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J-Pouch ForumsPouchitis
Pouchitis not responding to flagyl or cipro, help please!
K ksmarisa
Jan Dollar Typically they do one then the other, then a combination of the two antibiotics. If they don't work, you can try Tindamax (similar to Flagyl), Levaquin (similar to Cipro), Septra, Tetracycline, etc. If antibiotics fail, then you look at IBD drugs, both topical and oral, then injectible. Jan [ more ]
ksmarisa Hi Jan, Thank for responding. I was worse when I took the flagyl on its own. The cipro has been better, but not like in the past. What would you got to next? [ more ]
Jan Dollar My rule of thumb is that if there is no positive result within 3 days, you need something different or something more. I would be a bit worried about a C. diff infection. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
loose stools years after, advice please.
M mumto3
Jan Dollar I am 18 years post op and my stools are still loose. If I try to make them too solid, my pouch does not empty as well. Fiber supplents thicken, but do not reduce frequency for me, so I don't bother with them. Since I have no continence or urgency issues, my 18 years have taught me to just not worry about it. Bottom line, you don't want the normal stools you'd have with a colon, but if it is pure water with urgency, you need to slow the gut. Jan [ more ]
Scott F Metamucil is what works for me. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Takedown 3 days ago. Bad gas pains and nausea.
A anuke76
Scott F The strong pain meds (opiates) frequently make people nauseous (in addition to slowing the gut). You don't say if you're on them, but minimizing the dose might help a bit. [ more ]
TE Marie You are up and walking and that is the best you can do to wake everything up. Your pouch is learning to do an entirely new job. This is why recovery takes so long. It's not going to be fun at first but it really does get better. [ more ]
jeane If it is an ileus and does not improve they may nose tube you so keep walking. The nose tube is not fun. You will get there. Good luck. [ more ]
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J-Pouch ForumsHelp! Need advice now!
partial bowel obstruction?
clz81clz81
skn69 Periods can wreak havoc on your body and pouch...the hormones involved send a message to the body to 'dump' so to speak, all toxic wastes, which is why a lot of women that I know who are chronically constipated wait for PMS to be able to go to the bathroom...it is the one week a month that they clear their whole intestinal tract out (I know, not a healthy way to live but that is what they do)... When I still had a period, way back in the pre-pouch days, I would be stuck in the bathroom for 7... [ more ]
Rodshunny I hate to say that I am happy to see a post like this because I don't...but it does make me feel better about my problems. I have had a pouch for 5 years now and for the last 2 years I have had that cycle of pain, pressure, bloating, partial obstructions, etc. It always happened the week before my period. No one believed me that it was hormonal in nature. Now that I have seen your posts I know that I'm not crazy. I have found that acupunture really, really helps! The only other thing that... [ more ]
Renee50 I'd noticed a similar pattern with my cycle and obstructions (though there are other issues likely contributing to my blockages, too). Going on the birth control pill continuously (having no period), definitely helped reduce the frequency. I know it's not a viable option for everyone, though... [ more ]
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J-Pouch ForumsPouchitis
VSL 3
C Chrissey86
Holly M I have been taking VSL#3 DS also basically since takedown. I too feel it works. I have had a few "flares" here and there but never been diagnosed with pouchitis. Usually take a round of antibiotics and all is well again. [ more ]
Subzeromambo I use VSL #3 DS. It took a few weeks for it to start working. For me, the combination of a very good liquid vitamin/mineral supplement combined with the VSL made a huge difference in my health and stamina. I have been using it for ten months. [ more ]
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J-Pouch ForumsGeneral Discussion
Nerve Issue Question- Flagyl
D dibelljw
TE Marie It's probably autoimmune but not IBD caused. I have neuropathy in my feet and the neurologist doesn't know what the cause it. Yes they burn, they get cold, sometimes it feels like I'm walking on marbles or broken glass, then are numb and all variations in-between. I have to use a cane when they are bad as I find it hard to balance. I'd suggest you see a neurologist. My problem was not caused by Flagyl, I just don't like to take it in case it could make it worse. You should check out with a... [ more ]
