J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsPouchitis
Thanks! These are good guidelines. I know many meds are good months or even years past their expiry date (i.e. Tylenol, imodium, etc), but I was aware that certain antibiotics had shorter shelf lives so I wasn't sure if flagyl was in that group. But good news. No reason to pitch anything out prematurely. [ more ]
As long as it is stored correctly, I would expect it to be good for at least a decade. The "use by" dates are fairly arbitrary dates where the drug company guarantees the potency and safety. Tetracycline and liquid antibiotics are an exception. If it is a critical or life-and-death thing, it might matter (like with sublingual nitroglycerine tablets for chest pain). But a slight decrease in potency for most drugs should not matter much. If you are using old stock of antibiotics and do not get... [ more ]
Good question, according to this comprehensive article on flagyl, shelf life is 2 years from date of manufacture, if product is stored at below 25 degrees Celsius and kept out of the light. http://www.medsafe.govt.nz/pro...idazolebaxterinf.pdf You would need to know time lag between when the product was manufactured and when it was shipped to the pharmacy for your consumption. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Give up dairy. Seriously. I was in denial about it for a long time because I didn't want to give it up, but human babies are just not able to process cow's milk (through your milk) very well and it's a huge problem for them. It's only for a limited time that you need to do this, but be sure to get all dairy out of your system. I found I had to hydrate with juice or gatorade when BFing because I have a tendency to dehydrate anyway with the pouch, and water was just not enough. My supply would... [ more ]
I had great success nursing my son with my pouch. I had to stop when he was a little over 5 months, because I needed to get back on some medication. But my supply was always fine. My kids were both intolerant to dairy protein. My daughter (pre-pouch) was much worse and couldn't handle it at all. Around 10 weeks is when we finally realized it was eating away at her poor little digestive tract and we switched to formula to get her healed as fast as possible. I was able to just cut down the... [ more ]
From my own experience and those of my friends, each baby is an individual, just as we grownups are. One baby may not be bothered by anything and another gets tummy troubles from practically anything. Even if you think you are eating a bland diet, there can be a particular ingredient that passes something through the breast milk, causing GI distress for your daughter. Common offenders are milk, nuts, chocolate, and caffeine. I had one friend who's son got gassy when she ate cucumbers. Go... [ more ]
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J-Pouch ForumsGeneral Discussion
Just made a donation I believe this site is so valuable and hopefully we can reduce a lot of the expenses. I like the format instead of a Facebook format. [ more ]
Thanks Calmoseptine I purchase, use and promote your product and appreciate your support! [ more ]
Good to know Bill! When you started this thread it was said that none of the sponsors were still paying for their ads, so it appeared that they were getting free advertising. Thanks to Calmoseptine for continuing to support the site! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Dr Shen did several balloon dilitations on me and put me out each time. [ more ]
I've had balloon dilation under anesthesia a couple of times, after digital dilation without anesthesia was just too painful. My doctor said he had never heard of anyone experiencing pain from digital dilation in a regular office visit until me. In a way, I'm relieved that more people experience it.... at least I'm not alone. I should direct my dr. here... maybe he might learn something. . [ more ]
I had a stricture-plasty done several years ago, and I have maintained it well using self-digital dilation. I can actually feel where he clipped it. the recovery for me was not bad. However, I do get sphincter spasms and have fissure issues anyway, and because I suffer some leakage almost daily, I am not sure I want to risk more surgery or even botox to treat it, because of the horror of leaking uncontrollably. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Thanks all for the responses. Keep them coming! We luckily have wonderful insurance so are covered for 4 lifetime IVF cycles...hoping for luck with cycle one which will begin mid November. I am currently taking birth control pills to get ready. I have consult with dr on 11/5. My RE has never said 100 percent that my 2 surgeries are the issue for us but it makes sense being that all other factors are good and I had no problem at all conceiving my son pre j pouch. he also said that in order to... [ more ]
Just wanted to share that I have a similar story and a happy outcome. Had no problem getting pregnant with my daughter in 2009, but after delivery my UC flared out of control and I had my first surgery when she was 3 months old. After a disappointing pouch experience, I went back to the temporary ileo 2 years ago and started trying to get pregnant, but after about a year of trying we got a fertility workup. My HSG was not quite "perfect," one of the tubes had some resistance in it, but it... [ more ]
I did two fresh cycles and a frozen and got pregnant all three times. I miscarried the middle pregnancy (the frozen cycle) early on. My kids are now almost 8 and almost 5 1/2. My best advice is to avoid the temptation to over stimulate the ovaries. Don't try to get as many eggs as possible. Have a dr who can be controlled about it - we got about 20 eggs both fresh cycles and that was reasonable. I did get a slight case of hyper stim the second time and it isn't fun and can cancel your cycle,... [ more ]
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J-Pouch ForumsOstomy & Skin
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Thank you Sharon! I won't begin yet, but I will start shopping for balls! [ more ]
Shari, 3 Weeks is way too soon to start any abdominal exercises...I would wait until at least 6...then I would start out slowly. I have 3 different sized balls...the biggest is the huge Swiss ball, it stands about 2 1/2 feet tall and I keep it blown up to just under full pressure. Basically I start out by sitting on it, both feet flat on the floor and try to find my center of balance. I hold my arms out to the sides and then I then bounce slowly up and down (like little kiddies do) without... [ more ]
