Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsGeneral Discussion
Can Humira be used for UC in pediatric patients?
M Momma
Momma Happy to say that the nurse came today and he did all 4 injections in his thighs. He said it felt weird but didn't hurt at all. [ more ]
Jan Dollar I don’t think your son would be considered pediatric in this case. UC was the more recently approved disease for treatment by Humira, and drugs are always approved for adult populations first, unless it is a pediatric specific drug. Pediatric populations are added later when more data is available. That said, Humira is approved for those as young as 2 with other diseases, so your son should be fine. The overal safety profile is similar to Remicade, minus the allergy issue, since there is no... [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Biospy
P Peggyp
Scott F This is a little strange. Ulcers tend to be visible at the time of the scoping. It’s possible to have inflammation that can only be seen under the microscope, and dysplasia normally behaves that way, but an ulcer is an open sore. Perhaps they were very tiny ulcers? [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Rectal Rocket Supositorys
MochiMochi
Mochi It looks so intimidating. The name doesn’t really make it seem any less intimidating. I’ll put an update on this when I know if it works. thanks. [ more ]
Scott F It looks like an ingenious design, and if it works for you (i.e. doesn’t cause leakage) then it might do a better job on cuffitis than the conventional approaches. Why not give it a try? [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
MRI results
S sally85
Jan Dollar Yes, scarring can recur that quickly. Three times a week is like every 2-3 days, NOT 6 days! Generally, you dilate frequently after surgical dilation, and gradually increase the interval between self dilation. If it starts to get difficult, then you need to go back to more frequent self dilations. Wait too long and you are back to needing dilation under anesthesia. Even if you are able to evacuate your pouch, you should still try to dilate once a day. Maybe get a smaller dilator from your... [ more ]
TE Marie Hi Sally, I had a dilation of my stricture done in surgery and it came back fast. I had a bidet and had to give myself enemas to empty 4 - 6 times a day. Have you tried anything like that to help empty. I had an enema bag that I used when I HAD to be away from home, like when I went to Mayo's for several days. Long way of saying the stricture can come back fast. The imaging clearly showed my narrow opening. My surgeon and GI at Mayo's said my cuffitis, which is UC, was causing the strictures... [ more ]
sally85 Also I forgot to mention, before I had the dialation done I could not empty at all, I had to strain like crazy! And I had extreme gas that used to hurt like mad and basically I was home bound because I was forever feeling I needed the loo, but couldn't empty, so much so that the extreme gas was coming from my vagina as well as lots of discharge and mucus. Since the dialation however I can go to the toilet ALOT easier and I have had no gas from the vagina, and no discharge at all either, I... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
xeljanz
M Momma
CTB23 ❤️
Bubba1028 I’ve heard of this one- my doc was hoping I could hold out until this year to see if this might help my UC. Unfortunately I wasn’t able to make it that long. My doc said there are some amazing drugs coming out and being approved by the FDA. He said it’s going to change how they treat UC from here on out. If it helps someone not have to go through the stuff we’ve gone through it’s worth it. [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Pouch Removal Recovery Time??
J J.T.
TE Marie I had a problem sitting on hard surfaces for longer than 2 months but took a cushion with me everywhere I thought I'd need it. That is because of the removal of the rectal stump and not the j-pouch. I think they remove the rectal stump with the BCIR but Bill would know about that. If you can push your trip back a month I think it would give you more time to get use to everything. By everything I mean the perm ileo and rectal stump removal. [ more ]
BillV Joe, I can’t give you an answer about chronic pouchitis with the BCIR, but either Susan Kay or Gail with the BCIR program in Florida, (800) 336-0789, could better answer your question. I never had pouchitis with my J pouch, but did have it for several months post op while my BCIR pouch was expanding to its full size. I have not had a recurrence of it in the 3.5 years since. My J pouch had to be removed due to recurrent high grade dysplasia and a malignant polyp in the rectal cuff. Please... [ more ]
J.T. Bill - if I have chronic pouchitis now.....wouldn't I expect to have chronic pouchitis with a BCIR? Can I ask why you had to have your pouch removed? Thanks Joe [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Cuffitis not responding to salofalk and prednisolone supposortries...
Andrea73Andrea73
Scott F I’d suggest a C. Diff test *before* starting antibiotics. I hope you feel better soon, Andrea. [ more ]
Andrea73 At the end of my tether today... Been in the loo every hour since yesterday afternoon and all night.. Seeing my consultant tomorrow if I can hold out that long... Thinking it's maybe escalated to pouchitis as well as cuffitis. Output pure water, no matter what I take! Think I'm prob get antibiotics tomorrow but need bed today! Only went back to work full time yesterday as been part time since surgery! Gutted literally! [ more ]
Andrea73 ❤️
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Just diagnosed with crohn's
LeannernLeannern
