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J-Pouch ForumsGeneral Discussion
Exam under anesthesia/seton
B bratcat
Shainy I had an eua 10 days ago. I think they gave me a local anaesthetic too because it was only a day after I felt sore around the anus. Had some bloody mucus and discomfort for 5 days after but didn't stop me from doing anything [ more ]
res I've had two EUAs, one in June and the other last Tuesday. I had a bit of draining for a day after the initial EUA. Dr. Shen and Dr. strong at Cleveland Clinic cleaned up an abscess. Then, I had another emergency one done last week with Dr. Hull at Cleveland Clinic. I had an abscess form very quickly that ended up being quite large 6cm x3cm. They had to remove a 2 inch patch of skin that was very infected and also placed a seton. I'm still incredibly sore and unable to walk because of its... [ more ]
rachelraven I've had a seton for over a year. The first one I had (that broke in the office) took away the pain and quit the site draining; the replacement has never felt great, has its own "cycle," and it has a small mucus drainage all the time that necessitates wearing a 2X2 gauze. I can't get a Crohn's dx, because otherwise, everything looks "too good." But the EUAs are nothing. I request actually no fentanyl or versed, only Propofol and IV Tylenol (yep, IV), so I can wake up and not be groggy. [ more ]
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J-Pouch ForumsOstomy & Skin
Jpouch removal after 22 years
G goldie
goldie Thank you all for the feedback...I have an appointment next Friday with my surgeon to ask more questions...I was hoping to put off surgery until December but I don't think it's realistic anymore...again, thanks for the support as it's greatly needed...debbie [ more ]
Lambiepie Clicky, how was your year with the ostomy but still having the jpouch and why did you do it in two parts? I'm scheduled to do the whole thing at once and am a little nervous as, according to posts here, this is a major procedure. [ more ]
Clicky I'm having my jpouch removed too in three weeks! I have had the ostomy back for a year now but will be getting the jpouch removed and a Barbie bum... The ostomy is no big deal now, but I am worried about the surgery. When is yours? [ more ]
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J-Pouch ForumsHelp! Need advice now!
burning pain /bowel movement
mariamaria
Scott F Maria, lots of folks report that standing up sometimes releases a "second wave" of poop. I don't have the patience for 15 minutes on the toilet, but if I notice that I need another round after I stand up, that's fine with me. I'm lucky to not have any pain with it, unless I have active pouchitis. [ more ]
jeannie Marie I hope you are slowing your stools down with lonox. The first year I took 3 in the morning and 3 at PM. It helped. Also you can get a catheter from Edgepark pharmacy 30 French and put it up your rectum to empty your jpouch. Kock pouch people use it to empty. I did not know this little (pearl of wisdom) the first 6 years of a burning rectum. I have just gotten a permanent ileostomy. If I knew this was where my journey with Ulcerative Colits ended I would have stayed with catheterizing... [ more ]
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J-Pouch ForumsGeneral Discussion
10 years after op & now getting stomach pains
J jen85
IdahoLisa I had the same pain and thought for sure it was something to do with my j-pouch surgery. The GI suggested we go to the hospital for xray of some sort and to my shock it was my ovary and it was enlarged. I had surgery the next day to remove it. Doc thought for sure it was cancerous and to my luck it was not. So even though you notice with food choices I would still have it checked. BTW if I have one more part of my body taken out I will scream...lol [ more ]
katey I had my gallbladder out in December and have had no issues at all. Happy I won't wake up at night with that awful pain again! katey [ more ]
Roni Have a gallbladder that needs to come out. I have one large stone that has grown from 2cm in 2001 to 4.3cm currently. But- sounds like so many people have diarrhea issues after surgery. I'm afraid of being tied to the bathroom again. Last night it felt like my gallbladder ruptured, but I don't have any symptoms like fever, ongoing pain, etc. Just very mild discomfort. Scared me enough to start seriously thinking about removal, but seriously sometimes I feel that I'd prefer death over being a... [ more ]
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J-Pouch ForumsGeneral Discussion
Awareness article on IBD I wrote for work
ElmerFuddElmerFudd
Lesandiego You are so very brave! When we hide our disease, we feel shame. When we announce to the world all that we have suffered, we feel proud of our battle scars. Ps: I was originally diagnosed with Chronic Proctitis, which on its surface can be very shameful if you automatically assume I contracted it via sexual transmittal.....which I did not, mine was the second category of "auto-immune". [ more ]
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J-Pouch ForumsOstomy & Skin
Excision of jpouch
K kennyboy
kennyboy Thanks Eric I have had it done now it's all gone and I'm at home recovering I was in hospital 8 days and like you say it was pretty tough surgery but it was soon over and I don't regret it at all my bum does feel strange but it's only day 10 and time is a great healer ,thanks everyone for advise I'm so looking forward to getting back to normal health .. [ more ]
Eric I had it done June 2012. I can't lie, it was a pretty rough surgery, BUT, so worth it! My J pouch was falling apart and I was in agony 24/7. After the surgery, I'm pain free! Not much I can offer in the way of advice as everyone reacts differently, but I will say, within a few days, I started to feel so wonderful, and the pain was gone! It took me about two weeks to recover enough to go home, and about six months to feel completely recovered. Just don't rush it, take all the time he needs to... [ more ]
aka KNKLHEAD I wanted to bump your post. I think you might be better off posting this in the "general" forum. I might be having an excision in the future, but sorry that I don't have info for you. Best wishes for him! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Post Surgical Abscess Question...
