J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
Has he managed to pee yet? Even though I am a girl, I find it very hard to pee post op...(this last time it took me about 12 hrs of agony) so I used all of the tricks that my parents used on me as a kid...running water, sipping water, pouring water, putting my fingers in a glass of water...making peeing sounds...somehow it all stimulates the brain and reminds it of the job that it has to do. I always end up with a boy's urinal because bedpans suck. Can't use them, never could. The nurses are... [ more ]
If there is an IV hydrating him he should need to pee. If they have to catheter him that is not going to be a very pleasant experience but don't tell him that. If he isn't peeing that's what they are going to do and you will not want to watch or be in the room for it but don't worry because he will survive it. [ more ]
8 hrs seems long enough, cath now. I dont remember needing a catheter after my takedown but I did after pouch creation. I guess it depends as to whether your son is consuming enough fluids, if not, then maybe he doesn't have the need or urge to go. However, as said, 8 hours is long enough, best to be on the safe side and be cathetered. [ more ]
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J-Pouch ForumsGeneral Discussion
Before my takedown there all sorts of test to make sure that the reversal would (hopefully) be a success. One of the tests was done by my surgeon. A rectal to make sure that there were no adhesions inside the rectum. She actually opened something ( and I'm sorry I just don't remember what it was but it hurt when she did this) that needed to be open to eliminate future problems. Takedown does take awhile until your body adjusts to the new plumbing and even though I do go a lot I can always... [ more ]
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J-Pouch ForumsGeneral Discussion
Hello everyone - thanks so much for your responses! If anyone else encounters this issue, please feel free to add your much appreciated insight to the thread. Scott F - I really appreciate that differential - I will try and ask about those possibilities at my next appt! It is honestly so strange, as I will go 5 BMs without blood and normal appearance, and then maybe 1-2 with an orange tint and reddish pieces (that look like tiny shards of carrot almost) floating around that look like bloody... [ more ]
I have had my take down suregy 2 months after j pouch construction and I am almost 2 weeks into after take down . My number of BMs are pretty normal . The only problem I have is that I get blood in stool sometimes . Sometimes it's just streaking but I got big drops of bright red blood today which is freaking me out . Also I feel pain in my rectal area and Labias if I walk or stand for more than 10 minutes . It gets better upon sitting . My surgeon and Doctor Doesn't know the reason for it . [ more ]
It's been over a decade since I had my surgeries, so my memory is foggy...! but I do recall having bleeding for a substantial amount of time post-surgery. It sort of dwindled away over time, going from daily, to occasional, to not at all. No one seemed overly concerned about it and it resolved on it's own after a couple of months. My surgeon did say it could be remnants of surgical things, and my GI even suggested it could be the rectal cuff finally calming down from disease. Either way, it... [ more ]
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J-Pouch ForumsGeneral Discussion
I've gotten more true day to day help from everyone here than all of my medical professionals put together. Jeffsmom, I'd like to add butternut squash soup: soothing, thickening and delicious! [ more ]
I've thought about this as well for some time. When searching through the history, you come across a lot of extremely useful recommendations that were made in the past, from diets to supplements etc., that would be extremely useful if compiled in some form. [ more ]
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J-Pouch ForumsGeneral Discussion
I read some anecdotal stuff online (but from people with IBS) about it losing its efficacy. Though I wonder if it was just a case of the people thinking it lost efficacy because they forgot what normal was once they went back to normal. I also wonder how the effects differ in someone with IBS and a colon and someone with a j pouch. [ more ]
From what I've read, there is no tolerance to Imodium.I've been taking it for >20 years. I took the maximum dose for about 5 years, then tapered down since then. I now take 1-2 per day. Jan [ more ]
Imodium doesn't seem to become less effective over time, even with daily use. Even the opiates used for pain management don't seem to lose their gut slowing effect over time, though the pain relief does slowly disappear with chronic use. [ more ]
