J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsWomen's Health & Pregnancy
skn69 and Jan thank you both for your replies. I'm glad that I'm not crazy for wanting another baby. I will be talking with my obgyn and hematologist to see what they think as well. [ more ]
No, you are not crazy! Personally, I don't think the risk of worsening your osteopenia with Lovenox is high enough to either avoid pregnancy or the anticoagulant. Talk this over with your OB/GYN (which I assume is high risk, based on your history). I think there is a way to carry this off AND retain your sanity! Jan [ more ]
Twhit, No, you are not crazy...just a mother. I cannot say anything about the rest but I can say that there are also alternative, homeopathic methods to help with the osteopenia that require no meds...probably less effecive but they do help. There have been a lot of studies on bone loss and exercise...what they have shown is that weight bearing exercises help build bone (lifting light weights, climbing stars while holding weight in your hands or in a back pack or weight belt), so does... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Floradix liquid iron works very well without any side effects..! I get the gluten free one and I also squeeze fresh orange in the serving for added vitamin C(for best absorption). My levels went up in 4 weeks!!! This stuff is the BEST! Good luck [ more ]
I did really well with Floradix. You can find it in most health food stores. It's a liquid supplement though so with the nausea may be a little hard to get down (I don't mind the taste at all). It was the only thing that would get my levels up. [ more ]
I take ferrous gluconate because my hemotologist said that was the easiest form of iron to take. 28 mg on an empty stomach, taken with Vit C (I do the chewable Vit C). No issues, but I'm not pregnant with morning sickness. Best wishes! Laura [ more ]
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J-Pouch ForumsGeneral Discussion
Geesh, I hope that I can get back into exercising again someday soon! With my butt pain and irritation, I can't even imagine it. I loved biking and hope to be able to ride again next year. I can't even jump around with my toddler because it hurts to jump. Katie [ more ]
I have had my takedown surgery over 13 years ago. I am 69 years old. I weigh about 154 pounds and 5 feet and 11 inches. I work out 4 or 5 times a week. I lift weights every other day. When I work on my abdominal muscles, I spend about twenty minutes. I don't experience no pain. Exercise helps me get rid of gas and speeds up my gi track a little bit. Also it helps me deal with stress in my life. [ more ]
Micheladelfina - 100 lb resistance on Russian twists! I feel like throwing up with the thought! Good on you. I'm at 30 sec planks! (And even with that I find it hurts quite a bit where the stoma had been) [ more ]
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J-Pouch ForumsGeneral Discussion
I had 2 skin tags and hemorrhoids removed during two dilation procedures when I was put under general anesthesia (on 2 different occasions) since my takedown. Both procedures went very well. I did have a lot of pain for the first few days with bowel movements and I took baths 3-4 times per day for the first week after each procedure, but I am very glad that I had everything removed and it is in good shape now. My procedures have all been done in Madison, WI at UW-Madison by Dr. Harms. He is... [ more ]
Dr Garza performed surgery on me and removed multiple skin tags and I have had nothing but problems. It has been several months and the area still looks like a disaster, not to mention multiple new problems that have popped up. I am wondering how you have healed since your surgery. I think the area looked better before the surgery and totally regret doing it. [ more ]
Thanks Minnie, I am thinking of Dr. garza and Beart to do my surgery. He feels I don't need a j pouch but an a colectomy and lileorectal anastomosis. So it is god to hear your comments about garza and beart. You mention tough recovery from j pouch. Did Garza do your j pouch? And would you recommend her? Thank you and continued good healing to you! [ more ]
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J-Pouch ForumsGeneral Discussion
My scar is super light now, because most of it is 23 years old... Under my belly button, it's a wee bit darker, because I was cut there two more times (C-section and ovarian cyst removal). Mine was open surgery, too, so goes from under my sternum to down into my, well, pubic area. It's big. My ileostomy scar is on my right side, and barely noticeable. I've totally rocked a bikini with my scars. I just don't care! It's part of me! I'm 43, and I wore one in Puerto Rico last year. I mean, why not? [ more ]
Yup, mine sticks out too. And more on the left side than the right so I'm lopsided as well! It's not fat (I'm a size 6) and no matter what I do it never goes away. It's as if all my organs have shifted inside and something is right there pushing out on me. I'm 4 years since the surgeries. I exercise daily and I consider myself in pretty decent shape but my belly is no longer flat. I'm 46 years old so my bikini days are over anyway! *sigh* I suppose it's a small price to pay to be healthy again! [ more ]
