J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
Thanks, Jan. I think it was a perianal abscess. My doctor looked for a fistula, but said he couldn't find evidence of one. Hope the abscess (and fistula) stay away. The doctor said that the work Dr. Shen did on the sinustomomy was on my right side, the abscess was on my left side. I feel like a new man and hope we can stabilize! I also have a follow-up pouchoscopy with Dr. Shen for next week that I may want to move back another week or two to let everything heal up. [ more ]
Sounds like a perianal or perirectal abscess. It is impossible to tell if this was connected to your prior fistula or not without knowing how your fistula sinus was directed. Sometimes they have multiple "fingers" to them. Also, perianal and perirectal abscesses can be recurrent. Good questions to ask your surgeon and Dr. Shen. Maybe he could do a fistuogram to see where it goes. But, hopefully, incision and drainage is all you need for this one, and they do not connect. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks for sharing Dawn! I too have had about 20+ surgeries for a RV Fistula - now have a K-Pouch so no rectum but still have the fista. Humia did close it for a few months, but then I developed an abscess, it open up again as well as 2 new fistulas in my midline incision. I'm done with surgeries and want to try the chamber as two fistulas are new and hopefully more responsive. Thanks again - I'm glad I have a place to turn to - because the doctors are never as invested in our health as we are! [ more ]
I have a surgical fistula caused by the original surgeon while creating my jpouch. I have had over 30 surgeries to repair the fistula. After one of the surgeries I went to a chamber 15 or 20 times over the course of a summer. This was the summer of 2009. It is still not healed. [ more ]
Hi Dawn - Can you elaborate on what happened? I am planning on doing this as I've done research that this has a fairly high success rate of closing fistulas. I have 2 new fistulas that developed in my mid-line due to an abscess. I was told that the "newer" the fistula the easier it is to heal. I'd be interested in hearing your story... [ more ]
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J-Pouch ForumsGeneral Discussion
Hi Molly, What you're feeling and saying seems very normal, and you came to the right place to hear from others! Everyone's experience is entirely different. My jpouch experience has been quite positive. You sound like you've been deealing with a lot of problems. My surgeon told me his goal is to provide his patients with a better quality of life in the long run. So in my opinion they wouldn;t be offering you this choice if they knew you would be in worse shape. I had my colon removed 3... [ more ]
You are fortunate to have a good support system, even though they may not comprehend all that you are going through. The above posts present some very helpful information; in particular, being sure that there are no realistic medical options to surgery and being in relatively good shape before having surgery. I was about your age when I was diagnosed with FAP, so my colon had to go. Fortunately, I learned that Mayo Clinic was performing the J pouch procedure, and I was one of the first to... [ more ]
Hi Molly, My experience and sentiments sounds similar to Salmak. I would like to add that I am temporarily on an antidepressant. It seems to take the edge off of my "new normal". I never thought I would be on that type of medication but I am grateful my family doctor suggested it. When I am ready I will wean myself off of it. I used to refer to my "medical problems" but now I call it my "medical adventures". Hey, who doesn't like an adventure! Best wishes, Dorothy [ more ]
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J-Pouch ForumsGeneral Discussion
Milk of Magnesium, have you tried that? I was warned because, I take magnesium supplements that they might contribute to loose BM's, as the surgeon used the example of Milk of Magnesium. Or you might want to take magnesium supplements, I would think they would cost more and be harder to gage the dosage. I don't know if this is a good idea for the long run.... [ more ]
Since you've had strictures in the past, it might be worthwhile to see your GI if you haven't seen him recently, to rule out a recurrence (though I understand that your situation may make it harder to see a doctor). You don't tolerate fiber products so no point recommending those. Sometimes pouch patients are prescribed tap-water enemas for fecal stasis, which can help clear out the pouch and and reduce straining. This is something you can do at home - buy a fleet enema kit, empty out the... [ more ]