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J-Pouch ForumsGeneral Discussion
As I recall, my husband went back to work after a month. [ more ]
Yes, so true and thanks for letting others know. I found that returning to work was far more easy than sitting at home and thinking about my butt 24/7. Work gave me the distraction I needed to begin my recovery. Sue [ more ]
I agree Scott. The times I had to sit there and think about my pouch and reflect on what happened were the worst times. I definitely needed the time off but not without distraction most of time being I have a 12,8, and 2 year old and since my wife picked up a job while I was out I was the one doing most of the stuff with the kids especially my 2 year old I had all day when the others were in school. I always pushed myself to do things and stay active after my 3 month bout of anemia. I would... [ more ]
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J-Pouch ForumsGeneral Discussion
I just decided to check this out on the internet and found out that it is more common than I thought...what I read has me a bit freaked out...aparently there are a basketful of other congenital deformities that come with the Migrating kidney...and I have at least 4 or them! Scoliosis, hemivertebreae, bicornuate uterus, hypoplasia plus all of my other problems...I wonder if this is all part of one big thing that no one has ever bothered to diagnosis??? Sharon From the pediatric Urology site:... [ more ]
Wow. A tender kidney in the normal location is usually a sign of infection, but this isn't the normal place. The would be hard to miss on an MRI or CT scan of the abdomen. If you want some expert advice, I think a urologist would probably be the best path. [ more ]
Thanks Jan, No, I have no problem urinating...intake-output is just fine...I drink a lot, mostly only filtered water or tea and my scan showed no stones but the kidney is really enlarged...Yes, I have Dheler's-Danlos so that would explain the connective tissue problem. It is the length of all of the urethrea that confounds me...does it stretch? No one tells me the why...it was never noticed before 2008 and I have had tons of scans in my life...I had just figured that it shifted or was pushed... [ more ]
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J-Pouch ForumsGeneral Discussion
A doc that's afraid of Lomotil would probably be incapable of considering DTO (deodorized tincture of opium). TinCan got it right - Imodium and Lomotil are quite different, and many of us seem to get quite different results from the two. It's essentially impossible to abuse Lomotil - the atropine they add is of no consequence at appropriate doses but quite unpleasant if people try to get a buzz from the diphenoxylate. As far as whether things settle down, most folks report that they do. I... [ more ]
I am two years post reversal and evenings continue to be my most active period (or one of them anyway). I have had to be much more strategic when going out at night but it hasn't stopped me. Immodium and lomotil are not the same thing. They are similar chemically and both are used for treating diarrhea but are quite distinct from each other. I have tried both and they behave differently too - at least for me. There have been several discussions about tincture of opium. You may want to do a... [ more ]
For me the hours between 4pm and 8pm are the most active. (I'm three years post takedown) I usually go once when I get up in the morning then not all day until around 4:00pm. So during those evening hours I usually go 3 or 4 times. It can be a bit of a pain when you go out at night but I guess I have just gotten used to it. I can get in and out of the bathroom now as quick as urinating. [ more ]
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J-Pouch ForumsGeneral Discussion
I have been taking it for about a month and it seemed like it is helping keep everything moving smoothly. I did see a difference from not taking a probiotic at all to taking this on a regular basis. The difference I saw was having an easier time passing stool when I had to go. It suggested to take it on an empty stomach and I support that because I've had much better results while taking it on an empty stomach rather than after eating. When you first start taking it I would take it when you... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Many folks can sleep through the night. I could when the Cipro was working, but now I seem to get up once. If Imodium doesn't work well for you, you might ask your doc about Lomotil. I get better results with it. [ more ]
after many years with Kocks Pouch I still suffer with pain. Does anyone seem to get a nights sleep or does everyone awake after 4 hours like me? All the questions I have asked over the years are met with a blank look. I do have a problem with milk type food and I know not to have these. I have a healthy diet and have only been given immodium. This seems to cause cramps now so have left these off. After years of asking for anti biotics and told no my GP does allow me low dose. This has helped... [ more ]
Cez- I find that Metamucil makes my stool consistency much more, well, consistent. Bowel slowers (Lomotil, Imodium) have a similar effect through a different mechanism. Have you experimented with these? [ more ]
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J-Pouch ForumsGeneral Discussion
Should be fine to take it with a small amount of water. This should have been in your instructions. Jan [ more ]
Another quick question. I take Pentasa and 6mp. Should I take it in the morning (4-6 hours earlier) or just hold off until after the test? [ more ]
bratcat. I have been getting pelvic MRI's with and without contrast annually for many years for the same issue-fistula. I NEVER was told to take dulcolax or anything else--- just fasting for about 4- 6 hrs before the test. Never had a problem doing or having the Radiologist reading the test. Your radiology facility must have thought u had a colon. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Have u tried miralax? My Gi suggested that for my stricture at the anastomosis. [ more ]
I have 2 strictures at least above and below pouch and go toDr Shen in Cleveland for balloon dilitataions every 3 months. I still get blockages occasionally but now have a digestive enzime before every meal and drink much more water than I did previously, Dr Shen recommendations and that has helped. Also no nuts or fiber and I try to chew well. My narrowing is very small so hardly anything fits thru my strictures even after dialations. [ more ]
