J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Jan, thank you for all your knowledgeable information. Yes, we have an appt with urologist. Canasa did not help him, however hydrocortisone does. His PSA levels for the past two years fluctuate drastically. Definitely cause for concern to us. Again, thanks for input. Rachelraven and CTBarrister, thank you for you input as well. Very scary PSA levels. My husband has no signs or symptoms. Guess he'll have to have the biopsy and see what happens. Thanks [ more ]
I have a history of prostate cancer in the males in my family and my PSA is checked every year. In the past 5 years my PSA has fluctuated between 1.3 and 1.6 and my last 4 readings were either 1.3 or 1.4. This despite having chronic inflammation in the pouch and an inflamed prostate at one point about 5 years ago. Huge PSA fluctuations is what they look for to prompt a cancer screen biopsy. When my uncle had prostate cancer he was getting screened every 6 months due to his brother, my other... [ more ]
Nothing much to add except my dad had a completely normal PSA, and still had prostate cancer. Yes, PSAs are not 100%. [ more ]
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J-Pouch ForumsGeneral Discussion
Well not weird... Just ask weird questions! Well I am hoping for scar tissue but my ostomy was on my left side and the pain is on my right. It's always tender when pushed on a bit. I have been on Humira and Symponi... Not at the same time. Been a few years. Humira is actually easier for me to inject than the regular needle. I tend to go to deep or not deep enough. But that all is down the road a bit and will decide on later depending on the results. Thank you Jan. I will update next week... [ more ]
A pouch inlet stricture is fairly common, but anal stricture is more common. Above the pouch, the most common stricture site is at the ostomy site. Sort of makes sense, right? If there is a random stricture unrelated to surgery, then that is another indicator of Crohn's (I don't mean obstruction due to adhesions outside of the bowel, but a stricture within the bowel wall). A pouch scope may or may not be able to rule Crohn's in or out. There is a lot of gut beyond the scope. As to resuming... [ more ]
Thank you Jan... All hope is not lost. I get scoped next Thursday the 5th of February. I will post the results. I think I know the answer. If she suggests biologics I am going to try remicade. I was on it at the sickest point and it worked like a charm. I was taken off it because of hernia surgery and it didn't work after that. This has been about 8-10 years ago. I don't or won't know if it will work again. Come to find out two years ago I should have never stopped the infusions. But nothing... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Is the high frequency of BMs new, something you've had every day since the surgery, or something else? I've used Metamucil every day since my surgery 12 years ago. I have no idea if it would help you - perhaps not. I also use Lomotil (some folks prefer Imodium), and these will slow the gut and might reduce your frequency. [ more ]
I have had frequent BM earlier in my recovery from colon cancer, but I am on Lomotil (not sure if that's spelled correctly) now. My normal days are 3-4 BMs based on my intakes. [ more ]
I'm not taking any meds, supplements, exercise a few times a week. Have a positive since my surgery, I believe most issues are with diet, not sure the correct diet that will help. If I don't go to the bathroom, I'll have discomfort until I go [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Please check your settings. Not just the main settings page, but also go into notifications and look at those too. Bill has not seen a way to not have notifications as the default; at least not yet! Plus, there was that bug in the survey area that was spamming everyone. That was fixed, thank goodness! Jan [ more ]
it seems to have stopped for me, after I changed my notifications to "suspend all e-mail." it didn't happen right away, which is why I posted about this, but I haven't seen a new e-mail in a couple of hours. [ more ]
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J-Pouch ForumsGeneral Discussion
I also feel that Lomoti is safe. I also took it for five years . It slows your digestive system. The only time I take them if I am going to be out all day or I am having a problem but Scott is right it can make you constipated. Stay healthy Grace [ more ]
Lomotil is pretty safe if used as directed. As phonix2g wrote, it's possible to take too much and get yourself in some trouble from that. I don't use it all day, but I've been using it at bedtime for about 12 years. [ more ]
Hi. I took Lomotil for almost 2 years and never found it to be dangerous. If you take too much on a daily basis though you will experience alot of constipation which might actually increase your trips to the bathroom because you aren't able to get it all out in one trip. I've had that issue in the past and I can tell you I'd much rather have diarrhea than deal with constipation. I've always been scared to take Immodium on a regular basis because I've been hospitalized with a couple blockages... [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks for the information. I may try it one day, just have to build up enough will power first, and after speaking to my GI doctor. [ more ]
There is definitely a home method for it and my surgeon wanted me to try it out he even gave me a script to pick up a little handy dandy tool to help me out. NOOOOOOOO WAY DUDE. You can use a finger and then increase the amount of fingers as you go or you could use other things also but I would be very careful. The problem is you are not a professional and don't know if you are doing something a certain way that might actually harm you. If you decide this is the way you wanna go I would... [ more ]
I think I need to see my GI doctor about getting a dilation done, but my issue is that I don't have health insurance right now, and its probably going to cost me a few hundred dollars.... I wonder if there is a "home" method that can be used??? I know that after a scope, I feel great for months afterwards, but the pain and leakage slowly comes back. [ more ]
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J-Pouch ForumsHelp! Need advice now!
