessary" to help digestion, out through the pouch. I take strong probiotics and eat a pretty low-carb diet, now, but am also on a run of Sulfasalazine to prevent pouchitis, after a bout with returning anastomosis strictures, which i now keep open by self-dilating with an18mm Hegar Uterine dilator, once-a-week. Maybe when I get off the Sulfasalazine I'll have less gas, and I 'll use Beano when I eat those veggies! Thanks... [ more ]
Scott F Beano is only helpful for gas from beans, cruciferous vegetables, etc. It does work well for those foods, though. You don't *need* gas, but to some degree you're probably stuck with it. [ more ]
skn69 I am not sure but the question may be a moot point...meaning, gas is a by-product of what you eat and what is eating you (bacteria...) and the interaction between the 2... Gas is produced most often during digestion (although you can drink it by ingestion carbonated drinks like coke or bubbly water etc). Depending on what you eat and how your body feels about it, you can produce less or more, plus pouchitis and bacterial overgrowth can also be culprits...you can find yourself in trouble due... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Loop ileostomy and anal discharge/leakage
V Vesp
Vesp thanks for the reply and things actually seem a bit better the last day or so, I think it was partially phantom bm feelings down there, my body was probably used to movement down there meaning I need to go, as with my UC it was always urgent. Been trying to stay calm and unlike with UC the feeling of actually needing the loo seems to pass. I managed to do small walks with out the urge to go after as well and actually slept through the night for the first time since surgery, though I did take... [ more ]
Winterberry Hello, VESP. When I had my ileostomy (loop), I had some discharge. A few times I even had solid BM as if I still had my colon. I told my surgeon and I don't think he believed me. I wasn't too worried about it since the nurse told me some discharge was just old blood and mucus from the big surgery being expelled, and I was getting nearer to takedown so i was okay with it. I think with the loop ileostomy some food can bypass the exit to the ostomy bag and food will go down into your anal area... [ more ]
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J-Pouch ForumsGeneral Discussion
SBO - First One
Y Yuthgi
Jan Dollar I agree with Scott. Until this becomes a chronic problem, there is no way to predict whether it will become one. Also, there is probably nothing you did or didn't do to contribute to this. Just one of those things. If studies could find no evidence of obstruction, my guess is that this is temporary or something else. Last year I could swear that I yad obstructive symptoms or gallbladder attacks. Investigations were negative. Turns out it was all pouchitis and maybe small intestine bacterial... [ more ]
Scott F Yuthgi, your question was about the future, and no one can really predict that very well. A partial obstruction like this is most often caused by the bowel twisting or kinking around an adhesion. Once it gets fully unkinked it will act like it has for the last 20 years. The kink or tight turn narrows the path through the gut, and solid food can get backed up quite painfully (though the food generally doesn't cause the obstruction). Liquids should cause you much less trouble. If it hasn't... [ more ]
Yuthgi No replies in here... that's disappointing. After and EGD and a ileoscope this morning there were no apparent reasons for what seems to be obstructions/adhesions in the small bowel. The next step is a lower GI/barium study of the entire small bowel. After eating lunch today, an hour after I am cramping again as the food seems to have hit the snags in my small bowel. I'm still in the same place. Any suggestions for how to break these "blockages/slowdown" myself? Laxatives? Anything over the ... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Using Rowasa Enema. Any advice?
