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J-Pouch ForumsGeneral Discussion
Poterntial job offer, but between surgeries, what to do?
S shnwilkins
shnwilkins Well the job I am interviewing for was ranked the top place to work in the area that I live so I am hopeful that if I get the offer that they will hold the position open for me. I have exhausted my family and medical leave act time from my old job so I do not know if that will affect my chances. [ more ]
JeffDC Agreed with Suebear. It is common that offer letters have stipulations for upcoming events. Just be upfront and don't give the new company any surprises. [ more ]
suebear I have over 300 employees; there are not too many candidates I hire that don't have some type of previously scheduled commitment that will impact their new job. Weddings, travel, medical, you name it. I realize this and never deny them what they need to take care of. I believe a good employer will work around your needs, but I wouldn't mention it until after you have been offered the job. You really don't want to work for a company that would either not hire you because of this. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Skin disorders- sweets disease?
W ween
Mhg26 Hi ween, sorry to hear about the Sweet's disease. I haven't actually heard of it before reading your post. I knew certain skin conditions could be associated with IBD but I wasn't aware of Sweet's. I just wanted to say that I myself also deal with a mild form of seborrhoeic dermatitis. I'm thinking it definitely is related to the IBD and it makes sense since doctors think it stems from an autoimmune origin. I use a prescribed topical ointment called Promiseb and it seems to work well when... [ more ]
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J-Pouch ForumsGeneral Discussion
Still UC?
heverhever
TE Marie Must be stupid. They ask if you have had any stomach, intestinal issues blah blah bleeding issues etc. on life insurance forms. I wonder if their wording is similar? Probably a 12 year old clerk and not a real underwriter. [ more ]
hever Thanks everyone for your reply, I have asked countless times on the phone and via email for the travel agent to confirm back that I am covered for UC but they're a hopeless case, so have settled for adhesions/bowel blockage which they have confirmed in writing, so I hope its going to be OK. I really can't understand what is so hard to understand, I only wanted it confirmed that UC was the original condition, they must be dense!! Heather [ more ]
TE Marie I'm still listed as having it with my doctors plus I do still have it in the form of cuffitis. The pathology reports of my rectal cuff biopsies say I have UC. I, for one, am not "cured". [ more ]
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J-Pouch ForumsGeneral Discussion
Recovery Time for Seton Implant?
D DeathStalker
DeathStalker Thought I was getting the seton implant today but my surgeon went in and opened up the area more. I guess he said though it was a deep abscess, it wasn't a fistula. I hope he's right...From the looks of it and from feeling around down there, it does appear that the nodule is gone, replaced by a pit. Got my on Flagyl to dry it up. Hopefully, this is the end of this ordeal. [ more ]
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J-Pouch ForumsGeneral Discussion
Ulcers in J-Pouch resulting in serious gastric bleed
B BethG1983
BethG1983 I begin Remicade infusions within the next week or two. Hopeful that all goes well and that I suffer no ill effects from the treatment. Is anyone familiar with daily injections? Someone mentioned this to me and I was unfamiliar with it. Thanks. [ more ]
Scott F Ulcers occasionally pick an inconvenient spot to form, and erode a big enough blood vessel to cause a significant bleed. I'm guessing that's what may have happened to you. If that's the case, the bleed doesn't mean anything beyond the fact that you have ulceration. So regardless of the diagnosis, if you find a way to get the ulcers under good control then you shouldn't have a recurrence. Good luck! [ more ]
BethG1983 Well - just to update - I had yet another scope today for a second opinion regarding my Crohns diagnosis in January. The ulcerations in pouch looked to be healing, except for two particularly stubborn ones at the anastamosis site. I am still tapering off prednisone and using the Rowasa enemas. This doc said that it is "indeterminate" and took biopsies, but says that this may or may not be Crohns. Doc says that I will just have to be monitored the next six months, and that starting on 6MP or... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch Failure
MysticobraMysticobra
Mysticobra I have taken all those. metamucal give me diarrhea and more leakage. Right now I am in a great deal of pain. It feels like a blockage although small amounts are moving thru. If I stand the pain is worse and I double over. I have not noticed any changes in what I eat compared to my leakage. I seem to....no other way to say it....I feel like a poop conveyor. It's constant. Sorry to bug you guys with my problems. I don't know what to do. I have and am taking lomital. Surgeon has given me... [ more ]
TE Marie About your butt burn, the big BB, and leakage, has your surgeon given you any suggestions for this? Have you been or do you use Metamucil, or something like it, and/or Imodium, or something like it? I won't go into any details about using them now as am assuming that your surgeon, like mine, did have you use them. I have all of my follow-up care with my GI and am still taking up to 8 Loperamide's daily, which is prescription Imodium, as I have IPS - which is like IBS. I think it is a good... [ more ]
Scott F It's much clearer to talk about leakage than "pouch failure." Have you tried a thickener to add bulk to the stool? These include things like Metamucil, Konsyl, Benefiber, and Citrucel. Are you using a bowel slower, like Imodium or Lomotil? Have you done kegels regularly? Have you noticed any connection between your diet and leakage? --Scott [ more ]
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J-Pouch ForumsGeneral Discussion
Stricture ?