Thanks for your input. To clarify, I have narrowing at the inflow "tube" leading to the pouch that's high in the "tube." This is a problem that due to the location is being left as is. (Can't resection due to location, balloon very risky so as long as I can deal w/ it, it will stay as is & hopefully not get any worse.)The stricture(s) are lower. 2 different areas. Decided to go ahead & do the Gastrograffin & the dilation. I need to speak w/ my surgeon again to clarify a few... [ more ]
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J-Pouch ForumsGeneral Discussion
What about Dr. Richard Whelan with St. Lukes Roosevelt? He seems to have such a stellar reputation as a colorectal surgeon, but never mentioned on this site. Why is that? He did my colectomy and J-pouch and was excellent. [ more ]
Yeah it sucks having to do all this research and go through such a rigorous and monotonous process to find the right Dr but in this case its definitely worth the time and energy to do the proper research and find the right DR for you. Remember this Dr is going to determine how the rest of your life is going to play out so make sure you get as much background and do as much investigative work as possible. I think there are always positives and negatives to every Dr but you gotta decide what... [ more ]
Thanks all. Phonix, that level of care is amazing...never heard of that. My UC was never that bad. I could live and manage, worked out, went out, etc. Until all the complications in 2011, at least. That's when some thought it might be more like Crohn's due to a stricture, abscess, etc...but it's indeterminate or just an unusual case of UC. The distinction isn't all that clear in all cases anyway. My bag has functioned well enough, it's just that I don't want one anymore. But it's tough going... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Oh, and there are also the Lacaid pills you could try. You take one with your first bite of dairy. It may be worth a try next time you have anything with dairy in it. If you do try it, don't buy the chewable ones...the one you swallow work better. It can't hurt. [ more ]
Milk shakes are common problems for those with lactose intolerance, because there is so much milk in it. Most adults are not or intolerant of milk, but just the milk sugar, lactose. Pizza is not a very good test because there are so many other things in it and the combination with the spice and grease can be kryptonite for many of us, even if we tolerate milk in any other form. My husband did not even know he was lactose intolerant until he developed UC. It was when he was in a flare that... [ more ]
Marianne, I am not sure I am actually lactose intolerant and have never been tested. But in the past, having things like milk shakes would pizza always had negative side affects. I believe I am as milk does cause problems. Rocco [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thanks Guys! When did everyone feel like they were spasm free? Like how many months out? I can't wait until the spasms completely go away. [ more ]
My absolute forbidden ingredient is "mushroom soup". Tried using it in my favorite recipes (gravy, tuna casserole, and pot roast) from month 1-6 post TD with the same result. Symptoms were nausea, extreme gurgling, frequency, and it kept me going to the bathroom all night long. [ more ]
You probably have had onions in other things so felt safe in trying the soup. It makes sense to me to do so at 4 months. I would wait a while before trying it again. Have you tried taking digestive enzymes? Pizza is my favorite food so my pouch had to learn to love it pretty soon after I started using my new plumbing. LifeExtensions and Solray are two brands I've used and they both work well. They help digesting "repeating" and gassy foods. [ more ]
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J-Pouch ForumsGeneral Discussion
I haven't, but my cholesterol levels dropped about 100 points after my j-pouch surgery. Perhaps you are not absorbing as well, but unless you are actually malnourished, depleted in some nutrients, etc., I would not worry about it. If all your other labs are within normal limits, you should be fine. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
I also have bad inflammation in the 1-2 cm of my cuff, and am scheduled for pouch advancement surgery in November. My guess is that 6cm is too much cuff to do a transanal pouch advancement. As explained in the article below, the initially stapled anastomosis must be "within 3 cm to 4 cm of the dentate line" for the surgery to be feasible. http://rapidshare.com/share/6D...1AF6DAB71B3143DA6741 They simply cannot pull the pouch down that far without making an abdominal incision and basically... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Yes, sitz baths are what you need. They will help it drain, and increase the blood circulation, improving healing. This is considered a contaminated wound, so if some stool leaks out, it is no big deal. As mentioned before, just empty the basin and replace with clean water. No need to add Epsom salts or other additives. You can even use warm, moist compresses, basically, sitting on a warm, wet washcloth or gauze. What you do NOT want to happen is the draiange hole to crust over. You need to... [ more ]
After a BM, take a warm (actually, as warm as you can stand it) sitz bath. I'd recommend taking as many during the day as you can fit in. If you happen to leak a little stool into the sitz, just empty it out and start over (this has happened to me in the past as well. Best to try and keep the "wound" open and draining, and sitz baths are quite good in that regard. Stool going back into the fistula won't be harmful, according to my surgeon; however, you don't want to chance a UTI. [ more ]
I would let it drain on it's own. It sounds very uncomfortable. I wouldn't do the sitz bath as you are right in not wanting to get fecal matter back into the open fistula. Perhaps you can cover your bed with something to protect it and lay in such a way so you can rest. Take care [ more ]
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J-Pouch ForumsGeneral Discussion
Here is France, where most scripts and meds are fully covered under the social health insurance...antibiotics were served up like M&Ms...until about 5yrs ago...when they started an add campaigne called 'antibiotics are not automatic'...meaning that they should be last resorts and not firsts unless expressly indicated. They have managed to lower the prescription rate by 20% +/- but are still having problems convincing people that they are usless for viruses... Also we are having a really... [ more ]
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J-Pouch ForumsHelp! Need advice now!