S Sunflower70
Sunflower70 I tried the Lialda first but it did not break down in the pouch. Came out almost whole. I don't know why my doctor didn't suggest another oral form of mesalamine. I'll ask her. [ more ]
Jan Dollar How about oral mesalamine? Pentasa, Lialda, or Colazal? More than one way to skin a cat! Jan [ more ]
Sunflower70 Thanks, Jan! I wish I could use Canasa but I'm sensitive to an ingredient in it. I'm actually using Rowasa SF (sulfite free) which I had been able to use when I had UC. OK, I'll see how I do tonight. I think that I'm going to have to switch to Flagyl anyway. This was my doctor's very kind attempt to help me avoid antibiotics but I don't think it's really doing the trick since I still have a little blood. Too bad because the recent scope showed only a tiny little patch of mild inflammation. [ more ]
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J-Pouch ForumsK-Pouch Korner
Constricted Stoma
B Bodoni
JLH Bodoni what are your symptoms? If you were looking for a second opinion Dr Kiran is also in NYC. [ more ]
skn69 Yes and yes. I had a valve that sunk post op into the canal...leaving the hole in my skin without any reason to stay open. They tried to fold the skin over onto itself to open up the hole, to inject it with cortisone and a few other tricks (z plasty)...none worked in my case, I needed to have the valve pulled up and out the skin to block it open. The 3xs that they tried to fix it I had to keep the tube in for a minimum of a week...to avoid having the sutures rip out or irritate the zone. If... [ more ]
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J-Pouch ForumsGeneral Discussion
Afferent Limb Syndrome - constipation
T TomU
Scott F This is called Pouch Advancement Surgery. A number of folks here have had it and may be able to share their experiences. [ more ]
TomU Thought I'd give an update - the title of this thread should actually read Efferent limb syndrome (not Afferent). A small but important distinction as it is my pouch outlet rectal cuff that is elongated not my pouch inlet. Anyway I have finally been diagnosed with Efferent limb syndrome and am to have abdominal surgery in London to take out the pouch and cut the excess rectal tissue off that is causing all the problems (3-4cm of rectal cuff I'm led to believe). This will then be pulled down... [ more ]
Caroline Seguin When I can't empty my pouch completely or have trouble, I use my anal catheter and it works wonders. when I am constipated I found that the only cure is to drink two big glasses of Welch's grape juice. No my favorite but it does the trick. Good luck [ more ]
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J-Pouch ForumsGeneral Discussion
Almost two months post take down
EricaLeeJpoucherEricaLeeJpoucher
min990 Hi Erica, For buttburn, I use a bidet seat (you can buy them on Amazon) and calmoseptine paste. They've been a life saver. The bidet washes away the acidic output and also gives your bottom a break from the rubbing / irritation of toilet papers. In terms of difficulty evacuating, I bought a squatty potty which seems to have helped! I've also found that sometimes I just have to sit on the toilet for 10mins and wait.... Also, I try to keep my stool a bit more towards the liquid side as I found... [ more ]
EricaLeeJpoucher Thank you all for help and I'm glad there's others who know what I'm going through. I will try your suggestions and hopefully it will get better soon. [ more ]
Former Member Apply ilex Paste to affected area either to prevent of relieve pain and discomfort. I also insert ilext paste just to the inside of the sphincter, as far as comfortable to apply on tip of finger, this works for me and durring application, due the cooling effect of the ilex, I'm able to pinpoint exactly where the fissure is. [ more ]
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J-Pouch ForumsGeneral Discussion
EVENING BMS ,PAPRIKA AND RED PEPPER
bederyparisbederyparis
min990 I'd try a more bland diet for a couple of days and see how you get on. If your BMs are still much higher than usual, maybe get in touch with your doctor to discuss the possibility of pouchitis. Also, in terms of lying down, some people have mentioned in the past that lying on their back rather than the side helps. Worth a shot! [ more ]
GriffN Spices can definitely irritate your guts. It's so individual. Certain spicy food actually helps me out. However, even the same spices cooked with different food (that I usually tolerate) will keep me planted in the bathroom. I have the same issues with lying down. Basically, my guts seem more willing to move when I'm in bed. Also, I can only safely pass gas when I'm on my back. Most nights I'll try to sleep, then feel urgency for the bathroom. I'll sit for 10+ minutes on the toilet and not... [ more ]
skn69 Your body and pouch are very individual but yes, certain spices can stimulate output, gas and irritation. It is possible that both of you don't like paprika or red peppers (sort of the same thing)...Avoid them for a few days to see if it is you or your wife's cooking! Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch
tftf
J moons Awesome. Good luck! Let us know. [ more ]
tf Just received the xifaxan today. My ins approved the drug 100%, it was $2000.00. Thank the Lord. I will give a update after my treatment is over and if it helped . I pray it does and for everyone who has to face these challenges daily. [ more ]
tf I can say that my dr would have prescribed the antibiotic without the test. I insisted. These symptoms I have been having could have been over a yr or 2 now. At some point our dr's don't know what else to say. My surgeon told me he doesn't have enough knowledge to help me anymore. He said if I need any other surgery in the future I have to go to Cleveland clinic. [ more ]
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J-Pouch ForumsGeneral Discussion
Meds Ideas PLS
W Wendy@work
jeane I also use flax seed to bulk up and slow down my stool and as Scott mentioned, many docs really prefer Imodium over lomotil as it does not cross the brain and my GI used to say. [ more ]
Scott F Wendy, I'm not sure what side effects your doc is concerned about. Imodium works similarly, is OTC, and works just as well for many. I prefer Lomotil, but I only take 1-2 daily. Metamucil doesn't exactly slow the ship, and actually bulks up the stool, but it feels like a slower for some people. I use it twice a day. [ more ]
Wendy@work ❤️
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J-Pouch ForumsHelp! Need advice now!
