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J-Pouch ForumsHelp! Need advice now!
Understanding possible outcomes from mucousectomy - help!
L Ljz
winter wish I had it done by Prof Nicholls he and Park pioneered the pouch (Prof Tekkis assisted him), so he was possibly the world best! He gave me a 50/50 chance of success. I still have it 9 years later [ more ]
Ljz Thanks Jan! still deciding if my condition bad enough to take surgical risk of possible permanent ileo. Don't know if the prolapse will get worse so may just live with it - not great and does limit me from doing things but minimal pain until I've reached 30+ BMs day or eaten wrong foods. Know no surgery is without risk, but had really hoped to improve my QOL for a few more years. Never easy decisions, though like many the first pouch was a no brainer because of how miserable I was/ we were! [ more ]
Jan Dollar Well, one thing to keep in mind is the fact that your complication is rather rare, so there's not a ton of data out there. Your doctor cannot give you odds because there just not enough data to state the odds one way or the other. As it usually is in these complex cases, it is not known exactly what needs to be done until they are in there and see it. This is why the different scenarios are presented to you. Unsettling as they may be, it is far worse to be assured you have an 80% or whatever... [ more ]
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J-Pouch ForumsGeneral Discussion
Rifaximin - Antibiotic
K KOB
KOB @Mahshelly, Thanks for the heads-up. I have passed the info on to my GI and suggested that this may become our Plan C. If he hasn't heard of the antibiotic, it will give him some incentive to familiarise himself. [ more ]
Mahshelley I tried Rifaximin for chronic pouchitis, did nothing for me. The GI switched me to a non-traditional anti-biotic called Vancomycin and it works WONDERS. Better than cipro or flagyl. And it's not absorbed either. He has started using this for his chronic pouchitis patients and told me it works great. It comes in pill form and IV solution (but you can take shots of it orally). If cipro or flagyl aren't cutting it, this might be worth a try. [ more ]
KOB @Scott, Thanks for the reply. It looks like Cipro is the way to go. Assuming the price non-PBS here is workable, I don't know why I'm stuffing around with essentially untested or limited testing (for chronic pouchitis) rifaximin. Will ring pharmacy now and get a price. EDIT: Well did that, my local pharmacy has some sort of deal going with the supplier (about a third of the going rate) and they can do 56 Cipro tabs for $51.40 (comes in lots of 14), essentially 92c a tab (amazing, almost as... [ more ]
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J-Pouch ForumsGeneral Discussion
Any ideas what this is?
S sally85
Mahshelley Sally, I had a very similar experience about 2 years ago. I noticed a lump and extreme pain just like you described. Long story short - it was a fistula where the pouch and rectum connect. My MRI's and CAT Scans didn't show it. They ended up removing the lump and opening further issues. I would have them make sure it's not a fistula draining into a pocket. It presents very similarly to a cyst. I went through 8 months of issues trying to get people to figure out the problems until a surgeon... [ more ]
sally85 Lol! Very true I think the word normal is not so normal for us anymore! Good to know it takes longer than 7 days I felt a bit like giving up to be honest as my takedown was over 19 months ago now and I've had no relief! If it's okay I might pm you Jan about the hydrocortisone enema I have a few questions Thanks again Sally xxx [ more ]
Jan Dollar Normal? Who knows? Just kidding. But I think it is not atypical to have some backsliding on rectal treatment. Mr. Butt probably gets pretty annoyed with something being stuck int there all the time. I would not expect a huge improvement in just 7 days. Mesalamine takes more time and is good gor maintenance. I'd ask about hydrocortisone suppositories or enemas for more quick relief. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
32 Years
JP janice pollard
janice pollard Thank you Jan Dollar! Yes! I finally figured it out! Thank you for your patience with me.... Non techy to say the least! Lol�� [ more ]
Jan Dollar Nevermind, it looks like you have figured it all out! Jan [ more ]
Jan Dollar Janice, I am not sure you understand how posting replies work here. You do not need to create a new topic every time you want to reply to another post or thread. Replies should remain with the original topic. Otherwise, they will become meaningless as they become separated from the original post. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
New to site pending reversal in 3 1/2 weeks
GoofeegutzGoofeegutz
CTB23 Just went for my follow up visit with surgeon today. Everything looks good! Going back in a month to check on ip incision site, then 6 mos. later. At one year he wll scope a ,d biopsy due to a small area in rectal cuff that he needs to keep an eye on. He suggested Imodium before going out to eat, just to be safe and also carrying it when traveling. Also, I may increase trips to bathroom as I introduce new foods to my diet. Not too concerned. It is what it is! So far no complaints! [ more ]
Goofeegutz Thank you for the tips!!! Better increase my kegel exercises! Thanks willies that's is great to hear you Are already gaining weight. I hope I will also, mostly hoping my appetite imprives, cause right now I have very little appetite and I've always loved to eat!!! [ more ]
CTB23 I agree with Willies. I did tons of Kegels in between my 1st and second steps and then before takedown. And yes Depends have helped a lot. My takedown recovery has also not been difficult. Just need to work on weight gain, but that will come. [ more ]
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J-Pouch ForumsGeneral Discussion
Dr. Remzi: Pouch procedures and why pouches fail
WinterberryWinterberry
Mysticobra This was a very informative discussion. Not only about leaks. But also about who should and shouldn't be recommended for a pouch. He said if a person can live with an ileo it should be that way. I was one. I should have went straight to it instead of two years of misery. I know personally why he mentioned this because I went through it. A pouch is not for all. And people have to come to terms with it. I went the hard way. Very very important discussion. Hindsight. And damn. I can see why it... [ more ]