Thanks so much for your replies thus far. I apologize for not responding sooner--this issue keeps me busier than I'd like to be. Strictures have been found in the past and dilated, with no difference in feeling nor BMs afterward. Stool softeners like generic Colace have been tried with little difference, but I'm experimenting with them (along with Lactulose) again. Epsom salts are the only thing that empty me effectively, but then my leakage is far worse throughout the night, and quite... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Rhenke explained to me this is usually the issue, especially with my disease that shrinks it. I made him change the paperwork I signed. Basically said if surgery can't be done due to that (since he didn't have to remove anything to be able to tell, just cut me open), than to sew me back up with nothing removed and def no ileostomy. He argued a lot but it is my body. Short Gut Syndrome is usually if you have had too much small bowel removed and some stomach. [ more ]
I would suspect that it was 6 inches short by way of mesenteric reach, not bowel length. Hopefully, 1-2cm of rectal cuff will be enough. It definitely is not enough for a double staple technique, but perhaps for a hand sewn anastomosis. Not all surgeons are trained in that procedure, so you will need a surgeon who is experienced with that. You have the right idea of getting opinions of other surgeons. It may be a good idea to do this sooner rather than later, since you'll need to get your... [ more ]
I had some small intestine removed, I originally went in for a j pouch but the surgeon said that I was about 6 inches short to form a pouch. So he gave me an end ile. I still have 1-2cm of my anal canal because he said that he left it just in case I want to try again. He said I should wait at least a year for the next try. This time I am considering going to the Cleveland Clinic in Weston. Or if they say its not a possibility then see Dr. Rehnke at the Palms in St. Petersburg. I dont think... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
kanga roe....those sound interesting and I never tried them??.. I'm going to check those out...thanks!! and no problem pdxdavid... next time you're on amazon.com cough up an extra 10 bucks and pick up some shea butter you will be very very very surprised..... [ more ]
Mike, I tried the cold cream. It works! Thanks for the tip! Before I used soap and one of those coarse crunchy plastic net things. It got the paste off, but it was like using sand paper. [ more ]
Yes, for me it isn't a substitute for barrier product. My go to barrier is ILEX...amazing !! ILEX puts a barrier of almost dried rubber?? against your skin. I have tried calmoseptine and destin and butt cream etc..and I use them at times. but for me they are more messy and creamy than protective. I like that ILEX actually coats and dries on your skin allowing output to just pass thru relatively pain-free. Yes, the noxema in shower will help clean off barrier creams and mess etc...and it... [ more ]
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J-Pouch ForumsGeneral Discussion
I prefer propofol myself. Blink you're out... Blink you're awake, procedure done, and you are ready to get dressed and leave with your driver. I've had my share of office scopes and milder sedatives. The pain is too much. And the psychological trauma is over the top...for the doctor, not me. [ more ]
My scope I was out but it was more of the twilight concoction of medication. Either way I was out! [ more ]
There is nothing wrong with propofol, when used appropriately and with constant monitoring. The problem in Michael Jackson's case, it was used inappropriately and without proper monitoring. Night and Day difference. IV fentanyl without monitoring can kill you too. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Thank you for your comments! I too am at the point where I am ready to make an appt to see what needs to be done and also told myself I would give 30 days. [ more ]
I was having similar problems w chronic pouchitis and hospitalizations when I changed my diet as a last ditch effort. It was hard at first but I told myself for 30 days I would follow the diet to a T and if I was still sick id stop and make an appt w my GI doctor and do what he thought I should. Needless to say it's been almost a year and no pouchitis and I never did schedule that appointment bc I didn't need it!! I follow a modified Paleo. No dairy, no eggs,no sugar(except the natural sugar... [ more ]
I've read the SCD book and have been practicing some of what it preaches. I have cut waaay back on carbs/sugars, and make/eat the 24 hr. yogurt. I'm not a fanatic about it, but I try my best. I've also read "The Grain Brain" and have been working on cutting out glutens - not just for intestinal health, but brain health as well. My jpouch is doing much better since I've cut back on the carbs/sugars. I gotta think that has something to do with it - it appears that there are others out here who... [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks, I will look into it! [ more ]
Who are you talking to Judy? not sure anyone mentioned not having health care. [ more ]
I see Dr. Gary Lichtenstein at the University of Pennsylvania Hospital. If you are interested in seeing him you may want to make an appointment now since it may take awhile to schedule an appt. Good luck with your move. [ more ]