Abdominal muscle spasms
J Joshinwash
Bodoni A couple of years ago, I experienced some minor spasms near my K-pouch. I had no pain, no cramps. I continued to eat as usual. And stuff traveled thru my intestines as always. I did tell my surgeon, whereupon he wanted me to get a MRI. He said I could have a partial obstruction. I put off any tests, etc. Finally, I agreed to have the MRI. And wouldn't you know it, on the scheduled day of the exam - they disappeared totally! Once in a while I may get a little twitch. It may last for just a... [ more ]
shaney Joshinwash, just curious as to what was the cause of your discomfort and what you did to make it better. I am about 4 months sisnce my takedown and am having some of the same issues and don't know what to do. Thanks so much for any help you can give. Steve [ more ]
Jan Dollar Sounds like this could be obstructive symptoms. If the pain is severe and not letting up, you need to go to the ER. If it is more intermittent and you are not distended, you can wait and see. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Life after J-pouch
mzmcgee1232mzmcgee1232
Jeffsmom Good luck! And feel better. I take XYZal which is by prescription. You can also take with the Claritin is Musenix or equivalent store brand. I take the XYZal, musinex and singular 365 days a year, my allergies are that bad! [ more ]
mzmcgee1232 @Jeffsmom i sure will...an thanks for the info..... i will try the Zyrtec real soon if the claritan dont clear me up in a few more days...lol [ more ]
mzmcgee1232 @marz thanks for the info...going to health food store to look for those [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain clinic
K KC23
Scott F The classic opiate to slow the gut is deodorized tincture of opium. It can be hard to get a prescription, and hard to get a prescription filled, but it's extremely effective. [ more ]
Cate Codeine is the most constipating of the narcotics, so it may be the most effective for you at slowing your bowel. I couldn't take it because it made me nauseous. But if you can tolerate it, it could be very helpful. I know we're in a time when prescription narcotics are coming under close scrutiny, but they are still used regularly to treat patients. I never had any of my doctors question my need for them or their usefulness in my treatment. I live in Seattle; maybe this is a more... [ more ]
KC23 Cate, codeine also slows my BM's, unfortunately I haven't gotten lucky enough to find any doctors who would openly prescribe it for that purpose l... maybe after my takedown.. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis annoys the dream
T Tino2000
Jan Dollar I took Humira for a couple of years, but it was for arthritis, not pouchitis/cuffitis. Then, I switched to Simponi, then Cimzia, and now Remicade. Always just one biologic. You never take more than one. I did travel while on Humira, but only when I was on it every two weeks. I planned my travel between injections so I did not have to deal with keeping the syringe on ice. Simponi was once a month and Cimzia was every two weeks. My Remicade schedule is every six weeks. Jan [ more ]
Tino2000 Scott and Jan, thanks for your answer, My doctor saw me on saturday and told me i have some cuffitis, he didnt see upper part so i dont know how the pouchitis is. but the blood test the c reactive protein is a little high, i hope its only for that I am starting with cipro and flagyl every 12hs for two weeks and cortifoam at night(rectal administration). I hope it will get better. One doctor thinks that i could have crohn but he s not sure. Jan how long did you take humira? do you leave it... [ more ]
