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J-Pouch ForumsHelp! Need advice now!
Nightime
KR Katie R
Mysticobra Potatoes. I know it's weird. But mashed or otherwise have slowed me to a crawl with a pouch and with my ileo. Peanut butter does the same but not as good. But we are all different. Of course I don't know if you want to eat some mashed potatoes before bedtime. But I love buttered mashed potatoes! Lol. Good luck. R. [ more ]
Scott F In addition to Jeane's very useful suggestions you could try a small, fatty "meal" at bedtime (like a spoonful of peanut butter). Also, I'd suggest using the soluble fiber at mealtime. [ more ]
jeane You can try immodium or lomotil before bed and also adding fiber like Metamucil . Your pouchitis may not be fully under control if still having nighttime issues [ more ]
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J-Pouch ForumsGeneral Discussion
New J- pouch question
U UCWarrior2010
Jeff Kuhn @UCWarrior2010 ah I really hope it does! Thank for responding so soon! I will try the juice @JordySimo I'm 4 1/2 months post takedown. It's good to know I'm not alone. The strangest part is I'm on no Immodium or any medication and have this issue. Best of luck!! [ more ]
JordySimo I'm 3 months post-takedown and strain on the toilet, but I don't just sit down and strain really hard, it's more like a little push, but when the stool is passing, I naturally tense up. I've had no problems by doing this and my surgeon isn't concerned by it either. When I was taking 6 imodium tablets a day, the stool was really thick, resulting in formed pellet like stools. Now I've reduced it to 3 a day and also sip on apple juice through the day, it has loosened up and become easier to... [ more ]
UCWarrior2010 Hi Jeff, I am sorry that you are going through this. I was having this issue a while back so I don't remember precisely what worked. But, yes, I did find relief. It's been four years since my JPouch surgery and things have been good for the most part. So, while I don't remember how exactly this issue was resolved in my case, I can tell you that this is a temporary hiccup. I'd say try some of the suggestions that have been offered here. For example, have apple juice with each meal. Even now... [ more ]
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J-Pouch ForumsGeneral Discussion
Wound not healed
R Roger1066
skn69 Hi Roger, That sounds pretty normal to me. Most surgeons do not close up the old ostomy or stoma site. They leave it open to drain and to 'granulate in', meaning that tiny granule-like particles develop (they are white and look like tiny little spots) and slowly come to build up new tissue...the grow from the inside out and build up towards the surface. Although we all heal at different speeds depending on our state of health and our biology most of us take from 2-3 months to heal an old... [ more ]
JordySimo I'm just over 3 months post-takedown and I was also left with an open wound after my surgery so that it could heal from the inside outwards. The district nurse came to my house every other day to change the dressing. I still have a tiny scab on my wound which does not want to budge at all. The amount of purple on show is slowly getting smaller and smaller because of the new skin forming around the edges so I'm not worried. It was a big wound, it'll take a lot of healing. I still wear a... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Puffy pubic area
G grandmaof1
grandmaof1 Thanks for all the input. I never thought of the gravity and the surgeries. Boy, does my stomach look shocking. But that is ok. We are alive. Thanks again. [ more ]
TE Marie The j-pouch making, hernia, j-pouch taking it out and hysterectomy surgeries have left me sliced and diced horizontally and vertically. I don't have any abdominal muscles left and think this issue is due to everything sagging more. Plus there is gravity........ [ more ]
Lin Hi Grandmaof1, After my final J pouch surgery (August 2016), my body is a different shape. I weigh the same as before (I am on the thin side), but from my rib cage to my pubic area my skin hangs over (It doesn't in the pubic area, but that is probably because there is a scar there from two surgeries). I was so disappointed! You would think that when a lot of your insides are removed you might be thinner down there! Anyway, I consider this part of having a J pouch and not having an ostomy and... [ more ]
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J-Pouch ForumsGeneral Discussion
Squat toilets - Great for me. You too? Never tried one?
G GriffN
Former Member ❤️
Mary O My bm's are bit too ... explosive (apologies for the graphic nature of that description) ... for me to feel comfortable to use the sort of toilet that is in the floor. I also went looking for western style ones in the East. Sometimes I succeeded (usually it was a handicap toilet) but sometimes i just had to deal with it (which I hated). I am huge fan of squatty potty. I know they sell an inflatable one but I have not tried that. I travel quite a bit and when necessary (in the comfort of my... [ more ]
GriffN I've had some worse experiences. Like, in Hong Kong and parts of Singapore. If I have a lot to get rid of, though, I've never had any cleanliness issues. Biggest issue is I feel like an old man trying to stand back up. That's a perk, though. If you're using a squat toilet so often, it builds up some extra knee strength. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anyone develop thyroid issues after jpouch?