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J-Pouch ForumsGeneral Discussion
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Sure. Butt issues plus oral contrast can both cause problems. Jan [ more ]
I can drink all liquors except red wine. Beer is no problem, although with the exception of a few trips I have made to local microbreweries with friends, I don't really care for beer too much. The issue I have with red wine is I think due to the tannins in the red wine. When I consume red wine I have a watery, explosive diarrhea. No other problems though and although I am technically on a 4 drink a week limitation due to taking methotrexate, I have gotten away with cheating on that... [ more ]
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J-Pouch ForumsGeneral Discussion
While it may be true that Cipro can have delayed effects, the vast majority of side effects will occur while on the medication. But if your breaks from Cipro are brief then they probably won't help you tell if the problems are related to Cipro or not. If you can arrange a couple of weeks off Cipro you might get better information. Have you tried other antibiotics? Have you had any non-Cipro successes? [ more ]
It's hard to tell cause it's kind of always in my system. And everything that I've been reading says symptoms can pop up even months later. [ more ]
Sonja, do the symptoms get better when you are off the Cipro? That could help clarify whether the symptoms are side-effects. I've been on Cipro continuously for a fair number of years now. It's a trade-off, of course, but I haven't had any serious side effects, fortunately. They would have to be very serious indeed for me to prefer continence issues. [ more ]
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J-Pouch ForumsGeneral Discussion
GMR, thanks. I want to add/reiterate some points: I wear protection at night (Depends, covered by underpants (to make me feel like I'm not wearing protection...psychological for sure but I look better in front of my wife in briefs than in Depends And I have a pad under the bottom sheet and another on top of it ... and I wrap my "butt" area with a lightweight pad and towel, so if I do have an accident it is minimized in terms of soiling the bedding. I wear a thin pad in my underwear during... [ more ]
I wish I would have joined a forum a long time ago. It is nice to discuss some not so pleasant issues with people who really understand. Thank you so much for your replies. I was getting discouraged with my frequency and leakage. I have been avoiding doing some of the things that I love to do (like going for long walks). I need to get this under control and just needed some encouragement. Thank you so much for listening and responding. I believe it is time to go back to the doctor. I am... [ more ]
GMR: I take about the same amount of Loperimide as you although mine are tablets. Are there capsules available? I also share your unease about staying overnight in friends' homes. I travel quite a bit and take my "defense kit" with me (extra supplies, extra lightweight easily washable/dryable underwear, a pad to wrap around my waist to protect bedding in case I have an accident.) I have been a in a test phase to determine if a sacral nerve stimulator might give me some relief. Based on the... [ more ]
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J-Pouch ForumsGeneral Discussion
I leak about 75% a day. I were a pad from one end to the other. If I can't get to rest room it irritates my rear end and skin gets raw a alot of pain while walking anywhere. Was told My 15 year old j pouch 4 years ago has become weak due yo so many infections. Causes painful spasms and lose of control. The leakage is horrible. [ more ]
tried them, don't like the adhesive on my hairy butt..lol [ more ]
There's a product called a Butterfly pad. My friend gave me one to try. I haven't yet but it's an adhesive pad in the shape of a butterfly. You fold it in half and insert between your "cheeks". The adhesive holds it in place. Especially for this very problem. She bought them at Walmart. Good luck!! [ more ]
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J-Pouch ForumsGeneral Discussion
Just fine now that the waters are receding Gin, We were concerned but not (yet) scared....How are things doing on your end? How is the health? How are you feeling? Are things finally improving? Sharon [ more ]
Sharon -- Haven't been around much lately and just saw this post. I hope you are doing well and managing to keep dry? Gin [ more ]
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J-Pouch ForumsGeneral Discussion
