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J-Pouch ForumsGeneral Discussion
Homemade Hummus
D Dog
CTBarrister By the ways, Girard's has now put out a very tasty roasted garlic hummus salad dressing. It is very good. [ more ]
Dog Thanks! I'll give it a try again and see what happens. [ more ]
skn69 Gas and wallpaper paste yes, hard, no...could it be dehydration? If it contained a lot of spices or salt you may need to up your liquid intake when eating it...or it may be the bread that you ate with it??? give it a week and try again... Sharon ps. The more garlic and lemon juice in it the better! [ more ]
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J-Pouch ForumsGeneral Discussion
can't go
magic30magic30
TE Marie I'm curious too Magic. I just read this and wanted to tell you your thyroid is most important to your pouch function. You need to take it the first thing in the morning 45-60 minutes with water before you eat or take any other medications. If you need to set your cellphone alarm, I have to do that when I'm taking antibiotics. On 2 different occasions I've been to the Mayo clinic and my thyroid levels were way off and my GI specialist there explained that alone can affect frequency and... [ more ]
Spooky Hi magic, Did you get up update? How are you feeling? [ more ]
Jan Dollar I agree, particularly if you've been inconsistent with your treatment. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Male Impotence Question
F Future_Jpouch_Patient
CTBarrister It is a statistic based on actual incidences. It is not a probability. It is a statistic. I should add that when I had my surgery with Dr. Gelernt in 1992 he had done more J Pouches than anyone in the USA and very likely the world. It was in the thousands. He knew what the percentages were better than anyone. [ more ]
Future_Jpouch_Patient So - when all these people and surgeons quote these statistics - what do they actually mean? For example, if my surgeon says 2% chance of permanent impotence. Does that mean that he actually has seen 2 people out of every 100 surgeries he has done become permanently impotent? Or is the 2 percent number an assessment of what he thinks the chances are roughly based on the nature of the surgery? [ more ]
CTBarrister There are other risks to the surgery besides impotence. If you are looking for a risk free alternative or guarantees, you are not going to find them. Death was also mentioned to me as a possible complication of surgery, in addition to impotence (death was mentioned first). I don't know what percentage of surgeries result in death, but if it is the same as permanent impotence, which risk concerns you more? Going back to what Jan said, when I had my surgery in 1992, my surgeon at the time told... [ more ]
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J-Pouch ForumsGeneral Discussion
Lower back pain - How can I tell what to do?
sfgiantsjosfgiantsjo
Akk3769 I always get lower back pain when I have pouchitis. I thought that it was because of an injury but turned out it was pouchitis. The weird thing is that I really feel it when I sleep on my back. [ more ]
skn69 I second Jan but might add that if it is radiating from your buttocks downward towards your leg or you are also getting knee pain or aches it might be sciatic nerve pain...sometimes you end up with both...I have severe sacroilitis with a hint of sciatica for the fun of it (do not make me bend and lift or I will scream!) and my only relief is mega doses of anti-inflamatories during a flare along with muscle relaxants and a lot of walking...the more I move the better I am...plus regular... [ more ]
Jan Dollar If you rule out pouchitis, with no other pouchitis symptoms, it could be enteropathic arthritis, which is related to ankylosing spondylitis. My initial symptoms (other than the random tendonitis I would have here and there) was upper buttock pain. This pain was not injury related either, and was worse with inactivity (like at night or resting in a chair), and improved with activity, like walking. At first I thought it was just age catching up with me, but when it went on for months and... [ more ]
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J-Pouch ForumsGeneral Discussion
Now Adhesion Surgery!
B beckysmom
beckysmom Thanks for the reply and information Jan. Her surgeon didn't use seprafilm in the past because he says that it can interfere with the healing where he did surgery. He will only use it now if it IS adhesions, even though in the past he said she did not have a lot of adhesions....so we are hoping it is just adhesions. Hoping for the best! [ more ]
Jan Dollar Gee, with all her troubles I would have thought they would have used Seprafilm with the last surgery! But, over time, it seems those adhesion barriers are a mixed bag and not as much of a sure thing as they thought they would be. Still, it is worth a shot, I'd say. I see there is a new warning not to wrap it around an intestinal anastomosis, as it can lead to leaks. I suppose it interferes with the normal scarring process that it also can interfere with the healing at the anastomosis. I... [ more ]
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J-Pouch ForumsHelp! Need advice now!
refractory cuffitis - meds/steroid injection to cuff?