J jeane
TE Marie I had hypothyroidism before the surgeries but afterwards it went crazy. My dosage could not hold steady and I was getting a different strength every 3 or 4 months. I also had hair loss but part of that was due to going under for the surgeries. My GI was adamant that it be under control as the swings I was having were not good for my j-pouch function. A lot of it had to do with weight loss too. So there are many factors and I think going to a new doctor for a second opinion might be the way... [ more ]
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J-Pouch ForumsGeneral Discussion
RETURN TO THE FORUM - HUMIRA QUESTIONS
C capper
capper Thanks for the responses Jan, Linguist, Canlafre, and Bluebirds. Much appreciated. I have not yet tried weekly injections; obviously this is something my GI might look at. I am due for another 'maintenance' Humira injection today. 3 nights ago I came down with a bad cold with headache, night sweats, the chills, etc. Not sure about a fever. Just tried calling my GI's office to speak with someone but was unable to get a hold of anyone there. I assume I should take my dosage as usual but just... [ more ]
Brewbirds I noticed a huge difference when I switched to weekly injections. Have you tried that? [ more ]
capper I have now taken 5 Humira injections since late November. I have not noticed any change in my health condition for better or for worse. I know that it is important to give it more time. My doctor said that I should notice a difference by the 3-month mark if the drug is going to work. Does anyone have experience with Humira working well but being very slow to seeing positive effects? I'm starting to lose confidence that it will help. My doctor stated that when I get a scope done next, he'll... [ more ]
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J-Pouch ForumsGeneral Discussion
MiraFiber/Metamucil tablets?
K Knorrboy
Scott F The Metamucil powder is sweeter than I care for, so I now mix a half-dose of Metamucil with a half-dose of Konsyl original. All the powders mix much better if you shake them (rather than stirring). [ more ]
averyo99 The powder works really well for me too and I would do that over the capsules. Also, in buying another bottle I wanted to be cheap and save $10 so I bought the off brand kind (quite a difference in price!). Unfortunately, it doesn't work as well and actually has done kind of weird things with my stools. Back to the good stuff...lesson learned for me. [ more ]
Knorrboy Ok thanks. That's good to know [ more ]
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J-Pouch ForumsHelp! Need advice now!
Tags
J moonsJ moons
Winterberry Hello, J Moons. After my reversal I had frequency and output that burned. I developed screaming fissures and a skin tag, also called a sentinel tag or sentinel piles. They come with fissures and frequency. They form at the opening and you can see and feel them. I googled "anal skin tag" and found information on these sentinel tags. One article referred to the tags or piles as "guarding" (sentinel) the injury that is caused by the fissures and burning. I thought that was funny. I used a sitz... [ more ]
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J-Pouch ForumsGeneral Discussion
Large BMs
K Knorrboy
Winterberry Hello, Knorrboy. I am 12 months after my colon removal, and 10 months after reversal. In the first few months it was rarely the same one day to the next, and I realized it depended on what I ate, and when. A big breakfast at 7am might produce some loose results by 12noon and it might be "fragmented" pieces, small like so many pieces of Legos! My surgeon told me to expect fragmenting for some time until my eating habits returned to normal and I was able to re-introduce solid food with fibre,... [ more ]
Knorrboy Very strange. I have noticed that these occur more when my diet is not so strict (soda, junk food, greasy items) but it is not as consistent as I'd wish. I have my one year colonoscopy checkup in a few weeks. These just make me worried that something has come back but, with all other levels are within norms, I'm pretty optimistic thanks for the reply. If anyone else has some insight, it would be appreciated! [ more ]
averyo99 I am down to around 4 BM's a day too and I have experienced similar frustrations! Sometimes there is a large bm, followed by smaller ones, sometimes it is different colors, different consistencies.... Obviously what we eat has something to do with it, but I haven't found a lot of connection to bowel movement size. Sure, some foods don't work, but that doesn't seem to always be the issue. I agree that I don't think it would be a blockage. My only other thought is sometimes if I haven't been... [ more ]
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J-Pouch ForumsGeneral Discussion
pelvic mri for perianal fistula
C canlafre
Jaypea I just had 2 emergency mri's for rectal abscess and fistula. I presented to the ER with intense pain and a funny, ropey bit of tissue on my perineum. The surgeon knew exactly what was going on and I was admitted, started on IV antibiotics, booked for an MRI and then scheduled for the OR for an incision and drainage of the abscess and fistulotomy. The MRI takes about an hour. I'm home now and recovering nicely. Hope never to,have to go through that again. [ more ]
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J-Pouch ForumsPouchitis
Sulfasalazine as alternative for chronic pouchitis
LB Larry B
Larry B Thanks for the info. I see the it is in the same family as Azacol, which I used to take when i had colitis, before my J-pouch operation. I'll put it on my list for my doc to consider if I have persistent pouchitis. [ more ]
