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J-Pouch ForumsGeneral Discussion
Getting the right nutrition ?.
drew303drew303
rachelraven I'm like Scott: minimal dietary changes for me, too. I'm most affected if I don't chew well (at the outlet), so I also tend to avoid mushrooms, corn, nuts, stuff like that (though I ate it all for years with no issues). I'm lactose intolerant, so I minimize milk products or use a dairy aid. I agree, though, try things and weed out what doesn't work for you, as we are all different. Like Sharon, I tend to avoid lots of carbs, but when I do eat them, I make sure they're small portions,... [ more ]
skn69 Drew, What kind of diet do you eat now? What are your restrictions pouch-wise? What does your pouch like or dislike? First you have to make sure that your body accepts it before you really can integrate it into your diet...some people are successful on soya protien or whey others can't take them...I do well on chicken and fish, a little red meat and lots of steamed, green veggies and salads with only minimal diary and carbs...add that to a daily exercise routine and you shouldn't have a... [ more ]
Scott F Drew, I'd suggest trying the diet you'd like to be on if you didn't have a J-pouch, and see if it works for you. You can introduce it gradually, if you like, to make it easier to identify anything that disagrees with you. My diet is influenced only a little bit by my pouch. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
UTI's with a pouch
Ally RollTideAlly RollTide
n/a You could also try taking cranberry extract capsules on a daily basis in an attempt to prevent the UTI's, along with lots of water. [ more ]
Pluot Are you using tampons by any chance? I wonder if perhaps the string is getting soiled during BMs and that is transferring bacteria to your urinary tract... I don't know, just a random theory! [ more ]
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J-Pouch ForumsGeneral Discussion
New Study on Predictive Factors for Chronic Pouchitis
Jan DollarJan Dollar
Jan Dollar No, the study was based on the entire 244 patients that met the inclusion criteria. What is not stated in the abstract is whether UC was an inclusion criterium. So, there could be some with FAP, who have a very low pouchitis risk. That might explain the low pouchitis incidence in the study group. I believe other studies I've read indicate pouchitis rates closer to 50% for IBD patients. What the study was saying is that it was taking high dose or long term steroids right before surgery was a... [ more ]
Lesandiego Am I wrong in thinking that 71.5% of the patients who DID not develop pouchitis is fairly good odds? I wonder how many of the 244 patients were on steroids just before colectomy? If I am reading this study correctly, it was based only on 66 patients who developed pouchitis. [ more ]
Aecw we're the other side - my son was only on steroids for a very short time as they didnt work for him. He was put on higher risk meds like Tacrolimus then 6MP then eventually Remicade. Since surgery over 5 years ago he has had mild pouchitis pretty much continuously. The only symptoms he has is leakage at night. It's usally very light and he's learning to control it based on what he eats in the evening. [ more ]
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J-Pouch ForumsHelp! Need advice now!
post take down and work
DW debs w
phonix2g My takedown was March 23rd and hoping to get back Sept 23rd. I had a rough go at surgery plagued with infection and months of extreme anemia. Felt like anything that could happen did. I'm not 100% yet and hoping with my workplace arrangement rep to be able to start of 4 days at 4 hours. Luckily my company has short term and long term disability benefits and are very willing to work with me to try and to get me back to work in my same position. I'm blessed to have a job that has great... [ more ]
kta I had a rough go with being very sick before surgery, then needed 4 surgeries total with a long month in there dealing with internal infection. That said, I was very weak by takedown. I went back to work teaching full time in 6 weeks. It was too soon. I could have done 1/2 time, but full time was an overload. It was a rough year because I healed a lot slower due to total physical and intellectual exhaustion. [ more ]
debs w Thanks everyone, that is really encouraging to know this. 2 weeks - wow!!..If the take down goes ahead for me, I will keep a food diary and see how the output goes. Is it better to eat - say 6 small meals, or keep to 3 meals - does it make any difference to start with - e.g.. constant out put? [ more ]
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J-Pouch ForumsGeneral Discussion
I wish so much there was a support group in my area.
FrancesFrances
CTBarrister There is a very good CCFA support group in my area which meets at the Guilford, Connecticut police station community room the 3rd Tuesday night every month. It's a mix of people who have UC, Crohn's, indeterminate Crohn's/Colitis, J Pouchers and ileostomates. We have pretty much the same core group every month. The people in the group are generally a bit younger than me but Internet savvy and very well informed. Most of them seem to be managing their illnesses very well. Some very good... [ more ]
Jason.B Yeah it is great having some on to talk to & bounce ideas off. And good to finally meet you dgtracy. Frances, call some of the local hospitals and see if they have a ostomy support group that might meet there, that is as close to a j pouch group here in Charleston as we can get. I have yet to go to a meeting since cant get time off work to go, but my wife talks to the lady that runs it for help and info since my 1st surgery a year ago, she calls and checks on me every month. [ more ]
dgtracy I was fortunate enough that a member on here lives down the road from me..seriously like 7 minutes away..if that. Today i actually met up with him face to face after talking for a month or so and its really nice to be able to talk with someone who gets it because they are going through it. i 100% suggest trying to find a group in your area, even like suebear said a group that has people in it who just have some type of suffering would be good to for you to speak too for the motivational aspect. [ more ]
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J-Pouch ForumsHelp! Need advice now!