Bill A Like others I was told I had Crohns after 5 years of UC diagnosis. I had a infusion 2 weeks ago. It had a effect for a few days then nothing. I have yet to take the second infusion due to a unrelated cold. I am asking if this is a process and its too be expected or should I consider other medications when it does not work. [ more ]
Leannern I will, thank you! [ more ]
jeane Let us know how you make out. Best of luck. The lack of sleep is very tough. Stay strong. It’s a battle for those of us with IBD. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Overload
tftf
Former Member Yeah, even before and since my diagnosis (UC) diet has never been an issue or ever been the cause of a flare up. Before my J pouch, I had an ileostomy and was flare up and medication free throughout, well apart from taking Imodium to slow down my output. In fact, the only food which caused me to dash to the toilet or to feel ill, was Strawberries and Cream, but only during a UC flare up; any other time, never a problem. [ more ]
tf That's great that u can eat anything, good for u. I never could even before J Pouch. Since my dx in 1998 and J pouch 2013. [ more ]
skn69 Happy New Year...time to detox...I admit it...staying home over the holidays with ice cream Christmas logs, endless boxes of chocolate, rich and creamy cakes and savoury treats pretty much killed me this year. I had 1 partial blockage the day after Xmas, am back on Probiotics since the 26th and think that I have put on at least 5lbs (the ones that I was supposed to lose). But, within reason and considering the restrictions that K pouches have on fibres etc, I did pretty well. It is the... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Medical alert bracelet
B Bubba1028
JLH there is an on-going post about this on the k pouch korner, although the wording might differ. there are several sites for the bracelets referenced on the site. [ more ]
CTB23 I do need to get one especially since I am allergic to 3 antibiotics as well as having a j-pouch. I checked on Amazon to get an idea of what I might want to consider. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Higher risk of gallbladder removal complications for j-pouchers?
PouchomarxPouchomarx
Jan Dollar I agree. Your bigger issues are adhesions from prior surgeries. Those with IBD are at higher risk for liver and gallbladder disease, not surgical complications from gallbladder removal. Bottom line, try not to obsess about this. You could live the rest of your life with your gallbladder and that’s a long time to spend worrying about “what ifs.” Read up on symptoms of biliary colic and acute cholecystitis. If and when it hits, you can be prepared to tell your providers that you know you have... [ more ]
Connie It has something to do with changes in how the bile salts are absorbed. Following an attack that sent us to the ER 3 years post-surgery, my son had his GB out at age 12. As his GI pointed out, of course it is related, b/c most 12-yr-olds don’t need cholecystectomy. The surgeon started at 8 a.m., tried and couldn’t get in with the laparoscope. She came out at noon and told me “everything was stuck to everything” (due to scarring and adhesions from his massive leak and prior surgeries). [ more ]
Pouchomarx I didn't hear back from Shen on what he meant but I did hear back from Vicki who is Dr Dietz's nurse who used to be Dr Remzi's nurse and she stated that only thing she can say is the ultrasound report just stated there were stones but no inflammation. Stated as far as complications all she could say was maybe more diarreah. Which concerns me cuz already have that 80% of the time with some leakage occasionally that it very minimal and don't want that to get worse obviously.. I am still... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
J-pouch diverted to heal abscess, options?
L LaurenT84
jeane Best of luck. Good news. Gather your strength in case you need further surgery. [ more ]
LaurenT84 Hi Jean, Ive met the lead surgeon and he was really nice. He didn’t want to do anything immediately given I’m only 4 weeks post op. He wants to see me in 3 months for an MRI and 4 months for an EUA to see if the area has healed. This will then indicate if I should have more surgery (flap or advancement) or not as it could heal on it’s own. Quite relieved that he wants to wait, as it’s still early days in healing post drain and clean out. If more surgery is needed post MRI and EUA, I’ll be... [ more ]
jeane Good luck Lauren. Please post as to what you decide. I hope you are feeling better. Teaching hospitals are a great way to go if your surgeon operates out of one. I’m dreadung the temporary ostomy but I’ve also had a lot of pain for a long time. No abscesses, but the stricture narrows and the fissures get infected, both which are very debilitating. [ more ]
See all 5 replies...
J-Pouch ForumsPouchitis
Pouchitis
A akteacher
Scott F I’m sorry! What’s especially unfortunate is that the pouchoscopy will show what your untreated pouch looks like, but it may have been more useful to see how well the Tindamax was working on the pouch. It can be helpful to reasses the untreated status (e.g. if you’d like to try to get off antibiotics), but it’s just cruel to do it without your consent and cooperation. I can think of a few possibilities for you, some of which might help: 1) If you have any doctor at all, or even can tell a... [ more ]
See 1 reply...
J-Pouch ForumsWomen's Health & Pregnancy
pain during intercourse
B Bubba1028
skn69 Bubba, First off, it is way too soon to judge what things are going to feel like a few months down the road...you are still swollen, inflamed and way too close to surgery to consider this permanent. Next, things take time. It means that you have been somewhat rerouted in there and it takes time for things to settle down, find their space. That means that you are going to have all sorts of different sensation but none are forcibly permanent. Some, maybe...but not all. Finally, there are lots... [ more ]