Unfortunately, for me the answer was no. Several failed repair attempts later, I am back to a permanent stoma. There are a couple of people who did have fistula repairs which worked, but they involved muscle graft surgeries. You might want to do a search for that and see what pops up on this board. Others on this board live with their fistulas using seton drains or other things. Neither of those procedures were good options for me, so I chose to go the stoma route. Feel free to message me if... [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks so much, I'll talk to my doctor about trying this. Numb sounds really good right now!�� [ more ]
I stopped using preparation H and switched to a prescription 5% Lidocaine ointment. For some reason it worked. I also take Lomotil to cut down on frequency. Most days it works but the hemorroids have definitely improved! The Lidocaine numbs the entire area and which as you know brings such relief!!! My surgeon suggested these changes. Good luck!!! [ more ]
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J-Pouch ForumsGeneral Discussion
Yeah, there's MJ that's all "head" and gets you stoned... And there's other strains more "body" that do not impact you that way as much but help with things like inflammation, etc. There's also CBD oils. The world needs to get onboard with this: if from the lowly poppy we through history got opiates, we need to do the same with MJ. It isn't about getting high, many do not get you high, education is key. [ more ]
Interesting...I didn't know that you could take the 'stoned' out of it... I guess that they can do just about of everything nowadays. Sharon [ more ]
Let's not forget that there are now a variety of different types of cannabis. For medical uses, many people (including myself) utilize high CBD content varieties which are thought best for inflammatory disorders. These lack the psychoactive side effect - at least I have never felt stoned (and prefer it that way). Part of the revolution in the medical use of cannabis has been the emergence of products containing a spectrum of THC:CBD ratios. Using cannabis need not mean getting high any more. [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks. I got this job weeks after my jpouch surgery. i never mentioned it for years as things were great. The last few years have been rough for me, it still feels like its day to day. plus I have gained so much thanks to the steriods and the inability to eat healthy. im telling my boss tomorrow.So if I dont find another position I will be home with my kids for the summer. Which I would love. [ more ]
Don't know, I have been self-employed my whole life but yes, I would wait until they hand you a contract to start negotiating insurance and perks...pointless until they and you know if you guys are compatible...(sort of like discussing kids before you know if you like the girl) Sharon [ more ]
Good luck, ive had the same issues. I've decided to file for disability [ more ]
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J-Pouch ForumsGeneral Discussion
My daughter has had a dry scratchy cough on and off since takedown 1 1/2 years ago. No idea what it could be, I wondered if it could be related to autoimmune issues but hoping not. We moved (actually the very same day that she ended up in ER, was admitted and 2 weeks later needed surgery) so maybe it is something in the new house she's allergic to. She was away at college and just came home a few weeks ago. I asked if she had the cough at college to and being a typical teenager she didn't... [ more ]
thanks for input Donutz [ more ]
I had a cough for 9 months last year and went through all the tests etc. Took steroid inhalers for a few weeks and it cleared up completely. Would recommend. [ more ]
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J-Pouch ForumsGeneral Discussion
Hi Richard and Scott. Thankyou for your replies. I have mainly been using gastro-stop/Imodium and have just started using Lomitil which is stronger. I can't seem to be able to tolerate dairy products and I'm careful when I use them. In the past fibre drinks have not done much for me but I will give them another go. I eat a lot of rice and potato too. My problem is that I have coeliac disease and have an intolerance to gluten and because of this over many years have learnt to curb my hunger... [ more ]
Hello all. My two cents. Which is just that. I was finding the same thing. Everytime I went in for an appointment I saw weight loss. Very disappointing. And mentally defeating me. There were times in the middle of all this I did gain some. But lost it all again. And I could nit live with it. I had no strength... Stamina to do my job. I was wiped out before the end of my shift. I did this for a long time and it was tearing me down... Slowly. I had my pouch for about 26 - 27 months. Couldn't... [ more ]
Francesca, what (if anything) are you doing to slow things down? I understand why you're skipping meals, so the weight loss is no great mystery. The challenge is to explore ways to help you tolerate food properly. Have you tried soluble fiber? Imodium or Lomotil? [ more ]