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J-Pouch ForumsGeneral Discussion
Thank you so much Jan. I go to the GI dr. next Tuesday. I think I am also going to find out if I have adhesion's that are causing other issues I have posted on here also. Thanks Again, [ more ]
Sounds like you are having spasms. Since the oral antispasmodics are not helping anymore, ask about B&O suppositories (belladonna and opium). Jan [ more ]
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J-Pouch ForumsGeneral Discussion
With those symptoms, I would probably stop the Cipro. Could be coincidence, but that radiating pain soon after starting it sounds too much like liver/gallbladder/pancreas to me. Could be just gastritis, like your doc said. But, I would stop the drug until the labs are in. Jan [ more ]
Cipro doesn't usually give people bellyaches, but it sure sounds like it's giving you one. You might try taking it with food, as long as it's not dairy. [ more ]
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J-Pouch ForumsGeneral Discussion
A pain pump is a hockey-puck-sized pump implanted under the skin that automatically, at timed intervals, delivers a small dose of opiate pain killers directly to the spine (or other area - in my case spine to act as a block). It also has a manual "give me an extra dose now" option for when the scheduled dose does not do the trick. The medication is delivered by thin tube to the site, and is periodically refilled as needed through injection into the reservoir. Block injections works for some... [ more ]
I haven't had any experience but am very interested in hearing more about it and in your outcome. I am in chronic pain as well and have been taking hydrocodone daily since my take down almost 3 years ago. It doesn't get rid of all of the pain. I take Loperamide (prescription Imodium) and Dicyclomine only when I have to as it blurs my vision. (I'd be pain free if I didn't eat anything, have nothing in the pipeline...) I don't understand how a pain pump works as I'm thinking of the kind we... [ more ]
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J-Pouch ForumsGeneral Discussion
thanks! why "amazing?" [ more ]
I think Dr. Varma is the surgeon. An amazing GI doc at UCSF is Dr. Uma Mehadevan. She is wonderful! Tell her I sent you! Best of luck, Jilly [ more ]
Read Jilly's post. I think she's seeing Medehaven (sp?) and raves about her. She's at UCSF. sue [ more ]
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J-Pouch ForumsGeneral Discussion
My doctor wrote a scrip for a compounding pharmacy mix calmoseptine with an anti fungal cream just to ease my paranoia about it because at takedown I had a horrible fungal infection around my stoma and was terrified it would migrate. He said not to be surprised if the compounding pharmacy said no, but they did it. I never did have a fungal infection in the rectal area, but I did have a horrible rash from using soap to wash after every BM. You aren't using soap, are you? [ more ]
Have you tried Zeasorb powder? http://www.zeasorb.com/ It is pretty good for healing/preventing fungal infections, and keeps things dry. I even use it on top of the creams, to keep them from rubbing off or my underwear from sticking to it. Jan [ more ]
There's a fungus amungus Have the same problem! ...no solutions yet! I have tried the antifungal creams which absolutely work! but as soon as i stop using it, the red itchy crack comes back! It is also improved with domoboro soaks in a sitz bath, but it just comes back. Keep me updated... [ more ]
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J-Pouch ForumsGeneral Discussion
I eat yogurt everyday, any kind, and a fiber bar daily. I eat string cheese and bananas daily also for the most part. Basically, I eat almost everything, except for gluten. I have a sensitivity to it, and my gut stays more happy without it . [ more ]
How about cheese? [ more ]
Baked chicken with the skin removed and mashed potatoes with gravy is my favorite dinner. I look forward to my protein fruit smoothie each morning for breakfast. I love Greek yogurt, toasted English muffins with melted cheese, whole wheat ritz crackers, cheese, honey graham crackers, rice krispie treats, and chex mix. I've replaced cookies with the graham crackers and while I know they and the rice krispie treats have sugar in them they agree with me and satisfy my sweet tooth, plus the... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
I developed Crohn's right before my takedown, a little over 10 years ago. Remicade cleared up the fistulas that were starting to form in my pouch. My first five years (although I did not realize at the time) went pretty well, with occasional grouchy pouch issues. But scar tissue, stricture at the anastomosis, an R-V fistula, and then fissures ... the second five years have been a downhill ride. Except that my abdomen is a sea of adhesions and disfigurement from scar tissue, and the fact that... [ more ]
