J-Pouch ForumsGeneral Discussion
Topics
Sorted by last update
J-Pouch ForumsGeneral Discussion
❤️
I have the same exact issues. My takedown was oct 2014 and had terrible itching inside at my two week check up. Was told it would go away . Not really sure why. Well, I am still dealing with it now and actually have an appt next wed to go in And take a look thinking that I have a stricture. It's now hard to go all the way, I go constantly but small amounts and always burning and itching. I too have started using Metamucil and have gotten some relief there. I use the water bottle all the tjme... [ more ]
Haha also just noticed the dates. Whoops! [ more ]
See all 37 replies...
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsHelp! Need advice now!
I sent you a PM Francis [ more ]
Well i had a much needed good cry last night. I was alone my husband was on ski patrol and i just felt so sad that i just cried and i actually think there is something said for a good cry. I felt better after if that makes any sence. I do take care of my mom everyday beacause there is know one else. She is not social at all and depends totally on me. My sister that lives 4 hours away is very rich with 3 houses but she has not and will not help my mom. They are alot alike they are both very... [ more ]
Lesandiego, I hope your broken bones heal well and you are ready to go back to work soon. [ more ]
See all 33 replies...
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Just my two cents worth......my J-pouch loves just about all foods and beverages. I feel so fortunate to have found an answer to the three years of HELL I went through with totally out of control bowel movements and all the side effects of Prednisone. It has been 13 years since my Step 1 and 12 years since my takedown. I've never looked back! Best wishes! [ more ]
Thanks guys the info is awesome ! Jeff I started with the NSAIDs then imuran then ramicade and this is my 4th round of steroids, so they did try the other medications first the imuran held it off for about 4 months so they put me on ramicade which worked for a few months then stopped so he thought he would try it at the highest dose every 4 weeks to see what happens. My specialist has sent a referral for a consult for surgery so we will see what happens! your guys support has been awesome... [ more ]
Interesting info, Rachel! While I was not quite a pediatric patient when I was diagnosed (just a month shy of 16), I was in remission within six months of prednisone, hydrocortisone enema, and sulfasalazine treatment (all they had back in 1972). Even though it was a full blown pancolitis with my first flare, I stayed mostly in remission for well over 20 years. In 1995, when I had my last big flare leading to colectomy, Imuran, cyclosporine, and similar drugs were experimental. They had not... [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
I started out with bidet bottles and still use them when I'm not going to be around my bidet and before that around a sprayer. Using a bidet helps me with more than cleaning after BM's. It facilitates the emptying of my j-pouch when I have problems doing so. Most recently it's been helpful due to pouch problems. My pouch was just dilated with a balloon during a pouch scope. By getting small amounts of water inside my pouch I have fewer BM's and less pain. I hate pain! [ more ]
I wasn't interested in the cold water (brrr) and the cost associated with the installation of a heated bidet was not in my budget so I just bought portable ones which I have stored at relatives homes as well as one in my car. It is small enough to carry in my purse and I have total control over the water temperature and the force of the spray. I couldn't live without it now. http://www.ebay.ca/itm/Blue-Bidet-BB-20-Portable-Bidet-New-/311217075960?pt=LH_DefaultDomain_0&hash=item4875fbb6f8 [ more ]
❤️
See all 5 replies...