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J-Pouch ForumsGeneral Discussion
Glad you are feeling better. I am also with Scott and would not assume your symptoms were due to Cipro, but more likely just residual symptoms of the resolving abscess, especially since you had chills before you took the Cipro. Of course, anything is possible. It just isn't likely. Jan [ more ]
Thanks for letting us know, Anthony, and I'm glad it cleared up on its own. Chills aren't one of the reported side-effects of Cipro, but strange things happen every day. It still might have been some residue of the abscess (a "last gasp"), but who knows? [ more ]
Hi Jan and Scott, Thought id update you on what went on. So i finished my 10 day course of cipro 2 days ago which cleared up all my pouch symptoms, however i was still getting and awful chill down my back and feeling unwell ( no fever) while still taking it, only paracetamol kept this at bay. I seen my surgeon on tuesday who performed a rectal exam, he said i have very good muscle strength down there, the pouch felt great and could not feel the abscess which i occurred in January. I... [ more ]
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J-Pouch ForumsGeneral Discussion
try PMing me...I have tons of meal plans...all simple, easy to do, easy to cook and delicious. My favorite thing is fresh herbs (and spices)...they go a long way to transforming something bland into something fantastic. Cooking methods do not need to be difficult either...Searing meats quickly then throwing them into a slow cooker or the oven works fine...takes only a few minutes of prep time and then throw a handful of veggies (sweet potatoes or baby potatoes, cherry tomatoes, onions &... [ more ]
Thanks, that sounds doable. I wish there was a program we could put in all our ailments and have it generate a menu for us that would work. [ more ]
Yes, sort of...my uncle had a both too (he lost his colon to Fap)...his diet from what I remember was pretty basic and very well balanced. Usual meals were grilled salmon, a baked potato, small salad (careful of the dressing) and whole grain bread. Oatmeal with berries for breakfast...his doctor insisted that he have a healthy dose of protein at each meal so there was some yoghurt in the mornings, fish or chicken with lunch or dinner and lots of steamed veggies, whole grain bagels, rye... [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks Claire, no unfortunately Cipro is the only antibiotic that really helps. He is on Omnicef 300 MG twice a day without relief. Cipro causes tendon and muscle pain, fatigue, etc...he takes it when he feels worse. Let me preface this by saying his good days would be a nightmare to someone without a j pouch , much like all of you. He takes numerous supplements, tumeric, cinnamon, magnesium, probiotics, multivitamin, etc.. I'm thinking about giving him a drug holiday, stopping most of... [ more ]
Claire, I have fixed the broken FDA link in your post. Plus, I deleted the duplicate topic that had no replies and combined the topic headings. It is redundant and confusing to have the same information provided in multiple topics. While I understand your desire to get this information out there, it is best to have it in one place so all replies are together. Jan [ more ]
Claire, I had very little to do with antibiotics for most of my life...other than when a teen and repeatedly hospitalized for 'gastro' (at what point were they going to finally admit that it was UC?...never) and pre and post op for most of my surgeries. Plus the usual kid sized infections etc. My pouch had pouchitis the first few years and I did the flagyl/cipro dance but finally got off of it with diet. It took til '99-2000 for me to be stuck on every increasing doses of antibiotics... [ more ]
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J-Pouch ForumsGeneral Discussion
Many great replies. I find that a bidet has made a world of difference in curing the burn. You might ask your parents about purchasing one. They can be very expensive and complex, but also cheap and simple. All work pretty much the same. I have a 16 year old daughter and cannot imagine how mature you have been to handle such a painful illness. Best wishes for fast healing. Ray C. [ more ]
Welcome! I am not a UC/Crohn's disease sufferer (my husband is). He had the 2 stage part done as well. The bag is just temporary! So, hang in there. What my husband did (does), is plan accordingly. Doesn't drink coffee or juices if he has to travel, eats nothing if has a long car trip or plane trip. Eats alot of bananas. Also, drink alot of liquids to stay hydrated especially if you get sick. Sending good cyber thoughts... [ more ]
