J-Pouch ForumsOstomy & Skin
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J-Pouch ForumsHelp! Need advice now!
I think you are confusing elevated blood levels of eosinophils (type of white blood cells) with a finding of elevated levels of eosinophils in mucosal biopsies. The typical treatment for eosinophilic gastroenteritis is steroids, so I am unsure why you are worried about the treatment. If the Entocort works for your symptoms, this should be cause for celebration, not concern. You have been looking for a target for treatment for a long time and perhaps this is it. Once you get into remission,... [ more ]
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J-Pouch ForumsGeneral Discussion
Hi and best wishes. I now have a temporary ileostomy with a decision to make at the end of the summer to try a pouch again. I feel great, eat like a pig (I've gained 20 reasonably good pounds since in a few months!) I'm fairly handy and doing all kinds of improvements to the house and yard ... I never regret having the pouch and will likely give it another shot, but feeling great is feeling great! I am 53 and married, so I realize my position is a bit different than others. The ileostomy has... [ more ]
i think it all depends on the person how they will feel about the bag..some folks are good with it have the right attitude,are generally confident in their own skin and are happy and healthy again..on other hand there are those folks who hated having it temporarily and probably not as confident will not be thrilled to have it .i think too if you had original operation in 2 or 3 steps you kind of know what its like..if you never had ostemy ,had one step like i did you really do not know what... [ more ]
PoucherlnTO- The jpouch is just a pain in the butt, literally!, so I think I am going to be happy with my decision to go back to an ostomy. Haha I didn't know how to phrase it when I wanted to know if the surgeon was going to sew up my butt but yes he does that! Pouchomarx- Cataja is right when she says that a temp ileo is different than a permanent. I HATED my temp ileo but that's because I was having body issues and was so afraid to tell people about what I had or what I was going through. [ more ]
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J-Pouch ForumsGeneral Discussion
I'm pretty sure there are Pentasa branded 5-ASA suppositories that are sold outside the US (in addition to Canasa brand, and in addition to the Pentasa brand oral 5-ASA), and the OP is in Canada. [ more ]
When I read Canasa in the second post I thought suppository AND the topic name is suppository. If you are takin medications orally Please do not use personal lubricants! [ more ]
I use Pentassa. Yes they r a little big but I have no trouble with them. They r oral pills btw. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thanks, I made it through and am doing well at home now. I'm definitely recovering faster than I did from my emergency colectomy a year ago because I was already so sick before that surgery AND 5 months pregnant. I'm still struggling a bit with staying hydrated, but my appetite has come back so that's helping thicken things up. This new loop ileostomy stoma is a big pain because it's almost flush with my stomach, but I'm learning to deal with it. I have my takedown scheduled for early June,... [ more ]
Thanks Bean! I hope everything went well and you're recovering comfortably today [ more ]
Liz, I just got quickly sucked into your blog and have bookmarked it to read while I'm recovering. Thanks for helping me not feel so alone right now. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
I think it sounds like a partial obstruction. They are more common when you are pregnant. When you feel it coming on, just be sure to keep pushing liquids. My general rule is that if I start to feel full or nauseous then to stop eating and do liquids only. If I'm feeling a pain but still feeling hungry and not bloated, I will continue eating but pushing a lot more liquids. Since my obstructions in December, this has been working for me. Just follow what your body is telling you. Small,... [ more ]
Also, I would love suggestions on diet and what to eat and what not to eat. I know it's pretty individual but I'm struggling and I don't think I can do this weekly for the next nine weeks. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I'm seeing my surgeon on the 24th of this month. It's still hard for me to go (only going about twice daily and have to strain) and I still feel crappy (headaches, trouble sleeping, nausea) I stopped taking the Miralax because I was feeling so nauseated. Now I'm just not sure what is nerves and what is actually wrong because I've been so stressed about not being able to go and in pain. [ more ]
I would get a second opinion. [ more ]
Thank you guys. My pouch is only 3 years old, but my previous surgeries/ removal of the colon was 6 years ago. I've never had this problem before, even when I was on pain meds. I try to stay away from things that I know are definitely going to cause me problems (such as corn). My GI doc told me not to take MOM, not really sure why though. I've been trying to increase my fluid intake by also drinking more juices (which helped in the past, before my surgeries) I just hate taking anything... [ more ]