The first trimester can be a challenge, even with a colon, especially when you are new to all this. Even though that fetus is teeny tiny, all the hormones and the growing uterus will put pressure on anything around it. Things will change daily, back ache, brick feeling on your bladder, etc.. But, once the uterus rises out of the pelvis, things calm down a bit within the pelvis. So basically, this sounds like normal stuff to me. Jan [ more ]
As an update - My surgeon congratulated me! He said he obviously thought waiting was a better idea but that through the 9 months the jpouch could still heal. I still have questions though - 1 Yesterday and today I've had MAJOR pressure from inside on my pouch. It comes when I'm standing or sitting. Going to the bathroom or passing gas alleviates the pressure a little but it comes back. Is this gas pains? I feel like a brick is just above my rectum and that I can't get rid of the pressure! [ more ]
Whatever scar tissue that would form on your tubes nd ovaries woud have formed within a few weeks of your j-pouch surgery, so t was there by he time of your take-down. The take-down would have little to no effect, because of the lcation f the surgery. You were just lucky to not be a big adhesion former. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Pure Citrus Orange Air Freshener. It uses highly concentrated oils extracted from fresh oranges to kill odors instantly and leave the air smelling clean. I've tried this product and I like it. [ more ]
I read an antique newspaper opinion piece that was laminated to the tabletop of a restaurant a while back, which I believe may hold the answer to this problem. The writer was aghast (or a-gassed) at the growing trend of people placing toilet facilities INSIDE their homes. The author chided his excessively-plumbed readers for their thoughtless toilet placement decision, which needlessly assaulted their families' and guests' olfactory senses, while the tried and true Out House was such an... [ more ]
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J-Pouch ForumsHelp! Need advice now!
MK, If all of these problems started after you started taking new medications I think it's safe assuming they are the cause! Maybe it is just one of them causing them. Your systems are horrible. It took me 10 years of my feet slowly going bad before I finally found out I now have neuropathy. No one could tell me what was wrong with them during that time and I saw plenty of doctors and had many tests, including an MRI. It got thrown in my firomyalgia bucket and the rheumy said the problem was... [ more ]
MK- No insult was intended. It sounded like your interaction with your doctor was deteriorating badly. We'll get better results from these interactions with docs when we can stay calm. Although it isn't fair, this is true regardless of how justified the upset is. I'm not blaming you here - not even a little - just trying to suggest a strategy when it's at all accessible to you. Others have pointed out here that our docs have the same goals as we do. [ more ]
Sharon, You always have great insight and intuition, and you are so much appreciated. I do think that this disease presents locally early on and over time can become systemic involving all organ symptoms. Humira and Imuran act globally but seem most effective locally. I don't know what therapies are available for these non-GI symptoms but as you know so well; they can be serious and disabling. Thanks again, MK [ more ]
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J-Pouch ForumsGeneral Discussion
I agree to stop the probiotics and take the antibiotic. My probiotics, VSL#3DS cost that for 40 packets. I have to go back to paying for them again after the first of the year until we reach our deductible, ugg. The thinking is that probiotics are counter productive. The antibiotic with be killing the good bugs you are adding along with the bad bugs and may miss some of the bad bugs... My Internist has me double up on probiotics for a while after taking antibiotics and not take them while on... [ more ]
I need a coupon for Xifacin. Where did you find it> I would fill my script tomorrow if I could. It would cost me 1500 to get mine out of CVS, my insurance also stopped covering it. [ more ]
Bootstrap: is it possible you have a sinus tract in your pouch? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Angela. As awful as this sounds i am glad you have cdiff!!! Hopefully it will be fixed with one round of some evil antibiotic. Make sure you get another cdiff test for the all clear signal. And if you still have problems those itis things can coexist with cdiff. And yea for you for stepping up and taking charge of your health. best wishes [ more ]
Well the winner is....C. Diff. So far that's all anyway, just got test results back but haven't been in to see the surgeon. I was concerned about this and wanted to make sure I didn't have any of the suggested issues - pouchitis, cuffitis, or c. diff - and he said I was fine and just taking time to adapt. I've been suffering huge for a week and it was my GP that looked further at my troubles. Thank you all for responding, really helpful. I think I've learned how much I need to be the... [ more ]
You could have pouchitis, cuffitis, or cdiff infection. Or all of those. You need to see your doctor. If your surgeon is not available go see your gi. That be patient motto is useless if you have any of those things. My post takedown days were exactly as you are describing. For one month i listened to other jpouchers and my surgeon's nurse and then my surgeon saying ...it will get better. I finally got back to a gi who scoped me and told me i had severe pouchitis and severe cuffitis and that... [ more ]
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J-Pouch ForumsHelp! Need advice now!
