Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsGeneral Discussion
hc suppositories for cuffitis
W wiggles
jeane Dr Shen indicated you can take the suppositories forever..although my surgeon is opposed to long term cortisone suppositories for skin thinning reasons. i am sure Shen meant on and off, not continually. Canasa is the better long term treatment but it obviously is not a good solution for you. Aside from the hydrocortisone the only other thing I am aware of rectally is kenolog injections (also a steriod but longer lasting)and belladonna suppositories (for spasms mainly). If your issue becomes... [ more ]
TE Marie I think over all only 4% of j-pouchers get cuffitis but can't remember if that is just 4% of UC j-pouchers or not. Please Google about it as there are several good papers out there that discuss problems with j-pouches and tests preformed. Dr. Bo Shen, of the Cleveland Clinic is always one of the authors. They give you a good insight into not only how rare but the medications tested. I believe canassa is best but if you can't take it the Anucort suppositories may be the only alternative. [ more ]
wiggles what are the stats on acute cuffitis vs chronic? [ more ]
See all 15 replies...
J-Pouch ForumsHelp! Need advice now!
Liquid Diet
M Megals
Jan Dollar Ensure is usually a pretty safe bet when you are on a full liquid diet. It is lactose and gluten free, and tolerated by most. the main thing is that it is balanced nutrition, without any roughage that could add to obstructive symptoms. It is not as low residue as an elemental diet formula (which is prescription only anyway), but it should suit you fine. You should shoot for a minimum of 4-6 cans a day, which would be 1000-1500 calories. 4 if you getting calories elsewhere, 6+ if you are not. [ more ]
Megals He didn't say clears only, just that he wanted only liquids to see if things would begin to pass. I figured I would do mainly clears, but also maybe for dinner or something get some other non-clear, liquid like smooth tomato soup. I will forever hate broth, Gatorade and jello because of all of this crap. (Pardon the pun) [ more ]
JillM Is this a full liquid diet - meaning only clear liquids? Or can you have milk and milk products? I guess I would want more info from dr, unless you know he said clear liquids only...Chicken broth is a big one, pedialyte (an electrolyte replacement for kids that doesn't have added sugar like Gatorade), apple juice (which goes right through me), etc... [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Post-op bleeding after step 2 - now clots????
M mom2panda
mom2panda Thanks, Jan. I ended up having a lot of bleeding on Sunday overnight. It wasn't just in the toilet, I had to wear pads - 2 of which I bled through. Weird stuff coming out too. Yesterday morning, the bleeding had stopped. My Dr ordered a blood test and said if it continues, I would need a pouchoscopy to check. Bleeding started again last night, but not nearly as much. Just passing some with small clots when using the washroom. I have updated my Dr and am waiting to hear. [ more ]
Jan Dollar If it hasn't resolved by now, you should call your doctor. Jan [ more ]
mom2panda So the bleeding is increasing and now I am passing small clots. Is this still normal? Thanks so much...trying not to be a nervous nellie but not entirely succeeding. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Who has FAP????
L LilMoe03
ghostthepast i have f.a.p and had my first surgery when i was 20 in 2000.message me if you would like. [ more ]
Chuckus Hello. I'm just seeing this and will get into this tomorrow........I've been away, tending to family matters. [ more ]
skimzuma I am a 22 year old guy who has been diagnosed with FAP (at age 19) and undergone my j pouch surgery two and a half years ago. I had problems with needing to frequently use the bathroom and not knowing when I would have to go, but as time passed I begun to feel better. I would assume that because your son is younger it is a bit more difficult for his muscles to adapt. If you or your son would like to talk to me you can email me at christopherrimmele@gmail.com I know its a very tough burden,... [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
fluid behind incision??
B beckysmom
beckysmom Thank you Jan. When the surgeon drained it last week, when it was the size of 2 eggs, it had blood tinged fluid in it like when it was left to drain. Now it is much smaller, like a smashed marshmallow and the GI dr saw her yesterday for follow up and said it was okay. Thank you! [ more ]
Jan Dollar This is a seroma, pretty common complication, but fairly benign. It is caused by a pocket that does not collapse right away, usually due to some bleeding between tissues. I had this after 3 of 3 surgeries (c-section, j-pouch, hernia repair). The last time, I had to have needle aspiration drainage 3 or 4 times. Eventually, the pocket stayed collapsed. Jan Jan [ more ]
skn69 If there is no infection then she is fine to go back...she just has to watch it carefully and avoid physically stressing the zone...(no surfboards or bodyboards please!)...I litterally popped one open 8weeks post op by laying on a body board and floating in the sea...it never occured to me that the pressure would pop it, I am dumb that way. It ususally feels like a hard oval of round lump under the scar and it will slowly get smaller...she only needs to keep a vigilant eye on it and let her... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
issue with taking miralax for stricture?