Thanks for sharing your thoughts and knowledge with me everyone. I still haven't decided if I want the j-pouch-operation, but it's been good to hear your stories and meanings. [ more ]
Agreed, Scott. If one has Crohn's outside of the rectal/pouch area, having an ostomy will do little if nothing to prevent any bad behavior in those areas. In my particular case, if I do indeed have Crohn's, it is probably limited to the area where the fistula developed (the ATZ). Perianal disease is easy to recognize and does not bode well for jpouches. Elmer, n/a are my initials. I was probably feeling surly when I changed my username and added the "/" for no real reason! [ more ]
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J-Pouch ForumsGeneral Discussion
I am sorry to hear of the complications. Hopefully things will improve soon. [ more ]
Sorry to hear of your problems Laurie. I hope you are improving. [ more ]
Seems like things are never simple or easy with us, Laurie. Sorry you are having a tough time post op. I also had a lot of pain with lapro surgery. The only difference I noticed was the smaller incisions, and no big wound infection. No matter hw net and tidy it is on the outside, it is what goes on inside that really matters. You had some big fibroids! I agree that a CT may be in order to see what is causing your new pain. Hopefully it is not another hematoma, as they can take a long while... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
When I had a colon I went 3 times a day. When I had cancer and got constipated from it I hardly went, maybe weekly. Then I got a scoped. When something isn't right, get checked... I was always told 3 is a pretty normal, healthy schedule if you eat right and work out, etc. Now if I ate like crap and shoved greasy fried foods and sugar down into my gut I would go 6 times. I ate pretty clean before I got diagnosed with FAP though so 3 was the average. With a BCIR, I go when it bothers me since... [ more ]
So how does one know if a prebiotic only promotes the growth of desirable bacteria and not undesirable bacteria too? [ more ]
This is exactly what is causing the bacterial overgrowth in my case. My GI calls it "backwash stool." [ more ]
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J-Pouch ForumsGeneral Discussion
Nroley, How are you doing now? I've had my J-Pouch 14 years and for the first time have a stricture. The opening of mine is about 1 cm or so. As much as I don't want to have anything done, I also realize I can't leave it be. I also don't want to go to a bag...I've had very little issue with the pouch over the years. Just wondering how you're doing a couple of weeks out & if you see/feel a big difference. Hope you're doing well! [ more ]
My takedown was almost 10 years ago [ more ]
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J-Pouch ForumsGeneral Discussion
You're friends will be envious! You will have the best toilet in the neighborhood. Enjoy! Sue [ more ]
Actually having a Bidet is luxury. Very wealthy in many countries who have them are usually talked about in a good way. I always grew up in a classy household with them and thought nothing of it. Would have the toilet then a bidet next to it. [ more ]
What a wonderful gift! How about a sign "Beware of Bidet". [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks Sharon, I still have my usual everyday abdominal pains but haven't had any partial blockages for a few weeks. I've been limiting my diet and gradually adding back in more solid foods. So far so good. I still am not interested in meat other than baked chicken or sandwich meats. That's fine as I get plenty of protein from my plant based protein shakes and Greek yogurt. Now if I would just stay away from the chocolate ice cream.... my vice, lol. I'm going to find out how large the mesh... [ more ]
TE, No news? How are you feeling? How is the pain level? Are you doing any better? Sharon [ more ]
My problem exactly Sharon. I had incisional hernia surgery and it was a "big" hernia. He opened up my entire incision and I have a lot of mesh. My father has an abdomen of broken mesh from his open heart surgery so I'm afraid to massage too hard. He'd had hernia surgery prior to his heart surgery and the mesh got messed up during the subsequent surgery. I do apply pressure and massage to the affected area(s) myself when I'm experiencing partial blockages but don't venture to the rest of my ... [ more ]
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J-Pouch ForumsGeneral Discussion
Brer Rabbit unsulphered black strap molasses is my choice. http://www.foodfacts.com/Nutri...asses-12-fl-oz/67831 [ more ]
I use Grandma's unsulphured molasses - Robust. The label says a one teaspoon serving contains 8% of the daily requirement for iron. There were a few different brands of molasses on the grocer's shelf that had iron contents of 2 to 4%. Read the label carefully. [ more ]
