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J-Pouch ForumsGeneral Discussion
osteonecrosis of the knee
L lab
JeffDC My brother had uc a lot longer than I did, and was also on prednisone much longer than I was. He just had his second hip replaced in May; the prednisone ate his hips. [ more ]
lab I am so happy to hear that you feel great after your knee replacements. I am starting week four. I still have some swelling that I ice a lot. I am in pt three times a week and it does hurt, but I am doing it! Thanks for the advice and encouragement. I am looking forward to pain free days. [ more ]
Rockwall63 Lab, I had both my knees replaced in June 2009 (avascular necrosis). Now I feel great. No pain or swelling. Full range of motion and complete confidence in movements (joint not bowel!). The only thing I have is a little stiffness, but it goes away after a little warm-up. But >>> You've got to do your PT. It's going to hurt. A lot. But grind through it. Every rep and exercise that is required. Further, when the therapist manipulates your knee ... forcing it in certain directions --... [ more ]
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J-Pouch ForumsGeneral Discussion
Family Therapy and UC?
temotytemoty
TE Marie I did not receive my UC diagnosis until I was 40 but had it for years before then. I told myself it was colitis, like IBS. I didn't have it as a child but was abused by my mother as a child until I was able to move in with my father at age 13. In the 60-70's the mother always got the child until the child was old enough to tell a judge where they wanted to live. Fast forward, I was receiving massages every other week for my fibromyalgia and I had the most horrible UC accident ever coming... [ more ]
skn69 It certainly does aggravate it! I cannot attribute family stife to the origin of my problems but it definitely made things much worse. I met a lot of young people at the time, in group therapy at the Sick kids hosptial in Toronto, that were suffering from various mainifestations of IBD...we were a small group with 2 therapists and about a dzn teens...none of us were "enjoying our teens to the fullest" but suffering from both family conflicts & IBD. My only question is if it was the IBD... [ more ]
Lesandiego I did not develop UC until my mid 40s. Therefore, it was not my childhood family stress, but my relationship with my husband who was on meth and being a Landlord that caused insurmountable stress for me. Our ugly divorce threw me over the edge during my last flare. I am not saying stress "causes" auto immune diseases, but it certainly exacerbates the flare. [ more ]
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J-Pouch ForumsPouchitis
Prilosec, Sulfasalazine for Pouchitis
ElmerFuddElmerFudd
Rebe0505 asked dr shen about both sulfa and prilosec ..for what its worth here is his answer... "both agents have not been studied.would be careful using prilosec for fear of c-diff...sulfa has been empirically used with both gut and joint symptom.." [ more ]
ElmerFudd No side effects for me, other than some indirect ones: 1. If I miss my Prilosec, my body creates more acid and I get bad heartburn. FYI - if you are on PPI's long-term and want to stop, substitute an acid reducer like Xantac and then gradually wean off of it. 2. It has been shown that long-term use of PPI's (about 3 years) can reduce B-12 absorption. Checking B-12 levels after several years is a good idea 3. Sulfasalazine can affect Potassium levels and I have to get my levels checked every... [ more ]
clouseau Thanks for posting this. I would love to hear if anyone else has had experience with these and also what are the side effects compared with antibiotics.. That would be very helpful. [ more ]
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J-Pouch ForumsGeneral Discussion
Weight Status
Kathy AKathy A
ccanepa456 I have the same problem with gaining weight and question if I just need to get used to the fact that I will always be underweight. I try to eat all the time even if I am not hungry. When I had my ileostomy bag I gained some good weight but ever since takedown I lost it all and just keep losing. [ more ]
GraceB I also have a problem with weight gain. I lost 30 lbs from uc Had the surgery J-pouch I can not gain a lb . I also try everything I guess that is the way it is. I was having protein drinks but I am starting to give up on that to because of the gas it causes. Good luck to everyone [ more ]
CeeeeCeeee Our situations are such an enigma! I have a challenge keeping my weight down! It seems that everything I eat sticks with me! I guess both situations are difficult to deal with. Best wishes! [ more ]
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J-Pouch ForumsHelp! Need advice now!