Bubba1028 Thanks. I called and made an appt. hopefully this is something that will be fixable or go away. [ more ]
Jan Dollar I definitely would call your GYN doc. Most of the pain women might feel has to do with general tenderness in the area, not vaginal tightness. Plenty of time has passed for the surgical swelling in the area to have resolved. I don’t know what is going on in your case, but it does not seem normal. I resumed relations less than a month post op, and I had a 1-step procedure. I was far from a newlywed though, and post childbearing too. Jan [ more ]
See all 3 replies...
J-Pouch ForumsK-Pouch Korner
K-Pouch Mucosal Prolapse
MJ0917MJ0917
skn69 Ok, I can tacle all of this: 1. it may be 'fixed' but the tissue of the valve/stoma may have stretched out due to the bend or curve that you previously had and that may cause a turtle-neck effect meaning that you have an extra-long valve now and some of it just sticks out...no leakage or air or stuff other than post-intubation (a couple of drops is normal) then you are fine... 2. Stinging or burning may just be temporary...post op trauma to the zone...you don't say where it stings or burns. [ more ]
JLH that was the fix i thought i was going in for....... i await a call from nurse and/or doc. another problem is that it stings and hurts. nurse suggested lidocaine, which helps for about 3 minutes. pain isn't symptomatic of a problem, so ignore it. and another problem, as long as i'm at this, is my mucus output has more than doubled. previously it was bad, but now i go through 2-3 nursing pads/day. btw, nursing pads are wonderfully absorbent and convenient, albeit a bit bulky. janet [ more ]
skn69 No, not all over again...When (and I am not saying that that is the problem) I had a peristomal hernia, the 1st time, they tried to literally cut from under the stoma via the skin and do an outside fix...it didn't work. Then Dr C went in and had to move to the whole pouch and stoma...that didn't fix it either. Finally, I had my French miracle surgeon come up with something original. Imagine a circle of mesh. He then cut it like a doughnut, a hole in the middle, and a slice taken out of one... [ more ]
See all 29 replies...
J-Pouch ForumsGeneral Discussion
j pouch diet, night garments?
SP steven phelps
JuliaP I just sleep in a diaper. It’s almost NEVER necessary, but that way I don’t worry. My husband, the most wonderful man in the world, still thinks I’m sexy. The rare “accident” doesn’t seem to have anything to do with what I’ve eaten that day—they’re just random. [ more ]
JJA If you are having trouble emptying, strongly consider a bidet with a turbo or "enema" function. That makes my quality of life 5x better. I miss my bidet more than my family when I travel! The bidet significantly reduces my # of Bms and allows me to "start on empty" at times when I am at higher risk for incontinence. i also use Always Infinity shifted toward the back, when extra protection is needed, and I tuck a portion of a cotton ball right up inside my anus-that has also been a life... [ more ]
aka KNKLHEAD I know the female products are pretty effective, just put them more on the back side. I now use men's depends, shift them to the underside and back and they work pretty well. The fact it's for men makes it better! [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Recurring Pouchitis
SA Swag Anderson
JuliaP I had pouchitis almost constantly for the first two years after I got my J-pouch. I was always on Cipro or Augumentin. Then gradually the bouts got further and further apart, and now I haven’t had one over a year, nearly two years. I didn’t make any changes to my diet—no probiotics or anything like that—I just eat everything I want, even lots of salads. I also didn’t change my lifestyle. So there’s hope thing will just clear as time passes. I hope this will be your experience. [ more ]
Scott F That’s pretty much how antibiotic-dependent pouchitis gets diagnosed for any of us. Sometimes a longer course and/or a higher dose and/or multiple antibiotics make it stay away, but if not then you may have to keep treating it in order to feel well. I managed to avoid antibiotics for a year or two with plenty of VSL #3, but eventually I had to stay on antibiotic therapy. [ more ]
See all 2 replies...
J-Pouch ForumsWomen's Health & Pregnancy
How long should I wait?
KalynKalyn
Bubba1028 I waited two months after my first surgery and a month and a half after my second. Not sure I have advice for you since it was painful for me. I think i needed more time fooling around to get in the mood. Heading to the GYNO next week to see if everything is ok. Go with what feels right for you. If it hurts, stop and try other things. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Nabumetone (NSAID) for my back...should I be worried?
samwoldsamwold
samwold Thanks, Jan. I was on the Nabumetone for one week and I was experiencing the gut symptoms, bloating and increased number of bowel movements, so I felt like I was on my way to pouchitis. I will inquire about the Mobic. Thanks again! [ more ]
Jan Dollar Prednisone could help, but I would not mess with anything other than a fast taper. For me, it is 40mg/day x 3 days, 30mg/day x 3 days, 20mg/day x 3 days, 10mg/day x 3 days, then stop. That usually helps get me past a severe inflammatory arthritis flare. But, not always. Right now I am taking a couple of weeks of nabumetone (Relafen) for neck pain with radiculopathy (due to spinal stenosis) after the prednisone taper was not very effective. My rheumy refuses to order Celebrex for me due to... [ more ]
samwold The back doctor told me to stop the Nabumetone since it was disturbing my stomach and causing a large increase in bowel movements but then suggested Celebrex because it is easier on the stomach. The only problem is that I cannot take Sulfa drugs since I have had a bad experience in the past with my UC. It is hard to trust this doctor since he seemed to completely overlook my past history. They are now saying I can consider injections after the physical therapy. It is all getting frustrating... [ more ]