Thanks for this - I will try it! Oddly enough I found this post when searching FODMAP, but I actually have been struggling with Aenemia for awhile and after infusions am still not keeping my iron up. My understanding from my GI is that with the FODMAP you can try introducing foods, so some people may be OK with blackstrap molasses and some may not. Good luck to you all. And if you are still on here - is there a brand of blackstrap molasses you'd recommend? [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks Jess, I just figured out how to search in here! I didn't know I could just search a specific topic instead of having to read each posting. Thanks again [ more ]
If you do a search about travel here you should find a wealth of information. Many folks travel not only in the continental US but all over the world and seem to be fine. Happy travels! [ more ]
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J-Pouch ForumsGeneral Discussion
Thank you so much Jan. You are truly amazing. I never thought of some of those things. I have an appt with GI in November. And I made an appt with Surgeon for January 2. Maybe I can get in sooner. Thanks again, [ more ]
First of all, searching past posts won't tell you when the time is right for you to give up on your pouch, so you were right to make a fresh post. It is an individual decision. The only common thread I've seen is that you should wait for a year minimum, to be sure you've waited out a reasonable period. To me, this sounds like intermittent partial obstructions. It is typical that diet has little effect in these sorts of instances. I think you've said your recent scope was normal. Correct me... [ more ]
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J-Pouch ForumsGeneral Discussion
I had UC, and J pouch surgery years ago, and I do not carry abnormal inflammatory markers. [ more ]
Actually, I don't think that is necessarily true as a general rule. Having a UC diagnosis should not mean that any injury or illness you may get would be worse or with a higher level of inflammation. I heal normally from an injury or other surgeries. I don't even believe that a UC diagnosis would mean that you should always have elevated inflammatory markers in your blood tests. If that were true, there would be little value in doing those tests. If you are in remission, with nothing going... [ more ]
I believe the answer is yes and the simple explanation for it is that the UC is gone, but the underlying autoimmune disorder which manifested in UC is not gone. I have inflammation in the pouch, I tend to swell like crazy whenever I am surgeried, and my skin is extremely sensitive and gets irritated/inflammed more than is normal. The inflammatory response is merely a manifestion of the autoimmune disorder. [ more ]
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J-Pouch ForumsGeneral Discussion
http://thefecaltransplantfoundation.org/?page_id=38 that is a list and there is a new trial going for Chron's and FMT on the list [ more ]
I did about 5 hours of research on fecal transplants as I believe I really need one with all my terrible bacteria that has been uncovered from testing. It is only approved in the US for c diff but there is a clinical trial going on for crohns but we don't qualify because of J pouches or in my case because of cancer also. There is a great web site for how to do on one's own, and suggestions by doctors who may aid you. www.thepowerofpoop . [ more ]
I am very interested in this as my bacteria is extremely bad. I will call the MD in Canada to see if I am a candidate even though I don't have c diff. Will let you know if I come up with anything. Please give us updates if someone finds out more. [ more ]
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J-Pouch ForumsGeneral Discussion
❤️
Evening Jan You are welcome.I know alot of research is ongoing and when I see some results coming out makes my day. We need to know why and how in order to recieve proper care .I have endometriosis and the medication I took years ago did nothing for me .Random medication to me are a waste after my dealings with as I said endometriosis Try this link http://www.sciencedaily.com/re.../11/131105132031.htm I do think all goes haywire in the gut and that is where all autoimmune processes start. [ more ]
Cassie, that link did not work for me, but I found the article on a Google search. For a long time, there has been talk/research regarding a link between various gut bacteria and different forms of inflammatory arthritis, including ankylosing spondylitis and related diseases. However, this report is different. This one talks about Prevotella copri. http://www.sciencedaily.com/re.../11/131105132031.htm Most of the other studies I've looked at talked about Klebsiella as the associated... [ more ]
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J-Pouch ForumsGeneral Discussion
Just to be sure: you stopped all bowel slowers and opiate pain meds, right? [ more ]
It did but they didnt seem to think it was an issue. They were more concerned with obstruction which wasnt seen. [ more ]
