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J-Pouch ForumsGeneral Discussion
Side effects of oral iron tablets
A AliceMay
clz81 I just saw my doc and we talked about my low iron. The oral stuff is so rough on my stomach so I really don't take it as often as I should. He told me not to worry about the oral stuff and just come in for the infusions. [ more ]
Scott F Iron is better absorbed on an empty stomach, but it's better tolerated when taken with food. Try it with food before abandoning it altogether, and try different kinds of iron. Vitron-C is a mixture of iron and Vitamin C, to improve absorption, and works well if you tolerate it. [ more ]
jeane I just did research on this today. Look online. She can try and add iron rich foods and veggies with vitamin C at the same time to increase absorption. I made a list of a bunch of iron rich foods today as I constantly struggle with low iron. Can she tolerate broccoli, kale , spinach, clams, scallops, red meat, turkey, oatmeal as some suggestions. Have her take vitamin C (even oj) with iron rich foods and avoid calcium when eating iron rich foods. [ more ]
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J-Pouch ForumsGeneral Discussion
Histamine Intolerance, Colectomies and J-Pouches...
RJG-RossRJG-Ross
RJG-Ross Ok,good luck with your journey Les Ross [ more ]
Lesandiego Wow! Just read a website and the list of symptoms and I have had a lot of "weird" allergies and problems on that list most of my life. Most noted symptoms for me are: Allergic to the cold (age 6 while living in Chicago... LoL) Allergic to the sun ( age 35 while living in San Diego.... LOL) Vasculitis episode (unexplained) that gave me a rash on my extremities, but not my torso. Migraine headaches that led to a neurological event that left me with 2 lesions in my occipital lobe. Rapid heart... [ more ]
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J-Pouch ForumsPouchitis
rebecca/update/further helpful hints maybe
R Rebe0505
Rebe0505 rachel i think i am seeing that as good as it may get for me as long as i have pouch i will always have to be mindful of eating certain things in a day or days in a row..balance is going to be the key and as we all know it is not easy and thats not from lack of trying..its just not always easy to figure out with all the constraints.. i think i am having to face up to fact i cannot eat almond products(FLOUR etc) without some restraints..or too many fruits in a day or days in a row for... [ more ]
rachelraven I do find that eating smaller meals helps me feel less bloated. I never had to be that way, but 20 years in, it's become something that really impacts me these days. However, I'm being worked up for Celiac disease, so the bloating might be related to that. Could also just be GERD... a lot of folks in my family have hiatal hernias... Don't know. Could be SIBO, too, and if that, I'll likely go back to strict FODMAP. I've never had issues with weight since my surgery. In fact, the older I get,... [ more ]
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J-Pouch ForumsGeneral Discussion
Gummy fiber
AllyKatAllyKat
Jan Dollar I take gummy fiber aupplements to hel stem hunger pangs when I am trying to lose weight. A nice side effect is stoll thickening. I take up to 4 at a time. No problems. Jan [ more ]
mgmt10 I never tried it but you have my curiosity going to know if it works. Let us know if you give it a try. [ more ]
Scott F I don't know about the gummies, but Citrucel or Benefiber might be options. [ more ]
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J-Pouch ForumsPouchitis
still holding my own without antibiotics
R Rebe0505
AllyKat I keep my nuts in the freezer. I probably should keep my almond flour there too. [ more ]
Roni* That figures! It couldn't be that easy...lol Well it was worth a shot. I hope you find what's bugging you. Just thought of something. My daughter belongs to a gym called US Swim and Fitness. She was having trouble losing weight no matter what she did and someone suggested she take this blood test that they do at the gym that would tell her what food allergies she has. Supposedly you can have these allergies and not know it, and it interferes with losing weight. I wonder if a test like that... [ more ]
Rebe0505 hi roni almond flour bought from excellent source..lucy`s kitchen..connected with dcd..very good almond flour..almond flour i will use in a few months time in ref rig rest in freezer..no problem with almond flour source... read new update post [ more ]
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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 ForumsPouchitis
Update and advice- help!
