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J-Pouch ForumsHelp! Need advice now!
Just swallowed a whole almond
J Jpouch8888
Jpouch8888 All turned out ok! :-) [ more ]
CTBarrister I am guessing an almond is only slightly larger or perhaps even similarly sized to the capsules one is asked to swallow for the capsule endoscopy. I actually refused a capsule endoscopy that was recommended in 2007 because I looked at the pill and thought NO WAY am I getting that sucker down without choking. I was able to observe the pill because my father's friend was, coincidentally, an investor in the company that makes them and when my father discussed with him that I might go for the... [ more ]
Spooky Unless you have a known stricture, it's not likely that a single almond will cause any significant problem. If you'd swallowed several, that might have been more of a concern, but I wouldn't worry about just one. You may feel it when it passes, though, as it will be larger and harder than what you would normally pass in your stool. BTW, I see your post is a couple of days old. Did it ever make it through? EDIT - swallowing an almond with a loop ileo may be a little trickier. This would... [ more ]
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J-Pouch ForumsHelp! Need advice now!
dilation with sedation and now i cant feel my rectum multiple accidents
dgtracydgtracy
CeeeeCeeee I was going to say that I had some minor surgery on Friday and was so thrilled that I experienced no pain whatsoever for more than 24 hours. Thought I was out of the woods! NOT! The anesthesia wore off and the discomfort (pain) set in! Fortunately, taking Tylenol every four hours for a couple of days took care of it. Interesting stuff they are using these days for local anesthesia! [ more ]
dgtracy Well my father recorded the conversation with my surgeon after the procedure was over. In the recording she says that she used a new local anesthetic that will last several days. [ more ]
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J-Pouch ForumsGeneral Discussion
Adhesion removal 1/29/15
jipalmerjipalmer
GraceB HI Sharon I am sorry to hear that you have problems again. Hoping you have a quick recovery but than again do we ever recover from this awful disease . I know that you have been dealing with this for a very long time. I always read every ones post and there are so many that have problems. Wishing you well and all the others Grace [ more ]
jipalmer Thank you all so much for your replies. It makes me feel like I'm not in this alone. These are great suggestions...I cut out milk today and had some ginger tea. I felt better than I did yesterday so I guess I really do just need to take it one day at a time. Any suggestions for non-dairy soft foods? My husband found dairy free chocolate ensure which actually tastes pretty good and some dairy free icecream/yogurt. I've got soups too. -Jill [ more ]
skn69 I do have a lot of different ginger products too...candied ginger and ginger in vinager (like for sushi) that I eat with rice. It helps my k pouch to function properly (keeps things flowing and reduces the gas/cramping). Right now I am eating tons of 'hot' foods like Indian curries...no idea why but I crave rice and curry (very weird for me) but my gut appoves the mixture. Keep up the fluid intake, it helps with the swelling and healing. Sharon ps. Alley, yes, surgery again..7 weeks out and... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cramping within minutes of eating
T tulsamom
tulsamom Thanks. I'll do some reading on that. I had IBS a few years before I got UC after a serious bout of C. Diff. It was bad for a while and then just sort of went away, I think. It was the early 90's and it's a little fuzzy for me now. [ more ]
TE Marie In addition to what Jan suggested you might want to google IPS. That's what the official wording is for it after we get pouches. There's one of Dr. Shen's, and others, studies that discusses using antibiotics for IPS treatment. It's been the same treatment as for pouchitis in my case. You might want to consider a c.diff infection too. I had it before and after my colon was removed. Cramping and watery BM's are symptoms for it too. Lopermide, prescription Imodium, and/or Metamucil (I use... [ more ]
tulsamom I'm so glad you said that because when I read about IBS it doesn't seem to be shortly after eating. I will do a real bowel rest like my surgeon recommends and give it a few days. Then if it's not better I'll call him. I don't feel hopeless now. Thank you, Jan. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Sore and painfull
TH Tom Havenner
jd9998 It sounds like you have a lot going on Tom, and I hope you start feeling better soon. I am curious about the rash, if this is caused by moisture. Often when using a lot of rectal medication, we leave the outside of our rectum moist. This will soon lead to a nasty rash. I suggest that you use some baby powder on the outside of the anus. The drier you can keep that area, the less chance of you getting a rash. This is assuming that it is a normal type of rash. If it is something more... [ more ]
