J-Pouch ForumsGeneral Discussion
Topics
Sorted by last update
J-Pouch ForumsGeneral Discussion
My surgeon allows self dilation if necessary. You can get Heger dilators, if you know the right size. My surgeon said ONLY to pull towards your back; forward can cause issues. I've had to do it a few times, I use a gloved tapered candle (sounds weird, I know, but it's cheap and works... Just make sure it's gloved.). You can use your own gloved finger, too. However. I wouldn't go against your surgeons wishes, and would clarify what to do in those emergency situations. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
I also struggle with lots of gas, and like you, feel I would have less trips to bathroom without it. Gas X didn't help but I take 2 Beano before meals and think it helps. I eat lots carbs but no veggies, no pop and no beer. I take Hyoscyamine, which reduces spasms and that gassy feeling, which seems to be especially noticeable when I lay down at bedtime. It helps, but does not control it completely. When I was on Flagyl, my gassiness stopped- even though scope showed no pouchitis or SIBO. [ more ]
I take some bean-o with every meal, and I eat some Activia every day. For me, cooked veg works fine, raw vegs are more gas-prone. Scott F is right about the carbs and carbonated beverages. I also now totally abstain from alcohol. I've found what (mostly) works for me. Hope you do, too. There are no perfect rules, and one's system does change with time and tide. Cheers, Mark [ more ]
i've found all of Scott's comments, plus probiotics, very helpful. i take beano daily, and it definitely works on some foods, including some complex carbs. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Thanks for the replies all. Yea I think I agree with you on the eggs, however they also don't increase my frequency which is a positive and is a good source of calories and protein which I still need. I will probavly cut back on them though. I didn't mean to sound as though I cannot leave my house for fear of pooping but I have a wedding to go to on Saturday evening and I don't know if I'll be able to. It's a long drive then it's usually around the time of day in mommy active so I just don't... [ more ]
I was out and about in a week or two (except for my trips to the ER for complications). I just made sure to go places with public restrooms. Those first 3 months or so can be trying, as things are not very consistent in regard to what works and what doesn't. I just think that the whole system is very sensitive at first and responds to things we are not even aware of. Jan [ more ]
I left the house immediately post surgery and did errands and long walks. Distraction helps to get the mind off the butt. Sue [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Thank you very much Rachel. Your advice helped. I called the office on Monday and they got me in before the barium test on Tuesday. The dr said it looked pretty bad so they cancelled barium test and moved my pouch endoscopy/dilation over to the hospital so they could also drain the abscess under general anesthesia. I just posted another item because now I have this draining abscess that is full of packing. It's painful, I'm not sure how to have a BM with this packing material hanging out and... [ more ]
I had an perianal abscess start 12/12/12 that turned to a fistula. Life's normal has been topsy-turvey since. Soaking is good. Hot Sitz baths helped me a lot(and con't to do so). Hot washcloths helped it burst back then, but then the fistula happened, and it was all cyclical filling and bursting til I got a seton drain. Two-ish years later, and we're working me up for Humira at this time due to IBD issues of the pouch, if you will. Let your doctor know of this Monday, for sure. If it turns... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Dawn, I am 6 months post take down and mine went away around 3 1/2 months. I found cleaning area (all the little wrinkles and crevices) real good with Vaseline helped, but using really soft TP or Target brand cosmetic pads essential. I also kept couple squares TP folded tucked in there or larger round cosmetic pads helped by catching any leakage instead of it sitting on skin. I like Calmoseptine though when the BB is super bad, the Calmoseprine hurts too much. It's purpose is to be in the... [ more ]
I had ordered "Dr Wheatgrass" for my daughter years ago. It can be ordered on Amazon. The time right after her takedown she used Ilex, it's like a paste and she mixed it with gasoline. Feel better! [ more ]