I swear by the ilex paste for butt burn; from my experience ilex does heal sore skin and once applied it also protects the skin during the next bowel movement. Just after takedown and for 5 or 6 months, I used non scented wet wipes to cleanse rather than using a shower of installing a bidet, then I applied the ilex paste. 12 months later, I rarely use the ilex paste; I just use normal everyday toilet paper now and I only have 3 to 4 BM per day, although it does vary and on occasions can be 5... [ more ]
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J-Pouch ForumsGeneral Discussion
My doctor told my symptom was from Telegen Effluvim http://emedicine.medscape.cotm/...cle/1071566-overview .... so it's only temporary not permanent, which was true in my case. [ more ]
I finished my last Jpouch surgery in February and I started developing Alopecia (hair loss). Its kind of in patches, but my dermatologist (who is a hair loss specialist) thinks that sometimes it's your body's way of reacting to stressful situations....and boy is the surgery process stressful on your body. Alopecia is also another type of autoimmune disease, so there's also that connection. hope yours gets better with time! [ more ]
It's like a reverse permanent. Your hairdresser infuses the protein treatment into your hair with a flat iron. http://www.webmd.com/beauty/ha...ightening-treatments [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Thanks Jan for your time and research. [ more ]
I tried to find any literature on any actual research on this product, and cound not find any. One ingredient (S-Methylmethionine, which is an amino acid, and also called vitamin U), is the ingredient in cabbage juice that is supposed to be so great. All the other ingredients are vitamins and food extracts with the intended purpose of promoting a healthy digestive tract. I could find no evidence that it does actually heal inflamed ileal mucosa due to a disease other than peptic ulcer. Lots... [ more ]
No but thank you for this post. I will mention it to my GI when I see her and can post results. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Wow!!! That is awesome!!!! [ more ]
And the redo surgery I was back to work after 4 weeks.. [ more ]
Good. Keep us posted as to your progress. If I make the move I will pm you. [ more ]
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J-Pouch ForumsGeneral Discussion
I questioned it several times before my first pouch in 2008 and prior to this one being redone. My sister has Crohns. Remzi and Shen have said numerous times they have never suspected Crohns in my case. [ more ]
I give you credit. I have so many issues with mine now. I'm afraid to do the redo for the same reasons you are mentioning. Did they ever question crohns before redo? [ more ]
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J-Pouch ForumsGeneral Discussion
Right now im on cipro and mesalamine sepositories for inflammation of j pouch and rectal cuff. Had a scope done May 17th and they took like 12 biopsies... [ more ]
Are taking bowel slowers or thickeners? If so, you probably should reduce or stop them. If the mesalamine is doing its job, you may not need those other things as much. Jan. [ more ]
Well i was wondering because I find it very difficult to have a bowel movement since i started... i have to force a lot to get just a little bit of stool out... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
HI Ian, I have diverted pouch and end ileo. I got diverted 6 years ago. My life is definitely improved without the pouch. Usually pass mucous every day - for the first 4 yrs this wasn't a big deal. Although the last year or more I have increased pelvic pain and discharge from the pouch - from diversion colitis. I am currently on the fence about pursuing surgery to have the pouch permanently removed. The discharge is tolerable, but the pelvic pain is the annoying thing as I take more pain... [ more ]
I had my in with a ostomy but developed diversion pouchitis. so it was either take it out or go on a bio drug. I choose the bio drug Entyvio and hope this will stay working to avoid another surgery. [ more ]
Your welcome. I don't think people with Pouches that are doing well come in here. I wish they would. I wonder how many pouch surgeries are performed a year and what the success rate is? I wonder if it is even kept track of. I wish mine would have worked. But I tried and it was definitely not for me. Looking back I see that now. I am in a good place now. No regrets. I wish you the best with yours. Richard. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
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When I had the problem of spasmodic pouch/excessive motility, which was shortly after takedown, I did have to take levsin before each meal (30-45 minutes before meals) and this completely stopped the burst of bowel movements after eating. As time went on, I found that I didn't need to. My surgeon told me its excess motility of the shortened GI tract and it sometimes gets out of whack. He knew exactly what to do. Since the mid 1990s things mostly calmed down and it's rare that I will get that... [ more ]