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J-Pouch ForumsGeneral Discussion
Not all Cohns patients have bleeding. Three family members down the block from me have Crohn's, and none have blood in the stool as an issue. [ more ]
I have had a jpouch for three years with many troubles from the get go also. I was just diagnosed with eosinophils in my recent scopes ( small intestine tissue injury). I have chronic inflammation in my pouch but no Crohn's disease diagnosis, at least not yet. I too am very adverse to steroids but have been recently prescribed entecort which is not readily absorbed by the bloodstream and has less side effects. I have been in cipro almost constantly for the last two years. I know it us very... [ more ]
There are numerous medications that can get Crohn's under control (not just prednisone), and plenty of successful J-pouchers with Crohn's. You're going through a rough patch, but that's most likely because your Crohn's isn't (yet!) being treated effectively. Things should get better soon, once the right medications get worked out. I'm glad you at least have a diagnosis to explain your problems, since that opens up so many treatment possibilities. [ more ]
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J-Pouch ForumsPouchitis
J-Pouch ForumsGeneral Discussion
OK thanks for the replies. Didn't know it could be treated so well. Will get onto doctor about getting a script for it so I can carry it around with me. Thanks again [ more ]
I've been traveling abroad, engaging in 100-200 mile hikes on those trips, for over 10 years with my jpouch. I have never purchased travel insurance. I do carry an Rx of Flagyl and an Rx of Cipro with me as a precaution. I have never needed it but it's reassuring to know that I have it. Sue [ more ]
Pouchitis (if it occurs) is not a cause for trip cancellation or evacuation. It tends to come on slowly, and is usually easy to treat. It's a reason to start Cipro or Flagyl, which typically give excellent results within a day or two. IMO it's not even a reason for travel insurance. Since you'll be backpacking, and medical care may be hard to get to, what you could do as a very different sort of insurance is ask your doc for a Cipro Rx, along with instructions about the circumstances under... [ more ]
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J-Pouch ForumsGeneral Discussion
I had my takedown one year ago. Since that time I have experienced multiple obstructions and hospitalizations. Finally my surgeon referred me back to my gastroenterologist for a scope. Turns out I had severe anastomosis stricturing and pouchitis. My gastroenterologist was simply able to enlarge the stricture with the scope; no surgery required. However, the stricturing would return after a month or so. After my most recent scope, the doctor had me self dilate with a stainless steel rod. Not... [ more ]
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J-Pouch ForumsHelp! Need advice now!
My ferritin hovers around 5-8 (on a good day). I have had several iron infusions and they help for a few months. It takes 4 hours for each infusion as they can cause allergic reactions and they have to be run slowly. I really hope you can get one set up quickly. It will take absolutely forever to get your Fe. up any other way. [ more ]
I have problems with low iron. My GI doctor has me take Ferrous Gluconate Iron. The pharmacy has to order it for me. It is over the counter. [ more ]
I am also anemic and get IV ferraHeme every 4-6 months from a hemotologist. When my ferritin starts going down, it's usually time to get another infusion. I usually get a blood test every 3-4 months to keep on top of the ferritin levels. My anemia showed up one year after my BCIR surgery. Pills gave me terrible cramps. The ferraheme is a "push" IV, takes about 15 minutes since they give saline with it. The recommended dose is 2 treatments one week apart. Your ferritin level sounds very low,... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thank you so much [ more ]
The key to getting Social Security Disability is a well written doctor’s report and supporting medical records. You will need to prove that your medical condition prevents you from performing any job for which you are qualified, not just your current job. I suggest that you get a book entitled, “Nolo’s Guide to Social Security Disability” through Amazon.com for authoritative information on this subject. Since SSA disability benefits are unlikely to cover all your family’s living costs (and... [ more ]
I am not on disability, but have a few friends who are receiving benefits. It can be rather difficult to get the benefits. First of all, make sure you have a doctor who will support you. Then you will need a lawyer. Actually, it's best to hire one of those firms you see on TV. They specialize disability claims. It usually takes 2 or 3 attempts to win your claim. They don't get paid until you get paid. So, you have that in your favor. Try and find someone in your area who is getting benefits. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