J-Pouch ForumsGeneral Discussion
❤️
The UMass diet is derived from the SCD and is the only diet purporting to be specifically designed for those with IBD, although the Paleo Diet has spun off at least one book for those with IBD. More on the UMass IBD diet here: http://www.umassmed.edu/nutrition/research/ http://www.umassmed.edu/nutrition/ibd/ibd-aid/ If you don't have the time to leaf through all the recipes in the second link, I actually did. The diet makes no sense to me, applying what I know about nutrition and what I know... [ more ]
WOW! thank you for your response. I have never heard of the UMASS IBD diet (but I like the name ) I think I am going to look into doing the SCD diet first. I would like this to become a lifestyle change. I know sugar is so bad for everyone, esp us pouchers so I would like to keep it out of my diet for the long term. You are such an inspiration with having your pouch for 43 years! Good for you! [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
My surgeon still practices, so I chose a GI his team recommended that he works with fairly often, for a multidisciplinary approach. My GI only specializes in IBD patients. Sorry to hear you're fitting the bill, too... 20 years after my surgery, I also started with issues. He says he's seeing this a lot. "Old" j pouches are having issues after 20ish years. Mine is with strictures and a fistula. [ more ]
When searching for a new gastroenterologist, ask if they see patients with a J-pouch as not all do. After my surgeries, My gastroenterologist told me he does not see patients with a J-pouch. [ more ]
I don't think you need to go further than the area you live it to find a GI that can do a pouchoscope. My local GI did my first scope and he said all the doctors in his group could have done it as well. It was only after my cuffitis didn't go into remission that he sent me to a GI specialist at the Mayo Clinic. My local GI also caught that I also had c.diff along with the cuffitis You can get tested for c.diff with a stool sample ordered by any doctor. What I'm trying to say is it would be... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
@allswell, I know you are trying to help and am glad you are doing better at 6 months. You asked if Jeffrey had considered going back to an ileostomy. Many of us feel that is the last resort, kind of like getting our colon's removed was the last resort. Further major surgery in it's self is dangerous, etc. Jeffrey's recent pouch scope was good with no apparent physical problems. With so many variables that factor into our health it would be a mistake to take out a pouch that appears to be... [ more ]
Look over the FODMAP diet. It's a diet to limit sugars that cause symptoms in IBS patients, but works with us, too... especially since you're saying you have bloating and gurgling all the time. FODMAP means Fermentable Oligo-Di-Monosaccharides and Polyols. Stanford has a very short PDF online about it, but there's also books written by the people who started it: https://stanfordhealthcare.org...df-lowfodmapdiet.pdf I found that peaches and apples don't work for me, among some other things. [ more ]
I have now quit dairy for the most part. It may be an ingredient in some of the foods I'm eating but no more drinking milk or eating cheese etc. I browsed the health food section at the grocery store yesterday and picked up some almond milk. It tastes quite good. Also picked up some milk drinks made with rice, another with hemp and another with coconut. Tomorrow I go to see my family dr. I'll have him send me for a blood test to see if I'm deficient in vitamins etc. My eczema has been really... [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
I totally agree with you all, was just curious. I'm having the 3 step go for my pre op in a couple hours and surgery tomorrow. I just wanted to kinda see what everyone though, but you guys are right. Everyone's situation is different. [ more ]
I think this is one of those subjects that will always be hotly debated -- i.e. whether a 1 step vs. 2 step vs. 3 step is better. And I don't really believe there is a right or wrong answer; rather, it depends on your own individual circumstances. Currently, I believe that the 2 step is still the most common for j-pouch creation. Many feel, as does my own surgeon, that a 2 step is more ideal than a 1 step, since diverting with a temporary loop ostomy and allowing the pouch time to heal... [ more ]
I think it all depends on your situation, what condition you are in at the time of colectomy, etc.. There's no one right answer. Jan [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Teehee! Guess I've had IBD too long. My first assumption is he was waiting out a fart, doing bathroom yoga to get that second push, etc. :-). Of course, he also may have been wanting to be fashionably late to something, or who knows what. But you're right. It's an interesting topic because we haven't defined what's healthy vanity and self-care pride ("not wanting to wear my illness on the outside" - love that), and what's narcissism. Perhaps I'll get a better handle on that later. For now I... [ more ]
I agree that vanity is to some extent an essential human component and that without it, our self-dignity and self-worth could begin to erode. The subject of vanity in general can be an interesting discussion. I recall many years ago I was at the office of an insurance company for a mediation. During the mediation, at some point I excused myself to use the men's restroom. When I got to the restroom, I observed at the end of the room a full length vanity mirror. Standing in front of the... [ more ]
