J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
That is correct. Anti-gas products were not made for j-pouches, but they weren't made for colons either. They are made for gastrointestinal gas. The pills don't care if you have a colon or not, particularly since that is not where they work primarily (if they are going to work). Same with digestive enzymes like Beano. You just have to experiment. There really are no "pouch specific" medications. Jan [ more ]
It's not actually true that anti-gas pills weren't made for j-pouches. They are made for those who have gas issues whether or not one has a colon or not. Many people on this site have found that Beano helps with gas. It seems Beano is usually more effective as gets rid of gas while Gas-X just gathers the small gas bubbles into larger gas bubbles so the groupy gas gang can be burped out. You should give each a try and see if either works for you. You should try one at a time so it's clear... [ more ]
I've tried Beano and Gas-x with great hope that they would lessen my sometimes excruciating gas, but I've only been let down. I guess it's like Jan says, it might be the enzyme you need so it's definitely worth a try. Best of luck to you--may your results be better than mine! Jeff [ more ]
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J-Pouch ForumsGeneral Discussion
Hi prairiegirl, I was in Mt Sinai at one point too and ended up having my surgery at St Mikes. [ more ]
Small world mom2panda! I've never considered that it might be a stricture. It definitely feels like everything is "backed up" so to speak, which as you said could explain the pressure and nausea. And good to know there are other meds for the spasms - right now I'm taking Percocet, which certainly helps calm them, but obviously may have other unintended side effects. Thanks! [ more ]
I'm a Sinai girl too! I had the straining thing too. I was told this is normal. I did/do have a stricture and the bottom opening of the pouch - have your Doctor's checked you for this? The constant pressure does get better, but again I would get checked for a stricture because this is a common symptom. The number of BM's is also normal. I was at 20+ and my Dr put me on Lomotil with a boost of Codeine at night. Even with that, I was 16-20 times per day until the last week. It has come down to... [ more ]
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J-Pouch ForumsK-Pouch Korner
Bodoni, When I take my activia I do it in the mornings on an empty stomach...they say that it works better that way...,not sure if it is true or not. Sharon [ more ]
I take 1 Culturelle capsule in the morning and 1- small bottle of DanActive in the evening. DanActive is in the dairy/yogurt section and Culturelle is in the vitamin isle. [ more ]
The name itself is kind of anti-intuitive for us colonless souls! But if it works and works for your budget then go for it...I use a house-brand from a big box store and it does just fine for me and my pouch's needs...when I feel the need for more potent stuff I use a National health food chain store brand...about 20yrs ago I had a great GP who custom ordered them from a lab that special delivered them in an ice chest...kept them in the fridge up to 30 days...They were fantastic but very... [ more ]
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J-Pouch ForumsGeneral Discussion
My chiro used to do it to me on a regular basis,especially when I had a bloated and inflamed galbladder...she massaged it and other organs to try to stimulate the elimination of the toxins and move the organs around a bit (not so sure that that is always a good thing...) Either way, I had them stop doing it because I became hernia-prone and started to worry when they put a lot of painful pressure on the abdomen... Apparently it is very beneficial for some people and worth a try especially if... [ more ]
Correct name for it is Visceral Manipulation. Some PTs do it, otherwise Rolfers are the most experienced. Breaks up adhesions and helps the digestive tract. [ more ]
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J-Pouch ForumsGeneral Discussion
I'm not sure about the interactions but with any medications you have to time them properly with cholestyramine -- cholestyramine will block absorption of other meds taken 2-6 hours before/after (I say "2-6" because my GI says 2, pharmacist says 6... depends on your risk tolerance I guess). [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stoma powder and 3m barrier spray. Eat 3 to 5 marshmallows first thing in the morning. Put powder on the blow it off and then spray. do this 3 times powder/spray, powder/spray, powder/spray. then put on your wafer. Now the key is making sure you are getting a good fit. It is hard in the beginning because the size changes. all the ostomy supply companies wills end you free samples. My biggest life saver were the nurses at the companies who will talk to you and find out what your needs are and... [ more ]
If you have visiting nurses they should help if not did they have ostomy nurses at the hospital or doctors office? Whoever trained you how to put on your appliance should be able to help you. Also your doctor should be able to help if no one else. That said, I would clean it well and apply stoma powder to it before putting on the appliance. Make sure the hole that fits over the stoma fits tight so the waste won't leak onto your skin. I didn't have much of a problem with this. A visiting... [ more ]