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J-Pouch ForumsGeneral Discussion
Straining
slightly_creativeslightly_creative
Deanna6 I am about 3 1/2 months after takedown and went straight from too many bm's being out on cipro and that constipating me and having the issue you guys have talked about with the pebble like bm's. I did some reading and thought I would try the Metamucil. I started using twice a day and have now moved to using three times a day with meals and it has helped tremendously. [ more ]
Thanh Originally Posted by asd (Guest): I suggest to all those who have difficulty emptying the pouch to try using a catheter. Have been doing it for the last 3 months and it's revolutionized my life (in a positive way) ! Look for the thread "self-catheterization" on the forum for details about how to do it Minded read more pls j-pouch.org thanks guys [ more ]
Mysticobra Hello. I was told and mentioned in other posts that I could not because my surgeon said no. Well... The last time I went in... Three weeks ago I think... Maybe two. Memory is shot. She said I could either..... Catheter or enema. Whew. I have not tried either yet. I have no problem getting rid of anything this morning. But I will be doing it in the future. The reason she said I could do it now is that she felt confident I would not damage anything as everything is healed so well. I waited... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Want J-pouch removed
TL T. L.
AllyKat PS Didnt see your post about adhesions. I had the surgery, took 6 months and lots of tests to convince my surgeon to do it. I literally could not eat, it got to that point. Yes, non stop gas can be a cause. Your system trying to push things thru. Although I still on occasion have problems they r no where like they were before. I had this surgery 4 years ago. You need to either push your surgeon in this matter or find someone else. In the meantime, use a heating pad. It should help. [ more ]
AllyKat I've been trying to have my pouch out for 14 years. They keep trying more things. Sometimes they work, sometimes they make me more miserable. Good luck trying to get it removed. I live in fear of what will happen to me when this med stops working. I guess I could Dr shop but if and when the time comes these r my doctors who know my history and I feel comfortable with them. [ more ]
ElmerFudd Just my opinion - because I know that adhesion lysis surgery can create more adhesions - but IMO it is totally worth a try to go through laproscopic adhesion removal surgery. If that is the cause of your issues, you will know shortly after it is done. Better than doing nothing and not trying. I, and several others, have had successful adhesion lysis procedures done. Was getting a blockage every few months in my first year. Since then - no complete blockages, very few what seem to be partial... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Ouch!
S sally85
rachelraven I had that issue after my first surgery. It was pretty painful. I had to have the nasogastric tube placed again, for a few days. Things started up about 5-6 days post op. Intestines hate being touched, and yep, often go "on strike" for a bit. [ more ]
TE Marie Welcome to the j-pouch club Sally Urinating was my biggest problem after surgery. I thought about that when you wrote about your tummy pain. It's bad enough to have the pain from surgery and adding pent up gas and fluid makes everything worse. Hopefully your new plumbing system will wake up soon. Walking isn't too much fun at first but the more you walk the better for your recovery. [ more ]
Scott F It's common for the intestines to go on strike for a while after surgery. It's called a post-operative ileus. It's miserable, but you should be fine. They probably won't discharge you until there's evidence that your intestines are moving, since you might need a naso-gastric tube if things get backed up. Mine lasted 10 days... [ more ]
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J-Pouch ForumsPouchitis
Continued disability review
M Msmith425
TE Marie Sorry, I don't understand your question. When did they say your claim would be reviewed as you were approved? My approval letter said it would be reviewed in 5-7 years. According to the pamphlet sent with the letter a 5-7 year review means they felt my disability was not expected to improve. I don't remember the exact times and reasons for review timing but I think one could be coming up for review at around 18 months and another 3 years. Those with shorter review times were more likely to... [ more ]
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J-Pouch ForumsPouchitis
Low grade?