ATXGuyATXGuy
ATXGuy Thank you Dan. Really solid information. I see my surgeon today, so I'll be sure to make sure to ask when he doesn't think I need a drain... best, b. [ more ]
Lesandiego My drain bag was inserted on my abdominal left side. Guess I was just one big leaking infectious mess after my colon perforated in multiple places. [ more ]
Pouch4Wf Hi ATXGUY, Intra-abdominal abscess are collections of infectious fluid in the abdomen. Right after surgery some fluid in the abdomen is normal. However, infectious fluid that collects into a pocket are referred to as an abcess. Abcesses often form 1 week to 3 months after surgery. From J-Pouch surgery can be caused by a few different things. 1) Pouch Leakage: If there is any pouch leakage, the bacteria that escapes will cause an infection. 2) Anastomosis Leak: The connections that are made,... [ more ]
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J-Pouch ForumsGeneral Discussion
fatigue
HockadooHockadoo
phonix2g I had terrible fatigue for about 6 months after my surgery. Due to the loss of blood my hemoglobin levels were half of what they were supposed to be I was extremely anemic and lethargic. I would advice you to get a referral to a hematologist and get all your levels checked. Request a B12 shot also I'm sure you will have no problem getting one. I got one from my hematologist and then my Surgeon not to long after that what a difference. I was on iron pills for a long time but I ha to stop... [ more ]
ks1905 Amstobar, Thanks for the advice, I took your suggestion and upped my calorie intake over the weekend which made a big difference in my energy levels. [ more ]
Amstobar For me, because of the excess gas and initially high bathroom trips, I've been slow to increase my food intake. The lack of calories caused a lot of fatigue. Over the last few weeks, I've been returning to a normal diet (though spaced throughout the day), and my energy has returned. There was a very direct correlation, and though it seems obvious, I didn't always realize it. I'm six months post take down. [ more ]
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J-Pouch ForumsGeneral Discussion
how did you feel after long term prednisone?
TheRealBrettTravisTheRealBrettTravis
Scott F It might be informative to resume the last dose that was okay for you to see if the symptoms disappear. It can take a very long time to regain normal adrenal function. You might have simply exposed a condition that had been masked by the prednisone, but if you've stopped it sooner than your body can pick up the slack that's not so good. Or Liz's approach might get it over with sooner. [ more ]
Pluot I did not take prednisone for nearly that long, but I had excruciating joint and muscle pains as soon as I hit 0 mg. My knees felt like they were full of broken glass and I could barely move the muscles in my legs. It went away on its own after a very unpleasant week. I hope your symptoms go away on their own as well!! [ more ]
ks1905 I don't miss it at all. I had the stiffness, joint pains, and exhaustion as soon as I got to 0 mgs. I was miserable but I remembered my GI telling me about Sulfasalazine also being an arthritis drug as well as being used for UC. I started up the Sulfasalazine again and it really helped with the joint pains and stiffness. He originally gave it to me when I first started Predisone to help with some of the side-effects and the UC flare. [ more ]
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J-Pouch ForumsPouchitis
How do I change my diet?