M Monkeyme
jeane Jpouchmike, My GI will do a manual finger dilation under anesthesia at the time of my pouch scope. I have been having these every six months for the last couple of to keep the anastomodis from narrowing. It's either this approach or pouch advancement surgery which I am trying very hard to avoid. [ more ]
rachelraven I had a dilation under anesthesia. He used a large proctoscope to open up the anal canal stricture/stenosis. Had to have a few of them to keep things open. Seem to be doing ok with it, nearly a year later, without another dilation. Some docs will do finger dilations in the office, but my surgeon won't. Says it's too uncomfortable for BOTH of us. lol [ more ]
jpouchmike jeane, what's involved in a dilation? [ more ]
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J-Pouch ForumsGeneral Discussion
A question I probably know the answer to
A Amstobar
mgmt10 I'm going on four years with my j pouch. I eat pretty much the same things every day. I can tell you for me no two days are the same. Some days I use the bathroom as little as 3 times and some days as many as 10. I average about 5x a day. But my consistency is always different too. There's no rhyme or reason to it it seems. That being said, it never interferes with my day. There is never any urgency. [ more ]
TinCan It sounds like you are doing quite well to me. In fact, I'm rather envious of your situation as it can be much more challenging for folks. Hell, you seem to be doing better than me and I'm 2.5 years out from my reversal! So yes, based upon my experience I think you can expect greater predictability with time barring any setbacks. [ more ]
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J-Pouch ForumsGeneral Discussion
when to return to work after takedown
K kdmos75
rachelraven I was 19 the year I had my surgeries. I took off the spring and summer semesters, and returned for my fall semester good to go, had the takedown May 15, 1991. Could have definitely been ready to work by the 6 week mark. [ more ]
Scott F I was comfortable going back to work after the planned six weeks. I didn't have to stand in front of a classroom, but my frequency was quite manageable by then. Everyone's recovery is unique. [ more ]
heyitsles Hi, I went back after about a month, but only because I didn't have the sick time to take a longer period. My bowel movements were very, very frequent though, like 15 or more a day and several at night. I suggest really paying attention to the timing of when you need to use the washroom while you are off, especially in relation to when you eat. I always find right after I eat I have to go two or three times. Also think about the timing of your breaks at work, and if you could hold it if you... [ more ]
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J-Pouch ForumsGeneral Discussion
To keep the rectum or not?
S sally85
TE Marie You can have your colon removed and get a permanent ostomy for now. This doesn't mean that you can't get a j-pouch later correct? You would need to discuss this with your surgeon so that s/he would leave everything needed for a future potential j-pouch inside of your abdomen. [ more ]
sally85 Thanx for the replies guys, not really sure what to do, my brain was so set on having the j pouch done and so far the surgeon is advising against it Has anyone heard of or tired EMS? it works for urinary incontinence and apparently for fecal incontinence to? any ideas or experiences with using it?? [ more ]
rachelraven My doctor did a mucusectomy on my rectal cuff in 1991. I have never had any incontinence issues because of it, but he's a pretty adept surgeon. [ more ]
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J-Pouch ForumsGeneral Discussion
think its time to start bucket list
K kk
kk imagine that! my info works to reply to your message but didn't let me go to check my private messages. go figure. once I did it but not when trying again. sorry. email kkgerken@bellsouth.net [ more ]
Chuckus KK, I can email you..........email addy? You should be able to get your PM's via Top Left corner it says "go".........then look for "personal zone"..........then look for "private messaging" [ more ]
kk Chuckus/saw where you told me to check private message. can not get on it. not sure why but does not surprise me... will let me post/not look at message. went to new like explained. can you email me instead? THANKS!!!!!!!! [ more ]
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J-Pouch ForumsGeneral Discussion
Spinchter muscle problem!