Mental Kase TE, Yes, the dose range for Gabapentin is really broad, as you say, some above 2,000mg/d. The tingling and numbness is really starting to get to me, some mornings it feels like my skin is burned? My feet feel like they have been scalded and it hurts to walk on them, it's crazy. This has all ramped up quite a bit recently but I haven't been on a steady diet of Flagyl for years so I'm hesitant to pin the blame there. Crohn's is a relatively new (last year or two, possibly longer undiagnosed)... [ more ]
TE Marie MK, I'm taking 900, 300 3 times a day. I was on 300 like you. I've heard of some taking 3200 a day. I don't want to take that much but am just including that so you know it's not as high as it sounds. It it were something like prednisone we'd be thinking NO Way that's too much! For everyone else, it all started out with things like cold feet, hot feet and hands, tingling, pins and needles etc. Then things got closer together and worse. Flagyl and antibiotics are not the cause of my... [ more ]
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J-Pouch ForumsGeneral Discussion
Seeing Dr. Shen
L Laney
vanessavy To me that is Cleveland Clinic in general. I called Dietz and never got a call back To this day and I was in the ER locally. not sure if it is the doctors or the idiots that drive me nuts at the front desk. [ more ]
fishon It also took 4 phone calls to get my biopsy results, which was 4 months after the pouch scope. [ more ]
vanessavy You have to really CC his assistant Geeta and she usually replies if he is too busy. Yes it is frustrating but do you know how many emails he has on his phone unread at a time? hundreds... Doctors are human like the rest of us. He works all day long. Best time to get a response is to email him on weekends and weeknights. He has an iphone to reply. Only time I never get a response is when he is out of the country. Geeta will reply though. time of day matter for sure when reaching out to him. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Diarrhea after Cipro
LS Lively Sloth
vanessavy C.diff is a different beast I think if you get it without a colon. I had it on and off for a year due to being on antibiotics. I didn't have cramping and only bled right before being diagnosed. Biopsy and scope didn't show it. Only stool test by PCR revealed I had it. [ more ]
Lively Sloth Thank you both for your replies! I was wondering about C. diff. but so far I have had no bleeding and no major abdominal cramping. I'm going to take it easy this weekend and give my GI a call on Monday morning if things haven't started to improve. [ more ]
Jan Dollar I agree with Jeane. Unless this turns around soon, you need to call your GI back and ask about recurrent pouchitis and C. difficile. If there is bleeding too, then it is even more likely it s C. diff. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
The worst 3 days of my j-pouch
ManchesterManchester
phonix2g Definitely sounds like a stricture. I had one for a little while and knew something was wrong. Always felt like I had the pressure like I had to go so bad and then get to the toilet and hardly be able to get anything out. This continued all day for days on end and yes it is painful I would avoid eating so I didn't have to go to the bathroom. What helped for me to eleviate the pain temporarily was a warm bath with Epsom salt and also sitting on a heating pad. I also would use beano and gas-x... [ more ]
jeane Sounds like a stricture or possible cuff inflammation. I always have a hard time emptying when my stricture is acting up and when the inflammation in my cuff is rearing it's ugly head, the stricture is always worse and emptying the pouch is a painful and very uncomfortable process. [ more ]
Nroley I have this too and I was found to have a stricture. I hope you feel better. [ more ]
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J-Pouch ForumsGeneral Discussion
Depressed after J-pouch--a mother's plea
FM Former Member
phonix2g I also battled a lot of psychological changes after my surgeries. It is tough to train your brain that this is your new "normal". It is as much as a mental as it is physical I think maybe even more mental than anything. I always had a laid back personality would never let anything get to me was always the positive one and could put a positive spin on any negative situation but things changed a lot after my surgeries. I'm a 30 year old male and it used to be hard for me to let any tears out... [ more ]
Chrissey86 Hi All, I too am extremely depressed i'm 27 years old, 26 when I had to have the first surgery. I currently am on cymbalta for depression and cipro and flagyl for pouchitis. I guess I just thought the reversal would be the light at the end of the tunnel that I needed, but after pouchtis and extremely bad butt burn it is really hard to feel that way. I just want to be able to go out for a glass or 2 of wine with the girls without having to run to the bathroom. Can someone please give me hope... [ more ]