J jeane
pauln Jeane, Sorry this is happening to you,it is no thrill trip for me although my attitude has hardened and i am in this to win it if possible.I do not want to go back to the bag if it is all posible and i am hoping you won't either.The information you get by reading all the posts on this site is priceless and has helped me turn around a negative attitude.Jeane to you better health and i hope you will feel better in the near future. [ more ]
jeane I guess I am still in denial Liz. My pouch function is really acceptable(aside from the straining from the stricture). I am still bleeding while on antibiotics and suppositories so I know it is not a good sign. I am having a scope with my GI in the next week and we are going from there. I cannot tell if my pouch is bleeding or if it is the cuff and the rectal ulcers. My GI works very closely with Dr. Remzi, so I am sure he can help me work something out. I am very concerned about this... [ more ]
liz11 I personally never had any side effects with lactulose. In fact, I thought it was one of the most innocuous drugs I have ever taken. So in case miralax doesn't do it for you.. lactulose may be worth a shot. hope one of these gets you some relief. fyi... something also just to add to your thinking mix.... dr. remzi's surgery schedule is generally booked pretty far in advance.. unless of course something is a dire emergency. It was four months for me to get on the schedule once we decided to... [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Stricture?
M Megals
beckysmom Call the service. You shouldn't have to wait till tomorrow. [ more ]
mgmt10 I'm in Ringoes which is about 30 minutes north of Trenton. Hope your dr. Gets back to you soon. It's always aggravating waiting for those call backs! [ more ]
Megals Well, the on call doctor never called me back :/ I guess I'll try again tomorrow. I live in South Jersey...Marlton to be exact. How about you? [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Needing advice
B Blairisking
Blairisking Just want to say thanks to everyone for your time and consideration to answer me back. its great knowing that there are people out there who want to help...Take care [ more ]
Dog Eventually, you will figure out how to pass gas without crapping yourself. Practice at home. It will take time for your system to figure things out again. . .I'm 4 years post takedown. Give it a few months and things start working like your old plumbing. Except for me, when I get the urge to urinate, I have to go RIGHT NOW. Other than that, things are normal. 6 weeks out, you might have just moved back to normal food (no more low residue diet). Just adds food back to your diet slowly to... [ more ]
CeeeeCeeee I'm over 10 years post takedown and once in awhile I experience the sensation of needing to have a b.m. when what I find is gas only. I am glad I visited the toilet at these times because I'd rather be safe than sorry. Thank God it doesn't happen that often anymore! Sounds like you are doing very well. Usually I can tell the difference between just gas or needing to actually have a b.m. You will also. It just takes awhile! [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
6weeks in and still having 10bms a day.
B Blairisking
Dog Your BM's will gradually get lower and lower. Your body is still adjusting to the new setup. Immodium is your friend right now. Ohh, and if you don't have Calmoseptine yet, you might want to get some. Butt burn and butt itch, if you haven't experienced them yet, are coming. . .and then it passes. I found a bidet was a HUGE help in keeping my butt clean without using TP (TP chaffed something awful!). That stream of water also helped with butt itch. Congrats on your J-Pouch!!! Honest, you're... [ more ]
Blairisking Yeah I'm taking loperamide. Which does help, still trying to find a balance. Knowing that 10 times is ok for 6 weeks post op. puts my mind a rest a little. Thank you for your reply [ more ]
mgmt10 Are you taking Imodium or anything like that? If not, ask your dr. about taking something to slow the bowels. 10x a day is pretty good for 6 weeks after but I can understand the concern with your job. Stay away from too much sugar...I know that makes me go more. It's tough to suggest what to eat since its so individual. Your frequency will go down in the coming weeks/months. Hopefully you have no urgency. I can hold it for hours if I have to. It gets really uncomfortable but at least I can... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
treadmills
J Jenmystique
Scott F Physical activity is good for you. In the beginning you can use the treadmill for walking, if the weather is nasty or you prefer to walk indoors. As time goes by you can step it up as much as you like. I would strongly suggest that you enjoy safe physical activity whether it speeds you up, slows you down, or does nothing in particular in that area. It's not all about your bowels. [ more ]
suebear Exercise increases motility for me. However, I don't let that stop me, I work out 5-6 days per week. You will learn to juggle what works for you; diet, bowel slowers, fiber, etc. Sue [ more ]
liz11 Generally vigorous physical exercise slows down intestinal activity. One of my docs told me because blood flow to the gut is reduced and focused on more major organs during strenous activity. But then beware... when you stop.. its potty time! [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
3 weeks post op--- Help a Momma out?!