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J-Pouch ForumsGeneral Discussion
I wonder if you might get the desired effect from psyllium fiber (Metamucil, Konsyl). It's certainly used to treat mild constipation. I have the sense that it makes the stool get closer to the consistency of wet psyllium fiber, whether it's starting from liquid or concrete. [ more ]
Yea I only take small swigs of MOM or Mag citrate to move things, doesn't clear me out with such little consumed. Dulculox is heavy duty. My mom was in the ER puking for 24 hours on it (she has a colon). I am sure someone can chime in if they used it with no colon. I know I have friends with pouches that live on stool softners regularly but never asked what they use. [ more ]
I don't think I'm gonna go to the extent of drinking mag citrate I'm not really trying to do a cleanse I just wanted to take something to make the stool a little softer in consistency so I don't have to strain as much to get it out. I was thinking in the line of dulculox but just wasn't sure how safe it was of if this is something some people use on a regular basis. I am open to other suggestions also. [ more ]
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J-Pouch ForumsGeneral Discussion
I'm glad you two are getting some pain relief. I need to go back to my acupuncturist as I have a prepaid visit left. I was going for my foot pain but subsequently went to a neurologist and finally got a diagnosis. I might as well try use it for my abdominal pain. I'm getting an EMG test at Mayo's in a few weeks and it might be testing for pudendal neuralgia, nerve damage which affects the pelvic floor. I know they are testing because of my pain and some or all of it sounds like it could be... [ more ]
I just went for accupuncture and cupping yesterday and the needles behind my left ear killed all my pain. It was so peaceful. The needle in a trigger point in my abdomen, when removed, made all my guts move rapidly and made me think there is something going on in there causing me grief. Today I wore high heels, ate out twice for breakfast and dinner and have been content. I even danced for an hour and did push-ups. I am having nerve blocks done July 8th at Cleveland Clinic but every Saturday... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hi I had similar problems to yours except the fistula and decided to get my pouch removed, there was always a query if I had crohns . My pouch excision happened in march 2011, unfortunately since then I have had many more surgeries, I developed a fistula in my perineum , had a pre sacral abscess, I had numerous procedures to try and solve these problems but nothing has worked, two years later my fistula is now into my vagina and opens out into the perianal wound, which to be honest has never... [ more ]
Remzi is very good but you better make an appointment now to see him. When I made my appointment it was 3-4 months out of a wait. Dietz is very good and is head of colrectal now I believe since Remzi has moved up. I just saw Dietz and Ashburn since she is doing Kpouches now. I loved her! But see Dietz if you can't get into see Remzi soon enough. I think for him you can get in maybe 1-2 months. I had my rectum and anus removed when I got the BCIR. Easiest part was that. I had no pain down... [ more ]
Thank you all so much for your advice! So, there is indication of Crohn's for me at least just in the pouch but I will ask the surgeon about the option to leave in the anus. Is Dr. Remzi the best surgeon for pouch removal? I'm at NY Presbyterian-Weill Cornell and normally see Dr. Lee but I have seen Dr. Remzi before too. Does anyone have any recommendations about surgeons? [ more ]
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J-Pouch ForumsOstomy & Skin
If I shower with my bag on I just put on a fresh bag after I shower. I like showering without wafer to give my skin a treat. Just shower before much food intake so the stoma is quiet. [ more ]
Actually, the Coloplast bags have a filtered vent at the top, allowing gas to escape when the pressure builds up, and the charcoal filter takes away any unpleasant odours, it's a wonderful feature. I remember when I had my temp ileostomy back in 1991, the bag looked like a plastic shopping bag (felt like it too) and would leak from gas build up all the time, I absolutely love the new appliances, so much better, I often forget its even there! [ more ]
best solution I have found for gas in the bag, is to focus on your eating habits, how you eat, what you eat, etc.. to try to reduce the gas itself. [ more ]
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J-Pouch ForumsGeneral Discussion
Awesome! My daughter has had her pouch for 3 years. It has been a challenge for her. A support group of her peers could be just what she needs [ more ]
Excellent. My son has had his jpouch for 10 years now, he is 12. I have been searching for a group of kids/teens for him to relate to and talk about school issues, which he has many. I look forward to communicating and learning! Tricia Sams Mom [ more ]
I love that! It's hard enough being a teenager....so great they can support eachother. [ more ]
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J-Pouch ForumsHelp! Need advice now!