Linguist Thank you for the youtube link �� I always wondered if Dr. Remzi was Turkish because his last name sounds so...but I was too lazy to check it online. Now I am sure �� He has quite an unusual first name though. [ more ]
Jan Dollar Brewbirds, it is possible to develop a leak at any time. Howver, what is most likely is for the leak to occur at the time of surgery or during early weeks of initial healing. It may take years to develop into something diagnosable, because the leak is so tiny. But, in reality, it was always there. It was just not detectable. If you have unexplained symptoms that defy all imaging and other diagnostics, sometimes the culprit is an indolent leak/sinus tract that is only fully discovered by... [ more ]
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J-Pouch ForumsGeneral Discussion
Difference between laparoscopic and robotic assisted laparoscopic and my experience with Dr Shen
CalifornicationCalifornication
Pouchomarx Remzi redid my pouch and I had scope with Dr Shen a few months ago and he found a very mild distal pouch prolapse. It was not causing me any issues but noted it. Of course I freaked out but was told if not causing issues then not a concern. Dr Remzi also stated its a non issue so go live life.. I just wonder if these can get worse over time or stay as is? And can they be repaired without losing the pouch if needed? [ more ]
StarryNight I highly recommend Dr Ashburn simply based on my experience with her over the past 2 weeks. She was involved in my needle knife repair of my mucosal prolapse alongside Dr Shen. She took the time to review my entire history and was able to explain the procedure to repair my prolapse in terms I could understand. She carefully went over all potential problems which may arise during surgery and all possible outcomes. She carefully listened to all of my concerns and responded accordinally. I felt... [ more ]
Kara Fred Since the two top pouch surgeons left the Clinic, Dr. Ashburn has become the to go to surgeon (she does Kpouches & Jpouches). I have not have had any interaction with her, but I hear good things. If Bo Shen recommends her, she's probably very good. But it all comes down to your appointment & feeling. Best of luck. And your right Dr. Shen is one of the best GI's. My GI I had when I lived in Ohio recommended him - so he is a bit famous. Glad you saw him, he is a genius! [ more ]
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J-Pouch ForumsK-Pouch Korner
After KPouch revision, another issue
Kara FredKara Fred
LORI726 I totally agree with the above comments. Back in the day when my J pouch was working awesome, I had an ovary removed due to an ovarian cyst by a doctor who specialized in treating gynecological cancers. Thank God my cyst wasn't cancer, but he made a mess of my abdomen. He decided to do me a "favor" by removing existing scar tissue which just resulted in an intra-abdominal abscess, an intra-abdominal drain for 2 plus months, and possible damage to my J pouch. My colo-rectal surgeon was... [ more ]
skn69 Hi Kara, so sorry for the complications...you may need to have the midline scar opened up and exposed to heal outside-in or maybe start flushing it with betadine solution until it heals. My scars usually do the same sort of thing and those are the 2 go-to solutions Next, the cyst. I have a great general surgeon who does j pouches through laporoscopy and he is my only surgeon here. Does it all. Did my hernias, adhésions, galbladder and numerous pouch fixes...you do not have to use a k pouch... [ more ]
JLH Kara --i'm so sorry what has happened to you. Not fair at all. I don't have any experience with needing additional and major surgeries that were near the pouches, first the J, then the K. So my thoughts are not based on a similar experience. That said, I would opt for a local specialist in ovarian cyst surgery. Would also want my PCP to be included in the discussions, along with Dr. Dietz and the specialist. I'm glad you are transferring to university hospital and staying with Dr. Dietz. [ more ]
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J-Pouch ForumsPouchitis
How to stop chronic pouchitis
S slewis
AllyKat You can take up to 3000 mg daily. I take 1500 myself [ more ]
Scott F Also, it's important to distinguish between 1) getting no benefit at all from Cipro or Flagyl, and 2) getting benefit that only works while taking the antibiotic. If it's #2 he might need longer courses of antibiotics. I have to stay on them all the time, but I am quite well as a result. [ more ]
slewis I'm waiting for call back from MD so I will ask about that. Thanks for suggestion! [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch Obstructing BM, Enlarged Small Bowel... Cleveland Clinic GI
EG-BethEG-Beth
twinkie ❤️
JenJen I saw your post on another topic and again on this one about your impending trip to Cleveland. It sounds like you've had a rough road and I can certainly empathize with a lot of it. I am 47 and have had a 15 year nightmare with IBD/RA. I was diagnosed and treated the first several years in San Diego and then moved to the suburbs north of Detroit. I got significantly worse in 2010 when I had an emergency total colectomy and then followed with the j pouch in 2011. The pouch never functioned... [ more ]
EG-Beth Thank you for all the replies, I will answer more in a moment. I Just found out that I will be going to the Cleveland Clinic on Sep 7th. I was wondering if anyone knows of a cheap place to stay as the on campus wants $170 with discount. thanks [ more ]
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J-Pouch ForumsGeneral Discussion
who does your scopes
S shawanna24
AllyKat My GI has for the past 17 years [ more ]
Jan Dollar My local GI. Always have. Especially OK if you do not have unusual problems that need Dr. Shen's expertise. My GI is a liver specialist, but I like him a lot and he is open to new ideas. Plus, he reads the journals to keep up. He is in my group and all my medical records are available to him. You do not want a GI who thinks your pouch is the same as a rectum! That said, if my surgery was at Cleveland and Dr. Shen was my doctor, I certainly would not change unless he was not where I lived. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Newbie; What's your best advice for caring for your j-pouch?