Gentle, Never feel embarassed about your vanity. It is a very healthy part of the human being and a sign of a healthy psychy. Vanity is often the only thing that we have left after they have stripped us of our guts, dignity (all of those darn tests) and exams where strangers are pushing and touching our privates. As a kid, my mom was a maniac about it. Pretty nighties, always freshly washed hair etc. When they did my k pouch I was 18. I had an angel of a night nurse. She would come in at... [ more ]
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
New member in 2015 but you answered my questions from 2013 about being scoped next week! I had similarities with Member/Silo City. My Dr/Surgeon also retired did yearly in-office simple prep for scopes. Since his retirement I have delayed yearly scoping an finding those rare Doctor's who are familiar with J pouch scoping. After reading postings I'm not as concerned with receiving (over-prep) instructions including IV's, sedation's, arranged transportation etc..that are standard an more... [ more ]
My CRS just has me be NPO (nothing to eat or drink) after midnight, for scopes the next morning. Another doctor had me on liquids after midnight until 4 hours before, then I did a Fleets before I left the house, and one right before the test. [ more ]
I don't have to do a prep. I was awake for my last scope and had just eaten so they used more water sprayed in places to view. I watched it all. I had no clue I was getting scoped then. I have a BCIR but they are all pouches. One doctor gave me directions and I didn't follow them and did what I normally do, nothing. I believe it is just a standard print out they give everyone, thinking we have colons. [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
I don't enjoy getting hit but there is a lot of thinking and strategy involved in boxing which I love, as well as getting you fit so it's a great sport to do [ more ]
I give you guys a lot of credit for even wanting to do this stuff. I can't wrap my mind around the idea of fighting for sport. But, it is popular, so what do I know? Even when I was completely healthy, contact sports did mot interest me. Looks like a good work out though! Jan [ more ]
I forgot to add that after my surgery the doc told my wife when he got done that it's a good thing we decided to get this done now(they moved my date up about 4 weeks). He said my colon was starting to perforate. So I guess I really didn't have a choice. I was lucky enough to get it out before it was an emergency. [ more ]
See all 21 replies...
J-Pouch ForumsGeneral Discussion
Jeff I had 1st surg in 2/13 2nd 11/13 been so long cause I've had a sinus tract in pouch witch is a contained leak so I went in last week and they opened sinus tract up basically good luck with your next surg I will update post after takedown [ more ]
Ps thank you your reply was very encouraging I will update post after takedown [ more ]
Congrats! Hope all goes well for you. If you don't mind me asking, why has it been 2 years? I have my second surgery in a couple days. Is that how long it takes for the take down to be ok? [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
You're still talking about benefits, like I said entitlement to benefits and the EA are not related. The original poster asked about the EA, not benefits. The EA is not relevant to anything that the DWP advisors told you. [ more ]
It depends what you mean by 'considered as a disability' and for what purpose. For the purposes of the Equality Act both Crohn's and Colitis are likely to be considered disabilies if severe enough. This is stated quite clearly in the government's own explanatory notes. People think the EA gives them all sorts of rights that others do not have, it does not. It simply ensures you are not treated differently because of your condition. [ more ]
Determining whether you qualify as a 'disabled person' under the Equality Act as rule does depend on your condition, it depends on the effects of that condition. Essentially what this means is that if, as a result of your condition, you are unable to perform day to day activities and this situation has lasted, or is likely to last, for more than 12 months then you will be classified as a disabled person. For some people a pouch does not prevent them doing anything, indeed it may well enable... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Good for you PSH I've never read of anyone doing so well after take down......but many of us come here because we are having problems. Keep it up! [ more ]
It is OK to be scared of complications. THAT is normal. But, don't let it consume your thoughts so that you forget to notice the good stuff. Yeah, you will have setbacks, but hopefully they will be minor and short lived. Even if a dietary indiscretion proves to be more of a mistake than you anticipated, it does not mean it will always be that way. Even after two decades of this, I pay the price for something I ate or drank. I don't swear off of it, but weigh the benefits against the risk,... [ more ]
Thanks Jan. Makes me feel much better (as you do for everyone). Like seriously. I feel GREAT. Even road to CVS to pick up a prescription with the wife, and not a hint of urgency or issues. Walking around a lot... had a cup of coffee this am (maybe shouldn't have), and things seem naturally to be squaring away. Sometimes what I read just scares me though. I'm hoping this is a really good start to a long-lasting and successful pouch. [ more ]
See all 11 replies...