DJ H I've been on antibiotics for many years (10 now!) for chronic pouchitis and was recently put on Lailda (another form of mesalamine) for some cuff related issues. It seems like it is helping my pouch too. I am still on antibiotics as well, but my pouch seems better than it has been in a long time. I'm wondering if it is the Lialda making a difference for some reason. I'll get scoped again in a few months then we'll see how things look. [ more ]
Larry B Thanks you, Jan. I hadn't heard about Remicade before, but will remember it if it is needed to be aded to Sulfasalazine. Still hoping the the self-dilation will do away with pouchitis infections effectively. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchogram :(
K KC23
Lin I was so excited to get rid of my ostomy I would have done just about anything before the take down (kidding). If you have an ostomy then you would not have been using your rectum/anus for a while and nothing should be tender. I had no issues with the pouchogram--a very narrow tube is inserted , but not very far at all. No pain and no sedation needed. They need you to be awake to use your muscles to hold the tube in. You do not want to have the take down and have a leaky pouch. Think about... [ more ]
JordySimo I had to go through 3 pouchogram's before my takedown. Because things are tender down there, you'll maybe feel a slight discomfort when the thin tube is inserted (there will be a lubricant used to make it easier), but once it's in, you'll be fine. The tube is quite thin it won't cause you any harm. You'll be asked to roll into different positions which can sometimes cause a little tug but trust me, coming from someone who has been through 3 of these, it is nothing to be worried about... [ more ]
CTB23 My pouchogram was not difficult at all. No pain that I can remember, they just inserted a thin tubing with fluids, very controlled. It lasted about 10 mins. No discomfort. I remember my surgeon saying it would be more embarrassing than uncomfortable, but considering all the other "stuff", I had been through, it was a breeze. The radiologist and his team were great as well, and told me to let them know if it was uncomfortable in any way. Just my experience. I remember the prep being just... [ more ]
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J-Pouch ForumsGeneral Discussion
Bathing After Takedown
J JordySimo
Bobish Jordy, wouldn't worry about it mate. As you know im in a similar position (3 months out with the same purple scar and same releuctant scab (i think there is a stitch right underneath, hench slightly slower to heal). Ive been swimming and having a bath for weeks. Mind you i have also been using bio oil, and those Chinese vacuum cups (used for massage, they suck the skin into a cup using a vacumm, intention is to get the blood flowing to the scar). tbh i doubt thats made much of a difference... [ more ]
CTB23 When mine got to this point, my surgeon said to soften the scab with water while in the shower and pick it off! Made me a little nervous but I did it anyway. That was at about 2 mos. out. No issues with it at all. [ more ]
averyo99 I think at the point your scar is at the point where you are more than okay to take a bath. It sounds like your scar is healing pretty well! As long as it is a closed wound, my surgeon didn't seem to think soaking it would bother it. I was so glad to take baths! [ more ]
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J-Pouch ForumsGeneral Discussion
Has anyone ever used a TENS machine for muscle, ligament or joint pain?
skn69skn69
Elyash I don't know if hormone therapy disqualifies you. Sounds strange to me - but you never know about interactions. You could e-mail or call Fred Kahn from the website bioflexlaser listed above to find out. [ more ]
Mary O I have heard of similar laser treatment here in London. I was seeing a podiatrist to get orthotics for my shoes and he said I was not a candidate for it because I am on hormone replacement therapy (for menopause). Seemed crazy to me but I haven't researched it further. [ more ]
Elyash I have read a great deal about low level light lasers for treatments of inflammation and pain, I have only been able to locate one medical doctor in Canada who does this - but none in the USA and I live in NJ, close to NYC. But I have heard the Europeans are more advanced in this kind of treatment so you might check around in Paris. Its painless and I have heard results are permanent and it doesn't take that many treatments. The link below is to the clinic in Toronto so you can see what it... [ more ]
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J-Pouch ForumsGeneral Discussion
use of ibiprofin to reduced swelling
M MJFMJF
MJFMJF Thanks everyone for your comments. Most helful Mary [ more ]
Jan Dollar I was able to tolerate high dose ibuprofen for years to treat my various tedinopathies. That is, I tolerated it until I didn't. Eventully, I developed liver inflammation and pouchitis. I had to discontinue it, and the resulting flare of back pain led to a rheumatology consult and a prescription for biologics. The good news is that damage caused by NSAIDs is reversible. Jan [ more ]
skn69 I didn't know that IBprophene can cause pouchitis. I know that it is responsible for gastritis, bleeding in the stomach, other stomach irritations etc. I have been taking IBprophene for quite a while, for serious joint and muscle pain but I have never had any problem with pouchitis due to its usage. I usually hear that short term use is fine but that it should not be taken over time. Sharon [ more ]
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J-Pouch ForumsHelp! Need advice now!