chronic insomnia and maybe reversal next week
DW debs w
debs w Thanks Steph, I am in Yorkshire..my take down hasn't been done, sp v upset to say the least. Will do new post about it. Debx [ more ]
Stephaniesays91 I'm 5 weeks post op now and have never been a great sleeper, but I must admit having the pouch hasn't helped (I'm still very early stages though). The first 3/4 weeks for me were a struggle but I'm starting to get the hang of it now! I'd say I typically get up 2/3 times a night to go to the toilet but I've never had any problems leaking ect! Where in the uk are you from? My stoma nurse kept me away from fruit and veggies in hospital but wanted me to start introducing them slowly but surely a... [ more ]
debs w Thanks for the advise Scott, I love my food as well! Will see, first if the surgeon does it and then take it from there. Deb [ more ]
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J-Pouch ForumsMen's Health
Pain shooting out groin area..just sitting here..sometimes while walking
dgtracydgtracy
Jason.B Good luck with that. Make sure she is looking at you and doesn't mumble to her self and forget what you just said. Really make sure you hit home that it is something she needs to look into. [ more ]
dgtracy Thanks jan, will talk to her soon, should have an appt coming up [ more ]
Jan Dollar Yeah, when they build the j-pouch, there can be bleeding/swelling in the lower pelvis. This can take a long time to simmer down. Plus, scar tissue can get bound up with the nerves down there. It can seem to be worsening now if you are increasing your activity level, even if things really are stable or improving. The fact that this is positional supports this. Never the less, you should call your doc and let him know about the symptoms and let him decide if you should take the wait and see... [ more ]
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J-Pouch ForumsGeneral Discussion
Off flagyl, more symptoms - looking to tie all the things together.
SpookySpooky
Spooky Yes, antibiotics kill the bacteria. What I meant by masking is that since I'm going to the clinic, I want to make sure we're getting a clear picture of the symptoms I'm having while NOT taking flagyl. If it is SIBO, I assume if I'm taking antibiotics we'd get a false negative. That being said, other than the bleeding, the rest of the symptoms I'm having are new since early July, so I don't think SIBO would have been the issue all along. Prior to now, I've only needed antibiotics once in... [ more ]
CTBarrister In a pouchitis situation, you are possibly dealing with bacterial overgrowth and the antibiotics do not "mask the symptoms", they kill the bacteria that are causing the symptoms. Eventually the bacteria become resistant and you have to rotate to another antibiotic. I have been rotating antibiotics for 18 years now of 21 with a J Pouch. I can't go off antibiotics for more than a week, but more recently I have discovered I can go one week on antibiotics and one week on lactulose with no... [ more ]
Spooky I'd also say pouchitis but the scope really didn't show that. The c.diff test that I had in July when the diarrhea flared up came back negative; I had this confirmed over the phone by the nurse. I do have a renewal on the flagyl, but obviously I don't want to start another course before I'm seen at the clinic particularly if the antibiotics just mask symptoms; not to mention, I really don't want to keep taking antibiotics if there is no bonafide reason. I've been on two courses of... [ more ]
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J-Pouch ForumsK-Pouch Korner
Distended lower abdomen
SA Sydney AZ
skn69 Localised and a grapefruit sounds suspiciously like a hernia but it could also be a nasty abscess or cyst or some other hot and nasty problem...if your pouch i functioning well then that is half the battle and anything else should be fixable...keep us posted on the results of the scan... Sharon [ more ]
Bodoni Let's hope the scan shows something. I suppose it could be a hernia. I am a long time K-poucher. I had a hernia years ago. Had it repaired and no problems since. Good luck and keep us posted. [ more ]
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J-Pouch ForumsGeneral Discussion
Hypaque enema
ceewceew
ceew Manny, good t hear you are doing well after 3 weeks. [ more ]
KeepFighting(Manny) Just noticed I am two days late lol happy to hear the good news... Good luck with the takedown next week.. I'm 3 weeks post takedown and things are finally calming down (pain, urgency, etc) I'm thinking this was a great decision to have this procedure done.. thank god technology has come as far as it has :-) [ more ]
KeepFighting(Manny) I agree with everyone else, its a simple procedure... I had mine done the same day as a ct scan of my abdomen... I think the whole procedure took 15 min tops... No need to worry... [ more ]
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J-Pouch ForumsGeneral Discussion
Traveling issues anyone ?