I think I messed up my J Pouch
CalifornicationCalifornication
Californication When you say necrosis (which is a terrifying word in itself), do you mean necrosis of the pouch or the of the skin tags? I can't even imagine. No odor today and I did not eat meat except for bacon bits sprinkled on salad. I am going to the doctor tomorrow for a referral. It occurred to me the problem started when I introduced a sprouted grain bread into my diet. Both times I'd eaten some earlier in the day. I wonder if I'm sensitive to it! Thanks for all the help. [ more ]
Endi I would write down EVERYTHING you want to tell your doctor so you don't leave anything out. I don't think you're to blame on anything here. I think when you tried to tell your first doctor that something was wrong, he/she should have taken it seriously and followed up on the matter. I think you will be fine. Just go to your new doctor and let him/ her know that something is not right and you need then to take you and your concerns seriously. I think a heart to heart conversation like this... [ more ]
skn69 Could there be some necrosis going on? If I remember correctly it gave off an awful smell and was painless so I didn't know that it was there. There was a tell-tale whiteness around the edges of my suture lines where the tissues were necrotisying/dying... I agree with Jan, Time to call your doctor. Sharon [ more ]
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J-Pouch ForumsK-Pouch Korner
Tell your doctors about this site.....
J Jasmine 2
Jasmine 2 Tell doctors about J-pouch.org so they can see for themselves what it's like to have or want an operation and the problems that come with them. Thank You!!!!! Advocate For Kock Pouch Procedure!!!!!!! [ more ]
Jasmine 2 I told Dr. Dozois about you Jan Dollar and Bill. So I hope they came here to see the J-pouch isn't the greatest surgery that they seem to think it is. I told them to read all the posts about problems with the J-pouch, and mentioned not sleeping all night and cuffitis. I also mentioned that I think they thought pouchitis was from the Kock Pouch.....not so, they need to do this operation everywhere. Let the patient decide, plus the cost of ostomy supplies is outrageous!!! I'm surprised... [ more ]
Jan Dollar Good idea Jasmine, but I don't think that any surgeons believe that the j-pouch is problem free. I think they believe it is the best option for most patients. It is truly unfortunate that the Kock pouch has sort of fallen by the wayside and so few surgeons are skilled in this procedure. We need as many choices as possible, as not everyone is a good candidate for a j-pouch. Jan [ more ]
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J-Pouch ForumsK-Pouch Korner
Mayo Clinic, Rochester, MN....needs to do Kock Pouches AGAIN!!!!
J Jasmine 2
Jasmine 2 It is so hard to believe that the Mayo Clinic doesn't do them. They fix the ones they've done, but they think they aren't being done anymore. So people don't be afraid to call the Mayo Clinic and ask for Dr. Dozois, Professor of Surgery....and tell them you want a Kock Pouch. The more they hear this the more they will be inclined to do them again. I can't say enough about my Kock Pouch.....Love It!!!!! Would do it again.... [ more ]
skn69 I couldn't say it better myself! Keep on posting it and get the word out. Sharon [ more ]
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J-Pouch ForumsK-Pouch Korner
Update on my valve dilation.....
J Jasmine 2
Jasmine 2 You need a medic alert necklace or bracelet with "Has a Kock Pouch .....(along with phone number of a doctor that knows what it is and what to do). I know what you mean, in my town they don't even know what a Kock Pouch is, until I tell them. They've never heard of it before!!!! Unreal, back when I had my Kock Pouch created....I thought for sure it would become the procedure of the future. I think they thought pouchitis was from a Kock Pouch.....well it isn't. My Kock Pouch lining looked so... [ more ]
skn69 They had to do the same thing for me, twice, in intervention radiology at Mt Sinai. Both times my valve was herniated and twisted up into the hernia (big ouch). Here I had to go to ER twice(God bless the goodwill of the interns here...they actually listened to me and got the guidewire divice and I got to keep it!). My greatest fear is that I one day lose consciousness and there is no one around to explain it to them in ER...and they just stick and flang and bag onto it...and then my pouch... [ more ]
Jasmine 2 Thanks Sharon, it's amazing what we come up with. When I couldn't get my catheter in, they used a wire in Interventional x-ray, like they do for a blood vessel. I didn't see the device, I wish I would have. I know that they had a very hard time (twice) getting a catheter in me. Each time it was a different size to widen the valve. Then the dilation in a different x-ray surgical room. It's very interesting to hear everyone's experiences with the Kock Pouch. Thanks for sharing. Just remember... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J pouch removal?