scallop that is so interesting cc was able to distinguish that from say just a zillion other reasons..i have had pouchitis or now diagnosed as bacteria overgrowth so i think everything related to that..i also experience burning from time to time when i go,not completely emptying,going a lot at night and so on with above or diet..its crazy how many things that be going wrong with the pouch..yikes!!and hells,bells these are he less serious!!!! [ more ]
Hello, first time here, I've had my j pouch for 8 yrs and I also have difficulty emptying from time to time, I've always called this 'being blocked'. This almost always happens after I've eaten too much pasta or breadie foods, I know it sounds weird but I was wondering if anyone else experienced this after eating certain foods ? Its like walking on the blade of a knife i.e.: too much this way or too much that way can have severe consequences. Its maddening and drives me up a wall [ more ]
Jenni Gablesberg in Torrance California (near LA) helped my 13 year old son with J pouch with this issue. (310) 370-1200 She is a lovely person and has a lot of training. jenni@womens-advantage.com [ more ]
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J-Pouch ForumsGeneral Discussion
never have slept through the night average is 3 times but i go to bed late so if you start from earlier going to bed time could be more.. i just do it but i am also retired and so things often seem better in morning so i generally get up later..i need a lot of sleep so earliest i get up 9:30..sometimes later to make up interrupted sleep.. if you have not tried it how about imodium starting in early evening you can take up to 8 i believe ..so maybe 3 or so to start..jan says as you build up... [ more ]
It doesn't have to be painful to be pouchitis (mine never is). I don't think it's even typical for pouchitis to be painful. [ more ]
I will say that there is no pain associated with it (so not likely pouchitis), and this only happens at night. (Although in a scope a year ago for nausea...he diagnosed me with gastritis but did say there was a bit of inflammation. [ more ]
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J-Pouch ForumsPouchitis
bet you have not tried the elimination diet yet.sounds like you had a great run 20 years but things change for everyone for all kinds of illnesses etc.. sure i was disappointed that i would after surgery require almost all drugs i used with uc and more or that i felt as bad as i did with my colitis just different bad..but i am persistent had to get over the outcome i expected and deal with what i have..eventually i discovered antibiotics to control my severe issues..did it in a... [ more ]
I am glad you posted this question as it is one that is on my mind too. I have needed to rotate antibiotics for 4 years for pouchitis. Even with all of this medication, I also have a lot of issues with itching in the cuff and the skin surrounding the rectum. Despite my frustration I am not willing to go through another major, risky surgery. Given I have a lot of skin issues now, I would worry I might have them with an ostomy site as well. When I learned 4 years ago that my colon had to be... [ more ]
I'll chime in to say that my jpouch has been awesome for the last 14 years and even though I'm having a little trouble lately with either upstream intestinal issues or pouchitis (not entirely sure yet - I just started a thread seeking opinions), it's still waaaayyyy better than my UC days (unremissive, medicinally managed to 5-8 painful stools a day, 24/7 with occasional hospitalization needed for antis and fluids) and waaayyy better than the interim bag. I'm thinking there are a ton of... [ more ]
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J-Pouch ForumsPouchitis
daffodilly you are another confirmation on improvement with diet and in your case pouchitis.. wow listen up jpouchers with pouchitis we really may have found an answer to control overgrowth without seriously bad drugs!!!maybe seems impossible but just imagine pouchitis or overgrowth by changing diet..i am on scd because trying to hold on to my fruits if i can ..keto eliminates them..interesting the different thoughts on that one aspect..but one can tweak that if one manages low cargo,no... [ more ]
I have been following a low carb, high fat diet since February. It has worked absolute wonders on my blood sugar control (Type 1 diabetic) and helped me get off antibiotics for pouchitis. This diet can be found on ruled.me. Or Dr. Bernstein's "Diabetes Solution". It is often called the Keto or Ketogenic diet. Varies a bit for people but basically no grains, starchy veges, or fruits. 75% fat, 20% protein, 5% carbs. SCD allows some fruit and honey. Keto does not. Keto allows whole fat dairy... [ more ]
yeh strange isn`t it.. problems usually start early evening through early morning..i would say same with me..i do no think i have adhesions so perhaps thats the added factor?can that be corrected? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Daffodilly, Thank you for your post. I once again have Pouchitis and am so sick of these meds that the Flagyl taste is disgusting. I have cut down on my carbs and I still need work to do on my own personal diet. Your right, it takes a lot of work and for me discipline. I try and stick to fish, chicken and meat with cooked carrots and green beans but still, I need to cut down on my junk food if not eliminate them. I even cut down on my pasts by a lot as compared to what I used to eat which... [ more ]