W winnie
Jan Dollar It is unclear to me what this means, if anything. All pouches have some level of minor inflammmation, but this does not mean it is pouchitis. a pouchitis diagnosis needs to have some level of clinical symptoms to be called pouchitis, or at least a significant level of inflammation to warrant treatment (some people can have fairly severe pouchitis without symptoms, or at leadt they don't think they have symptoms). The bottom line is whether or not your doc thinks this is something that needs... [ more ]
Scott F I think it doesn't mean very much for you. A little bit of inflammation isn't that surprising, and it doesn't matter if you're feeling well. [ more ]
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J-Pouch ForumsHelp! Need advice now!
rectal pain
P pouchE
TE Marie I take Norco (hydrocodone/tylenol) daily for abdominal pain and more doses when having pouch pain. Take Care [ more ]
Yukon traveller It has been a year since my surgery and experience this on a daily basis. It has not gotten any easier to deal with and have had no choice but to be using percocete to deal with this. I have to use calmoseptine after every bowel movement otherwise i can be found dancing around the bathroom. I would also appreciate any feed back on the aformentioned post. [ more ]
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J-Pouch ForumsGeneral Discussion
Jan- Entyvio question
H hattie
Jan Dollar For me, part of it is convenience. Self injection avoids the inconvenience and time waste of an office visit and time it takes to infuse. With self injection, you inject at home at your convenience. I've been on biologics for ten years and that would be a lot of office visits and time sitting there! And, yes, giving your veins a rest is a good thing too. Not to mention that it is cheaper for you (no office copay) and for your insurance company. I am always for the most cost effective... [ more ]
hattie Jan thank you so much for your response. Just 2 few short related questions. Why do you suggest opting for medication such as humira that I can inject myself rather than biologic infusions... is it because they are safer or is it a matter of convenience or expense or efficacy of the particular drugs involved? (Also pertinent is the fact that my veins are extremely uncooperative and usually require the anthesiologist to start the IV for pouchoscopies after 4 or so attempts by the tech or... [ more ]
Jan Dollar From what I was able to glean from the literature, Entyvio is different than either steroids or biologics. The end result is similar, with a blocked inflammatory process. Steroids work all over the body in a more global sense and are damaging to your organs, eyes, etc. biologics mostly block TNF-alpha molecules from entering the inflammatory cascade. Entyvio blocks white blood cells from entering the gut and participating in the inflammatory response. My first question is why not Remicade,... [ more ]
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J-Pouch ForumsGeneral Discussion
ivig intravenous immunoglobulin update
EndiEndi
Endi I've now been going every 4 weeks since September. I am still doing well. The Crohns and Pouchitis are still both under control! I hope this info has maybe helped someone out there :-) [ more ]
Endi Yes, every two weeks indefinitely. I go for my next infusion Monday. It takes about 4 hours. The first few days after the infusion, I feel a slightly euphoric energy. I don't know how long I will need to do this , but I don't mind going every two weeks for the time being. I have been advised to drink a lot of water the day before, the day of, and the day after the infusion. It does make your blood slightly thicker. I've read that it might not be a good option for individuals with blood... [ more ]
boy's mom Yes, thanks for update. How long will you be getting shots every two weeks? Is that indefinite? Thanks. [ more ]
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J-Pouch ForumsGeneral Discussion
Other surgery
G Gumnut
Gumnut Thanks Ladies - all your replies are much appreciated . . . I like the Jewish Proverb - in amongst the seriousness of it all though I did have a smile as he has also had both his rotator cuffs done also - but with lots of effort, his shoulders are still quite strong ( and mine and the family's are here to hold him up when needed - he's 72 this year My very best wishes to you all in your lives and with your families also - even though we don't know each other, there is a bond between us all. [ more ]
Gumnut ❤️
rachelraven Foot surgery, no pouch issues. Wisdom teeth removal caused no issue, either. C-section and then ovarian cyst surgery, both times took a couple days to get the pouch going again. It's more likely to have gastro issues when they're messing around in your abdomen vs say, a foot surgery, however, opiate pain meds can slow things down, too. Bowels hate to be touched, and can get sluggish after those kinds of surgery. And like Sharon said, general anesthesia is also often worse on them, too. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Loss of elasticity in J-Pouch
MS Mary Schneider
Arnaud Hi, I've also had a very high number of BMs per day and night due to the pouch not emptying well. Don't know whether that was due to loss of elasticity or not, but anyhow my life-saving solution to this problem has been to use a catheter to empty the pouch much easier and better. Hopefully it will do the trick for you too ! Look for the thread "irrigation tube ... anyone ?" for details. Good luck, A [ more ]