K kkmnocolonstillrollin
nmill28 Thanks CTB23 for the reply. I'm glad things are going well for you! [ more ]
CTB23 Actually, I am doing well. I am typically having 5 trips to the bathroom a day, 3 during the day and 2 at night, although I went from 9:00 p.m. to 6:00 a.m. today. I have been out several times since my second week home, especially for breakfast, shopping etc, and taking at least a 20 min. walk after dinner. I am only on Pepto right now, and sometimes forget to take that. There doesn't seem to be anything special I can recall doing. I do follow the low residue diet pretty closely and drink... [ more ]
nmill28 CTB23, I had my takedown on Aug 1 and was wondering how you are progressing? I'm still have Several bowel movements (10-15 times a day even with taking an Imodium before every meal) and I feel like I have to hold it every 5 minutes most of the day. Butt burn is an everyday thing and I've been taking everything out there to try and control the gas ( I have been taking 3 beano before every meal along with the Imodium). Then at night I typically have to go around 3 to 4 times a night do to and... [ more ]
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J-Pouch ForumsGeneral Discussion
Leg Cramps and Salt
NS Nora S.
skn69 Tomatoes, potatoes (steamed or boiled ), pickles or olives in brine (sip the juice too), sweat and sour everything (salt and vinager chips...) all help...binding agents are baked potatoes with tomato sauce that put pay to your cramps...baths with sea salt, muscle massages... They all help to a certain degree, just mix and match to taste. Sharon [ more ]
PATRIZIA 1 banana per day keeps my cramps away! I really find out that on periods when I eat less regularly bananas I suffer cramps again. [ more ]
Nora S. Thanks Jan. Yep, the surgeon said "salt your salt!" [ more ]
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J-Pouch ForumsGeneral Discussion
Nutrition
DB Dr. B
skn69 Where are you going? What continent? It all depends on that and your specific needs. .personally I do grilled fish and salad everywhere I go, yogurt for breakfat and snacks, fresh juices for in between and fruit whenever (bananas, papaya, mango. .) A hand held blender has been a godsend. You can also email hotel restaurants with special requests ahead of time. Sharon Ps. A decent potato bakes in the microwave for 6-7 minutes...fill with yogurt, tomato sauce and tofu or any other yummy... [ more ]
Dr. B Excellent ideas, thank you. Most of the hotels have a microwave and fridge. I will do my research, thanks again. [ more ]
Winterberry Hello, Dr. B. You don't mention the type of hotel you stay in, whether they have the mini fridge or a small kitchenette with microwave, or if your job takes you to hotels in the central area of a city near convenience stores, grocery, or health food stores, but here are two ways you might eat healthy on the road. On arrival I would head to a health food store to stock up on items made that day, ready-made items such as boxed cold noodle salads with vegetables, wraps, or vegetarian or vegan... [ more ]
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J-Pouch ForumsGeneral Discussion
Gallbladder problems anyone?