BM boy's mom
Jan Dollar Yeah, sometimes you have to dial back the TPN for the appetite to return. But, if he is still having a lot of gut issues, it definitely is a balancing act. When they are young like this, there is not much wiggle room and you need to maintain a certain level of nutrition or growth is stopped or retarded. Plus, he is at that age when there is supposed to be a growth spurt starting. The good news is that boys generally lag behind girls quite a bit, so he has plenty of time before the bone ends... [ more ]
boy's mom yes - he has so much weight loss because of UC and 3 surgeries, but since his takedown in April he cannot eat enough to gain any weight back and now is he having intermittent nausea too. Sometimes I think maybe the TPN is making it hard for him to eat a lot -- that it may bring on the nausea. The nausea is more in the morning when he has completed his 12 hours of TPN. [ more ]
jeane Could his weight loss be mainly due to the loss of weight from Uc and the surgeries? [ more ]
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J-Pouch ForumsGeneral Discussion
defogram test vs mri
BM boy's mom
liz11 A defecogram is a completely different test than a pouchogram. I mentioned this to you in another post a few days ago I believe. I believe he needs the defecogram to understand if he has "mechanical" problems emptying whether due to efferent limb, twisted pouch, pouch too big, or other things. In the defecogram, they fill you up with some kind of contrast, I don't remember what or how, probably it was enemead up the backside. Then you sit on a "throne" and try to poop. This is all visualized... [ more ]
Jan Dollar No, it is NOT the same as a pouchogram! The pouchogram is static and only shows a resting, distended pouch. The defogram shows the actual motion of the pouch during defecation. So, it is the ONLY test that would show if there is colapse or other dysfunction that is not visible on scope or pouchogram. http://www.rogerbeyermd.com/se...rocedures/defecogram Jan [ more ]
boy's mom thank you. Our GI just said a pouchogram is the same as a defogram but in a defogram I thought you had to simulate being on a toilet by sitting so would that make a difference? [ more ]
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J-Pouch ForumsGeneral Discussion
Can't gain weight after procedure, need advice
S ShelbyC
phonix2g I had my takedown in March and it took me all the way up to last month to start gaining weight back. I was 140lbs at 6'1" and now 163lbs. I'm not sure if you are into sweets but I buy little Debbie snacks and eat them all throughout the day. Swiss Rolls, Oatmeal Cream Pies, Cloud Cakes (basically Twinkies), and Cosmic Brownie. I've noticed eating high calorie fatning stuff like that throughout the day helps. It also takes a while for your system to start absorbing all this stuff especially... [ more ]
boy's mom My 13 year old son had a takedown in April and also cannot gain enough weight. He is on TPN for 5 weeks now ( overnight nutrition through a PICC line.) so I also will be interested in the answers here. We were adding peanut butter to shakes, oatbran hot cereal and with bananas to add in extra calories. The oat bran was to take the place of something like metamucil which he thought was disgusting to drink to bulk up the stools. He was told the ensure would go thru him pretty fast. [ more ]
Spooky Shelby, hello! I had the same problem as you. Gaining weight after my colectomy was a real struggle. I'm 5'3 and at my lowest I was 86 pounds. I should mention that after my colectomy, I had an ileostomy for 2.5 years. The hospital put me on a weight gain regime; they wanted me to be at least 100 lbs before even considering a return to work. Weight can be harder to gain especially if you were sick a long time. With me, I was completely NPO and on TPN 3 weeks; I had nothing even remotely... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Too much cuff- need to redo surgery?? twist in pouch
BM boy's mom
boy's mom Thank you Liz11 I think a defogram test would be meaningful. Is surgery the only solution for efferent limb syndrome? In the most recent scope (which is new since my original post in this thread)severe cuffitis was the problem -with the slight twist in the pouch being considered minor in relation to the cuffitis. I would assume a defogram could be done in NYC or LA, not just Cleveland, but so far our drs in both places have not suggested. I will ask. How long is "a while" to get the rectal... [ more ]
liz11 boy's mum- I definitely think a defecogram would be in order. That is a test where they can actually see all of the "mechanical" stuff going on when emptying. That is the test I had which gave them the definitive answer that I had efferent limb syndrome (though it was initially diagnosed by Shen within 10seconds of him scoping me) AND my entire pouch was collapsing on itself when emptying because it was too large. Also - if he was prescribed rectal meds - sometimes you have to stay on them... [ more ]
vstRN boy's mom - I am so sorry that your son is having to go through this. As an adult, these surgeries have beaten me down both physically and emotionally. It must be so difficult for you to have to watch your child go through this I really hope the redo will be the answer for him. I had to go through a pouch advancement even though I had just 1 cm of cuff left. VERY frustrating. As TE Marie mentioned, I would definitely do some research of surgeons who have experience with hand sewn. While most... [ more ]
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J-Pouch ForumsPouchitis
thick stool - now what to eat?