burning has occurred after my take down
O Oepazmino
Former Member Use ilex protectant paste. I cleanse with toilet paper 95% of the time, no bidet or squirt bottle or special procedures and I only cleanse with wet wipes when I've had the need to apply the ilex paste or when the worse has occurred and I've had an accident while out. I apply the ilex for a few days the moment I feel the slightest itch or burning sensation. [ more ]
Winterberry Hello, Oepazmino. After my reversal, the ostomy nurse in the hospital gave me a jar of Zincofax cream, the type used on babies' diaper rash. I didn't use it right away, choosing to use Calmoseptine because that's what everyone here used. Calmoseptine did work for a few weeks but soon I found it irritated my skin a little bit so I read the ingredients: it contains menthol, and while menthol helps to cool the burn, it could also irritate the raw skin. So I started to use the Zincofax. I could... [ more ]
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J-Pouch ForumsGeneral Discussion
J pouche constipation
FrancescaFrancesca
Twilight For me, not really. I asked my surgeon about it one time and he was surprised to hear it but thought about it and came up with a diagram on why it would feel that way, of course I didn't really understand it, just I guess for a few people laying on your side puts your pouch in a position that makes you feel like you need to go. If I go to bathroom in the middle of nigh I might be able to lay on my side for a couple of hours before the feeling hits but I mostly stay on my back. [ more ]
Jeff Kuhn @Twilight I experience the same urgency when I lay on my side but not on my stomach or back. I am 4 months post takedown. Does this feeling ever go away? [ more ]
Twilight Something else to think about since you said it was at night. I always have to sleep on my back at night, the minute I move on my side it feels like I have to go to the bathroom and if I do go it's just a little bit and gas. For some reason it puts my pouch in a position that makes me feel like I have to go so I just stay on my back and I can sometimes sleep 9 hours without a trip to the bathroom. [ more ]
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J-Pouch ForumsGeneral Discussion
blockage
Corey1077Corey1077
grandmaof1 I have found that pure grape juice in small amounts will clear the way. Drink it slowly. My GI doctor had never heard of it so he looked into it and it's the ingredients that break it down. But honestly I always have it on hand and freeze it small amounts. And sadly I can't remember if it's the sugar or something with the grapes. I'm sorry. It was a long time ago. It does work like a charm. I hope this helps you out. sorry I can't remember the details. [ more ]
skn69 Walking, stretching, rolling from side-to-side on the floor or on a yoga ball, doing very mild yoga or pilates, hot baths, massaging the zone with hot oil (helps the hands slip over the area easily), hot green tea (unless you are throwing up), walking again, bouncing up and down on the balls of your feet, bouncing on a yoga ball, bouncing more, keep bouncing, walk some more, use a heating pad... When all else fails, I wait 24 hrs before heading out to ER...most often it breaks up by then . I... [ more ]
JordySimo Massaging in the place you feel the blockage is always helped me. Sometimes doing this whilst lying on your side also helps but other than that, just go for a walk about or something. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Can't control jpouch at ALL!! Help me please :(
P Pams86
Pams86 Thank you so much for the advice.. I will definitely give it a try. I hate to think I went through all those surgeries last year all in vain Thanks again Pam [ more ]
Winterberry Hi, Pams86. In these early days when your pouch is young and learning how to live its new life, see if you can eat simple, whole foods (no highly processed foods). Cooked white rice, potatoes, toast with peanut butter, soft cooked egg, fresh steamed fish (no frozen fish fingers!), plain baked chicken with salt, pepper, olive oil, plain tea or water. Look for food that is nutrient-dense and help thicken your output so it doesn't burn your skin. Keep your diet as simple as possible for now. No... [ more ]
GriffN Hey, Pam. I've had frequent flares and urgency ever since I had my j-pouch surgeries 6 years ago. For me, immodium often doesn't help. I've tried a lot of meds and diets that just don't help. Even if you're doing everything right the best you can, sometimes it just doesn't help. Hopefully you'll have better luck. The previous posts have a lot of good suggestions and things to bring up to your doctor. One thing that's helped me sleep and get out of the house comfortably, though, is wearing... [ more ]
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J-Pouch ForumsGeneral Discussion
Stoma bleeding
K KC23
TE Marie I use the barrier rings and not the paste too. I had a horrible time with my skin and went to the local stoma nurse as well as additional appointments with the Mayo Clinic Stoma nurses. Mayo is 3.5 hours away but that is where my surgeon is. Both local and Mayo nurses have me roll half of a thick ring into a worm like fashion and use it instead of the paste. I put the "worm" around the opening and press it down a bit before putting on the appliance. Hopefully changing to this will help your... [ more ]