T tblackburn
liz11 Possibly time to get her back to a GI doctor who specializes in jpouches? Oftentimes they are far more knowledgable at managing patients post surgery. [ more ]
skn69 Better than maxi pads are the adult or kid diapers...no joke the really thin ones that you can walk around in without problems...also supply her with enough dark colored plastic bags so that she is not walking out of the stall with a soiled diaper...when I was in grade school the teacher/principal had a letter from my parents explaining the situation...therefore I had a full change of clothes in school for emergencies in the nurse's office, a full run of necessary things (wipes did not... [ more ]
dawn58 This is not the solution, but wearing a maxi pad might help until she has better control. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
mixing tylenol and anti-inflamatories
skn69skn69
beckysmom Sharon, Hope your pain can be controlled or lessened with the these meds you are taking now. Let us know how you make out with Rhumy dr. [ more ]
skn69 Jan, I just saw my GP who put me back on 1 month anti inflamatories (500mg Naporine 2xs/day) and 1grm Paracetabol 3xs/day and sent me home with a letter to see a Rhumy...suggestion AS. Been a bit better since I started the anti inflamatories and antibiotics last week (larengitis, otitis etc...cold season has hit hard)...so I will find out shorty if it is just plain old inflamation of something more... thanks for the suggestion Jan Sharon [ more ]
skn69 I just followed the link and read the article..Yup, that sounds about right. I also have 18° S curve of scoliosis which leaves me looking like a bonsai tree on bad days. My pelvis is rotated forward on one side. So there is never any relief for this pain...I will print the article and take it with me to my rhumy, maybe he will listen... Thanks Jan Sharon [ more ]
See all 16 replies...
J-Pouch ForumsGeneral Discussion
The international space station toilet - we're so screwed!
LionsPrideLionsPride
Breezie Thank you for posting this, it was really interesting! I'm going to watch it again with my 6-year-old son, as all things related to bodily functions are of the utmost fascination with him, ha ha! [ more ]
Scott F TP is my "sky's the limit" luxury. My wife was reluctant to buy the expensive TP I prefer, but I made it clear that my only regret is that we can't find even more expensive TP. [ more ]
Space-baby Thank you for posting the video. I always wondered about how things work up there so the tour really fascinated me. And I love her hair! Re the Russians' preference for rough toilet paper: I think it means that they were so used to whatever was available in Russia that some people couldn't adapt to new western, democratic tp. You'd think they be glad for something soft but maybe with something so intimate some people didn't want to make changes, which I can understand. They got soviet... [ more ]
See all 10 replies...
J-Pouch ForumsPouchitis
VSL and probiotics
N notsotough
Subzeromambo LoveLife, VSL#3 is one of two probiotics that I found research confirming its efficacy in putting ulcerative colitis in remission http://www.ncbi.nlm.nih.gov/pm...3033537/?tool=pubmed . Originally I found a much better article that used a sample of 2,000 people studied over a three year period. It may have been a German study which is why I am having trouble finding it again. I was told it takes at least three weeks for the healthiest bacterial balance to be achieved. If you are taking... [ more ]
LoveLife Thank you again for your comment, Scott. It seems to have helped me too these days, though I am a bit worried, since my pouch, which usually sounds like a thunderstorm and feels like I have an alien inside, has suddenly become very, very silence. But it still works, so maeby this is just a positive sideeffect of the bacteria... I hope. Have a great Sunday. [ more ]
Scott F Probiotics are gaining some traction in the medical community, but it's a slow transition. The research is kind of spotty, and the theoretical basis for them is still very primitive. The array of bugs that constitute a healthy microbiome surely numbers in the thousands, and we eat one or two or six species. The acid in the stomach likely kills nearly all of them, and the few surviving bacteria seem to help some of us, while they give others gas. All that being said, I take VSL #3 and I think... [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
Visit to Dr. Bo Shen
buttoutbuttout
n/a Forgot to add - Dr. Shen will go through your medical records with you. This took quite a bit of time... [ more ]
n/a Hi buttout (love that name!) There are a number of posts here from those of us who've seen Dr. Shen - you might still be able to find them by clicking the "find" button and searching for Dr. Shen. But here's my experience ... I'm not sure what you have scheduled - office appointment? Pouchoscopy? Other tests? My first visit was an office appointment and we - my husband and I - sat in his office and discussed my situation (pouchitis/cuffitis/fistula). He explained everything, drew pictures on... [ more ]
clouseau I am going to see him feb 6th. Do you have a pouch or are you considering one? Was there a specific reason to visit him, min was for a stricture above the pouch. Thanks [ more ]
See all 3 replies...
J-Pouch ForumsOstomy & Skin
one hour????
I itsnotsherry
skn69 Cataja... I agree. As for digestive speed...Any fruits, fruit juices, liquids including non meaty soups etc if eaten on an empty stomach (like in the morning)go through me in less than an hour. If I eat them with other foods like breads and meats they can take hours. As for the lovely green greens or the bright orange oranges...yup, they come out the same way they went in...fiber, pulp and all. (I like endive/grapfruit salads...I chew well...I get back a full endive/grapefruit salad in... [ more ]
Cataja Last week I had a cup of tomato bisque soup...I hadnt even got up to put the cup in the sink when my bag filled with warm liquid...couldn't have been more then 15 minutes...unfortunately I'm not losing weight... [ more ]
Jan Dollar Yes, you get nutrients in an hour, believe it or not. But, until your ileostomy fully adapts, you probably need to reduce roughage, at least with a meal, to improve transit time. Or, you can take Imodium. However, if this is just an occasional thing, I would just ignore it unless you are losing weight or are dehydrated. Jan [ more ]
See all 4 replies...