I'm 4 months post-op and the butt burn has improved a lot over the last month or so. I found that my main issue was with the skin between my cheeks. Sometimes it felt like I had gravel stuck in there while walking. A prescription anti-fungal cream did the trick after a few days and I go back to that when it starts to flare up again. I also stopped using pre-moistened wipes and that helped. I think the chemicals were irritating. The occasional bouts of "lava poop" that I got the first couple... [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
No. My pouch itself is doing ok, generally, and not causing enough grief to remove. We've not exhausted med therapy at this point, either, for the fistula and stricture/cuff issues. [ more ]
have you thought about returning to an ileostomy, rachel. Just wondering because I am a newbie and already thinking about that if I am not happy with my pouch. I know premature, but I liked the bag. weird I guess, maybe if I had it longer I would have got sick of it, but I felt free, slept through the night, was in and out of the bathroom quick. [ more ]
Also, antibiotics will not heal a fistula. Nearly worthless to take them, but I will say that Cipro helps lessen mine from bleeding (though the mucus sticks around, regardless). [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Just a comment. I have been on 3 TNF 'S. REMICADE. HUMIRA. And one other and never had any side effects what's ever. All drugs have horrible potential side effects. But if it works it's a miracle. And REMICADE was a miracle at the time. They took me off it cause I had to have surgery and then no tnf worked. But I was sick as a dog when I tried remicade. It worked like a charm but I had my colon then. Richard. [ more ]
Yes. I rotate every several weeks between cipro and flagyl, augmentin and xifaxin. If you stay on any one antibiotic too long it will lose its effectiveness and, in the case of the broad spectrum antibiotics like cipro, will also kill enough bacteria in your skin that you will be very prone to viral and fungal infections (yeast infections and warts). This is why using xifaxin in the rotation is very beneficial. It gives your system a break and a chance to regenerate bacteria in your skin as... [ more ]
I have been on Augmentin for about 6 weeks straight .I was on cipro before that. My question is should I just stop the Augmentin and go back to Cipro after a certain period of time. I do not want the Augmentin(which has worked great for my chronic Pouchitis ) to lose its effectiveness. I would love to just pop a Aug. pill daily forever but realize that's a bad idea. It seems if I miss a pill I go back to square one. Any and all suggestions welcome [ more ]
See all 17 replies...
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
I have tried drip drop and they don't taste too bad and are supposed to be sooooo good for hydration! They call it a medical grade hydration powder. [ more ]
Make your own out of tap water a little table salt for sodium and a little lemon juice for potassium - practically free. If you must add some splenda or flavor. Basically these drinks are water fortified with the electrolytes sodium and potassium (and sometimes magnesium). The sugar and color aren't necessary for hydration. Try this: http://lowcarbdiets.about.com/...es/a/sportsdrink.htm [ more ]
LOL, have you seen ours? Not much better. Thanks for the info on Nuun! [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Scherl takes my insurance also. [ more ]
She does. I think she's in network for fewer insurance co's than the other doctors in her practice, but she's in network for me. [ more ]
Dr. Peter Legnani, 212 369 2490 is in the same practice as Dr Kornbluth, but Legnani does take insurance. My daughter seems Dr. Legnani. Pluto, I thought Dr Scherl did not take insurance? Hope you find a good doctor for your child. [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
I agree. Several top quality GI docs in the Bay Area. She shouldn't need to travel out of state to get quality care. Hopefully, someone is going with her to her appointments. It is frequently difficult to deal with all of this alone. The people on this site can be very supportive, as well. Best wishes! [ more ]
Heck, there ought to be some great G.I.'s in the bay area with Stanford,or UCLA in L.A. or the Scrips clinic, etc. There's a Mayo in Arizona if you still feel the need to go out of state. [ more ]
What have the docs told her so far? [ more ]
See all 3 replies...