clz81clz81
CTBarrister I am with Jan that if you have a stomach bug the bowel slowers only slow down recovery and the best course of action is to drink lots of liquids and soups and not try to slow things down but rather flush it out of there as quickly as possible. Just think of a toilet with an atomic flush vs. one that you have to flush 3 or 4 times. The goal is to get the crap out of there as quickly as possible! [ more ]
clz81 Spooky, I really think if you give it a bit more time, it will subside. I think as long as you are feeling ok otherwise, it will just take some time to regulate. I remember feeling completely normal after my flu bug, but it just taking forever for things to get back to normal. After 2 weeks of liquid BMs all day long, I was thinking "are you kidding me?" It seems totally backward to me though. I figure, us colonless people should rid the virus much quicker as we just have the small bowel and... [ more ]
Spooky Thanks, Jan! I had actually considered that with the imodium. I didn't take any for the first 3 or 4 days. Sometimes I think it's better just to get everything out. I have upped the fluids and I'm still doing the probiotics. Unless this gets worse, I'm going to try to ride it out through the weekend and then see how things are to start the week. I hope this is not a secondary bacterial infection. We have been having a lot of BBQ this summer... [ more ]
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J-Pouch ForumsGeneral Discussion
Align or Culturelle?
SpookySpooky
Spooky Yes, I could cross to Detroit through Sarnia or Windsor which are always much, much quicker. Unfortunately the drive is significantly further (4-5 hours). The Buffalo/Niagara/Fort Erie crossings are the closest but unfortunately have the longest wait times. The Peace Bridge sometimes is 3 hours! One of the reasons I don't go to the States as often as I'd like to, even if their probiotics are cheaper. [ more ]
CTBarrister Spooky, You may want to try different border crossings. I recently crossed the Canadian border at Highgate Springs, Vermont at 11:00 am on the 4th of July, a US national holiday, and had only a 15 minute wait to get into Canada. Coming back into the USA on Monday July 8 via I-87 to New York the wait was under 10 minutes. The guards on both sides of the border were pretty cool. Unfortunately I have no plans to travel to Toronto in the near future, otherwise I would bring you the probiotic... [ more ]
Spooky It's probably free shipping over $45 for orders within the US, not internationally; that is if they even ship some products to Canada. Certain products can't be imported or shipped internationally. I've also been dinged on shipping and customs charges in the past which actually exceeded the value of the product I was having shipping, so I'm wary. It's about a 2 hour drive to Buffalo from here but the big issue is the lengthy border crossing and based on past experiences, it's not worth the... [ more ]
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J-Pouch ForumsGeneral Discussion
how long before suppositories/enemas work?
BM boy's mom
boy's mom Thank you. Would it make sense to take the oral meds AND the rectal suppositories for more of a chance to work? [ more ]
Jan Dollar Ideally, you want to retain the Canasa for 3 hours, or a minimum of 1 hour. Make sure to administer after emptying the pouch. Usually, dosing is once a day at bedtime, but twice a day is not unusual for severe or stubborn cases. Once things begin to calm down, he should be able to retain them longer. If he can't retain them at all, ask about oral meds, like Pentasa or Azulfidine. Jan [ more ]
boy's mom Thanks - (I made a mistake when I wrote "enema". Does anyone take canasa 2x a day? How long do you make sure it is in before you go to the bathroom? Thank you! [ more ]
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J-Pouch ForumsGeneral Discussion
First time w Pouchitis.. Have ?'s
RM Randi M
TE Marie Jan, can you get too much bacteria from probiotic bacteria? I know it's good bacteria but I was of the opinion that there was never too much good bacteria. Then I remember back to when we had tropical fish that were sick. My mother was giving them their medication and thought if this will make them better then more will cure them faster - they all died. [ more ]
Jan Dollar In addition to the above, yeah, taking antibiotics even without pouchitis can improve your function and make you feel better. There are two reasons for this. One is that they usually reduce the stool output/volume (because much of our output is bacteria). The other is that you can have bacterial overgrowth without having pouchitis. If you are due for an exam anyway, I'd suggest scheduling a scope before requesting more antibiotics to see what, if anything, is going on. Jan [ more ]
suebear I've only had pouchitis once and took Cipro for it. After I finished the Cipro Rx I didn't feel well; although I didn't feel pouchitis-y either. In my case I had a Cipro hangover which my surgeon said was normal. Give yourself a few days and if you're pouchitis symptoms don't regress, you too could just be suffering with a Cipro hangover. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch & incontinence
S saharagold
ljk Is this why they advertise the leakage product at the top of the screen, it must be common? like I said I will do anything and everything to avoid this, so any advice would be great?? [ more ]
ljk Wow reading about this incontinence really does scare me. What if you plan ahead your meals , like having a schedule everytime you eat. lkie at 8:00 am breakfast snack at 10 o lunch at 12:00 Snack at 3:00 dinner at 5 o then last snack at 8:00, then of course drink as much as you can through out the day, would this help to prevent this? I know most of us work and may have to adjust to a schedule that is right for them! I know having my illeostomy I never had this problem, when I had time to... [ more ]