BebeksporBebekspor
CTBarrister You definitely can. It's true that the strict gluten free diet is for people with celiac disease, but there is some overlap from what I have seen in analyzing various diets that are being promoted for IBD. The Paleo, SCD, Fodmap, UMass and other diets, while having various differences, do have some common themes. One is to reduce carbs and sugars, and develop an intake of more complex carbs. This involves getting rid of white flour or all purpose flour, and instead using almond or sorghum or... [ more ]
Bebekspor I remember cutting out my daily desserts and sweets when I had gestational diabetes. Once I got through a few days, the sugar cravings did minimize. I think I can do this! I read on CC only to go gluten free if you have celiac disease. When I tried going gluten free before my surgery (last ditch effort), my body hated it! Apart from my sweets addiction, I really don't eat that much sugar...I make the yogurt at home, from a scoop of plain Dannon and regular whole milk. My husband read a paper... [ more ]
liz11 low FODMAP is an elimination diet with the goal of trying to figure out the worst triggers. Get the book I referenced in my FODMAP post, it explains everything in vast but understandable detail. White bread and white pasta is NOT low FODMAP. and also a lot of fruits are ok, but some are extremely high fodmaps - like apples and mangos... feed these bad bacteria. So yes you definitely want to eliminate certain fruits but you can eat others. look at that chart in detail. CC pirated it from the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Painful Internal Bump
J JLG5045
JLG5045 Thank you everybody for the advice. It was an abscess. Spent all day/night in the ER yesterday. It did start draining itself but surgeon wanted it drained completely. Which is what they did. They then left a little gauze in there to help it continue drain if needed. Was feeling ok afterwards but today feels like the spot is hard and tender. And still very uncomfortable, so hard to keep the area clean. Of course concerned about continued infection. They gave me cipro and flagyl and told me to... [ more ]
Jan Dollar Yes, sounds like an ano-rectal abscess. Call your doctor. In the meantime while you wait for an appointment, do hot sitz baths 4 times a day (or whatever you can fit in), to help this localize and be ready to lance. Jan [ more ]
Scott F In the meantime you might get some help from plenty of sitting in warm/hot water. If it's an abscess hot soaks can help it open up and drain naturally. [ more ]
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J-Pouch ForumsGeneral Discussion
PGX, is it safe?
Alli AndersonAlli Anderson
Spooky My personal opinion is to stay away from these type of supplements/diet pills, etc, but honestly, you would have to talk to your doctor. My understanding of PGX is that it forms a gel-like substance in your stomach to give you a feeling of fullness, thus resulting in eating less. From there, I have no idea how long the gel stays intact or precisely if and how it breaks down. Elimination might not be a problem for folks with colons, but our anatomy is of course very different. Theoretically,... [ more ]
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J-Pouch ForumsGeneral Discussion
Kegel question
GinLynGinLyn
liz11 no no no. stop gin. you are making things probably worse. Also muscles etc in that zone could be in strange state.. extra contracted, inflammed, etc.. take it easy. maybe sit on some ice packs even. patience my friend. you will get through this [ more ]
GinLyn Makes sense, Scott. Thanks. Gin [ more ]
Scott F Just guessing, but I'd go easy if things are swollen. You probably wouldn't do strength training on an injured limb... [ more ]
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J-Pouch ForumsGeneral Discussion
Ice Cube applied to Stoma....?
FM Former Member
Former Member Yeah, I did say I've read "to briefly apply an ice cube." I assumed any one reading would naturally wrap the ice cube in a cloth of some kind and not apply directly to the Stoma. I use this forum to expand my mind to all things Stoma and J pouch related and to share my experiences, I do have some common sense. As for a cold compress, by soaking a cloth in cold water and appling to the Stoma; I've more or less been doing this to relieve the discomfort of the sore skin and clean prior to... [ more ]
Jan Dollar First, keep in mind that these are both just folks blogging or whatever. They are not professionals. I have not seen this suggestion on any medical or ET nurse sites. Second, if you read the suggestions, neither one say to put ice directly on the stoma (it is wrapped in a towel, so it is more like a cold compress). Plus, they state to put it on for just a few seconds. If you wanted to try something similar, just use a cold wet washcloth. You should be OK with that. Let us know if it actually... [ more ]
Former Member Yes Liz, I'm using Imodium too. I'm surprised by the response in regard to the ice, I'm pleased I asked but still confused. Below are links to 2 website which suggest the use of ice cube on the Stoma: http://www.digestive-essentials.com/Ileostomy.html https://www.inspire.com/groups...hose-with-ileostomy/ [ more ]
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J-Pouch ForumsHelp! Need advice now!