J-Pouch ForumsPouchitis
? for patients of BoShen loose BM without frequency?
FM Former Member
Donna H Katrina, It's been awhile since you posted and hopefully you have figured things out. However, I had seen Dr. Shen five years prior to an email I sent to him. I was having some concerns so emailed him and we exchanged emails for a couple of days and guess where he was.............China. This was unbelievable to me but this is the kind of doctor Bo Shen is. I was so grateful that I sent him a few dozen of an assortment of homemade cookies. He emailed me back at how much he appreciated what I... [ more ]
Rebe0505 hi i am dr. shen patient but i think jan`s advice is right on or best answer..by the way when i go once a year to see shen we tape record his entire visit with my husbands iphone..its amazing to hear things back..lots of info..and aside from that after being doped up for exam i am a little out of it.. [ more ]
Jan Dollar I haven't been to Dr. Shen, and your case seems pretty unique. Have you tried emailing him and asking him for the short version of his theory? Another approach would be to ask your current docs to get your records from Cleveland Clinic, or contact Dr. Shen for his input. You also can request copies of your records from there for your own personal file. Those approaches approaches may be better than trying to piece it together from others' experiences. Still, hearing from others might jog... [ more ]
See all 3 replies...
J-Pouch ForumsWomen's Health & Pregnancy
When to start maternity/annual leave?
S Sarahbp55
Kate1026 I have an ostomy and I worked up until the end, but if I had the choice, I would totally take off a week or two beforehand. I was miserable at the end. [ more ]
Daisy18 My c-section is schedule for March 4, which is a Monday. I'm planning to work up until the Wednesday before and give myself a few days off to relax. I think I'll go stir crazy if I take off too much time :-) That is if my baby boy hangs on that long! So far my pregnancy has been great and other than feeling tired I feel good so hopefully that continues! [ more ]
Comber My due date is the 20th and I am still working 2 jobs. One is a desk job and one is part time waitressing. Staying busy and active is really good for you and the baby if you can do it. I agree tho, I am taking 12 weeks off after the baby to spend as much time with him as I can. And I am having a natural birth with a jpouch. [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
GI tract waking up after surgery
P Pluot
beckysmom They were talking about doubling up on the rooms when my daughter was there. Are you drinking enough? Well, I guess so now that they have you back on liquids. The food they serve in hospitals always amazes me. The jello is always RED and then they ask have you seen any blood in your stool? Get another color jello! I was always running to the store for my daughter. Hopefully things will be moving again shortly for you [ more ]
Pluot Sigh... having a bit of a setback... I haven't had any stoma output since before lunch, about six hours ago. I had a pretty light lunch -- a few bites of mashed potato, some cottage cheese, some chicken soup and then went for a long walk hoping to get things moving before I started eating again. Still waiting. Until then I'm back on clears. [ more ]
mgmt10 Ha ha Holly. They did the same thing to me with the lasagna! Wth?? Problem was I, like an idiot, ate it. [ more ]
See all 17 replies...
J-Pouch ForumsHelp! Need advice now!
Remicade/Imuran
K Kerry062
jeane I know how difficult this must be for you as I am in a very similar predicament. I am going to discuss biologics with my GI this week. I imagine the ulcer may have been there awhile if it is that deep. I too have bleeding often and will be getting scoped again. If it were me I would go the biologic route. I know the side effects seem scary but so is major surgery again and Im not sure about you but Im willing to try anything to svoid the bag again. If they work and you have minimal side... [ more ]
Kerry062 Thank you for your response and story. Let me try to explain a little better. So they didn't actually diagnose Crohn's, other then there is no other explanation. They said if I would have developed these ulcers shortly after takedown, it would have been a different story. (And also I should mention that with my coloctomy removal they did find symptoms of what could have been Crohns.) They did biopsy the ulcers, but to determine if they were precancerous. The reason they are having me start... [ more ]
jeane Kerry, I am sorry to hear this. I wanted to share my situation as it is similar to yours, but appeared sooner after my takedown in May 2011. Maybe this will help you if you have more questions for your GI/surgeon before starting biologics. I have had rectal ulcers in the cuff for over a year and no one has diagnosed me with crohn's, although I am struggling to get in remission with the standard rectal suppositories with no luck. They suggested pouch advancement surgery for me. I also have a... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
VSL#3
K KiwiPoucher
wiggles i never realized a single strain could help with toleration but it makes sense. i think culturelle is a single strain and come to think of it i did seem to tolerate it better. [ more ]
TinCan I have not had any adverse reactions to VSL#3 myself, but know it can happen with most any probiotic. If uncertain, start at a low dose and see how things go. If you tolerate the initial dose, then try ramping up your intake. If you remain sensitive then perhaps an alternative probiotic would be worth a try. You may even want to try a single strain at a time. Natren, for example, makes three or four single strain probiotics - although they are equally if not more expensive than VSL#3. Until... [ more ]
See all 2 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Bo Shen found the fistula
N NJK
SandraD123 Yes I had a pouch "re-do" due to a long efferent limb. Dr. Remzi is excellent and the care at the CC is top notch!! I am very very happy with my result. It was a long road but most definitely worth it!! [ more ]
liz11 njk that is great news... well at least that the problem has been found so you can be treated. The thing about those CC docs is that really believe their patients. Dr. Shen and Dr. Remzi both listen and use all of their knowledge and Shen's "bag of tricks" find things and fix things that other docs at other facilities just dismiss. and dr. shen is ALWAYS late for his office appointments. I don't think I have ever seen him within a 3hour window of when my appt was scheduled. But it matters... [ more ]
jeane No I went in October. Wondering what issues you had. I'm dealing with chronic cuffitis not responsive to meds and a chronic structure at anastomoses site. I probably need pouch advancement surgery and will have dr Remzi do it. Dud he actually perform surgery on you? [ more ]
See all 5 replies...