Scott F There's a little prep for pouchoscopy, and a fair bit of variation, but it's nothing like a colon prep unless prescribed by a sadist. [ more ]
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J-Pouch ForumsGeneral Discussion
Exercising Post-Takedown
kblgalkblgal
kblgal Hmm... I'm pretty small (4'10", 120 lbs). Maybe 3 lb weights, very slow? I do want to build my strength back up! Just nervous, but doing a lot better after the 2nd surgery! [ more ]
Scott F It may be worthwhile to take a flexible view of what constitutes weight training. Lighter weights (even substantially lighter weights) lower the risk considerably, and can be quite effective with different approaches (e.g. many reps, super-slow technique, etc.). [ more ]
kblgal Just wanted to say I jogged both yesterday and today with no problems! I'm probably going to avoid weight training for awhile. [ more ]
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J-Pouch ForumsOstomy & Skin
A real side splitter!
EricEric
Eric Actually, yes, it is, I've never had a defective bag until now, I'm hoping its just an isolated incident. [ more ]
Pluot This isn't your first defective pouch right? Might want to look at a different brand or at least a different batch... [ more ]
rachelraven Mine did. When I had my loop. It just crashed right open and off of me, dousing me with poo. Luckily I was at a department store, and my mom bought me a new outfit, though I cried like a baby. I was only 19, and just humiliated. [ more ]
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J-Pouch ForumsGeneral Discussion
private message
D dawn58
Jan Dollar Yes, CT. The last PM notification I got was June 26. Not sure if there is a correlation, but that was also the date that our resident troublemaker last registered (with three different screen name registrations). This site has been hacked before. I will send an email to Bill J to alert him to the issue. It is out of my level. Jan [ more ]
CTBarrister Mine was also shut off, and thank you to the thread starter for starting this thread and alerting me to the problem. There were PMs sitting in my mailbox since June 30 which were not responded to because I was not notified of them. The problem happened some time between June 23 and June 30, based on June 23 being the last PM of which I had email notice. Someone then shut off my PM box's automatic notification by email without my permission. Anyway, I am now once again on automatic... [ more ]
Jan Dollar Liz, You are right! I noticed that my PM notifications were off also. Must have been part of some update or something. I guess I didn't notice because I come her often enough to see the PM alert at the top of the forums. Jan [ more ]
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J-Pouch ForumsOstomy & Skin
Using Vent/Filter Bag
Lynne2Lynne2
itsnotsherry I do not find they work with an ileostomy. Stool is too liquid. I use ez vents. It sounds complicated to attach to pouch, but it really isn't. I LOVE these. I prepare about 10 pouches at a time, so I am always ready. They are inexpensive and work, really worth a try! Best of luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Can stool color indicate ileus?
DebraDebra
Jan Dollar Oh sure! The more "raw" the bile is, the less digested the bile acids are, so certainly more butt burn is on the menu! Jan [ more ]
Debra All I know is whenever this color shows up, butt burn is not far behind. (Double-pun? Ouch!) [ more ]
Jan Dollar It is one of those "it depends" things. Stool color basically changes based on how long it has been in your system. It starts out green (bile), then as digestion progresses, it goes through color changes of orange to brown. The closer to green it is, the quicker it is moving through. Different things can precipitate quicker transit. It could be diet related, infection, and yes, partial obstruction. With obstruction, the peristalsis speeds up, in order to try to move the obstruction through. [ more ]
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J-Pouch ForumsOstomy & Skin
Donating old supplies
LesandiegoLesandiego
Lesandiego Thanks Liz! I just sent an email to Girls with Guts. Site says they will start accepting donations in July, so I guess that's now! Will post later to let you know how smooth the process works. [ more ]
liz11 Here is where I have donated supplies many times in the past many years: https://www.ostogroup.org/ Also girls with guts just started accepting donations to redistribute to those in need. http://www.girlswithguts.org/images/poop.pdf [ more ]
Pluot My WOCN takes them and donates them to an organization that coordinates distributing ostomy supplies to ostomates in need. She told me I could bring them to her after my takedown. I will get the info for the charity at my next visit and post it here [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch-small leak
B Beth02
Bergie77 Pouchomarx: can you describe your pouch spasms with pouch sinus? Do they create urgency and pain is somewhat relieved when you have a bowel movement? [ more ]
Pouchomarx NO, I STILL HAVE MY POUCH. those procedures are not cheap! just the procedure is $1600.00, not including the procedure room,labs,supplies,pathology...I have fought with my insurance to pay the actual procedure, they consider it experimental. I had it done twice and could not afford another one. I just now got the Cleveland Clinic to write both of them off. it has been a nightmare and a lot of time and frustration. I had really bad cuffitis and when inflammation finally went down after a few... [ more ]
Beth02 Pouchomarx so did you redo your pouch or did you decide to live with the ileostomy [ more ]
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J-Pouch ForumsHelp! Need advice now!