I'll add that I have worn a bikini since surgery, several times. I've never had any comments, negative or otherwise. In addition to the vertical scar and stoma scar I described above, I also have 2 indentations from the drains on the lower left side, which kind of look like little bullet holes. That's the best way to describe them. *LOL* One is quite visible, though the other has almost completely faded. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Thank you very much! I appreciate the feedback. Katie [ more ]
I'm sorry for all the troubles! I agree with what's been said above- fistulas come because of disease, surgery complications, childbirth and to just wreak havoc for women and surgeons! You asked on the other page about Crohn's diagnosis...my diagnosis was changed because I had Crohn's like symptoms: fistulas, stricturing, and Crohn's of the cuff. They stopped calling it cuffitis because my rectal cuff had so much mucosal lining eaten away it was just beyond cuffitis in nature. Because of the... [ more ]
I posted a question on the 'rv fistula question' thread, but I should post it here too. My gynecologist found a 2mm hole in my perineal tissue upon a pelvic exam for the yeast infection issue. She directed me to my colorectal surgeon. Spoke to him, he said it could be possible Crohns (which I don't think I have), and that it shouldn't be from the surgery because it 'went perfectly'. He is going to see me on Sept 8th to look at it. So far I just have gas passing through it once every few... [ more ]
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J-Pouch ForumsOstomy & Skin
Welcome home! Keep us posted on your recovery! [ more ]
Thank you so much for your replies - it really helps to hear from people who know! I'm home now! My bladder finally woke up after 10 days and the pain is more bearable but it still hurts. It's good to hear that it stops eventually. It sure is nice to be hone - that was brutal - but completely worth it. . [ more ]
Clicky, I hope you're glad to be on this side of the surgery. Yes, the recovery is rough, but by week 4 I was feeling so much better. I was on 4 oral pain medications and that seemed to handle the pain for those first four weeks. Are you taking a lot for the pain? I even had a lidocaine patch to stick to my bottom to even take the edge off the pain that way. My stitches just dissolved, but there was a knot or something that really bothered me in the process. It too dissolved as the weeks... [ more ]
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J-Pouch ForumsGeneral Discussion
Our GI tests my daughters sodium often. She said it is common for people who have their colons removed to have low sodium. She just has a urine test done and I make her salt tablets out of empty gelatin capsules. Her sodium was really low right after surgery and it made her feel bad. The salt pills really help.you could ask your doc about it. [ more ]
Lots of folks here have low iron. Low sodium is a different issue, and I don't think it's connected to UC. You might need a better doctor to get to the bottom of that. [ more ]
not that i have heard of.. [ more ]
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J-Pouch ForumsGeneral Discussion
thanks! yes i take 2 vsl#3 a day..i just had surgery for skin cancer as well [ more ]
I too have been at my wits end with pouchitis. See my signature, I've been on everything. This last episode was 10 months, nothing was working. I saw my surgeon to have my pouch removed and he told he to try augmentum. In one day I was totally better. I took it for 3 weeks but got a fungal infection so I switched back to Xifaxan which had stopped working but now it's working again. I'm afraid not be be on anything. I might not even need it but don't want to take a chance. I stopped... [ more ]
Have you tried Probiotics for your pouchitis? I'm sure you have but just a thought. VSL #3 prescription strength seems to be highly recommended, and I would try more Greek yogurt and maybe even giving up carbs if that is contributing to pouchitis before going on Remicade. I was on Remicade 5 years trying to avoid this surgery and 10 years on Azathioprine and have had over 35 skin cancers, most likely due to weakened immune system from both of those drugs. My dermatologist wanted me off it,... [ more ]
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J-Pouch ForumsGeneral Discussion
Sometimes, and more often than not, it's immediately. I was diagnosed with ulcerative colitis and had my jpouch in 2008...I've had pouchitis intermittently over the years...but have always had multiple bowel movements a day, even with taking Imodium and bentyl [ more ]
I would say it likely depends on how long ago your surgery was. Initially, as the system learns its new function, urgency would happen quickly, as the small intestine has not yet been trained to absorb some of the water, etc. that the colon used to do. As the years have gone on, for the most part I average around 4-6 hours after eating; the only times this varies are with certain foods (spicy things, very rich foods, normally which I try to avoid). If you are in a flare, that could... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsPouchitis
Oh yes I recall good old Imuran. It was my last resort medication before surgery done. I was somewhat glad it did not work at all, because this drug scares me . Thanks again for the info............x [ more ]