J-Pouch ForumsPouchitis
Dieting and pouchitis
W wolfie
Lew Wolfie As weight watchers works on a point system you can eat most things but you have to be aware of your points allotment for the day so you can trade off. (Fruits and vegetables in general are considered free which helps you avoid being hungry). Sodium is less an issue for us UC sufferers - I have been told by doctors that I don't need to worry about it. The frozen dinners sure are easy especially at lunch but it's hard to find a lot with low points! I used to take a club soda (0), a... [ more ]
Jan Dollar Neither, just happenstance. I developed UC after we had been dating about a year, and he stuck with me anyway. That was when I was close to 16 years old. We were married at age 21 and he did not develop UC until he was about 45. He jokingly accused me of giving it to him. But, there might be something to it, if you buy the germ theory of a trigger, such as a slow virus or a bacteria that sets things in motion... But, the fact remains there was a genetic susceptibility. We didn't even know it... [ more ]
CTBarrister Some have reported that sugar and carbs worsen pouchitis but I have found diet to be irrelevant in managing pouchitis. By the ways, Jan, how did you end up married to a guy with UC? Was it a common interest in IBD that led you to meet him? Or did you serve as his nurse when he was hospitalized? Just curious. My now deceased great aunt was the head nurse at a local hospital here in CT and her husband was a former patient of hers who was hospitalized with gastrointestinal issues. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
pain medicine
S Stone
bootstrap All prescription narcotics/opiates (Norco, Tramadol, Morphine, Oxy, etc) are known to slow the bowels. Yes, it has had this effect on me back when I was taking it for UC pain and a bit after my surgeries, but it is NOT a good drug to rely on for this purpose as it is highly physically addictive. The last time I quit taking Norco, I had bad withdrawals including fever, chills, cold sweats, and headaches to the point where I had to go back on it and then slowly taper down off of it again. If... [ more ]
Av8erchic I took Norco after takedown for a couple of weeks on and off for pain. Didn't seem to help any to slow the bowels-but I am currently taking Lomotil and it's a lifesaver! [ more ]
Scott F In a sense that's what Lomotil is. Diphenoxylate is chemically related to the other opiates (morphine, codeine, etc.) but has more of a constipating property and much less pain control. Lomotil can control withdrawal symptoms for people addicted to opiates (though it would be silly to use it that way). [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
unhealed wound from jpouch excision
L liz11
Nat ❤️
liz11 Its been confirmed the plan is to I&D at next EUA and then inject doxycycline or glucose. 70%success rate. I imagine it would be repeat treatments. I have no worries about them trying any of it. But it sure would be a new thing if my body ever fell into the 70% success group! It usually manages to be in the 1% of failure group. chiro-I had no idea they ever kept the anus when removing a jpouch. I had never heard of that. Hope it continues to work out for you. And yes, isn't a great... [ more ]
chiromancer I am really sorry to hear you are still having problems. I didnt realize your wound went that far "up". I thought it was mainly the anal closure area. How long did you have your pouch before it was excised? Do they think the length of time the pouch is in place makes a difference in its difficulty of removal? I had mine removed mid Dec laprascopically, (disconnected and end ileo in July) there were a lot of adhesions but the surgeon(s) was very happy with the surgery (4 hrs). I have had very... [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
Did surgery help with Joint Pain from UC???