A friend at work had something similar to this happen to her in her teens. She did not have IBD. She outgrew it, and they never figured it out. It would be random, or at certain times of the day. Not that I'm implying the issue is nothing, just that I knew a non-IBDer with something oddly similar. [ more ]
I have recently have frequent vomiting normally after meals. It sounds like pouchitis or obstructions. Try drinking clear liquids for a day and note the changes, visit the dr. to share the results. [ more ]
Sure sounds like a high obstruction, adhesion based, since everything is coming up negative. I have periodic obstructive symptoms (but no vomiting). My GI has placed a standing x-ray order for me to go in immediately when I am symptomatic for a film while it is ongoing. Once the moment has passed, there is nothing to see. That is why adhesions are so hard to nail down. Maybe her doc can place an order like that for her? The bad news is that surgery is usually the only remedy. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Upon completion of my proctocolectomy I experienced urinary retention. It was such a relief to learn to self-cath. Gradually, my urinary function returned. However, I have problems when asked to give a urine specimen for a urinalysis. I've trained myself to empty my j-pouch each time I urinate so I can never give a clean catch. It's been so many years since I learned to self-cath, I need lessons. Believe me, I'd self cath each and every time I needed to have a urinalysis! [ more ]
If you have to go the self cath route, know it's not a big deal. I dealt with this throughout childhood and college then into adulthood before I had the courage to try it. It was life changing. It doesn't hurt, can be done discretely even in public restrooms and alleviated my stress to such an extent that just knowing I could usually caused me to be able to pee freely. I've probably only done it a dozen times in the past 10 years.... Always on long, stressful trips when the public restrooms... [ more ]
What about natural diuretics like apple cider vinegar, cranberry juice, watermelon? [ more ]
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J-Pouch ForumsGeneral Discussion
We are in northern Florida - however my husband has had pouchitis too - he does not take perscription medication when he gets hints of it now - he takes a very strong probiotic twice daily - I mean 50 to 70 billion per capsule - it works for him. He also avoids his trigger foods too to avoid the dreaded sting he often gets. nancy boots123cook@yahoo.ca [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
UPDATE: When I first made this post I was only 22 weeks pregnant. Now my little man is 9 1/2 months old! My pregnancy went really well until the end. It was almost a month until my due date when I started itching all over! I did some research and saw that this could be due to cholestasis of pregnancy, which could end up in a stillbirth. I had just had a nightmare a week prior that I had a stillbirth and got a little paranoid. After begging my boss to let me run to the doctor real quick for... [ more ]
@ Lovin Life - I haven't had any problems with the essure at all! I did end up waiting the 3 months, but never had a follow up HSG. I just crossed my fingers and went for the IVF. @ Allie 86 - Good Luck to you! Please keep us updated! [ more ]
This post could not have come at a better time. We did IVF in August and I hyperstimmed as well, no transfer. Since then I have been hospitalized twice with kidney problems and we finally just started meds for a frozen transfer. I am so anxious and success stories help more than you know. THANK you! [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsWomen's Health & Pregnancy
@andrea951....How are things going? I hope you are still on here. Did everything work out with your pregnancy? I had a failed IVF (Dec 14) and will be getting an Essure placement next week. I am kind of scared after reading all the Essure horror stories. Did you have any complications with Essure? [ more ]
Thank you! Best of luck and hope your upcoming FET runs smoothly. [ more ]
Congrats Andrea! What great news! I actually have an appointment this Friday to see if its ok to go ahead with FET. My fresh transfer got canceled b/c they retrieved too many eggs and it increased my risk for hyperstimulation syndrome. Anyways, hopefully I will get this same great news soon! And Congrats again! I'm so happy for you!!!! [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsHelp! Need advice now!