J-Pouch ForumsPouchitis
Why does the oil have to be in a capsule? I think the directions to take orally say to dilute in a glass of water or tbs of olive oil. [ more ]
ciz81, I have been taking the oregano oil for a couple months now with success. I use do terra oil as it was recommended by a functional MD with the correct combination of ingredients and right concentrate. You MUST take the drops in a veggie cap and the do terra oils come in a dropper. You need to start out with a smaller dose like 2 drops in the Am and 2 drops at night then go to 3, then 4 drops 2X day then if needed go to 4 drops 3X a day which is what I am doing. Do it slowly see how... [ more ]
Would oregano oil pills be as effective? [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
If you don't have any problems the best reasons to have a GI are for periodic pouchoscopies (opinions vary as to the ideal frequency), and to be there (with an established relationship) if you develop any issues. [ more ]
Yes, it's advisable to continue to keep contact with a GI after takedown, whether or not this person previously treated you. This is especially true if you don't see your surgeon on a regular basis, or if your surgeon doesn't provide "after care." (some don't; it really depends on the surgeon). If you're looking for a new GI, keep in mind that some GIs don't deal directly with j-pouches, so it's important to confirm that any potential treating GI would be willing to take you on as a patient... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
❤️
I've been eating the ketogenic diet for the past 7 months which is a high fat, low carb, moderate protein diet. My main reason was to control my blood sugars as I have Type 1 diabetes and it has helped tremendously. It has also improved my jpouch. I had been on antibiotics for 4 years and was able to go off them 6 weeks into doing Keto. Keto diet doesn't allow any grains, sugars, or fruits. Most calories come from fat. Go to ruled.me to learn more and there are a number of support groups on... [ more ]
@Susan, thank you for sharing that. indeed I am in the same boat as you. it is miserable. I will go see a dietician too, I've heard that's a better idea than doctors who have no/little opinion on diet. I'm going to try your things too just for the heck of it. This has to be able to beaten! [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Rachel. I hope you get some relief from your pain and symptoms with alternate treatments. I know how debilitating chronic pain can be and how it can really cloud your life. [ more ]
I know exactly what you are talking about, Rachel! When I finally caved in and complained to my primary about my SI pain, I felt like I just was not being tough enough. The pain was not intolerable, but relenting, distracting, and preventing me from carrying on normally. When I got my referral to the rheumy, and she quickly connected the dots, I felt likeI wasn't being a wuss after all. We get used to chronic stuff too easily. Jan [ more ]
Yes. His thoughts for Humira is the chance it *could* heal the fistula. I'm a ball of weird emotions over it: joy, fear, and even, yes, guilt. Guilt, you say? Because... Am I "sick ENOUGH?" I'm a critical care nurse, I see tons of very sick people... And I'm like, yes. I feel a bit of guilt. The problem with an "invisible" disease, and also, I'm not EVERY day in horrible discomfort (though some days ARE bad). I think I've gotten used to a "new" normal, that isn't great, and now, yes, there's... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Hi John, Thanks for that, I'm led to believe the small intestine is connected so it's producing mucous below the loop ileostomoy. 30 Years, that's encouraging - I'll be 90 if I last that long and probably not much worried about pouch performance by then. Central Coast, God's country. I'm in Canberra, came down from Newcastle - what a mistake that was - now kinda stuck, I have difficulty in finding any saving grace for Canberra other than slightly higher employment, but I digress..... Hi CEM,... [ more ]
All of this pre-takedown mucus production won't be noticed once the J-pouch is connected and functioning. What it will do is make sure the passing of stool is smooth and easy! It's bothersome now but shouldn't even be noticed later. My surgeon told me to practice Kegels to stop the flow of the mucus prior to takedown and to strengthen the anal sphincters. Yeah, sure! I was a complete failure! That "stuff" was sooooooooo slippery.....for a reason! [ more ]
Hi Kev. When I had my pouch op done over 30 years ago I would sometimes get mucus coming from my as yet not reconnected pouch when I had the loop ileostomy. The most interesting one was when I ate a tomato and some of the seeds came out in the mucous and nothing else.It gave the stoma sisters something to talk about and to put in their file. Pm me if you would like any more info as I live on the Central Coast of NSW. Regards. John. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Once you feel all healed up you're going to have to start practicing by holding it longer than is comfortable. Just like strengthening any body part. If you poop as soon as you feel the urge, you won't strengthen your sphincter muscles. Just hold it half an hour more than is comfortable. After a while it will take more pressure for you to notice it because you're used to holding it longer. Just like working out - you have to build up some tolerance - then the lower amounts of stool that used... [ more ]