Sherri FriendSherri Friend
skn69 I had problems in my teens pre pouch but not pre-disease...I was running at both ends and doubled over in pain from the galblader that felt like a knife in the back under the right shoulder and a kick in the liver. I had it removed when it threatened rupture at 1kg with a litre of fluid in it (1 pint). Managed to have it done laproscpically and the surgeon was floored... I felt better within days and only suffer when I overdo it with fats or meats. I get a knife in the gut where it used to... [ more ]
Former Member Yes, gallbladder problems are common for most j pouch patients. I had mine removed years ago. The surgery wasn't bad. And I don't miss my gallbladder now unlike my colon. [ more ]
Jeffsmom Oh yes! My son jeffrey had his gallbladder out along with his 2nd takedown in January. And aling with a liver biopsy! [ more ]
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J-Pouch ForumsGeneral Discussion
Cleveland Clinic Surgery
J Joanm
EG-Beth Thank you all for so much help! I tried talking with the Cleveland Clinic's Concierage Services but they where not helpful like the Mayo Clinics had been, which was vary disappointing. I had hoped they helped with flights, finding afford able hotel, and answering questions. Instead they just gave me hotel phone numbers to try. All wanted money upfront and if I only had to stay 2 weeks and not 3, i couldn't shorten my stay and get any money back. Most Hotels want a lot for no hot breakfast,... [ more ]
JLH BB good idea. Try Airbnb too. Jh [ more ]
Winterberry Hello, Beth. Have you googled Bed and Breakfast places? [ more ]
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J-Pouch ForumsGeneral Discussion
Life Insurance
R Rags
Kara Fred Glad to see this post- I've also tried to get life insurance and denied because of UC. I work for the government & will purchase more through them. Thanks to all the guidance. [ more ]
Jan Dollar Well, after you retire your insurance needs go down. That's why we stopped term life and disability after retirement. It was mostly to replace income stream while working. If you don't think you'll have your mortgage paid off by retirement, you can look into mortgage life insurance, so that anyone left behind is not forced to sell the family home. Another angle is to just put that money to work for you in a 401(k) or IRA. No medical exam required! We also put money away in our HSA account... [ more ]
Rags Thanks Jan. I have incredible insurance now through work, but once I retire and leave, it goes with it. I'm looking into organizations now and we'll see how that goes. If anyone has had a positive experience with this, please chime in. Thanks. [ more ]
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J-Pouch ForumsHelp! Need advice now!
UC - J pouch surgery done in 1996 and now joint pain
H Holtons6
Brewbirds I developed arthritis about 5 years after JPouch surgery.(@25 yrs old) I literally woke up one more with an extremely swollen finger, took three doctors to understand what was going on. All blood work looked fine. It then 'spread' to other joints(knees, elbows) as years past. I had to eventually go on Enbrel. But it's very controlled. A RA doctor is definitely the next step. Good luck! [ more ]
Jan Dollar You may want to stop the meloxicam a couple of weeks before your rheumy appointment so that your symptoms are more recognizable. My rheumy measured the amount of separation in my low back when I bent over as far as I could. This measurement may not be accurate if you are on anti-inflammatories, and it could delay diagnosis. Jan [ more ]
Holtons6 Thanks for the information.I have had x-rays and no injury just mild tricartmemal joint degeneration. The one marker in the blood work that showed high shows that there is inflammation from what I have been researching. I am feeling better with the meloxicam and going back to working out and hope that will help also. Thanks again for your comments. [ more ]
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J-Pouch ForumsGeneral Discussion
Tinidazole and Humira
C canlafre
Clarice Thank you! [ more ]
Jan Dollar I have been on one biologic or another for over a decade. No big issues. But, if I get sick, it can quickly go sideways, so I am mindful of that. Right now I am recovering from what I think is norovirus (made worse by altitude sickness). Two others in my family got sick, but it took them 24 hours longer to have symptoms, and mine were much more severe. My main problem with Humira was injection site pain, mostly a terrible sting, during injection. I did find that the stinging was much less... [ more ]
Clarice Thank you guys. I'm really not keen on the risks but don't want to lose more gut. Initially diagnosed with UC in 97, had my pouch surgery and have been treated surgically ever since, mainly for adhesions. I now have some ulceration and inflammation but the biopsies have not been definitive, so Crohns not even definite, although my team (who are usually great) want to go forward with treatment for such, to avoid a resection (and more adhesions). Feels like a difficult decision for me to make ☹️ [ more ]
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J-Pouch ForumsPouchitis
Lactoferrin as a supplement...
D danno_au
Jan Dollar Interesting news! Glad to hear it is working for you. Keep reporting back. We need all the ideas we can get. Jan [ more ]
danno_au Hi Linguist, Thought I'd check in after a few months of *crickets* and lo and behold, someone noticed . Yes I'm still taking the lactoferrin, but have incorporated it into my antibiotic rotation. Not because the lactoferrin stopped working (it still works great), but just a means to "hedge my bets" as I don't want to discover down the track that it either a) Loses effect due to resistance or b) Has some other negative long-term effect that we don't yet know about due to lack of studies. So... [ more ]
Scott F Alan, there is no evidence that I'm aware of that antioibiotics cause pouchitis. They can have all sorts of side effects, they're not very good for a robust microbiome, and they shouldn't be taken unnecessarily, but they aren't responsible for everything your imagination suggests. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Yellow excess stools
CredCred
Jan Dollar Yes, I'd call my doc for a course of Flagyl or Cipro. Sounds exactly like pouchitis to me. If your GI is far away, he can place an order based on symptoms. If it does not work, you need to be see in person. How long since your last scope? My GI does not scope me every time I have symptoms, but I get scoped every 12-18 months. Jan [ more ]
Cred I have never had pouchitis that I know was that! [ more ]
Scott F This could be pouchitis, which is (usually) easily treated with a course of antibiotics. Have you had pouchitis before? [ more ]
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J-Pouch ForumsGeneral Discussion
Chronic itch
DaffodillyDaffodilly
Former Member I've never used Vaseline; it's normally recommended to apply Vaseline on top of the ilex to prevent butt cheeks sticking together, but this tends to only occur when ilex is spread heavily and thickly over a large area between the cheeks. I've never needed to apply ilex between the cheeks to such an extent, although when I first started using ilex to treat what I believed was butt burn, I did apply it heavily and thickly; kind of smearing it on top of what I believed was the affected area. [ more ]
Jan Dollar Also, if you get irritation from baby oil, you may also get irritation from most wipes. You might try plain mineral oil (with no fragrance). I don't think you need to remove the Ilex with each BM, that is disrupting the healing area too much. Just reapply the vaseline. Try to leave an application of Ilex on as long as you can, maybe cleanse off once a day while showering. Jan [ more ]
Former Member No, but kinda yes. It all depends on the severity of the butt burn and skin damage. If ilex is applied for the treatment of anal itching or a burning sensation, only a small pea size amount is required, applied sparringly over a large area, to ease and soothe. It's not practical to cleanse with toilet paper, as the paper kind of drags n tears (due to the ilex). Using the wet wipes, the moisture of the wet wipes aids the cleansing process and removes all traces of ilex, although there maybe a... [ more ]
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J-Pouch ForumsGeneral Discussion
Joined the club - doing well?