It could be yeast. Try elimanating sugar and/or wheat for two weeks and see if you improve. [ more ]
My doctor called in Lidocaine 5% ointment. That is amazing. Burns a little when you put it on but in a few minutes: RELIEF. Maybe this would help give you some instant relief through this. I had one weekend I was really sick and my poor butt. It burned so bad so I asked Target Pharmacy and that is what she recommended. So glad she did. I have only used it a few times but grateful to have on hand. But your doctor does have to send in a prescription for it. Good Luck. [ more ]
As quickly/suddenly as this came on it went away. I am having some frequency as the braxton hicks contractions become stronger but am finding that the discomfort is pretty non-existent, knock on wood. I have begun having my wafers again to keep things more formed and find this is helping tremendously. I am one week out from delivery and getting excited/anxious. Just nervous about my "bowels" waking up after the spinal wears off. I have a pretty understanding OB and he is on board with... [ more ]
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J-Pouch ForumsPouchitis
Allison, I am treating pouchitis for 18 years and never had C Diff. It is believed I suffer from a bacterial overgrowth situation, and I have combated it with rotating antibiotics (cipro, flagyl, xifaxin, augmentin) one week, and then lactulose (prebiotic) the next. This, along with changing my diet to reduce sugar and carbs dramatically, has really seemed to help. I am taking lower dosages of antibiotics than in the past, and I feel like I am in better shape with the pouchitis. [ more ]
I take Augmentin for recurring or chronic IPS, not pouchitis. Since I have not tested for c.diff the last few times tested I assume it's IPS. I was diagnosed with this by my GI at the Mayo Clinic. None of my pouch scopes and biopsies indicated pouchitis. I don't like taking antibiotics so often but that's the treatment, along with Lopermide, prescription Imodium. I take Flagyl every once in a while too. You are right there are many on here that take Cipro all the time and don't get cuffitis. [ more ]
TE Marie, No, thank you for responding. I want to hear from anyone who has information/experience. I'm wondering why I should be that worried about c.diff. I mean I am, but I know several people who have taken cipro for years and never gotten it. I just want to make sure I'm aware but I don't want to get super worried, I don't need that right now. (I have so many health issues all the time it can drive you crazy!) My question is also about pouchitis and just riding this wave of antibiotics,... [ more ]
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J-Pouch ForumsOstomy & Skin
With UC I had a lot of things I couldn't eat. Now with an Ileostomy I can eat anything,don't know why salad causes a problem if you chew well. [ more ]
I eat salads all the time with my ileostomy, in fact just had a steak salad for dinner. The only thing I avoid in salads are mushrooms. What is your concern? [ more ]
Start small and chew chew chew! In the beginning, I would avoid things that are especially prone to causing gas (beans, cruciferous vegetables, etc.) and definitely avoid things that could cause obstructions, especially in the early stages of healing when intestines could still be swollen (nuts, corn, really fibrous foods, mushrooms, etc.). You might want to check out the United Ostomy Assoc site for more ideas: http://www.ostomy.org I am only a few months out from my surgery and enjoy lots... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Well, the REAL problem is that any way you slice it, ANY method of birth exposed you to risks. Some are short term and some are long term. It is impossible to predict where any one person will fall into the risk ratio, particularly since there can be, and often are unpredictable obstetrical issues that crop up during labor and delivery. I certainly did not anticipate a frank breech presentation during my first delivery. This was not known until labor was well underway. So, c-section was... [ more ]
Hey! No problem! I just feel that there's very little information for ladies like us out there and we want to know these things - not just take a chance on our bodies or our babies. The most recent study that I saw (Jan's files) was 2007, which isn't that bad, but not terribly recent...it's would be nice to have some that were within the last couple years and from a variety of sources. Even the studies don't agree I've found, so it's hard to know which way to go. [ more ]
Great info on this thread! I'm 23 weeks along with twins and my OB wouldn't touch the issue, and even my MFM's response was like "huh, I'll have to look into that." 3 months later, we haven't really addressed it. I'm going to print out Jan's studies (above) and bring them to my next appointment. I know the vaginal / C-section issue has been heavily discussed on these boards - any experience with twin pregnancies? btw- don't mean to hijack the thread! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Hi Mhairi! I'm 23 weeks right now- about 11 years post J-pouch. I had (mild-ish) nausea and slowing of the bowels in my first trimester. I also have had a feeling when I sit down that feels like it pushes all my organs up (not sure if this is what you're referring to, above). I've been attributing that to uterus growth and haven't been stressing about it. Congrats on your pregnancy! [ more ]