Jan Dollar I'd like to say this is easily reversible, but the ileum has limited stretch abilities to begin with. If you have chronic inflammation, it causes fibrosis of the bowel walls. This equals a stiff pouch, or loss of elasticity. Chronic pouchitis can also lead to dysplasia (which can be a precursor to cancer), so it really should be treated. The tough thing is knowing if you have pouchitis or just a finicky system (IPS), but IPS does not cause physical damage. Dr. Shen has treated more sick... [ more ]
Mary Schneider Thano you for responding. That may be the case. I've tried dealing with my issues on my own for the past 5 years, ie chronic water diarrhea. I'm supposed to se Dr Shen at the Cleveland Clinic. Hopefully he can advise. I would hate to have another surgery.... [ more ]
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J-Pouch ForumsPouchitis
No Pouchitis for 20 months
R riskman4
AllyKat I did well on pentassa for three years but had to stop because apparently you can get nasal ployops from them and I was getting chronic sinus infections. Glad you found something other than antibiotics that worked [ more ]
TE Marie My GI at the Mayo Clinic prescribed Loperimade for me and told me not to use Pepto Bismol. There is going to be contrary advice from us. If we knew what the magic thing or combination of things to treat pouchitis or anything else for that matter we wouldn't need a support site.Everyone should discuss potential treatments to improve their pouchitis or anything else you are unsure of. CTBarister is right that it slows things down. He is also right on when he we shouldn't promote keeping our... [ more ]
boy's mom This is new information that loperamide ( immodium) would promote SIBO. My son has been taking 6 immodium a day to help limit his bms ( along with antibiotics for the presumed SIBO). Maybe we will try to reduce and see that impacts him. [ more ]
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J-Pouch ForumsGeneral Discussion
Terrible itching
Deanna6Deanna6
Former Member ❤️
Jpouch1064 Yes I have used some hemorroid creams that had lidocaine in them. I think it was anusol. Haven't done it in a long time. If I remember correctly, it really stings at first, but it did help by numbing. [ more ]
Deanna6 I have taken some advice and trying to go back a little with the diet. Cut back on the dairy and go pretty bland again with chicken, eggs, wheat and seems to have helped. Wondering if anyone has used lidocaine on their bum for butt burn ? I have used and liked the calmoseptine IN the last but when it's bad I'd love it to be numb! Thoughts? [ more ]
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J-Pouch ForumsPouchitis
Copay on Xifaxin Dropped From $40 to $10
CTBarristerCTBarrister
CTBarrister Yeah I know, the free trial is 3 pills - a one time offer which I already used up. 4 20 mg pills of Cialis, WITH my AAA discount on non-insurance covered meds, comes to around $154. That is almost $40 a pill. It's greedy and cruel that the manufacturers of ED meds that mostly older men need to exercise a basic human function/need must charge such an insane premium. Cialis is not this expensive in foreign countries which are charging more along the lines of $15 a pill. [ more ]
AllyKat CT you can get a free trial! [ more ]
CTBarrister Originally Posted by AllyKat: I got approved thru Salix patient asst program. FREE! Love u Salix! It's great that Salix has such a program. I wish Cialis had one too!!! LOL!!!!!! [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch removal
buttoutbuttout
buttout Thanks to everyone for your replies. I'm getting enough information to make me feel a little more at ease.. Thanks. [ more ]
Jan Dollar Up at the top right os this page there is a box labled "Dialogs." Click on it and you'll get to a page of the dialogs you are participating in. You can also set your notification settings so that you get an email if there is a new comment in your dialogs. To do that, click on "Manage" in the menu bar and choose your account. Choose "Notifications" from the list on the left. Jan [ more ]
KeepMovinOn How do you look for replies? [ more ]
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J-Pouch ForumsPouchitis
what product to protect skin
N new_J
lclassen CALMOSEPTINE!!! I call it my pink medi, and I can't live without it. I've used it since my surgery, and don't leave home without it I also HIGHLY recommend switching to a wet wipe either with or instead of regular toilet paper (I know some septic or toilet systems won't handle this though). I started using the wipes (like Charmin wet or Cottonelle -- there are some generic ones too) about 10 years ago, and they have saved me. I also carry those with me when I'm out in public -- that paper in... [ more ]
Gumnut Another good thing is Wool Fat also called hydrosised - you would possibly need to wear a pad as it is quite thick, but the benefits are wonderful - it really is worth a try and it not full of all sorts of additives - and is very cheap. My husband had his J pouch op in 1991 - all the very best to you all . . . [ more ]
n/a 22 years later and I still need protective creams (in doubt, partially due to fistula). Calmoseptine is great, but I also use Target's generic A&D ointment (no color, less staining) - they also have generic zinc oxide creams that do the job. If none of the above helps, let your doc know, s/he can prescribe an ointment that contains a steroid (sorry, I forget the name). You do have to keep whatever product you choose on 24/7. As noted above, a bidet helps immensely, you can find them even... [ more ]
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J-Pouch ForumsGeneral Discussion
accident already? !