Kia Oh, I forgot to mention....There are many posts on here about the mind/gut connection. I wish I could remember the one that mentioned there is recent research about this and that it ties in to our compromised ability to absorb. That being said, it is good to be aware this can be a two pronged situation. There is the trauma piece and the physiology piece. It may be the depression passes with time and/or short term treatment. Or she may find she needs on going treatment and/or antidepressants. [ more ]
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J-Pouch ForumsGeneral Discussion
Tired, so tired
T Teddybearlady
phonix2g Probably the worst and hardest part of my recovery process was being so tired all the time. It could be anemia which was my issue for several months after my takedown. I was so tired and lethargic that just pulling myself out of bed in the morning was a chore in itself. I would have to drag myself into the kitchen to force food down my throat and take my medicine before I could get a little bit of energy in me it was horrible. I had a home health nurse coming to my house and taking blood... [ more ]
mgmt10 It could be a number of things but get checked for anemia. Ever since my surgery I do not absorb iron well and I have to get periodic iron infusions. Have your thyroid checked as well. [ more ]
TE Marie It is a slow recovery process. Can you look back and see that you are feeling better than you were a few months ago? That's a good way of looking at your progress. Your body is still recovering from a major trauma. I hope you are feeling better soon [ more ]
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J-Pouch ForumsGeneral Discussion
Full blown obstruction
skn69skn69
Jan Dollar I doubt that an ultrasound would show anything either. It is less specific than most any test, unless you are looking at gallbladder, kidneys, or bladder. Might show a hernia, but not as well as a CT. If it is adhesion related, no test will show anything unless there is a current full obstruction. Jan [ more ]
skn69 Had the scan done and they found nothing of any interest but I am still having 'aftershocks'...occasional sudden, sharp abdomenal pain that just takes my breath away and stops me in my tracks... My GP wants to do a gastroscopy but I can't see how that will help me (only goes down to the stomach)...I suspect that I would be better off with an ultrasound. Wondering if I didn't somehow give myself another hernia? Pain is in the same spot every time, usually when I am active (walking uphill to... [ more ]
CTBarrister There are ways to make soft, tender matzoh balls. If you use too much egg they can become very hard. They key is do not use too much egg and cook hell out of the balls before putting them in the soup. If you are using a sparing amount of egg, and boil it for about 20 minutes, it should be nice and soft. Put one soft matzoh ball in the soup on the 3rd day, 2 on the 4th day, and so on and see how it goes. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Rectal bleeding after intercourse
A AliceMay
AliceMay Thanks for the replies, I must say I feel a lot better knowing it's probably a normal response after surgery. I think after years of suffering with colitis every time I see blood I think the worst. I will take your advice and contact my nurse just in case, will also try different positions and see what happens Alice [ more ]
Pluot I had the exact same thing happen to me between Steps 2 and 3, but it was only noticeable the first few times after surgery. I would probably say to double check with your surgeon but it's likely nothing. [ more ]
mgmt10 I have no issues at all in any position so I would seek out an answer with your doctor for peace of mind sake. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Levoquin antibiotic
T Teddybearlady
Teddybearlady No doubt. I had ulcerative colitis for 18 years. My colon was rotting inside out and outside in. I have had a happy j pouch for 11 months! But also have an adrenal gland problem. Fibromyalgia and arthritis. Autoimmune system is not good. I know the good, the bad and even the ugly. Getting one thing fixed, ie my colon out, has made weak tendons rupture, sinus go haywire, and adrenal malfunction. Oh well. I treat symptoms and conditions as life throws me more curve balls! [ more ]
Jan Dollar You probably don't want to hear this, but chronic respiratory disease s associated with IBD. Usually, this is lung and airway disease, but sinus involvement has also been identified. It is more associated with Crohn's than UC. http://www.ncbi.nlm.nih.gov/pubmed/12751702 Connie's son Thomas has battled chronic sinus infections for over a decade and it took many years before they made the connection. Jan [ more ]
Teddybearlady I have been sick for allergy sinus stuff for 7 weeks. Had sinus surgery 2 years ago. Sinus by X-Ray looked horrible. This is third round antibiotic, 2 shots double doses of antibiotic and steroid. Still sick. Cough stuffy. Frustrated. [ more ]
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J-Pouch ForumsGeneral Discussion
Fecal pills for C-diff--it works !