Hi! I'm 16 weeks and haven't experienced that quite as much. I do notice that I'm going more frequently and getting constipated (I feel like I really have to go, then don't, then get up and wash my hands and really have to go again..everything's still pretty liquidy though (sorry - TMI!). I have been feeling a bit of pain where my ostomy used to be (I had my surgery in 2 steps) and I'm wondering if it's because the muscle scar is stretching...could that be it for you too? [ more ]
Thanks for your reply Jan, I was the same with my daughter (pre j-pouch) here we call it Gaviscon and I had a huge bottle I used to carry around with me and swig right out the bottle lol! x [ more ]
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J-Pouch ForumsGeneral Discussion
I got some nupercainal. It works! I had forgotten about it. Thanks for the reminder - it's nice to have options! [ more ]
OK, now I remember. I used it for a while when I couldn't afford my lidocaine prescription. As I recall, it wasn't as effective as 5% Lidocaine, but it did have a noticeably beneficial impact on the pain associated with anal excoriation and butt burn. I'm going to get some and use it in those instances where lidocaine is perhaps overkill, and the nupercainal would do the job. Thanks! . [ more ]
No, Nupercainal has dibucaine 1%. The others have lidocaine 5%. Both are local anesthetics. [ more ]
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J-Pouch ForumsPouchitis
I've had pouchitis since my take down in March. Initially I was put on cipro and flagyl. It turns out I have tendon problems probably due to the cipro so I stopped that. I have also taken augmentin. In addition I've tried canasa and rowasa. I have been tested for cdiff. There is a certain percentage of jpouchers who have chronic pouchitis. I think I may be one. I did have cuffitis as well. Since March I've had two sigmoidoscopies confirming the cuffitis and pouchitis. [ more ]
Flagyl should work pretty quickly. Since you are so soon out of surgery can you make a trip back to your surgeon. Seems you need some focused skilled medical attention. and unfortunately you found out the hard way, ers are not great place for jpouchers. Always have to educate them on the different anatomy. And pretty useless at doing anything other than giving iv hydration. [ more ]
Nope no scope. Went to Er into home state and had surgery in Illinois. I had to educate Staff in er on what a jpouch was. Does flagyl usually work instantly?Is is safe to switch from antibiotic to another like that? [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
I have a perm ileo, so I didn't have the concern of long term continence. When I talked with my high risk OB about this issue, he was fine with me trying a vaginal delivery if that's what I wanted. The only caution he gave me was that if I needed an emergency c-section, he would not be able to take special care of my intestines. His priority would be getting the baby out safely. With a scheduled c-section he felt he could be more thoughtful about how to proceed. In the end I opted for the... [ more ]
Obviously there is no "right" answer for every woman with a pouch. You seem to be aware that there is an increased risk of incontinence if you decide to have vaginal deliveries. If you think that risk is worth it to have your babies vaginally/naturally than you have your answer. C-sections can be limiting to the number of kids you have and can cause more scar tissue that may cause health issues and blockages down the road. Always do what makes you feel most comfortable, but as most IBD... [ more ]
I'm sorry, I don't have much advice on this- but I am interested to see the responses you get as this is something I've often wondered myself. Best of luck to you!! [ more ]
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J-Pouch ForumsGeneral Discussion
I can't bring myself to give up coffee either. I drink 2 or 3 cups a day, in the morning. I try to drink caffeine free sodas but I break that rule at the slightest provocation. From what I understand, caffeine is not the only colonergenic in coffee, so even decaf is a gut stimulant. I don't drink, so I can't comment on that except to say that I read somewhere that Dr. Chen recommends a glass of wine at bedtime to introduce acid to the gut. Not sure of the science behind that, or if it is... [ more ]
Thanks to all for your feedback. I am starting this FODMAP diet and so far I feel better with a little less frequency and urgency. i have eliminated glutens and lactose and cut caffeine, drinking 3/4 decaf 2 cups a day. No headaches yet! I am going to try no beer for a week, just wine and then add the beer back. My appetite for alchohol is down since surgery 3 yrs ago, the most I will have is a beer or glass of wine. thanks again to all. [ more ]
I do FODMAP and drink red and white wines, dry though as i despise sweet wines. I also enjoy good draft beer but find that they are more problematic than the wines. Real english ales seem ok, probably because they dont have all the junk in them as most american beers. [ more ]
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J-Pouch ForumsGeneral Discussion
Congrats! I was part of an Oly lifting gym but haven't been able to after having some iron issues but can't wait to get back to it. I find since having my rectum removed I can't lift as heavy. I was told it is a kegal thing but I will get back to a PR with a deadlift eventually... As far as hernias. I have one small hernia. So far it isn't going anywhere and I was told it might not so just be smart and lift with legs and wait until you are cleared to lift over a certain weight. I wanted... [ more ]