See all 13 replies...
J-Pouch ForumsHelp! Need advice now!
Avoiding stress
M MCH
Kalyn I know exactly what you mean! I, too, get stomach pain when I am upset ever since takedown surgery. I feel like this answer is almost too simple, but it's really been the only thing that helped me manage stress. Meditation. And I say that as a bit of a skeptic. But honestly, the difference in my stress levels between when I am meditating regularly and when I'm not is huge. And it helps facilitate/augment things like focusing only on what's in front of me etc. I just feel like I deal with... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Gall stones now....
PouchomarxPouchomarx
skn69 I have heard of the meds but was never given any...I had a GP who was also a naturopath...She put me on a special diet...I had to drink a 'homemade lemonade' morning and night ( freshly squeezed lemon, a sweetener of your choice if you need it, hot water (in the morning before breakfast) and if you like some mint leaves for flavour), It was also very pouch friendly and I have kept it up ever since. I took activated charcoal morning and night (tablets), ate a lot of artichokes, asparagus (and... [ more ]
Pouchomarx like what? THERE are 2 meds that they say can dissolve stones over years but Shen stated they are both ineffective. and I eat fatty food, but like I said what I eat doesn't cause the pain to be any worse. [ more ]
skn69 Again, if it is not inflamed, if it isn't infected, if it isn't painful or causing problems you may not need to take it out...for now or for quite a while...There are alternative treatments to reduce them or clear out the gallbladder but they are disputable...some say they help (the treatment helped me not to need the surgery for over 15 yrs) but in the end, I was not as careful as I should have been with fats and ended up having it out....others say that the treatments do not help...but... [ more ]
See all 26 replies...
J-Pouch ForumsGeneral Discussion
POUCH TOO SMALL
bederyparisbederyparis
rebel I might be wrong, but the size of your pouch might also depend on other factors; as we are all built differently. https://en.wikipedia.org/wiki/Small_intestine [ more ]
TE Marie My j-pouch got larger as I think is common. I am wondering if that will happen in your case. The manometry is a good test. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Rash redness and general fire!
R Recovr83
JB788 Ilex paste has been a god send for me. Calms the itching and puts a barrier on sore burning skin...I can’t live without this [ more ]
Bubba1028 I use a barrier cream from coloplast- specifically made for adults who have incontinece to prevent rash. I put it on every time I go to the bathroom. Thats key. Good luck! [ more ]
Recovr83 Thanks all for your reply’s I see the calmoseptine seems to be the best one but I can’t get it in Europe so I got canesten instead, the bidet seems like a great idea too an easy to install gonna order off amazon, Hopefully these couple of changes will get me on the road to normality quicker 😁 [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
1 month past take down - possible pouchitis?
N Nicolajs
Scott F Part of the adjustment is figuring out which sensations need to be attended to, and which can be ignored. Maybe that pressure can be ignored, at least for a while. Ignoring the pressure a bit is sometimes called “stretching the pouch.” When you go to the bathroom and not much comes out it’s important to distinguish between a nearly empty pouch that feels full, vs. a full pouch that can’t be emptied. If you end up seeing your doctor about this you’ll get better care if you can successfully... [ more ]
Nicolajs Thanks for the inputs bubba and j moons. It’s definantly gas sometimes, especially at night. When i go at night though, I don’t think that the amount of gas comming out is vert much. Maybe thats just because the pouch can’t hold that much gas? Also I have not done too much exercise, like walking and so on. (Was told not to run and such for at least two months). The reason i’m not walking so much is I feel pressure when standing up, and the only way to get rid of that is to go to the... [ more ]
Bubba1028 I agree about the wipes and taking the medication with you. I have a little purse thing I bring to the bathroom during work. I also have a small tube of cream that i keep in that bag for travel too. When I was in the hospital last time my butt got really sore and they gave me a Ruben of Coloplast barrier cream/ointment and it’s the best. I just ordered a bigger container of it. I also use really soft toilet paper at home bc I have a bidet I purchased for $30 on Amazon. It sounds made a word... [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Pouch Not Completely Emptying
J JordySimo
AKT2 I have that problem when I eat too many carbs..bread, potatoes, rice, pasta etc. my stools become thick, sticky and difficult to pass completely. [ more ]
CTB23 Drinking water definitely works well for me. I also add in a container of coconut water because it has a lot of potassium. I make sure I drink about 60 ounces of fluids a day. That can also include soups. [ more ]
JordySimo I’m always drinking tea so that may not be enough... I’ll try drinking pints of water throughout the day and see how I manage! Thanks! [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
PSC/UC
M MissCariss
