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J-Pouch ForumsHelp! Need advice now!
Post takedown SEVERE pain & weight loss
Z ZEWKREWMOM
mgmt10 He may have a stricture (scar tissue narrowing the anal passage). I developed one about a month after my takedown and I did a lot of straining and it was painful. Do you know if they checked him for one? If the narrowing isn't too far up it can be detected with a digital exam. I recommend him seeing his surgeon. Any issues so soon after surgery should be addressed by the surgeon. People in the ER probably wouldn't have a clue. Hope he gets it figured out soon. [ more ]
suebear His recovery, at this point, is not normal. He should not have to strain, and should not be in so much pain. He needs to see either his surgeon or a GI. This could be a combination of several things; cuffitis and possibly a stricture. Sue [ more ]
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J-Pouch ForumsHelp! Need advice now!
is this fact?
pouchingtonpouchington
Jan Dollar 1-2 cm is the normal length. Some people wind up with 10-20 cm, basically half their rectum or more, which can lead to some pretty bad proctitis, not to mention a hard to reach suture line. This is not typical. Jan [ more ]
pouchington bo shen said my cuff was between one and two cm... [ more ]
Jan Dollar I did fail to mention that if you have an unusually long rectal cuff, it would be possible that the suture line would be beyond the reach of a finger. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Digestive enzymes and gas
HockadooHockadoo
winter wish Hi I take digestive enzymes Creon, the pharmacist said that sometimes it takes a bit for your body to adapt i.e. for gas to reduce. I still had problems with diarrhoea and gas but now take rotating antibiotics with the creon and I am much better. Also creon can work better when taking a proton pump inhibitor. [ more ]
Rocket I found that if I have severe cramps that takine Activated Charcoal really helps. I also put a heating pad on my gut where the pain is and lay down for a bit. Rocket [ more ]
n/a If I'm going to having a gas-producing meal, I'll take a digestive enzyme with my first bite of food. Whole Foods makes one called Wholezyme which I've used; now I'm using Source Naturals Daily Essential Enzymes. They seem to help - usually. Beano doesn't do much for me, either. Hope you find relief. [ more ]
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J-Pouch ForumsHelp! Need advice now!
itchy,painful/burning sensation areas of my body
K kk
kk Thanks Jan. So far only been to general physicians. [ more ]
Jan Dollar A dermatologist is a good place to start, if only to rule out a primary dermatologic disease. Since you are prone to rashes/eruptions triggered by a variety of events, this could well be related to an autoimmune disorder, so in the end, you may need a rheumatologist to be able to sort this out (unless you have already gone down that road...). Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Surgery for prolapse
S Sandyj
kk So sorry to hear you are experiencing this. I know from experience what you are dealing with and it is not only painful but wears on ones nerves. Also keeps me confined to the bathroom anywhere from 10mins. to 45 mins. When I tell someone I am going to the bathroom to stop a movie/going somewhere (just a couple of examples) I say I do not know how long I will be b/c I never know till I go what issues I might have. I searched this site and doctors help. About 4yrs. ago while in bathroom I... [ more ]
liz11 tana can they not redo your jpouch? [ more ]
Tana I'm sorry that you are struggling with this. Apparently it is not an uncommon problem. I too have the same prolapse issue and was just released from Cleveland Clinic with a defication problem however I call it a blockage they call it constipation. The pain was horrible and I was there to do biofeedback and therapy while there they gave me a script for belladonna/opium suppository which I think made things motility wise worse. The doctors tell me that due to my pouch being so enlarged now and... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Muscle spasms
LC Lisa C
Former Member Could be Pouchitis or bacterial overgrowth. Are you running a fever? Are you passing gas? If its just muscle spams I've used Dicyclomine in the past it takes the edge off but won't solve it all. I could be something more like the start of One of the previous mentioned things. [ more ]
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J-Pouch ForumsHelp! Need advice now!
fissure ,now what!