AllyKatAllyKat
rachelraven Yeah, I saw your timeline before, and remarked on the similarities! Back when I had the surgery, I thought I'd never be plagued with issues again. Hah! But we are the trailblazers in this. I hope that our issues can help teach and prevent others from similar paths. Again, I have no regrets, and I'm often still having "good" days. But where 10 years ago I never even thought twice about my bowels,etc., these days, it's not the case. Thanks about the daughter. Worst nightmare ever to pass it on... [ more ]
JJA Wow, that's fascinating about the pathology appearance of our pouches after 20+ years. Unfortunate, but fascinating, and makes total sense why I am now back in the "chronic disease" club... Rachel-looks like we've traveled a similar path with UC as kids and now "old pouches" with csome complications along the way. In 1982, the idea of pouches was in baby steps, so back then I was happy to have been able to hang on with prednisone and relapses/remissions for 9 more years, and I agree, the... [ more ]
rachelraven My new GI doc said that they are seeing a "new" autoimmune disease 20, 30 years post J pouch, where it's like the body is again pulling on its genetic trigger to have IBD, and it's now attacking the pouch. It's one of the scenarios he painted to me as to why I'm feeling like I do, 23 years later. If that's the case, I, too, will be on a "UC" med again. He also said old pouches when biopsied and sent to pathology are reading as "colon" and the pathologist, if not told it's a J pouch, cannot... [ 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 ForumsWomen's Health & Pregnancy
Pregnancy with a j pouch and weak anal sphincter muscles
S sally85
sally85 Thanks JJA, i guess im just trying to hold on to any normality thats left when you end up with an ileostomy or a j pouch, but sense would tell me probably to quit while im ahead and not get pregnant if i ever did end up with a j pouch, especially seeing as my anal sphincter muscles are so incredibly weak, the surgeon said they are the worst hes ever felt [ more ]
JJA I responded on another of your threads. IF you get the j pouch, and get pregnant again, you might consider a C-section to prevent further risk of further damage to already damaaged sphincters. If you get the j pouch and still have a weak sphincter you might also consider pregnancy from a functional perspetive. I had a pouch with a repaired and still weak sphincter and fecal incontinence. I took lots of immodium and codeine to help thicken to help cope with this-could I have taken those... [ 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 ForumsWomen's Health & Pregnancy
tanning
K kk
JJA I got a deal at a local place for a Versa spray tan. It smells that evening until you can shower, but no spells after that. Pretty. Not cheap when not purchased on a "deal" though and still must wear sun block if on keep out of the sun meds as it offers no protection. Lasts at least a week-maybe more. [ more ]
Jubilee1962 Look up the "tarte" self tanner. Read the reviews on QVC and tartecosmetics.com. It's only been out for less than 2 years and it is a hit!! You can also watch utube reviews of it. I bought it last summer..I think it is the best..I now only use Tarte cosmetics..great for your skin!! [ more ]
jodiloveslife I use Arbonne self tanner and love it! [ more ]
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J-Pouch ForumsHelp! Need advice now!
jan/lomitol?imodium/,pepto bizmo
R Rebe0505
JJA I have damaged sphoncters, sop really need to thicken to maintain some sembalance of continence, but I take 2 immodium, 8 metamucil capsules, and 1 30mg codeine about 3 times/day, right before each meal. I would start low and then titrate up until you figure out the dose and pacing that works best for you. [ more ]
TE Marie I've increased mine Loperamide to 4 per day, since I've just quit taking Augmentin antibiotic. I might increase it to 6 after a few days. The antibiotic is prescribed for IPS when things get worse. Loperamide is prescribed for the same reason. I've never taken the 8 per day my Mayo GI's written the prescription for and am thinking I need to do this and maybe it will keep me from needing the Augmentin. I just have to experiment. My diet is pretty constant so will be changing one thing. Thanks... [ more ]
Rebe0505 thank you,thank you for your patience and getting back each time..much appreciated..with you input i will figure it out how i will do my eight pills..but mostly hoping it makes a difference i was missing..will keep everyone updated because i love to share if i think i can help someone else with my experience.. so lucky to have you jan on this site..you are an amazing warehouse of knowledge and information... [ 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 ForumsPouchitis
Cipro length of time to take
M MJFMJF
Scott F If the recovery is only lasting 5 days then the treatment has to be changed. Whether it's a longer course (continuous, if necessary), a different antibiotic, or whatever, the old treatment has proven itself inadequate. [ more ]
pjexpress Both Cipro & Flagyl have only been prescribed to me for one week (7 days)only for my pouchitis. It sounds like 14 days is much more common. Should I mention to Doc and see about getting it for 14 days? I seem to now be able to only go about 5 days after the meds before symptoms come back and I need to start another round. [ more ]
Scott F VSL #3 comes in both over the counter and prescription strength. The prescription strength is called "DS" (double strength). VSL is expensive but *very* concentrated with probiotic bacteria. It's the only one that has clinical research supporting its use to prevent pouchitis. [ 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 ForumsHelp! Need advice now!