Not necessarily. My last scope showed some inflammation there. However it is possible. [ more ]
Doesn't inflammation of rectal cuff cause bleeding? [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks for the responses. I never thought I would be happy that I was getting scoped...hopefully is just pouchitis. Alison [ more ]
Pouchitis can make me feel that way. Flagyl alone didn't work for me, either. If it looks like pouchitis on the scope then there are other antibiotics worth trying. [ more ]
I am dealing with the same analysis and tailbone pain. I am having an MRI on Wednesday. Your GI may recommend. this also. You may have cuffitis/pouchitis going on so scope should help diagnose. I have had both for a long time and trying to rule out infection in spinal area. [ more ]
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J-Pouch ForumsGeneral Discussion
Greek yogurt, no sugar applesauce, white bread, pasta, rice, cottage cheese, scrambled eggs, mashed potatoes, grilled cheese, turkey and chicken, potato chips, pretzels, crackers, tuna, any kind of non-spicy soup without fiber, creamy peanut butter. I did very low residue like that for probably a week and then slowly introduced more low-ish fiber foods like well cooked veggies, fruits without skin/seeds, red meat, etc. I'm a year out and still slowly introducing higher fiber foods. It took... [ more ]
Immediately afterward, make sure to chew things well and try to stay toward relatively bland foods while you are healing. Ritz crackers and peanut butter got me through the first week! Pasta is good too, just be careful of tomato sauce, as it's got a lot of acid in it and that will not be pretty on your newly minted bum. Not sure what your doc's advice was on meds; my surgeon preferred that I got through the first month or so without lomotil or anything just so my body could get used to its... [ more ]
Hi Dawn, If you have a hand held blender you can do a lot and eat a lot of different things. Start out with bland foods like mashed potatoes, eggs (scrambled or hard boiled), simple pasta without spicey sauces, toast, applesauce, rice, bananas and some canned soups, especially if you are emptying your pouch a lot...the soups have a lot of sodium in them so that you dehydrate less...drink lots of fluids too. Water and juices watered down a bit. Always start out with small quantites when... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Yes I had a abscess that did not show on any tests, blood work was also fine. I was in tremendous pain. It was found during an exploratory. [ more ]
I know that I wondered if I had an abscess early on following the j pouch procedure because of the anal pain. It was ruled out as were even hemorrhoids. It eventually eased. I purchased a good quality hemorrhoid donut pillow that helped me to sit. Also the often prescribed tub soaks helped alot. I predict this will ease for you in time. I remember it being so frustrating in those first three/four months sometimes. I noticed a good change at 3 months and another qualitative change at 4... [ more ]
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J-Pouch ForumsGeneral Discussion
Pain on the right could be gall bladder. [ more ]
Pain in left side could be pancreatitis. Usually, intermittent and not necessarily during bowel movements. [ more ]
I'm having pain on my right side. My surgeon said that it could be that my pouch is tilted to that side. I'm wondering if it's partial obstruction, or more pouchitis. [ more ]
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J-Pouch ForumsGeneral Discussion
Squirt bottle works best for me! I also carry a travel pack of baby wipes just in case there's no toilet paper or if for some reason I can't use the squirt bottle. At home I've had a Bemis and a Bio Bidet and they were both awesome (the Bemis didn't break, but I moved and my new toilet was a different shape). Every bidet says it has a million different bells and whistles but all that matters to me is that it heats the water and you can adjust the pressure Good luck! [ more ]
I have one of these hidden in my downstairs half bath in case I'm too lazy to go upstairs to my bidet. I also take one with me every time I leave home over night or for vacations. http://www.amazon.com/Blue-Bid...words=portable+bidet There are several other ones on Amazon and Diabetes.com too. I hope your return to work goes well [ more ]
At work you can use a squirt bottle. Just fill it with warm water and take it into the stall with you. They are small and easily portable. [ more ]
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J-Pouch ForumsGeneral Discussion
I used the filler paste and powder too, without success. I persevered with my Stoma nurse recommendation even though endured a great deal of pain & discomfort due to my burning skin, I even posted on here asking for help. I too was applying the powder substance which claimed to heal the skin but it was so difficult to apply just the right amount to not prevent the Stoma appliance from sticking to my skin. I was using a Hollister one peice appliance which would constantly leak within... [ more ]