D Dbone
sudie Vanessavy In what way does eating bread affect you or simbo ? Do you get spasms pain and needing to empty, I realize that you have a K pouch and empty differently to j pouch,I am gluten intolerant but still find I have trouble after even having gluten free bread lots of spasm urgency gas, have had pouchitus from time to time but alright at the moment would appreciate some input, is simbo connected to pouchitus at all I also get lots of noise and rumbling thanks [ more ]
vanessavy I stick to proteins and I still am adventurous with food. I just avoid sugar, it might be in a sauce if I can't avoid it... but I don't eat desserts. I also avoid bread, bread will kick my SIBO in big time. I do miss my kitchen a lot when I am in hotels for months at a time. But for those times I hit the salad bar at Whole Foods or get fresh seafood at the docks. [ more ]
hfc I suppose I have just gotten used to my good and bad days. I eat most things put in front of me (including all sorts of interesting foods in China last year). I take my pepto bismol tablets, keep well hydrated, and don't drink the local tap water if I have any questions. [ more ]
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J-Pouch ForumsGeneral Discussion
Dr. In Columbus Ohio
N Nroley
n/a Hmmm, this group wouldn't take me on as a patient - I admit it was about 20 years after jpouch construction and I have a fistula to boot - could be the reason. Hopefully you won't have a problem getting in there - they're a good group - but on the off-chance ... I'm now seeing Edward Levine at OSU. Haven't needed his services, so can't report any details, but I have established a relationship with him. You could also consider the Cleveland Clinic gastros. [ more ]
Mike H The Ohio Gastrointestinal Group has about 20 different doctors. They will be treating after my takedown next month. They are the grop that diagnosed me and sent me to the Cleveland Clinic for the J Pouch surgery. [ more ]
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J-Pouch ForumsGeneral Discussion
help please..
ST shoot thru
mgmt10 Glad you are home and she's doing a bit better. I think it's worse when you are stuck in the hospital. I bet she bounces back quicker now that she's home and comfy in her own bed. It's a brutal surgery. I remember the pain all too well but I still say I would do it over in a heart beat. It's so nice to live without UC. You're a great hubby for seeking out help here for her! This is a great site if she needs it in the future. [ more ]
shoot thru Well we got to come home tuesday afternoon. It took some convinceing to say the least. Think that was the most horrible experience of my life. Was like a 15 DAY NIGHTMARE. Anyone needing this done all I can say is do your homework. She needed it done no doubt. Research your choices. And anyone that tells you the cleveland clinic is the best. Call me. 269 317 4230. We have some very good hospitals here in kalamzoo mi that I wish I would have checked into first.. thanks for all the replys. It... [ more ]
mgmt10 Hope you all got to go home by now! [ more ]
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J-Pouch ForumsGeneral Discussion
Constipation??? :(
SavannahSavannah
Scott F My preference is for Metamucil, a rounded tablespoon in about 8 ounces of water twice a day with a meal. I take it just before breakfast and dinner, while others prefer after dinner. There are lots of ways to loosen things up, and others are likely to suggest other methods. Give something a try and pay attention to how it works for you. [ more ]
KeepFighting(Manny) I'm very new to the j pouch world (3 weeks to be exact) However I have experienced a lil constipation since my takedown and one thing that worked for me was hot tea or coffee or pretty much anything with high sugar content... I try staying away from any stool softeners or anti diareah medicines... I've noticed just changing my diet usually does the trick for me [ more ]
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J-Pouch ForumsGeneral Discussion
How to get insurance
I iHateColitis
vanessavy She didn't have Cobra actually she just applied for the HIPPA. She is pretty much almost disabled from getting a jpouch so hasn't worked in almost 2 years. [ more ]
Jan Dollar HIPAA conversion coverage is not the same as Obamacare, but is what is currently available when your Cobra coverage runs out. Cobra is not cheap either. I will be looking into the insurance exchanges in October when they open, for my son. He is unemployed, has UC, and may benefit from the new coverage. My husband and I have been paying for his insurance. Vanessa, I don't think you are the only one who isn't interested in Obamacare, as there is a huge movement to try to get it repealed. But,... [ more ]
vanessavy I lost my insruance 2 weeks ago so I pay cash at CC and everything else at the moment. Waiting for the Army to fix this mess up and we will re reinstated with Tricare. I know my friend took out new insurance 6 months ago in California that was called HIPPA and they weren't allowed to even ask her history but it is pricey, about 500 a month. I must be the only one that prefers to have insurance not related to obamacare. I am not a fan though. If this really happens, that they can't charge us... [ more ]
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J-Pouch ForumsGeneral Discussion
Finding right antidepressent thats helps.
FrancesFrances
TE Marie I'm in several support groups on Facebook including for depression and anxiety as well as j-pouch and fibromyalgia. They are closed groups, meaning no one can see what you are posting but other members of the group and unless you are friends with the members outside of the group they do not see what's going on your FB page. The first FB group I joined was one that spun off from some of us on here. If you are interested in learning more or have any questions please PM me. I've found a lot of... [ more ]
Frances My vacation was nice but a little two long for it to be just my sister and i and leaving my car at her house and driving 3 hours to her other house left me trapped. I know i am still adjusting from effexor to wellbutrin. They are right wellbutrin does not help with aniexty and so when i take the wellburtrin i take my 1mg klonipin with it. I am very on edge hopefully it will get better. I am not as tired have more energy still working out and acuually starting to loose weight, feel like i... [ more ]
TE Marie I hope you are having a great vacation Frances. I love lake Michigan. I hope you are by the great sand dunes, just like being at the ocean in middle America. I hope the medication is fine and that if needed you just need to take one of the old pills. I'm on 300 wellbrutrin a day plus another one so I don't think it should hurt to take 2 meds on one day. Please let us how you are doing. [ more ]
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J-Pouch ForumsGeneral Discussion
New antibody in treatment of Crohns and UC
SpookySpooky
Jan Dollar In the case of IBD, there is also the random incidence of spontaneous remission. This occurs even without placebo. But, yes, with virtually everything, there is a placebo effect, where believing something will work actually affects the outcome (and why they need double blinding, because the scientists can unknowingly affect outcome by their behavior with the people who are getting the actual treatment vs. placebo). The mind is a powerful thing, and why you need to have a positive attitude... [ more ]
Scott F Placebos routinely show surprisingly high response rates. Some of it may be a genuine effect of optimism on biological processes (e.g. psychoneuroimmunology), and most of the results being measured are subjective, and thus readily influenced by our expectations. [ more ]
Jan Dollar Yeah, Europe and North America have the highest rates in the world. It appears that hey have not published the vedolizumab trial results, but there are 7 clinical trials, most of which are complete. http://clinicaltrials.gov/ct2/...izumab&Search=Search Jan [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Food during period - angry pouch!