Fear of loosing my pouch
L L.DL
chiromancer There is a vent (called easy vent I think) you can install on the bag so you dont have to get out of bed to release the gas. The built in filters do not work very well with an ileo. Also many people just "burb" the bag lying on back just hold the bag up and release the fastener a bit letting the gas but hopfully nothing else out. It is a bit tricky. I had a disconnected J pouch for about 6 months I had goobs of the type of discharge you have Nothing I tried medicine wise helped. It was very... [ more ]
PoucherInTO Hi L.DL OK I sent you a PM so if you look near the top of your screen you should see a tab that says NewPM! If you click on the tab it will take you to an "inbox" of sorts, kind of like when you log in to check your personal email. There, you will find a PM (or email) from me, just click on it and you can read it and then there is a "reply" button for you to click on to write back to me. I hope this helps! [ more ]
L.DL Thank you PoucherInTo, I've never pm anyone don' t know how to go about it. If you would be kind enough, and walk me through the steps! I may have to go and get a third opinion I'm really not up to this, feeling the way I do, but doesn't look like I am left with any another choice. I feel so lost and confused, with everything that has happened , I starting to get trusting issues [ 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 ForumsWomen's Health & Pregnancy
Trying to conceive with JPouch and history of UC - 12months+
T TashB90
ksr My husband and I had problems with conceiving. I have a j-pouch and FAP. We went to a fertility doctor and did everything but IVF. He told me I killed my husbands sperm and that I could never get pregnant on our own. I also was not ovulating. He also told me since clomid did not work I could only get pregnant with fertility drugs. Nothing worked. After we spent $$$ we found out he lied to us. I kept doing research. Went to other doctors. I read about metformin, a diabetic drug, and one... [ more ]
Joza Hi, I have had j-pouch for a year and did one round IVF-ICSI, because my partner has problems and I'm now happily 8 weeks pregnant. Our first child is also a IVF-baby. I can really recommend IVF. I was really scared I could never get pregnant after all those surgeries, but it was a wonderful suprise to get lucky on the first IVF-round! It is really worth all the trouble. Good luck and if you want more info, feel free to contact me. [ more ]
clz81 If you have a chance to read through the posts over the years, you'll read that having trouble conceiving naturally is unfortunately rather common after these surgeries. We were one of the lucky couples that got pregnant right away with no issues. The discomfort you are describing is also pretty common across the boards. Not exactly sure what got moved where during these surgeries, but sounds like it's uncomfortable for many women. On a positive note, it got better for me after my son was... [ 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 ForumsHelp! Need advice now!
Post-op Pain
A AndeeLWesterz
AndeeLWesterz The pain has gone away. The surgeons and I believe that it may have been where my intestines were still a little asleep. Thank you for all of the advice. [ more ]
techwrench Do you have cramps,or just pain ? I've had a j pouch since 1998,and from about 2002 to present,I get an occasional obstruction.Been to the ER many times,and they could offer no explanation.One night by accident,fell asleep on my left side.The obstruction cleared itself.I notice the obstruction feels like it's at the take down site,and I don't have any movement until it clears.You mentioned "few bathroom visits",and obstruction came to mind. [ more ]
ccanepa456 I had my takedown a week ago today and just a couple nights ago when I got home from the hospital, I was having more pain too. I am going a lot more and I called my hospital to ask about the pain and frequency and they just told me all of it sounded normal and to keep an eye on it or call back if it worsens. They also told me to up my dose of Imodium to two 2mg pills a day... [ 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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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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