BD Blake D.
gleam I was thinking about my joint pain a few days ago. I haven't noticed any hip or knee pain since my Jpouch creation. I still have ankle pain but I attribute that more to skating injuries. So my answer is yes. However, would I go through with this procedure just to avoid joint pain? No way! [ more ]
CC Rocks I developed joint pain around the same time I was diagnosed with UC 24 years ago, was diagnosed with arthritis soon after. . During my J pouch surgeries I still had severe joint pain. It will be 3 years this October since my takedown and i still suffer from it. I had all my siurgeries at Cleveland Clinic and I am going to see Dr. Bunyard there in two weeks he is a rheumatologist. Everyone is different but my pain never went away after my surgeries. [ more ]
Scott F The cause of the joint pain has to be clarified, if possible. Colectomy isn't generally suggested for joint pain, though some folks here have seen improvement. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
3 blockages in 4 days...Codine?
skn69skn69
Jan Dollar Sure morphine and other opiates help, but if you get stopped by a measly 40mg of codiene, you certainly cannot take the stronger stuff. You might be able to tolerate tramadol, but it has similar side effects as the opiates, plus it can stimulate seizures if you take SSRIs or tricyclic antidepressants. You can try any of the NSAIDs and see how you do, but they all can potentially cause liver and or kidney inflammation (they definitely will work a LOT better than Tylenol for you, and it is... [ more ]
skn69 I gave in and called my GP in tears this morning. He will see me tomorrow to find a med that I can take that will not stop my pouch cold. He is also giving me a letter to a Rhumey and a run of 1 week prescription anti in flamatories...is there anything stronger than tylenol that does not stop intestinal motility? He is offering me anything at this point if I can take it? Do opiates or morphine help? Thanks for the suggestions Jan, I have a matress topper but not a memory foam one, will try... [ more ]
Jan Dollar One thing I found to literally save my butt was a memory foam mattress topper. We have a sleep number bed, but even that was not good enough for me to be comfortable through the night. The memory foam softened the surface, while still being supportive. Otherwise, every body part that rested on the mattress felt bruised after an hour or so, even while taking NSAIDs. I also use a small, firm pillow to support my low back when on my side. Hope the chiro helps. Jan [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Human Waste Transplant!
FM Former Member
Jan Dollar Not new at all, but not a common treatment. There have been numerous discussions here about it, but it was referred to as fecal transplant. Jan [ more ]
Pouchomarx This is not new, they have been doing this in other countries for bad cdiff infections and is now gaining steam in the US [ more ]
Rocket Justin, I've heard of it. In fact I even discussed this with a GI Nurtrionist but since I already had a pouch, I was not a candidate. However, in thinking back to my UC days, if a doctor told me this would cure my UC because there have been many documented cases, I would want the names of the doctors and patients and if it was all on the up and up, despite how disgusting this looks, yeah I would go for it. R [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
CBT for Irritable Pouch Syndrome
S Subzeromambo
Subzeromambo I am trying one more local GI and then off to Bo Shen. I am having a lot of malabsorption issues that I do not think are normal. Thank you for sharing your story. It gives me hope. [ more ]
liz11 How did they get to the IPS conclusion? Did they rule out all other pouch problems - pouchitis, mechanical problems with the pouch, ishemia, etc.. I firmly believe that not many colorectal surgeons or general GI docs really understand the full analysis and diagnosis of pouch problems. I went through 5months of $%&^ immediately after takedown when my surgeon threw me out of his care saying everything was anatomically correct and then my supposed guru local GI and "pouch expert" diagnosed... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Crohn's Treamtment with J-Pouch
G GKatzz
LisaT I have had my pouch for 17 years and about 3 1/2 years ago I started to have pain and other issues. I was on Entocort for 2 years with no improvement. I've had 4 Remicade infusions and I THINK it's working. You can go from Remicade to say Humira, but you can't go back once you've ceased to use it. [ more ]
GKatzz Thank you! That helps me a lot! Gary [ more ]
Jan Dollar I take Simponi, but I don't think it is approved for Crohn's (yet, but phase 3 trials indicated efficacy in UC). I like it because it is once monthly injection. Remicade is by IV infusion only, every 4-8 weeks. Also, it is mouse protein based, so more likely to cause allergic reactions and antibody formation (reducing effectiveness over time). Still, it has been around the longest, so has the most data. Humira is approved for Crohn's, but treatment is every other week, weekly for some (I had... [ more ]
See all 5 replies...
J-Pouch ForumsWomen's Health & Pregnancy
2nd IVF
MsSterlMsSterl
JillM Yea! Exciting. Good luck on Saturday! [ more ]
MsSterl Thanks Speech Path, I agree! This morning I had several follies around 17, a couple 18, a 19 and two in the 20's!!! Retrieval is Saturday morning! [ more ]
speech path Remember slow and steady wins the race! Great that estradiol keeps going up! Praying for great results! [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
i cant do this anymore. please help me.
W wiggles
Karbear I can still remember those hopeless days and nights. It's very hard when day after day you are experiencing discomfort and pain. It's hard to look just one day ahead let alone weeks, months, or even a year. My only suggestion is just because you have tried something once doesn't mean it isn't going to work for you in a couple of weeks. Keep revisiting some of the great tips you find on this site. Some may start to work after some time. Maybe, maybe not. My best tip is to take hot baths. It... [ more ]
wiggles thank you karbear. i want to be happy and start feeling better so badly but clearly i have a hard time communicating properly on here but i need you guys and im willing to do what it takes. [ more ]
Karbear wiggles, I don't get on much anymore, but tried to catch up on your posts. The beginning of my recovery from takedown was very slow with lots of bumps along the way. I had cuffitis, abscesses, fissures and pouchitis. Still today I suffer from chronic pouchitis and frequent abscesses. I can say it does get better, it just takes time. I noticed for me the hc suppositories constipated me. I also had a lot of problems passing stool with both pouchitis and cuffitis because of the inflammation. [ more ]
See all 39 replies...