kblgalkblgal
Ally RollTide I hate having a pouch & a period!! During that time of the month. I found that a heating pad helps me and eating a BRATs diet. But sometimes it just stinks being a women. Thanks for asking this question. I'm only 2 months post takedown and was wondering if the periods get any easier!?! Thanks [ more ]
Sonja6 Im with Sharon on this. I am also gluten free, which has helped a lot. I try to keep it super basic. No complex foods!! Put the cookies down, they wont help! I swear [ more ]
kblgal Well, I'm only a little over a month post-takedown so I'm not sure if I answer is relevant since it could change... but I still have to use the bathroom every, maybe 1.5 hrs? Obviously shorter time frame if I've just eaten. I don't know if that's normal or not. Without the immodium, I just have a constant feeling of urgency - well, worse than it is right now, lol. Though during my period, I get cramped up so I don't have the feeling of urgency as much. I've noticed most people on here just... [ more ]
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J-Pouch ForumsGeneral Discussion
nightime incontinence WHY???
K KeepFighting(Manny)
Scott F Manny, there's no reason your pouch shouldn't give you a lifetime of good service. Folks (appropriately) tend to come to support forums when they have a problem. [ more ]
KeepFighting(Manny) oh wow, that's great Jan... I'm on forums all the time about j pouches and get terrified because of all the complications i see people reporting.. I had a horrible time with my temp ileostomy.. I just hope my pouch last a long time, at least till i get married and have kids of my own [ more ]
Jan Dollar 18 years this month. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Asacol removed from the market?
D DaveInNorCal
miltoncarl After a patent expires the invention becomes public domain, pharmaceuticals can be replaced by generics using the identical chemistry disclosed in the patent. [ more ]
LaneyLove this is common in the pharma world..as a previous pharma sales rep. Companies typically "revamp" the original product when it is losing it's patent to extend the amount of time $$$ comes in... There will still be a generic version available of the original product, but, the new product which will usually be an Extended Release Version or Immediate Release will be branded..and thus much more expensive. [ more ]
Jan Dollar So, it appears that it is official that Delzicol is replacing Asacol, as it is bioequivalent. http://www.ashp.org/DrugShorta...ulletin.aspx?id=1017 So, it is not as if there will be no treatment available. I agree though, that it seems to be sort of an "end run" to avoid losing market share. http://www.istockanalyst.com/f...-of-potential-upside Jan [ more ]
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J-Pouch ForumsGeneral Discussion
W pouches?
S Salmak
TKD Lisa The W pouch was supposed to be the big improvement 20 years ago (can't believe it is that long) when I got mine due to the increased capacity. I had no significant problems until I got pregnant and needed surgery at 7 months pregnant due to adhesions and then again a month ago due to a kink in my small intestine. These were unrelated to the J/W debate. In the years after my surgery I returned to running and did a few half marathons and 1 marathon without having to stop for a bathroom break,... [ more ]
Jan Dollar Thw w-pouch is fine and not associated with significant long term problems, like the s-pouch. It is not done much in the U.S. because it is more time consuming and does not offer a better outcome in the long run. Also, if there is a narrow pelvis, it may be difficult, if not impossible. But, there are still a few surgeons who prefer it. I guess it depends on what they were taught and are accustomed to. It used to be thought that it was superior to the j-pouch because it was a larger pouch,... [ more ]
vanessavy I only hear S, K or J pouches mentioned at Cleveland CLinic. That is what I go off these days. [ more ]
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J-Pouch ForumsGeneral Discussion
Jan, Just a little help please - C Diff
Mema 1Mema 1
vanessavy This is the only one that helps prevent c.diff from coming back it doesn't stop it though or get rid of it. It is a good thing to take if you are on an antibiotic like cipro. For me since I have had c.diff if I have to ever take cipro I have to take flagyl at the same time to fight the c.diff. Shen doesn't ever recommend I take cipro though again. If you are on cipro, suprax, omniceff or any of those other antibitoics that can cause it. Stay out of public bathrooms, wash your hands... [ more ]
Jan Dollar C. diff spores can live a long, long time outside the body, even without suitable nutrient media. One source I read said 5 months. This is why it is such a bugger in hospitals. You cannot get rid of it with a quick wipe down of alcohol or weak bacteriocidal solution. Inside the body, where it is basically in a "happy nest," it can lay dormant from antibiotics that the growing germ is susceptible to, or other resident flora that prevents it from flourishing. It also can can be active, but... [ more ]
Mema 1 Thanks Scott and Jan for always being there. Sometimes ignorance IS bliss, and with all the posts talking about Cipro and C Diff, being the crazy person that I am, got very frightened thinking that I just couldn't deal with another thing at this moment. So thank you both for putting my mind at ease. Jan, I usually take the probiotic 3 hours before the antibiotic - think that's the right timing, hope so anyway. Am sticking with the Equate and forget about putting one more thing in my mouth... [ more ]
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J-Pouch ForumsHelp! Need advice now!