R Rebe0505
Former Member I've used Nitroglycerin Ointment in the passed. Just don't try to light your farts on fire >.> here is a link I found on it. http://www.webmd.com/digestive...tment-topic-overview [ more ]
Rebe0505 today output seems more normal i think it had to do with me not eating foods that would cause any irritation thus for past few days ate limited things and no fruit.. but what is cream used for fissures? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Help - Bowel prep will send me to ER
Linda2Linda2
Jaypea I have had 5 different phone calls to the radiology department to try to explain my anatomy to them. I agree with trying to reach your surgeon, GI, or radiologist to figure this one out. You definitely do not need bowel prep. [ more ]
liz11 jan that was the funniest thing... "telling them you have a jpouch is probably as effective as telling them you have a raincoat" How true that is. Seems most medical professionals have no idea what a jpouch is? and linda I hope you didn't do that prep as you would probably need iv hydration if you did! [ more ]
Jan Dollar You did inform them that you had no colon, correct? Telling them you have a j-pouch is probably as effective as telling them you have a raincoat! Plus, you need to be sure that they are not just reading the instructions to you (as in: just the receptionist answering the phone). You need to be clear that you want the radiologist (MD) who will be interpreting the results to know you don't have a colon and what is the necessary prep in that situation. I've gone through this many times and the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
can someone explain what is an anal fissure?
R Rebe0505
Rebe0505 pluot thanks good advise..now to check my special diet i am on for avoiding bacteria overgrowth and refine it while i am trying to get past the fissure..if i am not mistaken for fruit the banana ,blueberries might be ok to eat?actually my diet out of scd book suggests things for easily digested foods will check it out again..will give up my beloved nuts for now in any form.. [ more ]
Pluot yes... it's basically like a paper cut in the anus, often it will be right on the edge of the inside/outside so if you "go exploring" with a hand mirror you can often see it. personally i had no need to see mine but some people are curious sitz baths are good for soothing them and encouraging healing as well. the main thing is to baby the area, eat foods that pass easily, nothing that will scratch on the way out (sorry, i think that includes almonds! nuts, seeds, etc), clean yourself gently... [ more ]
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J-Pouch ForumsHelp! Need advice now!
post blockage pain
Wanna Be HealthyWanna Be Healthy
Wanna Be Healthy Thank you so much, Jan. That all makes sense. I knew I could count on you. Ok, I'll take it easy, drink those fluids, I'm having baby food consistency food and wait it out. Thank again, [ more ]
Jan Dollar Seems pretty typical to me. Your gut has been very traumatized. The more severe the obstruction, the more severe the trauma is. The intestines get inflamed and swell with an obstruction, and it takes some time after the obstruction clears for the swelling to go down. Imagine a little ninja inside, kicking and punching his way through, leaving you battered and bruised inside. Just like getting a beating you can see, this takes some time to get better. The gas is because things were standing... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Paralytic Ileus (intestinal shock)
Khaos247Khaos247
Khaos247 Thanks for the information and insight. I really appreciate it. I am going to try to see the smaller problems that may cause this and hopefully that works. [ more ]
Jan Dollar Paralytic ileus is usually associated with the immediate post op period, not a decade later! That said, there is something similar called intestinal (or chronic) pseudo obstruction. It is essentially the same thing. It is pretty rare, but it sounds like what you are describing. It could be that there was nerve damage during your surgery, or just something that developed over time. http://digestive.niddk.nih.gov...s/pubs/intestinalpo/ Are you taking anything to slow the gut (like Imodium or... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blood, Blood and more Blood
Rene.maldonadoRene.maldonado
Jan Dollar Sounds rough. A few questions though. I know you had your colon removed, but do you have a j-pouch or do you still have your rectum? If you have your rectum still, then this can be proctitis, from UC in your rectum. If you have a j-pouch, bleeding from the small rim of retained rectal cuff, cuffitis, is also a common complication. This is probably more common than bleeding hemorrhoids. But hemorrhoids are not terribly uncommon either, especially if you have been straining. While you are... [ more ]
Scott F Blood can look like more than it is. It takes very little to make the water in the toilet quite pink, for example. The best way to get an objective understanding of how much blood is involved is with a CBC (complete blood count). If you're bleeding significantly every day you will become anemic (or already are). In addition to controlling the source of the bleeding, once it's identified for sure, taking iron supplements will help your body replace the lost red blood cells. Good luck! I can't... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I want to ask the right questions next week at UCSF GI
LS Long Slow
Long Slow Thanks again Jan You have given me some great background and I now I can ask some more informed questions..such as I was diagnosed with UC and had colon removed, then some disease comes back and moves up small intestine. Pathology does not show I have Crohns but I have something. What is it? UCSF will have lots of answers and recommendations. Peter [ more ]
Jan Dollar Was this your IBS or IBD? IBS is not an inflammatory disease (that is irritable bowel syndrome). I am even more confused, if they are calling it pouchitis just because the inflammation moved into your small intestine. Wouldn't that just make it ileitis? To be pouchitis, you would need to have a pouch (reservoir). The big question if this has moved into your small intestine, is whether this is Crohn's or UC. If there is a question of Crohn's, then that definitely will factor into whether a... [ more ]
Long Slow Thanks Jan you are awesome! I think they call it pouchitus because my IBS moved up my small intestine. The biopsy site is at 25 cm but they did not sample everywhere. These are great questions and thanks for reassuring me about the UCSF team. They did a great job with the liver transplant. I guess I will have to start looking for a racing suit that will accept a small swimming bag. Peter [ more ]
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J-Pouch ForumsHelp! Need advice now!