KC23 Thank you, I know it's normal to bleed but since I had a blockage it has been swollen and blood is larger around the stoma, it's not the normal blood you would usually see. I also have a imprint of where the seal is made on my skin, but idk if that's just where I have had my stoma since November 8th, 2016. My take down is at the end of February so I hope all goes well. It's just been painful taking off my wafer even with my adhesive remover spray. I guess since my skin is so irritated. I'm... [ more ]
TE Marie In addition, have you tried stoma powder? I use that and a barrier spray. When skin is bad apply stoma and then the spray several times to protect your skin under the appliance. These are both sold on amazon but your stoma nurse or doctor can prescribe them for you. It depends on what your insurance will pay for. My stoma bleeds some. I think some of it is normal. Mine also can get larger. If yours gets really large then putting plain white sugar on it will help to reduce it in size. I read... [ more ]
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J-Pouch ForumsGeneral Discussion
Feeling Less Positive
J JordySimo
CTB23 Urgency/feeling uncomfortable, for me is also usually between these times as well. Once I give into it, I am good for the night. I also take 2 Immodium around 10:00 and usually good until the next day, anywhere from 11:00-2:00, depends on the day. My frequency is higher the latter part of the day. [ more ]
JordySimo Thanks for the comments, everyone. I took on board a couple methods and leaning back really does help get things moving. I also bend forward on the toilet and put my head between my knees which also helps. Just like Bobish mentions, I also get off the toilet, but ten minutes later I'm feeling the need to go. Hopefully this will eventually disappear once my urgency settles. I can cope with certain urgency for hours but it just puts the thought in my head that I need to be near a toilet at all... [ more ]
Bobish Jordysimo.... Im in a similar position to yourself. im 3 months out from my reversal, and like you things are fairly good with regards to frequency (5 times a day ..ish, but i wake 1 or 2 times a night) i dont really have urgency (i mean i can hold for hours), but i do feel like i always need to go to the bathroom. For example i have just been to the bathroom, its feels as if i need to go again already, but i know i will be fine for another 5 or 6 hours at least... but the sensation is... [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch output/digestion after gallbladder removal
SP Scotland Pouch
manolo8578 Thank you for your encouragement! [ more ]
manolo8578 I had Pancreatitis twice,and jpouch, I'm scheduling gallbladder surgery today! [ more ]
Scotland Pouch aka KNKLHEAD , yes, let's just get rid of all the ticking time bomb organs. They are such pests. Anyway, really glad you didn't notice a change in output. It's such a fear of mine (followed by wondering how long it'll take to get back to regular exercise post-op)! I don't need my toilet life to get any more complicated or annoying. skn69 , it definitely wasn't a cardiac thing. I'm young (29) with a very healthy heart (excellent diet, lots of aerobic exercise) and no history of any problems... [ more ]
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J-Pouch ForumsK-Pouch Korner
Valve Self-repair
C Creampuff
skn69 Creampuff, Those are 2 different problems...A slipped valve and a crooked valve. A slipped valve has usually something to do with some sutures inside the valve letting go or ripping or the staples popping out and the valve no longer being continent. A crooked or angled or twisted valve are totally different. Sometimes the valve can heal too quickly on one side more than the other or your stoma can 'sink and cause the valve to twist (like a corkscrew) as it sinks into the valve (think socks... [ more ]
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J-Pouch ForumsGeneral Discussion
Surgeon in Asheville, NC
Corey1077Corey1077
Corey1077 Thanks!! [ more ]
J moons Dr. Karuda at UNC is a phenomenal J pouch surgeon. He does 3-4 a week. Dr. Hans Herfarth has a clinic at UNC solely for J pouch recipients on a Wednesdays. I live in Charlotte and drove the 3 hours to UNC for two years of visits but I finally decided to see a doctor here in Charlotte Bc the drive is too long since I'm doing well these days. The doctor I see is John Hanson at Carolinas Digestive Health but I was also recommended to see Dr. Mohanty. [ more ]
Corey1077 I am a 39 year old male. Names? [ more ]
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J-Pouch ForumsGeneral Discussion
Importance of sigmoidoscopy after j-pouch
M MrVernon
Jan Dollar Poucho, Even if your dysplasia was in a removed part of your gut, you still have the history. This means that your genetics are such that you are at more risk than someone who never had any evidence of dysplasia. Jan [ more ]
CTB23 Thanks, Scott. I will have my first this summer and expect to pay 20% of the contracted amount with Tricare. The first will be with my surgeon and I am hoping he will do them for a little while before I have to find a GI that I have confidence in. My last GI doctor and I have parted ways due to his non aggressive treatment of my case. I will also be eligible for Medicare and Tricare for Life 2 years from October so hopefully this will cover most of the cost. [ more ]
MrVernon Thank you all for your input - this is very helpful. I truly appreciate having this forum as a resource. [ more ]
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J-Pouch ForumsHelp! Need advice now!