I have had Type 1 diabetes for 35 years and UC. Since J-pouch surgery 4 years ago I have been on rotation of antibiotics. Whenever I would try to stop the antibiotics, symptoms returned. On Feb. 18th I started a low carb, high fat diet (go to ruled.me) to control my blood sugars. It is the first time ever I have been able to have good, stable BS!!!! AND, and this almost makes me cry because I am so happy, I have been able to stop taking all antibiotics. No more pouchitis!!!! I also take... [ more ]
Jan, My diet is getting more limited. When I do eat pretzals, its gluten free so I forgot to mention that from my last post. However, now I have to watch that too because they added Corn Starch and I should stay away from corn. Aside from Gluten Free Pretzals, I also love Doritos but never buy them for the most part. And I also crave salt. I wish I could eat peanuts as peanuts are the only nuts I crave. But I can't. I wish I tolerated Nuts like you but I know if I buy them, I would eat 8 0z... [ more ]
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J-Pouch ForumsFAP Forum
First of all, if your doing a FULL prep for Scopes, particularily lower scopes, that's crazy and really unnecessary. You will dehydrate yourself. Stop doing FULL prep. Take some Milk of Magensia (MOM) and that'll do the trick pretty well in combination with going to a clear, liquid diet about 12 hours before scopes. Take an enema or two before you go as well. She does have adenomas in her pouch, they just deal with them as they arise. We have the same GI at Mayo, simply removes them and... [ more ]
charlie, thanks for the conversation. does your friend have adenomas polyps in her jpouch specifically or different kind? the surgeon in 2001 who did my surgery told us, my mother heard with her own 2 ears as well that they can be removed once they developed and that is not a necessary pre-cursor toward cancer evolving in future. that said my gastro doc is from another school where he pushes the surgical approach/or throws it at his patients so to speak. i am getting my jpouch scoped and... [ more ]
Len, Whether the the procedure was hand sewn or not I don't think makes much of a difference. Polyps would show up either way, the mucosectomy (I think and from what I've read) would have no bearing on whether you get polyps in the cuff, etc... I have had polyps removed and had them come right back in the same spot as before. The watery discharge may very well be due, in part, to what your saying. Sounds logical. I have a friend who has polyps in her pouch, they are just managed and watched... [ more ]
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J-Pouch ForumsGeneral Discussion
Yes they can, though sometimes due to adhesions or scar tissue it may not allow them to, as being you've had surgery they will try I'm sure to do it.......if your life gets in danger they will open you up. [ more ]
Hi Kk, I have a k pouch but have had my valve prolapse out of my pouch on a few occasions(mine was due to peristomal hernias)...initially my pouch surgeon tried open surgery but in the long run the problem returned...then my surgeon here who is a specialist in laporoscopic surgeries did it that way and it held nicely (have had to have a few done that way)... basically he says that most of 'that' sort of surgery can be done this way...you may need a specialist or at least have your pouch... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Just to add to above- I wanted doctor who had lots experience and done hundreds of these surgeries. Don't be afraid to ask the hard questions as you're interviewing doctors! [ more ]
I started with US News and World Reports Top Hospitals, Top Docs. I think they changed it this year but I looked up those for past several years as a starting point. On each hospitals website, I found docs specific to my needs- gastroenterologist, as well as surgeons, all have their areas of interest/ expertise. Then I continued to search online using other sources. I planned to meet with several doctors to choose the one I trusted, starting with ones my insurance covered, but found my... [ more ]
There is a link "Find a Surgeon" on the cover page of this site. It's the ASCRS = American Society of Colan & Rectal Surgeons. This may be a good place to start. My new surgeon was listed and he is a top Boston doc who is doing surgery on me next week. I feel confident I am in good hands. Hope this helps and good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
OK, be very gently with the butt wound. In the morning I would let warm water in the shower wash over it, no soap. Then at night I would use a squirt bottle, again just with warm water, to clean it. I would very gently dab the area dry with gauze. I had dissolvable sutures, and was told no baths, and other than warm water twice a day, not to clean it with anything. We didn't want the sutures to dissolve before the area was healed. It took about 6 weeks for the sutures to all dissolve, and... [ more ]