The very true and sad thing here, is the very condition itself could have been stopped in the first few months of its beginning, if only Doctors and Pharma were not ,"Big Business". For a real example, read my post i just put on today,"Colitis and how to beat it" told to me by one Honest Doctor who told me first hand, they knew of this many years now but are told not to tell people of it because it is not FDA approved. He doubts that is the reason. He told me that there would be millions... [ more ]
Valerie, You are inspirational. [ more ]
I've had many j pouch problems that left me with anxiety. I take Lexapro and on occasion lorazepam. It's been 15 years. When things r good I am ok. As soon as a problem comes back I'm a mess again. Unfortunately for this disease it seems to be the norm. [ more ]
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J-Pouch ForumsPouchitis
I'm pleased (and relieved) that it arrived. I sent you a PM at the time, but perhaps you missed it. [ more ]
No it didnt. OMG it was the same date as my reorder. I got my reorder and then a week later I got another one. I probably didn't look who sent it assuming it was from the pharmacy. I remember saying to my husband, why did I get a another one, only half filled, thinking oh maybe the first bottle didn't have the full amount and just put it in the closet. Now I have to reorder and am wondering why I have a extra full bottle never open. THen I read that you sent me your bottle. So it's all... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Very common to have a change in diagnosis. My son is going through the same thing, they don't know what the heck he has. He too, has his large intestine removed, in June 2014. Age 23. Blood coming out from Jpouch could mean a fistulia. And do not wait to see gastro. Tell the person scheduling it is an emergency. I get in to se my people the same day lots of times. Never wait for an appointment when you are having a problem. My son has a fistulia right now and is having a lot,of blood... [ more ]
With a twin with Crohn's that definitely increases your odds that you have the same diagnosis. Crohn's has a higher familial association than UC. Not sure if this means your pouch is doomed. It is quite possible that your bleeding is from the retained rectal cuff (cuffitis). With your symptoms I would call back and insist on an earlier appointment, even if it is just a consult (no scope). Sounds like you need a new plan of action. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
I will keep that in mind. Thank you very much for your post . I hope you and yours are doing well. [ more ]
I did a transplant at home using my son. I did it for a week. For pouchitis . It did not do a thing and I found it very time consuming as you need to hold it in and with a pouch its a challenge. I did not get him tested as he was my son. I don't recommend this but I was desperate and Did not have the extra money for testing. My doctor gave me a prescription but his insurance did not cover. Now for c diff that was different although the antibiotics kicked in before the transplant was... [ more ]
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J-Pouch ForumsGeneral Discussion
Original poster has had takedown surgery now, so won't need Holister or Convatec products if all goes to plan; same for myself too. During my time with the End Ileostomy I've used the ConvaTec Esteem Synergy two piece system and I've never experience the flange/wafer breaking away from the skin or any other leakage issues. During day to day activities, not once have I experience significant issues whilst using the ConvaTec products other than very minor leakage from the bag, which was easily... [ more ]
Just giving my own opinion: I have a loop ileo and Convatec has been a miserable failure. All bags coming off at night or generally less than 24 hr. The flange is made out of a paper like substance with no flexibility or grip. Hollister fabric flanges are far better for me. Convex is totally worth trying but it may be harder to use a barrier ring. Hollister has convex options too. Best of luck [ more ]
Hello! I believe your surgery is today? Here's to it going perfectly! keep us posted when you can. :-) [ more ]
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J-Pouch ForumsGeneral Discussion
I cannot see anywhere in prescribing information where doubling the daily dose was recommended, sometimes doctors just find out variances that work within their own practice. I did see reference to 4 Gm daily by enema in studies to induce remission for left sided colitis. Overall, mesalamine is quite safe and there are few side effects even at high doses. The main problem with twice a day dosing of suppositories is rentention of the medication when you won't be laying down, since ideally you... [ more ]
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J-Pouch ForumsGeneral Discussion
In order to have a j pouch, it is necessary to have a functional anal sphincter, which is usually removed when a BCIR is performed. Without a sphincter, your options are limited to a kock pouch or another BCIR. You definitely should get a top rated surgeon for either of these procedures, but keep in mind that there are no guarantees regarding possible complications. After I was advised by my GI and a well-rated surgeon at Mayo to have my j pouch removed (for presence of high grade... [ more ]