S sally85
JJA I commented on your other thread, but I had my sphincter damagerd during surgery for an anal fistula. I was able to have a sphincter repair surgery to tighten the sphincters. (Basically they cut out the weak defect part and then take the good ends, overlap them a bit and sew tight). It helped greatly, although did not solve the problem entirely, although it helped enough that I was able to "manage" living with the incontinence. I assume they would first complete the tests you mention-I have... [ more ]
sally85 Sorry, typo i meant to write rectum not Recrimination :/ [ more ]
sally85 Also I totally forgot to ask, when I went to my hospital appointment the consultant told me that the recrimination is totally removed in the creation of the j pouch, but I'm confused because my normal hospital said that the rectum is retained and a mucostectomy is preformed, what actually happens?? [ more ]
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J-Pouch ForumsGeneral Discussion
Almost a year since my reversal
S Step
TinCan Pouchitis is a pretty distinct set of symptoms that can include the dreaded butt burn but is much more than that. In my case I have increased frequency, swelling in my left knee (and perhaps hands), and generally not feeling very good. My first bout was also accompanied by a fever. If you suspect pouchitis, then you need to get that checked. The only way I know to get a definitive answer is via a scope with biopsies. I actually go to both a surgeon for pouchitis and general follow-up work... [ more ]
Step I went to my regular doctor back in spetember complaining of joint pain, I can barely squeeze my hands shut in the mornings. the doc did some blood work and one of the inflammation test came back above normal. She had me re-tested in Novemeber and it again came back above normal and is now sending me to see a Arthritis doctor (this week) It took forever to get in to see this doctor. Now I think I am going to the wrong doctor, I should go back to my butt doctor to have him check my for... [ more ]
Step Thanks for the feedback TinCan. I can't believe someone understands how my legs feel. So I am not going crazy. I thought pouchitis was your butt itching. [ more ]
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J-Pouch ForumsGeneral Discussion
celiac disease after colon removed?
A AP
Jaypea A decent gastroenterologist can recognize Celiac disease when he/she looks at the gut with an endoscopy. There is a specific cell change that happens when one has Celiac disease. There are many people who are sensitive to gluten with out having the diagnosis of Celiac. [ more ]
Ryan Vallejo My mother just had part of her colon removed because she did not know until she was 58 that she had celiac disease. She, like many others was misdiagnosed her entire life. I found out when I was 35 that I had celiac. I got tired of doctors telling me to just take a pill for my stomach or some steroid cream for the rash (dermatitis herbafortis) which they said was eczema on my hands that had been getting worse and worse over the last 10 years. So I did my own research and I stopped eating... [ more ]
Jan Dollar My understanding is that celiac disease/gluten intolerance affects the small intestine villi, not the colonic mucosa, so definitely different than UC. That said, it is not uncommon to develop it later in life, after a UC diagnosis, or after colectomy. It has been underdiagnosed and misdiagnosed, but to my knowledge, you do not biopsy for it during colonoscopy. It is done via upper endoscopy (EGD). You have to be eating a high gluten diet for the blood test to be useful. Not sure about the... [ more ]
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J-Pouch ForumsGeneral Discussion
VSL #3 makes me sick?
MahshelleyMahshelley
TE Marie I have heard that it does cause gas. I've been taking it since the beginning of my take down, except when I take antibiotics, and do notice I have less gas but not take much. I personally like gas as it helps me clean out my pouch contents. Meaning I bend over when sitting on the throne after a BM for a bit and when I sit back up and have gas that "blows" the rest of the contents out. How are you taking it? You can spread it out and take it a couple of times a day. I mix mine with Greek... [ more ]
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J-Pouch ForumsGeneral Discussion
Possible fistula?