Sorry yes I mean the perineal wound, I'm so glad to hear it'll get less swollen over time. Do you have any advice on aftercare for it, I wasn't told much from the hospital. Its very sore the more I move around and I'm trying to be as careful as I can with steps and bending down etc cos I'm worried I'll end up opening the wound. At the moment its clean apart from a slight bit of discharge and seems to be a healthy colour. I was told to blast it with the shower once or twice a day to clean it,... [ more ]
Hi, are you referring to your butt wound? My butt wound looked like a thick, bumpy worm for a few months as it healed, it was very swollen. It became a flat line and hardly looks any different from before surgery around 4 to 5 months post op. Yes, it is important to keep it clean and dry, the perianal wound is one of the most difficult to heal, but for me, I had no issues. I wish the same for you If you are referring to your abdo incision, mine was opened up after they pulled out the staples... [ more ]
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J-Pouch ForumsGeneral Discussion
http://www.mayoclinic.org/symp.../causes/sym-20050752 I know I don't understand this jeanne. I looked it up and of the many scary things I found that it could be linked to, I found UC on this Mayo Clinic site. So, if it is at your rectal cuff where your UC is, is it something worse? I'm thinking it is or you wouldn't have posted this. P.S. Crohn's is on the list too [ more ]
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J-Pouch ForumsGeneral Discussion
I am so sorry for your diagnosis and am assuming the underlying problem is cancer of some kind. I'm also sure you are exploring options like freezing your sperm, like Lance Armstrong did. He fathered his children this way after his prostrate cancer. It's not always so easy for a woman to conceive. I was lucky to be a fertile in my 20's, as I had to have my equipment removed at 40. We never know, life has a way of messing up my plans anyway. I am curious, did Humira or any biologic... [ more ]
Did you have the option for the mucosectomy prior to the way your cuff looks now? I am confused as my cuff was severely inflamed. My surgeon said it was an 8 out of 10 and I was still offered advancement. Can anything rectal help you at all? Also is Humera is controlling your symptoms and you have no visible inflammation (pouch or cuff), I am confused as to why recommendation for surgery. I understand if the cancer concern is the reason for your surgery. How are your symptoms? When my cuff... [ more ]
A mucosectomy is not an option unfortunately due to the severity of disease. I am using Humira which is working great on the whole as I haven't had an abcess or external inflammation since. Surgeon explained that Humira is masking what is going on inside. Take care and keep us posted [ more ]
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J-Pouch ForumsGeneral Discussion
Glad it went away, though sounds like some sort of abcess. [ more ]
Well thank God, my little lump just disappeared. Went as quickly as it came on. Never did hurt, and I just procrastinated about getting a referral to a colo-rectal surgeon. In the meantime it just went away and hasn't returned. I think Jan was right from the outset: some kind of hemorrhoid. It's been almost a month and all is quiet on the southern front (or back, that is). [ more ]
Deathstalker, you are right. Abscesses can be painless in the earlier stages and they can go from barely noticeable to very painful practically overnight. Plus, it could be quietly causing a fistula without symptoms. It all depends on where it is located and if there are pain sensors in that area. Once you get above the dentate line (where the anal ends), there are no pain sensors. That's why internal hemorrhoids don't hurt like externals. And yes! Being a diabetic, you don't want to mess... [ more ]
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J-Pouch ForumsGeneral Discussion
1) Around 4 or 5 times a day 2) You can shower with the bag on or off, no problem. I found that output usually stopped once water hit the stoma 3) Yes, in my case all pain was removed, and I'd say in most cases all pain is relieved 4) never heard of that happening 5) Was arguably the most annoying thing with the stoma, it always made loud noises especially in quiet places ha! 6) No, no one would know unless you told them. 7) I went through this at 16, and I'll admit it was difficult but if... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Scott, Yes its the Flagyl which I have to take 3 x a day. I take it with food and use Almond Milk to swallow it but it is so gross and disgusting that nothing taste good no matter what I eat. I wonder if they can make this in a flavored liquid meds instead of a pill? Rocket [ more ]
Flagyl has a very unpleasant taste. Cipro has no taste that I can detect, and has caused no problems for me. If a medicine gives you a bellyache then taking it with (compatible) food often solves the problem. [ more ]
Scott, Glad to hear Cipro works for you. Doesn't that drug make you sick to your stomach though? Or maybe its the Flagyl. Rocket [ more ]
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J-Pouch ForumsHelp! Need advice now!