BobishBobish
Winterberry Hello, Bobish. Your pain will go away soon. I had pain and walked hunched over for many weeks, also had difficulty catching my breath. it felt like a too-short steel rod had been tightened in my incision and could not straighten. Your tissues and muscles were cut and now they are trying to heal and knit together again. Everything is tight and stiff. But the incision and scar tissue underneath will soften and heal. I had weakness and pain in my lower back and could not even bend over the sink... [ more ]
Linguist I had to hunch over for three to four weeks after the surgery, but the last one or two weeks I was just afraid that something bad would happen in the surgery site if I stretched my belly. Finally, I gave it up because my family and friends began to say I was exaggerating it and there was nothing to worry about [ more ]
ElSur 1. When I still had my stoma (I have a pouch right now) I can remember that the stool varied quite a lot. Some foods made it nearly water-like, some foods helped to keep it firm. But in the beginning everything was more or less water-like. I can't name any time frame but I'd suggest you give that some more time. Furthermore it's already working with Loperamide, so that's good 2. I know that pain. The only time I had it constantly was when I had a double-ended stoma. So I was in hospital, I... [ more ]
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J-Pouch ForumsGeneral Discussion
how to heal excoriated anus - acid erosion!!
fqfq
woodstock69 The bidet can make things much worse. I stopped suing mine and did much better. I have a portable that attaches to the commode from lowes, not needed anymore. [ more ]
woodstock69 After suffering for months I found the best web site, great information on many topics I bought the comfort shield barrier cream wipes on line, they are wonderful! I used corn starch at bed time, woke up almost healed. I can cut the cloths in 6 pieces they are so big, they are very expensive and not flushable but worth it. I tried every ointment, calmoseptine was by far the worst, baby aquafor the best. I have 20 types, I also have cholsetramine ointment and oral, that was not worth the cost... [ more ]
kta I occasionally get very painful and Questran works wonders for me. I separate it from my meds by 2 hours or more. When things get real bad, I'll get up in the middle of the night and take it too. For me, it brings amazing relief because the acid is no longer ripping me to pieces. That, combined with hydrocodone helps me cope. If I don't have these things, I try to avoid emptying my pouch and we all know what a joke that is. Once it was so bad I tried to quit going to the loo by not eating. [ more ]
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J-Pouch ForumsK-Pouch Korner
Safe Abdominal Exercises after K-Pouch?
M mh
mh Thanks SKN69, I appreciate the thorough suggestions. Most helpful to hear from a fellow experiencer. Did I make up that word? he he [ more ]
skn69 Bhi MH When you say that you are healed what does that mean? 6 weeks or 6 months? I like to divide the healing process (and the re-education of your abs and body) into 3 stages: 3 months, 6 months and 1 year. For the 1st 3 months I have learned to do nothing strenuous other than walking...light housework and very easy yoga breathing. From 3 to 6 months I start working on the pilâtes ball and the yoga mats doing mostly isometric work of breathing, tightening and holding for 5-10 seconds at a... [ more ]
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J-Pouch ForumsGeneral Discussion
Terrible appointment at Cleveland with Dr. Lavery
Olive OilOlive Oil
LHetti I'm so sorry for your story today. How awful! I'm sorry for all this cost you today! My GI told me I had to have my pouch out (because my cuff was a mess due to Crohn's) and my whole pelvis was a "hornet's nest". I begged the surgeon is just divert me and give my body another chance, but he refused to divert saying I would only be back in a short time to instead get the excision and barbie butt my GI was advising. My GI was adamant that do this immediately, but my surgeon said I could... [ more ]
skn69 I am so sorry for rpeo you have just gone through...it is inadmissible but unfortunately so common. I feel you pain and anger and humiliation...but you did good...saying what you did and reclaiming your dignity showed them for the insensitive bores that they are...better they work in the morgue than on living patients. Find someone new in a god hospital with human beings and not gut-gods. Sharon [ more ]
Kara Fred I am so, so terribly sorry you had such an awful visit at The Clinic with Dr. Lavery. It is so disheartening to know an established facility, #2 in Digestive Diseases, has left this impression. This is especially true for being an out of town patient (which is huge patient base for The Clinic). I am sure that visit has left you right where you started, unsure of where to go from here. It is odd why an expert surgeon would be so ambiguous. At least you still have the Mayo Clinic, which is #1... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouch/anal training... How???