butt irritation extending up towards back
AJ Auntie JoJo
GinLyn Jan is probably right, but: if it recurs, clock it with where you are in your menstrual cycle. Seriously! I developed this symptom about 18 months ago; it happens every single month for 3 days about day 19 in my cycle. Then it disappears. Annoying, but not dangerous. Sudocreme helps. Gin [ more ]
Auntie JoJo Thank you. I am going to try the anti-fungals and metamucil. Very much appreciated. [ more ]
Jan Dollar Irritation that goes all the way up the butt crack is likely a fungus infection. Try some over the counter antifungal creams for a few weeks to see if that helps. Be sure to dry well after bathing, even use a hair dryer if necessary. If the OTC creams don't help, see your doctor for a prescription strength one. Oral probiotics may help get things back on track too. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Lateral internal sphincterotomy
B BarbC
BarbC Thanks Debra, In less than an hour, I received a message from a lady who had her LIS four days ago. She told me what was working for her (mainly liquid - pureed vegetables, fruit and vegetable smoothies, soups while avoiding red meat and items such as pizza). I appreciate your tip an that website. Barb [ more ]
BarbC Thanks Debra, I will take a look at that site this morning. Barb [ more ]
Debra I, too, suffer anal fissure. Here is the link to a fissure support group, and there are folks there that may have lots of good information for you: http://anal-fissure.org/ [ more ]
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J-Pouch ForumsHelp! Need advice now!
5 weeks out from reversal/takedown. Not going well
M MaureenD
MaureenD Thank you everyone for your replies to my request for help. Unfortunately I am still experiencing the same issues with frequency and incontinence. As I have had results from blood work, C-Reactive Protien, that would suggest that the inflammation/colitis that I was experiencing has resolved itself, I am afraid that perhaps my sphincter muscles are simply not going to cooperate. I am going to try some acupuncture and will continue with the Kegel expercises and hope for the best. [ more ]
n/a Hi Maureen, welcome to the bds. I'm one of those living with an RV fistula. I have had a seton in place for 1-1/2 yrs. now. This was a personal choice that I made after research and discussing surgical options with surgeon at Cleveland Clinic. In my case, once the fistula was "dealt" with, my BMs decreased considerably. Also, getting cuffitis and pouchitis under control made a huge difference. I'd advise not thinking colostomy at this point; continue your investigations and discussions with... [ more ]
chiromancer You have a colonic J pouch where the pouch is fashioned from the colon/large intestine as opposed to the vast majority of people here who have a J pouch fashioned from the small intestine typically after having their entire colon removed. I doubt your main problem is from lack of capacity in the J pouch as it would normally be much larger than the pouches most people have here. I would guess your issues are related to your radiation treatments both directly and indirectly. You may well have... [ more ]
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J-Pouch ForumsHelp! Need advice now!