Rapid Severe Dehydration
B BarbC
apa Hi Stan, I am new to the site and see this is an old post, but wondered how your wife is doing and if you have any suggestions of things that have helped her. I had j-pouch surgery 4 years ago after having UC for 7 years. I have had Chronic Pouchitis since June 2011. I have never met anyone else who has dealt with severe, rapid dehydration the way I have. I have been hospitalized multiple times for it with some of the same symptoms as your wife. They can never get a blood pressure read when... [ more ]
BarbC Liz, That blog is one hard read. That young lady has had to endure more than most of us would see in a lifetime. She is humorous, serious and positive through it all. When I started reading the part regarding her adrenal insufficiency, it reaffirmed what Jan posted. It is time to see an endocrinologist! Semi-Colon has not blogged since August. I hope that she is OK. Barb has been on Prednisone several times. It all started with a high dosage (40 mg) trying to combat the UC starting March... [ more ]
liz11 first I am so sorry your poor wife is going through this and I commend you for trying to find some answers. I don't recall adrenal insufficiency as being a simple blood test so I don't know what they tested in the ER. If I remember correctly adrenal insufficiency is tested with an outpatient hospital stay where they dose you up with steroids and check the results. I remember being checked for this on two different occasions and I passed once and I failed once. But more importantly, I recall... [ more ]
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J-Pouch ForumsGeneral Discussion
SORE hiney again!!!
GinLynGinLyn
GinLyn I've got some cream the Apotheek gave me which helps with the itch & burn, IF it stays on. Seems the poo is leaking in tiny bits, which basically defeats the cream! Multiple sitz baths are helping. Trying to take it easy... Gin [ more ]
skn69 My Poor Gin, So sorry...I know what progress-hope-deception feels like...Can you get Aloe Vera gel with local Lydocaine over there? It really helps a lot to cool the zone and reduce some of the painfulness... Yes, once things start being used they start to hurt so go back to your sitz baths and squirt bottles on the bottom whenever you go and keep the area cool and clean at all times... Have you tried an ice pack on your bottom? Keep up the walking and get better soon. hugs Sharon [ more ]
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J-Pouch ForumsK-Pouch Korner
K-pouch after suspected crohns due to fistula?
K Kelsie
Kelsie Katie, I sent you a PM. [ more ]
kaydbird Hi Kelsie, Dr Remzi did my k-pouch. AT the time, Fazio was still the head of the department so he was a little easier to get in to see than now But Remzi really is great, I'm very thankful he was my surgeon. I live near cleveland so the clinic was not a hard decision to make. I have not had any complications with the pouch itself. I have had little rocks in my pouch twice. First time, I actually had obstruction symptoms which is how they found them. the way my pouch is the opening to the... [ more ]
Kelsie Katie, may I ask who did your kpouch? Have you had any complications? What did you have done to try to heal the fistula? Who did you go to? Was the only reason your dx was changed she to the fistula? How bad was your fistula? Was it painful? Thank you so much for your response! [ more ]
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J-Pouch ForumsGeneral Discussion
Curious in regard to J pouch output...?
FM Former Member
Shainy strange, why takedown in 3-4 months? didn't you have surgery a while back just after me? [ more ]
Former Member Thank you for all the very knowledgable replies, a lot to consider, which I didn't. Yes, I use disposable bags. I change the bag 4 or 5 times per day & I also dispose of the contents down the toilet. I change the flange & bag every 3 or 4 days; I'm not most people. [ more ]
Pouch4Wf Your J-pouch must learn to act as a reservoir. The small intestine that now acts as a j-pouch is originally programmed to constantly contract. It must adapt. The amount of output may be the same, but the frequency is Highly variable after takedown. On another note, are your Ostomy bags disposable?? Most people empty their bag in the toilet and change their wafer and bag every 2-7 days. Dan [ more ]
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J-Pouch ForumsGeneral Discussion
Scopes
L LisaT
boy's mom I am trying to get my son off humira and methotextrate. He is also on antibiotics chronically at this time which I think is what helps along with strict diet. We have started to taper the humira by going longer between shots. With both remicade and humira you can test the level - and with my son he had such a high level -- the doctor agreed to let us space out the shots a little more which is moving towards tapering off I hope. Maybe you should get a second opinion from someone at a... [ more ]
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J-Pouch ForumsGeneral Discussion
Just some inspiration
TP Tommy pb
hfc I hope you do well. I completed Comrades 56 mile ultra in South Africa recently. I hope to do Beach to Battleship ironman in October [ more ]
mgmt10 Awesome! [ more ]
mt Well done Tommyb, what an inspiration. You surely don't let not having a large intestine an excuse for not doing what you love. Good luch in the IronMan. Let us know how it goes [ more ]
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J-Pouch ForumsHelp! Need advice now!