J jennym2
jennym2 going in for a LIFT procedure next Thursday for my fistula. Does anyone have any experience or know anything about it? [ more ]
jennym2 Also, not sure if anyone has experienced this. But since the seton placement, I have terrible abdominal pain every time I eat something. Not sure if this is related, or not. [ more ]
jennym2 loved by 2... that sounds awful! i'm so sorry you're going through all of that! I don't know anything about mushroom drains but I hope you get some relief quickly! N/A...thanks for the advice! I will look in to getting a bide. I think he wants to do a flap repair with a possible temp -illeostomy to keep things away from the area to let it heal. [ more ]
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J-Pouch ForumsGeneral Discussion
PPIs help with pouchitis
ElmerFuddElmerFudd
kk 1st time heard SIBO. If ulcers always seem to be in part left when connecting j-pouch. instead of pouchitis/could it be SIBO. Is it wrong to say the inflammation is not given a name when tested but doctors inflammation by name according to where the problem exist? I was taken/chewing antacid/seems to help consistency of stool(also indigestion) to come out better. Seems for one thing it is the reason for calcium deposit on breast/cause me to have further testing but ended up just calcium... [ more ]
TE Marie Thanks for the links Beckysmom, I know I have not been on this one! [ more ]
beckysmom Hi Marie, My daughter was trying FODMAP (Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyols) prior to this last surgery and will try it again after a few more weeks. It seemed to help with her bloating, but for now it's a post op diet for her. Here are a few links. http://shepherdworks.com.au/di...tion/low-fodmap-diet http://www.webmd.com/ibs/featu...ight-diet-ibs?page=2 Best to you. [ more ]
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J-Pouch ForumsGeneral Discussion
FAP Forum?
Jan DollarJan Dollar
Chuckus Thank you Jan! [ more ]
Jan Dollar Thanks for the input Charlie. I've created the forum and placed a "sticky" post as you suggested. Jan [ more ]
Chuckus Jan, I don't think it can hurt at all having a seperate forum here. If you do it, maybe you can "sticky" a post with the link and my info at the top so people can contact me/see the direct link to the site? Hope everyone is doing excellent. Charlie [ more ]
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J-Pouch ForumsGeneral Discussion
Pro's vs Cons?
K KatKane
Robert 1 Hello, I am from the UK, had my j pouch 10yrs, I personally agree with Mark, if your ok with the ileostomy bag then stay with it, I had the best 6 months with the bag before j pouch surgery, I didn't seem to get much option a letter to say you are booked in for the op and that was it, brilliant two years then pouchitis started, nothing but trouble since then including c-diff etc: Uk surgeons are now going away from j pouches so i am led to believe. They can be more trouble than they are... [ more ]
JJA My pouch was awesome for 7 years. Then an anal fistula and surgery to deal with it left my sphincters damaged, which made thisngs extra complicated with the pouch (fecal incontinence). Still I managed to manage it over the years until 3 years ago when I developed chronic pouchitis. I am taking a lot of meds nowadays, including antibiotics, entocort, and Immuran, but doing awesome. I still prefer this situation to going to an ostomy. I would still go for the pouch 100% even if I had it to do... [ more ]
MarkGregory My j pouch is kinda love hate relationship. When it is working right, then everything is wonderful. But when it is not and I am fighting pouchitis, it can be the most miserable time of my life. Probably the biggest con of the j pouch for me is that health wise, I have never, ever been as healthy with a j pouch, as I was with an illestomy. Further, I know that someday the pouch will have to be removed, since I can tell it is gradually failing me. The j pouch has been nice, in the part of not... [ more ]
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J-Pouch ForumsGeneral Discussion
Liquid intake advice
ccanepa456ccanepa456
Jan Dollar Absolutely! All fluids count, even those included in foods. I have soup as a main meal most days, and love it. Easy to digest, everything you need in one dish, and very satisfying. Jan [ more ]
Pluot Haha, my mom was the same way about fluids! If you don't want to drink (sometimes it just isn't appealing?) you can also get some of your hydration from liquidy foods like yogurt, applesauce, melons, soup, etc. [ more ]
Jan Dollar There really is no magic number in regard to the amount of fluids you need. The best guideline is the amount that keeps your urine output plentiful and dilute. So, basically, that means that if you are voiding 3-5 times a day, are not thirsty or feeling lightheaded, you are probably OK. If you are sweating or in a warm environment, you need extra fluids (everyone does!). Understand though that caffeine and sugary drinks (even Gatorade) can increase your stool output (and caffeine will... [ more ]
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J-Pouch ForumsGeneral Discussion
What to do Next?