J-Pouch ForumsGeneral Discussion
Out of the hospital but...
bootstrapbootstrap
mgmt10 Chocolate is the one thing that sends me to the bathroom more than usual. I will never give it up though! Glad you are feeling better. Hope all goes well with the ct scan. [ more ]
bootstrap Thank you for the support, Ladies & Gents. I'm actually feeling pretty good aside from the air still trapped in my abdomen, which is quite uncomfortable 24/7 - I guess that's kind of contradictory, huh? I will get to see at the CT in two days if the air has gone down at all. I did a little research on it and found out that although these things often resolve themselves in 6-12 days, it can sometimes take several weeks for all the air to absorb, so as long as the air pocket is getting... [ more ]
TE Marie Kudos for facing all of your problems head on and doing whatever you need to solve your problems. About going back to work in 3 weeks please don't push yourself too much when you go back. If you are able to go back please start out part-time. [ more ]
See all 7 replies...
J-Pouch ForumsPouchitis
Tapering Off Of Entocort a/k/a Budesonide
CTBarristerCTBarrister
CTBarrister I appreciate your responses. So far I have been on 6 mg since Monday and the only issues I have had is trouble sleeping the last few nights, which may not be related. The dull headachy sensation has not returned. I am to take 6 mg for 2 months, then go down to 3 mg. [ more ]
Scott F It may be useful to remember that the taper schedule can be adapted to your reaction (assuming you have sufficient medication). If you're not addressing some severe steroid issue, there's no harm in slowing down a taper if your body seems to need more time. Jan's point about giving the body time to start producing physiological doses is sound, but if you've been on steroids a long time your body may have an inflated notion of what constitutes physiological. [ more ]
CTBarrister Headaches are not common events for me, especially prolonged, dull headaches, so when I get them I take note and try to attribute causation. It really was not all that bad, but I feel fine today. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
upcoming takedown..help!! :)
F FrustratedButFighting
FrustratedButFighting Thank you all for your great tips! Hope everyone is having a good day God Bless! [ more ]
nocolon-2000 You're on the downhill side!!! Get some Calmoseptine. Hot water spray can be your friend as well. Rather than wiping, spray off then blot. Don't count bathroom visits. You will start out with a lot and it gets better over time. Chew, chew, chew! Careful with foods at first. Drink drink drink. When you pee, you will poop. When you poop, you will pee. Sit. I do remember right after my pouch took over from the ostomy, I would get killer pains in my pouch when things would "move in". Best way to... [ more ]
Manchester Congrats on your takedown. I went from UC diagnosis to all in one j-pouch inside 13 days so didn't have much time to get worried but just think how much of your life you will have back. Like I said I only had UC for 2 weeks but they were the worst 2 weeks of my life. I was in hospital for 10 weeks all in all but I wouldn't change it for the world. My pouch (Bigglesworth as I call him) is a joy to live with. I eat what I want and he empties everytime I BM. Everytime you get panicky just take... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Decided yesterday to have colectomy next week
P Pluot
TE Marie You sound great How crazy is it to schedule surgery and not have a room ready at the inn? Hopefully you'll have one soon. I think it's the first time I've ever seen anyone post from the recovery room! Sweet Dreams [ more ]
Pluot Yeah, I'd say it worked... with a VENGEANCE. It was actually only my second prep ever and I idiotically started drinking way too late. I almost wasn't able to leave the house on time in the morning. Oh well, that's all in the past now! [ more ]
Scott F Congrats, Liz! I guess the prep must have worked. ;-) After my surgery I always pushed the button until it stopped responding. That's how I knew it was time to ask for the dose to be increased. Pain is overrated. [ more ]
See all 36 replies...
J-Pouch ForumsGeneral Discussion
Flagyl- so gross tasting!!!
Uc-DanielleUc-Danielle
Uc-Danielle Liz it's been a week since my last EUA and he had to put another cutting seton in and I have to go back in 8 weeks I'm still sore and he described it as happy but not ecstatic lol so dr.remzi....the only good thing that came out of this was seeing dr.remzi and dr.messik I just love him haha such a school girl crush [ more ]
liz11 Yes, I had the same issues with flagyl in IV form. It would wake me up and I would "taste" it and get totally naseoaus. They had to discontinue it, because they figured out it was absolutely killing my ability to eat anything. The TPN doctors kept coming in and saying even though you are on TPN you still have to eat. And I just couldn't. Well finally one of the colorectal docs pulled the flagyl iv... and sure enough I could look at food again. [ more ]
Jan Dollar I get that funny metalic taste, but just try to ignore it best I can. I also think it is more than just contact with the tongue, because I could taste it even when I got it IV. I would be sleeping and would wake up when they started the drip, and told the nurse, "you're hanging the Flagyl now, right? Because, I can taste it..." But' for me the best way to deal with it is by putting something tasty in my mouth, like hard candies, mints, etc. Jan [ more ]
See all 17 replies...