L Loobylou78
Loobylou78 Hi Jeane & Richard, Thank you both so much for replying. I have tried quite a few meds, steroids, steroid suppositories, antibiotics (ciproflaxacin and metronidazole). I have tried loads of creams to target just inside the bum, including one that's also used as a heart cream and relaxes the muscles. I have tried a mini irrigation kit and a large one which holds 500ml of water. I so want to keep hold of my pouch, but I also want to feel well again. My surgeon has also mentioned that to... [ more ]
Mysticobra Wow. Sorry to hear you are having so much pain and problems after 10 years. I and I am sure this whole community here feel for you. I don't have an answer for you.... wish I did and could help more here.. but I am sure someone here will chime in with more answers. Good luck and hang in there. Richard. [ more ]
jeane Have you tried any meds to help you like antibiotics or prior ibd drugs? [ more ]
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J-Pouch ForumsPouchitis
Pouchitis/Not Pouchitis
FM Former Member
mgmt10 You say you have bloody stools. I was always under the impression that pouchitis doesn't produce bloody stool. Could it be that you have a bad case of cuffitis? [ more ]
Jan Dollar Did they test for CMV (cytomegalovirus)? It is uncommon, but not unheard of, particularly if you are immune compromised. Jan [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Total body vibration
C Crystal<3
cmears ❤️
Jan Dollar Thanks for the description! I was envisioning those machines that have a big belt that goes around your butt and jiggles your fat at a fast oscillation rate that was popular in the 50's! Yes, this does sound like intense exercise. The work your body does to maintain balance is good whole body exercise, and this seems to really accelerate it. If your joints can handle it, your j-pouch should too. I know with my enteropathic arthritis, it would be a pain machine for me! So, I am not getting... [ more ]
skn69 I was told that they are great for bone density...but so is bouncing on a trampoline...anything that vibrates the skeleton apparently helps to build bone. I tried the power plate (the next big thing over here for the past 5yrs) a couple of times at an institue but never went back due to cost...I tried the occilating, vibrating plateform at a trade show last year (the newest next big thing) and ended up with a blocked sacroiliac for a month. The vibrations were fine but mixed with the... [ more ]
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J-Pouch ForumsPouchitis
resolved my very green looser stool issue
R Rebe0505
skn69 Glad that you found a solution to the problem...I agree that too much of a good thing can be too much! I just did a run of chewable probiotic gummies and Wow! what a huge difference in output. Things that had not been digesting for years were suddenly digestible in large quantities (romain lettuce, certain fruits like watermelon and other veggies). I had also cut out a lot of sugar from my diet and substituted fruit for dessert. The result was that I seem to have gotten the upper hand on the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Vomiting
C crazy
skn69 Are you a guy or girl? If you are a guy then I have no idea but if you are a girl....hormones. It is typical for women to have those exact symptoms just before or around their periods. If you are a girl with a pouch then those symptoms are felt in your pouch and it makes it worse. If you are not a girl then look into what it is you do or don' do at that time of the month on a regular basis. Some people react to travelling others to weekly meals eaten at specific places (Chinese on Fridays or... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Illeus
Paul HPaul H
skn69 So sorry but I have to agree with Spooky, You do not mess with an ileus, occlusion or blockage. The consequences can be terrible. Dehydration can lead to severe electrolyte imbalance and cause other nasty complications. I have a pure hatred for NG tubes but will beg them to put one into me if need be...no other choice. If acupuncture or other alternative treatments help then wonderful but do not ignore the signs of dehydration and anyone who tells you that it isn't dangerous or a problem is... [ more ]
Spooky I've had post-operative ileus. It sucks. The crappiest I've ever felt in my life (including severe UC and 3 major surgeries) was when I had ileus. Honestly, you probably should be in the hospital as this can be a life-threatening condition. As for the course, ileus typically has to resolve itself and it usually only does so with time; typically the prescribed treatment is bowel rest (ironic, I know, considering your bowel isn't moving), but you should be NPO (which means nothing by mouth -... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Feeling terrible.
K Kunga
TE Marie Kunga, You might also have a c.diff infection so a call to your doctor should be made if you don't feel better soon. ljk - Have you thought about allergy testing to see if you are sensitive to any foods? I had a bad problem eating after my surgeries and lost a lot of weight. As soon as the food hit my system everything started to hurt so I didn't eat much until it gradually got better. I had plenty of weight to loose and my nutritionist had me drinking a healthy plant based protein shake... [ more ]
Scott F It's not normal to be struggling a year after surgery. I can't tell from your post if you've definitely tied this to sensitivity to specific foods, or if any food can set you off sometimes. Basic techniques that help many people who are generally well include thickeners/bulking agentsw (like Meamucil, Citrucel, or Benefiber), bowel slowers (Lomotil or Imodium), and (for some) bacterial probiotics (VSL #3, Align). If no one has taken a look at your pouch you probably should have a... [ more ]
ljk Oh for got to add that when I eat something that doesnt agree with me. I usually spend most of my time in the bathroom, going number 2 like crazy!!!! Any advice is greatly appreciated!! LJK [ more ]
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J-Pouch ForumsHelp! Need advice now!