HELP Blockage/Grape Juice Question
G grandmaof1
skn69 Gradma, Galbladder is no biggie anymore...most of us have had it as a seperate surgery, they don't like to contaminate one zone with ukky digestive bile from another...too risky. They did mine last year through laporoscopy and it was fine (except that we waited way too long to get it done, not advised)... You would know if you had had it because it is often after the age of 40 and you do get gastric distress, pain in your back in the upper-middle part, shoulder, in front under your ribs or... [ more ]
grandmaof1 Thank you so much. You have shed some light on some things I have not thought about. I have never had an NG tube. And I have had so many surgeries I have no idea if I have my gall bladder or not. But I honestly think I do. I know it is hard to believe I would not remember but God hasn't dealt me a great hand with my health. But I am still alive and I keep kicking everyday. He hasn't given up on me yet Thank Goodness cause neither have I. I will have to go through my notes and what my mom has... [ more ]
clz81 Yes, I also had the pain you are describing. For me, it was worse shortly after eating. As Sharon said, the pain could be gall bladder. In my case, we ruled that out and it was for sure a site of blockage. If I had to pinpoint it, it felt like where my stomach would empty into my small intestine. I had it for ~3 weeks ranging from painful during the blockage to mild while recovering. If you think the blockage has cleared, eat low fiber foods as not to further irritate the bowels. If you... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Sudden onset of severe acid reflux
DebraDebra
Jan Dollar Anybody's guess. Could be a new issue or an acute exacerbation of an old one. Jan [ more ]
Debra Thanks, Jan. I have been sleeping on a wedge for some time now, padded with pillows. The small meals ... already doing. I was wondering if this could be part of pancreas issues, or blockage issues, or just a stand-alone new issue. Took it real easy today, while all my meds were wearing off. Rice cereal and scrambled eggs . . . [ more ]
Jan Dollar In addition, I suggest small frequent meals. If you have night time reflux, elevating the head of your bed may help. Not just pillows under your head, but under your shoulders and trunk. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Problem solving for unpredictable nausea
HautshotHautshot
Hautshot I started this post and want to update you. I had two episodes of sudden sweating, nausea about three weeks apart. After an extensive work up by my GI with CT scan of the abdomen, multiple blood draws to test for mono, vit d deficiency, CMV, sed rate, we did not find a specific diagnosis. My primary doctor said it could have been the stomach flu which can get better and then get worse again. [ more ]
Goody2shoes I take cyclizine for nausea - zofran made me feel sick - especially the melts (yuk!!) [ more ]
Jan Dollar Yes, a partial obstruction would not cause vomiting, unless it was very high in the GI tract, like closer to your stomach. There are tests for SBIO, with the hydrogen breath test being most common. http://en.wikipedia.org/wiki/S...bacterial_overgrowth Partial obstructions can defy detection by imaging, and even early full obstructions, but this does not sound like it. Since treatment is antibiotics, you can ask for a trial course of Flagyl or Cipro (I recommend Flagyl to lower risk of C. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Back to surgeon to discuss surgical options
J jeane
TE Marie Good news Jeanne. I thought you already had some sort of bidet too. Good description JJA! I love the redneck joke. I call mine the Walmart version but need to switch to redneck and quit giving Walmart the credit! [ more ]
jeane You have sold me. Thank you. I'm going to look into it this week. Oddly enough the last two weeks have bed fine since starting oatmeal and blueberries daily. Really seems to help clear the pouch out. Even off antibiotics forctwo weeks which is a record for me. [ more ]
JJA Jeanne-have you tried a bidet? I had constant anal pain due to my incontinence, cuffitis, acids, irritation from using a cotton all in my anal canal to control the incontinence...whatever. Always at least a 4/10, sometimes worse-I just resigned myself to it. The bio bidet 3000 changed my life. I got it for $200 on ebay, and recently have seen it for $150, as the "head" on mine recently won't stay on, and is currently duct taped on (and yes, every time I see it I think, "If your bidet is held... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Help for anal Fistula diagnosis
J jeane
JJA I did not have anal pain with my anal fistula. My main symptom was pain on my left buttock, near what I refer to as my "sit bones"-although nothing visible to the naked eye, any pressure in that area felt like pushing on a bruise. After a few failed courses of antibiotics, a general surgeon did the traditional "filet you open" fistula surgery. My sphincter and continence was damaged. Less invasive treatments should have been tried first. Research shows (now I know) that we lose about 50% of... [ more ]
clouseau Mine is a RV fistula and Dr Shen found it during an exam and then confirmed with an MRI. Occasionally there is leakage from rectum but it is not frequent.no other symptoms. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Metamucil meltdown
HockadooHockadoo
RLC Only one wafer for me...two was way too much and a banana a day or greek yogurt helps me to thicken. Roberta UC 2007 davinci proc. w/j pouch to ileostomy 2/29/2012 takedown 4/30/2012 [ more ]
GinLyn I agree, it may have been too much at one time; everyone is different. Metamucil only once a day works best for me, either one serving of biscuits or one cup (dissolved powder -- if I take it with too much liquid it makes things worse). Granola is the best thickener for me, but also increases gas. Mostly I rely on a banana a day. Gin [ more ]
AllyKat The sane thing happens to me and I'm 14 years out! [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch Failure, Question About Permanent Ileostomy
RJ Russell J