D DeathStalker
DeathStalker They're leaning away from a fistulectomy and more towards seton placement. I've had good experience with seton placement in the past. Also, my surgeon doesn't really want to perform a fistuletomy if indeed I have Crohns because he fears it wouldn't heal. That being said, he wants to examine me under anesthesia on Thursday first before cutting, etc. I'm going to urge for the seton too based on my case history and previous success rate. [ more ]
L.DL With the experience Repair I had with fistulas repair, not knowing all the information I have now. I say make sure there know where the fistulas is located and not assume where it is before they start repairing. In my case they put in a seton, it had fallen out about 3-4 weeks later and then decided to repair. Unfortunately I was so focused at it being repaired, that I didn't ask more questions then that. Sadly I hadn't fallen on this forum yet It helps tremendously discussing our problems... [ more ]
DeathStalker I've had two setons in the past. I don't really mind them at all. Eventually, the tracts stopped draining. What I learned is that if you're going to have a seton, merseline is MUCH more comfortable than the rubber-band material. My first surgeon used the rubber band seton and it always chaffed the skin. With the merseline setons, you didn't even know they were there. [ more ]
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J-Pouch ForumsGeneral Discussion
Takedown mar 3
M Mon
Mon Thanks Liz! I will try to eat more protein. Hopefully that will do the trick. Monica [ more ]
Pluot It sounds like you aren't eating any protein at all. People always talk about how minor takedown is compared to the previous surgeries, but it is STILL an invasive surgical procedure, and your body needs protein to heal afterwards. It sounds like you are healing very slowly because your intake is low and what you do eat is only carbohydrates. Make an effort to eat five small servings of protein every single day. I'm not talking about a steak or anything like that. Plain chicken or fish are... [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone with Celiac?
rachelravenrachelraven
Jan Dollar Gluten intolerance and celiac disease have been found to be much more common than they thought. Plus, they used to think you had full blown celiac or nothing, but it seems that there are degrees of gluten intolerance, just like with lactose. They've also found that intestinal surgery can be a triggering event. You could have had a mild case before, and it worsened over the years. If you have celiac, it could even be the cause of B12 malabsorption. I don't think that the blood tests are... [ more ]
kk GI said inflammation called cuff b/c of location. like in other area pouchitis/in colon ulcerative colitis. would have to ask him why he tested for celiac/why he called inflammation what he did. [ more ]
kk b/c in same dr. visit (GI)for the same issue. celiac/cuffitis along w/other things were discussed. doctor brought up these things/he would have to be asked WHY!!!! That's how! when saw celiac post know doc/ordered test according to what I was experiencing. asking person that started post in to see if issues were same. I was just told negative for celiac/ not one positive/2 negative/whatever. [ more ]
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J-Pouch ForumsGeneral Discussion
recovery process/time for muscle flap repair
GinLynGinLyn
dawn58 I wasn't really restricted to bed rest at all. As soon I was able to walk around I did. Didn't take any stool softeners either. Find out from your doctor if he has had success with this surgery and how many. I've yet to find any. [ more ]
GinLyn Thanks; I'm still not sure I'm going to go for it. I'm getting a second opinion from another specialist on April 15th and am waiting to see what he has to see before I make up my mind. Were you kept on strict bedrest for a few days? I've been trying to get information on the specifics of the recovery, but there isn't much out there. One fairly detailed article I found talked about strict bedrest for 5 days to allow the re-attached blood vessels time to heal properly, then slow movement with... [ more ]
dawn58 I had a rectus abdominal muscle flap. I was fine after a couple of weeks. The problem I had was 5 weeks later I developed an infection and the repair was destroyed. Make sure if you develop any fever to get it checked out. [ more ]
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J-Pouch ForumsGeneral Discussion
4 days out from takedown
K kdmos75
Pluot When you go to the bathroom to try to release gas, move around in different positions. Standing up, touching my toes, then sitting back down on the toilet is a guarantee for me to help pass gas, but it's different for everyone. You can try leaning forward, leaning back, twisting to either side, etc as well. [ more ]
kdmos75 Thank you for all the advice! I am currently 8 days out from my takedown. I am using the bathroom 20 times per day (which is better than 30) but I'm having a problem at night. When I lay down it seems that there is an inevitable gas bubble that constantly moves up and down into the jpouch. I will go to the bathroom to get rid of it but in walking to the toilet the gas seems to no longer be there until I again lay down. I finally slept in an upright position in the rocking chair last night... [ more ]