Winterberry Hello, Autumn. I was in hospital eight days for the first surgery, and five days for the takedown surgery. When you wake up your throat will be sore and dry. The nurses will give you ice chips but not water yet. Remember to breathe and oxygenate your blood. If you have an epidural in addition to the IV morphine pump you won't feel any pain, but be prepared that when they remove the pain management around the third day, you will feel some pain in your middle and at the incision. Your stomach... [ more ]
Autumn Winterberry: What should one expect for the first surgery? What was your surgery/hospital experience? Autumn [ more ]
Winterberry Hello, Misscarriss. I went to my two step surgery without UC symptoms, and was healthy and strong. I was diagnosed with UC more than 30 years ago. Other than three or four flares per year, I was okay. I was not on any medication for UC, not even during the flares. So I went into surgery completely healthy and very strong. Except for stage 1 rectal cancer, which was very small and discovered early. I showed no symptoms of cancer at all. The cancer was removed along with the colon and rectum. [ more ]
See all 6 replies...
J-Pouch ForumsMen's Health
Gaining Weight
BlokeBloke
Daleer It's so strange. I can eat almost nothing and gain a ton of weight. I wish I could eat the amount you guys do but I'd blow up to 300+ in no time. I actually think I absorb calories far better than I did when I had my diseased colon. [ more ]
Clyde My weight came back all on its own [ more ]
Anilet I'm also hitting gym regularly ..Which type of supplements you are taking..can u name it pls [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
Surgery vs. QOL
T Taylor
Daleer I kept my colon for as long as I could until having it out was no longer a choice but a necessity. Surgery is something you can do at any time so I would keep your colon as long as you can and as long as you are able to achieve remission and a decent quality of life with anything other than prednisone. If I got to the point where I had to stay on prednisone all the time - then I'd have the surgery to avoid the permanent damage to my entire body that prednisone would start to do. [ more ]
Former Member As Scott says; 4 to 6 bathroom visits per day would be typical of a successful J pouch. With a J pouch, such an exent of bathroom visits can't be compared to what we endured during a UC flare up; from my own experience, there's no comparisons whatsoever. Within 6 months of complete recovery from my final surgery, surgery which removed the temporary loop ileostomy, colostomy bag and reconnected my bowel, I stopped worrying about toilet visits. Yeah, on paper, 4 to 6 or maybe as many as 8 per... [ more ]
Scott F If the Remicade were working brilliantly then putting off the surgery could be a great choice. It sounds like it’s not working very well, though, so a J-pouch is likely to feel better, though getting there is a journey. Do be aware that 4-6 bathroom visits would be typical for a well-functioning J-pouch. I suggest you choose your surgeon carefully. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
For the women... still no menstrual cycle!?
lovedby2lovedby2
Bubba1028 I wanted to bring this topic back up. I’m two months post op,-‘d had one normal period, but missed this past month. I’m on the pill and unsuccessfully tried to be intimate once- no possibility I could be pregnant. Would the surgery make my period sporadic, even if I had it just find after my first surgery and the month after my second? [ more ]
Holly M It is normal for sure. It took about 4 months after take down for my next menstrual cycle to start back up. [ more ]
TE Marie Hi, you might want to post and/or read some posts in the women's forum as well. [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Pouch diversion, now lots of abscess/fistula drainage
n/an/a
n/a Thanks TE Marie. I've been reading up on this issue, and one of the suggestions was to try to empty the pouch of its mucous on a daily basis. Since my abscess/fistula communications with the pouch, the theory is there wouldn't be much left for the abscess to drain. I tried it a couple times, and it seems to help - no more big "accidents" from the abscess or elsewhere. Hope it holds true for long term, we will see. [ more ]
TE Marie There it is again, medical professionals saying something is "normal" when it seems far from it. As Jan said any change that is beyond "normal" might indicate another problem. I hope your j-pouch clears up soon. [ more ]
n/a Thanks Jan. No fevers or other abscess symptoms like I had with my previous abscesses. My jpouch puts out similar output from time-to-time, which I was told would be normal at this point. If the draininage comes from the seton hole that was made in November, could there be another abscess inside that same area? Not sure I understand all this (as usual ) I will be in contact with my surgeon or her PA. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Ulcerative Colitis (J-pouch) and Degenerative Disc Disease...anybody else?
samwoldsamwold
Jan Dollar I agree with Scott, with one caveat. I was diagnosed with enteropathic arthritis about a decade after my colectomy for UC, although I had symptoms since 20 years before my colectomy. It just was not significant to make the connection. Anyway, my diagnosis was made basically due to chronic low back/upper buttock pain. I also have some degenerative disc disease and spinal stenosis. My rheumatologist said that enteropathic arthritis can accelerate the degeneration. You mainly need to see a... [ more ]
Scott F Degenerative disc disease is very, very common. I don’t think there’s any connection to IBD or J-pouch surgery at all. I had back surgery a couple of years ago that helped enormously, but mine had becom very severe, affecting strength in my leg. The surgery wasn’t very bad, but many people with back pain are better off without it. I hope you find some relief! [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Stricture dialation and fistulas
S sally85
