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J-Pouch ForumsGeneral Discussion
Butt Burn - Looking to give Ilex a go
Anthony GambleAnthony Gamble
Ljz Like Strange said, you'd think I was on commission for Ilex paste. Use it externally every night, even though not having butt burn. Preventative! During day don't use though will if going out for awhile. Have used a little internally when had cuffitis but not frequently.. Soft, high quality toilet paper a must! Metamucil type product not only firms stool but reduces acid. Have also used sqirt bottle with hot water during rough times. But the butt burn, thanks to Ilex, is the one thing I have... [ more ]
KOB Look worth considering: I was in a similar position to the point where a baby wipe touching my backside was excruciating. I actually self-diagnosed pouchitis and the GP I went to agreed. Put me on Flagyl and the problem resolved within hour, yes hours - nothing short of a miracle. So does everybody with butt burn have pouchitis, no of course not. Do some with butt burn have pouchitis, yes and there is plenty of evidence. So I take metamucil smooth twice daily. My stools art generally (for... [ more ]
nmill28 Anthony, thanks for the info and encouragement. I think I will give it a try. [ more ]
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J-Pouch ForumsGeneral Discussion
Surgery for Cuffitis
N Nomoremeds
TE Marie Hi Zoe, Since my post above I ultimately had to have my j-pouch removed. My cuffitis never really went away. My local GI sent me to the Mayo Clinic when conventional treatment for my cuffitis wasn't working. If I were you I would ask for a referral to another surgeon. I don't know where you live but the Mayo Clinic in is MN and Cleveland clinic is in Cleveland, OH. Each also have hospitals in Florida and Arizona. I'm not saying these are the only places to go but IMO you need to get in to... [ more ]
Clark_00 Oi! I can relate After about 4 months post take down I was experiencing so much pain I went to the hospital. I've unfortunately been in pain meds since June and I hate it. In July I had a mucosal stripping which they ended up only doing a section of and were able to pull some Mucosa from my pouch down on the other section. After a month I wasn't feeling any better but my surgeon thinks I need more time. im having a hard time lately discerning between butt burn and pain from hemmoroids and... [ more ]
*Zoe** Hello Nomoremeds, I understand that this is an old post but I am hoping you will receive this i hope you don't mind that I am contacting you but I saw in a previous post that you had pouch advancement surgery for cuffitis. I only had my takedown 8 weeks ago and have had so many problems including a pouch leak, abbcess and cuffitis. My surgeon wants to redo the pouch in three stages as you did. i am so nervous and just hoped you could give me any info on this and if it was worth all the pain... [ 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 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 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 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 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 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 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 ]
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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 ]
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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 ]
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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 ]
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J-Pouch ForumsGeneral Discussion
3 perianal Abcesses in 3 months it's literally becoming a pain in the ass... Why ?
S SonnyJ215
Jan Dollar Unfortunately, sometimes perianal and perirectal abscesses just tend to recur, once they are there. It has something to do with the type of tissue there and proximty to the fecal reservoir. Sometimes it is an indication of Crohn's disease. The key is proper drainage with a wide enough opening to prevent premature healing over before it is completely healed inside. A drain or seton may be necessary. In the meantime, lots of sitz baths. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2780182/ Jan [ more ]
SonnyJ215 Thank you Scott I appreciate the congrats on my granddaughter.... I guess your right something needs to be repaired just like Dunninator said as well .... I was fortunate enough just an hour ago I did a sit batz and it burst in its own what a relief! For now at least I'm calling my colorectal surgeon tomorrow I hope to get rescheduled soon and as away so appreciate everyone's advice on here ... Thx [ more ]
Dunninator I had a perianal abscess that I had the surgeon drain. A month later it was back. If it is a fistula, which mine was, ithe abscess will continue coming back until the fistula is repaired. [ more ]
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J-Pouch ForumsGeneral Discussion
Ulceration in the cuff, and what are the little dots? Picture attached.