It's OK to say hospital and doctor names. Are we talking to the j-poucher now,or the mom? I'm confused too. Good news that this is not a recurrence. But if there was a high CEA before the j-pouch, that sort of implies a cancer diagnosis before (unless there was a high CEA without any tmor findings). Jan [ more ]
I'm still confused. You've written before a few times that he "saved her rectum." How much rectum did he save? Way more than the cuff? Is that why the conversion to cancer happened, because she was left with more rectum than a "normal" J poucher? [ more ]
No this is not a reoccurence - 2nd worse case of ulcerative colitis that Hopkins had seen - only one Doctor said he would go the save the rectum route that was 19 years ago - and althopugh Dr has moved he has referred her to another team at Hopkins - I see they have the Sidney Kimmel Ctr there - the diagnosing Dr is where they saved my life in DC - but does not have a NCIS affiliation and I see they are promoting it more and more - are we allowed to say hospital names - we head for Ohio... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thanks so much for the replies! He's trying to wean off the Oxycodone in hopes of that helping. Pedialyte is a good tip also, he was drinking that prior to surgery... I think I'll stock up again, he seems to have a hard time getting enough liquids down, as that adds to the nausea. I'll be posting another concern that has come up... :-/ Thanks again! Della [ more ]
I don't mean to scare you, but the Nausea will take a while to settle. You may have to manage it and keep it under control until you recover. Of course there are meds your surgeon can prescribe, but as you reduce your painkiller, nausea will start to get better too. It was the biggest abdominal surgery there is. Nausea is a big issue for many after these sorts of surgeries. I hope you are not one of them. There are several ideas posted in a different post. Here’s one that may help. ... [ more ]
I assume he has a loop ileo? Watch for the amount of stool and how liquid it is - loops tend to be prolific and dehydration can cause nausea too. Have him keep the fluid level up if he can, even through the nausea. Pedialyte is great for replacing fluids without extra sugar which tends to speed things up. In my experience the generic versions taste horrible, so go for the real thing. YOu can get powdered single serve multi flavor packs which might be easier (and cheaper) to manage. Just pour... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Yeah, the thing is that perforation is not necessarily a big "event" with stabbing pain or something obvious that you might expect. I've seen people with a ruptured gallbladder or appendix have nothing more than a little cramping and a low grade fever. When the gut stops working after a minor invadive procedure, I get suspicious.... Jan [ more ]
I mostly agree. Heck, folks need to be attentive to symptoms of perforation even if they haven't had a procedure at all, since it can occur spontaneously. Nevertheless, the pressure on the bowel wall during a pouchoscopy is very slight, compared with the pushing needed to advance a colonoscope to the cecum. The likelihood of a perforation is small in either case, but I believe much smaller for a pouchoscopy. Statistics are easy to misunderstand. Rare events do occur, and if we are... [ more ]
These patients who perforated came from smaller hospitals to us to "fix," and they were siiiick. Any scope procedure runs that risk, though like Jan said, it's rare. The patients were not J pouchers. However, we're just as much at risk, though low and rare, for that complication. [ more ]
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J-Pouch ForumsK-Pouch Korner
Don't give up the fight yet, if you can hang on until someone gives you some sort solution as to the whys and what can be done about it...it does not sound 'mechanical' but more 'functional'...there should be some sort of solution possible to give you relief and a painfree life. Sharon [ more ]
It looks cool. I have done this with freezing fruit and using a vitamix but my vitamix is gone and this looks like fun Not sure how much longer I am keeping my pouch though. [ more ]
Wow! Want one yesterday! I could finally give up the dairy that way... Sharon [ more ]
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J-Pouch ForumsPouchitis
Its really annoying me, specially as i have to wait till tuesday to speak with my nurse. Is it easily treatable? [ more ]
In my experience, bleeding is nearly always a sign of cuffitis. But, in a few cases it occurs with pouchitis (particularly C. difficile pouchitis). The treatment for cuffitis is mesalamine or hydrocortisone suppositories. Also, you can have both pouchitis AND cuffitis. I know this, because I had them together before. I know they always warn you against alcohol and Flagyl (because it is chemically similar to Antabuse), but there are very few documented instances of the reaction in real life. [ more ]
It sounds like it. I have never experienced the blood symptom, but it definitely can be a symptom. I would suggest giving your GI a call. They will likely prescribe you and antibiotic over the phone, but if your symptoms don't resolve, they will probably want you to come in for a scope to see what's going on. If you haven't taken antibiotics before for pouchitis, with the holiday weekend here and graduation parties, just know that Flagyl and alcohol are a dangerous combination. If you know... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
my boys are 5 and 2 and so far have never needed any extra protection for my stoma. Seems that the bag and at least a layer of clothing is more than enough. [ more ]
Congrats on your decision! When I went back to the ileo, life started again. 12 years and going strong! Your choice of course, but I've never done anything special to protect my stoma. I carried two babies with my ileo, and then toted them around and never had any issues with injury to my stoma. Stoma has been kicked, rolled on, sat on, patted, rubbed, you name it. Never any problems. Even when carrying toddlers and their legs and feet dangled right at stoma level, no problems. I am totally... [ more ]
Best wishes for a speedy recovery from your surgery. Enjoy that baby...time goes by so fast with them! [ more ]
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J-Pouch ForumsHelp! Need advice now!