yeast question
R Rebe0505
Endi Also when I've had yeast infections in the past and tried treating them with OTC meds, it always got worse. I have to go get an anti fungal from my doctor who tells me EVERY time to quit using the OTC meds for yeast infections because they are the worst thing you can use for one. [ more ]
GinLyn When I get a yeast infection I have it always starts with an itch on the outside, around the labia. Then, if not treated, it goes inside, vaginally. A whitish discharge can be part of it, as can an ache-like pain. Sex is painful, feels like sandpaper. Some people say the discharge smells "fishy" although I have never noticed it. Unfortunately I am an expert at spotting them through having so many, so haven't had one get too bad in years, but when they are bad the itch and pain are constant. [ more ]
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J-Pouch ForumsGeneral Discussion
vsl#3 DS
M MAS
TE Marie Too add on to what Scott said I'd like to emphasize what I said about the medical studies. There are so few of us that what medical studies that have been done have not had the normal "control" group etc., as in "real studies" - they are closer to anecdotal ones. VSL#3DS is not the end all be all and without insurance I would look into alternatives - but not for long if they didn't help me maintain the current health that I currently have. I currently have to treat for pouchitis off and on... [ more ]
Scott F The level of scientific evidence for some probiotics is often not very strong. VSL does seem to prevent *some* pouchitis recurrences in reasonable studies. I haven't seen *any* real studies documenting the efficacy of S. Boulardi in preventing C. diff, so I wouldn't expect my doctor to necessarily recommend it, but I take it anyway. When you want to venture beyond solid medical science your doctor may not be enthusiastic or knowledgable. I don't think it's their job. If you've never had... [ more ]
MAS thank you everyone for the input on VSL#3. I will discuss this with my Dr. I wonder why she didn't recommend taking one. I spoke to my GI about this and he says I don't need one. I'm also curious about the one mentioned for C-diff wonder why that was never mentioned either. I had C-diff 3 times within 4 months. Frustrating to know that I could have taken something to prevent it. [ more ]
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J-Pouch ForumsGeneral Discussion
BM have increased HELP
M MAS
MAS pouch4wf: No I did have any issues when I had my bag. The BM usually don't come with urgency or incontinence (maybe 1 a week). I don't have cramping or blood. My guess is that this is normal and I need to let my body heal. This is a slow process. thanks for your input, I appreciate it [ more ]
Pouch4Wf MAS, are your BMs urgent?? Are you having any incontinence? Did you have any rectal symptoms like pain or urgency while you had an ostomy?? Do you have any blood with your BMs?? To have a very difficult first three months can absolutely be normal, but there is no reason not to be cautious at the same time. Recovery from take-down is a very broad spectrum of people doing very well right away, to other people needing several months for their bodies to adjust. At some point if there is no... [ more ]
MAS ks1905 my dr wants to wait to see what the culture shows, I don't understand myself. I have had this UTI since April 26th the next day after my 2nd surgery to create the pouch. I waited two months from the time my pouch was created. That was on the recommendation from my surgeon. I had no issues or problems with output prior to take down. I am so frustrated! [ more ]
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J-Pouch ForumsGeneral Discussion
gas and mucle sore
M MAS
Kathy A I am just 7 weeks post take-down and also have a lot of gas but I don't have any trouble expelling it. Some times I wish I did. lol It can be embarrassing to say the least. My surgeon told me it was normal to have more gas than with a normal colon. I remember that I also had a lot of gas for the first 2-3 months after my initial colectomy (2013) but it tapered off after a while. I am hopeful that this too will taper off. As for emptying the pouch, I read from a poster here that rocking back... [ more ]
Bebekspor I had a lot of pelvic floor pain for weeks, months after takedown. At first it hurt to even sit down. I don't know why. I had to sit on my side a bit to be comfortable. Katie [ more ]
Bebekspor The best way for me to release gas is to lie on my stomach. Not always the most convenient thing, however. Katie [ more ]
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J-Pouch ForumsHelp! Need advice now!
No Pain, No Bloat, No Nausea, But No Poop!