I had my first ileostomy in 2000 then 6 months later had the Barnett procedure. After 3 revisions I had to convert back to an ileostomy. I was pregnant at my last surgery. After 5 surgeries and 2 kids, I have not been eager to undergo a major operation again. I am considering it now because my kids are older, my bag leaks all the time, my skin is in pain and I am tired of having a bag. I am still not sure it is worth it to convert. If someone could just give me a crystal ball and tell me the... [ more ]
I agree. if you are able, go to Cleveland Clinic. Don't use and enexperienced surgeon. This surgery is so difficult, that if you have to go somewhere, might as well go to the best. I have a very experienced surgeon and we have an unusual complication and we might end up in Cleveland as well. [ more ]
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J-Pouch ForumsGeneral Discussion
My issues started in 2012. Got a perianal abscess of a gland that turned to a fistula. My my surgeon will not perform a fistulotomy/ectomy on me, as he says it's dangerous for us in that we already have sphincters that went through a lot, and the cutting could render us incontinent. I had a seton (the rubber band drain) through the tract for 18ish months. It's out now. I'm on Humira, and finished a steroid taper, and things are holding. My fistula tract was mature after having the seton in... [ more ]
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J-Pouch ForumsGeneral Discussion
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One more thought....thickening with fibre was vital in my opinion (and obviously many others). I use psyllium husks four times a day but most use Metamucil (I don't like its' sweetness). I would definitely add it to your day if you haven't already. And Imodium as well. [ more ]
I remember all too clearly having to stop everything and try to clamp like a steel trap. I don't remember how long that lasted but I know I really noticed a big difference at 4 months and then another qualitative leap at 6 months. At the beginning I would often wonder if I had done the right thing. I'm (generally) glad that I had the surgery. I'm at nine months now. 5-6 per day, one in the night. No clamping. No leaking. No real urgency. At times burning but nothing like it was in the first... [ more ]
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J-Pouch ForumsGeneral Discussion
It depends on your profile. If you have no inflammation, annual is not necessary. If you have chronic inflammation and a history of dyplasia in your colon, annual is absolutely necessary. [ more ]
Thank you. I've been trying to find if there is any evidence-based research or solid recommendations. GI doctor doesn't seem to be too concerned, but my primary says there are standards (she just doesn't know what they are). Of course this comes up 11 years later, when I'm having unexplained GI symptoms, and have everyone puzzled. [ more ]
I don't know if there is an accepted standard recommendation but my surgeon said that I should go every year for one but my GI said that they weren't necessary. Go figure, I would have thought it would have been the other way around with the GI saying every year because he would perform the scopes. I had my j-pouch because of UC, if I had my j-pouch due to cancer then my GI said that I would need closer monitoring. Scopes are quick and easy, you can have them with or without sedation. I'm... [ more ]
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J-Pouch ForumsGeneral Discussion
I had a 3 year remission stopping remi cold turkey [ more ]
I stopped remicade "cold turkey" and it was fine. No side effects. [ more ]
I can't say definitively, but I think it is fairly random whether a Crohn's relapse will occur after stopping a biologic. Remicade has the longest half life, so it would take longer for a relapse than others. The good news is that the other biologics are fully humanized proteins, unlike the mouse based protein of Remicade, so less likely to produce allergic reactions. Plus, they are sucutaneous injections, not IV infusions, so they enter your bloodstream more gradually. It is typical to stop... [ more ]
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J-Pouch ForumsGeneral Discussion
This post has been helpful to me. I'm two weeks out and have a follow up with my surgeon today. My site is left open, but I do pack it (lightly) every day. His reasoning is exactly the same as your surgeon's, though I think he also felt the packing would help remove what needs to be cleaned, as well as make ultra sure it doesn't heal at the top first. I will ask him if that is still necessary, because it would be nice to not have to do it, it stings when unpacking. Happily, it is healing... [ more ]
All sorted now. Nurses are following my Surgeons instructions, although dressing the wound every couple of days rather than daily. [ more ]
I thought just gauze was strange too but he's correct. My visiting nurse was wonderful and never questioned. Mine healed up nicely and continues to get flatter as time goes on. Listen to your doctor! [ more ]
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J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