Minn MarkMinn Mark
Jan Dollar Yeah, I did have trouble finding an article that was specific enough about the release of the bacteria. Most were article for lay persons and they don't get into details like that, and for us, those details matter! Jan [ more ]
Scott F Fair enough, Jan. As long as it releases in the small bowel, it should work similarly for us, whether we call it "time release" or not. [ more ]
Jan Dollar I am not sure about that Scott. I think that the gel caps release in the small intestine, not necessarily a time release, so should be OK for those without a colon. But, I am sure it is an individual thing. "To make the pills, researchers processed the feces until it contained only bacteria, and then encapsulated the bacterial concentrate inside three layers of gelatin capsule. This ensured the pills wouldn't leak or disintegrate until they were past the stomach and into the small intestine... [ more ]
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J-Pouch ForumsGeneral Discussion
Do any of you not have insurance?
I iHateColitis
Scott F Actually there will ultimately be what are called "multi-state plans" in every state. Plenty of states have them already, though the complete rollout may take a few years. OPM is overseeing the multi-state plans (there's much discussion on RV websites, as you might imagine). http://www.opm.gov/healthcare-...-state-plan-program/ [ more ]
vanessavy I go to Hopkins and Cleveland Clinic. Nothing I would even consider good in NOVA area. I have one GI I had a scope with at Georgetown but that is out of state lines even. Easier to go to CC. For my disease I have to go out of state. [ more ]
Jan Dollar Gee, in the 40 years I have had health coverage, I have never had out of state coverage (unless it was for emergency care), so I don't think it is a rare condition of coverage. Sounds like a nice perk and I know quite a few people like to travel for care. Jan [ more ]
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J-Pouch ForumsK-Pouch Korner
Blog post about continent ileo tips
vanessavyvanessavy
vanessavy I have more tips that I need to add. I always remember things days after I write it out A young kid reached out to me who is having a kpouch done in NYC and I felt it was time to write something up, especially to help him out. Glad you like the blog. I try to blog 2 times a week. [ more ]
Dixie from Saskatchewan Hi Vanessa, I found your blog very helpful to me. Even though I've had my Kock pouch for many years now, there are still things to learn from others like us. I think I might try to look for the water bottle & nursing pads you mentioned. Thanks! - Dixie [ more ]
AlexanderC Great blog. Very informative. [ more ]
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J-Pouch ForumsGeneral Discussion
Internal Pain above my Incision and reconnection
P pmod122
Dog Bug your surgeon as much as you want/need to. Until you've recovered both physically and mentally, that reassurance can lift huge weights off your shoulders. I had insane cramps if I did ab exercises. Heck, I even had cramps that made me double over when. ..uhh. . .doing what guys do when they are alone and bored with a computer and an internet connection. Like Jan said, don't panic. Things take time to get all readjusted, stretched out, and for your brain to recognize what is normal and... [ more ]
Jan Dollar Sounds like adhesions (internal scar tissue). They can relax a little over time, but do not go away. If this cramping is constant like you say, you need to back off on your workouts and do more gentle, gradual stuff. It has been long enough that you should be able to increase activity, but not heavy workouts or abdominals, but everyone is different. It is possible that the ileostomy wound did not heal properly in the deep layers (muscle and fascia). You do not want to cause a hernia. So,... [ more ]
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J-Pouch ForumsHelp! Need advice now!
the worst pain in my life... Desperate
I Ikh
Ikh hallo; just wanted to let you know that today my doctors said it probably was adhesions syndrome; now I feel much better. Hope to completely eliminate this risk. he advised me some foods which create gas to avoid. [ more ]
Ikh I had a generic blood draw, where white cells were over count (13000); probably I had an infection which produced inflamation, ciproxin should treat it both if in the urinary tract as my doctor is thinking or intestinal tract if as the surgeon ssid could be pouchitis; I have to take cipro until sunday, today is wednesday, let's hope I'll be better until that time... [ more ]
Lesandiego Have the doctors done a blood draw to rule out any other type of problem that may not be related to your pouch at all? When I was doubled-over in pain, I had pancreatitis and that diagnosis was confirmed by a blood test. [ more ]
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J-Pouch ForumsGeneral Discussion
anxiety meds from GI doc??