Partial Obstructions
K KiwiPoucher
clouseau Unfortunately I have a lot of experience with this and it just started happening again with me. As soon as I feel the pain I go in a very hot bath, massage my stomach and drink cranberry juice(it used to be red wine which is better but I am on tintazole so no alcohol). I have strictures which Dr Shen dilalates every 3 months and crohns. [ more ]
rachelraven You have "diarrhea" around the blockage, because the liquid can pass around the more solid blocked material. That's a pretty common occurrence with an obstruction. [ more ]
KiwiPoucher I agree, massaging helps and hot water bottles! Do you find it better when you are lying down? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouch problems in the first month post takedown
G Golfdrumst
CeeeeCeeee As mentioned, the suggestion to stand up and then sit back down helps! Gravity is the key here. That is one of the reasons walking helps everything move on down and out! Try to be patient. You'll learn what your new plumbing prefers and go from there. Best wishes! [ more ]
Lesandiego Your pouch is still expanding. Eventually, you will decrease the frequency with each passing month (say a prayer). Initially I was going about 10 times per day. I am now 3 months post take down and my doctor states that I should be going 4-6 times per day. With my Rx of Lomitol and Bentyl, I have been able to achieve an average 5 times a day. You can try immodium, but it did not help me much. [ more ]
clz81 have you noticed things getting worse or has this been since takedown? i definitely agree to give it some time if this has been the pattern since takedown. however, if you were have less frequency and urges before, you may have developed an early case of pouchitis. my first case was very obvious. i was doing amazing for my first few weeks post takedown, then things took a bad turn. i went in for a scope at 6 weeks since i had many pouchitis symptoms, and they did confirm it was pouchitis. [ more ]
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J-Pouch ForumsGeneral Discussion
Offensive Private Messages
Jan DollarJan Dollar
Jan Dollar Thank you! If you want to send a PM (private message), just click on the screen name and choose "invite to a private topic" from the drop down list. Jan [ more ]
ljk Jan, Was not sure how to privately message you but I just wanted to Thank you for all your advice and to let you know how truly greatful I am to have met you!! LJK [ more ]
Jan Dollar Yes, remove your email. You can aleays exchange email addresses through Pivate maessaging. You don't want to have to change your email address because of horrible emIls. Jan [ more ]
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J-Pouch ForumsOstomy & Skin
Last Question for Awhile (I hope!) . . Thick vs Thin?
Lynne2Lynne2
chiromancer My opinion is just let it be.I dont use anything, though I could see there might be special situations where I would.I havent had hydration issues. My output varies a lot, from liquid to paste. I just want it to keep working and not plug up. The one partial obstruction I had was with a loop ileo, before the J pouch take down, and I was using immodium at the time perhaps coincidence but maybe not. [ more ]
Lynne2 Ad, it has been a long time! Glad to hear from you. Thanks for the helpful post. Hope things are improving for you. ISeeUC, Liz and Jill, your posts have consistently helped me in meaningful ways during my transition to perm ileo. I can't imagine I'd be doing this well without you! [ more ]
liz11 my preference is toothpasty consistency. however, like jill, I really don't bother worrying about any of it now. Seems it just varies on its own so very much. Plus I have SIBO, very bad, so I had to stop all immodium. I don't like the real liquidy bag, but I just empty more when its like that. [ more ]
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J-Pouch ForumsOstomy & Skin
Probiotics with No J-Pouch?