Slinky, I just had my takedown March 14 after 2 months with loop ileo, that also had very fast transit and was all liquid. I had complications with blockages so could only consume liquids and luckily had TPN for nutrition and fluids. However, despite all liquid with loop ileo, my output now is controllable. At times it is all liquid, but still controllable! That surprised me! I am working with nurse to reduce # outputs per day, by solidifying. I take max dose Immodium, but I'm able to eat... [ more ]
Ugg, I had fast transit time too. I had mine for a year and had a water bottle constantly by my side as I quickly dehydrated. My system finally settled down right before my takedown, go figure. I agree! another opinion, after takedown things were better. [ more ]
Thank you Liz11, I have noticed I can not drink hot liquids!or drink with my meals. I wish I would have found this forum earlier! I have been checked for C-diff multiple times and SIBO and both have been negative. I will try what you suggest. I have not tried benafiber. I have cut out all sugar, and have been gluten free for 5 years. Thanks for your help! Jeanie [ more ]
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J-Pouch ForumsPouchitis
jeane just read this earlier thread of yours..you are in such constant pain and discomfort please try not to add the worry of having to be on antibiotics long term..if it brings you relief you need to use it..i was on the antibiotics 6 years constantly never off..i needed to be able to function and thought less about constant use of antibiotics..ct barrister has been on them for 18 years...my only suggestion is change from cipro to another antibiotic because cipro known to contribute to... [ more ]
Seems I have joint pain even off cipro. Doctor's think it is more IBD related arthritis as arthritis runs in our family and my dad, who had a colectomy for UC, has had bothersome arthritis for several years. I just bought some joint vitamins ( forgot name ) to see if helps. [ more ]
alleycat have you made a turn for the better as per your april 8th thread?so diet maybe helping i hope..if we have bacteria overgrowth it makes real sense it will help because we are not feeding the bacteria which is one of the issues maybe not all but one of the main issues we have..glad you have realized you have to eliminate totally not low this or that..because we cannot fool our body!!!however,for me its tricky eliminating those few things that slip by that might have some sugar..like... [ more ]
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J-Pouch ForumsGeneral Discussion
Nah. I have leaked from day one. I wish it was something easily diagnosed. But nothing is that easy in my life. Haha. I have a dr appt in a week and will bring it up and post the results here...if any results are found....I have alot of questions wrote down that's for sure. [ more ]
I tend to leak when I have active pouchitis. It's not the only cause of leakage, but it's worth considering. [ more ]
Thanks. No lifting limits. Cannot do that. As for diapers I wear pads at night. Nothing big enough comes out to have to wear those. I wear pads all day as I leak most everyday all day..there again not large amounts just enough to have to wear them. I hope that the leaking part gets better. Richard. [ more ]
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J-Pouch ForumsPouchitis
I tried Cipro both ways: 250 mg twice a day, and 500 mg once a day. For me, at least, they were equally effective. [ more ]
hurrah if you are seeing some improvement on diet,and imodium..hoping you have given diet a long enough time to balance things out a bit..not sure what that is but i was doing it for about three months before i backed off antibiotics..also although i am not jan i am going to put my two cents in and say i would just cut back to one cipro a day..do not think the half of two 2 times a day will make a difference and its a lot easier! [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchomarx, My fistulotomy was an anal abscess and fortunately there was not tract to my pouch. I can't imagine going through what you're going through. That's tough. I just asked my surgeon to switch me off of flagyl and to ceftin, which I can tolerate much better. I'm also feeling really fatigued. Just excessively tired. It's just odd because the incision was big but nothing like the J-Pouch surgeries I had and yet, I'm feeling run down, etc. Hopefully, it's the flagyl. I guess time will... [ more ]
i had to go back to temp ileo due to leak and infection in my spine. I am on cipro 750 mg twice a day, Flagyl 500mg three times a day and Diflucan 400mg once a day for a full month after hospital stay. i have a week to go and i feel really run down and tired, im sure its from all these antibiotics. One week to go and we will see how i feel off of them [ more ]