mamaswansmamaswans
Former Member ❤️
Former Member Thanks for the explanation Scott. [ more ]
Scott F Metamucil thickens and bulks up the stool. Loperamide slows the gut. Some people will find that either will get them a comfortable result, but many will get a better result if they think about how these work. I take a bowel slower at bedtime, for example, when I mostly want to slow things down for a good night's sleep. [ more ]
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J-Pouch ForumsGeneral Discussion
Stomach repair after multiple stomas.
RE5RE5
skn69 I had about 2 dzn ab surgeries and at least 4 stomas and 9 scars in total (think subway map ) so I finally broke down and had it partially fixed . It took 3 surgeries, some liposuction on the lumpy spots and a reduction of 3 scars into 1 but I finally got an abdomen that doesn't make me want to cry. Not perfect by any means but worth it. Sharon [ more ]
Jeffsmom My son has had multiple stomas but they both wete from the same incession. I think the only thing you can do is a timmy tuck or have the incrssion renoved. See a plastic surgeon. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch removal advice preparing for op
TorresTorres
Olive Oil Torres, I'm with you. I've had my J-pouch for 19 years and now ready for a permanent ostomy. I was later diagnosed as having Crohn's. I hope you get more answers from a surgeron...I went to Cleveland and couldn't get the surgeon to answer my questions. [ more ]
BillV Ljz, if your surgeon does the k pouch operation, that would be an alternative to an ileostomy. Hopefully, the mucosectomy will be successful and will give you the quality of life you desire. [ more ]
Ljz I am preparing for a mucosectomy due to prolapsing of pouch lining and a flap that developed. Surgeon hopes to do it transanally but may decide I need ileo, temporarily. He laid out so many possible outcomes yesterday that I'm overwhelmed. From simple mucosectomy to ileo to opening me up To complete mucousectomy, to redoing pouch to possibility of permanent ostomy. I know he wants me to realize all risks but has anyone else had these all laid out in front when planning a mucousectomy ? [ more ]
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J-Pouch ForumsPouchitis
Remicade treatment
MsshoeMsshoe
Msshoe Thanks for your input. I just completed my 3rd Remicade infusion. I think it is beginning to help. I will check in with my GI doc for a checkup as I get my infusion in an oncology infusion center. My main problem is my poor veins so last week I had a port put in so I could take my 3rd infusion without being stabbed multiple times to get a working vein. Have fun at your reunion and continued success with your thyroid cancer treatment. You have a lot going on. [ more ]
CTBarrister I am actually writing this from the Remicade room at my GI's office in New Haven and I am getting infused as I write this. This is my 6th infusion and 3rd at the increased dosage of 900 mg. I seemed to be doing much better coming into this infusion than my last one when I was shaky the last 2 weeks prior to the infusion. In the last 2 weeks, I was much more stable than I was in the 2 weeks prior to my last infusion June 30. I had my blood labs done on August 18 and the liver chemistries are... [ more ]
Brewbirds Thanks everyone! Confirmed with my doc and have eliminated it from the rotation. She did not suggest trying tinidizole because of my reaction to flagyl. For now, rotating between xifaxin and Levaquin. [ more ]
See all 15 replies...
J-Pouch ForumsHelp! Need advice now!
"BB" or "Apocalyptic Bum"
DarkwatersDarkwaters
Brooksy I have a small anal fissure that I deal with every couple of months...not really sure if that's what you're dealing with though. What I found helps clear it up (in a few days) is after every BM I soak a face cloth in hot water in the sink. When I'm done I wipe and then hold the warm face cloth on my bottom for a couple of minutes. I do that a few times. It helps get some blood flowing down there and relieves the discomfort and helps healing. [ more ]
Former Member Darkwaters........ Just after my takedown, I experienced similar experience as yourself, absolute agony, although there was no soreness to the skin between the cheeks. I got instant relief by applying a small pea size amount of ilex Protectant Paste to the tip of my finger and appying it slightly to the inside of the anus. I discovered some weeks later, that during takedown Surgery, what remains of my anal canal or where it once was, required dilation; I believe the dilation created anal... [ more ]
Winterberry Hello, Darkwaters. Have you seen your doctor to check for fissures? Fissures can make you feel like you have pieces of sharp glass rolling around inside, or razor blades coming out when you have a BM. And in between BMs there can be itching, spasms, and terrible burning. Sometimes with fissures you can see cut lines or cracks around the outside of the anus. If it is a fissure(s), do not strain or push as this will make it really worse. After rinsing the area every time with a bidet or squirt... [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Pouch Removal
D desisn00ps
Dunninator Adam, I took it to bring my UC under control before I was considering surgery. It worked for me with no side effects, But Only for8 months. Decided surgery was the best option at that point. [ more ]
Adam Foster hi all, I am 46 and I have had pouch for 23 yrs (acute UC) - previously odd bout of pouchitis which would respond to antibiotics. However last 3yrs the pouchitis has become refractory and I have had fistula related abcess surgery and multiple dilations of mid pouch stricture. I am now intolerant of the antibiotics that work cipro/clarythromicin and steroids have not worked - all the drugs I have taken make me feel pretty awful. I am functioning , and compared to some stories I have read on... [ more ]
GinLyn Looks like I'll be going down the same road sooner rather than later; hoping for a good surgery and recovery time, although I know it is a major surgery. At this point, I just want to be done. I am sad to lose my pouch, but the stupid fistulas have proved too much. Gin [ more ]
See all 25 replies...