Fistulas anyone?!
Laurajp87Laurajp87
MicheladelfinaTX So sorry to hear what you're going through. I had two fistulas at the same time (an RV and one that was in the perianal area) and had to deal with the pain from the seton drain as well. Not sure about what they may advise long-term, but in the short-term, I found that the RX painkillers were no help. I got some relief by using anti-inflammatory meds and very frequent sitz baths as hot as I could stand them, which helped with both the pain and keeping the area clean. I hope this helps and... [ more ]
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J-Pouch ForumsGeneral Discussion
rectal pain/pressure
M MAS
MAS Marianne- Dr did say that I may have to have one done every month as well. Hopefully after a few I won't need it any longer. thank you for your feedback [ more ]
MAS CaySeeBee- thank you for the info. I am familiar with Canasa had to use it for years with UC. Spoke with Dr. this afternoon and I am having a scope done and Thurs to check out the pouch and determine what is going on. [ more ]
CaySeeBee Cuffitis is typically treated with Canasa, which is a suppository. I had my first bout of it in the spring. It's by no means fun to insert every night for 30 nights (my tip: make sure you're getting it in far enough. It will hurt but then you'll actually feel the pill get kind of pulled upwards by your muscles. If it's in right you should feel it going in but NOT after that! If you're a woman I would use the tampon analogy here) anyway, so while it's a literal pain in the ass, it is... [ more ]
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J-Pouch ForumsPouchitis
Pouchoscopy--No biopsies taken
John95John95
CTBarrister Thanks John. Dr. O is still my doctor and the information I posted above came from him. He is great. I get the sense that he talks to Dr. Shen on a weekly basis and learns everything that is going on at his old stomping grounds, the Cleveland Clinic, where he did his Fellowship. Dr. O basically has me under control but like some others I have a stubborn case of refractory pouchitis and can't get off antibiotics, much as I have tried. Scott, I hear ya on the unnecessary testing and... [ more ]
John95 Scott, I appreciate your input. How terrible that you had to undergo such a major surgery unnecessarily. I certainly understand your point about the possibility of excessive testing leading to poorer outcomes. I suppose our views on these sorts of things are mostly colored by our own healthcare experiences. CTBarrister, I was also a patient of Dr. O when I lived in your area. He was fantastic. You're fortunate to be in such good hands. Hope you're doing well these days. [ more ]
Scott F Certainly someone who's already developed dysplasia or cancer should be monitored. John, it sounds like you *might* be getting better care than in the US. One of the (numerous) reasons US healthcare has poorer outcomes than most of the developed world is that we've been programmed to expect more tests and procedures than are good for us. Every test has the risk (not small) of an incorrect result. Every procedure carries a risk of an adverse event. Most people without specific risks or... [ more ]
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J-Pouch ForumsK-Pouch Korner
Getting my valve fixed.......
J Jasmine 2
Batel Thank you so very much for the lead. I feel like a yo-yo being bounced between doctors and surgeons while I'm in great discomfort and pain. I will see what my gastro says about this since she comes from Stanford. It can't hurt and it's a short drive from San Francisco, so it's certainly worth the try. Anything at this point is worth the try. Thanks again and I'll keep you posted. [ more ]
DG78 Batel, I met with Dr. Cindy Kin at Stanford earlier this year to have her look at my Koch pouch because I was suddenly having problems intubating (1st KP 36 years ago at UCLA with Dr. DenBesten, then yearly revisions – last being 33 years ago). Dr. Cindy Kin came from the Cleveland Clinic and learned about Koch pouches there. I don’t know how many, if any, of the operations she performed herself while there, but now at Stanford, she is their new KP surgeon (their older expert KP surgeon has... [ more ]
Jasmine 2 My stricture was in about 6 inches almost to the valve end inside my pouch. Since I had my valve dilated, I feel the catheter needs to be left in so it can heal so the catheter will pass through. My valve is still continent since the dilation with the catheter left in. My worries are that my valve is so long, I'm afraid it will bend easily in the future. Time will tell. I had the dilation done by a doctor at Mayo Clinic. He said I may have to come back and have it done again. During the... [ more ]
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J-Pouch ForumsPouchitis
Only one antibiotic at a time?