OZOZ
Lindsey R. Yes, my GI prescribed antidepressants to me when I was going through a particularly rough time and my mom discussed it with him (I was a minor at the time). However, this was about 10 years ago. [ more ]
jeane My GI makes me get them prescribed from my GP. He has said since they are not GI related, he prefer the general practitioner prescribe them. this does not make much sense to me as they readily prescribe pain pills, but not xanax. I use this on occasion when I am having very disrupted sleep due to my jpouch function. [ more ]
PDXDavid Also, diazepam (Vallium) may be prescribed for rectal spasms. [ more ]
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J-Pouch ForumsGeneral Discussion
Family responses to sickness
MahshelleyMahshelley
kta When I had my first and only horrid flare, my regular doc was out for surgery. In spite of the fact I had never been a high needs patient, the docs and nurses would not take me seriously. I finally, after at least 6 weeks of trying, got someone to schedule a scope. They did it and immediately hospitalized me. So,while my family was helpful and supportive, my substitute docs weren't. [ more ]
KeepFighting(Manny) I'm lucky to have such a supportive family but in regards to having to deal with people that don't quite understand how we feel on the inside because it seldom shows on the outside, that was my problem with my employers pre surgeries... They always thought I was making things up about the pain and constantly accused me of ripping off the company because I was paid salary and would take days off when I was flaring real bad... I have yet to deal with pouchitis and I'm hoping I won't have too. [ more ]
skn69 When I got really sick and had my first big series of pre-pouch and k pouch surgeries my best friend dumped me. Big time. She was off living her life, graduating from high school, going off to Europe for the summer, going off to univeristy...she was doing what any, normal teenager should have been doing at that age; I was the abnormal one, locked in the hospital being cut to pieces...but it hurt badly that she dumped me. 10 years and a lot of water under the bridge later we met up again and... [ more ]
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J-Pouch ForumsGeneral Discussion
plasma donations
K KeepFighting(Manny)
Judy1 I was turned down donating blood after my surgeries. I think it was because I have FAP. That was 11 years ago so don't remember for sure. I do remember being vitamin B12 deficient too so that was probably part of it too. I think I'd be worried about giving to many donations. [ more ]
skn69 Manny, Is there nothing else that you can do other than donate your blood? I am sure that that is not the most lucrative of donations and sooner or later you will either run dry (figuratively speaking) or be refused for anemia...any work that you could do over the internet? Working from home selling stuff? I am not sure what is or isn't availible around where you are but selling your blood just scares me...after my long run of surgeries I tried to donate my blood and they refused me because... [ more ]
Jan Dollar I just looked and it appears that Arizona does not have any supplemental disability insurance to the Federal SSDI. That basically means that you are SOL until you are deemed permanently disabled, and the Federal assistance has a 5-6 month waiting period. At least it was the last time I checked. But, I believe the 12 month disability requirement is not from the date of application, but from when your disability started (when you became unable to work). I guess that is one reason why our taxes... [ more ]
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J-Pouch ForumsGeneral Discussion
About Eliminating Parasites
T Tat
Jan Dollar Does he think he has paracites, or are you just asking if it is possible? Sure, it is possible. Diagnosis is the same as those with a colon, with a stool analysis. Jan [ more ]
Scott F Tat- People with J-pouches can get the same parasites everyone can get. If your husband thinks he may have a parasitic infection he should see a doctor so the parasite (if there is one) can be identified and appropriate medicine prescribed. Why do you think he has parasites? That's not a particularly common problem with vegetarian diets. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Urgent help needed!