Already sick of pooping? We all have to do it. It will slow down over time. As said it other posts. Have patience. I know it's tough to accept that but it's true. Takes a long time for your body to adjust and while doing that there are situations we have to deal with and a lot of pooping is one of them. 11 months out of surgery and I am still going 8-12 times a day along with the trips where you think you have to go but don't. Good luck... It gets better. Richard [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
I am 11 months since my surgery and boy things improve at a snails pace. But trust me they do improve! I have just started to get some decent sleep. It was driving me crazy not getting g sleep but just have patience as said above. You are fresh from take down and this is very serious surgery to recover from. You are asking or getting your body to do something it is not supposed to do and it takes a while for your body to acclimate to it. I never dreamed it would take this long. But I am... [ more ]
Welcome! 3 weeks post takedown, you're still very early on and you can expect considerable improvements over time. The key is to be patient - it's not an easy process, but most of what you are experiencing will be temporary, and you will begin to notice improvements as you heal and as your system adjusts. This is a great group of people and we're happy to offer advice and support! Hang in there! [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
I enjoy a glass or two of red wine a few times a week. I can also dring white wine and enjoy the occasional beer and even an occasional margarita. I have noticed with the sweeter stuff that it tends to make me go more frequently. Most of the time no matter what I'm drinking it doesn't really seem to bother me. I drink a lot and I mean a lot of water so don't typically have problems with getting blockages from alcohol. I was pretty young when I had my surgery and recovered very well and over... [ more ]
Any alcohol in moderate proportions is fine with my pouch, BUT over done equals a blockage. I imagine that it's due to the alcohol drying the system out and when I'm drinking that much I forget to drink water. On an excursion vacation in Jamaica a few years ago.... you know how it goes; everything is inclusive..... including the drinking bars. The last night we were there, they had a Chocolate Martini Bar. Those sound terrible if you've never had one, but after the first time I had one. [ more ]
Interesting. Wine actually seems to irritate the pouch in my case; more than half a glass (red or white) and I'm dealing with increased frequency. I've never really been much of a drinker, though, so that could be part of it the reason. That being the case, I do enjoy an occasional Guinness. Many people on this forum have stated that beer irritates their pouches or causes gas. Thankfully it doesn't seem to make a difference either way for me, so when I do indulge in a pint, I can do so worry... [ more ]
See all 9 replies...
J-Pouch ForumsPouchitis
Thanks, CT....I eat loads of peanut butter, unfortunately, it's usually on "BREAD" or a bagel. I cannot eat bananas as they usually give me blockages...I think that going to a nutritionist is a great idea and one that I have been toying with for a while. I am also trying to increase my protein intake as well and am trying to each lunch, something that I haven't done for awhile. The more I eat, the more I have to empty my pouch, and butt burn here I come. I feel as though I'm chasing my tail... [ more ]
Mema On most of these diets monounsaturated fats are allowed. You may want to increase your intake of natural fats. For example, natural peanut butter, the kind with peanut oil not removed. You may also want to slightly increase the portions of the proteins you are consuming. Because of differences in metabolism and nutritional needs I would recommend consulting a registered dietician. It could be that the anxiety has reduced your appetite and you just aren't eating enough. Try snacking on... [ more ]
Just wondering, with all of these diets that eliminate sugar and carbs, is it possible to gain weight? I have lost a significant amount of weight due to a combination of having some problems with my pouch and also anxiety. I am now trying to gain weight which is a very slow process. I have lost a total of nearly 15 lbs. and am trying to gain some of it back, which seems to be a very slow process. Any ideas of what I can eat yet try to stay off of sugar and carbs. I would love to try a diet... [ more ]
See all 14 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Thanks so much lholdem, and i have so much respect for you going through pregnancy with a j pouch, your baby has a very strong mummy! xxx [ more ]
The leaking was definitely exacerbated by being pregnant. I am dealing with it a bit again as I have another bout of pouchitis, but nothing like when I was pregnant. It was like my pouch had no room to fill up so whenever I had gas or something coming in, it was really hard to keep a little leak from coming out :/ In general I felt way better right after delivering - even with the incision from the c-section. So good news, pregnancy didn't seem to "cause" issues; bad news, pregnancy made... [ more ]
Hi lholdem, awwwwww thanks for the comment, it is definently love, i cant get enough of the little things! lol Thanks for your reply also, its good to know the pouchitis was treatable, i think the nurse is very concerned with the sphinters and hernias, all the pressure on it all...did the leaks stop once you'd had baby or did it cause a more permenant problem? Thanks again, Sally xxx [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Been wearing Depends Real Fit for men at night. And, if I'm having a bad day I'll wear them during daylight hours. No one can tell I have it on. [ more ]