Thank you Rachel, I did experience the routine shrinkage with my first stoma also, however, with this second, had that interim fear of it closing up or something primarily due to it being so flush with the skin surface etc. Hopefully it has now shrunk to its normal level as I endure this next couple of months prior to Take Down. John [ more ]
Strange, Thanks so much for the reply and comprehensive information. I am currently using the Sensura one piece (15521) appliance and although I requested a few samples of another style (convex) to try, my stomach is flat and I have resorted to staying with the 15521. My routine right now is to change the appliance every 3 to 4 days to help keep the area clean and protected. To prep the area, I routinely apply a light coating of the Micro-Guard Powder, dust it off then spray heavily with... [ more ]
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J-Pouch ForumsPouchitis
Been seeing a fodmap dietician for the last six months having some great results. Less bathroom visits noise,cramping and spasms have reduced also not getting up at night was up early every hour and half so am happy about that. My last visit the dietician recommended an app for my phone so I can check up when shopping comes also with some recipes it's called THE MONASH university LOW fodmap Diet it recommends what not to eat and what is ok hope this help [ more ]
just f.y.i.checked what i could find on fodmap which is designed i think for ibs patients and my own which is s,c.d diet and there are clearly things eliminated from s.c.d. completely that seem more liberal on fodmap..s.c.d has been helpful a variety of diseases like colitis,chrohns,diverticlitis and host of others..its based on eliminating foods that for a better term feed bad bacteria...some folks on site are believed to have pouchitis/s.i.b.o and so the s.c.d. diet eliminates all starchy... [ more ]
Thanks to each of you for the input and support. I really appreciate it!! [ more ]
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J-Pouch ForumsHelp! Need advice now!
You may want to check out the ileostomy and k-pouch forums. You may find all your answers there. Jan [ more ]
In the case of an iloestomy or a KPouch that would be made after a Jpouch failure, on which factors will be based the decision to remove or not the old JPouch? Other than the surgical risks, which problems should we worry about? I would be happy to read any experience on both situations. [ more ]
Thank you for your quick answer. I will come back later to you. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
Ha - Barbie butt. It took me a while (story of my life). I started riding a bike at about the third month post surgery. I didn't try it sooner but likely could of. [ more ]
I can't say that I've been back on a bike, but I can't imagine it hurting at all. I have zero pain/discomfort in my barbie butt since it healed. I used to not be able to sit comfortably because I had RV fistulas and Crohn's of the cuff (they stop calling it cuffitis in my case). Now I sit on anything and never think twice! [ more ]
Thank you all for your replies so far! The surgery couldn't come soon enough, but I know it will be November before having it, as my surgeon and GI both want me as healthy as possible before having it. To those that have the barbie butt, have any of you been able to ride a bike. I am an avid cyclist and road bike often. Once this area heals, how does it feel riding a bike? Thanks again for all the feedback, thus far! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Good luck for the surgery! Sharon [ more ]
I started having obstruction about 1 year after my final surgery. I was doing perfect until then. The waves of pain are much like labor pains. The worse labor pains ever. They found out my pouch was twisting. I was scheduled to have surgery to attach the pouch down so it can't twist. In about 3 weeks.This week I had another obstruction, the worst one ever. Back n the hosp. Looks like I am having surgery in two day now. Happy to hear this has worked for others, sorry for those who who it... [ more ]
Mine felt like a charlie horse on meth. Only way to describe it. Felt like my whole pouch was trying to rip off my abdomen. I took lomotil when I had dumping issues to slow my gut down and the food froze or something in the bowel. I think the bowel wasn't working so it was just a horrific experience. [ more ]
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J-Pouch ForumsGeneral Discussion
Healingwell.com has a UC forum. [ more ]
Are there specific symptoms you are looking to address? There are plenty of members here that have colitis and can help with addressing symptoms, challenges, etc. You can also look on the website for the Crohn's & Colitis Foundation at ccfa.org to check on support groups that may be in your area. [ more ]
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J-Pouch ForumsGeneral Discussion
Sure, I use the protein powder from Arbonne (it comes in chocolate and vanilla). It's a little on the pricey side, but I haven't found anything that matches its nutritional profile and uses vegan based protein, which eliminates issues with dairy or soy that I tend to have. I throw it in my vitamix every day with some coconut almond milk and whatever fruits or veggies I'm craving that particular day. I find that the vanilla lets you experiment with flavor combinations a bit more than the... [ more ]