J-Pouch ForumsHelp! Need advice now!
rectal bleeding-fissure or cuffitis?
J jeane
liz11 yup.. exactly.. ended up back being a surgical patient because I WAS NOT "anatomically correct" as previous surgeons had screwed up! [ more ]
Jan Dollar In surgeons' defense, their focus is surgery, not medical management, so I can understand a surgeon opting not to treat a medical problem. However, this does not mean they should not facilitate you getting the care you need! Of course, it seems that you wound up being a surgical patient after all, but only after failing medical options. This is why I am in favor of the coordinated clinic, where all specialties work in concert for you. My Kaiser system is similar to CC, with everything on one... [ more ]
jeane Wow..this is so sad Liz . I am so sorry for your pain. [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
gut friendly antidepressant?
W wiggles
suebear See, and I tolerated Celexa very well; I took it for 4 years and didn't have the symptoms you describe. Not all antidepressants treat all forms of depression. Some are tailored more for anxiety or sadness. Your doctor will prescribe the best drug to treat the symptoms you are exhibiting. If that drug negatively affects your output, try taking it with food. Sometimes we just have to make things work for us, even though it can be an inconvenience. Sue [ more ]
kathy smith Again, different antidepressants work differently for different people. I take generic Zoloft and it works very well. All you can do is give each a chance. If you notice a bit of discomfort when you start taking one, you could try to tough it out for a few days to see if it will settle in. The problem with starting and stopping antidepressants quickly is that many of them don't have the desired effect for up to 6 weeks. That's why it's very important to try to stay on one. Just because... [ more ]
Av8erchic I've taken both Wellbutrin and Prozac both (at different times...) after I'd been diagnosed with UC, but only had Prozac after my colectomy/ileo/pouch and haven't had any problems. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Way TOO MUCH GAS
R Rocket
Jan Dollar S. boulardii is different because it is a yeast, not bacteria. It is has been shown to be useful in treatment of infections of C. difficile, H. pylori, and travelers diarrhea. It is not included in VSL#3. Whether you need it or not, I have no idea. And sure, it could cause more gas. Again, varies by each individual. Here is a medical journal article that reviews it: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3296087/ Jan [ more ]
Rocket Hi Jan, One last question. I am currently taking VSL #3 packets a Probioctic which has 450 billion live bacteria. The S Boulardii, a Probioctic that has another 5 billion per capsule. I think if I remember correctly, and correct me if I am wrong, you take Align Probioctic. Does the S Boulardii have something additional to most of the other probioctics do not have? I am just concerned because I don't want to take something that may cause additional Gas. Before I order the Boulardii, I just... [ more ]
Rocket Jan, OK thankks for the Info. Am feeling better today. Rocket [ more ]
See all 28 replies...
J-Pouch ForumsGeneral Discussion
Chronic Active Enteritis
B Bish
Jan Dollar The problem is that "negative for Chron's" does not mean it isn't Crohn's. It just means that they cannot confirm Crohn's. Still, this could just be pouchitis. If you HAVE been taking NSAIDs more than just the occasional dose, this could be due to that, and it should resolve if you avoid NSAIDs. The treatment plan makes a lot of sense to me, particularly if antibiotics are not working for you. But, I can see your reservations about steroids, even at a small dose. So, I think discussing what... [ more ]
Bish The tests showed negative for crohn's. I called for my test results, they told me that they typically don't do follow up appts to go over test results. I think he wants to see how this works for 30 days, then we'll go from there. I will express my concerns about the steroids. Thank you for help! [ more ]
Jan Dollar This is sounding like Crohn's disease. It may not be it, but something similar, since Crohn's is often described as regional ileitis. Usually with Crohn's you need maintenance medication. Not necessarily steroids, but something. I can't believe that Dr. Shen would keep you on Entocort any longer than necessary. The good news is that Entocort is considered basically topical and poorly absorbed. What does Dr. Shen tell you about long term plans/goals. Generally, they say to avoid NSAIDs with... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Self Dilation Kit
V Valentine
Jan Dollar Which ever finger fits. You would not perforate, as pain would prevent you from going beyond your level of comfort. The idea is to dilate daily to prevent the stricture from reforming. Once it is there, you really do not want to be forcing anything in there. If you cannot get your smallest finger past the stricture and you are having symptoms, it is time to make another appointment. It is better for the doc to dilate again early than wait for it to become critical. At that time, you can... [ more ]
Jan Dollar I am sure it would be more fun, but you are correct that it would not help the anal stricture. Jan [ more ]
jeane Ooh my ignorance. Sorry. [ more ]
See all 8 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.

 

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

Online Now

  • Len78
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.
×