Kathy AKathy A
Kathy A Well here's the scoop, or should I say poop? lol It might have been just a rut in the rocky road to recovery, or a partial blockage that resolved independently but either way, it appears that things are getting back to normal. Now I need to re-adjust the Imodium dose and find what's right for now. I am so glad that I had this forum to go to before running off to the "system", especially on a weekend. Thanks again Jan. [ more ]
Kathy A Thanks again. Today I have had no BM's at all (it is now 9:30 pm local time) except a very tiny amount. Some gas but very little. I feel a little pressure in my abdomen but very mild. If I don't do anything over night or in the am, I think I will contact the Surgeon on-call and see if they think I can wait to see my surgeon next week. If I get pain in the meantime, I will go to ER. (I hate to do that because it will be a 6-8 hours waiting to be seen - one of the biggest problems with the... [ more ]
Jan Dollar Could be a stricture, but strictures are not intermittent. Still, it could be in early stages with spasms of the sphincters that restrict emptying. Imodium can be difficult to regulate. Some are more sensitive to it than others. This is why you are better off finding the dose that keeps you comfortable, and sticking with it as a daily dose. I focus more on frequency than stool consistency. I am loose most of the time, but no leaking. If I try to have stool that is too formed, it can be... [ more ]
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J-Pouch ForumsPouchitis
ct how are you doing
R Rebe0505
Rebe0505 good luck ct in i hope getting antibiotic working again.. i am on antibiotic now total three weeks ,second antibiotic(two weeks on one started another this week for two weeks)i have had the best week so far in a long time. got me to again realize how freakin good it could be if operation was totally successful!!! sigh! found out i do not have any yeast infection..doing my diet,taking antibiotic and enjoying every moment of these good days!!! i have not even counted bms.i think this is what... [ more ]
CTBarrister As I mentioned my Doctor scrapes the skin and confirms by looking at skin flakes under a microscope. It takes all of 30 seconds to do. My dermatologist was able to confirm the rash as yeast on the spot. You know it is gone when the skin looks healthy. As I said I have seen rashes come and go before I needed to go to the Doc. It was there in my armpit one day and gone a few days later after applying Zeabsorb. [ more ]
Rebe0505 thanks i hear you..keep updating however....what you do certainly helps me think about what to do or try.. ct i know you have yeast problems..thinking i may have had it or have it with itching in butt area and vaginal area outside but it is not continually..yours sounded pretty bad but how did you know you had it?some days i have it other i do not..does that sound possible?if i am more diligent with my witch hazel wipes sees to relieve it..but does a dr. examine you for it? how do you know... [ more ]
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J-Pouch ForumsGeneral Discussion
sibo fodmap diet pouchitis and all that other stuff
L liz11
TE Marie I you have a Vitamix you can make your own Almond flour, as needed out of raw almonds. This is true for any of the other's talked about. (Although you aren't doing sugar, you can make powdered sugar out of regular sugar for another example.) I was on a gluten free diet years ago and found this helpful because then you don't have leftover almond flour to use up. FYI - We also make our own peanut butter - don't know if that's on this diet or not. [ more ]
CTBarrister Has anyone tried sorghum flour? I see it in the gluten free section of the Supermarket and I read that it is gaining popularity in the USA, especially as an ingredient for gluten-free breads like banana or zucchini bread. I was thinking of retrying my banana bread recipe that calls for almond flour, this time using sorghum flour. Sorghum flour is about 1/3 the price of almond flour, and it is also cheaper than coconut flour, but I do not know what it adds to the quality of the bread except... [ more ]
winter wish 10 almonds (12g) is ok but 20 almonds (24g) is high on FODMAPS! not much would better eating Gluten free bread, here is a recipe for zucchini bread http://glutenfreegoddess.blogs.../zucchini-bread.html [ more ]
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J-Pouch ForumsGeneral Discussion
Remicade treatment for IBD?