Lynne2Lynne2
Lynne2 Wow - that's a surprise that Dr. Shen doesn't recommend them. I'm beginning to think that fermented foods and yogurt might be the better approach. It seems like focusing on bolstering certain strains could lead to an imbalance. And how to know which strains? On the other hand, I have noticed improvement in the past when I've used them. It intuitively makes sense to me to feed the good so they an overpower the bad. and then theres the question of prebiotics. Hmmm. . . If I come up with any... [ more ]
liz11 I don't bother with probiotics. the meister shen doesn't believe in them. They cost too much. And when I tried them in the past, they just increased gas massively. With that said.. I do eat healthy, keifer, yogurt, etc... [ more ]
Lynne2 I think I might have asked too many questions or sounded too confused in this post. Hope this makes more sense: Does anyone on here with an ostomy take probiotics? If so, what kind? Thank you. [ more ]
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J-Pouch ForumsGeneral Discussion
dilated cardiomyopathy
B Bodoni
Jan Dollar Sorry you're having to deal with this. I don't have cardiomyopathy, but had my share of cardiac issues a few years ago. It can be unsettling, to be sure, and I know that cardiomyopathy is not something that just goes away. But, it is treatable and I hope you tolerate the medications. I take a beta blocker for tachycardia and have no issues with it. Presumably you are being followed by a cardiologist. Good luck! Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
recent surgery not happy looking for alternatives
ML my little man 2
Jan Dollar I am confused. If a j-pouch was created, why is there no plan to connect it? My other question is why would the loop ilestomy be an improvement, since poor appliance seal is a typical complication? If a mucous fistula is absolutely necessary as a long term and/or permanent fixture, I would think the best solution would be to have the ileostomy and fistula on opposite sides of the abdomen, so that both appliances can get a good seal. I am not sure he would be a candidate for a BCIR or Kock... [ more ]
my little man 2 hi all yes we have tried all different products and have 3 stoma nurses and the manufactures come out and try different products none of which are working. to answer your question no h is not being reconnected he only had the j pouch created and the mucous fistula because of the chronic infection in his rectum which was all dead. they were unable to sew the rectum shut because of his age and the risk of effecting his reproductive system so they had to get creative. he did have an end ileo... [ more ]
EP I had a mucous fistula and end ileostomy but had 2 bags. A very small bag on the fistula and another one on the ileo. However to make it stay and improve the fit to stop leaks the stoma care nurse had me use rings under the ileo stoma bag and then an extra half moon seal to make it stick. I also tried different makes / types of bags to find the best one. I think its worth talking to your stoma care nurse to see shat else can be done to make life more bearable. I really hope you find a solution. [ more ]
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J-Pouch ForumsGeneral Discussion
Failed J-Pouches
F Future_Jpouch_Patient
liz11 ep, Dr. Shen, the infamous GI doctor at Cleveland Clinic, has had much success with needle/knife and doxyclycline injections for sinuses. He has been doing this for several years now. This link refers to a paper that is over a year old, might I suggest you share it with both your GI doctor and surgeon. http://www.ncbi.nlm.nih.gov/pubmed/22390150 [ more ]
EP I am just recovering from surgery for loop ileo needed due to pouch sinus caused by chronic pouchitis. Is there any treatment for healing the sinus? Is there any hope of healing and reversal? Thank you. [ more ]
Jan Dollar In the case of end ileostomy, the j-pouch is removed and discarded. Sometimes, they can reuse the j-pouch to make a Kock pouch, but not if it is riddled with disease. This is mostly in the cases where there are functional issues, like poor sphincter function. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Heartburn ugh
M mads101
rachelraven Some people have stated that burning can be related to bacterial overgrowth. There are diet changes to make, if that's the case. I'm sure someone who has it could chime in, I'm not affected by that. You avoid carbs and sugars on the diets they prescribe. Could also be GERD (gastroesophageal reflux disease), which is more common. You'd take an H2 blocker or Proton Pump Inhibitor if this was deemed the issue. Like the person above, you'd go on Zantac or Pepcid, or Prevacid or Prilosec. You... [ more ]
Bodoni I used to have bad heartburn. My doc prescribed Zantac prescription strength. Worked fine for me. (OTC was too weak.) A little bit of Pepto Bismol won't hurt 'til you talk with your doc. [ more ]
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J-Pouch ForumsGeneral Discussion
Three Step Surgery at Cleveland Clinic?