dgtracydgtracy
dawn58 Metamucil was GREAT for me. It's worth a try. [ more ]
jipalmer Hi dgtracy, I just wanted to commiserate with you. I just recently had surgery as well (1/29/2015) and am now home and feeling like "did I go through all this for nothing??". Although my surgery was different (I've had a j pouch since 2004 and had to have adhesion removal surgery for constant bowel obstructions), I've been home less than a week and am back to feeling how I did before the surgery...bloated/gassy/uncomfortable every time I eat. I hope that this is just a bump in the road for... [ more ]
Spooky dgtracy, It's frustrating, I know. I had my first and only daytime accident with the j-pouch about 3 or 4 days after coming home from the hospital. Before that everything had been fine. I had been watching television, stood up and had sudden urgency, and just didn't make it down the hallway to the bathroom. I was so upset and frustrated, thinking that this would be my "new normal." Thankfully it was an isolated incident, and I just chalk it up to getting used to the pouch. The point is,... [ more ]
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J-Pouch ForumsGeneral Discussion
disability
T Tamtam
TE Marie You probably have Chronic Fatigue too like most of us with fibromyalgia. IMO chronic fatigue as well Chronic pain also causes depression and anxiety I am on 2 different antidepressants and xanex as needed. My Internist, Neurologist and Psychiatrist are all involved with the doses and what kind of antidepressants. For example my neurologist prescribed me amitriptyline for my migraine headaches which prompted my internist to wean me off of another antidepressant. Then my psychiatrist changed... [ more ]
Tamtam TE Marie - I am just very frustrated right now and don't know what to do. I am extremely tired all the time and somedays can barely function. I work full time but it's getting harder and harder. By the end of the word day, I'm done! I have been diagnosed with Depression, Anxiety, Fibromyalgia, and recently Neuropathy. I had the colectomy with ileoanal anastomosis surgeries back in 1993 and 1994. I had UC that went to toxic megacolon so I had emergency colectomy. My GI doctor is 2.5 hours... [ more ]
TE Marie I am disabled and have many health reasons for being so. Below in my signature, are the highlights of my major health problems. My disability date is recognized as the last day I worked, and that was just for 1.5 hours. My first surgery was 7 months later. I filed first with my private insurance after my take down surgery. I filed for social security disability benefits a year after that. You need to have the support of your doctors before you start the process. My claim was approved the... [ more ]
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J-Pouch ForumsGeneral Discussion
Help!