Yes, it is fine. Not sure it will do much though, since you do not have the same set up as a rectum. It is a stimulant laxative and without the rectal musculature to stimulate, not much may happen. Even a simple tap water enema will likely give you better results. You are probably better off with taking oral stool softeners (colace) or gentle laxatives like Miralax. Did the CT show that your pouch was full of stool? Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Thank you so much, I needed it for a poucher on another site. [ more ]
Yep, Lion has it covered. The only thing I can add is regarding insurance coverage. Yes, it is true that it will only be covered as a "medical food" if you get the DS (prescription only) form. It may or may not be on your plan's formulary. If it isn't, you may still get covered as long as your doctor orders it with exceptions checked to allow for non-formulary coverage. But, with some plans, there are no exceptions and if it is not on the formulary, then no dice, no matter how many hoops you... [ more ]
VSL #3 DS (double strength). Make sure they know specifically that you're looking for the DS. Its national drug code (NDC) is 54482093001. Many times people have been told it isn't covered because their insurance rep or pharmacist is looking at the OTC variety in their system. If you call your pharmacist and ask them to look up the NDC they should be able to tell you quicker than the insurance company. Some insurance covers it, others don't. [ more ]
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J-Pouch ForumsGeneral Discussion
Spooky, welcome to the club! Two of my pancreatitis attacks were due to pentasa and mesalamine. Both share some ingredients and have a small chance of causing pancreatitis. I triggered on both. Sorry you're in the club, though. [ more ]
Just be sure to take it with Vitamin C or acid foods (like orange juice) to enhance absorption. iron salts are nowhere as bioavailable as heme iron (iron associated with blood- like meats). Jan [ more ]
Yes, I am taking iron. I've actually been taking it for a number of years, but I've increased the dosage since my hemoglobin dropped. [ more ]
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J-Pouch ForumsGeneral Discussion
Your hiatal hernia may be expanding (up higher in your chest), putting more downward pressure on your diaphragm. Other things to think about is an inflamed gallbladder, but I'd expect more upper GI symptoms. I get a similar symptom when I have rib inflammation, but I have known inflammatory arthritis. This is "out there," but there is also the possibility of pleural effusion, which could cause that symptom. Lots of causes for it, but a simple chest x-ray could rule it out or in. Again, only... [ more ]
CT, thank you for your reply... yes, I will be speaking with him about it. And Jan, you guessed it, I do have a hiatal hernia. The discomfort is typically a bit higher up, like, right at the breast bone, but this is lower... like something is putting pressure on my stomach. Reminds me of when our son was little and would sit on my tummy, etc. I wonder if the hernia can move itself downward? I am very uncomfortable wearing a bra or any type of top that is snug in the chest or stomach... all... [ more ]
Unless you have a respiratory disorder, the only thing I can think of is that you have developed a hiatal hernia over time. This is really common and has nothing to do with pouchitis and/or your j-pouch. I agree that you need to talk to your doctor about this, as it is not normal. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Hello bratcat - until you hear from jpouchers on this site who've had experience with fistula surgery, you could also check out http://www.ibdsupport.org/foru.../64-fistula-support/ . I have only had 1 fistula (pouch-vaginal) and have had a draining seton placed. It was done during an EUA, and I was back to work in a couple days. So sorry you're going through this. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
The closest thing to the GI effect of the strong pain meds without the usual side effects is Lomotil. If it helps you feel better you can use it for a very long time with very low risk. [ more ]
Thanks all! I had a c section 10 days ago and notice when I take the pain meds my pouch is much happier so I feel it may just be that my motility is in hyper speed. Prior to my surgeries I was taking belladonna for rapid digestion so I am not sure if this is just popping back up now. I had my takedown in December of last year so I am 11 months out. I am be contacting both my pcp and surgeons offices in the morning to see what they think. Hoping they can get me situated fast. [ more ]
My husband now goes to a gastroenterologist. [ more ]
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J-Pouch ForumsGeneral Discussion
Hello: I had UC and waited as long as possible to have the surgery. I tried everything possible to keep from having it. By the time I had the surgery, I had lost over half of my blood supply and needed a transfusion. Then take 48 pills a day and still the bleeding continued. I was in a very dangerous spot, but the surgery was the best decision I made!!! It SUCKED getting thru it, but I have had only one complication since. It is the way to go. I have been healthy ever since my doctors were... [ more ]