Jan Dollar I needed weekly Humira when I was on it. Also, switching to a different biologic is not a bad idea. I am having good results with Remicade right now. Hopefully, the azathioprine will help, but it generally should be started before you go on a biologic. You may have already developed antibodies against Humira, so it may not work. I would also prefer rectal steroids over Entocort, but a number of folks here have had decent results with it. Is your doctor thinking you have Crohn's now? Entocort... [ more ]
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J-Pouch ForumsGeneral Discussion
K-pouch intubating
B Bodoni
skn69 Bodoni, A valve should never, ever leak...the problem should be that as you get fuller the valve gets tighter. So yes, there is a problem (you know that already). The hitting the side or the wall and having the end 'buckle' is not new to me...it happened a lot when my pouch slipped (no, it wasn't the valve, the whole pouch fell off of the wall multiple times) so that the valve was higher up with the pouch down lower and the whole thing led to impossible angles for intubation. Yes, once it... [ more ]
BillV I use the Marlen 30fr catheter that has a bullet shaped tip and, I believe, slightly smaller holes on the side than the Medina. I have never had a kink when where the holes are located when intubating, but then I never force it in. If it feels like I have “hit a brick wall”, I try to relax, change the insertion angle, or try again a short time later. The only time a catheter has kinked at a hole is when I am not careful in putting it in a small case for use when away from home. I get at... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cuffitis
J moonsJ moons
jeane Best of luck DDS. Let us know how you make out with your surgery. [ more ]
dds Jeane, My surgeon needs for me to lose fifty pounds before I have surgery. I will have an ileostomy for a while and I am overweight so he wants me to be lighter for my own good. [ more ]
J moons Thank you. I'm not on any antibiotics since they didn't give me any at discharge But I will ask. [ more ]
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J-Pouch ForumsGeneral Discussion
Bidet Broke/HELP
G grandmaof1
aka KNKLHEAD I have a coco with the remote. Literally has been used without fail, rough math, probably 20,000 times! I do not use the fan dryer, it's too slow for my liking. [ more ]
CTB23 I have tried a spray bottle also when away, not doing it for me. Let me know what portable bidet you got. We are going away in April and I want to be prepared. We went away at the end of October and I had the worse butt burn ever. Had to use the bidet and sits bath for a few days to recover! [ more ]
grandmaof1 Thanks everyone. Oh my gosh so many choices. I decided to go with a handheld one. I am shocked to keep seeing posting on how you use almost any to none toilet paper. I hate to say it but I use more. I am socked everywhere down there. I told my husband I don't get it. The ones that says this are the ones who don't have a heater either. I also finally broke down and got a portable bidet also. I have carried for years a portable plastic container in 2 sizes and try to spray up there but that... [ more ]
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J-Pouch ForumsGeneral Discussion
I have a question
EricaLeeJpoucherEricaLeeJpoucher
EricaLeeJpoucher Grandmaof1, I've had my J pouch for two months [ more ]
grandmaof1 I was told not to have formed chunks. Because sometimes then you have to push and was told to never push. Maybe you are using to much medicine or fiber. Sadly the medicine you have to work out for your body and demands. I'm more liquid. I'd prefer to be runny, then it comes right out and I can feel it and I know I got it all out. My doctor said well if you ever figure out how to get that everyday then to let him know. I guess everyone wants the same thing. But not for sure. Sorry for all the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hemorrhoid Help Please!