3 Questions
tenaciousCtenaciousC
sudie Hi Christian have had my take down same time frame as you lots of troubles constant toilet trips skin breaking my husband brought me a bidet love it hate to leave home , found Sudocream which is Zinc oxide base really good carry small tube with me when I go out also have had great success with FODMAP the Monash app is really helpful when shoping I had a dietician help me through and explain how and why it works has greatly helped my problem lately has been blockages just has adhesion surgery... [ more ]
JJA Bidet!!! Changed my life!!! Almost never have anal area skin issues any more, and I have a messed up sphincter to boot!!! I have a biobidet i3000-no electricity needed, $100. It more than paid for itself in just a couple months due to no more wipes, creams needed. prior I had about a 4/10 pain in anal area all the time due to chronic anal tissue breakdown. I also find my continence is much better when the anal tissues are clean and healthy-before was a downward spiral of broken down/sore... [ more ]
MikeTexas Christian, Thanks for a good chuckle "give it a whirl" Miketexas [ more ]
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J-Pouch ForumsGeneral Discussion
Somehow 'lost confidence' in my pouch
E ElSur
JJA Anal pain was often my first and primary symptom of pouchitis, later followed by night time incontinence (but I have a bad sphincter, so with a good sphincter the anal pain alone could have persisted for much longer before nighttime incontinence would have set in). Lots and lots of treatment options, but agree you need to get a proper diagnosis first. Dont let treatable symptoms get in the way of living the life you want to live! [ more ]
TE Marie There is several other treatments. My Internist looked up the textbook treatment and prescribed for me once. Anucort, hydrocortizone is a good inexpensive suppository and Canessa is the expensive Mesalamine one. There are also enemas. I could never get it fully under control even using both types of suppositories daily. I am not the normal case as my j-pouch ended up failing. [ more ]
Scott F It's best to get a proper diagnosis before treatment, although in some cases treatment can be the best way to confirm a diagnosis. I wouldn't usually put cuffitis in that category. The fact that mesalamine failed to control your UC isn't good news, but it's also not a guarantee of failure for cuffitis. You can essentially bathe the rectal cuff in mesalamine, which you were never able to do to your colon. The side effects of mesalamine tend to be much less troublesome than steroids, which is... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blood mixed with mucus and water
E Enterin
TE Marie You need to call your surgeon. There could be several problems so. I think it is possible to have cuffitis before take down is one possibility. Your English is really good ☺ [ more ]
Enterin The reason for my surgery is UC. I ate it and similar foods, but the food does not go to J-pouch ... Sometimes very little pass ... Poor I moved last month, a lot of sitting . [ more ]
Not your average gal! I don't remember having any bleeding issues with the temporary ileostomy, and I have had them two times--one for the total colectomy and the other for a bowel reconstruction of the entire J-Pouch a year and a half later. My best advice to you would be to call your doctor. Have you eaten anything thing that might be irritating like popcorn or nuts or celery, etc.? I know I had the colectomy for cancer and Ulcerative Colitis, but after the first surgery, it was determined that I had Crohns... [ more ]
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J-Pouch ForumsGeneral Discussion
Hope I can be helpful - Hello from Japan
G GriffN
GriffN Hey, 07KRO. I had the surgeries a few months after I finished university - actually had the colectomy on my birthday. Takedown was a month later. In-patient recovery was about a week, but I was in the emergency room just a day later. Complications from ileus kept me in the hospital for another month. Basically, my intestine forgot how to work and wasn't moving anything through. I'm not sure how common the problem is, just that there's a chance with major GI surgery. Three weeks after that... [ more ]
07kro I am actually in a very similar situation. I was living abroad but had to go back since my ulcerative colitis was acting up, they found dysplasia, and it was decided that I needed surgery. I wanted to get surgery in my home country, so I went back. I have now had my first surgery (out of 3), where they created an end ileostomy. Things are going well, but I feel that I probably want to go ahead with the rest of the surgeries soon. I wanted to ask how long you waited after your final surgery... [ more ]
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J-Pouch ForumsGeneral Discussion
Lorazepam
G GraceB
GriffN I've been taking benzodiazepines for a bit over a couple years for anxiety and sleep. I can echo what was said above. 1mg is a tiny dose; I'd be surprised if you had any withdrawal issues. Any symptoms would be very minor, if noticeable at all. Also, there are a lot of alternatives to lorazepam. If you wish to continue with the same type of treatment, your doctor will know a variety of similar and affordable meds. [ more ]
Spooky Lorazepam is generally a prn med, meaning you take it as needed. I've been prescribed Lorazepam at varies times in the past (although never on a long term basis) and I've never had a problem coming off it. As Scott mentions, it would depend on the dose and how frequently you used it. If you were only taking 1mg a day, here and there, yes that is a very small dose you probably won't have any issues stopping the medication. However, since it has been prescribed to you for a number of years, it... [ more ]
Scott F Grace, when you write that you're taking 1 mg, how many times per day is that? If it's 1 mg per day that's a very low dose, and you're likely to have excellent success withdrawing from it. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Great luck with iron (knock on wood)
J J9Pouch
J9Pouch I get it from my local health food store. It's pricey - I think about $40 a bottle, which lasts one month, but is totally worth it to me. I just try to think of it as a co-pay for a brand name prescription I believe you can find it online if it's not in-store near you. I've definitely had way better luck with it than with pills. [ more ]
CTB23 Good to hear about the Floradix iron and herbs. Where do you get it from? I often wonder if the pills I take are absorbed. [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
something a bit different this time
Marcus1959Marcus1959
Marcus1959 Thanks Jen... I have written all this down to give to Dr. tomorrow for my examination. All helpful information. Praying it's something simple. As I said it does not have the pouchitis feel to it this time... frequency or need to go to the bathroom is way down. I remember my pouchitis being 30 visits sometimes in a day with little or no relief but thankfully nothing like this. Just when the need to go is there, it's tough without straining and patience to get much result. If anything the... [ more ]
JenB Hey y'all, I though about it, and I think that my doc used Canasa suppositories for the tenesmus. Also wanted to let you know that Desitin, Balneol cleansing lotion, and RectiCare (Lidocaine 5%) anorectal cream(relieves pain/itching/burning) are VERY helpful when you're going a lot. J Moons, I also had the botox (or some sort of) injections in the anus (not painful- although you think it would be) and it helped. I no longer have any leakage. I did for a while after, but it corrected itself... [ more ]
Marcus1959 Thanks Scott. Yes hoping they can see what's going on. Suppose to fly south for 2 weeks in the sun next Saturday. I'd hate to miss it. Mark [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Belly changes after our surgeries..?? guys?