I have fibromyalgia and was thinking that it sounds like you might have it too. It's good that you are going to see a Rheumy, please be checked out for this. It is thought to be brought on by major stress and unfortunately you have had your share of that the last few years. Switching off of Cipro is a good idea too. Take Care [ more ]
Thank you for the feedback. I'm sorry others are also experiencing this. Without the cipro the pouch acts up. I'm going to try augmentin again. This is the worst pain ever. I'm so physically exhausted all the time and wake up several times a night in agony with arms, legs back pain etc. It seems I never have a minute free from muscle and joint pain and its really eating at me emotionally also. [ more ]
Vanco did this to me. I was olympic weightlifting and doing crossfit 5 days a week then I went on Vanco for C.diff and still have not recovered. I am going to pain management now and taking Norco and Oxy. I can barely walk up stairs. I have been off of it for weeks and just not bouncing back. Tomorrow I am going in for cupping and accupuncture to hopefully relieve some of this horrific leg pain. [ more ]
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J-Pouch ForumsGeneral Discussion
I LOVE my iron infusions. There is no way the body can ever get that much iron in a pill. I was negative 14 once when I got my first one. Right before being diagnosed. I got 2 more since surgery and now I am fine and haven not needed one 1.5 years out. So worth checking into if you don't get up to speed. My leg cramps get so bad, that is usually my sign that I am low and the extreme need to eat ice is a classic sign as well. [ more ]
I Agree with most of the comments. I am getting IV iron called ferraheme. It's a push through the IV. It takes only a minute, but you have to sit for about 20 minutes after getting saline. I became anemic 10 months after BCIR surgery,11 years ago. It was so bad i had to get some transfusions. HB was 7! Oral supplements gave me severe cramps. Ferraheme is the third type of iron I have received over the years. Usually you get 2 treatments, one week apart. I can go anywhere from 3 - 6 months in... [ more ]
Well I got a pleasant call from the hematologist today saying my red blood count is showing 9.9 which is great because it was 7.5 about a month ago so I'm moving in the right direction. I might just be able to get by using the oral iron supplements and not have to do the iron IV drip. I will follow back up with her in 2 weeks to see where I'm at. I knew I was feeling a little more energetic. I hope I can get back into that 11+ range and feel normal again. Fingers crossed but as of right now... [ more ]
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J-Pouch ForumsGeneral Discussion
lol, Jan. Yeah, gotta watch out for that. [ more ]
For me, rumbly tummy is from the gas. So, solve the gas and you solve the noise problem. But, you may not be able to have quiet bathroom visits. I'm going on 17 years and nearly always have noisy poops. And, I never, ever fart off the toilet. Not because I am embarrased, but because I don't want to be changing my undies all the time! Jan [ more ]
Oh, and I actually do use generic simethicone...I just couldn't remember the drug name. As for gas elimination....I am hoping to reduce the farting. So embarrassing, especially when staying with other people. I avoid it. Obviously, only in the bathroom, but it's so loud. I hate it. And I don't burp. Never have. It all wants to go out the other way. tmi, I know....but you all understand.... Oh, one other thing....Ever since getting pouchitis under control, the stomach noises have actually... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
I can no longer take PPIs since I got c.diff. Zantac was mentioned to be "ok". Old thread....funny how these resurface! [ more ]
This post is about a year old so am just following up to see how you're managing? Are you still experiencing symptoms or are you better? I have been having issues since start of March and an endoscope showed inflammation in my stomach, as thus, gastritis. My GI only gave me a medication for nausea, but my rheumatologist gave me a PPI to try (if I need to take my anti-inflammatory) and it seems to be helping (but also know we should not be on these for "too long"..whatever that means) [ more ]