Rainstone33 I just had my j pouch removed and a perm ant ileostomy put in. On nov. 13,2013...it was the best decision I have made..I am 32 now and was able to have two children before my crohns got out of control. [ more ]
Tana Dr.Bo Shen at CCF did a dilation of stricture and pouch for me 2 yrs ago. Maybe they can do that for you? Best of luck. 3stage Jpouch 1992 facing a redo myself for twisted pouch and pelvic floor problems, herniated pouch misdiagnosed have CD instead [ more ]
bluemusic4us It's been two years since my jpouch surgery. There was a sinus leak and I've been unable to have the take down. Saw a specialist that said he could do a surgery that should allow for takedown. But there are risks, etc. So I have not done that and may not. My life has been so much better in the last two years. The ileostomy is a hassle sometimes, but nothing like what life was like before. All the docs say that I can live with the ileostomy as is and no other surgeries are required. It's... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need advice regarding surgery
S Solomin
BillV I have an excellent GP and a GI who are fully informed about my BCIR and can deal with most medical problems I might encounter with it. If something unusual developed, Dr. Rehnke is just a phone call away. Valuable information about dealing with these problems is contained on the Quality Life Association web page: www.qla-ostomy.org (Medical Information tab). You are wise in doing more research and consulting with your doctors before proceeding with further treatment or surgery. [ more ]
RickIe Thanks.First I would like to discuss it with my doctors and do some research. Do you live near a DR. who can take care of you if you have a problem? Rickie [ more ]
BillV Rickie, the BCIR is done by Dr. Ernest Rehnke at Palms of Pasadena Hospital in St. Petersburg, FL. I had that surgery in April, 2013 and have had very good results. If you would like to talk with me about it, please send me a PM with your contact information. Bill [ more ]
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J-Pouch ForumsHelp! Need advice now!
Please, what does this mean?
B beckysmom
beckysmom Happy New Year Jan! Thank you for responding! [ more ]
Jan Dollar Yes, metaplasia and hyperplasia are typical cellular changes in response to inflammation. All j-pouches have this to some degree because of the use of ileal tissue as a reservoir (the mucosa is adapting to the fecal stasis). Jan [ more ]
beckysmom I think so, Thank you. Well, my daughter still has speak with her surgeon but the on call dr said they see those results often and it is just indicating inflammation. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stomach Pain - Hard to breathe in deep
F feirs1
kta I am sorry you and your son are going thru this. As far as diet goes, it took my pouch a long time to adjust to fruits and veggies. For me, starting out slowly and adding items one at a time in small quantities was the key. Hopefully, this will be a passing thing for him. [ more ]
TE Marie Have you tried to make fruit smoothies with a protein mix for your son? I make one once a day with frozen fruit and stick in a carrot or fresh spinach too. I always include a banana. I use PlantFusion a plant based protein powder but there are many other's out there. There are others that make smoothies out of veggies but I'm not very experienced with those... I hope he's feeling better real soon [ more ]
Lesandiego I had pancreatitis prior to my J-pouch. It was a side-effect of the drug Lialda that I was taking to manage my chronic proctitis. Spent 3 days in hospital and liquid diet for a week. After that, I never had a problem again or restricted my diet. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Not Sure What is Going On
C ChicagoDrew
feirs1 What have you tried so far? Are you taking any medications? Have you tried eating just rice or something that is slow digesting? Any chance you could have pouchitis? Probably makes sense to reach out to your doctor especially if this has never happened to you before. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Back to Ileostomy again?? To be or not to be???
T Tana
Tana Dani, just wanted to know if I may the circumstances causing you to go back to ileostomy. It may help us figure it out? Apparently I have paradoxical non relaxing puborectalis and in Manomotry studies I flunked two tests. I also have an angulation of intestine and they said my pouch is angulated??? Not sure what all this mean but the prolapse and blockage of80% is my biggest concern. What's your diagnosis [ more ]
Tana Thank you all for your advice and experiences. It's nice to know you're not a freak because you have half your guts missing:-) Well I am feeling better however being off the Remicade for preop prep has been difficult. All my joints and muscles hurt so bad I can barely get out of bed other than to run to bathroom with diarrhea. I have my great days and more bad days but we all do I guess with Crohn's. After 20 years of jpouch I think it's time for us to part ways.. I read that CCF did a bowel... [ more ]
SueH I didn't want to read and not leave you with positive thoughts and prayers for your decisions. One thing I will say: permenant ileostomy and stoma are a totally different animal to a temporary one. Through my nursing I have seen lots of perm and temp and the perm ones temped to be so better behaved and easier to manage in general. I know lots of people who chose to lose their pouch and are so glad and are now living healthy active lives. I wish you both the very best of luck. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch and acute pancreatitis
F feirs1
JeffDC For the first two weeks out of the hospital, my diet was low fiber, low residue. Just mild stuff. Fruits and veggies were a no no if they were fresh (bananas were ok). If the fruits were canned and the veggies steamed, I could do that. The rule of thumb were that if the veggie could be cut with a fork, it was ok. Your son may have had the colitis worse than I did; my diet was not too restrictive. Try this link: http://www.healthcentral.com/d...c/92/12690/soft-diet [ more ]
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J-Pouch ForumsHelp! Need advice now!