J Jason4
BillV I also have FAP and am thankful that my GI does regular scope exams and takes biopsies wherever he feels necessary. This is how he determined that I had high grade dysplasia in the anal canal and recommended surgery to eliminate the risk of cancer. A good GI should be able to determine if the suspect area is scar tissue and should take biopsies if he has any suspicion of dysplasia. With FAP, regular scope exams are necessary (both upper and lower). In my case, only a limited number of... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Explosive-too much noise
T Tamtam
jeane The courtesy flush works wonders. I sometimes use it a few times. Also run the water in the sink. That helps too. [ more ]
rachelraven Same here. 24 years later, everyone I work with knows my story, and a full on evacuation is more important to me over noise. I only go 4-6X a day, though. You our can always do the courtesy flush. �� [ more ]
Annikki I have no problems sharing my situation and after 16 years it doesn't bother me anymore that I am a noisy pooper. [ more ]
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J-Pouch ForumsGeneral Discussion
2nd surgery compared to 1st
G Goody21
rachelraven Two step, years ago. Second was much easier, IMO. I was out of the hospital in 4 days, and in full time nursing school 4 months later. Though i I guess with your 3 step that's not really equal. Guess my second will be your third. [ more ]
ccanepa456 I had a three step as well. I am going to be honest, for me the second was the worst. I am in pediatrics and they talked me into getting an eipdural afterwards for pain management which Im not sure why because the pain pump with dilaudid worked fine I thought. But I ended up getting a UTI from the folly catheter and my epidural was all bad with leakage and making me extremely itchy etc. It just was more painful for me, but once everything was figured out it was okay. I would say if you had... [ more ]
joekroscen I had my 1st surgery 7months ago it was emergency, i recovered in about 10 days. i just had 2nd stage 3 weeks ago and it's a bit harder than the 1st one but only for about a week, no rectal pain tho but i do go pass mucous about 4 x day, only thing is your stoma is much smaller and no more loop, i dont like this stoma always leakage. currently waiting for 3rd stage. Dx with UC 2012 meds: corticosteroids, Asacol, 6 MP, Salofalk, Infliximab End ileostomy 2014 no more meds [ more ]
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J-Pouch ForumsGeneral Discussion
Seeing a J pouch in my future
thumprharethumprhare
thumprhare Well I have a date next week...happy thoughts and prayers this way. Will keep you guys updated. [ more ]
ks1905 Originally Posted by thumprhare: I just don't know how my family and house is going to function. Much less, how I am going to function. I am glad I found you all. I hired a cleaning service for my house. It was well worth it for me not to have to worry about it. You should be able to drive as soon as you are off of the narcotic pain relievers; I was off of mine within 2 weeks of being released. The hospital arranged for a home nurse to visit me every day and to help me change my appliance... [ more ]
Annikki I was 24 when had my pouch surgery. It was a rough first few weeks after...had a massive infection in my incision, 10 days in the hospital and then a nurse visiting for a week to pack my wound BUT then my recovery was quicker and I was out doing stuff. Three months after I moved to a city 8 hours away from my parents and started my life again. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-pouch flopping over on itself
MS Mary Schneider
skn69 There are lots of this type of problem with k pouches...when they 'fall off of the wall' they can flop or twist over. I had mine tacked up to the wall again because it was twisting. It wasn't the first time either... they did it with a laporoscopic procedure...not open surgery. There are a lot of solutions that may be possible through laporoscopy without needing either open surgery or full blown pouch revision. Ask your surgeon or have him refer you to a lap specialist. Sharon [ more ]
Jan Dollar I have heard of this, but mostly associated with an s-pouch. i have not heard of non-surgical options for this. I have read about pouch revision as opposed to pouch redo, but I am sure it depends on the health of your current pouch and the cause of the defect. Jan [ more ]
TE Marie Did they discuss having minor surgery to suture it in place or a pouch advancement to make it smaller? Can they make a new jpouch for you? Have you discussed a K/BCIR pouch? I don't have one but several members have gone to those. Good Luck [ more ]
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J-Pouch ForumsGeneral Discussion
PEG Tube (Feeding Tube) Removal
MN Mark N
skn69 I had a gastric tube put in twice for pouch surgeries (once for a month & the other for 2 weeks) but came out without any problem...sort of felt like the 'drop' in the roller coaster when it came out but didn't hurt (it was sutured in to my stomach so the sutures hurt more than the tube removal...they were red and swollen). I was very acidy so there was a bit of green acid burn when it was pulled but it healed beautifully. No complications Sharon [ more ]
BillV I had a gastric tube that was kept in for almost 2 weeks after surgery. I did experience a sharp pain when it was removed, but it was quickly over and I had no further pain. I believe a gastric tube is similar to a PEG tube. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need referral for mayo or Cleveland clinic
K K78
canlafre Hi. I had j pouch surgery with him in October of 2008. I had no complaints or complications. I went straight to a j pouch in one surgery. My GI doc recommended him. He said he was the best and he would send his family to him. I'm not sure what advance jpouch surgery is. But I trust him with my life. I cried when I found he was leaving. I would not hesitate to have him as my doctor. Not sure if I helped. [ more ]
K78 Hey canlafre I met with dr. Hyman when I was in Chicago. He was very nice but I worried about his experience level with pouch advancement surgery which he recommended. Just curious if you had surgery with him what type & how is the outcome? Thanks! [ more ]
K78 Thanks all for the replies! [ more ]
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J-Pouch ForumsHelp! Need advice now!