P Pkitty
Mike H I am having the 3 step at the Clinic as well. My surgeon also said that is what he prefers. I am in between step two and three and just waiting on the takedown. I have spoken to a number of people that had the 2 step that were in the hospital for many days. After my first surery I was released in 3 days, after the second surgery I was released in 3 days and the surgeon said the same should happen after the takedown. Many of the 2 steppers that I have spoken to were in the hospital for up to... [ more ]
dawn58 I guess I count surgery time as the actual surgery. Also, I never let them give me anesthesia or even any type of IV until I am in the operating room. There's no way I sit with an IV waiting to be taken in. If there is a delay of any kind and usually there is, a patient could be sitting with an IV for hours. And, as far as being in the recovery room, my parents are always there. Unfortunately, I have way too much experience. Rachel, since you were already in the hospital once you must have... [ more ]
rachelraven I was hospitalized for 2.5 weeks prior to surgery. I was already there, as an inpatient. That was likely why I had such an early start time. MY 5am start wasn't surgery starting RIGHT AT THAT TIME, but my preop meds, my labs, and trip to preop holding was between 5-6am. Anesthesia started with me around 6:30am, and surgery started around 7am. I spent about 3 hours in postop recovery before being wheeled to my room very late in the day. I work in a teaching hospital, too, and yes, preop... [ more ]
See all 27 replies...
J-Pouch ForumsGeneral Discussion
Anal Canal, Anal Verge, Cuffitis
P Pkitty
rachelraven Mine was clear cut UC when I had it, and I developed a perianal fistula recently. My surgeon still doesn't think I have Crohns, though, as I have NO other symptoms of it, at all. He thinks the irritation I developed from straining with my first real bout of pouchitis likely was the culprit of my fistula, though it is hard to prove. These issues can strike UC patients, though, and bowel surgery like ours also increases the risk. UC article: http://onlinelibrary.wiley.com...d2e2bd567974453e3c5e [ more ]
vstRN Sorry, not much help here. Need to correct myself and say I always had severe disease in the rectum and never had any perianal disease - always very clear cut UC and not crohns. Good luck with your decision! [ more ]
Pkitty vstRN - are you saying that you are not surprised you ended up with cuffitis later because your inflammation included the anus? And if it is typical UC for people to have inflammation include the anus, why don't they get cuffitis since the anus is left in tact after the surgery? That's what I am wondering about. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Anal Skin Tags
P Pkitty
Pluot I allegedly have one... a fellow scoped me once and noted it in the procedure report. My GI (the fellow's supervisor) and my surgeon have both examined me many times and never noticed it themselves. So- can anal skin tags disappear on their own? IDK. I don't worry about it. [ more ]
joshpr I have one and it was never an issue. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Gurgling belly, continue to leak and lack energy
C CedarsFam
Debra And PLEASE, remember that no two patients are alike. I would have jumped off a bridge by now (takedown 10 years ago) if I expected to be as good as some of the better stories here. I am in the 5-15% that did not escape without some complications. A good day is any time I have 12 trips to the bathroom, none of them particularly urgent. Scar tissue and stricture at the anastamosis have me doing self-dilation several times a day. I have incisional hernias that will need repair when they become... [ more ]
skn69 It could be anything from what everyone has mentioned previously: dehydration, too close to post op, too many times in the bathroom to lack of sleep, anemia, PTSD ( face it, this whole journey is traumatic enough without having to poop 23xs day, accidents, exhaustion ...)and PTSD can throw your system off dramatically leading to anger, exhaustion, sleeplessness, lack of appetite etc...and then there is thyroid which can cause the exact same symptoms so no matter what is may be, you should... [ more ]
phonix2g I would go to see a hematologist. They test for everything. They took 10 viles of blood from me. I'm sure you have some deficiencies. I would also ask for a B12 shot when you're there. I was anemic for a long time which cause me to be extremely tired and lethargic. I've been taking iron pills. Are you having diarrhea? Have you changed anything in your diet? Do you have a fever? Lomotil is the best for antidiarrheal. Ask you Dr for a prescription? [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
weight gain
L lab
cassiecass Nice Nurse well said You are so correct on the lack of education into nutrition for Mds. I wonder how many of us have had their vitamin levels checked? I have not but will shortly. As a thyroid patient who has gained weight with an ok Tsh. I know many or most Mds know so little about thyroid disease.This is a known fact and better yet they also do not know or understand menopause.So I wonder what they truly know about J pouch.We must remember today medicine is practiced in body parts.You... [ more ]
Nice Nurse It is not simply a matter of calories in, calories out. Not for j-pouchers and not for women nearing menopause or post-menopause. Having a leaky gut, celiac, colitis, or any other irritable bowel problems, for years can cause weight gain OR loss due to inflammation. The leaky/damaged gut leaks undigested proteins into the bloodstream where it binds to tissue causing long term problems that are not easily remedied. Also, most people with these problems are severly malnourished due to the body... [ more ]
skn69 There is intake-output (what you eat as opposed to what you burn) that is the base for your caloric intake...if you are sedentary you need less, active if you need more...but you then need to figue in your muscle mass (muscle burns more calories than fat), your body's fixed set thermostat called metabolism (how fast or slowly it burns calories), your age (the younger you are the faster you seem to burn calories), your body's plateau weight (your body gets accustomed to a certain weight and... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Successful Jpouchers
P Pkitty
Nice Nurse I totally agree with all the posters, especially with the one who said family support is a key. Most people turn to support forms to rant/complain. It's rare to hear the good stories. That said, it's also a matter of expectation. I was so sick with UC, my choices were all but taken away from me in 1995 when I had my j-pouch. I had it done in one step. The recovery was tough. I was a young mother with 3 small children. Fast forward nearly two decades, and I am doing ok. Perfect, no way. But I... [ more ]
hfc I was 45 when I had my colectomy/j-pouch in 2004. I am now 54. I am a cardiac electrophysiologist who probably ignores a lot of things to do with my body (time to see a dentist, can't remember the las time I went!). I had sigmoid UC, was getting to the point of despair because of multiple and unpredictable BMs/blood showers and very painful cramping without warning from my gut. I tried a lot of things. The final go round was cylosporine which did nothing. One of our NPs developed UC; she... [ more ]
Mike H Go to www.ihaveuc.com There are many successful J pouchers on this site. I actually like it better. It has a load of success stories and each story is different. The website actually got me ready for my sugery more than I realized. Go to the surgery tab and start reading. i have even added a couple stories myself about my two surgeries. Mike H [ more ]
See all 20 replies...