I haven't found any. Maybe someone else has had luck. I wore Tena diapers every night for the first several months. Katie [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
Oh, wow. I'm sorry for your trials! I was sent to Mayo Clinic, MN for a second (third?) opinion and I really had an amazing experience there. My issues were the cuff and fistulas for sure and they wanted to save my pouch. In the end, I ended up with a perm ileo this spring. I'm doing really well! I had problems with nightly accidents when I had my pouch and I will say that diet totally changed this for me. It's different for everyone, but the SCD/GAPS diet fixed that issue for me. No refined... [ more ]
The Mayo Clinic also knows what they are doing when it comes to j-pouches. Mayo and Cleveland Clinics both have locations other that their first clinics in Rochester, MN and Cleveland, OH You might find it more feasible to go their locations in Arizona. [ more ]
try cleveland clinic as a start..from there you should follow this site and start to try the different things many of us try to better our situation.. my pouch did not look really bad,i have no biopsy finds but let me tell you i got a trouble intestinal situation..so i tried diet still on to cut down bad bacteria ..i rotate antibiotics as do others on this site,maybe these things will cut down your many drugs..that would be improvement and bring down your b.ms to 10 or so..incremental gains... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Last night I was up four times. I am not having cramping or anything, but it was still pretty bad. I think I am due for a follow up in 2 to 3 weeks so i'll give it a while longer. Hope it gets better. [ more ]
I didn't have an exam before starting the cipro. I had been calling my surgeon's office every couple weeks with updates on my progress. After a few months, I think he finally decided that this wasn't part of the healing process any longer! I had lots of urgency, accidents, cramping,constantly feeling like I was holding back a bm, pain (anal and pelvic floor), leaking a lot at night, having to get up 3-5 times a night. It was very rough, and now that I know how it should be, I can never go... [ more ]
During the first two/three months I often felt there was something sharp pushing down on the anus.I thought I had an abscess or at least hemorrhoids but apparently not. I bought a hemorrhoid pillow which made sitting more. I found the psylliun (metamucil) and imodium helped to thicken and slow things. But I'll tell you, I do think it was just time that made it all go away. I noticed a difference at three months and a very large qualitative difference at 4 months and really haven't looked... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
A one-step procedure has plenty of advantages, though most surgeons seem to get slightly better outcomes from a stepwise approach. I *chose* to do the whole thing in a single step (one quick operation, one miserable hospital stay), and I'm glad I did. I was able to get back to work about six weeks later, and I was done with it. [ more ]
I had my initial colectomy and ileostomy in May of 2012. In November of 2013my surgeon took down my ileostomy and formed a j-pouch all in one surgery. I too had a tube in my nose (NG) for 10 days until my bowel decided to wake up and start functioning. Since then it has been smooth sailing. The surgeon did not know if he would be able to do it all in one step but he worked his magic and I love him for it. [ more ]
Thanks spooky I asked my friend about the ileostomy again. He said it wouldn't stick. I guess that means there wasn't enough bowel? I remember my loop was very flush to begin with [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Two things that come to mind: - my pouch always functions better when I'm well rested and getting enough/restful sleep, - if I'm in a deep sleep, I usually sleep through the night without having a BM. If I'm sleeping fitfully, then the urge wakes me and I have to have a BM in the middle of the night. So no, I don't think it's crazy! Whatever the reason, better function is better [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
This could just be pouchitis, for which you've not yet found the right meds. There are certainly more to try, including some combinations (e.g. Flagyl + Cipro). If you go too frequently the stool will tend to be mare watery. I don't get why/how Metamucil made you bleed, though. What about a probiotic, like VSL? [ more ]
Thanks everyone for all your feedback! Scott- I kinda always feels like I have to go, though I have gotten a little better at telling when the real emergency is there. Usually while, and immediately after eating. Ljz and JJA- Lomotil helps some if I don't take it consistently so I usually save it for traveling and appointments and things. I used to take Metamucil but lately it seems to make me bleed a bit? I just got some Citrucel capsules to try though. ks- I had c.diff a few months ago and... [ more ]
Have you been tested for any other bacteria or parasite infections? I just ended up with C.diff last week but I asked to be tested for everything. I'm on Vanco for 10 days, as of today things are starting to become more "solid". [ more ]
See all 10 replies...