CTBarrister, YES, I do have frequent bowel movements after meals. I will try the Levsin...I have some on hand. Do you take it before every meal? Thanks for your input! [ more ]
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J-Pouch ForumsGeneral Discussion
My pouch removal recovery was just like yours. As soon as I was well... Back in the world.... Because it takes a couple days after a surgery like this.... I knew it was the right thing to do. Now it took another month to come to terms with the alien sticking out. It's not normal. But I had to just strip off the appliance and get in the shower and that was the moment I was set... comfortable with it and knew I could do it. I was so happy at that point. I was actually proud of myself. I had a... [ more ]
Clever, That's just how I felt with my temp loop. I also had some bloody mucus though. It doesn't mean that it'll necessarily be that way for you. I wish you the best. Jill, your posts are inspiring. Thank you so much, I may message you after my consults. I'm seeing Shen next month, and my surgeon (and another different surgeon) shortly thereafter. I will certainly update. [ more ]
Had my j-pouch removed in 2003 for exactly the same reasons and have never looked back. Love my end ileo. Have had two babies. Work full time. No drugs. No diet. No lifestyle restrictions. Even recovery from my pouch removal was better than any other surgery - my body didn't like the j-pouch and the minute it came out I knew it was the right choice. Within 2 weeks of removal I walked a mile on my own. 4 months after I did a 7 mile hike to Ramona Falls at Mt Hood. 8 months later I went... [ more ]
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J-Pouch ForumsGeneral Discussion
I had a stoma for 15 years and went often went swimming both at home and abroad. I generally used a 2 piece appliance and would use the smallest beg possible for swimming and then just change to a larger bag after but did not have to change the base plate - you can obviously get small 1 piece systems as well. The smaller bag is more discreet. I am not sure if you are male or female. I am female and had as per the previous post a pair of swim briefs with internal pocket but would also look... [ more ]
There are ostomy swimsuits with pockets into which you may put your bag. Or you can wear a pair of shorts over your swimsuit. Some people wear special tape over their barrier to ensure that everything will stick well while in water or while sweating - A company named Brava makes them. It's been noted that cold water actually helps the existing barrier to stick to the skin better so you won't necessarily have to change your appliance after you get out of the water, but you can if it would... [ more ]
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J-Pouch ForumsGeneral Discussion
Ronnee, The k pouch is the original pouch. It was made with a one-way, no reflux valve and placed on the abdominal wall (like an ileostomy which it was meant to replace or be an alternative for) and has a tiny stoma exit. You intubate with a catheter to empty it out. A few years later they took the idea a little further and decided to make the same pouch using the natural exit meaning a J pouch...some people went strait to k pouch like me in 1979, mainly because that was my only choice. [ more ]
Thank You Jan, It is soooo wonderful to know that I'm not alone with all this stuff !! I do sometimes take vit b12 and I do feel better. I have ulcers in my upper GI track too, so I get nauseated a lot and never hungry, I was soo skinny after all the surgeries, maybe it is my age, metabolism etc... I love that you are so knowledgeable in this , You are right about the cure vs Poison. Thanks again for your information!! [ more ]
Thank You Kimandor, I too went through a lot in the hospital, blockages, couldn't eat, to many bathroom trips. But my J-Pouch is the best thing, Had an ileostomy for 3 to 6 months. Never want that again. LOL, I'm allergic to the tape too, big red rashes, not fun. Sorry for what you are going through right now , I pray it will get better for you. Thanks again for your input ! [ more ]
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J-Pouch ForumsGeneral Discussion
Since I'm lactose intolerant it's pure hell for me. Lactose free ice cream is still a miserable experience though, just not as miserable as regular ice cream. [ more ]
I tolerate ice cream well but I always eat either lactose-free ice cream (Breyer's) or take a Lactaid pill with it because of my lactose intolerance. [ more ]
For me ice cream itself is ok. The chocolate is the killer, I just have to make sure it has little to no chocolate. Unfortunately, chocolate is probably the worst thing for giving me the itchy, fiery bottom. [ more ]