What should I do?
G Ginabello
Ginabello Hi TE.. I went to see him on Monday..The lump had opened up by then and he said it was an ulcer and it looked fine..He said the draining seton was ok to.I do wonder if it was sitting for almost 10 hours an my butt?.I don't know much about ulcers outside the rectum..I see him Sept 5th again..I am still taking my 3 to 4 baths a day and feel better today..I do wonder if I have crohn's instead of colitis? [ more ]
TE Marie I think you should call and ask your doctor what to do. S/he might want to see you sooner. They keep appointments open for acute problems that need to be seen ASAP. I hope all works out fine. [ more ]
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J-Pouch ForumsGeneral Discussion
Never healing wound?!
Stephaniesays91Stephaniesays91
Ikh I had a crater-like hole after the second laparotomy in april, and now another crater-like (a bit smaller, the first was about 5cm diameter) now at the previous ostomy location. the first healed quickly using equin collagen, polyurethane foam and "silver aquacell" (all those advised by a vulnologist) but unfortunately it formed a granuloma and its surgical removing make another smaller hole which I hope will heal. the second I'm putting the same treatment and it's going well so far. I advise... [ more ]
Iron Sights As I understand it, a dehiscence of an abdominal closure is extremely rare. Furthermore, the chance of having a wound producing odorless and clear/white/pinkish fluid be infected is also very rare. Granted that we all know how "rare" our conditions are, whilst still being the select few, I'd recommend getting ahold of your surgeon asap for a follow up. It doesn't make sense that the wound area keeps getting larger. Having to see the gp to continually pack the wound also doesn't make sense. [ more ]
Iron Sights I went through something similar after my colectomy. The top of the stitched incision had popped open and was oozing a clear and odorless fluid. Long story short, the opening kept getting larger. At this point, two weeks post op, I ended up losing 30-50 cc of fluid out of the hole. After contacting my surgeon (Mayo Clinic) due to the extreme fluid loss, I was referred to a local surgeon (I'm 1000+ miles away). A dehiscence of the muscle tissue under the skin and fat layers occurred, and... [ more ]
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J-Pouch ForumsGeneral Discussion
Humira dilemma
ManchesterManchester
Jan Dollar When I was on Humira and was traveling, I just adjusted my injection days so that I had an injection just before leaving, then had an injection just after returning. I was on weekly injections, so it was a bit of a hassle. If I knew there would be a fridge where I was staying, I'd bring a syringe with me. I got a travel cold pack from the manufacturer for free, and it was great. Even though you can leave it out at room temp for quite a while, I'd be concerned about uneven ambient... [ more ]
Manchester Just received a reply from my Gastro:- Hi Robert, Abbvie, the company who make humira have issued some new guidelines recently. A single humira pen can be stored at room temperature up to 25°C for a maximum period of 14 days but it must be protected from the light. Once removed from the refrigerator the pen must be used within 14 days or discarded even if it is returned to the refrigerator. Hope that all makes sense. With regards to your appointment with Cath, I will speak to my secretary... [ more ]
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J-Pouch ForumsPouchitis
walk
M michiecarmel1981
TE Marie CCFA, Crohns and Colitis Foundations of America has walks all over the United States and their research helps to fund research that helps us all. Google them, they also have summer camps for children and/or teenagers with IBD and I know many j-pouchers that volunteer as counselors at those camps. I have not heard of a specific Pouchitis walk. I guess Dr. Shen's office at the Cleveland Clinic might be a place to inquire about it. [ more ]
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J-Pouch ForumsGeneral Discussion
C Diff --HELP!!