2 weeks after takedown - still too many BMs
B bpp
ISeeUC My surgeon wouldn't let me leave the hospital until we got my BMs down to fewer than 15 per day. You're losing sleep and likely a lot of fluids as well. I suggest calling your surgeon to see whether he can help you now rather than waiting it out. Good luck! [ more ]
mgmt10 Yeah, it's a bummer to say it but 15+ times a day is normal so soon after surgery. It gets better I promise. I know the lack of sleep thing is hard but you should start seeing improvement as the weeks pass. My surgeon warned me that it's crazy for a bit after takedown. A lot of surgeons fail to tell their patients as to what to expect immediately post take down. Hang in there! [ more ]
bpp Thanks for the replies. I am just glad that I am not alone and it seems to be normal to go lots of times post takedown. My BMs range from 15-25 per day but I am more concerned about the lack of sleep. I will see how it goes for next few weeks and then speak to my surgeon on my follow up appointment. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bowel adhesions won't go!
D D.Hunter
TE Marie No matter what the problem is something is wrong. Please see your doctor. You could have an obstruction, something twisted or I don't know what wrong. Could you please describe your pain and maybe someone will have advice. [ more ]
Scott F The adhesions themselves don't come and go. They have a tendency to form after surgery and stick around. They are essentially attachments between the bowel wall and the abdominal wall (or between separate sections of bowel). Normally the bowel should slide around freely, but adhesions can cause a section to twist or get kinked, which can pull or block the free flow of the contents. [ more ]
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J-Pouch ForumsHelp! Need advice now!
SIBO question
AllyKatAllyKat
AllyKat Fecal transplant was mentioned. Ugg! I started trying cutting out sugar and carbs, maybe I'm at 75 percent and added homemade kifer but...I'm losing weight which I can't afford to lose. I switched off xifaxan to pentasa for the time being. With all these holiday parties diet is hard. [ more ]
AllyKat CT, that is sort of what I have! Pooling at the dome or top of the pouch. Moderate inflammation. My GI said this is very common. [ more ]
Rebe0505 xifaxin did not work for me and sibo is present diagnosis..et barrister may have explained it best..could be both but diet could be a step in reducing your worst issues..go for it..see what happens few of us who are going for it see real improvement.. [ more ]
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J-Pouch ForumsHelp! Need advice now!
something never experienced in 13 years! having trouble "going"
Chele Lee WVChele Lee WV
AllyKat I agree you should have this checked out since u r prone to blockages. In the meantime as a long time blockage sufferer I would apply heat and drink, drink, drink. This usually gets things right by me and I avoid the ER. I had surgery 4 years ago and that has helped a lot. I still get some small ones every so often. Hope u feel better, I've spent many nights in the ER and hospital since 2000 so I know how u feel. [ more ]
Scott F I think you need someone to take a look, ideally someone who knows how to spell "J-pouch." Maybe a stricture? [ more ]
Chele Lee WV Thanks for your response...same here. Feels like there is gas trapped inside behind the stool. Anytime I lay down I can feel and hear it inside like its moving around. Ive had blockages before and have been hospitalized over and over. This is different though and a bit scary. Not sure if I should go to the hospital or try to treat it myself with some of the other posts ive read on here by using mirilax and colase and grape juice. Dairy is a no no for me as well, but usually causes gas so id... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Abdominal pain,gas and smell burps!