S sichelsea1978
TE Marie Over 8 Imodium a day will do you no good. Adding metamucil 3 times a day will help in the beginning as my surgeon had me do both in the beginning. Also eat the foods that are more thickening and not roughage like raw fruits and veggies. Calmoseptine butt cream, baby wipes and cleaning with water are the best. Dab with the softest TP you can find. IHMO it is Charmin Ultra Soft. Plus it is going to take a lot of time for your pouch to get use to doing it's new job. Time and... [ more ]
MJC Hi Simon, My J pouch is 20 years old and I occasionally still suffer from acid,painful runny stool. My stools had been watery all along and recently found that eating 2 Metamucil Wafers daily helps(sometimes I eat 4). My stools get a ribbon-like consistency that does not cause pain or irritation. If I stop eating them for a few days I notice the difference. For some reason, no other form of Metamucil helps. I also find that eating sweet potatoes (baked or microwaved, not fried) bulks me up. [ more ]
Goody2shoes Hi Simon I didn't find immodium any use (and was actually prescribed 40 per day and still no use...!!) Codeine phosphate has been great - doesn't make me tired (it may do until you get used to it) 60mg up to 4 times a day - and it really does help to thicken things up (or slow things down depending on how you look at it) [ more ]
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J-Pouch ForumsGeneral Discussion
Life is sooooo bad right now
JillyJilly
TE Marie Dear Jilly, Thank you for the update. It does sound up from your first post. The plan doesn't sound like Disneyland but it sounds like you have good medical professionals on board. It's too bad you feel like a big pill, I know just how you feel. There are days I skip my vitamins because I just can't swallow one more pill! Notice I pick the vitamins, I'm get so bad, Please keep us posted on your progress. You are sounding so much better. [ more ]
Lynne2 Jilly, Thank you for the update. I hate that you are going through this. You've gotten excellent advice above and, like I mentioned in your other post, I think the docs at UCSF are top-notch. You will be in excellent hands when you go there for another opinion. We are rooting for you and wishing you increased comfort and healing ASAP! [ more ]
Scott F Jilly- I'm very glad the meds have helped with the pouchitis and incontinence. It seems like you're pessimistic about tolerating them long-term. Do you have a reason to be pessimistic, or are you just exhausted? [ more ]
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J-Pouch ForumsGeneral Discussion
Fistula left me with two unclear choices for fixing
JS Joe S.
TE Marie Best wishes Joe [ more ]
Joe S. My surgeon gave me reassuring news. He is glad that I am starting remicade cause its the best medicine for fixing fistulas and putting crohns in remission. I was really worried about the surgery if remicade didnt work and he said exactly what you said spooky. That most people just live with their pouch and only talk about surgery when quality of life is really low. He doesnt see us talking about surgery for a long time, if at all, since this is just the beginning. Im not worried about... [ more ]
Spooky Sorry to hear that it is CD. Definitely, your options would change, but many people with Crohns keep their pouches and do just fine. However, your large fistula does complicate matters; depending on location this may affect the pouch. All the more reason to get in to your surgeon ASAP so you understand exactly what you are dealing with and what your choices are. With respect to the remicade, this is likely being prescribed to manage the Crohns as well. Again, I cannot comment as to whether... [ more ]
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J-Pouch ForumsPouchitis
Keep Trying Something Different!
J J.T.