Michele can you give me the name of the high calorie protein drink you use thanks Grace [ more ]
Thank you. Hope that site can help me [ more ]
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J-Pouch ForumsGeneral Discussion
Pure gassiness is more often either dietary (beans, broccoli, swallowing air) or a sign of SIBO (small intestinal bacterial overgrowth). If it's not bothering you much, you might try traditional ways of managing gassiness before medicalizing it. Everybody has gas, but it's tougher for J-pouchers because most of us can't safely release it when off the toilet. [ more ]
Hi all. I am almost 3 months post-takedown and wasn't thinking anything was technically wrong with me until I read this post. I have been having tons of gas for the last couple months, but figured it was just my "new normal". I'm not going very frequently (maybe 5-8 times per day) and am eating normally, though still somewhat low-residue. Aside from butt burn I only have a little gas pain that mainly kicks in later in the day. So, nothing that seems alarming, but the gas is an inconvenience... [ more ]
Different things can cause strictures. Here's a paragraph from a 2010 Bo Shen paper that talks about strictures (I removed the reference numbers for clarity): So he's basically saying that strictures can generally be caused by insufficient blood supply after surgery, NSAIDs, and Crohn's Disease. [ more ]
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J-Pouch ForumsGeneral Discussion
Mrskpollard, what issues are you having with your j-pouch? I can definitely relate to you on a few things being that I was 19 weeks pregnant when I had my emergency subtotal colectomy. Dealing with my first pregnancy and then major surgery and a ileostomy on top of that was crazy. My daughter just turned one and I am still amazed at how she thrived despite everything I went through. She was in the NICU for a week for hypoglycemia which may have been due to me taking steroids for my UC, but... [ more ]
Hi Kristina I hope you are feeling better. Yes the enemas are for pain and healing Ask your gastro. What is good for me might not be good for you let me know how you make out Feel better Grace [ more ]
Have you seen your Dr. for the fissures? I had them and used nitroglycerine cream and bella donna suppositories. I was also told to try to keep movements on the loose side to avoid to much pressure when going. Hope this helps. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
J-Pouch ForumsHelp! Need advice now!
Glad you got it sorted out! Just something to add, in case they didn't tell you: if you have a loop ileostomy, there are actually two openings, one in the middle where most of the stool is evacuated, and one near the bottom, on the underside. The lower opening is mucousal but stool can and does sometimes move through. It can be frightening if this isn't properly explained to you. I know it was for me. I had both an end and a loop. I had the end first, which has only one opening. Then I had a... [ more ]
Thanks a lot for your answer anyways, JillM. Better late than never! [ more ]
Sorry I didn't see this earlier I could have saved you a trip. I have a small pin hole in my skin next to my stoma, right where your picture shows, where stool comes out. Have had it for 13 years. Dr said if it isn't bothering me he saw no need to bother with it. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I had same problem with lots of nighttime trips. Definitely do better if use Metamucil after each meal. Sometimes I would take additional dose around 9 PM, with bit of dessert, and then stay up 2-3 hours until I can work up succesful, large BM. Then I could sleep 3 hours. Currently on Flagyl so nights are great! Going off it in 2 days so hoping good control continues. I also take 2 Immodium AD before bed. LJZ Good luck [ more ]
Check with your dr first. I had my takedown in April and my dr doesn't want me taking Imodium or Lomotil yet. I'm not sure why - he just says it messes up the regular adaptation my body is going thru; however lots of people seem to take these right after takedown. [ more ]
I take two lomotil right before bed time. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsHelp! Need advice now!
What about pain issues 6 weeks out? I was doing great weeks 3-4 - walking every day - caring for my children with just occasional rectal pain... Then it ballooned to much more intense throbbing - especially bad in am- moderate in day...it was a discouraging step back - I just don't understand what's causing it ..., [ more ]
I am almost 6 months out and have been mostly continent since my takedown, even though I have had at times very loose, almost diarrhea and was totally able to hold it. The only times I've not been continent is when I took medications with codeine, or other relaxants, which put you to sleep and relax the anal muscles too. Also, I had a lot of mucous, then more stool coming out during my time with loop ileostomy. They assured me it didn't mean my pouch would be leaking, and it had been tested... [ more ]
I've passed mucous as many as 13 times in a day, but usually about half that many times. [ more ]
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J-Pouch ForumsHelp! Need advice now!