dgtracydgtracy
Jan Dollar I have good insurance with a low copay (for now), but the monthly cost before benefit for most biologics in my area (California) is $2000-$6000. I guess this is one of the reasons that there is a large movement to work better prescription price deals for Americans. What is weird is the fact that I have been on Remicade for about 3 months now and have yet to recieve a bill for those infusions. I knew there was no copay for the infusion itself, but I thought I'd be billed for the medication. Jan [ more ]
Linguist Wow! Seeing that you guys have to pay that much money for medicine in the US, I consider myself blessed. My state insurance covers all biologics here, no deductible or co-pay needed. And even if I had to pay the full price for, let's say Humira, a box of two doses (two syringes or pens) would not cost me more than $350. Lucky me [ more ]
Jan Dollar Enbrel is not effective for IBD, that is why it is not approved for it. There are other biologics that are effective for both IBD and arthritis besides Remicade and Humira. There is also Simponi and Cimzia. Cimzia has an assistance program that pays for your deductible and copay up to $11,000 a year which did not require a financial need statement. That was real nice! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
squatty potty
D Dunninator
dgtracy I'll echo everything winterberry has said, i have one but i didnt find it useful really at all. i had the same experience with leaning back though, curious, maybe i will try it more as i never commited to always doing it. [ more ]
Winterberry Hi, Dunninator. When I had my colon I used a small footstool and it helped with elimination. But with my j pouch it does not seem to work. Maybe it is because the j pouch is in a different position to how your colon and rectum used to be, I am not sure. If you look on the Internet for side views on the way a j pouch is positioned inside, it seems that leaning back gently toward the toilet tank, as if you were going to lean back to relax in your favourite armchair, helps straighten out the j... [ more ]
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J-Pouch ForumsGeneral Discussion
Anal Cramping
FM Former Member
Winterberry Hi, WillieS. Don't strain. It could make things worse such as bleeding or fissures or hemorrhoids. Try leaning back gently when you are on the toilet seat, as if you were going to recline in your favourite armchair. For some reason, for me, this seems to straighten out the j pouch and gravity takes its course in a minute or less. Look on the Internet for side views of the j pouch and how it is positioned in the body. It seems that leaning back, or sitting up very straight and tall,... [ more ]
Spooky Hi Willies, Yes, I had the same issues immediately after my takedown. I would get a cramping that started shortly before I needed to have a bowel movement. It would stop almost immediately after I emptied the pouch. According to my surgeon, cramping is relatively normal after takedown - especially if you had a ileostomy for a time in between steps. It should improve. I think the cramping or "spasms" in my case lasted about 2 months, becoming less frequent and severe until they gradually... [ more ]
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J-Pouch ForumsGeneral Discussion
Painful joints, muscles, and weird skin
duck11duck11
Jan Dollar It takes a long time for a number of reasons. One is that general practitioners are not very familiar with it. Even the ortho surgeon and podiatrist I went to did not consider something global like enteropathic arthritis. My primary doc finally referred me to rheumatology when I had months and months of persistent low back/upper buttock pain. Another reason is that usually not much shows up on imaging until there is a lot of damage and labs are often negative. Having a rheumy who does a good... [ more ]
duck11 Thanks all, I guess this isn't as common to IBD as I thought. As a side and to clarify, I'm not on any meds and haven't taken Flagyl or cipro since my colitis days 15 years ago. Are there long term side effects you are referring to from these? Jan, did it take so long for a diagnosis because this form of arthritis isn't so well known? My blood tests always show high inflammation markers but it's always dismissed as being so from UC. [ more ]
Jan Dollar Could be meds you are on. But, I definitely would ask for a referral to a rheumatologist enteropathic arthritis (a form of spondylitis) causes inflammation at the insertion points of tendons and ligaments. What you describe fits. It is frequently diagnosed as something else and the diagnosis delay is often decades. I have been on biologics for over 10 years because of it, and my diagnosis was 10 years post colectomy. By the way, ALL of my labs for arthritis were negative and imaging was not... [ more ]