Susan HamiltonSusan Hamilton
TE Marie I don't know why they put you on Cipro to begin with That's what caused it once when I still had my colon. I feel so bad for you. You probably need to get back on the vanco because it is obviously not gone. Been there, done that and it's scary when you are afraid it's not going to go away. I have had instances since having c.diff that I thought I had it back and had stool tests that were negative. Come to find out I now have chronic pouchitis instead and the symptoms are similar. I take... [ more ]
Scott F Don't you mean *positive*? Why would you do a fecal transplant if there's no C dif? [ more ]
Susan Hamilton I tested positive for C Diff on August 1. I haven't been restested since I finished this round of Vanco. I really think it is still C Diff but I guess I won't know for sure unless they retest. Last time I had C Diff I was hospitalized (at Cleveland Clinic) and they talked then of doing a fecal transplant. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Motility issues with oxycodone
SavannahSavannah
TE Marie I'd like to suggest drinking apple, white grape or prune juice. There are also magnesium supplements you can use and find them in the vitamin section at the drug store. [ more ]
Jan Dollar Absolutely. I take Norco for chronic pain. I was taking just one a day for a long time, but my rheumy recommended a slight increase for my daily dosing. I added only 1/2 tablet, and have since had to reduce my Imodium use by 1/2-3/4. So, yes, there is a definite correlation. And sure, as your pouch matures, it becomes more efficient at extracting water. If this is becoming a big problem, you may have to add daily non stimulating laxative to keep things moving, like Milk of Magnesia or... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Had my scope today, but
N Nroley
Nroley The scope was just to check out my pouch really, it hadn't been scoped in a long time and I've been having alot of stomach problems and inflammation in my small intestine. Knowing I have a stricture makes me realize I have had symptoms, but I didn't even know what a stricture was so I didn't make the connection. They are going to help me get into a surgeon I believe, my current dr. I a GI, but not a surgeon. He said he used the smallest scope they had he wasn't comfortable pushing it b/c he... [ more ]
rachelraven Yep, it can happen. Twenty two years into it, I developed narrowing. Worst thing EVER... could barely pass gas, jut awful. My doc dilates under anesthesia, used a proctoscope. Thankfully, I remember nothing. [ more ]
jeane I am sorry to hear about your situation. I am not sure who did your scope, but a good GI or colorectal surgeon may be able to scope you with a smaller scope as Jan indicated. I have a stricture and my GI also uses very small scope. Typically what they try to do is stretch outlet where the stricture is either manually with their finger or if stubborn they may try a balloon dilation. Depending on the severity of it, it could take more than one dilation to help break it up. Did you have... [ more ]
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J-Pouch ForumsK-Pouch Korner
Sex and K-Pouch
SA Sydney AZ
Sydney AZ Thanks so much ladies! I thought about going to the gyno and getting an estrogen patch as well. Funny story I want to share and see if you experience this too.... I notice that when he is able to "go deeper" I hear a squishing/swoshing sound! Like liquid being swoshed around - it's only when he goes deep and I try and moan louder so he doesn't hear it! LOL Is that normal? I always empty before sex and on days I know I'm having sex - I hardly eat!! What is that??? [ more ]
JaniceM Yes, I have same. The nerve endings are very alive for me. Plus, the Kpouch sits next to the bladder which sits right there next to vagina..try to empty both bladder and pouch before sex (I know, planning sucks right?). Unfortunately hard penetration will send me to the roof so changing positions may help so you can control this. After menopause it is far worse from lack of lubrication and vaginal atrophy. If that is the case, then lube and/or estradiol tabs or cream can help although all it... [ more ]
liz11 sydney, see if you can get into see a urogyn at CC. I see Dr. Ridgeway and she is FABULOUS (Dr. Remzi is my colorectal surgeon), but booked out very far and is also gone in a few months for a few months. pelvic floor therapy may help too. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
I Don't know if I can keep this up.
XenophonXenophon
RickT For the sake of brainstorming, here are some other ideas that have helped me in the past. 1. I've consulted with a dietician that works at my local cancer hospital. She also a naturopath, but her extensive experience in working with cancer patients was helpful in helping me design my diet to work with my unique plumbing. Finding the right person can make a difference. The short advice - reduce consumption of foods that create gas, like carbs/sugar. Once the gut is agitated, it moves... [ more ]
liz11 also, have you been able to have a face to face followup appt at CC. I see you are quite a distance away, but if you do have pouch problems, it may be worthwhile to have them evaluate things for you and make recommendations. [ more ]
Xenophon Talked to Docs at CC and have tried adding in 4ounces of water with heaping tablespoon of fiber at bedtime. Did eat a banana at supper along with baked potato. No incontinence last night! The nurse was very reassuring and calming. I will try some of the above suggestions. What does the tincture of opium do? How do you take it? Thanks for the advice, had a much better night. Peace. Xen [ more ]
See all 9 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Fertility treatments needed?
KR Katie R
JillM You might be able to get the IUIs waived as I did - talk to your dr about it. If they think the egg and sperm aren't meeting from scar tissue, that doesn't get solved with IUI. If you do IUI, I strongly recommend that you monitor the fertilization process through ultrasound to reduce the risk of higher order multiples. So check prior to insemination how many follicles have developed to get an estimate of how many potential embryos you have. If you have 6 strong follicles of similar size, you... [ more ]
Katie R Thanks for the info. My insurance covers 3 rounds of iui before they will cover ivf so ill start with the iui and hope for results!! [ more ]
JillM I agree with skipping IUI. LIke you I had perfect HSG and my husband had no issues. Same assumption as your dr - scar tissue keeping things from meeting up. I was told the chance of success with IUI for "regular" people was 10% but for me they felt it would be about 1%. Add to that the risk of higher order multiples (they were ok with me carrying twins but not more), my drs recommended skipping IUI altogether. In my state IVF is covered if you do 6 IUIS but I got approval to skip over all of... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Need for CT plus Flex Sig.?