J-Pouch ForumsPouchitis
Generally, I'd say no. Those are upper GI symptoms. But, untreated pouchitis may cause widespread symptoms. My last bout with it caused pretty severe upper abdominal pain, but no nausea. Some loss of appetite though. But, I never get nauseated. I am nearly 60 and can count on one hand the times I have been nauseated, so I probably am not a good comparison. My point is that is you have known pouchitis, treat it and see if the other symptoms resolve. If not, then there is something additional... [ more ]
Jan, Can nausea, bloating, and indigestion/heartburn be symptoms of pouchitis? Most morning I just wake up nauseous and eat just because I don't want the output from my ileostomy to be complete water. Gotta eat for it to be thicker and not cause problems under the wafer. Otherwise, I don't even care to eat right now most of the time. [ more ]
Unless that exam was particularly vigorous, I doubt it would cause notable inflammation. Just because it is in the lower end of the pouch, that is not an indicator either. The fact that your symptoms are escalating also might point to pouchitis. But, still, the trauma of exams and scopes can cause pouchitis like symptoms. My last bout of serious pouchitis was right next to the rectal cuff, and I had not had any prior exam. Maybe your GI was just thinking/hoping out loud. Bottom line, if it... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Hi Eddie and L.DL, I see this post is from a while ago. Any updates? I currently have a loop ileostomy (and probably for another 6 months). This is my second time around with a loop ileostomy and a jpouch disconnected but still producing mucus galore. I hope you guys have the same experience as I did my first time in that my jpouch continence was much easier without the loop ileostomy than with. Do you guys have any suggestions for disconnected jpouch mucus incontinence? It's far worse than... [ more ]
Thanks L.DL. A best wishes to you as well. Stay strong. [ more ]
Hey Eddie sorry to hear about your issue, but I can truly relate to you. I also have an ileostomy, mine ia an end ileostomy due to many complications long story which I won't get into, but I also have constant anal leakage which is humiliating especially while you have an ileostomy. The whole idea was to get a break from running to the bathroom, but know I'm wearing a diaper and having constant urgencies during day and in middle of night. I'm constantly humid down there causing irritation... [ more ]
See all 15 replies...
J-Pouch ForumsGeneral Discussion
Thanks Scott I appreciate that info I will call my gastro tomorrow . [ more ]
When another doc puts me on an antibiotic (e.g. Ceftin for sinusitis), I try to discuss the plan with my GI. Together we decided in that case to try stopping the other antibiotic (Cipro) for the ten days, and that worked out for me, but you may need both, for now. It's fine to take antibiotics from more than one drug class, but of course you'll be risking more side effects. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
I think you're on roughly the right track, under the circumstances. An ulcer or perhaps gastritis are reasonable possibilities. You shouldn't combine Pepcid with Zantac/ranitidine, since they are both the same sort of drug (H2 blockers). It is okay to combine an H2 blocker with a PPI like Protonix. I'd suggest seeing if sticking to no more than the labeled doses does the trick (I can't tell if you are), since too much medicine can cause plenty of trouble, too. I've moved plenty of times... [ more ]
Since your symptoms improved with your current treatment, I think you are OK to stay on your present course. Upper GI issues caused by NSAIDs should improve over time after withdrawal of the NSAIDs. The same is true of pouchitis caused by NSAIDs. Antibiotics are not needed for that. NSAIDs are fine until you have side effects. Then they are not fine. I was able to take them for years, then got piuchitis from them, so I had to stop them. I now take them only for short courses only. Follow up... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Update: visual scopes did not show Crohn's disease. Awaiting biopsy results. Scope showed inflammation in the bottom of j pouch which GI doc thought was due to digital exam. Still waves of nausea and occasional abdominal cramping now. [ more ]
Oh, and he said the tissue that was bulging down was just a hemorrhoid, diagnosed via exam. That is good news. Just not sure how I got a hemorrhoid considering I'm not hooked up yet... [ more ]
Update: So, I saw my surgeon last night. My surgery is postponed...again. He wants to make certain that I don't have a missed diagnosis of Crohn's before getting a j pouch or that there is not a parasitic infection going on. He said it could just be a virus, but he would rather be safe than sorry. So, I saw my GI this morning and I am getting the whole workup tomorrow (endoscopy, ileoscopy, and proctoscopy). I don't think there will be a part of me that isn't scoped (LOL) and I have some... [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