BM after right after eating
salinabeanosalinabeano
rachelraven It used to be more common for me to have to go after eating, not usually 15 minutes, I'd say within an hour, but that's not always true for me now. I can defer for some time now. Time may change things for you, eventually. [ more ]
CTBarrister If you take an anti-spasmodic 30-45 minutes before meals this issue probably will be nipped in the bud. Bentyl, levsin or donnatal. Surprised nobody has mentioned this to you - irregular peristalsis or excessive peristalsis is a very common issue after J Pouch surgery. The anti-spasmodic drugs can make you feel a little loopy- I found that donnatal has the least effect in that regard. [ more ]
ChrIssy25 Originally Posted by salinabeano: Hello. I had jpouch surgery 4 years ago. I am happy with the results except for when I eat breakfast, lunch or dinner whether home or out, I feel that I need to have a BM within 15 minutes of eating. I am taking lomotil 2 tablets 4 times a day along with levsin also 2 tabs 4 times a day about 15 before meals. I almost do not want to go out and eat with my family anymore or if I do go out, we have to do our errands first then eat so I can rush home to BM. I... [ more ]
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J-Pouch ForumsGeneral Discussion
Dilated j-pouch ?
TE MarieTE Marie
TE Marie ks1905, Thanks for responding. I'm on my way for the results consultation and your information is helpful. I had a GI X-ray with contrast this morning and am glad to be done with tests! [ more ]
ks1905 I had my done about a month ago and things are so MUCH better but I am starting to get some small symptoms again. I think that I'll need another dilatation soon. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Twins with a Jpouch?!?
J JLG5045
SV I have a jpouch and delivered twins (IVF) via c section 6 1/2 years ago. They monitored me as a high risk pregnancy and watched all three of us very closely the whole pregnancy and more so as it got later into the pregnancy I was going once a week. They came 6 weeks early, both waters broke at the same time after getting into bed one night. They spent a month in the NICU but are wonderful, beautiful little girls!! I took great care of myself, ate very well and although I was working, I had a... [ more ]
skn69 No Advice, just congratulations! Sharon [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouch advancement
K K78
vstRN Hi K78, I'm really sorry to hear you are going through this. I had a pouch advancement which was done in 3 surgeries. Unfortunately, it was not successful for me and my RV came back after about 2 months from second take down. It was emotionally and physically exhausting. I ended up having my pouch removed. My j-pouch was unfortunately nothing but a nightmare for me. I have a permanent ileostomy and honestly, I finally have my life back. Oh - and Crohns was ruled out for me. I think a j-pouch... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis or something else?
R Rose2368
Rodshunny Hi. Sorry to hear about your troubles. Has your Dr. Ever tested you for C. Diff infections? They really did a number on me before my pouch. They caused nasty smells with me. Just wanted to put that out there just in case. The symptoms are similar to pouchitis...pain, diarrhea, bleeding, etc. Mine went undiagnosed for two months. It was like night and day when I got rid of it. Good luck. I hop you improve very soon! [ more ]
shadoe-d normally when i get pouchitis it is accompanied by a severe smell "death smell" is what i tell my dr he puts me on aline and if that don't work flagyl [ more ]
Jan Dollar Canasa is for cuffitis (usual cause of bleeding). Three days is not long enough to expect improvement. It is entirely possible to have both pouchitis and cuffitis. Jan [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
What is c-section recovery like?
L LC
lholdem The recovery from the C-section was cake compared to the proctocolectomy surgery, and about on par with the take-down surgery - I was (am) young when I had it, so I was getting back to normal after a month or so. As far as having a baby goes, though, I felt like the emotional and physical recovery and adjustment took much longer. I started back to work part-time around 10 weeks. I don't know if you can take unpaid time off, but FMLA allowed me to take 12 weeks total. Every woman is different... [ more ]
Annikki I found recovery quick for both. Within two weeks I has up and athem. However I think the DR recommend 6 week before any heavy lifting. I thought C-sections were easy compared to other surgeries I had had. [ more ]
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J-Pouch ForumsGeneral Discussion
Jan, etc: Uceris (budesonide rectal foam for pouchitis?