While I am still trying to work out J-Pouch kinks after 3 years, I remember how tough my life was with UC! My first thought after feeling reasonably well after my cancerous colon was removed was that an ileostomy added significantly to my quality of life. Of course, a healthy/happy J-Pouch is a wonderful advancement. [ more ]
My last flare lasted 3 months and on steroids the whole time (I am allergic to mesalmine that is in all meds). Never got a chance to try remicade. First time I went to the ER because of the constant pain and on the toilet constantly, the ER docs told me I was “constipated” and sent me home. I refused to go back to the ER and stayed in bed for an entire month. After 30 days, I finally threw in the towel and asked my friend to take me back to the hospital. I was finally admitted, but not for... [ more ]
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J-Pouch ForumsGeneral Discussion
Hi Manny! For me, I know that if I am really tired, that is when I have some trouble with leakage at night. This, for me, is my clue that I have pushed my body too far. For me, more rest helps alot.Sometimes for me, with three kids, it can be very easy to go,go,go even when my body gets tired and says no,no,no. I used to go into dumping in the beginning when I was tired, now it is more night time leakage. Everyone is different. Hang in there because the beginning is so tough. I'm guessing... [ more ]
Manny - Keep us posted if you figure this one out. [ more ]
Everyone's most hated reply: "Sometimes it just takes time." Remember, it can take up to a year for pouch adaptation to occur, and if there was any trauma to the sphincters during surgery (prolonged dilation can cause trauma and it varies from person to person), those nerves can also take a year to repair. So, of course, do what you can in regard to diet, etc., but often it is more about elapsed time than anything else. This is especially true of nocturnal leakage. The sphincters naturally... [ more ]
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J-Pouch ForumsGeneral Discussion
I'm considering aspirin desensitization, but I'm concerned about the daily aspirin dose that I believe lasts forever after that procedure. I know aspirin has risks, but does anyone know if it presents any additional risks specific to J-pouches or IBD? If you can point to an authoritative source I'd be grateful. [ more ]
I've been allergic to aspirin for decades, but it never affected my ability to tolerate 5-ASA meds. I guess they're just different. [ more ]
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J-Pouch ForumsGeneral Discussion
Not sure, just an interpretation of my blood work by my chiro. All other blood counts came back fine, just low triglycerides at 53. But I think some drs would think that's normal. I did work out before the draw which I understand can drop your triglycerides. I'm taking these digestive enzymes for a few months then will get retested. We'll see..... [ more ]
Regarding malabsorption and its relation to having no colon....I thought the colon's function was to absorb water and that all nutrients, etc. were absorbed by the small intestine which, on down the road after our J-pouch surgery, becomes such that it takes over some of the function our colon served....when we had one! Anyone????? [ more ]
Mine will be 25 next March. Knock on wood, no issues for me but a recent blood test showed me having low triglycerides so my dr thinks I might have malabsorption issues. Wouldn't be surprising with no colon! I'm currently on a digestive enzyme to see if it helps. We are a small group so it's great to see others with long term pouches. I hope you are able to get your surgery and feel better soon. [ more ]
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J-Pouch ForumsGeneral Discussion
Tumeric is even better in food! I cook with it constantly...it mixes very well with cilantro and garlic as a marinade...just cover a meat/Fish or Fowel with it and marinate with a few drops of olive oil or balsamic vinager and then cook or grill...I get at least 1tsp a day that way...makes for great sauces for rice or pasta too. Sharon [ more ]
I juice 3x a week. Current fav recipe is dandelion greens, carrot, cucumber, kale, apple, lemon, beet, celery. Also, turmeric is good for decreasing inflammation. You can get it in a pill form. [ more ]
Skadett: going to Cleveland Clinic in 2 weeks because docs in Canada cannot find it. Im having same issues as you. Can i contact you by phone to discuss? Please PM me. Thanks [ more ]
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J-Pouch ForumsGeneral Discussion
My mom was like that for awhile when I was a kid then she stopped forming big bruises. Maybe hormone related in her case since she is now in her 50s. Do you get more bruises when you have your period? Most vitamins and nutrients are absorbed in the small intestine not the colon. The colon's job is to absorb water [ more ]