My hubby (who I started dating right before my surgery, in late 1990) affectionately has dubbed me his "little rumble strip" due to all of the big rumblings and gas blowouts I've had over the years! Good luck to you! My 4 year mark was many years ago, and things were awesome then, too. [ more ]
Happy Pouch Anniversary (We are around 7 weeks apart as my takedown was 12/29/2010. I enjoyed reading your story. I've moaned all over this site for the last 4 years and am grateful for the help I've received.) [ more ]
❤️
See all 11 replies...
J-Pouch ForumsHelp! Need advice now!
Thank You!!!! [ more ]
If you don't get any replies to your question, try doing a search for posts about fistula repairs. Most people have issues with rectovaginal fistulas, so those repairs are different. fistulas can be very stubborn and the longer they are present, the more difficult they are to deal with. Getting a second opinion from a surgeon with experience with this type of surgery would be a good idea. Jan [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
❤️
Besides the gas, though, are there any other symptoms? I mean, if things are "pretty good," you just finished abx therapy, and a dilation happened recently, it *could* be nothing. Flatulence stinks! Have you increased your foods recently (knowing you just recently had a surgery). If there are no other symptoms, honestly again, I'd not be extremely concerned. IF you are having increased urgency, increased BMs, more watery BMs, etc., then there may be something to it. But really, J pouch... [ more ]
I just finished a 17 day round of cipro and Flagyl yesterday [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
I'm a little confused, you said the bag experience was odd, but then you seem to indicate there were certain foods you couldn't eat and yu had problems. Just need clarification. thanks [ more ]
Hello...J pouch surgery is not for everyone. And there are some who were told they could have it only to find that it didn't work and had to have an ileostomy permanent. So, it is a personal and medical decision only you and your Dr. should make. By no means should anyone persuade you one way or the other. As far as being normal...I hate that word. No one is normal in this world!!!! [ more ]
I have happily had my jpouch for 16 years. No regrets. [ more ]
See all 7 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Interesting. I had my K pouch in 1976. After many years of infertility I did finally get an answer. Both my ovaries were tied down with adhesions. Following surgery I was told one ovary was freed but one was attached to K Pouch. Anyway within a year of surgery I had my healthy son just turned 40th birthday. Amazing to think he is now 28 and has been very healthy. Good luck [ more ]
Hey Kate, Sorry to hear your having trouble getting pregnant. My fertility specialist told me that getting pregnant can take us jpouchers a lot longer since the window of time is so small and if one tube is scarred that narrows it down to every other month. I do believe that scar tissue changes over time. The HSG will help give you some answers. Also, IVF and/or IUI are often covered by insurance. I think my insurance offered 4 IUIs. I had to skip that route per my surgeon suggestion and go... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Oops... I hit submit before I was done and can't figure out how to edit in my phone. It's definitely worth watching your platelet counts. For me, I had normal counts with an occasional concerning count (like 70,000) for years, then went two years with all low counts (50-90,000) before being referred to a hematologist and getting a diagnosis. With ITP, they do not treat it unless you are below 50,000 or sometimes as low as 30,000 if counts remain stable. I have never had to be treated except... [ more ]
For what it's worth, my medical facility's lab uses 140,000 as the lower cutoff for a normal platelet count, so 120,000 would look a little closer to normal here I have an autoimmune condition that causes low platelets called ITP (which originally stood for idiopathic thrombocytopenia purpura, now some doctors call it immune-mediated thrombocytopenia) which is rare, but more common in people with other autoimmune diseases. My platelets usually hang out around 90,000 but tend to tank when I... [ more ]
Went to hematologist today and he was not sure why i was there? lol.. He stated that platelet counts can indeed fluctuate with autoimmunity,surgeries,inflammations,and medications. He said mine have fluctuated from barely on the low end of normal to the normal range and hes not concerned at all. If counts are consistantly low then we might have an issue. Hes now my favorite doctor!! first doc in a long time i have seen that was not concerned about me and had bad news for me.. [ more ]
See all 10 replies...