PouchomarxPouchomarx
Pouchomarx does anyone elses midline scar stay close to their body? like tight and up close? I have seen photos of overweight people where the midline scar just follows the curves of the stomach. it seems if I got a big belly the fat would just accumaulate around my scar?? [ more ]
aka KNKLHEAD I have had about six surgeries where they dove into my stomach. (I lost count!) I have a small gut, but the surgeries have all but made it so I'm not going shirtless any time soon. For the last surgery I asked the surgical nurse about "cleaning it up, doing a bit of Lipo" as a joke and she said, "welcome to your new stomach." In other words, not too much can be done. I think the best I can do is try not to put on weight, keep the fat content under control! [ more ]
Mysticobra All I can say is I had a nice smooth flat belly before. I'm slim also. It's all screwed up after four surgeries let alone ten! Lumpy bumpy. I have a thin crater scar and no belly button but pushing 61 and being married 39 years. We don't care. Lol. I have a small spot that has not healed from the removal of my pouch. After 15 months! Well I went in yesterday and she cut it open again. Not the first time. But she asked me if she could cut to the side a bit. Didn't want me upset at the way it... [ more ]
See all 3 replies...
J-Pouch ForumsPouchitis
BCIR and cuffitis
GW Guy with j pouch
TE Marie CLARK, I hesitate to suggest this as it is what I had to do to empty my pouch out before getting diverted to a permanent ileostomy. I have a bidet seat and was using it to give myself enemas 4+ times daily. When I had to be away from home I gave myself manual enemas. It felt much better than straining. I am not suggesting anyone does this without discussing it with your doctor. My Mayo GI and surgeon both knew I had to do this as they both had dealt with the strictures that prevented me from... [ more ]
athena I will have to research that option too, Clark! I'm on several meds for frequency at baseline w my pouch. Many foods I would prefer to eat either get stuck at the site of my ostomy repair or cause more bms. I have done bone broth now for a month and no better. Made it myself, nice and rich, but it wasn't enough. I had antibiotics for 2 rounds, and I am finally feeling better. Now I want to maintain without having another course. I already take probiotics. My situation was complicated from... [ more ]
BillV Clark, I completely agree with TE Marie’s suggestion to be referred to a specialist who might be able to reduce the problems you are having to an acceptable level. If you cannot find one in your area, you could consider going to the Cleveland Clinic or Mayo Clinic. If it finally comes down to pouch removal, you might wish to check out the K pouch and closely related BCIR that do not require having an external bag. Both of these procedures have a high success rate and high patient... [ more ]
See all 50 replies...
J-Pouch ForumsGeneral Discussion
April Pouch
M Mcvm
Mcvm Thanks folks. Ya I want to continue to play hockey goalie so a pouch is definitely on my mind. First surgery done but I was hesitant to accept a Feb pouch. [ more ]
averyo99 I agree with the Scott. It has been said before that most of the people that are doing really well aren't online. J pouch surgery can often be a real positive thing. Even with my problems with pouchitis I wouldn't trade my pouch. And I am still in the adjustment stage! [ more ]
Scott F The substantial majority of J-pouchers have few problems and are pleased with their results. The others (or at least many of them) come here for support. This is a great place to find out what can go wrong, and a terrible place to find out how common those outcomes are. [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Pouchitis?
K KC23
KC23 Hopefully it isn't a leak �� [ more ]
KC23 My surgeon said the leak was a possibility, but my fever went away and inflammation decreased with anti biotics. I had my rectum removed and j pouch created December 27th, 2016. So maybe it was just inflammation from the surgery. I also have been on nutrient bag (TPN) for the past wk so I just started eating real food again. I have been taking Imodium too it's just so hard to drink enough to keep up with my output.. [ more ]
J moons You can have tiny leaks that are not visible on CT scans. Sounds like a slow leak building an abscess, especially with the fever and pain. [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Blockage Hell and What to Do About it?
SmoothDouglasSmoothDouglas
sudie Hi Douglas Just an update had another blockage was given the gastrografin orally but became guide I'll they put a tube Ng in was vomiting so hard came out of my mouth was transferred again to my surgeon ended up having surgery for adhesions by lapro he worked for one and a half hours leaving some behind he was surprised how many I had only been home a few day so will be a waiting game now to see if this resolves [ more ]
skn69 Smooth, I guess that that is good news...no stricture means that nothing obviously mechanical is at work...other than possible adhesions which do not show up on that sort of test. Avoid the All bran, maybe switch to oatmeal? Something that hates your guts a little less? My worst blockage was caused by a can of coke...literally. (But I did something really stupid...I drank it in one long gulp, then immediately lay down with my legs up against a wall (that is how I relax my lower back)...I... [ more ]
Scott F CLZ, I think you're painting an overly dark picture. For adhesions to cause obstructions they have to end up in especially troublesome places. Most people with adhesions never experience an obstruction. Also, surgery to fix adhesions does have a fairly high rate of problem recurrence, but it's certainly not "inevitable." You may well never have another episode. Nevertheless, I agree that the recurrence rate is high enough that expectations should be limited. [ more ]
See all 13 replies...