Mhg26 Fear not! The butt burn should subside within a few weeks as your body gets used to your new digestive system. It's definitely not uncommon to have crazy urgency and spastic feelings early on too. 30 BMs a day is rather high though. Definitely try to eat soft mushy foods that arent stringy. I had my take down in May 2012 and there are still things that I will not eat. For instance a food like celery. I don't think any poucher in their right mind would consciously want to ingest celery as a... [ more ]
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J-Pouch ForumsGeneral Discussion
Absess, fistula, seton
C CaryO
Jan Dollar What you are referring to is an anal stricture, which is a common complication. If you do a search for anal stricture, you'll find a LOT of posts talking about it. It is treated with dilation procedures. Not too complicated most of the time. It may well have been the cause of your fistula. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
SUBWAY SANDWICH QUESTION
PouchomarxPouchomarx
Pouchomarx i had one of those chicken sandwiches with the Fritos on it, with tomatoes and jalepeno.. so good. i chewed very well. hope its not an issue [ more ]
jpouchmike I eat tuna, but I try to make sure there are no veggies in it (onions and celery) [ more ]
PoucherInTO I eat tuna sandwiches with my ileo and love them - my output gets a little stinky but I don't care much about that! Dig in and enjoy! [ more ]
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J-Pouch ForumsGeneral Discussion
Wound Appearance
A AndeeLWesterz
Jan Dollar Yellow, gooey pus is not supposed to be in a healing wound. You should expect drainage, but more on the clear, pink/straw colored type stuff. Call your surgeon's office and someone on his staff can advise you. If there is also any swelling or redness around the wound, or any fever, be sure to report that too. Jan [ more ]
lholdem Mine was also open "dirty" style. It had a little bit of oozy stuff but not a whole lot. I rinsed it twice a day with saline when I re-packed it. My surgeon said to avoid getting soap in it while showering since it could irritate the wound, so I would let plain water run down my abdomen for a while after I was finished since inevitably you can't keep ALL the shampoo and soap coming from above out of a wound near your waist. Does the skin around the wound look red and inflamed? That might be... [ more ]
Mysticobra Short and simple. I had open wounds also but was attached to a wound pump that sucked all the liquid out. worked like a charm. Showering with an open wound....ouch...and ouch again. I had to keep mine totally covered. I am surprised they let you do that. Richard. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch function
M MarkGregory
Jan Dollar Indy, yes, what you describe sounds like adhesion related partial obstructions. What would a doctor do? Most likely nothing, unless this becomes a chronic issue, or so acute as to require hospitalization. If it is a severe, acute obstruction, they do plain x-rays to see how bad it is, and you either wait and see with IV hydration and bowel rest, or they insert an NG tube to decompress, or surgery in extreme cases. If it is a chronic thing that causes you frequent pain and disability, then... [ more ]
Mhg26 Indy I've dealt with the exact same type of blockages in the first year after my take down. I too would feel a sort of mass about a few inches up and to the left of my belly button. I remember after many CT scans that the docs told me it was one particular area that was causing the problems. It's definitely a pain to deal with since we never really know when it might happen. I think the most frustrating thing for me is when I eat a food and function okay from it and then have a mild blockage... [ more ]
Indy_Dave think that is what is happening to me - 5 years no problem. lately when I eat it seems to be blocking about four inches above the belly button and a little to the left...makes a decent bulge in that area and then passes after a couple of hours but is a little painful...could that be adhesions? what would a doc do to find out what it is? hopefully it resoles itself... thanks [ more ]
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J-Pouch ForumsGeneral Discussion
Just had takedown
ccanepa456ccanepa456
TinCan A bidet will help tremendously with the butt burn. I rarely have that problem anymore but can't imagine life without my coco. Still use it everyday. [ more ]
GinLyn It WILL get better! Wipes & sitzes are a must. The cream will help. Keep the area as clean as possible, watch for any rawness. Sitz baths are awesome just for general comfort. Are you eating anything like rice or bananas? They can help slow things down as well. Hang in there, Gin [ more ]
mgmt10 Not what you want to hear but this is all normal and part of the healing process. You need to be patient as hard as it is. Things will improve over the coming weeks. A sitz bath will make your sore bottom feel better. What is your diet like? I think you can up your Imodium but always check with your surgeon first. [ more ]
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J-Pouch ForumsGeneral Discussion
Weight Lifting?