clouseau JT, That is such great news!!! I love those stories. My pouch is about 21 years old and did extremely well until I was diagnosed with follicular lymphoma 1.5 yrs ago, then got pouchitis. Dr Shen put me on proctofoam, an enema, is that the same thing as cortisone enema? I did it for several months and really didn't see a difference. I'm trying to reduce my intake of antibiotics, normally cipro and tintazole(like flagel) which Dr Shen put me on and for the last couple days just did tintazole... [ more ]
Atop Joe Great news about the cortisone! Makes sense. My dr put me on budesonide which is a steroid but unlike prednisone releases in the ileum and does not travel throughout the body like prednisone (so the doc says) have been taking 1 3MG capsules 3x a day for 2 weeks with improvements but still major pain. I like your solution better and will bring this up with my doc. Have had pouch for 25 years , thinking seriously about getting it my pouch removed Anthony [ more ]
TE Marie Sorry I didn't see the probiotics portion of Joe's post Thanks for checking with Dr. Shen about using Anucort long term jeane I don't have any ulcers at the connection of my j-pouch but have chronic tail bone pain that varies. I was diagnosed with arthritis in my lower back that was "normal" for my age of 56, at the time of diagnosis, by my RA. Cuffitis, pouchitis, sitting for any time etc. causes the pain to be worse. I also have IPS. For whatever reason, since the surgeries my tailbone... [ more ]
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J-Pouch ForumsOstomy & Skin
Serious Skin Pinching/Pain After Eating
O oldmanFL
liz11 boyfriend, it does sound like it might be inflammation or adhesions behind the stoma. If that is the case she needs to talk to her surgeon. It may be something as simple as an in office dilation. If you or she thinks it is simply a skin or wafer thing, you could try an experiment by taking off the appliance and holding a bag or trash can nearby and see what happens after she eats. Maybe the wafer hole is too small? goodluck. keep us informed so we can help you help her. [ more ]
Rachel88 Hi Mike, I'm sorry your GF is having so much trouble. I'm wondering if she has been scoped since her take down? I had similar problems when I first had the bag, and also thought it was an appliance problem. It didn't feel like the same kind of pain as with the colitis or pouchitis. But, it turns out, I had a lot of inflammation still left in there. The reason for it is still unconfirmed (the biopsy came back inconclusive, of course), but I have been on a whole lot of anti-inflammatories... [ more ]
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J-Pouch ForumsGeneral Discussion
Takedown 4 days ago, gas pains today, help?
S Sburr17
TE Marie Super Digestive Enzymes by Solray or LifeExtensions are good for more types of foods and cheaper than Beano etc. Plus I thought they worked better. I rarely use anything like them anymore. Both brands are ok, they are clear capsules with herb like ingredients inside. Someone on here posting suggested them to me weeks after my take down and they were great. You can get them at Health Food Stores or at Amazon.com etc. [ more ]
Dog I second phonix2g in asking what's in your diet. If possible, drop back down to crackers and water. Be certain to eat! If you don't eat, I think that contributes to gas. Try and walk as much as you can, that should help getting things moving. One thing that worked for me in certain situations. . .you know how a puppy looks when it wants to play? Head on the ground, butt in the air? Yeah, go in the bathroom and close the door, but I found this position helped move gas to where it could. . [ more ]
suebear Gas X works on stomach gas; my surgeon said not to use it as it sticks to the small intestines, and it doesn't work for bowel gas anyway. Walking will help at this point; and eliminating gas producing foods (complex carbs) and carbonated beverages. This is a temporary problem and should resolve itself in time. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Try to keep rectum with j-pouch?
D DougF
Pluot As I said, only 1-2 cm of rectal cuff are retained in the current procedure (double stapled anastomosis). An adult rectum is about 12 cm so the vast majority is removed. It is not necessary to retain more than that to maintain continence. [ more ]
CTBarrister Some helpful illustrations actually from this board: https://www.j-pouch.org/Illust.html [ more ]
Mental Kase Hello, Recalling some of my A&P from the past; the Rectum is a muscular column roughly 3-5 inches long that leads to the Sigmoid Colon. I assume that in the construction of the pouch, the Cuff requires some portion of Rectum for attachment and internal sphincter control. How much Rectum is lost to the process probably varies but retaining much of that muscular body I recall is very important for continence. Correct if wrong. MK [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Dilation advice
AwwwwwCrapAwwwwwCrap
jeane Thank You for this useful information. This makes sense because that's the approach they take when they do a balloon dilation [ more ]
AwwwwwCrap Jeane, Apparently, I was only off by degrees so it would put pressure on the wrong area before the dilator kind of "popped" in to place. That is how I was creating an issue for myself. The doc taught me at the visit to barely put it in, pull back to kind of stretch our the anus before proceeding with rest of insertion. It has made a huge difference. Again, if you are having problems, I would go with your dilator to the doc and have him work with you to practice and show you. Good luck! Jen [ more ]