Scott F The purpose of a draining seton is to keep the channel open and draining. As big a nuisance as that is, it’s worse if it closes off and develops into an abscess. That may not happen to you, and if you run into trouble another seton could be put in. Good luck. [ more ]
sally85 Thanks so much for responding, sorry I've been delayed, I had my dialation and biopsies taken, when I came out of theatre he said he had put a seton in, and said if I didn't like it I could cut it and remove it, well I tried for about 3 days and it felt so uncomfortable really bad, especillay when I had to use the dialator the seton was pulling and it was just to much. My question is will anything very bad happen by removing that seton? The surgeon did say himself I could remove it, the... [ more ]
Scott F We have heard from plenty of folks who do well with dilations. Some have to keep dilating periodically, and some reach a stable point and are able to stop. Just stick with it and hope for the best. Your fistulas make this a bigger challenge, of course, but the highest priority is to be able to poop. [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Allergic reaction to Remicade
M Momma
Jan Dollar Maybe, maybe not. They can test for anti-Remicade antibodies, so you don’t have to wonder. Antibodies generally make Remicade less effective, but can also cause a reaction. The infusion reaction could could be just allergic. It is more common when you’ve been on Remicade, stopped it, then resumed later. I presume he was premedicated? I always get Tylenol, an antihistamine and IV SoluCortef. Jan [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Pain then vomiting - blockage?
J JAYMEE
Jan Dollar Usually, a specific food is not the cause of an obstruction. It is more about your intestine moving in a “wrong” way, so that there is a kink or similar. This is caused by adhesions that formed within a few weeks of your surgery. So try not to beat yourself up about what you did or did not eat. Unless you are swallowing without chewing, you are doing fine. The only thing you can do is to be sure to drink plenty of fluids, stay active, and chew your food. Jan [ more ]
JAYMEE Quick update - no sleep last night as was in constant pain, but no vomiting and the pain has subsided a bit now. If it carries on tomorrow I think I'll ask my consultant for some advice. Thankfully I work from home and have an understanding employer. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Nausea after Remicade anyone?
M Momma
Jan Dollar My vote is for the Flagyl. It is rather notorious in regard to GI symptoms. Those that react to it tend to have serious issues. Cipro is generally better tolerated. Jan [ more ]
CTBarrister I never had nausea in two years of Remicade. Other medications like Methotrexate and Benadryl get taken with Remicade and could be the cause, but Cipro and Flagyl could cause it if he just started taking them. You should review the entire medications list with his doctor and seek advice. It may have been the Flagyl and maybe not. Glad to hear it seems to be getting better. [ more ]
Momma He’s feeling a bit better. Still intermittently nauseous but hasn’t vomited. I’m hoping it’s the flagyl [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
another 5 stars for Dr. Shen
CatinthehatCatinthehat
Jan Dollar Well, hopefully enough time has passed for signifigant scarring to develop so that the abdominal wall will have enough strength to hold together without the mesh. For me, the incisional hernia was not much of a surprise after prolonged illness with UC and nutritional deficits. Plus I was on high dose steroids at the time of colectomy. My mesh repair was 21 years ago. So far, so good. Jan [ more ]
Catinthehat The mesh has not been a problem for 7 years, at least that I was aware of, until the fistula appeared quite rapidly, about 6 weeks ago. Dr. Shen thinks that it is due to the infected mesh and the pouch abscess is a separate issue. (Correct, Dr Shen does not seem to like mesh.) I have also been on Azathioprine and before that prednisone for other auto-immune problems. These drugs may have lowered my resistance to problems with the mesh. When I have the mesh removed, I don't know what prevents... [ more ]
Pouchomarx so are you/they thinking that the mesh caused the infection which led to the fistula? how soon after the mesh repair did you notice issues? or do you think this was all caused from the infected abcess? .. I know Dr Shen was not happy that I got a mesh repair for my hernia but I also knew the success rate without mesh is very low and I wanted to minimize my chances of further surgeries [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
fistulas
kangaroo womankangaroo woman
kangaroo woman Thank you, catinthehat. Yes, my next stop will be a gynecologist to see if she could spot something. I'm looking into natural anti-inflammatories to try and get the inflammation under control since it's the pouchitis that caused the fistulas. I may need to take a trip to the Mayo Clinic (where my first surgeon is) to get a thorough work up. I adore my NY surgeon, but I adore the facilities at the Mayo. They provided me with care that could not be compared to the tri-state area. Thank God... [ more ]
Catinthehat My understanding is that fistulas do not usually heal on their own. I have one that has formed at my navel and am currently waiting for surgery to be scheduled at Cleveland Clinic. A CT scan helped to locate it. I certainly understand your concern and waiting until the end of January for an appointment is not helpful. Do you have a gynecologist or gastroenterologist that you could see? [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Diarrhea
B Bubba1028