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J-Pouch ForumsGeneral Discussion
Venting and whining a little
J Jersey_Mike
Jersey_Mike I had my second follow-up CT scan yesterday and saw my doctor. There was "significant" improvement and I can eat again! Two weeks ago today was my last meal. That was rough. I'm taking it easy. I had some scrambled eggs for dinner and then a hot pretzel (the kind that are frozen and you heat them in the microwave or toaster oven) as a snack. I feel so much better already. I'm also off the IV antibiotics and took my probiotics again. The diarrhea has been pretty bad on all the antibiotics... [ more ]
Winterberry When you are ready to eat solid food again, go slowly, like a baby. My surgeon said expand my diet but chew everything carefully to avoid sending things to the j pouch that is hard or rough or partially digested. Do whatever you can to help your j pouch, don't make it work hard, whether it's chewing 20 times, or liquefying food into a soup or smoothie in the beginning. Be careful about blockage on your cruise -- where food will be available 24/7!!! Choose carefully the cruise food, remember... [ more ]
Janiep Hang in there Mike!!!! I'm so very sorry that you had to lose your wife to this horrific disease!! That is so sad! I can't even imagine going thru all this without my husband by my side. He is my rock!! Your wife will see you thru this! She is now your guardian Angel looking out for you from above❤️ You can do this and I swear it will get easier. It just takes time. Lean on those you love. Btw I do take VSL probiotics which is a prescription and has helped me tremendously!! Ask your GI about... [ more ]
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J-Pouch ForumsGeneral Discussion
General Information for a lost j-poucher!
YB Y2K Bug
Y2K Bug Thanks Winterberry! [ more ]
Winterberry Diagnosing colorectal cancer early when it is in its early stages and has not spread to other organs or to lymph nodes, is the best chance for recovery, plus any treatments before or after surgery. I hope your friend is recovering quickly. [ more ]
Y2K Bug Hi Winter, thanks for the info and taking the time to reply. Sorry for taking so long about it. I was speaking to another friend on Monday and the reason I hadn't seen her for so long was she was also undergoing treatment for a bowel cancer and an ileostomy! So this information is double worth it [ more ]
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J-Pouch ForumsGeneral Discussion
Question about biopsy result
mamaswansmamaswans
Kara Fred I had terrible cuffitis; the spasms and pain were awful. I used the mesalamine suppositories and hydrocortisone cream. Because I went to an ileostomy (now a K-Pouch), I had a rectal mucosectomy and life is so much better. [ more ]
Jan Dollar Short answer, yes. Cuffitis can cause the same symptoms as pouchitis. The treatment is mesalamine or hydrocortisone suppositories. It is a common complication. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Ostomy reversal was sooo easy
BD Blake D.
CeeeeCeeee I prefer the liquidy output because it is easier and faster to feel empty. As long as I have full control.....I do........the thickness of my output does not matter to me. It is the "new normal" for me! [ more ]
Nora S. I have tried it all, even prescription! It is frustrating, but knowing this is my norm makes it easier. At least I know there is nothing wrong! But I've tried it all, to no avail. Just a waste of my money. I stock up on barrier creams!!!! However, my life isn't impacted too much, I just need to make sure a bathroom is near or, if I'm going hiking or something, I just limit my food intake so I won't have to go. Life is much easier with a pouch as compared to life with UC however! I'll take... [ more ]
Scott F Nora, have you tried soluble fiber, like Metamucil? It generally thickens things up. [ more ]
See all 27 replies...
J-Pouch ForumsGeneral Discussion
Metamucil vs Psyllium Husk
B bwils
Scott F The health-food-store psyllium powder should be very similar to Konsyl. The dosing might be a guessing game, though. [ more ]
bwils Thanks. I have to get some next time I go to the US. Can't seem to find it in Canada. [ more ]
TinCan I actually have had much more success with just the powder (Konsyl). It's a bit like a sawdust smoothie - both in terms of flavor and mix-ability - but works great for me. [ more ]
See all 4 replies...

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William J. Johnson
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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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