Nothing? [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchomarx, it is my understanding that Cleveland Clinic is the best place to go for J pouch problems and you are fortunate to live nearby. As far as the K pouch and BCIR are concerned, there are relatively few surgeons doing it. I cannot see these procedures “fading away” since they provide folks an alternative to having the bag with its associated issues. I believe these procedures would be more widely utilized if more people and their doctors knew that they existed. Marianne, the BCIR is... [ more ]
I think the BCIR may be an "updated" version of the k pouch but I am not positive. [ more ]
Dr. Joel Bauer in NYC (Manhattan) is skilled in the kock pouch procedure and still doing them. That's not in your back yard but if you go for this you want the person who has done the most k pouches so it would be worth it to check him out. Manhattan Surgical Associates 25 E 69th St. #1 New York, NY 10021 212-517-8600 [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thank you so much for that advice. I shall try to use your "technique". I appreciate you taking the time to answer my questions Kitty [ more ]
I've had several surgeries without issue. I do have weak sphincters/incontinence, which is exacerbated when my system is "empty" so I let them know that when I am in pre-op. I usually compensate by tucking a cotton ball up there and keeping underwear and a pad on where normally they might have a person sans undies in pre-op, until they absolutely must take them off (like to put a cath in or something). If there is a little leaking or mess, that is what those blue chuks are for I just let... [ more ]
Thank you very much for that information. I am feeling less anxious. Kitty [ more ]
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J-Pouch ForumsK-Pouch Korner
J-Pouch ForumsGeneral Discussion
Had mesh put in during my incisional hernia repair in Dec. (8 months post TD). [ more ]
I was told obstruction can resolve itself. I had been getting sick at my stomach/some pain for yrs. but went away over night until the one time it didn't. bowel obstruction but actually did resolve itself while in hospital but still had surgery b/c doc felt scar tissue was causing the obstruction. got out of hospital/put on strict diet for a few wks. then had surgery to remove scar tissue/j pouch prolapse which was told not real common but does happen and do not strain. When did they use... [ more ]
Lesandiego, I ate ANYTHInG I wanted for 20 years, and can't anymore. Nuts, seeds, mushrooms now are o-u-t these days. They just want to get stuck at the outlet too much these days. It's too risky. Just know, your body can change. Mine did. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
good fatty foods that most pouches tolerate are creamy peanut butter, avocado, full fat yogurt, cheese, and breads. i second the potato chips...my system loves the salt. however, i have to stay away from the sweets...no rice krispie treats for me :-) [ more ]
Congratulations on doing so well I suggest that you eat more often than 3 times a day. It's better for your new plumbing and you might be able to get in some extra calories in there too. I find potato chips, in moderation, are a good snack as they give me salt for hydration and my pouch seems to love them. I also eat Greek yogurt during the day and everyone is going to kill me for this one - rice krispie treats. Yes they have sugar but they also have marshmallows which help firm up... [ more ]
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J-Pouch ForumsGeneral Discussion
Yes..exactly where I have my issues...at the pouch connection and below the remaining anal canal. Cipro does help my symptoms as well ass rectal canasa. Just a thought. Wonder of when surgeons do this operation, they can pull back a bit more of the iliem that is immediately connected to the colon to avoid these issues in the lower pouch where connected, but the remaining cuff may always present issues for some of us. [ more ]
Most of my inflammation (pouchitis)has been in the part said was left to connect. Now more problems at the end called cuffitis. Just another itus. GI told me it does not specifi a certain type of inflammation so quess they call it according to where it is located. [ more ]
I seem to be experiencing the same issue you have but for longer. I require dilations every six months as I have cuffitis and pouchitis in the distal pouch. I take cipro continually as without it I always have burning and discomfort in my anal area that is unbearable. This has also caused me fissures at times. Have you had your pouch looked at and biopsied? That would tell them if you have pouchitis. Many of us alo have low iron (me being on of them too). I am taking supplements now. Also if... [ more ]