Bubba1028 Thanks for the reply. I actually picked up some Metamucil tonight on the way home and I’m starting with one glass tonight. Thanks for the explanation about the soluable fiber vs. insolvable fiber. The doc also prescribed my something called Questran, which may slow down the pipes. I’ve also got a sore bum right now from going- tried to rough it at work today without taking my wipes and cream to the restroom. Lesson learned! [ more ]
Scott F Bubba, it’s still pretty early in the process for you, so sometimes the strange sensations may just require getting used to your new parts. Straining isn’t very good for your pouch (or the rest of you), so if you’re able to reduce that I’d recommend it - perhaps deep breathing or mental relaxation, which were sometimes helpful for me. There’s a big difference between soluble fiber (e.g. psyllium/Metamucil) and insoluble fiber (e.g. vegetables). Soluble fiber helps many of us, including me,... [ more ]
Bubba1028 I got tested for c diff when I was in the hospital, so I don't think it's that. I've had c diff before and it doesn't feel the same and it's missing that horrible smell. I woke up feeling fantastic today actually. I did call my doc and they added Questran and suggested to eat a lot more fiber - way more than I normally would. I always thought fiber would make you to the bathroom more. I'm used to avoiding it - back from when I had UC. It'll be weird to make that switch. How can they tell if... [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
manual dilation/stretching
N new_J
Scott F That’s great, Dan. If it’s being treated as pouchitis then normally a 10-14 day course would be completed. It’s much more likely to come back if inadequately treated. [ more ]
new_J So .much for the benefits of electronic communication with Medical Providers. My surgeon called me back this morning. I think the problem is he's just not a computer person, hence the short answers and in this case no answer. He was very accommodating and understanding and agreed that we should stop the manual stretching. I'm relieved because I've always liked this guy and I believe he is at the top of his game in case I ever need him again. With the help of Flagyl and Cipro combined I'm... [ more ]
Scott F A stricture is simply a narrowing around the circumference of the affected area, almost like a rubber band were wrapped around it. It can be caused by thickened, fibrous scar tissue or other things. If it isn’t causing your symptoms, though, a more thoughtful conversation about treatment is critical. It’s hard to tell if it’s been dilated enough, for example, if your condition doesn’t change after treatment, and you certainly deserve a different explanation for why treatment might be... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Nausea with diverted pouch and possible crohns
SaffSaff
TE Marie Have a wonderful trip! [ more ]
Saff OK thanks Scott and TE Marie, good to know some options. I managed to get in to see gastro at last minute before I go. Also had a bowel obstruction lastnight.. maybe I had partial obstruction that was causing nausea.. anyhow will see Gastro this morning. [ more ]
TE Marie Have you been checked out for GERD? The medications Scott is mentioning above should treat it is that is your problem. [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
How long should it take to pass the camera pill with a jpouch?
M Momma
Momma Just an update we had an xray today and found no pillcam so it must have passed without him knowing. [ more ]
RinaJP Mine got stuck in the pouch and had to really push to get it out through the anal canal. It kind of hurt because my anal canal is very narrow, but it was a relief once I got it out. Hope your son’s camera pill will come out easier. If he’s having output, he should be fine. [ more ]
Momma Thanks jan. None of the drs are concerned that the pill didn’t pass yet over 24 hrs. They offered to do an xray to see where it is but that would delay us going home from hospital today. They said as you have that long as he has no pain and passing stool not to worry. Going for follow up visit January 2 if we don’t see it pass we will have xray then. Still makes me nervous but I tend to over worry about everything [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Pouch Diversion ... done - on my way to full removal.
n/an/a
Saff HI again N/A, yes i will keep in touch, with Lori also - sounds like were all at a similar stage. I had a bowel obstruction lastnight - eek ! awful things. [ more ]
TE Marie Glad you are doing better N/A. I too was diverted to an end ileo aroun 6 months before I had my j-pouch and rectal stump removed. That surgery has to be done open so expect a midline scar. Mine was larger than it was when they removed my colon but the recovery was better than from the colonectomy. It probably had something to do with already being use to an ileo. Have you looked into NUUN hydration instead of drip drop. It is much more reasonably priced. It is on Amazon or you can order it... [ more ]
n/a At my 2nd 10-day stay at Cleveland hospital, I was unable to eat anything without throwing up. Even after countless tests, they couldn't decide whether I had a stricture/adhesions or my bowels just were pissed off and went on strike for awhile. I was put on TPN via a central venous catheter, and am on it 'til this day (at home), but am weaning off and hope to be off in a week or 2. On the bright side, I am feeling better, eating almost normally, gaining weight, my output has thickened, a lot... [ more ]
See all 15 replies...
J-Pouch ForumsHelp! Need advice now!
Why can't I lose the weight
EdithEdith
CTB23 Just curious, I am finding it difficult to gain back the weight I lost since my takedown 14 mos. ago. Did you notice weight gain after a certain point? My surgeon says it takes about 2 years to gain it back. I have been at a standstill. I am also female, aged 63 and about 10 lbs. underweight. [ more ]
Edith ❤️
See 1 reply...