J JD1943
CaySeeBee Thanks for the input. JD, your last sentence is what I've been telling myself lately. My GI is a brilliant clinician, but I've only been working with him for 3 years and this is easily the worst flare (and only real issue) I've had in that time frame. Otherwise I saw him twice a year for check ins/scopes. There were 11 rough years of UC, surgeries, pouchitis before him and my old doctor, who held my hand through it all, would absolutely have prescribed me both had he seen the last scope. [ more ]
Scott F The combination isn't very risky, and it's not like you got the Flagyl illicitly. Your GI will just need an update, however it turns out. Whatever you decide, good luck! [ more ]
JD1943 CaySeeBee. I've had my pouch for 15 years. I've seemed to get pouchitis around once a year or so. Maybe once every 9 months. If you can handle flagyl, then definitely do both. I've found that when my pouchitis is bad that I absolutely have to take two antibiotics at a time to knock it out. The case I have now is slight and I caught it early, so I'm trying just Levaquin. If I had caught it later, I would be doing both. Flagyl probably will help you. I just didn't want to deal with the side... [ more ]
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J-Pouch ForumsGeneral Discussion
Squatting vs Sitting
M mt
suebear No noticeable difference between the two for me. Sue [ more ]
Deedeeh hi there, i find squatting helps me empty a lot more fully than sitting. i am quite bendy so am able to get my feet onto the toilet seat and squat like that (am a yoga teacher hehe). i had my surgery in dublin about 5 years ago with john hyland at st vincents. who is looking after you? dee [ more ]
krittyd I don't want to scare you but my husband had his takedown surgery 6 weeks ago and the only way he can empty is by standing up. Sitting and squatting cause extreme pain and he can not empty completely. He has had a CT and MRI (still waiting on the results) in hope to find out if something is wrong. The Dr. seems to think things just have to work themselves out. Hopefully you will not experience this but wanted to let you know its a possibility. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
RV fistula question
K Kelsie
Bebekspor So yesterday my gynecologist found a little (2mm) hole near my perineum. I had previously spoken to my surgeon about passing gas through my vagina, and he said it could be a fistula and to keep an eye on it, to tell him ASAP if stool started coming from it. I'm going to see my surgeon on Sept 8th and I'm trying to be upbeat, though I am very nervous. What are the chances it'll heal itself? What should I ask him? Thank you, Katie [ more ]
jennym2 I also have a RV fistula. I started noticing the passing of gas through my vagina about this time last year and had some random leakage of stool. But it went away so i let it go. When it came back I went to my GI doctor and he said it was most likely a fistula. It was only my second time seeing him and he actually recommended i go back to Penn in Philly where i had my j-pouch. After a pouchoscopy, MRI and two EUA's they finally found mine. I had a draining seton put in, then they tried the... [ more ]
MicheladelfinaTX I developed an RV fistula just a couple of months after my first takedown. It started with gas pains that I would get in the middle of the night that I would have to contort myself into weird positions to release, and then when they did pass...it wasn't from the bum. Stool started passing through the fistula just a couple weeks later, though I had two exams and both my surgeon and an OB/GYN couldn't find anything. I was miserable and begged my surgeon to do an exam under anesthesia, which is... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Dark Stool
CC colonless commodore
Scott F This sure sounds like upper GI bleeding to me. Dark black "tarry" stools (melena) suggest bleeding from the esophagus or stomach (or thereabouts). If you're still actively bleeding you could get into real trouble, unless it's very slow. I'd get this checked out sooner rather than later. Did the vomitus show any signs of blood? [ more ]
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J-Pouch ForumsGeneral Discussion
Narrowing of pouch
F Fosty
Fosty Will keep you posted. I don't think a redo is in order for me. She feels the pouch is loose now and can't do much else as keep getting strictures and partial obstructions. I guess 10yrs in now with not many problems things start to happen. Will know more after scope on sept 4. [ more ]
sprice33 Fosty I have the same problems. I have been dealing with narrowing of my pouch for years. I have thought about going to Cleveland thinking I need a pouch redo and I have been in contact with the doctors there. But I am from Massachusetts area and the last surgeon I seen said I do not need a pouch redo. The narrowing is taken place in two areas, one near the rectum were the staples are located and further up anastomosis area was. I am very gassy and bloated. This has been a very frustrating. [ more ]