H hattie
Jan Dollar It should be as effective, if not more. This is because you get a more concentrated effect where you need it, without an increased dose. As for expense, expect it to be high, since it is new and no generic available. I am not sure how your drug plan works, but I get brand name non-formulary drugs for the same co-pay as other brand name drugs. But, this is only true if my doctor writes the prescription with exception codes that allow for that coverage. I suppose it is easier for my doc,... [ more ]
rustyskyline The study says that the budesonide is as effective as oral metronidazole; that's fine but how does it compare to oral budesonide (entocort). I'd also like to know if it still costs as much. I know it varies from health plan to health plan but for me entocort is wildly expensive. Almost as crazy as Xifaxan. [ more ]
Jan Dollar Yes, it should be effective for pouchitis, if that medication works for you. Being a more targeted application, the value is a more lical concentration of the drug and less systemic absorption. See the study below. http://www.ncbi.nlm.nih.gov/pubmed/11856075 Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Surgery
bobbymsgtbobbymsgt
Lambiepie Bobby, I just had this surgery four weeks ago. Please feel free to PM me; I will share anything and everything with you. I have some irritation around my stoma and a lot of gas output but, other than that, I'm very happy that I went through with it. I am no longer running to the bathroom in pain and that's BIG. [ more ]
Catinthehat seems like a major decision. Has your j-pouch failed? [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
One week post op ileostomy, 1 of 3 jpouch surgeries
SF Sharon Flynn
Virdent Hey Sharon Im glad you're doing well. You say your old life doesn't exist, but hey it'll be back before you know it, I think it took me a little over a month from the first surgery before I felt physically strong enough to really start getting back in the groove. [ more ]
JeffDC One day at a time. Your body is still trying to figure out what just happened to it, Focus on the long term, and listen to your body. [ more ]
TE Marie I know it doesn't look like it now but things will improve. This process is a long one, a really long one. I thought my hysterectomy was bad. That was a piece of cake compared to these surgeries. Most people thrive after recovering from these surgeries, especially those that had UC. Hopefully you will be able to participate in your daughters lives more after you heal, than before when ill. Good Luck [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Pouchitis/first year after takedown
slightly_creativeslightly_creative
slightly_creative Thank you Jan, your responses are always welcomed and appreciated! Going to read through that article now! -Mike [ more ]
Jan Dollar Actually, it is acute pouchitis that is common (the type that resolves quickly with a course of antibiotics). It becomes more and more common as the pouch ages. Chronic or recurring pouchitis is not common. There are structural issues that can cause chronic pouchitis, like an anal stricture that prevents proper emptying. Anal stricture is pretty common. in this thread in the Pouchitis Forum there is a link to a very comprehensive article about pouchitis. [ more ]
slightly_creative Yeah It would be nice seeing the article, but I've been online reading on it a lot today. It's a bittersweet situation really, sure the days suffering with UC are over (which was hands down much worse) but now trying to deal with and get over this is just another bump in the road. The cipro alone wasn't doing the complete job so today I picked up more Flagyl, I'm hoping to wake up tomorrow feeling better! I find that combination of medications does the trick. I'm going to balance the... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Anthem Data Breach; Customer Info Exposed
CTBarristerCTBarrister
CeeeeCeeee Those of us on Medicare know first hand how little our federal govt. cares about our security. Our Medicare membership number is printed in bold on our Medicare card and.........it is exactly the same as our social security number plus a couple of letters! So much for feeling safe! [ more ]
ks1905 Reports are that they didn't encrypt the Social Security Numbers, which makes me upset as a former customer of Blue Cross. It seems like a simple security step since Social Security numbers are so important. [ more ]
ks1905 More info on it.... looks like State-sponsored Chinese hackers. http://www.bloomberg.com/news/...een-in-anthem-attack They will use this information to send out fishing emails to get people to click on links and download Trojan malware into their computers. With all the personal data the hackers got they can make these emails look very realistic and convincing. [ more ]
See all 3 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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