J-Pouch ForumsPouchitis
I got established with Dr. Loftus in 1998 for a second UC opinion. It looks like he advanced nicely in the hierarchy. When I was referred back there in 2012 I saw him again. He asks probing questions, some make me think he's got a j-pouch, and I'm grateful for that. When I looked at his notes subsequent to my July 2014 appointment he said that I looked like a "chronically ill woman". He usually writes that I'm a pleasant woman. That was when he referred me to 2 different departments. He had... [ more ]
Hi TE, I did see Dr Loftus at first but then was moved to a different younger Dr that I ended up working with primarily. I did discuss diet with Dr Loftus but he wasn't pushing anything in particular, it was more me asking his opinion on things. Take Care! [ more ]
❤️
See all 5 replies...
J-Pouch ForumsGeneral Discussion
It is the gas stretching the ileum. Stretch pain receptors are the only pain receptors in the intestines. It is probably not just in your pouch, but may be. Gas pain can be quite severe. Gas is mostly caused by bacterial action on undigested foods, primarily carbs. Reduce your overall carbs, especially concentrated sugar. Too much soluble fiber can be a culprit too. Jan [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Hi Sharon, The flares could easily be caused by all the walking to work you are doing. Ice is important in reducing them, but their cause is likely the biggest issue to remedy somehow. An elastic wrap for support during walking may help some. Glad you have appointments with your docs soon. Best wishes, Scott [ more ]
Thanks Scott, I am wating for the end of the Feb vacation period for my Rhumy and PT to get back so that I can have an appt. Will seek diagnosis (I tend to be inflamatory) but this knee thing is different...I suspect that while walking over cobblestones to work I sort of slip sideways and overcorrect putting undue pressure on the knees. Am presently icing everything for 1/2hr at a time and using anti-inflamatory creams and patches. I can't change my activity level because it is the only way... [ more ]
Good points Scott. My arthritis pain turned out to be inflammatory, not osteo, so probably one of the reasons I did not see relief with G&C. I found that it is important to find out what your underlying conditions are. Jan [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Oh no! Please do not post personal info! Edit your post, or I can do it for you. You can share private information through a private dialog. This is a public forum, so private info is not secure. i would suggest that you have your husband come on and ask some questions. he can ask anything, and set up a private dialog with someone. Jan [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
us Brits call it.... Glandular Fever ......I Googled it [ more ]
I hope you are feeling much better by now. I probably take too many vitamins and supplements but have other health problems as well. You are a younger woman and IMO probably don't need many supplements. In addition to what suebear said, I think if your blood work is fine and you have good Iron, B12 and D levels I wouldn't think you'd need more than a multivitamin. I have a nutritionist thats helped with my supplements She said the optimal level for D is higher than the minimum required. I... [ more ]
I had mono pre pouch and it's not something you can avoid catching. Not all virus's will hit you this hard; in the 14 years with a jpouch I have only had a vomiting virus once. It's good to have electrolyte beverages on hand for these incidents. If you are vomiting or have diarrhea make sure you are getting adequate fluids......and you will have to sip them constantly. If you can eat, ingest foods with high salt content to help you retain fluids. If you can't eat, drink bouillon or something... [ more ]
See all 3 replies...