Are you getting the prescription? At least that way insurance covers it. I had an ulcer in my esophugus but it healed with Nexium. That worked the best for me but I can't take control released pills with the BCIR. Not sure if Nexium comes any other way. I might try Protonix again. Prilosec didn't work for me at all. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Thank you ladies! Jill, I actually find your story pretty inspiring (well, your attitude about it anyway ), but I worry more about my husband. He is extremely fearful about all the horrible things he thinks might happen, and if I ended up hospitalized with an obstruction, well I'm pretty sure he would totally decompensate. I have learned to take more of the attitude you describe--don't worry until you have something to worry about, and when you do, keep the faith that good outcomes are... [ more ]
Congrats!!!! I don't have anything to offer but I am so happy for you. [ more ]
Aw, don't get scared by my story! Even though it was stressful, the end result was fine - no surgery, perfect healthy baby. And my second pregnancy I had no problems. So, who knows? Maybe you'll get through without any issues in spite of adhesions. And if not, you can come out the other side no worse for the wear. Try to enjoy this time as much as possible. Congrats! [ more ]
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J-Pouch ForumsGeneral Discussion
gbcronot, As Jan says, Humira may not be the right biological for your son. Remicade did very little for me. I had success with Humira, but only at a higher dosage than normal-once a week. My GI is now thinking about doubling the dose, and I have also added in methotrexate. I do know that there is now a test available for Humira to see if the body has built up antibodies, whether the Humira dose is high enough, whether it is lasting until the next injection, etc. I am having this test done... [ more ]
Jan you may be right it could be a fissure cause his pain usually lasts about an hour after going to the bathroom.We will see if his GI will confirm that.Thank you for your advise I will Pm solomin... [ more ]
I have been taking Humira for my fistula and it has helped. They changed my dx to crohns and since starting it my rectal pain is gone...starts to creep up right before my new dose but quickly goes away in the days after my shots. [ more ]
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J-Pouch ForumsGeneral Discussion
The larger effect might be that if your ability to exercise is improved by getting rid of a diseased colon, you'll be perfectly situated to increase your BMR over time. [ more ]
Gee, my question would be why would you want to know (other than idle curiosity) and what would it matter? Obviously, strictly speaking, your caloric needs would go down slightly, basically due to the tissue loss that does not create that specific energy demand anymore. However, if you had active UC, your energy demands would be even higher than just the colon itself, because the diseased colon sheds a huge amount of protein from mucosal layer shedding. So, depending on that, and your... [ more ]
BMR is very individual -- the calculators online are just estimates. You can get a more accurate number for your current BMR by visiting a local university or lab that has a device for measuring BMR. One such device is the BodyGem -- you can find a list of locations on their website here: http://metabolicratetest.com/b...rimeter-measure-rmr/ As for how your BMR has changed since losing your colon, harder to say. You can certainly compare your actual measurement now with what the formula... [ more ]
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J-Pouch ForumsGeneral Discussion
While it could be pouch-related, it's worth remembering that we're also susceptible to most of the things that give non-pouchers temporary diarrhea: viruses, food poisoning, etc. In the very short term the highest priority is staying hydrated. If it doesn't clear up on its own in a few days then you have to explore pouch-related causes. [ more ]
I take Citrucel 1 tablespoon 3 times a day. I also drink a protein drink after breakfast lunch and dinner (eat first and then drink). I also had my Dr. Prescribe me Lomitil because immodium wasn't strong enough for me. I only take that before bed though. Check out foods that will help your stool bulk up like potatoes, rice, bananas, etc. It might just be making a couple changes to your diet. Experience is the best teacher. [ more ]
you may have a touch of pouchitis. Usually a round of cipro or flagyl works great for that. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
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If you can find a pelvic pain physical therapist I encourage you to go to one. I am finding it helpful while I wait for the medical doctor who specializes in this. [ more ]
I just found out I had this! I've been getting nerve injections and doing acupuncture to help it, I just posted my story under General Discussion if you wanna take a look [ more ]
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J-Pouch ForumsHelp! Need advice now!