Fosty Thanks for your reply. I live in Toronto so would not be able to see them. Apparently it would be a better quality of life to have the Ostomy permanently. So you are doing the 2 surgeries all over again? Lynn [ more ]
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J-Pouch ForumsOstomy & Skin
Newbie
DH Donna H
Holly HM Y'all have been such a help. I am going to have my pouch removed October 3rd and I am seeking all the information I can get. thanks [ more ]
mrskpollard I was pregnant when I got my ilestomy so I completely understand how you feel about the bags leaking. We had a lit of trial and error. Its almost impossible to get the bag to stick with ut being ao cloae to the incision. We would off set the hole you cut for the stoma and angle the bag. As far as emptying the bag, I did it every time I went to the bathroom because I was self conscious about it. They have a lot of different pouches out there and ince you find one that works for you it goes so... [ more ]
PoucherInTO Hi Hi! No, there weren't any problems in removing my jpouch. My surgeon expected there would be way more scar tissue and adhesions (after 18 years with the pouch) but she said it really wasn't bad at all. One of my fallopian tubes had completely adhered itself to my pouch, but they were able to release it and didn't remove the tube. I have a very low (almost zero!) ovarian reserve anyway, so bio children are not in my future, and I'm only 33. I did feel a bit of mourning over the loss of my... [ more ]
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J-Pouch ForumsGeneral Discussion
Partial Obstruction
F Fosty
Fosty Thanks so much for the info! Doc thinks pouch is narrowing and might have to go back to the Ostomy. Ugh ); [ more ]
MicheladelfinaTX I've had my pouch for 6 years and while I had a few obstructions I was hospitalized for right afterward, things were relatively quiet until recently. I was hospitalized four times in June with obstructions and once again last weekend, none of which should have been related to food, as I'm pretty careful with what I eat. From my understanding, flares can cause swelling that can cause a blockage, as can all the scar tissue that I have. As mentioned above, I keep a great heating pad and grape... [ more ]
ElmerFudd Fosty, I am 45 and have had my j-pouch for 8 years now. I think my pouch has only gotten better over the years rather than the other way around. Part of that is understanding things and what works for me. The addition of sulfasalazine and Prilosec has done wonders for my frequency and acidity, reducing the # of antibiotic rounds I take for pouch issues a lot. So to that question - I can see where things might regress, but that hasn't been my experience. Doesn't mean it couldn't / won't... [ more ]
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J-Pouch ForumsGeneral Discussion
Cholestyram?
C Chayes
Chayes Well, I tried the cholestyram (cholestramine) for the 1st time yesterday morning, while it didn't really taste bad it was awfully chalky. It made me very nay joys and sick at my stomach. I had to leave work early. I'm still dealing with a little discomfort today but did not take it again. I am going to wait a few weeks and try a 1/2 dose to see how that does. Does anyone have any suggestions on how to take to minimize side effects? [ more ]
Scott F Cholestyramine isn't a treatment for strictures, but I wouldn't expect it to make stricture symptoms any worse. [ more ]
GraceB I'm just wondering if you have strictures due to scar tissue would cholestermene I don't have correct spelling thicken things up to much where you can't go Thanks Grace [ more ]
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J-Pouch ForumsGeneral Discussion
how hard to fight?
GinLynGinLyn
GinLyn Hey, I chose to have a pouch advancement. Week 6 post-op tomorrow; it's been rough, but there is no sign of the fistula at all. This was an alternative to a muscle graft suggested by an outside surgeon. He specializes in these kind of surgeries, works with pouches A LOT (top guy in the NL, one of top guys in all of Western Europe), and has had success with this before in an almost exact situation. Not a typical solution, but I finally decided it was worth one last shot. Gin [ more ]
Batel GinLin, I just read your post and I feel as if you have simply taken all the words and descriptions out of my life and wrote them down; or I was cloned without my knowledge. If you can, please update on what you have decided. [ more ]
GinLyn Elaine: So glad to hear you've had a positive outcome! My surgeon has said right from the start that choosing an end ileo will give me my life back with no more problems, so it certainly is tempting. Understanding that nothing, of course, is guaranteed! Gin [ more ]
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J-Pouch ForumsHelp! Need advice now!