Join Us!

Founder, Creative Director & Web Master

William J. Johnson
bjohnson@j-pouch.org

Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

Forum moderator and advisor
Jan Dollar R.N.

 

 

 

 

General Disclaimer

 

This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.


Materials presented on these pages are copyrighted by William Johnson and Linda B Hurd. Except as superseded in individual documents found here, these materials may not be sold or redistributed for profit in any way without express (not email) written permission of the authors. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD-ROM and inclusion in commercially published compilations (books).

Confidentiality

Confidentiality of data relating to individual patients and visitors to the J-Pouch Group Web site, including their identity, is respected by this Web site. The J-Pouch Group Web site owners undertake to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.

 

CCFA

The Crohn's & Colitis Foundation of America,
Philadelphia, Delaware Valley chapter, is located at
521 Bustleton Pike, Feasterville, PA, 19053.
Tel: 215-396-9100


National CCFA headquarters are at,
396 Park Avenue South, 17th floor
New York, New York 10016-8804
Tel: 212-685-3440    800-343-3637

 

Join Now

Already a member? Sign In

Copyright © 2019 The J-Pouch Group. All rights reserved.

Membership Required

We're sorry. You must be signed in to continue. Sign In or Register
×
Are you sure you want to remove from your Block List?
×
Loading...
×
When you block a person, they can no longer invite you to a private message or post to your profile wall. Replies and comments they make will be collapsed/hidden by default. Finally, you'll never receive email notifications about content they create or likes they designate for your content.
Note: if you proceed, you will no longer be following .
×
Link copied to your clipboard.
×