J-Pouch ForumsHelp! Need advice now!
Pooping on myself
BritBrat88BritBrat88
skn69 Britbrat, I am so, so sorry. I know what it is like to feel 'unclean' and not in control of your bowels. You might want to have your pelvic floor checked out. You had a pregnancy, delivery and then repeat abdominal surgery all in a very short period of time...you have developed pelvic floor dysfunction that reduces your ability to tighten those muscles and keep control. There are exercises that you can do (you can find them on various Youtube channels or talk to a physiotherapist or doctor)... [ more ]
Scott F Britbrat, getting that stricture dilated should make things a lot better, though it sometimes takes plenty of patience and repeated dilutions. You might also have pouchitis and/or C. Diff - those should at least be ruled out. Good luck! [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
Chicago area pouchers
Kara FredKara Fred
clz81 My GI is out of Rush in Chicago. He has clinic out of both Chicago and also Skokie (I live north of the city). I absolutely love him. My surgeon left a few years ago and I didn't really like the surgical team that replaced him. If you only need a GI though, I highly recommend him. He works closely with the surgeons at Rush so of course that is who he would refer you to if you needed surgery, but I have no clue who any of the surgeons are there anymore. Feel free to PM me if you'd like more ... [ more ]
Todd C I am on thirty years of really having no issues. I recently ran into a issue with pouchitis and was not even sure as to what it even was. I called the University of Chicago and most all my doctors from the 80's were no longer alive or practicing. I actually found the Dr who treated my UC prior to my original surgery and found out he is still practicing. I actually sat with him last week and have a scope scheduled for later this week. Again this feels all new to me as this is the 1st time I... [ more ]
See all 2 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Struggling in First Trimester Pregnancy
AshleyAnnAshleyAnn
clz81 Ashley, I hope you are doing better!! I needed to be on antibiotics my entire pregnancy. Fortunately, I was able to take Augmentin, but sounds like you are not. Flagyl is not usually recommended in the first trimester, but I know for sure there are women who did low doses. I don't know much about Xifaxan and pregnancies, but typically the nice thing about Xifaxan is that it is less systemic than other antibiotics. It is however, Category C, based on studies with animals. I hope you have... [ more ]
little greeny Ugh you described my first trimester exactly. I was so scared I was going to be admitted to hospital due to weight loss dehydration. I found the most helpful thing to manage the dehydration electrolyte popicles (I made them myself) and chicken broth. I also drank two ensure plus calories a day to give baby some nutrition. My stool was not formed at all (entirely liquid) and I just attributed it to morning sickness. I don't know if I had pouchitis but after one round of antibiotics-... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
What's the best way to clean out for scope day?
G grandmaof1
Scott F Some folks limit their diets to clear liquids the day before. This help keep the pouch from getting new "deposits" after the enemas. And yes, just tap water enemas, comfortably warm water. [ more ]
BillV I found that two and sometimes 3 enemas did the job and the water does not have to be very warm. Once your output is reasonably clear, no more enemas are needed. [ more ]
jeane I use one fleet enema followed by one enema w warm water. I too get burning w fleets. I've never had an issue and have had nunerous scopes all with very good visibility. No food or drink after midnite. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Explosive-ness?
C ColoradoCarrie
CTB23 Good advice, I find where the most private bathrooms are when I can. [ more ]
TomU The best advice I can give here is simple - use the disabled toilet so you have more privacy and can relax. No need to worry about noise then. I always do this. if looking for a new job, toilet facilities are a major consideration for me. [ more ]
Jeremy S Anyway you can. Fan, faucets, loud coughing sounds. Anything is better than screams of pain!!! Feel very fortunate if no one has heard you yell in agony during one of those episodes. Which reminds me: Stay Away From - "Bear Naked Whole Grain Energy Bars" or any whole grain strong fibers unless you want to invite one of those episodes. The energy bars are very small yet dense and make you feel overstuffed; like you want to go now but you really don't even need to. They also put one of those... [ more ]
See all 28 replies...
J-Pouch ForumsOstomy & Skin
Change days?
MysticobraMysticobra
Mysticobra I like to wash it without it on. It just feels good and it's a safe place to be if it starts acting up. I clean all the skin where the barrier sticks so by the time I get out and dried off all I have to do is apply it. Convetec has a tape around it that if it gets wet it's just not the same. Best just to shower with it off. I'm comfortable with it. Richard. [ more ]
TE Marie I have all sorts of hydrating fluid additives etc. The WHO like packets off of amazon.com and another liquid concentrate work well. NUUN tablets are fantastic. When I get the IV fluid my electrolytes always test on the low side of normal so you can need IV fluids and normal range electrolytes. I bought a stoma cup. I put it on with an ostomy belt. This is placed over the stoma to catch any output that might happen while getting your appliance ready. I put toilet paper or part of a paper... [ more ]
crohn's j-poucher Great progress Richard woohoo!! How come you don't just shower with the appliance on and change it after the shower? [ more ]
See all 27 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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