L LilMoe03
LilMoe03 He just woke up and he says his pain is gone and he is hungry and wanna eat . I made rice and steak today and he is eating it. Didnt give him metamucil, just his other regular meds. Lets see he uses the bathroom. His diarrhea seem to have went away. Just had a small accident while sleeping and was goey not watery. And no gas since he got up.or burps. If not tomm monday i call the dr . Thanks. [ more ]
beucfree Sounds like partial blockage to me. I used to get the very same symptoms, if it last longer, you may have to take him to ER and start IV to avoid dehydration. [ more ]
vanessavy what is his diet like? Could be SIBO (bacteria overgrowth), most likely not pouchitis since us with FAP don't seem to get it, a 1% chance of getting it so SIBO could be it. That is controlled by diet and an antibiotic. If nothing is coming out it could be a blockage, adhesions tend to do that. But I would call your doctor/surgeon since we can't diagnose him. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Natural ways to control diarrhea
T Taradars
Taradars Thnks Scott. Yea I could take whole package of Imodium and it wouldn't phase me. Go figure. Lomotil does work but I am wanting to get away from all the prescriptions. So far last two days of trying the pectin and being careful on what I eat have been doing ok. :-) hopefully it'll continue! [ more ]
Scott F If Imodium doesn't work then your dose may be too low, or you might get better results from Lomotil (I do). Not natural, though... [ more ]
Taradars Thanks guys. I am trying a pectin subst for now. Imodium In the past was liking taking tic tacs for me. :-(. May give it another try though. the oatmeal cookies are Probaly high in soluble fiber which helps bulk up your waste. [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
pouch advancement!??
lovedby2lovedby2
lovedby2 This is all good information and I will be bringing this up to my GI and the Dr. That he has referred me too. I'm not going with my original surgeon, as you mentioned, because i want someone who has jpouch experience. I'm in pain everyday and can't stand more than 30-45 minutes at a time. I need help and I hope to find help with this new Dr. [ more ]
AllyKat Oh no you don't need your pouch remove, just taken apart, the anal area stripped and hand sewn back. I had what you had 14 years ago. The pain was so bad I would cry. Just make sure you find a doctor that has done a lot of these. Your surgeon may not have ever done any that is why he is taking removal and makng a new one. One of the complications is anal in continence so u want an experienced surgeon. Probably at a large teaching hospital. I did not have any problems after this surgery and... [ more ]
TE Marie I also got over the c.diff which was bad because I'd waited until my year to have anything looked at, that took me Flagyl off an on 8 months. I didn't get my IPS under control until a few months ago. It baffles me why I need to go on antibiotics sometimes to get it under control but I do. Once I started using prescription Imodium, Loperamide, like my GI told me to and changed my diet, on my own, to a softer one with less red meat I've been doing better. It's just been a 3 year observation of... [ more ]
See all 15 replies...
J-Pouch ForumsHelp! Need advice now!
abdominal and now pelvic pain
B beckysmom
beckysmom I think you are in good hands and sounds like a good plan. When I took my daughter years ago to Shen he said he dilates a patient of his stricture every 3 months. Hope it is just a process of healing with my daughter and she will continue to improve. Hope 2014 is good for everyone on the site! [ more ]
13 Years & Counting That's good news that all looks fine! Of course doesn't answer why or what caused the pain which I imagine is frustrating. I feel pretty good, but then again, I've not felt sick except for the obstructions. The pain in my hip & lower back at times is awful, but I don't allow it to hold me back. Decided to stay w/ Drs. Chessin & Legnani...didn't seek any other opinions. Scheduled for dilation 1/13 at Mt. Sinai. Hopefully they're correct & the stricture can be opened. Thank you for... [ more ]
beckysmom How thoughtful! Thank you. Yes, she had a scope with her surgeon and he said all looks really good! We didn't speak with him, just the resident, since her surgeon went right into a big surgery. She has an email into him with a few questions, why still pain etc. But so far it's good news! How have you been? [ more ]
See all 19 replies...
J-Pouch ForumsHelp! Need advice now!
Seeking advice, not sure what to do.
G Gibs
ljk I just wanted others opinions on the situation, thats all. Sometimes I feel as if we (jpouchers) sometimes know more than the M.D., Because we are the ones living with it and going through different experiences with it as well. Yes the M.D. have the knowledge of what to advice, but until you actually walk in someones shoes that has a Jpouch, then you really have no idea how that person is feeling. I know for me if someone were to ask something that I have personally dealt with and someone... [ more ]
ljk ok will do, thank you and God bless! LJK [ more ]
Scott F ljk, you're writing as though you might need an emergency department instead of a support forum. We're all kind of far away from you, so other than sharing our experiences there are only very limited ways we can help. Good luck, and I suggest you get medical attention if you are in such severe distress. [ more ]
See all 13 replies...
J-Pouch ForumsHelp! Need advice now!