G Goody21
Pluot My intention was to focus on regaining strength in my core so that I wouldn't need a hernia belt in the future. If you have a congenital or permanent weakness in your abs (e.g. due to a permanent colostomy) OR you have a need to lift heavy loads sooner (e.g. caretaker for a child), the hernia belt makes sense to me. Even with the belt I wouldn't change the pace I took. [ more ]
Goody21 Your not cheap your risky! Lol. Maybe we have different guidelines then. Hernia belt might allow me to work a little quicker than you did. [ more ]
Pluot No, I never did. Can't really say why except that I'm cheap and didn't feel like seeking one out. [ more ]
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J-Pouch ForumsGeneral Discussion
did i make a mistake in getting a J-Pouch?
fqfq
Jamesforpm 18 months on, are things better? [ more ]
Bethie fq thanks for posting - my daughter is due to get the takedown next wednesday and she seems to be ignoring the getting used to it part - I appreciate your comments and those that posted back to you because it gives me more information when she starts (and hey maybe it will be an amazingly quick recovery) freaking out - I can lead her to this thread so she can see. [ more ]
Lizzie Knott It does take up to a year for some of us. It can be frustrating. it is not permanent. [ more ]
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J-Pouch ForumsGeneral Discussion
hot foods with ileostomy ?
PouchomarxPouchomarx
GinLyn I have a bit more output, but nothing horrible. I LOVE spicy food. I just try to be careful, lots of liquid, balance with banana or rice, etc. Gin [ more ]
Jaypea I think everyone is different. When I ate spicy food with my ileostomy I had increased output. I did not notice a change in smell but I was definitely emptying much more often. [ more ]
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J-Pouch ForumsGeneral Discussion
Not news I wanted from surgeon....
PouchomarxPouchomarx
BillV It appears that you have some time with your temporary ileo to make an informed decision on what will work out best for you. When my GI discovered high grade dysplasia in a critical area and said my J pouch had to go, I had time to get a second opinion (at Mayo Clinic), research my options and locate the surgeon. All along, I have had strong aversions regarding the bag and its associated issues. I’ve been thru a divorce and the dating scene and found that it was essential to feel good about... [ more ]
Onwisconsin Does anyone else think our system of health care is entirely messed up if a guy has to balance his health against other expenses. Should this not just be a right? You may be able to go to court or file some motion that reduces child support for the short duration. I don't know if thats possible. I know you want to care for your kids, but if you don't have the means. Additionally, Do you have short term disability insurance? I don't know if there is a social security type of medical hardship... [ more ]
Nomoremeds That's a tough situation. I wouldn't worry too much about the mention of Crohn's at this point. They have to at least bring up the possibility of Crohn's whenever someone has a sinus or severe inflammation in their pouch. Just take this time to get stronger/healthier. They won't be redoing the pouch for at least 3-6 months after ileostomy surgery regardless. Try to save money if possible. Perhaps even try and talk to your creditors to see if you'd be able to work something out. You're in a... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Crazy Itching After Abscess Excised?
D DeathStalker
rachelraven My stinking fistula itches from time to time, too. Not sure but that it's irritated from the drainage. I use some barrier creams and it helps some. I like A&D, Bag Balm, and Critic Aid Clear Moisture barrier from Coloplast. If it gets very bothersome, I do a Sitz bath with Epsom salts, or take a ridiculously hot bath, and soak. The stupid thing is small, and benign looking from the outside, the little yellow seton is small, but, pardon the pun, it's all a real pain in the a$$. Your... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Does ED get worse after takedown?