I am an avid weightlifter. This summer I set the Michigan Senior Olympic record for my age group (50-59) and weight class (198lb) with a bench press of 315 pounds. My surgeon at the Cleveland Clinic as well as my primary care physician are aware of my weightlifting and encourage it. I resumed my lifting six weeks after my takedown, my doctor sent me for an ultrasound five weeks post takedown to ensure I was properly healed before I resumed lifting. It has been just over three years since my... [ more ]
Update: Granted, some of you may have already known some of this info, but I hadn't come across anything specific and thought someone could use it. After speaking with the surgeon, prolapse is understood to be typical of those who receive the pouch at a very young age (I understood that to be around <12 yrs old). Prolapse due to lifting exercises or otherwise is relatively unheard of. Furthermore, the information I'm repeating here is specific to the j-style pouch, disregarding other... [ more ]
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J-Pouch ForumsGeneral Discussion
Could this dietician be confusing Imodium with omeprazole? [ more ]
I am unsure what she was talking about. I am unaware of an effect on stomach acid by Immodium. It slows the gut by fitting into the opiate receptors. I never heard of that side effect. I've been taking it for 18 years. If you really concerned, I'd ask a pharmacist, who actually knows the specifics of drugs. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Donna, it sounds like you have left no stone unturned with your j-pouch. You even had to suffer through your cancer with a bum pouch I'm glad you are at peace with your decision and hope your new pouch works great. Those better days are close now [ more ]
Sharon, I can't imagine how difficult this had to be for you at such a young age. No child should have to go through the perils that you have gone through. Yep, life is not fair sometimes but it sure can make us stronger. I am looking forward to the freedom I have been missing and yes, just taking a walk without the pain and worry about all the stuff that goes with incontinence. I know there will be a period of adjustment but also know that in a few months will be experiencing life the way... [ more ]
Donna, I am so sorry that this road has been so terribly miserable for you...it is just not fair...one of the reasons that I had the k pouch done was full blown anal incontinence...no sphincter whatsoever in my case (destroyed at 2 during my 1st surgery...I ended up with my colostomy. After the reconnect at 3 I was partially incontinent...at 10 they tried to fix but made it worse. At 14 & 18 had 2 gracillis flaps done...the 1st worked for 2yrs, the second was a failure from day... [ more ]
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J-Pouch ForumsGeneral Discussion
Highly doubtful that you can "damage" your pouch. My sister has had her j pouch for 22 years and drinks coffee everyday.I drink a lot of coffee too. Maybe if you drink gallons a day! I don't like soda so I don't drink that. [ more ]
This idea sounds like a heck of a stretch. The pouch is just restructured ileum, though it gets a bit more like colon over time. Plenty of us have individual food sensitivities, and plenty have IBS, but these have essentially nothing to do with the pouch. [ more ]
That is a good question. I eat anything and everything except for gluten (95% of the time). I do sometimes have an upset pouch, but I never learn I don't know if anything is actually damaging though. Becky [ more ]
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J-Pouch ForumsPouchitis
It's been tried occasionally but not well studied at all. I'd try it before abandoning my pouch, but I'd stick to well researched methods if they work reasonably well. [ more ]
It is a treatment for recurring/resistant C. difficile infection. So, unless you have that, not likely you'd be a candidate for the treatment. That said, it does make some sense, since pouchitis is felt to be ab inflammatory response to gut flora, even if there are no pathogens. But, I don't think there has been any testing in that area. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
It may be helpful to remember that dehydration is a common issue. Withholding fluids at any time is (IMO) asking for trouble. There are much better ways to control the consistency of stool. [ more ]
This is another example of there being no one right answer for everyone. It is more common for j-pouchers to have problems reducing diarrhea, and one strategy is to avoid drinking much fluids with your meals, and hydrate well between meals. If you have problems with frequent obstructions (not common) and these are food related (even less common), then drinking fluids with meals makes sense. Some people are even restricted to a liquid diet only. But this is rare. So, I would focus on the... [ more ]
I drink, a lot of fluids and at specific times...I have about 1 quart of fluids when I wake up (water, coffee & juice), at least 1 glass of water during meals, 1 between meals and 1-3 mugs of tea in the evening...that gives me about 2-3 quarts/day...I still get dehydated if I don't drink enough water (coffee and tea or alcohol don't count...they dehydrate you as much as they hydrate)...I don't care if I drink during meals because I do so before them...you need to remember that... [ more ]
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J-Pouch ForumsGeneral Discussion