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J-Pouch ForumsGeneral Discussion
I had BB on and off for years. Taking Metamucil wafers or capsule and/or inmodium to thicken output may help. I used Dessatin for years and then calmoseptine. Had an Rx for anusol I used if really bad, along with a lidocaine. When I started using baby wipes that cut down on BB and cream use, but the bidet attachment has been like magic! I am on my second one after 4-5 years, but I use the $200 model of Biobidet and I have WAY MORE than paid for it over time in the savings on creams to treat... [ more ]
Just throwing this out there, but a good washlet/bidet works wonders for me when I get BB. Never in a million years thought I'd use one. Just bought the TOTO handy washlet for $60ish. My favorite so far as my first one crapped out after a few years. Cuts down on the need for creams. I only use it at home, but it's enough to eliminate the burn after a few uses. I'm sure people have different ways they use it, but I feel it with semi-warm water, use it after a BM, then dry off with toilet... [ more ]
After 24 years I still experience BB. I've found prescription Triamcinolone Acetonide cream .1% does the trick. After reading the posts here, though, I think I'll try some of the other recommended solutions such as Calmoseptine, Nupercainal, and Balmex. It's worth experimenting to find what works best. I had tried A&D Ointment many years ago and found it did not work as well as the Triamcinolone for me. [ more ]
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J-Pouch ForumsGeneral Discussion
Lambie.... I get up at least once... Most of the time twice.. ... Sometimes really late... After sleeping six hours... Ya... Six hours straight! I can't believe it when I look at the clock and it has been that long. I have no problem falling back asleep. Problem is emptying the darn thing when sleepy. I bad better pay attention or else! Lol. Same as you... I wish the pouch was this easy. Thought it may be but I was wrong. But I don't regret trying the pouch. [ more ]
Having said that, I'm sorry that people with jpouches suffer and lose sleep. If I could have my jpouch without pain and sleep loss, I would in a minute! [ more ]
Richard, I clicked on this post, saw your name and thought, "huh?" Glad to see everything's ok. Like you, I got my sleep back. The occasional emptying of my bag and then right back to bed, but no discomfort. We are very lucky. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
I have been rotating Cipro, Flayl and Rifaximin. The Rifaximin does not work as well as the others, so I combine it with Pepto Bismol. When things were at their worst my "go-to," Flagyl, was not working very well, even at higher doses. So we combined Cipro and Flagyl for 10-14 days, then I started the rotation. Don't forget, I also am on Imuran and Remicade now. Hoping to get off the antibiotics after induction. There is hope, but for some, pouch failure is the result with pouch removal. Jan [ more ]
Yes....you got it Jan. Doc says I have chronic pouchitis but I'm not responding to antibiotics�� What antibiotics did you take? We've tried the usual flagyl but didn't work this time. I've been on another antibiotic for sinus issues recently too. Before that for recurring UTIs. Glad someone is actually talking to me about being malnourished finally though....doc is really trying☺️ [ more ]
You've probably investigated this, but if not, consider pouchitis. I had a run of about 6-10 months of all over abdominal pain, gas, cramping, belching, etc.. I would have sworn my gallbladder was going to explode. Rashes and increased arthritis too. All my labs looked good and the only thing that came up was pouchitis when I was scoped. Antibiotics put me into remission, more or less. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
So what is Diversion Pouchitis? and is there a real definition of pouchitis? [ more ]
Yeah, there is always a little "something" left behind, otherwise there isn't much of anything to sew to. Plus, with the mucosectomy, it is pretty difficult to get every single cell and patch of mucosal tissue out. Jan [ more ]
I would suspect diversion pouchitis as well. I had it and Shen got it to stop after a scope with one of his tricks. When I had my scope a few weeks ago with Shen, I asked him since I had a handsewn mucousectomy if I technically did not have a cuff any longer, and he kind of smiled and said I do have a cuff sort of... where the intestine is sewed into the sphincter the connection site can still be considered a cuff per say. interesting [ more ]
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J-Pouch ForumsGeneral Discussion
My son takes it in pill form. He recently started. He is taking it to deal with some bacteria issues. [ more ]