J-Pouch ForumsWomen's Health & Pregnancy
being healthy and getting pregnant
C CandiceT
CandiceT I'm sorry to hear! I hope it all gets better! [ more ]
chantalword I still have a small portion of my rectum that my jpouch is connected to. At the same time my doctors often say I have crohns like symptoms. Whatever it is, a jpouch isn't a cure, so I still say I have ulcerative colitis. [ more ]
CandiceT thank you! How do you have a jpouch and ulcerative colitis if I may ask? [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Need Doctor recommendations for Mayo or CC
Olive OilOlive Oil
BillV I agree with Cara about Cleveland Clinic and Mayo Clinic being top facilities for digestive disorders. I believe that Mayo only does the j pouch and Cleveland Clinic does j pouch and k pouch. There is not a BCIR Institute per se in the USA, but two surgeons currently do the BCIR procedure. They are Dr. Ernest Rehnke who practices at the Palms of Pasadena Hospital in St. Petersburg, FL and Dr. Don Schiller at the Olympia Medical Center in Los Angeles. Both of these surgeons are highly... [ more ]
Kara Fred I think I mentioned this in a previous post, but Cleveland Clinic still has Dr. Jean Ashburn, who has taken over as 'top' doctor for Dr. Remzi and Dr. Dietz. She is very good I hear, Dr. Lavery is a long-timer and also Dr. Delaney, the new chairman. I am not familiar with any others, but I am sure you can find someone. I actually am following Dr. Dietz to his new location at University Hospitals (which is hard to do) because I truly think the Cleveland Clinic, Mayo Clinic and BCIR Institute... [ more ]
Ljz Sorry you've had difficult time! I had heard that Dr. Remzi left and Dr. Dietz has moved to Case Western, also in Cleveland. There have to be other well trained, well respected surgeons at CC who specialize in pouch removals, redos and repairs. Does anyone else have recommendations there? thanks! [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Removing pouch cause short bowel syndrome?
Olive OilOlive Oil
chiromancer I was somewhat concerned about this because during pouch formation, due to complications, I lost much more than the usual amount of small bowel. I wanted to maintain the max amount of intestine, as we all should. I had UC but this would be even more important with Crohns. When I asked the surgeon how he was going to do the disconnect /removal I would have lost more bowel, not just the pouch. Don't assume they will just disconnect the bowel at the pouch and stick the disconnected end through... [ more ]
BillV I had my j pouch removed and a BCIR constructed. Although a short segment of intestine was used to construct the new pouch, I have no signs of short bowel syndrome and now I watch my food intake to maintain a stable and healthy weight. A significant percentage of people who opt for a BCIR or k pouch have converted from a failed j pouch and have had very positive results. I would suggest that you get a second opinion on your condition. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Nighttime Incontinence
ChrisSChrisS
ChrisS Thank you, Scott. I cannot thank you enough for your great suggestions. You have an impressive amount of knowledge that all of us benefit from. Thank you! Chris [ more ]
Scott F I find Lomotil works better for me than Imodium, so an Rx for that might be worth a try. Some folks get great results from a small, fatty "meal" at bedtime (like a spoonful of peanut butter). If you take a sleeping aid I'd suggest stopping. A month or two of aggressive daily kegels might increase your resting sphincter tone a bit. Finally, perhaps the antibiotic you used didn't do the trick, and a different one might work better. So you have a few things that may be worth trying. Good luck! [ more ]
ChrisS Thank you for the info, Scott. I am currently being treated for pouchitis because the incontinence has gotten worse recently, but even after a round of antibiotics, I still have 1-2 episodes of nighttime incontinence. I'm fine during the day. I do take 2 -4 Immodium before bedtime and I also take VSL#3 twice a day. Since my surgery over a year ago, I've only had a handful of "dry" nights. I'm getting ready to go to Cancun in December and I would really like to get this all figured out before... [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Vitamins and POUCHITIS
Chad44Chad44
Winterberry Check the ingredients' label. The capsules -- the actual capsule itself -- could be made from ingredients you may be allergic to. Some vitamins have fillers or things listed under "non medicinal ingredients" and these things might be causing your problems. Some might even contain sugars or fillers. Check the labels on all your vitamins. [ more ]
Linguist Hi CHAD44, Do the supplements you take contain iron? Iron may not cause chronic pouchitis but it gives me a lot of trouble if I take it orally. I experience symtoms similar to pouchitis such as frequent bms, unbearable abdominal pain and cramps that do not resolve with Tylenol and / or Buscopan (an antispasmotic). The symptoms disappear only after the iron completely leaves my digestive system. However, my butt and pouch remain sore and irritated for a couple of days more. [ more ]
Scott F Vitamins don't cause pouchitis. Have you tried antioibiotics yet? [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Hole next to hemorrhoids? ?