J-Pouch ForumsPouchitis
I use NUUN tablets in water when I think I need something more that water. They are sold retail some places but I order them from NUUN themselves or Amazon.com. A cyclist on here told me about them years ago. There is no big flavor like a gatorade. I believe you can find out where they are sold retail in your zip code from their site. I can tell I'm getting dehydrated when the tips of my fingers are shriveled up, headache starting and or aching legs. If you got to Amanzon.com you can find... [ more ]
I avoid those drink unless I am in dire need but I can't even remember the last time I had them. Plus they are high in sugar which can lead to diarrhea. I do drink an incredible amount of water every day. on non hot days around 100-120 oz. On hot days it could be 3-4x that amount. My hydration level is good. [ more ]
I am nearly 20 years post op and never drink electrolyte solutions (mostly because I dislike them). I drink when thirsty and if feeling tired or "off." The only time I have had serious dehydration issues is when I have been ill. But, I do not do extreme workouts or spend long periods working in the heat, etc.. I do not limit my salt intake either. My personal guideline has always been the color of my urine. If it is too yellow, I need more fluids. Muscle aches and headaches can be a sign of... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
I'll bring this issue to the attention of Bill J. Maybe it is just a glitch. Jan [ more ]
when i hit file on my desktop to upload i keep getting a window opening up asking if i want to open or save? its a windows generated box popping up. its already saved to my desktop?? and its for sure small enough..cant get it to upload? i give up [ more ]
❤️
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
Besides metamucil have you tried Imodium? It slows down the gut. I have a better time using the prescription Loperamide over the OTC Imodium. It was difficult for me to tell how the Imodium was affecting my BM's. It doesn't kick in as soon as the Loperamide capsules. When I take metamucil it's in 3 capsules 2-3 times a day, which equals less than 2 tbls. Indy_Dave brought out a good point. eating smaller amounts and more often. When everytime you eat it causes pain then you don't feel like... [ more ]
heres some tips for butt burn.... avoid like the plague: greasy fried food - had a pouch for 7 yrs and greasy fried food still gives me a day and a half of trouble...Sugar of any kinds tend to make the acid much worse....anything of bulky size will cause cramps/urge to go - eat smaller portions and space them out....dont skip on eating cause it just makes for liquid butt burn...chew well too use A n D ointment before and after pooping - I have tried everything and this works the best and its... [ more ]
❤️
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Sorry to hear the troubles your going through with the VA if you need more help the vfw and others have people that will help fight for you as well if you haven't talked to them already and they could possibly get your status changed to retired as well its worth a shot I am also at 60% right with a few 0% as well I wasn't to happy about getting retired as I wanted to stay in but with our great leader and cut backs they are MEBing whoever they can good luck with dealing with the VA. I'm... [ more ]
Thanks! [ more ]
Thank you both for your service [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
I comeple tell agree about the cod liver oil.. I had enough to worry about without adding the smell of fish! people recommend ilex and Calmoseptine. I agree they're good. So just some other thoughts are: you can use your skin barrier wipes that you use with your stoma. Keeping fluid off skin is the name of the game. Also, keeping dry. So I used a zinc based powder first when I had butt burn, then followed with my barrier creams. Dries the area completely and adds a barrier (when you try to... [ more ]
When I used a barrier cream, it was zinc oxide. Either plain or with an antifungal (like Baza by Sween). I did not like the cod liver oil ones, mostly because I did not like the nasty fish smell on my fingers, butt, or underwear. Hated it as a diaper rash ointment for my kids, for the same reason. Other than that, it is fine. Now that I am nearly 20 years post op, I can't remember the last time I needed it. Something to look forward to, I suppose! But, you are smart to be thinking... [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
If scopes and CT have not identified pouchitis, then you don't have it. But, you can still have bacterial overgrowth, which is treated the same, with antibiotics. Another thing to look at is your medications. I suspect you are on a number of meds with GI effects. You may be having overlapping side effects that worsen the effects of pelvic floor weakness, which would be expected after your additional surgeries. If you are continent during the day, then that means that your sphincters are OK. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Hope it helps you! To do it "right" you have to eliminate all offenders, then introduce slowly. Good luck! [ more ]