J-Pouch ForumsK-Pouch Korner
Myriam, Please contact the IBD center at Mount Sinai hospital in Toronto. They are specialists in this. I do not know your situation (financial) but they practice out-of-province rates for Canadians and could help you. This is what they do best. See about getting an appointment in Toronto for a consult and find out if they can take a look at your file first. I would suggest sending it all (after calling first) to the office of Dr Zane Cohen. His secretary's name is Rina and she is very... [ more ]
Hi Sharon! I really would like to talk with y. But I don't know how to go to privae message so I could libe y my phone or vis versa. Can y do it invite in some way so I could either call y or y call me at anytime. I guess we are about 5 or 6 hours apart. It is indeed Very hard for me. What y are now explaning was Never explained to me by any dr!! I feel like they don't care. I also will need to find alternate Dr I am affraid and need to know cost and risk now for me. My abdomen is very... [ more ]
Myriam, It sounds like your valve has 'invaginated' meaning it has sunk inside the canal. It happens and yes, I am sorry to say it happened to me in 1999 right after surgery on day 17 when they removed the sutures too soon and one side of the stoma slid inwards and caused a valve twist and then again in 2007 when the sutures let go completely...the whole thing sunk in about an inch which meant that the valve was no longer attached to the skin surface to keep the skin open...So it started to... [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Glad you have some better news! I have my EUA Sept 30th. Katie [ more ]
I'm glad you were able to connect better with the second doc, Andy. [ more ]
Wonderful! Well, as wonderful as fistula related news can be, anyway. Glad you found a doc willing to explore more conservative options with you! [ more ]
See all 19 replies...
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Hi Allswell, It happens to a lot of us post op, during periods of illness or infection or general systemic weakness...it also happens to everyone every fall (that is where the name fall comes from). You need to be reinforcing your system from both inside and out. Supplements are important (zinc and other trace minerals, collagene and certain B vitamins, healthy oils & omegas and of course seaweed is full of natural iodine and other goodies...), lots of healthy protiens (fish, seafood,... [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
They left the stoma site, where they stuck your intestines that were sticking outside back into your body, open as it is considered a dirty wound. Those type they want to heal from the bottom up rather than stitching them completely closed. I know what you mean by the stool getting kinda stuck there as I still feel that way sometimes. I think it's a little harder for it to pass through there for some of us in the beginning as that part of our small intestine was looped up though our skin and... [ more ]
I'm sorry I have no tubes? it feels like maybe stool is getting kinda stuck in there it's on the right side.they left the stoma hole open that I put gauze into everyday to heal from the inside out is what the dr toldme [ more ]
Perhaps it's the drain site you are referring to? I would imagine they checked to see that you had drained sufficiently before removing it and that you are not pooling blood etc in the area. Or is the tube still inserted? [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
How's your daughter doing Becki? Amstobar, It sounds like you went through a few months of HELL. I'm glad you are doing well now [ more ]
I had what was likely an ileus during some of my procedures. I had an ng (and then g) tube for a few weeks and was on tpn for two months. I was in the hospital for over a month during this. I blame it on surgery trauma and stress. The bowels are weird things. What finally turned me around was switching to a doctor I trusted, being able to finally go home, and weirdly, watching Diners, Drive ins and Dives. I went so long without eating (2 months), that I was dying for something real to eat. [ more ]
So sorry to hear your daughter is going through all of this. Could she have an abscess somewhere? My daughter had one after surgery, a pouch inlet revision, and it was very painful for her. They found it on the ct scan. Hope she gets answers soon and starts to feel better. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
A lot of us got tattoo''s after our surgeries. I got one at age 55. It's an ancient angelic symbol that means "Acceptance of Optimal Health" and it's on the inside of my right wrist. There's a lot of us that shared pictures of our tat's on a j-pouch facebook page. One gal has your semi-colon on her abdomen! [ more ]
<quote>Maybe I am missing the point here, but for the life of me, I don't understand why anyone with a J-pouch, Crohns or UC would wamt to subject themselves to tattoos...!!!</quote> Because it's not subjecting yourself to anything...it might be about taking control of your body after some of that control has been ripped from you. It also might make you laugh, which this tattoo does for me every time I see it. And after the year I've had, I can use more laughter. [ more ]
You can also use Henna! Might last a little longer. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Since that post I've fired that neurologist. I think there is hope for pelvic floor pain with physical therapy. Have you discussed this with your urogynecologist? As for my other adhesions I have and still do some self massage when I feel them to try to break them up. I don't know how to explain this in a better way that that but it has helped plus I've found out I do get pouchitis not just IPS as thought before. It's pretty hard to diagnose if it's not active when you have a pouchscope. It... [ more ]
I may not know what I am talking about, and this wouldn't be the type of doctor to ask, but, since no one else seems to be able to help....my urogynecologist says that most ppl. with major abdominal surgeries will have nerve damage...I don't know if it could cause what u r talking about, but not sure why not....unfortunately, he also said that "going in there" to release adhesions might just make things worse (I may have to resort to it, though...my nerve pain is upper left quadrant, also... [ more ]
Thanks Jan, I asked my Neurologist is there could be nerve involvement/damage from all of my abdominal surgeries and he said no. I need to explain to him exactly what all of the surgeries involved. When is it a last resort? Do I have to suffer the rest of my life? Even if I ditched my well built well functioning j-pouch, that gets cuffitis, for an ostomy I'd still have the adhesion pain and something resembling IPS/IBS in my remaining intestines right? Plus a 6th surgery to cause more adhesions. [ more ]
See all 10 replies...