SavannahSavannah
Jan Dollar Here is what I would do: I'd tell them that you'd like to postpone the CT, unless your symptoms return. Have the sigmo, and at that time discuss with the surgeon if the CT is warranted. I agree that the CT adds to your cummulative radiation exposure, and it is an acceptable risk, when medically necessary. It should be based on your symptoms, not curiosity of your providers (or a desire to avoid future litigation). In my mind, the time to scan was when you were obstructed, not when you are... [ more ]
Spooky I would go by how you are feeling. I suspect your GP is looking for a structural reason for your blockage, such as a narrowing of the bowel, adhesion or even a twist (though that is less likely since your symptoms have resolved). If it's higher up a sigmoid may not necessarily detect this, though I'm not sure it's necessarily "dangerous" to have a sigmoid under the circumstances. CTs, IMO, are a lot of unnecessary radiation unless you are continuing to have symptoms. Of course, you could... [ more ]
liz11 Even with a partial blockage most people don't get CT scans. Most partial blockages are resolved at home.. liquid diet, moving around a lot, etc.. Its only a full blockage that generally requires more serious intervention and possible imaging. Even without that consideration what would the purpose of the CT be at this point in time? You had a partial blockage. It's resolved. Why be exposed to that amount of radiation if not needed. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
constipation after takedown?
K KeepFighting(Manny)
mgmt10 Yes, when I had the stricture it took me time to empty. And even after that was resolved, it took me a while to empty fully. I think it was about the year mark when things really adapted to how they are now. [ more ]
Pluot Marianne- in the beginning when you had a stricture? [ more ]
mgmt10 Liz, I was like that in the beginning too but now I can empty as fast as I can pee. [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
my period and butt soreness
FM Former Member
Gutless Wondergirl Like Bootstrap, I've found the 3 month birth control to work very well. MNGirl, I take Seasonique. For me the generic version did not work. I take the name brand which is pricey but worth it. Although I now only have to deal with my period 4 times a year instead of 12, I still have to deal with horrible butt pain during and after my menses. Arg. This most recent time, the pain (located on the left side and feels like it's about 2 inches in) has lasted longer so the doctor gave me Cipro... [ more ]
MNpoucher What kind of birth control do you use bootstrap if you don't mind me asking? I've been taking the depo for about a year since the pill doesn't work for me but my doctor suggested I stop since I've been having irregular bleeding. [ more ]
bootstrap The right birth control pill fixes all my menstrual-related issues. (It used to make my UC symptoms SO much worse.) Now I only menstruate every three months, and it is very short, very light, and brings almost zero of the typical period symptoms/effects like cramps, bloating, moodiness, etc. I might just feel a little tired the day I start, but that's pretty much it. It's been a total life-saver for me. Haven't had my takedown yet, but I haven't noticed any difference since J-pouch... [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
New symptoms
S Sandyj
Jan Dollar Sounds like pouchitis. While it is not common with FAP, it does occasionally occur. It is more likely to be a viral or bacterial gastroenteritis, as that is very common. You should probably call your primary doctor, and get a referral to a GI, or your regular one that you follow up with your FAP. Jan [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Iron Supplements
P phonix2g
vanessavy The best brand I have found is honestly the CVS brand of Iron. I tried it since it was the cheapest and it doesn't bother me at all. I get infusions though since supplements don't do anything for my Iron levels. [ more ]
mgmt10 I have to take iron supplements (I also have to have periodic iron infusions). They don't seem to bother my stomache. I take Fesol Bifera...it's a duel formula both Heme iron and non heme iron and its more gentle on the stomach....or at least it's supposed to be. Iron pills can certainly cause stomache discomfort in some people. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Acid Reducers
P phonix2g
vanessavy Maybe look into Prelief. Who knows... I know for bladder (IC) people swear by the stuff since it removes the harmful acid in foods. Might work for pouches too. [ more ]
Jan Dollar While it makes no sense to me either, there are those who had successful treatment of butt burn by taking acid blockers, like Pepcid or Prilosec. I would suspect it was because they also had some upper GI stuff going on too, so it was sort of an added "insult." Maybe dyspepsia causes increased bile production too. In any event, there is no harm in trying it. One problem with Questran is that it also absorbs other medications, so you have to be careful not to take it near any other medication... [ more ]
phonix2g Well that's what I would be looking for something to reduce bile acid if that's the stuff coming out the rear end causing the burn. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
1 year update
U 1970UC
ceew Great to hear positive post for this future J-Poucher. 8 more days hopefully. [ more ]
1970UC Hi Mike, 2 days sounds aggressive. i left the hospital on the 4th day. it is "minor" compared to the 1st 2 procedures. basically, they are removing the bag, sewing up the hole in the small intestines and dropping it back down into you body. for me, it took a day or so to have my system wake back up and start passing gas, then a day on liquids and then a day on solids and then went home. good luck! peace, mark [ more ]
Lesandiego Mike H. My doctor anticipated 3 days, but I was in the hospital 7-days. 20/20 hindsight, I would say my failure to stick to a liquid/soft diet for as long as possible could have been the problem. I remember throwing up a lot and running a fever. [ more ]
See all 8 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Getting pregnant with crohnic pouchitis?