Wow, perfect! That's exactly what I'm looking for. Thanks for the book suggestion, ordering it now. I had a blooming onion on Saturday which started this backslide. I think I got it under control with rice and salmon last night but that sounds great. Thanks again. [ more ]
Here's a link to books. I know it says IBS, but it is restriction of offending sugars to help with gas, which in our case is what we sometimes need. http://www.amazon.com/s/?ie=UT...f=pd_sl_7t2ef9eqwp_b [ more ]
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
All turned out ok! :-) [ more ]
I am guessing an almond is only slightly larger or perhaps even similarly sized to the capsules one is asked to swallow for the capsule endoscopy. I actually refused a capsule endoscopy that was recommended in 2007 because I looked at the pill and thought NO WAY am I getting that sucker down without choking. I was able to observe the pill because my father's friend was, coincidentally, an investor in the company that makes them and when my father discussed with him that I might go for the... [ more ]
Unless you have a known stricture, it's not likely that a single almond will cause any significant problem. If you'd swallowed several, that might have been more of a concern, but I wouldn't worry about just one. You may feel it when it passes, though, as it will be larger and harder than what you would normally pass in your stool. BTW, I see your post is a couple of days old. Did it ever make it through? EDIT - swallowing an almond with a loop ileo may be a little trickier. This would... [ more ]
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
I was going to say that I had some minor surgery on Friday and was so thrilled that I experienced no pain whatsoever for more than 24 hours. Thought I was out of the woods! NOT! The anesthesia wore off and the discomfort (pain) set in! Fortunately, taking Tylenol every four hours for a couple of days took care of it. Interesting stuff they are using these days for local anesthesia! [ more ]
Well my father recorded the conversation with my surgeon after the procedure was over. In the recording she says that she used a new local anesthetic that will last several days. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
HI Sharon I am sorry to hear that you have problems again. Hoping you have a quick recovery but than again do we ever recover from this awful disease . I know that you have been dealing with this for a very long time. I always read every ones post and there are so many that have problems. Wishing you well and all the others Grace [ more ]
Thank you all so much for your replies. It makes me feel like I'm not in this alone. These are great suggestions...I cut out milk today and had some ginger tea. I felt better than I did yesterday so I guess I really do just need to take it one day at a time. Any suggestions for non-dairy soft foods? My husband found dairy free chocolate ensure which actually tastes pretty good and some dairy free icecream/yogurt. I've got soups too. -Jill [ more ]
I do have a lot of different ginger products too...candied ginger and ginger in vinager (like for sushi) that I eat with rice. It helps my k pouch to function properly (keeps things flowing and reduces the gas/cramping). Right now I am eating tons of 'hot' foods like Indian curries...no idea why but I crave rice and curry (very weird for me) but my gut appoves the mixture. Keep up the fluid intake, it helps with the swelling and healing. Sharon ps. Alley, yes, surgery again..7 weeks out and... [ more ]
See all 8 replies...
Join Us!
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.
Forum moderator and advisor
Jan Dollar R.N.
General Disclaimer
- This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.
Materials presented on these pages are copyrighted by William Johnson and Linda B Hurd. Except as superseded in individual documents found here, these materials may not be sold or redistributed for profit in any way without express (not email) written permission of the authors. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD-ROM and inclusion in commercially published compilations (books).
Confidentiality
Confidentiality of data relating to individual patients and visitors to the J-Pouch Group Web site, including their identity, is respected by this Web site. The J-Pouch Group Web site owners undertake to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.
The Crohn's & Colitis Foundation of America,
Philadelphia, Delaware Valley chapter, is located at
521 Bustleton Pike, Feasterville, PA, 19053.
Tel: 215-396-9100
National CCFA headquarters are at,
396 Park Avenue South, 17th floor
New York, New York 10016-8804
Tel: 212-685-3440 800-343-3637
Already a member? Sign In