J-Pouch ForumsWomen's Health & Pregnancy
I have an appointment scheduled in Cleveland Clinic with Dr. Mona Orady. Anyone know her or of her? [ more ]
Reguiero seems to be in the know with pouches. In fact, in some online searches, his name was tagged to some pouch research. I feel pretty ok with him; he seems awfully thorough. [ more ]
annie as a pittsburgh person myself... I might suggest that you go to Cleveland and at least get a consult. The colorectal surgery jpouch specialists ARE in Cleveland and they seem to work very well with their colleagues in other areas.. like gyn. and urogyn, etc.. In fact I have had a urogyn and cr surgeon together in the operating room for one of the many surgeries I had at CC. The reason I ended up at CC was because of prior cr surgery problems done by some pittsburgh cr surgeons... both... [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Would be interested to know if others who do not have crohns have high cal protectin? What is the inflammaton from if not crohns or UC ( with too much colon). Does SIBO cause high inflammation? [ more ]
I believe that we j-pouchers often walk around with some chronic evel of inflammation. As one of my better docs once said to me "we need to treat the patients not the numbers". So, if you're at 5-6 bms a day (a number I have never ever achieved) I wouldn't worry about it. [ more ]
Wow, this post was over a year old! Lots has changed I did have my calprotectin tested a couple more times since then -- my GI likes it. In April I had C. diff and my calprotectin tested at 1334, an "all time" high for me. This is normal for anyone with C. diff infection, IBD or not. Subsequent to treatment with Dificid (miracle drug), my calprotectin was 164 in May. I haven't been tested since then but may do it when I go for a check up in November -- I'm curious to see if 164 if "baseline"... [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
OK, I saw the NP today. I went in with a positive attitude, was looking forward to working with her. Disappointment! She asked me about 6 times whether I was having stomach pain. When she asked whether I had any procedures done in the last year, I answered I had an EUA done in April. She stared at me ... E...U...E? A? ME: Um, yeah, EUA. Exam under anesthesia. She nodded. She has only seen 1 or 2 jpouch patients. She was in her late 60's - "not that there's anything wrong with that", but it... [ more ]
I use my GI like a primary. Every time I have tried to be understanding and compliant. I am horribly disappointed! I have had numerous doctors do that poke all over your belly thing and you seem fine thing. Yhen they look at my file and say oh looks like you've had some surgeries. No that huge scar is for fun!! And really I feel as if its getting worse. My insurance changed this year and I'm constantly having to justify why I need things done. Absolutely ridiculous. But it could just be... [ more ]
The scheduler at my GI's office never knows what a j-pouch is either, but she isn't even there for the scope. My GI now just writes "patient knows how to prep" when he orders the scope, to avoid all the discussion about it. I am sure that a lot of patients try to tell them that they don't need to do the standard prep... Good luck with the NP, and I hope she's working with the same GI. Jan [ more ]
See all 13 replies...