J Joza
clz81 I managed really well with chronic pouchitis. I was using Cipro mainly prior to getting pregnant. I switched to Augmentin (probably your best bet for a safe and effective antibiotic you can take throughout), got pregnant, and took a low dose my entire pregnancy and 6 months of nursing. it basically stopped working for me at that point. i used flagyl once during the pregnancy toward the end, but it never really worked well for me. it is considered safe in the 2nd and 3rd trimesters as jill... [ more ]
JillM Cipro is generally discouraged during pregnancy as it is a Class C drug and they really have no data on it's impact during pregnancy. Flagyl is usually considered ok, preferably after 1st trimester, but I think some folks here took it throughout. As with any meds, the health of the mother is weighed against the potential impact to the baby. I would recommend managing your pouchitis with the least problematic meds possible, even now, so that during pregnancy you don't have to suddenly switch. [ more ]
Clicky I got pregnant with chronic pouch it's. I took mostly Augmentin (Clavulin) throughout. It was tough, I wasn't well, but now have a beautiful, healthy baby boy ! Good luck [ more ]
See all 3 replies...
J-Pouch ForumsPouchitis
Lower back pain and butt burn
L lab
Jan Dollar You sound like me a number of years ago, when I had active cuffitis and was finally diagnosed with enteropathic arthritis. Sounds like you have sacroiliitis, a hallmark of enteropathic arthritis. Would you say it is more upper buttock pain than low back pain? If so, then definitely in the sacroiliac joint. It can be one sided, both sides, or alternate. Pain is worse at rest. Fast forward to today. All under control after starting Humira, and now Simponi. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Feeling tired and light headed
B Bevscooby
Bevscooby I think cabbage juice will be really good for you. I have lemon juice on my cabbage but I suppose you can have anything with it that takes your fancy. My iron levels do get low from time to time and the doctor told me when having iron rich foods you must eat foods rich in vitamin C too. The vitamin C helps the body to store the iron as we can loose it quite quickly. I sometimes get the fresh green olives and sun dried tomato from the supermarket which is a good boost of iron. Olives are... [ more ]
Ikh good post, cabbage is good when things are established [ more ]
Pouch4Wf Any chance that you are dehydrated and all of the water in the cabbage is re-hydrating you. Thinking all symptoms point that way.... Try a sports drink next time and see what happens. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Eating fruits and fruit skins with j pouch
SavannahSavannah
dgtracy Had sushi over the weekend a "double dragon Roll" it had the seaweed wrap around it and spiraling into the center, had some celery and avocado intertwined, I am normally a Nigiri kind of guy but that roll was amazing and i tolerated it very well. made me feel good about trying more veggies and fruits later. [ more ]
suebear I eat copious amounts of fresh fruits and vegetables; I don't peel any of them. Try a bit and see how you do. Sue [ more ]
mgmt10 I eat all veggies and fruits. The only thing I have noticed is that watermelon "clogs" me up and makes it very difficult to empty. It's like me taking Imodium which I never take because then I can't go. I never peel anything. So far, no issues. I ate a huge portabelo mushroom last night at dinner and that will probably to the same thing to me (the clogged feeling) but I still enjoy eating them. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
nerve block
L liz11
vanessavy Yea nerve blocks are the BOMB! I am happy I go in a few weeks. I am a lot better for a few months after. Sometimes after going a year it can be permanent. They have , I swear, about 100 different types of blocks they do there. We talked about if all this didn't work that they can actually block the signals going to the brain with a different block but they do that last ditch effort. [ more ]
Scott F For some areas if the blocks work well they can do radio frequency ablation of the nerves for a more aggressive, usually longer-lasting approach. It might be worth asking. [ more ]
liz11 Had the first nerve block last week. Bilateral coccygeal. And wow.. I recommend it for everyone!!! I cannot believe how much better I feel. I really had no idea how much pain I had been in once it went away. But the procedure hurt like @#$$@#. He gave me a bit of versed. Numbing needle was not a big deal, but the main injections.. wow. Have to stay awake so they know they are in the right spot,.. even with the imaging. He said that because there was so much scar tissue.. that was why it was... [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Can a GP do a rectal exam to check for a stricture?
SavannahSavannah
Pouch4Wf My wife was in the hospital a few weeks ago. An "on-call" colorectal surgeon did an exam and determined that there was no stricture. Our experienced surgeon came in the next day and found an "extreme" stricture during endoscopy. No clue how the first surgeon missed it. I think the anastomosis (outlet) site is far enough in that it can be missed by someone who is really not experienced with the anatomy of the J-Pouch. [ more ]
Savannah Thank you so much everyone. You all said better to have my surgeon do the dilation if needed. This means I may want to have sedation for the exam which is to include a flex sig. I am kind of a soldier but I really don't want to experience any more pain in my anus/intestinal region. Everyone's knowledge, experience and authenticity on this site is so helpful. To those who regularly post and manage the forums a big round of claps and snaps. I have learned more here then anywhere else and the... [ more ]
mgmt10 I won't let anyone but my surgeon touch my butt! I had a stricture too and my surgeon took care of me. I wouldn't chance it. Let your surgeon do it. [ more ]
See all 6 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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