S sally85
duck11 I had a similar thing 8 years ago. I had a large swollen lump down there with a little hole that drained. It took forever to get diagnosed because it was dismissed as a hemorrhoid. I started feeling mildly ill all the time but was told it was just "stress" from grad school. Eventually it got REALLY big quite quickly and I could barely walk, and finally it was discovered it was actually a peri-anal abscess. I had the thing for 7 months before this was found. Has it drained and opened in a day... [ more ]
sally85 Thanks Jan that makes sense now that I think about it because there was bleeding on a pad before I saw this hole/cut there but the hemorrhoid is still a hugeand it just doesn't want to leave me alone, really hoping gastrointestinal doc can give me a solution to all this on Tuesday! [ more ]
Jan Dollar Your further description of the location and draining blood makes me think it is where a thrombosed hemorrhoid ruptured and drained. Jan [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Plan to work in call center need help
SW Sharon W
Dunninator I too am 9 weeks post take down. I'm not as frequent as you, but am worried about returning to work. I'm a teacher so I don't have the luxury of going when I can, however I was working setting up my classroom today and I hardly needed to go. I think because I was not thinking about it, but focused on another task. Hopefully you will have a similar experience. Good luck with the new job. [ more ]
BillV Sharon, it can take an extended time for your body to adapt to its new plumbing and for things to slow down. I had a j pouch for the 27 years that I was a manager for a large public utility and I often had to visit customers’ homes and businesses to deal with complaints and investigate potential damage claims against the utility. These visits often took several hours and I could not count on a restroom being available.. It often seemed that when I could not use a restroom, I could hold out... [ more ]
Scott F Sharon- What half-wit refused to let you use Lomotil? Were you given an explanation? In any case, over the counter Imodium works very similarly. Don't you get an hourly break? In any case, keep stretching the time between bathroom trips, if you can. You're still early in the process. Good luck! [ more ]
See all 4 replies...
J-Pouch ForumsOstomy & Skin
Seatbelts
R Rachel88
TE Marie Our cat died a few weeks before my surgery in March. He was only 9 and was the best pet I have ever had. He was a large breed, Maincoon, and weighed 25 lbs. Since I've been home all the time the last 6 years he followed me from room to room and I had to train him not to walk on my stomach. I really miss him and agree with you Lambiepie. He knew when things were worse. When I was a kid we had 2 - 4 dogs and a cat so I am a dog lover too. Richard, I eat blueberries everyday in my protein... [ more ]
Lambiepie No grandkids here yet! My dog Lola sleeps on our bed with us, but at the bottom of the bed. However, the sicker I got with my UC, the closer she slept to me. I used her as a barometer if I was trying to tough things out, to keep going when I should've gotten medical help. She slept right near my head one night. I woke the next morning to get ready for work and almost passed out. She knew I was bad. All those times in bed, in pain, she stayed super close. She was such a comfort to me. [ more ]
Mysticobra Yes. They don't complain too much. Except at feeding time. One knows and the other two start complaining cause I'm not getting up to feed em! I have had dogs all my life. My wife too. Our house would be empty without them. They were there for me through all my stages. No matter how bad I felt the Mini Aussie knew something wasn't right. She is so sensitive. But I always had a hard out to pet her. They help us in a different way that I cannot explain. Richard. P. S. Grandkids are pretty good too! [ more ]
See all 13 replies...
J-Pouch ForumsHelp! Need advice now!
spinal abcess
M Mr_pomade88
Mr_pomade88 So I got the contrast done and they didn't see any leaks. I went to get a second opinion and they did their own mri on me. Now I'm just waiting for their call for results and their next step. [ more ]
Jan Dollar This is not all that unusual. I had a presacral abscess and it was drained by an interventional radiologist, through the butt cheek, and that was over 20 years ago. The drain was left in place for about a month. No need for neurosurgery. Yours is a little higher, but in the same general area. There are a lot of layers between your pouch and the actual spinal column. I would get a second opinion from a different GI surgeon or interventional radiologist. You are entitled to one with even HMOs. Jan [ more ]
Mr_pomade88 Thanks for the reply billy. I didn't even know those two other procedures existed and I definitely will post updates. [ more ]
See all 8 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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