K KeepFighting(Manny)
BlmBlp I just had a fairly severe reaction to remicade after my first infusion. One week after the infusion I developed a fever as high as 102 that comes and goes, headache, stiff neck, rash all over my body, every joint in my body aches, swollen hands and puffy face. Ended up in the ER for 14 hours. I was told joint pain and rash are fairly common but this was not just mild joint pain. Anyone else have such a severe reaction? [ more ]
wallflower I was getting infusions every 6 weeks for UC. The only side-effects I had were headaches, and fatigue after the infusion itself. Good luck! [ more ]
AllyKat I lost feeling in my arms and legs after the second infusion. It also made me very dizzy. Took 3 months to get out of my system. The two doses did get me into remission for 3 years. A small price to pay! ugh, never again, but lots of people have no problems with it. [ more ]
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J-Pouch ForumsGeneral Discussion
Excessive Tearing in One Eye
LesandiegoLesandiego
Lesandiego The symptoms disappear the next day, just as quickly as it appeared. But it happened once a week for the past 2 weeks. [ more ]
Jaypea Sounds like a blocked tear duct to me. You should have it seen to by a physician or nurse practitioner. You could try warm compresses to the inner corner of your eye 3 times a day. Might help clear the duct if that is what it is. [ more ]
Jan Dollar That's how my chronic dry eye started. Eventually both eyes were involved, with tearing, redness, swelling, pain. But, the left eye always is much worse than the right. Jan [ more ]
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J-Pouch ForumsPouchitis
Confused about Pouchitis symptoms
R Rick 1971
Rob McLorinan ❤️
gutless1993 ❤️
rrubio79 I had my last surgery total colectomy/j-pouch creation/temp ileo 6/14/2014 I haven,t had any real sleep yet, for I wake up about every two hours or so at night to several b`ms. I`m thinking I have pouchitis or something isn't right. my surgeon keeps telling me it will pass but I`m starting to worry , I have 10 to 20 b`ms a day, some diarrhea, also some blood on toilet paper. don`t have unusual smell but I do have some gas. well, I may have to get second opinion. [ more ]
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J-Pouch ForumsOstomy & Skin
3 Weeks Out From J Pouch Removed, Now Perm Ileo
P PoucherInTO
Holly HM So very glad to hear that you are doing well and the surgery was better this time. I got an abscess after my first surgery with temp over 104. I almost died from the infection, so that pushed my recovery time to about 9 weeks. Praying and hoping this one goes better. Please keep us posted about your continuing recovery. Homie [ more ]
LHetti I had my 15 year old jpouch removed this April. It's a big surgery and my barbie butt had to heal as well as that big midline incision. But it was ONE big surgery. For me, it was at least a 6 week recovery, but went much smoother than all the complications of my colectomy/jpouch surgery. I know there are hurdles anytime we face surgery, but my experience was better this time. Laura [ more ]
goldie I'm going to have my jpouch removed after 22 years due to Crohns...was the removal surgery more difficult then the creation of the jpouch? [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
What causes pouchitis?
H Halo52208
Halo52208 Thanks Elmer [ more ]
ElmerFudd Halo, there are a number of causes of pouchitis and a lot of studies done regarding causes / possible solutions for pouchitis. Pouchitis is inflammation in the pouch and can be caused by: Prolonged use of NSAIDs Bacterial / fungal overgrowth in the pouch PH imbalance in the pouch (which can affect the bacterial balance) Indeterminate UC / Crohn's disease (some people find they have ongoing inflammation more indicative of these two diagnoses) You won't know what is going to happen until you... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Top GI, GI surgeries Hospitals named
Minn MarkMinn Mark
ks1905 The worst part about running to the bathroom 20 times in the hospital was unplugging the electrical cord from the wall and wheeling the IV in the bathroom with you when you are in a rush to get there....I don't miss those days. I got stuck on the burn ward on the 9th floor for a few days waiting for a bed on the 14th floor to open up. They are downsizing the burn ward and adding more private rooms for the surgery patients; they had all ready began the construction when I was there in March. [ more ]
Pluot As far as I know both the 9th and 14th floors have wards for GI surgical patients. I don't think there is any particular place for medical GI patients... when I was there not for surgery they stuck me in adult oncology (a place where when they ask if you've had a bowel movement today, they are expecting you to say "no," not "yes, 20"). [ more ]
ks1905 AllyKat, I thought that Cornell has a floor for GI patients (like the 8th or 9th floor) but they are shared rooms, I've never been to Cornell for GI stays only for surgery and I highly recommend NYP Cornell for surgery besides the excellent surgeons there you get your own private room on the 14th floor. I always referred to my stays on the 14th floor as a vacation since the rooms are about the size of a hotel room and the view from the windows is excellent of the East River if you are... [ more ]
See all 21 replies...
J-Pouch ForumsPouchitis
yeast issues question
R Rebe0505
Rebe0505 thanks everyone was freakin out a bit about another antibiotic caused thing..but it seems controllable and i appreciate your feedback.. [ more ]
Rebe0505 jan i think mine is mild because it is not constant and appears to get better with my using witch hazel wipes..so i think i might try first the otc first.. [ more ]
Rebe0505 ct in answer to your question about probiotics..after writing site i dropped a line to dr. shen told him i had itching..he said to double up on my align(his probiotic by chose)see if that helps first..so he was not rushing off to drug yet..so i take away from this that perhaps the probiotics at least in his mind might be of some help..i plan on doubling up on align regularly now..ha its only money!!!! [ more ]
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
Surgery on Monday
K kennyboy
Mysticobra Best wishes to your husband Cathy. Hope everything turns out well. Richard [ more ]
kennyboy Well my husband had the surgery to remve his j pouch on Monday morning he was in theatre 7 hours and in recovery another 4 he has had two hard days but tonight he is slightly improved .hope this is a sign he has turned a corner ,just tought I would let you'll know ,regards cathy his wife [ more ]
kennyboy Thankyou for your replies I'm very grateful for any advise at this point regards kenny [ more ]
See all 5 replies...