J moonsJ moons
J moons Yes, I had my surgeon and another attending look at it along with a pouchoscopy. The hemorrhoid has a fissure adjacent to it which makes the pain worse. They were more concerned with the cuffitis but I don't seem to have pain from that. [ more ]
Scott F Surgeons seem to avoid hemorrhoid surgery for J-pouchers. Topical treatments may help, depending on what symptoms you're having. Are you sure it's a hemorrhoid and not a pouch prolapse? [ more ]
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J-Pouch ForumsPouchitis
Leaky bottom
D dds
Scott F The pinkish fluid may be some light bleeding as the now-untreated cuffitis worsens. Perhaps the Cipro will clear the cuff up when you restart it. Your surgeon sounds like a bit of a problem. Perhaps you'd get better service from a pouch-knowledgeable gastroenterologist? Also, if you're not making progress on those 50 pounds you may need to find a more reasonable surgeon who will (along with you) accept the greater surgical risk from the higher weight. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
supplements
L Lin
J moons Thanks, Scott. Bodoni, I think it looks beneficial. I'm actually going to order some. So thanks. [ more ]
Scott F The whole product label is here: Forvia Product Label [ more ]
J moons No...its a product I haven't heard of before with a brand name. I've had "pyramid scheme" people try to sell me isagenix. I wanted to know if this is like that. [ more ]
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J-Pouch ForumsGeneral Discussion
Travel Tips
JenBJenB
Scott F Most J-pouchers need no accommodations like this, unless traveling after surgery, but thanks for sharing this for those that do! [ more ]
CTB23 Thanks. I am traveling by air for the first time in April, sine my takedown 6 mos. ago. I don't really have any issues so far, but have heard that traveling can make things more difficult. Definitely will be looking into this. [ more ]
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J-Pouch ForumsGeneral Discussion
Fuzzy Math? weight gaining question.
Clever1Clever1
Former Member A hour and half...... aren't you at all concerned about the amount of time you're spending in the "restroom" ? If you're gaining too much weight regardless of what comes out during a visit to the restroom, then it shows your just absorbing nourishment from your food. The only solution, regardless as to whether you've had your colon removed or not, is to eat and drink less, especially cutting out junk foods, fizzy drinks and reducing your sugar and alcohol intake. or Increase your level of... [ more ]
stellababy I'm in the restroom for an hour and a half after I eat and I keep gaining weight what's the problem [ more ]
Jaypea I'm not sure how much small bowel you have left but could you be experiencing some component of "short gut syndrome"? I might suggest that you see a dietician who specializes in GI issues AS WELL AS a sports physiologist. Merry Christmas Michelle [ more ]
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J-Pouch ForumsHelp! Need advice now!
Frequency and anal pain
I ittybittykira
EricaLeeJpoucher Thanks Winterberry, I will definitely buy that squeeze bottle. The shower does wonders for me, but I think a squeeze bottle would be more gentle on my sore butt. [ more ]
Winterberry Hello, Ericaleejpoucher and ittybittykira. The bidet that you have to attach to your toilet can be pricey, around $95 on Amazon and you *might* need a plumber, but the plastic squeeze bottle from Amazon cost around $12 - $15. I bought one before I went to my big surgery, just to be prepared. I took it with me whenever I went out, and had another that stayed home. It saved my life and my bottom. Fill it from the tap with warm water, and after you finished your BM aim the nozzle at your bottom... [ more ]
EricaLeeJpoucher After I go the bathroom, I get in the shower and wash my bottom. Then I dry myself off. After I'm dry, I use calazime with olivamine cream from Medline. It works wonders for me, so maybe you could try that. If you can get a bidet, that would help too ( I'd get one, but I can't afford it right now). [ more ]
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J-Pouch ForumsPouchitis
too many bathroom trips
ToniToni
Scott F Some people get tremendous relief from a low carb diet. It's definitely worth a try to help get pouchitis under control. It didn't seem to work for me, unfortunately. [ more ]
Zc Hi there. Not sure if my story helps abit. I had 3 bouts of pouchitis during 2012 and 2013. Both times being treated with flagyl and ciprofloxacin, my hospital struggled to get hold of vsl3 for me but at the same time I started a low carb diet. Basically I eliminated all rice, potatoes, bread from my diet 95 % of the time. I have not had a bout of pouchitis since then. I probably go to the loo 5 to 6 times on a bad day and manage to sleep through most nights without a bowel movement. I am... [ more ]
Scott F Antibiotic rotation is ideally done with three effective antibiotics. Cipro and Flagy are often two of them, but not always. The theory is that each antibiotic will remain effective longer if it isn't used continuously. [ more ]
See all 15 replies...