...Good attitude my friend! [ more ]
My surgeon, Dr. Frankhouse, just called, and we had a great talk. He said the bidet is actually the better option to a sitz bath, so not to worry about it, just so long as it effectively cleans the wound. I feel a lot better about things, after the shock has worn off. I guess it is medically the best procedure to do, although it is tough on the patient for a short period. So, I'm pretty sure if given a choice, I would have chosen long-term good at the cost of short term pain anyway. I told... [ more ]
David, I am just reading this after my 11th shower of the day. I don`t feel so bad now after reading what you are going thru. Hang in there and for Gods sakes put that mirror down. Which surgeon did you end up going to? Good healing thoughts coming your way!...J [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks Marianne, The Rice Milk was the last thing I thought it was because I have been drinking Rice Milk for at least 15 years if not more. [ more ]
Glad to hear it's not a Crohn's diagnosis. It's amazing how something innocent like rice milk gave you so much grief. Hope you continue to feel better. [ more ]
Got my results yesterday. The CT Scan was negative and the doctor agreed with me that it was the Rice Milk giving me so many problems. Then he scoped me and all was clear so for now I am off the meds. Rocket [ more ]
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J-Pouch ForumsPouchitis
Van, The only problem I had on flagyl for 2 years (250 mg 3 times a day) was a candida yeast infection that was totally my fault because I completely ignored any preventive measures that would have easily prevented it. Now, that doesn't mean everyone will have the same good luck that I had with it. In the absence of known intolerance (which you have not indicated), I wouldn't be overly concerned. Yes, it's best to not require antibiotics, but there are a lot worse things. Hope it turns out... [ more ]
Why the dread? Do you have intolerable side effects? I feel pretty fortunate that I tolerate it pretty well. Other than the funny taste in my mouth, I had no issues with it and I was on it 3 times a day for a couple of months at one time. Jan [ more ]
Thanks for the information. I last had pouchitis 2 years ago. So I guess that could be why. I just dread being on flagyl for another month even if it is alternate days [ more ]
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J-Pouch ForumsGeneral Discussion
I guess you have to ask yourself if you want to continue taking medication? There are many pouchers on this site who have given up their jpouch because of chronic pouchitis, and gone back to an ostomy. None of them have regretted their decision and they all say they have a much better quality of life. Sue [ more ]
That is probably all good advice. I certainly would not give up after trying only one or two antibiotics having adverse effects. In my current rotation in which lactulose and xifaxin play key roles, I take cipro or flagyl only one week per month. Most of the members in my CCFA support group are taking biologics to treat IBD, and they report success with one biologic after another has failed. My GIs have mentioned Remicade in conjunction with treating pouchitis, although they have... [ more ]
You've been through a lot, and probably tried a lot of things. I'll offer some possibilities I didn't see in your post, just in case they were skipped over, or not tried aggressively: 1) Most antibiotics are entirely different chemicals from one another. They do not all have a propensity to affect the liver. Are there perhaps some good, safe candidates you haven't tried simply because they're called "antibiotics?" Xifaxan, for example, would be a very different choice. 2) I take a *lot* of... [ more ]
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J-Pouch ForumsGeneral Discussion
I too am facing the decision to J or not to J. I have had the bag for 22 months without any problems other than severe pain from time to time with the rectal stump. This is about to be removed, but with it also will be my chances of having a J pouch. The stoma and bag have served me extremely well and I am concerned that by attempting the J Pouch will introduce a whole new series of problems and issues. The decision not to J I understand would be final. I really am struggling with the decision. [ more ]
I had my j pouch removed 7 weeks ago. It was a tough process but I am doing very well now! I have to deal with my new appliance which can be a pain but at least it is on my terms. Can't say the same for the 7 years I lived with chronic pouchitis. My favorite thing is sleeping all night long now! I used to get up sooo much every night. You will know when you get to the point that you want to live your life, I did and now I can : ) best of luck! Karen [ more ]
Seems like you answered your own question. If the ostomoy gets you out of continual pain and hospital stays it would seem silly not to go in that direction. I gave up my pouch at about 18 months and my issues (primarily incontinence with butt burn) while affectinhg the quality of life sound much less severe than yours. The end ileo has been far better for me than the J and I basically do anything I want to do. Why suffer? [ more ]
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William J. Johnson
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Bill Johnson founded the J-Pouch Group in 1997.
After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.
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