Dr Alkorashi is my main surgeon, Dr Stricker is the other surgeon who helped with the excision [ more ]
Who were your Kaiser surgeons in SF? Curious, as I am with Kaiser too, and my surgeon no longer does j-pouch (he heads up the bariatric surgery dept over here in Fremont/Hayward now). Always good to know some people... I had a great lapro general surgeon for an adrenalectomy a few years ago, but don't know if he's into colo-rectal. Jan [ more ]
I was not a very good candidate for a J pouch and they had a lot of trouble with the blood supply during surgery. I ended up with incontinence made worse by some pouchitis, continual butt burn was another lovely result. Any way, the Pouch was restricting my life so I first had it disconnected and then later excised. Adhesions can be a real problem for pouch removal and I had a lot of them. I had the surgery done in San Francisco at Kaiser they have two main colo-rectal surgeons that do this... [ more ]
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J-Pouch ForumsGeneral Discussion
Postponed until Tuesday.... [ more ]
Hey guys it sounds like the range of emotions we all go through with this surgery. I know when I had my ileostomy bag after battling colitis for 10 years it was such a relief to not have to experience the urgency and pain of having to go to the bathroom all the time. Personally I had a little OCD problem with mine because even the slightest amount of waste that got in there I was in the bathroom emptying it ha ha. The point I'm trying to make is I'm sure many people understand the ease and... [ more ]
CC - thanks for letting me know I'm not alone! Army wife - what a coincident about our surgery date. Best of luck to you! - Mark [ more ]
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J-Pouch ForumsGeneral Discussion
Interesting way to look at it. I always thought the opposite...that if it is not refrigerated, that it will lose some of the effect. Good to know that Align is a plus since it stays stable. [ more ]
Yes, as a matter of fact, that is one thing that makes it better than some of the refrigerated ones. Probiotics that require refrigeration are more likely to get damaged somewhere along the line if they are not stored properly. So being "shelf stable" is a plus as far as I am concerned. Sure makes it easier if you like to travel! Jan [ more ]
Hi. I've decided to give Align a try so have bought a couple months worth to start and will go from there. I have one question though...is it ok that Align is not a refrigerated probiotic? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Ugh, they are the WORST. Sorry you're dealing with it. If you are able to lying on your side can be a little more comfortable. It's normal to have a good amount of drainage in the first week or two (and drainage of mucus will continue until your takedown, you'll do that on the toilet) so don't worry about that. Wish I had better advice but honestly just try to distract yourself from it and let time pass... Watch movies, take naps, have visits from friends if possible. Just laying around... [ more ]
Anal drains are very uncomfortable and extremely akward, especially the first few days...but they are there for a reason and you need it to stay in until all of the drainage comes out...the pain may lessen over a few days once your body gets used to it but it will probably stay in for at least a week or more. Try basic pain meds like tylenol or advil if you are allowed to...other than that warm compresses or a heating pad may help you get some relief. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
This is a tremendous gift, Domenic. You make the world a better place. [ more ]
Thank you so much for your input. It turned out I am not a match for him, but we are doing the multi-way donation. So they are looking for the right matches now. Wish me luck! [ more ]
Your specific health is the primary issue as long as you don't have any of the contraindications listed here: http://www.livingdonorsonline....ontraindications.htm You can get by fine with one kidney, as the body has a LOT of redundancy in that area. It would not affect your j-pouch in any particular way and the kidney retrieval surgery is not in any area close to the pouch. Having a history of UC is a contraindication for bone marrow donation, but not blood or kidney donation. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsPouchitis
He was sure it is not chrons. After i started Mesamine i am having continuous pain below the stomach in the groin area. which decreases after motion. GI state it is due to inflammation. The retum is remove during last surgery. Do any one experience such pain, what is the cause and treatment? [ more ]
Did your doctor mention anything about the possibility of Crohn's disease? It sounds suspicious, especially since he told you to stop the antibiotics and start oral mesalamine. However, since you still have your rectum, perhaps it's not uncommon for patients in your situation to use oral mesalamine. If your current treatment regimen doesn't work, perhaps you need a course of steroids. [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks everyone. I guess I will find out and just hope for the best. I'm a nurse and on my feet a lot but luckily, bathroom access will be pretty easy. [ more ]