J-Pouch ForumsPouchitis
Nocturnal Seepage
GoHeels23GoHeels23
CTBarrister My nocturnal seepage seems to fluctuate with the dosage of antibiotics I am taking. At higher dosages, no or little seepage. At lower dosages, more seepage. Nocturnal seepage has become the strongest indicator of where I am in battling pouchitis. I do have a stock of Depends diapers to get me through the rough patches, but there are also times when I don't need them. [ more ]
Scott F If it's just light seepage you might try tucking a cotton ball slightly inside - folks here have reported good results with that approach. You might also try soluble fiber with dinner. I had better luck with Lomotil than Imodium. Good luck. [ more ]
J moons goheels23, im an inpatient at UNC right now. Guessing from your username you like UNC. Is that where your surgery was performed? Herfarth out me on desipramine at nighttime because it's side-effect of constipation and I have less accidents. Id also get pads (like women where during their periods) to wear in your underwear to catch it. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Leg muscles to fill anal cavity
RE5RE5
RE5 Apparently it's to fill the void left behind by the pouch being removed. I'm still having the Anus closed but, it's going to be packed with the two inner muscles from my thigh. I had never heard of this either but apparently it keeps the rest of the small Internal organs from sinkimg down. [ more ]
jeane Res, Is this because you are not seeing the anus closed after removing pouch? I too have never heard of this before. [ more ]
Mysticobra Interesting. I didn't know they did this. Is this for some that had their Pouches removed after many years of having it? Richard. [ more ]
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J-Pouch ForumsGeneral Discussion
Go to ER or no?
K KC23
Jan Dollar I believe only forum moderators can delete whole topics (which is what you do when you delete a topic starter). That said, this is a good post to leave up because it is a good reminder for all of us. Thanks for coming back and letting us know your outcome. Glad you are feeling better! Jan [ more ]
KC23 I went to the ER to get fluids .. really had no choice. How do I delete a post ? Lol not a comment but a post thread? [ more ]
skn69 How are you doing now? Has it slowed yet? I know that this is unconventional...but if you have a motion sickness medication (pill, patch, liquid, chewable...) see if you can get it down...it slows the peristaltic rhythm and allows your body to ease up on the output long enough to rehydrate a little... They have been giving it to me here for 35yrs for the same reason and started back in the '70's as a way to control 'chronic gastro'.... But please, listen to Jan's and Scott's advice...do not... [ more ]
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J-Pouch ForumsPouchitis
Experiences with VSL #3
FM Former Member
Kelly B34 I have never posted before. I've had my pouch for 15 years and up until I had my kids I had no issues. I've struggled with frequency, a bit of bleeding and itching horribly for the last 2 years. I was prescribed the dreaded Flagyl and it's helped my pouch. Twice before I've been prescribed Flagyl and it's made me feel awful. This time - not so bad! The only change is that I've been taking VSL#3 everyday. So if your antibiotics are wreaking havoc give it a try! Just don't take it at the exact... [ more ]
dawn58 You have to ask your insurance company if your policy covers it. There could be different policies in the same company and one covers and the other doesn't. When you call and ask, make sure to find out about vsl#3 DS. [ more ]
pouchmonkey Does anyone know if Anthem covers VSL? How long did you guys have to take it to see results? Any guidance on ordering or taking it? My dr wants me to try Humira for pouchitis, but I would like to try something a little less severe first... [ more ]
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J-Pouch ForumsGeneral Discussion
anal/rectal discomfort
H hattie
Winterberry Hello, Hattie. My j pouch is also because of cancer. A month or so ago I had sudden and severe pain, it struck like lightening, almost bringing me to my knees, and lasting several minutes. I feared it was cancer again. I researched and found the following information describing the pain. It eased my mind to know what it is, and having the all clear after my scope in December was a relief too. See below, taken from the Internet: Rectal pain symptoms The pain of proctalgia fugax is sudden and... [ more ]
J moons I have same symptoms and can be caused by anal sphincter muscle spasm from straining or increased bowel movements. Dr. Has me use nifedipine ointment on the anal opening to relax the sphincter muscle. Others on this site have mentioned they use diltiazem ointment (which is a drug of the same class and mechanism). Nifedipine/lidocaine ointment is a compounded medication so needs to be made at a compounding pharmacy. Some university hospitals make it. [ more ]
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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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