nighttime leakage
U UjohnjC
ljk Hi I had my jpouch surgery 1yr. agoand still experience leakage mostly at night. I am currently seaking physical therapy for this matter. What she recommends doing is sticking your index finger,candle stick,or a pencil these hings must be covered with some kind of barrier like a condom. I have only been brave enough to use my finger ( ya, I know gross!) and sqeeze as many times as possible. And last your kagels are very important. If this is not done our muscle gets weak and no longer works! [ more ]
MicheladelfinaTX I had some leakage with both my loop and end ileo's...from what I remember the doctor said a bit was normal. I kept a few of the rubber backed mats from the hospital and would sleep with them under me just in case so there wouldn't be a mess. [ more ]
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J-Pouch ForumsGeneral Discussion
dilation help
pouchingtonpouchington
GraceB thanks for answering I didn't know that. I will ask my surgeon That is why I love this site because a learn something new everyday Thanks Grace [ more ]
Scott F Plenty of people self-dilate, particularly to keep a medically performed dilation from closing up again. I think you really ought to be given instruction by someone who knows your specific anatomy. No one on this board knows exactly where your stricture is. [ more ]
GraceB I didn't know that you can self dilate. I am going to the hospital as an out patient for dilation. Don't you find that painful? Grace [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hernia repair What repair procedure is strongest
D daviwyat
skn69 I've had a few hernia repairs and to be honest the only ones that have held were the mesh repairs through laporoscopic surgery ( to be fair I have particularly fragile tissues and skin so I need the reinforcement). All well so far...seems to be holding just fine and I have also had other laporoscopic procedures since. Sharon [ more ]
Jan Dollar I had a mesh repair of an incisional hernia that was quite large. That was in 1996. I've raised two boys since then, with lots of heavy lifting and an active life. No recurrence of the hernia, and no unusual adhesion issues. I even had another surgery (laparoscopic) since then, and my mesh was not an issue. Jan [ more ]
Dog For what it's worth, I had a hernia repair about a year ago. From what I've heard, after you have had abdominal surgery, hernia's are most likely a fact of life. 1) Traditional surgery has less complications than laproscopic surgeries for treating hernia's (no robots!) 2) Mesh helps prevent another hernia, but might cause problems with adhesions. When my hernia was fixed, I went with the traditional surgery and the surgeon opted to not use mesh b/c the hernia was "small." So far no issues,... [ more ]
See all 3 replies...
J-Pouch ForumsK-Pouch Korner
Failed J-Pouch
G greeniris
Rich M I am joining your conversation since me too I am facing a Jpouch failure and I have some interogations about K-pouch. One of them concern the old pouch. Does the surgeon, has to remove it and close the anus or does he leave it in place but disconnected? If the old J-pouch is not removed, should I expecte some problems such as leakages by the anus, pouchitis, etc. Furthermore, I would to know more on the level of risks related to the surgery for making a K-pouch. On the risk aspect, how does... [ more ]
JaniceM I don't think so..depends on spincter muscles and much more for a JP. But, yes to a KP. I'd just let Dr Beiermester take over his care as planned and answer any questions. I had to wait at least 6 mos after my ileostomy to have it converted to a KP. And, my surgery went very smooth. He needs his health back right now! [ more ]
greeniris Thanks! So far we have been very pleased with Dr. Worsey and Dr. Beiermeister. Dr. Beiermeister has taken over my husband's care and has been great. My husband kept getting abscesses from the last surgery and he is still fighting that and still has a drain. Dr. B wants to wait a year before attempting another surgery. I am very curious how it will go. The 2 surgeries that my husband had with his old surgeon were both nightmares, but we are beginning to think it was the surgeon just being... [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Pouch re-construction
MahshelleyMahshelley
GraceB You are so right about that Good luck with your surgery Grace [ more ]
Pouch4Wf Mahshelly, I wish you the best with your new pouch. The statistics are very good on pouch-redos, especially when the the first pouch had mechanical/structural issues. My wife is going back to work tomorrow!! Dan [ more ]
Mahshelley So they ended up just taking my old pouch out and making a new one. They removed the mucosa of the rectal tissue and attached my newly made jpouch. Looks like my old one was really inflamed and thick from years of inflammation. I was in the hospital for 9 days and have been home a few. Have a temp iliostomy and plan on take down in 3 months. All in all it took them 11 1/2 hours to fix the dang thing but I feel great. Let's hope when I turn the jpouch back on after takedown it works like a charm. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Gas
SavannahSavannah
Pluot Just thinking about this more... have you tried Gas-X (simethicone)? It doesn't actually reduce the gas but it encourages the small pockets to consolidate into larger bubbles that are easier to pass. Maybe this would help?? [ more ]
Scott F I've not had the experience of gas directly preventing complete emptying. Gas can be much more bothersome for me, though, if things are inflamed (e.g. pouchitis or in your case perhaps irritation after your fistula repair). In any case, if the gas is a sign of SIBO then treating that might reduce it. I also use Beano, at least when I'm eating gassy foods. And make sure to tell them about the incomplete emptying when they do the rest of the fistula repair, so they can look for possible... [ more ]
Savannah Thanks Pluot. I was afraid a probiotic might be a trial and error thing. I am already following a low FODMAP diet as best as I am able. [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
drainage from wound after j-pouch removal
Sean NYSean NY
Caty Sean, Please don't rush your recovery period. You mentioned that you will be starting a new job today. After my surgery I had a recovery period of eight weeks, so please take it real easy on the new job. Your body is healing from the inside out, so you will probably experience leakage for several more weeks. Keep plenty of pads or gauze available and change frequently. Keep the area relatively clean but treat it very gently. You'll be fine; don't worry--patience. Caty [ more ]
See 1 reply...