Thank you keepmovinon and Jan. I really appreciate all of the support we get here. Other people who have not had to go through this don't understand. It is nice to have empathy and support here. [ more ]
Sounds like the docs are trying to be creative, so that's a good thing. I sort of cringe when I hear of docs shrugging their shoulders and giving up if the standard treatments don't work. It can be very frustrating and demoralizing to feel that you are not making progress. Sometimes it takes dome trial and error to discover what works. Fingers crossed that she's on the right track! Jan [ more ]
Positive vibes from here as well. I hope your daughter gets to feeling better very soon with the new meds and that you both get some much-deserved sleep after the hospital stay. [ more ]
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J-Pouch ForumsGeneral Discussion
Answer to your question is yes- thickening of bowl wall=inflammation. For more on the MRI Enterography generally, read this thread: https://www.j-pouch.org/topic/m...study-of-small-bowel [ more ]
Thanks Guys. But, whan an MRI says, "diffuse marked colonic wall thickening spanning from at least the rectum to the distal descending colon" is that just MRI terminology for inflammation? Or does it mean that there is scarring and possible irreversible damage? My colonoscopies always said that all of my inflammation is superficial so I am confused if I am reading to much into the MRI wording or what? [ more ]
I am by no means any sort of authority or expert on interpreting imaging reports, but I understand a little. From what I read, it does not appear that there is any clear indication. You can have colonic bowel wall thickening with both Crohn's and UC (particularly with long standing, chronic UC). Higher degrees of thickening are associated with Crohn's, but I cannot tell if that is the case here. If this is Crohn's, it looks like Crohn's colitis, as there is no evidence of involvement outside... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Hi Blooming Cy, i had mine exactly one week prior to yours, and you are asking almist exactly what I was wondering about! I did have a good friend remind me that there could be a lot of adjusting still, so if things should get a little less ideal, to just go with it. That there may be times of two steps forward, one step back, but that it's all good. I wish you continued success! Let's keep each other posted through this process. :-) (and Jan, your words are helpful to me too. Thanks!) [ more ]
Thank you Jan! [ more ]
In the information area of the top menu bar, there are dietary guidelines. It is an old article, but still relevant. The main thing to remember is that these are guidelines for post op and early adaptation, not forever! Here is a link to it: https://www.j-pouch.org/pages/diet Yes, lots of intestinal gas is common in the early days. Your gut bacteria is repopulating and you are not digesting fully due to that and due to recovery from surgical trauma. It gets better. Six to eight small meals... [ more ]
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J-Pouch ForumsGeneral Discussion
i am already enjoying the posts directly to my email..and so far it is user friendly.. as to anyone leaving because of changes they clearly are not someone in need of the site to begin with!!!! i for one would do anything to keep using site..it has been a god sent to me and so many others.. god bless bill... [ more ]
While I have been a member here for about 6 years, I have not "checked in" in about a year. Coincidentally I came back on the day the new site was launched. I love it! After exploring it for a while, I find it easy to use and user friendly, (and I'm an old fart). I'm sorry to see that a few have decided to leave because of this change. Thank-you Bill!!! [ more ]
Yes to everything you said jan with your pretty clear explanations and my poking around I am sure I will get comfortable with new formate.and I love having it pop up on my phone [ more ]
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J-Pouch ForumsPouchitis
scott dr shen does as much research and keeps records of his patients which number about 2000 at any given time i know..and probably has as good a handle on whats what as anyone..but i would love to throw out the question of ibd patients vs. others who get a j pouch and why the higher incident of pouchitis.. unfortunately he is so busy and does a great job in getting back if you are having issues but the only time to ask him this is when one visits.. i go only once a year...but i plan on... [ more ]
Most of our questions will never get studied in clinical trials, I think. Most centers just don't have enough J-pouch patients to put a study together, and those few that do are conducting as much research as they have capacity for. We kind of have an orphan condition - not as rare as some, but still uncommon, and not a large impact on public health (as constrasted with something like diabetes). There are some newer, interesting (and promising) research methods using social media and web... [ more ]
rachel i agree why no studies maybe if they did they might get to the why that evades us.. [ more ]
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J-Pouch ForumsOstomy & Skin
ISUJed, for how long did your butt hurt? I'm going on week three post op and still need an occasional Percocet because there's so much pressure and discomfort down there. [ more ]