S shnwilkins
CTBarrister I think I was told the same thing. However like I said I had my takedown at age 29 and had almost 15 solid years after that with no ED whatsoever. But then I got older, and when you get older, it is going to happen. I also started getting gray hairs in my goatee, although not until my late 40s. These are things that happen with age, and they cannot be stopped from happening. [ more ]
shnwilkins From what I was told, if the nerves are going to get damaged it will most likely occur when the jpouch is being constructed. I dont think they even mess around down by those nerves for the takedown surgery. I just thought maybe things may change since the rectum area will now almost constantly be filled or filling and that will somehow interfer or mess with those nerves. [ more ]
CTBarrister I had 15 great sexual years after takedown and before the 1st episode of ED in my life which occurred in 2007 at age 43. So I would say no- so long as the microscopic nerves controlling sexual function are not damaged, in which case there could be a different result. I had always thought that was a bigger risk with step 1 surgery, based on what my surgeon told me, but I am not sure you're "in the clear" of that risk with the takedown surgery. ED happens to many males in some degree once you... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
advice needed
J Jason4
rachelraven Has she had a scope recently? You said tests, but not specifics. Maybe they should get in there and look around? You never know what might have changed "inside." And some tests for C Diff are more sensitive than others. Make sure they did the one with higher sensitivity. [ more ]
GinLyn I don't know and it must be infuriating to have them not seeming to care too much! Do things like bananas help slow her down at all? The old-fashioned BRAT diet might help. Gin [ more ]
Jason4 Yes & the results came back negative. It's very hard to see as my grandmother is getting very discouraged. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
New GI and some new information
rachelravenrachelraven
Pouch4Wf Due to my wife's recent developments, I am super hyper-sensitive to anything that is steroid related. Are you on any steroids? Any use in the last year?? Thinking your fatigue and fevers could be adrenal related... Anyway, if you have any recent steroid use, might be useful to have a morning cortisol test... Dan [ more ]
Roni* That is some really interesting information. Thanks for sharing it. Let us know if the b-12 injections work for you. I used them for awhile but didn't notice any improvement. But maybe I wasn't on them long enough. I moved out of state and never went back on them. Currently using liquid B complex with high potency B-12. Just started so can't say if it's helping. In the past I've had trouble with b complex because they're so over the top in potency, but I found some pretty mild ones except... [ more ]
rachelraven He has me doing 1 B12 shot a week for a month, and then monthly. B12 is apparently on back order, groan, but another pharmacy says they have it, so hopefully I can start tomorrow. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Question
L LisaT
rachelraven I didn't see ANYone but a PCP for nearly 20 years! I was doing that well. Fistula necessitated a return to a colorectal surgeon, and I went back to my original one. Had only seen him once in 2002, for a letter to tell my OB Gyn to give me a C section. I got a referral to a GI guy he works with, and saw him Monday. He was great, they both were, and they came in and saw me together. I'm pretty sure I'll be moving on to most care with this GI guy, and only seeing the surgeon if I have seton... [ more ]
Lesandiego My surgeon. My GI does not treat pouches. [ more ]
CJB My surgeon tells me to come see her whenever I have a problem. She cares about my pouch almost as much as I do! I love her for that. CJ [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
J pouch 2nd surgery of 3 step
T Thompson
shnwilkins I just started by eating saltines because they were easy to get down and the salt made me drink more water. I found that white rice and mashed potatoes were also fairly easy to force down. Hope that helps! [ more ]
Thompson That's great to here! Glad your recovering well from it. The doctors are trying to force me to eat bread but I just can't, is there anything you would reccomend me to eat or regain my appetite ? [ more ]
shnwilkins I just had step 2 of 3 done close to a month ago. It will get better, I had very similar symptoms as you have and I am just starting to feel normal again. I think due to the fact you didnt eat for a long time it takes awhile for your body to get used to the new setup. I too felt nauseous whenever I ate for about 2 weeks after the surgery. Also my output is slowing down. I wouldn't recommend it right now but after about 4 weeks you should start taking Metamucil fiber before every meal to help... [ more ]
See all 11 replies...

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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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