thanks sonja went to dr today all good w blockage thank you had surgery to on sinus tract [ more ]
Not trying to freak you out or anything. But don't put off going to the doctor if your still in illio stage (like you still have a bag). I speak from experience! I did. I put it off for days! I just kept eating and eating hoping that it would unblock and be better. I was so freaked out about the possibility of having the bag forever (I was 20). By the time I finally gave in and went to the hospital I had days worth of back up. So as soon as they hooked me up to the IV I hosed the whole ER... [ more ]
If you get to the point where you can not hold down your fluid intake, thus vomiting, seek professional medical attention immediately, otherwise you may dehydrate. Dehydration to such an extent & during such circumstances can creep up on you, which may and will lead to Kidney failure. I speak from experience. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
@Scott F Thanks for explaining Primary Polydipsia in laymans terms for me. I have at one point forced myself to stop drinking but the thirst becomes unbearable and my mouth becomes dry to the point I can barely even talk. I'm not on any medication at this stage, except for some probiotics and supplements. I've had three blood tests regarding this issue and one of them was for Diabetes, the other was for some sort of Thyroid problem? And something else as well, I'm not usually good with these... [ more ]
Speaking of alcohol, yes. For me, too. Every alcoholic beverage I consume gets 8 oz of water along with it. [ more ]
It seems like an inordinate amount of fluid to me...if I am calculating it correctly. Six to eight litres a day is 24 to 32 cups per day - cups not ounces- as compared to, for example, rachelravin's 5 cups per day. Since you have been doing it for so long and you've been checked out by your physician, I guess that would rule out issues (diabetes?) etc. I don't know kobe, it just seems like an awful lot. No suggestions though, sorry. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I've never taken the meds. So I'm no help there. But I too now have kidney issues that they recently told me about. Apparently they have been watching them for a while. Now they want to check them every 6 months. Because I now get bouts of horrific lower back pain. I've been curious if others are later having kidney issues? [ more ]
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J-Pouch ForumsHelp! Need advice now!
I've also had this problem since I first had my j-pouch almost 20 years ago. I use a strategy similar to that of TE Marie's, but instead of a bidet (which I don't have and honestly don't feel comfortable using), I jump in the shower and spray warm water up my butt for a few mins. This works well for me but as you can imagine it would be difficult to do in places where you don't have access to a shower. [ more ]
StephenS, Are they going to be able to fix the prolapse by tacking up the j-pouch or something like that in an operation? I think I read somewhere that someone had this done for a large pouch that was doing something similar. I hope it can be fixed and without making too large of an incision.... [ more ]
My husband has the same problem... he feels like has to go all the time but can't go. He also loses bowl control at night. He recently had a scope done by Dr. Chen at the Cleveland Clinic who found a prolapse in his j-pouch blocking 80% of his opening. My husband had had a scope not too long before but the doctor wasn't an expert with pouches and didn't identify the prolapse. Dr. Chen doctor put him on a suppository but it hasn't shown any improvement. I'd recommend a scope by a doctor who... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
You can PM someone by clicking on their name and selecting "Invite <name> to a Private Topic." You can generally navigate to the PM area by clicking on the "Go" tab near the top left of the window and selecting "Personal Zone." You can adjust your account settings to send you an email when you get a PM, or there will also be a flashing (but small) indicator when you log in. We replied at the same time - ccanepa's method works fine, too. [ more ]
You go to the folder in the upper left that says "new" and then you can do a private message! [ more ]
How do I do that, the private message? [ more ]
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J-Pouch ForumsPouchitis
Take a look at this post. Some of us are going to try the oregano oil for different reasons. I hope we get updates from the other j-pouchers who posted. It talks about a protocol as well. http://j-pouch.org/eve/forums/...517080276#6517080276 Cayseebee, I have not tried acupuncture. I would like to. Vanderbilt has an acupuncture center and they work with your doctor's. From what I hear, it's been very successful. [ more ]
thinking that the oregano oil is possibly the find here..but i want to find out more about how much to take,what kind and can one take it indefinitely..like i have said in other post it still can be advantageous for us to get break from antibiotics.. hearing more and more of its antibiotic properties being quite real and effective..watching my internet friend in ohio carefully.. reason i have not started it because i had to get myself in balance again after using just diet to control... [ more ]