I used a pillow. I worried about my butt hurting but for me it's been relatively pain free. [ more ]
Holly, how are you doing? I hope you're healing just fine! [ more ]
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J-Pouch ForumsK-Pouch Korner
J-Pouch ForumsGeneral Discussion
Thank you so much jan really appreciate the help [ more ]
Rebecca, I think I posted this elsewhere, but if you click on Forums and choose Directory, you will get the list of forums like there were in the old format. You can go there to look at posts the old fashioned way. If that is what you want to go straight to when you logon, why not just bookmark that (see below)? https://www.j-pouch.org/forums Or, you can just scan the recent posts list on the right sidebar on most pages. Also, every time you post something, there is a choice that you can... [ more ]
bill i just posted something as new approach for pouchitis..kind of testing out the new site waters..tomorrow for example how do i see responses? and how do i review older topics and is it correct there are no breakdowns as general discussion,pouchitis etc? [ more ]
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J-Pouch ForumsGeneral Discussion
@ks1905, my dentist has me on a prescribed toothpaste that is 7% fluoride vs the normal of 1.7%. I'm brushing twice a day along with flossing and using my Waterpik a few times a week. I also am getting my teeth cleaned more than 2 times a year. I hate UC, and everything else. Mine were mostly at my gum line too and didn't occur until several years after my take down. I've have conscious medication, like CTBarrister, and never been offered Propofol for any of my colonoscopies or pouch scopes,... [ more ]
Originally Posted by TE Marie: Last year I had 18 little cavities as my gums receded, because of all of the medications I take. No longer a tough girl I requested and gladly paid for nitric gas, think that is what it's called, for the 3 times I had 6 cavities filled at once. I also took a xanex and some times a xanex during the marathon drilling events. I just had 2 "little" cavities at my gum-line filled yesterday, it's the first time I've had a cavity in probably 20 years. The dentist said... [ more ]
I've had 2 different kinds of scopes. I didn't realize there was a "straight scope" one and a flex sig one. Jan enlightened me then explaining that my surgeon had done the straight scope as he probably doesn't have the training to do a flex sig. He had me come a year after take down and without any prep he had me literally pull down my pants, lean over an examination table and it was raised up so he could stand up, insert it, have a look around and was done. It left like a broomstick or... [ more ]
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J-Pouch ForumsPouchitis
J-Pouch ForumsGeneral Discussion
I used to have a vitamin cupboard that cost a fortune to maintain...Everything and anything that I could find that was supposed to give me energy, healing, strength etc... Then I realised that they were all coming out the pouch the way that they went in (especially those huge B complex horse pills and the multi vits that never dissolved)...They were more trouble than they were worth. Now I am selective. I get Vit D ampules 4xs/from my doc to maintain the level (they are very serious about... [ more ]
I take Forvia chewables twice a day. They're specifically made for people with absorption issues. I order them online. [ more ]
Thanks for the quick replies. Jan I do have absorption problems, so anytime I can take a chewable or liquid for that is what I am told to take. Every time they check my B levels they are good, even though I am constantly tired so I have wondered about those. [ more ]
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J-Pouch ForumsGeneral Discussion
I am confused. You've had your j-pouch for over 15 years, had little trouble with it, but regret getting it? I understand not wanting to deal with doctors, but once you have a disease that destroys your colon, you sort of require some sort of lifelong follow up. If you think you have pouchitis, you need medical treatment, which means contacting your doctor. Metamucil does not treat pouchitis, but may treat the watery stools it causes. Pouchitis is an inflammation if the pouch, often... [ more ]
It sounds like your pouch has been giving you good service, so your regret surprises me, unless there's more to the story. In any case, it's hard to be sure whether Metamucil would change your pouch noises, but why not give it a try for a few days? [ more ]
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J-Pouch ForumsGeneral Discussion
It might be a good idea to have blood test for sed rate and c-reactive protein. The low radiating back pain sounds like the way my polymyalgia rheumatica started. Over a period of months, it spread up my back into my neck and shoulders and head. At first my doctor sent me to physical therapy which did not help. Finally, it got so bad, I went to the ER where they did the blood work which showed the inflammation and put me on prednisone. (I never had experienced such a rapid reversal of... [ more ]