If this is the only time you've developed bigger bruises than you expected then you're probably just fine. Folks with coagulation problems will have more than one episode of bruising, and tend to have unexplained bruising. Yours is explained by pride (just a little joke) and banging your leg on a fence. [ more ]
Hi Mads, First off, how are you doing and how is your pouch doing for you? How is life in highschool going? Yes, I bruise like no one else I know...I just consider it normal in my life...a bruise is just bleeding under the skin (if you pierced the skin then it would bleed out)and I have always been a 'bleeder'...it is partially the NSAIDs that I take (anti-inflamatory meds for joint/muscle pain) plus a real condition...I have D'heller's-Danlos. When I was a kid ( 15-16) they did all sorts of... [ more ]
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J-Pouch ForumsGeneral Discussion
I've had 2 abscesses and don't have Chron's. Mine were not in the gi tract though, grew where rectum was removed. My friend had a fistula and then they said Chron's but turned out she had bad c.diff! They scoped her and saw no evidence of Chron's so they are still on the fence if she has CD or UC. Don't let doctors treat you with no scope and just hand out meds. I let some idiot do that to me for a year and I got c.diff from all the antibiotic usage for something I never had... [ more ]
Hey all yes I went to see the GI and he woul like me to start Humira. The doc that prescribed the Cipro told me that as long as I take Flagyl with it the c-diff won't reoccur :/ I have been taking it so hopefully I didn't mess up there! No one still has not done a scope or any tests to confirm that it is actually chrohns. They are just going off the basis that I have recurring fistulas and abscesses. The GI did say that it is not certain I have chrohns but since I am having the above stated... [ more ]
love that Vanessa. I've been firing some of mine too! People need to remember the docs are working for you, no different than an auto mechanic, a hair dresser, or a contractor. If they aren't doing their job.. get rid of them. And find someone that will do the work properly. After all.. this is your health! a bit more important than a bathroom renovation, car fix, or nice hairstyle. [ more ]
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J-Pouch ForumsGeneral Discussion
Hi, Well still having the gas issues. Lately evry time I use the bathroom its a whole lot of gas followed by loose stools. No,I am not eating anything crazy although I really want to but I know its not worth it. Although, I hope that someday I dont have to worry what I put in my mouth! What is going on? I am so frustrated with the whole thing. I am so tired of not feeling good all of the time. I maybe get one day out of the week when wow, I feel normal! I know this is TMI but lately when I... [ more ]
I never could take fiber or antidiarrheals, because they make things too thick for me, and harder to push out. When I had my outlet narrowing, I was trapping gas like crazy, and felt somewhat as you're describing. It was the worst. Only way I could get it out was to lie on my back with my knees up to my ears. Awful. I'd have horrific pressure, constant needs to *try* to get stuff out, and not much would work. Maybe TMI, but sitting in a hot sitz bath sometimes would relax me enough to push... [ more ]
I also feel like I have to go to the bathroom and nothing as much as need it too nothing comes out I am really nervous and afraid too LJK [ more ]
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J-Pouch ForumsGeneral Discussion
I had chronic pouchitis until I started taking it. I take it in loose form with a full glass of water about three times per day. I don't know if it is the fact that it helps to empty me or some other reason why I stopped getting pouchitis after I started taking it, but whatever the reason I'm so glad I started. [ more ]
Jess, go to Vitamin Shop and get Psyllium Powder. I take two table spoons and one table spoon Citricul twice daily. Citricul contains methylcellulose which is also bulking. I don't recommend this much at first but that what it takes to make my stools firms. I have chronic diarrhea and this is the only thing that helps. [ more ]
I'm with Scott in that I liked the biscuits but did not care for the sugar, so switched to the powder form - or thought I did. Turns out it was wheat dextrin in a very similar looking container. Thought I would give it a try. Fortunately it appears to work just fine. I have also been using a product called metacleanse. It is psyllium with flax and bentonite clay. It works quite well too for bulking. I'm not positive, but I think it may also be helping with my pouchitis as I have not needed... [ 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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