This is all very interesting to me - definitely going to check it out. I will say, not that it's "holistic" but still not super traditional - I'm pretty big on chiropractic. So many other issues have been cleared up as a result (headaches, heart palpitations, irregular cycle). I have scoliosis so it's tricky, and I still have pouch problems but that could be because of the curvature, because of my neck's forward posture, or most likely more my insistence on eating so much candy. Has anyone... [ more ]
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J-Pouch ForumsK-Pouch Korner
Thank you so much for your helpful response. I am in touch with Dr. Schiller in California who does the BCIR procedure and will be sending him the required medical records soon and am hopeful that we might be able to do something. Can you possibly offer any comments regrading the information regarding the differences, pros and cons, between the K-Pouch and the BCIR? Thanks again. [ more ]
Hi Lisa, I am so sorry for everything that you have been going through...it sounds like a really a rough ride for you. Did they tell you why you had toxic mega colon? UC or Crohns or something else? The fact that they left you with some colon is (maybe) a positive sign that there was no crohns disease which is usually (but not always) a deal breaker for a k pouch. The k pouch is one of 2 variations on a continent pouch (k pouch and BCIR)...and the J pouch is a pouch that uses the natural... [ more ]
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J-Pouch ForumsGeneral Discussion
My brother had uc a lot longer than I did, and was also on prednisone much longer than I was. He just had his second hip replaced in May; the prednisone ate his hips. [ more ]
I am so happy to hear that you feel great after your knee replacements. I am starting week four. I still have some swelling that I ice a lot. I am in pt three times a week and it does hurt, but I am doing it! Thanks for the advice and encouragement. I am looking forward to pain free days. [ more ]
Lab, I had both my knees replaced in June 2009 (avascular necrosis). Now I feel great. No pain or swelling. Full range of motion and complete confidence in movements (joint not bowel!). The only thing I have is a little stiffness, but it goes away after a little warm-up. But >>> You've got to do your PT. It's going to hurt. A lot. But grind through it. Every rep and exercise that is required. Further, when the therapist manipulates your knee ... forcing it in certain directions --... [ more ]
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J-Pouch ForumsPouchitis
Take 550 2 a day. After a course of Augmentum it started working again! I couldn't be happier! [ more ]
Make sure to check the pill strength. Xifaxan comes in 200 mg and 550 mg tablets. Most folks here seem to be using the 550 mg tabs twice a day. [ more ]
Xifaxin comes in 550 mg tablets and I take 2 per day. [ more ]
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J-Pouch ForumsGeneral Discussion
I did not receive my UC diagnosis until I was 40 but had it for years before then. I told myself it was colitis, like IBS. I didn't have it as a child but was abused by my mother as a child until I was able to move in with my father at age 13. In the 60-70's the mother always got the child until the child was old enough to tell a judge where they wanted to live. Fast forward, I was receiving massages every other week for my fibromyalgia and I had the most horrible UC accident ever coming... [ more ]
It certainly does aggravate it! I cannot attribute family stife to the origin of my problems but it definitely made things much worse. I met a lot of young people at the time, in group therapy at the Sick kids hosptial in Toronto, that were suffering from various mainifestations of IBD...we were a small group with 2 therapists and about a dzn teens...none of us were "enjoying our teens to the fullest" but suffering from both family conflicts & IBD. My only question is if it was the IBD... [ more ]
I did not develop UC until my mid 40s. Therefore, it was not my childhood family stress, but my relationship with my husband who was on meth and being a Landlord that caused insurmountable stress for me. Our ugly divorce threw me over the edge during my last flare. I am not saying stress "causes" auto immune diseases, but it certainly exacerbates the flare. [ more ]
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J-Pouch ForumsPouchitis
asked dr shen about both sulfa and prilosec ..for what its worth here is his answer... "both agents have not been studied.would be careful using prilosec for fear of c-diff...sulfa has been empirically used with both gut and joint symptom.." [ more ]
No side effects for me, other than some indirect ones: 1. If I miss my Prilosec, my body creates more acid and I get bad heartburn. FYI - if you are on PPI's long-term and want to stop, substitute an acid reducer like Xantac and then gradually wean off of it. 2. It has been shown that long-term use of PPI's (about 3 years) can reduce B-12 absorption. Checking B-12 levels after several years is a good idea 3. Sulfasalazine can affect Potassium levels and I have to get my levels checked every... [ more ]
Thanks for posting this. I would love to hear if anyone else has had experience with these and also what are the side effects compared with antibiotics.. That would be very helpful. [ more ]
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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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