J-Pouch ForumsK-Pouch Korner
Shen not a fan of BCIR
PouchomarxPouchomarx
vanessavy Shen is my on and off GI when needed. He isn't a fan of it because he pushes for the Kpouch at CC. I also don't think he gets it. It is a part of him and his superior attitude that drove me nuts. [ more ]
BrianL. Dr. Rehnke at Palms did my BCIR 2 1/2 years ago. It's the best decision I've ever made. Quality of life has increased a million percent and no issues with it so far. [ more ]
Pouchomarx Thanks Bill. With so much going on yesterday its hard for me to remember specifics. I do remember him saying that it takes up alot of small bowel and does not leave much behind in case you need some. sorry. I asked him if they made any new strides in formation of the kpouch and all he said was it was perfected. lol [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Biologic experiences?
Grieving Old pouchGrieving Old pouch
oonja About 6 months after my takedown I was still going around 30 times a day and had a lot of trouble with incontinence. We tried Humira as a last resort (I'd had an allergic reaction to Remicade before surgery). I made a huge difference and I'm glad I tried it. However I will say that while I went from being absolutely miserable and ready to cut the dang pouch out myself, to being much better, I still have needed to stay fairly close to home. And the last couple of months have been downhill. I... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
IBD clinic at University of Utah
O oonja
oonja Thanks for the info guys. I'll check out those names you both gave me. Glad to hear you both are doing well now- hope it works that way for me too! [ more ]
Mahshelley Just had my pouch redone at the university of utah by dr Merrill Dayton. He's awesome. He's a general surgeon with speciality in colo rectal. May be worth talking to him. I haven't dealt with any clinics at the U but he was awesome. [ more ]
RollinwithnocolonJH If you really want to travel...in Oceanside California is where I've found the best doctor to date. Mind you I've been dealing with GI's since I was 12 years old. Christopher Devereaux. He gave me my life back. He figured out what was really wrong with me and I am down to 2 medicines and that's it. I rarely get sick. I haven't had a flare in over a year. This guy is a bulldog and doesn't stop until he has the answers. [ more ]
See all 4 replies...
J-Pouch ForumsOstomy & Skin
Getting jpouch removed
ClickyClicky
Lambiepie Best of luck, Clicky! [ more ]
Holly HM I have given myself an enema every morning and every night for 20 years, but that is not working for me anymore. But if you have not tried it, you might want to give it a shot. [ more ]
BobS Clicky - I hope you read this before going to Canada. Not saying this will solve all problems, but have you considered just giving yourself an enema when you get up in the morning. I didn't have a leakage problem, mine was nothing would come out. Finely gave up one morning and tried an enema. Total success. Giving yourself a daily enema is not a medical issue. My routine, an enema of warm water in the morning when I get up assures me a carefree day and a good nights sleep. As for sore butt... [ more ]
See all 11 replies...
J-Pouch ForumsPouchitis
any shakes or meal replacement ideas that conform to sugar free,no starchy carbs..di
R Rebe0505
Rebe0505 hi all pretty sure any whey protein would be bad idea for me to use as i think whey is like my having starches..thus bad for me as i avoid all starches and sugar outside of fruit..so another protein to drinks is what i have to do..will look into others mentioned..would love to gain some good weight with drinks added to my three meals..want to contribute to weight from lean muscle not fat..i do train with weights three times a week but am just because of my issues a little to lean.. [ more ]
Rocket TE Marie, I use just cold water. I need to lose about 10 lbs and not doing a good job of it. The flavor is not very tasty. I use the Vanilla Plant Fusion. I do love chocolate though. I do drink Almond Milk, Vanailla Light, which has 60 Calories. I don't care for the Original Blend. I wish I could tolerate Bananas, but cannot. Every time I eat a banana, it feels like I swallowed a a bowling ball. Just very heavy. Peanut Butter? I have to look at my chart to see if I can tolerate that. That is... [ more ]
TE Marie Rocket, I use chocolate PlantFusion, unsweetened vanilla almond milk with ice in my vitamix and it tastes like a ice cream shake. (well pretty close) If you can eat bananas and peanut butter add them to the above and the shake is awesome. Almond Milk has twice the calcium as milk and maybe you can tolerate it. I haven't tried rice or soy milk. I like it as it only has 30 calories per cup! [ more ]
See all 11 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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