J-Pouch ForumsPouchitis
I had to take 6MP for the first time when I was diagnosed with having the CMV virus to get rid of it. Dr Shen at the Cleveland Clinic found it after a scope and I was told the cause of the CMV virus was because I was on Cimzia. From my what I know about CMV, it is a very bad virus to have. Fortunately for me, it had not entered my blood stream or there would have been some very serious consequences. Therefore, I am not a candidate for any Biologics type medications. Jan, have you heard of... [ more ]
JJA, Not sure who the Dept Chair is now, but I saw Dr William Tremaine, who at the time was Dept Chair, and also Chair of the IBD Clinic at Mayo in Rochester, MN. I literally put my life in his hands. I was on Imuran and Remicade (neither had any good effect for me; had to have colectomy and j-pouch for my UC). The entire staff in Gastro at Mayo is very highly regarded. They will give you good advice, but as always you need to have a solid relationship with whomever you are seeing. best of... [ more ]
Stay away from Imuran it is a nasty drug. I was one it and it caused a lot of problems [ more ]
See all 23 replies...
J-Pouch ForumsGeneral Discussion
Hi Lively, Love the name...I would never have dared but there you have it...those who dare, succeed! I don't think that a fancy machine is necessary...I have a real blender and a hand held type and I use the hand held one 50xs more than the 'real' one. It is just easier to use and I don't even think about it or clean up. I blend chopped veggie salads, fruit salads, soups and stews...they all get the chop and I can slurp or sip without a hitch. As for veggies that I can eat whole...A big part... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
I would imagine there are good surgeons in the Bay Area, but if you come up empty, I recommend Dr. Phillip Fleshner in Los Angeles through Cedars Sinai. [ more ]
What do the docs at UCSF say? Jan [ more ]
I would also go with whatever Dr. Shen in Cleveland suggests. If the issue is mechanical, can you have it redone? I know Dr. Feza Remzi in Cleveland redoes pouches so it might be worth getting a consult for that rather than removing the pouch entirely. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Where is the pain located? Personally I had very bad back pain when I had the loop ileostomy. For me it was better in the morning and then as the day went on it got worse and worse until I went to sleep. I was prone to blockages as well so I couldn't/wouldn't take painkillers besides Tylenol, and I suffered a lot. My surgeon said that it was because the loop ileostomy was placing a lot of tension on my intestine and once the ileostomy was reversed the pain would go away. He was right -- I... [ more ]
Thank you for the encouragement Richard. It really means a lot. I thought I might get more feedback from other j pouchers....every little bit helps as this whole journey can be a bit lonely [ more ]
As for the pain meds.... I had to use them for a long time and am having to be weaned off them. But I needed them for all the pain. I also had a not so good experience with the surgery. Not like yours but painful for a long time.... You just had the surgery. It's major and now it takes a long time for your insides to do something it was not designed to do. Patience. It gets better. I never thought it would. But it is so slow in coming. Been 11 months since mine and I am still healing. Worst... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
I would be afraid of what the tattoo might say in 30 years from now. [ more ]
Nice to hear it from an ER nurse's point of view! Makes total sense. I thought of the tattoo idea, too, haha! Katie [ more ]
I have one but it constantly breaks (I've had many over the years and they all break). Probably because I wear it swimming (but I can't take it off and if I change the clasp to one that I can open myself, they always break and the stupid bracelet falls off). Since mine is currently broken I think I"m giving up. [ more ]
See all 13 replies...
J-Pouch ForumsHelp! Need advice now!
Hi Debc, Could the lasagna be blocking you up? Is this the first time that you have eaten something that has done this to you? Are you cramping? Can you keep fluids down? Throwing up? If you can then stick to hot tea (green tea is very good), water, diluted juices and try a heating pad on your tummy. Walking around can help some too...get up and walk around the house or the block. Some food can give you a machanical blockage (like a traffic jam in there...it may have been too pasty with all... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Thanks for the replies. To be honest my biggest concern is the pill either getting stuck or not passing. I don't want to have to endure a surgery just to get the thing back! I would like to see what's going on in that "mystery" area though. Thanks, John [ more ]
Hi John, The capsule endoscopy is a VERY useful and effective tool to find an unexplained bleed in the GI tract. It is less reliable for other uses, such as finding inflammation..... To be honest, I don't think there is a real "danger" in having the pill stuck at any point along the way. If you think about it, if the pill ends up getting stuck, it is telling you that you have a area of your intestine that is extremely narrowed. This can be a "useful" suggestion and diagnosis in itself. If... [ more ]
I had several capsule endoscopies while I had a J pouch and had no problems, however I did not have any bowel obstructions. Use of a wax pill beforehand sounds like a good idea. [ more ]
See all 3 replies...
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.
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
Already a member? Sign In