Total Proctocolectomy or Not?
U UCinCharleston
TE Marie You mention doctors so I'm assuming you have had more than one opinion. Believe me your colon is not worth keeping with high cancer risk. I had my colon years before being finally diagnosed. When my final flare from hell wouldn't go away and I had UC and diverticulitis pan colon it had to go. I decided against trying biologics because of the risks, my age and colon cancer risk. Most of the people posting on this site are having problems. 95% of those with j-pouches are doing fine and aren't... [ more ]
Mike H With my expereince the J Pouch is a no brainer. I do understand that some people have no option but to have the bag for life but I had one for 9 months until my reversal surgery and it was the worse thing. The words "you get used to it" are just something to make you feel better about it. Sure you learn to deal with it but not get used to it. I have totally forgot about my J Pouch unless someone asks me about it or the topic comes up. Trust me if I am ever told I will have to go back to the... [ more ]
chiromancer An alternative might be frequent colonoscopy. Its not fool proof but something to consider if there was no other indication of cancer. If you have pan colitis your chances of cancer increase dramatically after about 20 years. [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
May need urgent colectomy in Winston Salem NC, need advice
LH Liz' husband
Sarah.Rae I have had experience with wake forest medical team and they are amazing. My doctor was Dr. Turner, he should still be there if not just find out who took over his position but they work with you. I had my colon removed, temp ileostomy and now have a j-pouch and he is the one who did them all, caring and understanding. I would recommend him anytime. -Sarah Rae [ more ]
BecMom My daughter had surgery at Duke too and I would recommend going there. They did her father's surgery in 1983 and so were one of the pioneers in the field. [ more ]
Troy I don't have any experience with wake forest, however, when i lived in Danville Va, I was referred to Duke University Hospital. I live in Richmond Va now and have a J pouch with problems. My GI in Richmond referred me to them as well. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Can't pee!
EricEric
Jan Dollar I agree, this sounds like a urinary tract infection or trauma or both. Don't try to see your doc, see your doc, or at least get a phone consult going. Jan [ more ]
Spooky Eric, were you catheterized post-op? I realize the anatomy is different, but I had a heck of a time peeing initially after the catheter came out. Catheters can cause some local trauma depending how they are positioned and/or inserted/removed. You can also pick up a pretty nasty bladder infection from the cath, especially if it was in for more than 48 hours; if this is an infection, maybe you need a longer course of cipro or even a different antibiotic to clear this up. Hope you can get this... [ more ]
Eric Ops! sorry guys! I posted everything on FB, guess I forgot to post it here. Three weeks ago, I had another surgery to remove the adhesions constricting my bowel causing blockages and nausea, and he had to fix two serosal tears. I've had so many surgeries, I'm actually forgetting to tell people, I just hope it's that last for a little while at least. The surgery itself was fine, only a short one, just 3.5 hours, the recovery has been the difficult part. With each additional surgery, it takes... [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Unknown pain
BL Bunny love
TE Marie Do they know what is causing the blood in her stools? It doesn't sound like she has cuffitis but could she have any fistulas? If not visible during scopes they might need to do an MRI to find out what is going on. Hopefully someone else that has had similar symptoms will post. Also is there any other kinds of probiotic she can take, like Align? [ more ]
Scott F Gas can certainly act that way, with the pain disappearing as quickly as it arrived. Is the gas showing up in her bowel movements? It would be fairly obvious. If it is gas, then small intestinal bacterial overgrowth (SIBO) is a possibility. Another possibility is that some antibiotics can cause bellyaches - what is she on? [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Help please! stool is "impacted"
dgtracydgtracy
dgtracy I did get admitted on Friday morning at like 4am. They tried me on an enema with phosphorus in it and some other stuff. Something from fleetwood. Also tried me on 1 Dulcolax suppository that didn't help, then tried another suppository that had opium and something 31st in, was meant to relax bowels but nothing came of that. Fast foward to Saturday about 12 clock my surgeon showed up and they did a flex scope to go in and remove the impaction. Surgeon said it was probably seaweed from my sushi... [ more ]
skn69 Favorite cures? Mineral oil, warm water enemas, prune juice (not in enema format), large quantities of hot tea and warm lemonaide... Push fluids....lots of them, it tends to help but head for the ER if there is vomiting, sudden pain or fever. Sharon [ more ]
Lesandiego Have you been admitted? I hope you find answers soon. Keep us posted. [ more ]
See all 5 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

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

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