Thanks! I actually picked up a dropper on my way home last night. You are right, that is potent stuff. It buuuurns. LOL [ more ]
There is another thread on this subject here with a lot of info: https://www.j-pouch.org/topic/o...eks-with-oregano-oil [ more ]
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J-Pouch ForumsGeneral Discussion
Another consideration about cotton balls and make-up rounds is that they are not flushable. They can snag on roots or whatever in your waste line and over time cause problems. If you have a septic system, a real no-no. B-Sure pads are flushable. Jan [ more ]
You can find B-sure pads on eBay for a better price. Amazon will have them too. Richard. [ more ]
I tried the B-sures, but way too expensive. Also used the makeup rounds. For years now, though, I use about half a large cotton ball. Originally externally, but found it works much better to tuck it just up inside the hole. Prevents external skin irritation. It generally just comes out when I use the bathroom, although if for some reason it doesn't, I just use a finger to dislodge it and replace with a new partial cotton ball after using the restroom. Works AMAZINGLY! [ more ]
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J-Pouch ForumsGeneral Discussion
That's great news! It's amazing how this all affects pouch function. Glad you are feeling better! [ more ]
They added Clotrimazole lozenges 5 times a day. Within 12 hours my cough is gone and my pouch is working much better. My energy is back and I'm feeling better. I am still taking Fluconozole once a day. [ more ]
KS, what are your other treatment options? [ more ]
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J-Pouch ForumsGeneral Discussion
I get mine by prescription, so it would not affect me. But, I can see how making it a "behind the counter" drug would make it a hassle (limiting the amount, having to register your ID, and sign for it). Jan [ more ]
It sounds like it might just move behind the counter, like Sudafed. That wouldn't be such a big deal, I think. [ more ]
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J-Pouch ForumsGeneral Discussion
Scott, I really don't have any great ideas. I tried avoiding antibiotics and it just did not work for me. But rotating antibiotics has proven effective for me. Still, my GI was not satisfied with controlling symptoms alone, since I still had deep, chronic ulcers while taking them. I was even on various biologics at the time. This is the reason for the move to Remicade with Imuran recently. So, we will see how this works out. Jan [ more ]
Jan, I agree that Flagyl would almost never be used to treat or prevent C diff any more, except in unusual cases. I think it's still a reasonable pouchitis treatment for someone with prior C diff, though. The idea of "avoiding antibiotics" seems too general to me. Do you have a different idea? [ more ]
I had my surgery the year I started nursing school. Four months after takedown, I started full time school and a 20 hour part time job. I've worked all sorts of shifts since, and never really had issues at work. I work full time critical care (36-40 hour weeks, 12 hour days). I may need to hit the bathroom about 4-5 times max in my day, but that's about it. However, I've had a relatively decent run with my pouch over the years, and have never needed thickeners or things to slow me down I'm... [ more ]
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J-Pouch ForumsGeneral Discussion
You're brave! I don't know of anyone who has consumed it like that! It's meant to be added to food. Perhaps something like oatmeal; because you can add brown sugar and milk to help dilute the taste. Or soup? Sue [ more ]
Received my Benecalorie last night. I drank it as a shot straight and it was the worst tasting thing I have every had..lol.. it was thick and chalky and actually felt like my mouth was foaming and almost threw up..lol. it says to add to food so I need to figure out what to add it to. Any suggestions? thought about just adding it to my ensure active drink? I cant see adding it to a juice or applesauce. but if I have to drink it straight, I will. Ive had worse in my mouth before..lol [ more ]
Great information - thanks for sharing - I guess I should be putting ensure in my coffee. I knew it was not great, but sort of thought "better than nothing" - but I guess I need to work harder to find something. I have a hard time eating so many thing - and ensure - about 1/3 a bottle in my coffee never did bother me. Coffee is my "go to" - it's what makes my GI run - it helps food go through me and not get stuck. Yes, it goes through too fast - but without it - well, then I am miserable and... [ more ]
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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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