Well, it's not out of the realm of possibilities BUT there are chances that you won't be ready in two weeks. I could have gone back to work in two weeks if I was working at the time. It also depends on what kind of work you do. If you have a desk job with a near by bathroom then it's going to be much easier than if you are a person on their feet all day that's hard to be interrupted. [ more ]
I guess my concern would be if you had any post-op complications keeping you in the hospital, then two weeks would definitely not be enough (e.g. if you develop an ileus). Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Yes, I do, and appliance adhesive problems was a real worry for me. Luckily, I never had to find out (yet). Last time I had surgery (it was lapro), I blistered under the bandaids they used. Jan [ more ]
Jan, I don't expect that it will get better with colectomy tough I do hope so. I don't think it's "leaky gut" though I do believe in intestinal permiability but there are colonic bacteria which release histamine and dysiosis can cause too much to build up in the system apparently. And, DAO and other enzymes which are required for metabolizing histamine are also in the mucosa. Don't know what happens if you remove the colon and so all of the bacteria and some of the enzymes though? Since her... [ more ]
Idiopathic hives are very, very common, and can come and go in frequency/severity, so it is nearly impossible to nail down the direct cause. I can tell you I have had numerous cases of hives from sun exposure, sweating, etc, along with the usual stuff. Then years and years will go by with no problem at all. I am prone to eczema and contact dermatitis. It did not improve with colectomy. It could be related to UC in the fact that UC is autoimmune and many idiopathic skin disorders are also... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsWomen's Health & Pregnancy
I saw a regular OB for the first trimester, but sought him out because of his experience with 2 previous j-pouch patients. The hospital he was in closed down his office abruptly and I had to find a new doctor, so I went to a high-risk guy and was very glad I did. I felt I got the extra care my "different" pregnancy needed and he agreed with my suggestion that we have a colo-rectal surgeon consult on the C-section, which I was also glad about. [ more ]
I was the opposite - I had a high risk dr and was sooo glad I did as I had a near total obstruction during my first pregnancy and it was day to day if I might need surgery at 22 weeks. I kept the high risk dr for pregnancy 2 but had no problems. [ more ]
I had one - but then I was quite unwell the whole time with pouchitis that was not controlled and spinal cord issues. It's proboably not necessary but you do want an OB with some Jpouch experience. [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks for posting. People coming to read these boards do not hear enough good stories. Glad you are doing well! [ more ]
Welcome back, Smeanie. I am glad your post-jpouch life is good. Now if mother nature will stop hammering Texas and Oklahoma with tornados, that would be one less worry for you. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Another thing is the gut mind connection. There are books on it. Without our colons there are chemicals that are not getting to our brains that should be. I think I'm probably going to be on some kind of antidepressant for the rest of my life. I hope it might not be that way for a child as they are young and not fully developed, hopefully the body accommodates. I know they do not want to put children on these medications unless absolutely necessary. I don't know but this is something you may... [ more ]
I will also be able seeking a therapist. I have realized how much my thoughts and mental has changed since I've had the surgeries. I was the absolutely most positive easy going person you would ever know and after all the trauma my body has been through there's no question it is going to affect your mental status. There are days I just feel worthless and depressed for no reason and have extreme anxiety. I used to trick myself into thinking I was getting sick again because I kept having to go... [ more ]
I was lucky and found a good therapist on the second try. I've found the EMDR approach to treating it works well so you might want to look for someone that treats PTSD utilizing this method. The treatment still used the name but has moved on from using the eye therapy. For instance my therapist uses small stone like things I hold in my hands that buzz. I tell you this for when you look it up on line. You might also want to search for someone that has dealth with someone that has had or does... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsWomen's Health & Pregnancy
I had a scope at 6 months and even laser treatment but I had very severe bleeding. They offered me sedation but I refused and all was fine! Not unless desperate I would say. [ more ]
Hi Kathy, guess you will be seeing me more here again. So surprised to see you, I was looking around and didnt recognize anyone's name except Jan of course. Yes Jaime is a flight attendent now for Jet Blue here on the east coast. She left Alaska Air to return home. Glad to see old friends, you too Jan. [ more ]