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J-Pouch ForumsGeneral Discussion
There is a lapse in getting them at some pharmacies. One couldn't fill it for me, and another just down the road gave me four vials at a time. They get back ordered it seems. [ more ]
Rachael is talking about having a false High B12 level and the reason why some of us might need special testing that have those readings Scott. I understand what you are talking about but this is not a discussion about a "normal" situation. [ more ]
It takes a long time to become B12 deficient. If you've gotten your levels back to normal a lapse of even a couple of months will probably not have a very large effect. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Interesting.I have looks like gathered skin never noticed in that area. So far not causing any problems that I know but have wandered if it keeps getting closer/closer to vagina area what problems it will cause. I did have some issues of somewhat pain during sex.Not sure if it had to do w/bowels were attached to female area. I had pelvic floor rehab. for not being able to empty. Common for all women as get older. Surgery was in 2009 and so far no issue except seeing that shrivled looking... [ more ]
I found out that the pain is from the muscles. [ more ]
I am going to see a pelvic floor physical therapist today. I hope this will help. I am pretty sure the scar tissue must be stretched out. I had to go years ago because I was having problems with stool leakage. At that time the PT told me I had a lot of scar tissue in the vaginal area too. [ more ]
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J-Pouch ForumsHelp! Need advice now!
probably yeast infection. I am given flucanole b/c going to bathroom so much can not keep anything on me. [ more ]
To clarify the steroid cream I was talking about above. It is very weak steroid wise, OTC Hydrocortisone Cream for "fast itch and rash relief" has 1% of hydrocortisone in it. My doctor has said It's ok to use. I haven't had a problem for a while but worked. A very little bit works well and I did not use it in the anal area, I used calmoseptine there. As I described above I have also used a tiny bit of the estrogen prescription medication, for my internal female drying problem, helped the... [ more ]
Thanks! I'll keep that in mind! [ more ]
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J-Pouch ForumsGeneral Discussion
Hi Rem, thanks so much for the reply, im hoping to start the process in may, they've told me my j pouch procedure is a long shot but to try these therapies and see if they help, if you dont mind me asking did you have trouble with anal muscle strength and so did the biofeedback and pt? the hospital told me my muscles are shockingly weak :/ [ more ]
Hi Sally85, I had biofeedback and pt both before and after the takedown surgery. It definitely can't hurt. I haven't kept up on my exercises and still have problems once and a while. But if I were you I would do anything to help strengthen them. Good Luck. [ more ]
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J-Pouch ForumsGeneral Discussion
I use Culturelle capsules and Activia yogurt. I have to be careful not to overdo on these; seems to give me problems. (I had my takedown in Feb 2007) Good Luck, Mark [ more ]
I'm a bit surprised your GI would say you don't need one; I think all of us probably should be taking probiotics, pouch or otherwise. Currently I take Align, and have done so for the past 6 months. I'm actually quite happy with it and believe it has helped, particularly with reduction of gas. Previously I was taking the Jaimeson 4-strain probiotic, which is about 1/2 the cost of Align. While I didn't notice any negative side effects with that one, it seemed to make absolutely no difference... [ more ]
I also take VSL#3DS prescription strength. I mix one packet with a very small amount of water each day and drink it down. It doesn't really taste like much - its pretty easy to do. My doctor recommended it and it says on the packet that it is for UC and pouch maintenance. It is expensive but my insurance pays for it. My copay is $75 for a 3-month supply. [ more ]
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J-Pouch ForumsGeneral Discussion
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I often used plain zinc oxide, which worked fine. I had a preference for Ferguson Formula, which is like a very mild version of Calmoseptine. It's hard to find, though, and I seem to be the only person here who's ever used it. I use the past tense because I haven't needed any of this in years. [ more ]
Straight zinc oxide. Works great, easy to find and cheap. [ 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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