J-Pouch ForumsGeneral Discussion
No Good Routines
T TeresaAnn
TeresaAnn I tried the fiber and it is helping. I also contacted the doctor but I am having no pain. [ more ]
Scott F I agree that contacting the doctor is the next best step. I would usually expect pain to be a prominent feature of an obstruction (more than constipation), but it wasn't mentioned. On reflection, adding bulk (fiber) could be a bad idea without an explanation of what's causing the symptoms. [ more ]
Jan Dollar 2-3 days without any movement is not normal by any stretch. It sounds like you have a chronic partial obstruction, could be a kink from adhesions, or maybe an anal stricture. But, constipation followed by loose, frequent stools often means that there is an obstruction and when the pressure gets high enough, loose stool comes around it. You need to tell your doctor about these symptoms, and if you are taking any bowel slowers/fiber supplements, you should stop them until this is sorted out. Jan [ more ]
See all 4 replies...
J-Pouch ForumsK-Pouch Korner
Enzymes for the Immune System
J Jasmine 2
Nikino ❤️
skn69 Woodstock, I do not ever take coated of LP (prolonged release) pills...they leave my body long before they are digested but when my pouch is being pouchy, it chuck things up and out long before they can be absorbed..even the simple stuff... Some tricks are cutting or crushing pills but you need to ask your pharmacist first if you can. Sharon [ more ]
woodstock69 We were always told not to take enteric coated pills such as this sera enzyme suggested [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Risk factors for pouch inflammation/complications
K killcolitis
Pluot So, when you're logged into 23andme you can use this link to view your genotype for the SNP: https://www.23andme.com/you/ex.../?snp_name=rs2066847 This is the same as the third Crohn's risk SNP shown on the Crohn's page under Health Results. For what it's worth, I totally don't understand this but it seems like I *don't* have the mutation but my (Crohn's ileitis-having) mother does. I also have a brother who has the same mutation and doesn't have IBD at all. A couple of the other SNPs... [ more ]
killcolitis Okay, I was wrong Liz, it won't necessarily be flagged by 23andme. I'd assumed it was one of the three main nod2 variants which do get flagged, but I guess it's one with a CD association but a lesser one. Here's the snpedia link - it lists the risk alleles for CD which I'm assuming is what they're using in the study? Not sure. http://snpedia.com/index.php/Rs2066847 [ more ]
killcolitis They do, Liz. You need to type the SNP (rs) number into their general data. If you had it though, it would have come up as a risk for CD and would have been flagged (I know b/c that's how I found out my daughter had one of the three). My daughter's case is complicated by the fact that she's half Indian (me, and these common variants don't exist in the Indian population at ALL) but my brother has UC and half Italian (and they are common there but no IBD other than a first cousin with UC on... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Muscle Relaxers
P phonix2g
PDXDavid I take diazapam for rectal spasms. Haven't had a problem with leakage. [ more ]
Jan Dollar I take muscle relaxers, Flexeril, and now Robaxin. Never had any gut issues with them. But, it was a good 10-12 years post op before I started needing them. I don't take stronger stuff like Valium, Soma, or baclofen, that are more for acute problems or spasticity. Jan [ more ]
phonix2g No I don't take them for my bowels I take them for other parts of my body. [ more ]
See all 4 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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