Even when I still had my colon, they would not scope during pregnancy, not even a sigmoidoscopy without sedation. I was having UC flares during pregnancy too, but they just treated the disease without invasive scopes. Unless there is an urgent need I see no point in the risk. What GI is going to want to assume the risk of potentially disrupting a pregnancy just for a looky-loo? No doctor with brain cells to rub together. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Hi FQ, Congratulations... I think that it is great that you decided to get the abdomen fixed and that you are pleased with the outcome... Let us know how the healing progresses... Sharon [ more ]
hi everyone just wanted to give an update. my bandages are off and i love my new scars! they were revised much better than i even thought possible. my midline incision used to be wide and have staple marks. now it is a thin line and no staple marks. ostomy site is a very thin horizontal line and no caving in or crater look. the surgeon did a good job. my tummy feels really tight though and i wonder if i have more adhesions again? well, it's done so i guess that's that. overall, i feel much... [ more ]
it's funny, i feel the exact opposite about my incision scars. i wear my scars like a badge of honour, reminding me of what I have been through and came out stronger afterwards. natural tattoos in my mind. [ more ]
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J-Pouch ForumsGeneral Discussion
I experienced diarrhea (previous to my UC diagnosis, so obviously before the j pouch) on the Zoloft and changed to Wellbutrin. I am currently taking Prozac, with no issues, either (the change on this one was due to abnormal liver enzymes--the doctor thought that medicine may be the case, which it wasn't). I didn't have the same side effects with that one. I would make sure to discuss the issue with your doctor, they should be willing to work with you on finding one that works for you,... [ more ]
I was prescribed Cymbalta for severe nerve pain. This medication, apparently, has been used as an anti-depressant. Well, even at very low doses, Cymbalta gave me nausea which had me feeling the need to throw up even when my stomach was empty. I stuck with the medication for several months but decided I'd rather not go through this nausea on a daily basis. So, I stopped taking it. No more nausea. [ more ]
Hi Pookie- I have had a hard time finding the right antidepressant before too. The SSRI's (like Zoloft) did not work for me. They primarily deal with serotonin. I currently take Wellbutrin which is a different kind of class on antidepressants that work with Dopamine and Norepinephrine. I am not sure if the side effects have to deal with which neurotransmitter the med works with, but the serotonin ones make me like a zombie who poops a lot! Wellbutin has been great, the only side effect I get... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
My first go round to try to get pregnant didn't take long... started trying in January, pregnant by September (I was 30 years old). I had a scheduled C section, approved by my surgeon. I know women have delivered vaginally with a J pouch, but I was just too nervous about that creating any continence issues, or tearing into that area, or whatever. I had no issues with that. I read a study that said that 52% of women after J pouch surgery have issues with conceiving. A year after my daughter,... [ more ]
Your body should handle pregnancy just fine. Some women have difficulty getting pregnant, but your pregnancy shouldn't be all that different than someone with a colon. Just a few more bathroom trips especially in the 3rd trimester. If you are ready, I would suggest starting earlier. It could take you awhile, and women's fertility take a drop at 29-30 and then again mid 30s. Good luck to you! [ more ]
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J-Pouch ForumsGeneral Discussion
You figure with the Cleveland Clinic being one of the biggest and best hospitals in the world, that marijuana would be tried there. I live right down the street and would love for this to happen. Especially of how strict they are with giving pain meds now, why not go this route? [ more ]
Ingesting sounds better than smoking. Even better if I could measure a certain amount in my daily fruit smoothie. [ more ]
Smoking is the most ineffective method if your aim is therapeutic. Oil, eating and even juicing fresh leaves are more promising. [ more ]
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J-Pouch ForumsGeneral Discussion
My first try failed as well, due to a leak. My doctor could not find where it was coming from, even after several pouchagrams. He finally tried injecting hydrogen peroxide and found it in a place one rarely sees one. He did a surgical repair, and my second take down was successful. I won't go into the rest of it, but at least the second one worked! Good luck! [ more ]
thank you for all the encouragement and private messsage. Ill let you know what happens [ more ]
I sent you a private message. [ more ]
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Founder, Creative Director & Web Master
William J. Johnson
bjohnson@j-pouch.org
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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Jan Dollar R.N.
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