J-Pouch ForumsPouchitis
Flagyl
J Jenny85
OKSTFAN Hi Jan, What's this C difficile I keep reading about? None of my doctors have ever talked about it or brought it up. I have had UC and/or Crohns for over 40 years. [ more ]
Jan Dollar I would suggest testing for C. difficile and CTM (cytomegalovirus). Neither one would improve with those antibiotics, except for some strains of C. diff would be suseptible to Flagyl. Barring that, you are left with ischemic pouchitis (from poor blood flow). Hopefully, it is not that! Jan [ more ]
Jenny85 Thank for responding everyone. I have been on cipro now for the past 3 days and haven't really seen that much improvement. I take probiotics daily and have been for many years. I really think this help with me not getting pouchitus. However, I'm not certain I have pouchitis...but what else can it be. My surgeon scoped me and said it was mild/moderate pouchitis so I guess it is. Any help would he greatly appreciated. [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Internal anal sore area
rachelravenrachelraven
rachelraven Has no one had any issue with Canasa suppositories causing anal irritation? Thought things were getting better, and it's still better than it was Sunday to Monday, but still have this left sided anal pain internally. Doesn't hurt to have a bowel movement. No discharge. Still hoping it's just a side effect of the Canasa. Thanks, if you've had Canasa issues, could you please respond? [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
noise
M MAS
Spooky I hate to be the bearer of bad news, but I'm 6.5 years post takedown, and some days my gut still produces considerable noise, and this is not always due to gas or eating certain foods. Other days it's extremely quiet. I've had friends and coworkers comment before, though we've all learned to just laugh it off. But, there are certain things you can do. If you do have excess gas that you feel is contributing to the noice, you can try probiotics (I've had my best results with Align), or foods... [ more ]
Jeff D I actually logged in just to post that exact question. Are there any strategies or methods to lower the frequency of the noises from our "new plumbing"? I can't put a finger on which foods cause it, but some days it will last for most of the day. I know it is most likely impossible to completely eliminate all noises, but any advice would be appreciated for my peace of mind. In a quiet classroom, meeting potential partners and it's a quiet atmosphere...as many of you have experienced, it stinks. [ more ]
GinLyn When I had my first takedown my children were quite small and a favourite activity was to sneak into our bed early in the morning and listen to Mummy's tummy growl... Gin [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
self dilate inlet
pouchingtonpouchington
pouchington ok thanks jan. so my doc scheduled me in for what hes calling a dilator fitting. what can this mean? i already have my normal outlet dilator. does it sound like he found and inlet stricture from the defography? im getting a bit excited... [ more ]
Jan Dollar Why is your surgeon a butcher? Pouch inlet stricture is not generally due to surgeon error. It is mostly due to inflammation. Jan [ more ]
pouchington I Hate My Surgeon. Butcher... [ more ]
See all 4 replies...
J-Pouch ForumsPouchitis
xifaxin question,ct,alleykat ,boys mom and anyone else
R Rebe0505
AllyKat I'm on 550 twice a day. The Augmentum seemed to get it to work again. I also take a mid day probiotic be it 24 hour yogurt, kefir, VSL, or whatever probiotic I have in the house. And canassa at night. Also I just experimented taking pepto bismol in the am and that has really helped. And I take gummy fiber. Lots of inflamatory vitamins like vit d! turmeric! fish oil, etc I was once on Xifaxan for over 2 years when I developed trush and my GI had me stop it. Then I got bad pouchitis again and... [ more ]
Rebe0505 thanks .. [ more ]
liz11 im on 550 twice a day when im on it [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Hernia
A abillusmc
Lesandiego I asked my surgeon the following... How many hernia operations? How many operations of patients with J-pouch? How many could not be performed laparoscopic? How many did you determine could not be repaired after open sugery? My surgeon was careful enough to schedule my lapro surgery with another surgeon, so that she had an extra set of eyes to assist. [ more ]
abillusmc How do you select a proper surgeon What is the % pf success. If you do not wear hernia belt does it enlarge. Does this then prevent exercise to resuce ab fat built up prior to surgery [ more ]
JenniferG I've had same hernia over stoma site repaired twice now (with mesh) and it's back again! don't have any idea how to fix it but Im not going to go in for surgery once a year. [ more ]
See all 6 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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