If your pain is more in the upper buttock region, rather than the lumbar, it is sacroiliitis. Sacroiliitis is associated with UC, and may or may not be associated with active bowel inflammation. If it lasts over 3 months, then it is more likely to be enteropathic arthritis, a form of spondylitis. I have this and was diagnosed a decade after colectomy. But, I stress that it is too early to assume this. You need months, not weeks of back pain. Most acute low back pain will resolve on its own... [ more ]
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J-Pouch ForumsK-Pouch Korner
Hi, Sorry to take so long to answer but work and time changes get the best of me. Yes, exercise is good, especially the simple easy stuff like walking, swinging arms, shoulder rolls etc...But squatting down puts a lot of stress on the lower abdominal muscles, leaning forward and picking something up (anything heavier than a can of tomato soups is out of the question for now) puts strain on the sciatic nerve, the lower back and the abs. Not good. My surgeon is a great believer in yoga and... [ more ]
Thanks for the input. I left out that my husband drove me to the grocery store, pushed the buggy and got just about everything I pointed to. Then he loaded and unloaded them so no lifting whatsoever. I don't carry the laundry basket - just take out a few items at a time. I'm a little over a month, post surgery - question - are you saying I shouldn't stoop or lower myself to the floor for items while gently pulling myself up? I thought I shouldn't be doing that either, but Dr. Rehnke said... [ more ]
Grocery shopping? Are you out of your tree? (Fine I did the same thing a week post op but then again I really ended up hurting myself !) Gently strolling down the ailes not reaching up for produce or down for bags of stuff...No squatting down to pick up a bag of potatoes. No pushing that darn buggy! Same with laundry...you do not carrry the basket down to the laundry room! As the resident expert on doing really stupid stuff post op and messing up my pouch thanks to my stupidity...please do... [ more ]
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J-Pouch ForumsHelp! Need advice now!
My GI is Dr. Dan Smiley out of Bristol Ct. My surgeon was Dr. Saumitra Banerjee with offices in Plainville, South Windsor and Bloomfield. Dr. Banerjee would be the one with the most experience in J-Pouchs. He has a well informed web site. [ more ]
I am also from CT and looking for a GI. Does anyone have any recommendations? [ more ]
You are from CT too? Do you mind if I ask who your GI is? A few of us have lost ours and are looking for someone experienced w jpouches. My GI did mention the shots, but my surgeon did not feel they were a good long term approach. Not sure if mine in a small internal skin tag or ulceration. Every time I have been scoped my GI is not concerned, but it can be very annoying and painful as you know. Personally, I find rectal meds do nothing for inflammation in the anal canal. I do get some... [ more ]
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J-Pouch ForumsGeneral Discussion
Frances, this is why support groups like this are so valuable. Unless you have lived with bowel disease, you just cannot comprehend it. having others to commiserate with can mean a lot. While it saddened me when my husband developed UC, at that point he toldme, "Now I understand what you went through!" As much as they might like to, they just cannot really understand how how IBD can rule your life. even if we cannot solve your problems, we DO understand them. Jan [ more ]
Thank you for sharing your story. I have had a j pouch for 15 years and in the hospital 1 time a year until j pouch. My j pouch became weak from so many infections. Went to Dr Shen and he did a scope and I was so sick with pain and no control of bowls by then. He said because of so many infections its left my j pouch with terrible painful spasms and going to bathroom about 25 times a day. He put me on Belladonna/Opium suppositories every 12 hours. The first couple of months through me for a... [ more ]
And yes. Humira DOES burn! [ more ]
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J-Pouch ForumsGeneral Discussion
and now a word from our sponsor ...ilex is great! It works fast for my butt burn. I have tried other products but have not found anything that works as well. It can form annoying balls or lumps but that's a minor problem. [ more ]
I actually have a similar question about ilex. Is it supposed to harden up? Reading, it seems it does - kinds like my old Cavillon barrier wipes did around my stoma. But the ilex seems to stay goopy - like Vaseline. And I get he same little balls when wiping. I thought I had a defective tube (ordered from random place on amazon), so I have a new tube coming from Edgark tomorrow. But maybe it's not defective and I'm just doing something wrong? For that matter, could I use my old Cavillon... [ more ]
Update...Update...Update..... It must be the surgical wet wipes causing my problem. Think ilex application instruction say don't use wet wipes. I Just used a damp cotton type wipe to cleanse and then pat dry with cotton wipe, in n out within minutes and could feel the ilex barrier remains intact without the need to reapply. [ more ]
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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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