jeane Jan, Can you better describe this? I know my anastomosis is on a deep angle and I am not sure if everyone with a jpouch has this issue or not or if that contributes to my stricture and emptying issues. I have had several dilations in the office and under anesthesia and sometimes out of sheer desperation, I will use the glove approach and try and maneuver a finger into the pouch outlet to try and open it up and hold it there for a minute or two as my GI does under anesthesia. I am sure he is... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
food tolerance long term
K KeepFighting(Manny)
Dog I eat whatever I want whenever I want. The only real difference between before/after J-pouch is that those foods that give me gas really cause discomfort when stretching the pouch. So, besides gas causing more pain that my colon days, no real difference. However, the first 3 months post surgeries is a bit iffy as your system adjusts. Be sure to chew your foods a little better with a pouch. [ more ]
CeeeeCeeee It took awhile but for me I can eat/drink anything/everything. Every now and then there is some discomfort but after the culprit food/drink passes....the problem is resolved and so I don't exclude any food/drink I want! [ more ]
kta For the most part, I can eat and drink anything I want. I did, however, spend probably 6 months living on sourdough bread and bananas. I never thought those days would pass. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Tummy tuck
S sally85
CeeeeCeeee Not the same as your situation but about a year ago I had a hysterectomy and although my gyn surgeon wanted to do it lapro, he couldn't because I had too many adhesions. So, he opened me up along the same scar as the site used for my proctocolectomy and the results were phenomenal. Very little pain/discomfort and the site healed more quickly this time than I remember it healing after the first surgery. I, too, didn't realize they could re-use the same surgical site. [ more ]
sally85 Oh wow I had no idea that that was an option! My only worry is if they use the existing scar will they cause and damage inside with the small intestine? And my antenatal doctor said there won't be a colorectal surgeon when they do my c section and they'll call one in an emergency which sounds worrying [ more ]
skn69 Sally, You can ask your surgeon to use the exisiting scar for your C section...no reason to make you another scar...they used to do them up-and-down in the old days anyway...as for reconstructive surgery...it can be done at any stage of your life including during your C section...just talk to your Obs/Gyn and see if he can have a plastic surgeon there to close you up. Sharon [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Feeling Stuffed...why
A ActiveUC'er
ActiveUC'er Thanks for the suggestions. It's likely not a blockage as I was in the hospital last week and had a contrast CAT scan (I've had the same full feelings for awhile). No other signs of a blockage. Output is pretty much liquid as I have a loop jejunostomy. I'm no stranger to the ER so I won't hesitate to go! The dehydration thing is something I need to seriously consider. I'll try being "better" about my liquid intake. I hate ORS solution so I'll hit up some salty foods to help with absorption. [ more ]
skn69 Active, You could have a minor blockage...are you vomitting again? Is stuff coming out of your pouch? Generally, a full blown blockage (or occlusion) means nothing going in and nothing coming out but partial blockages can allow some stuff through and therefore you have stuff in your bag but still feel like you are stuffed...you might want to call your doc and see about having a scan or other exam to see what is going on in there... If you start throwing up again, go to ER... Another... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Imodium Multi-Symptom Relief
S Salmak
clz81 I like this product very much. I found it a couple months ago. It's the same amount of Imodium as the regular tablet with the added simethicone. I've found that many of my urges are really gas so this helps me a lot through the evenings. [ more ]
Pluot It's the same active ingredients as regular Imodium plus Gas-X (simethicone). There are many people here who use both, but I think it would probably be too little Imodium and too much simethicone relative to the usual doses for people with j-pouches. You're only 10 days out... have you tried drinking a little bit (less than one serving) of beer yet? I would give it a try without meds first just to see what happens. I'm about two months out now and thought for sure I would need Imodium in... [ more ]
Salmak http://www.imodium.com/products-imodium-multi-symptom product info if anyone is interested [ more ]
See all 3 replies...
J-Pouch ForumsOstomy & Skin
Skin irritation under the wafer
S Selma
Selma Thank you for the help. I will try the powder and will find me a wound care nurse if it persists. I did try the stoma powder and the steroid cream with the coloplast and it was better this morning when I changed barriers. [ more ]
ISeeUC You've tried number of things already, so I'd go to a wound care nurse and see if they can figure out what's going on. Assuming you don't have an infection, maybe try another brand of barrier wipe/spray? [ more ]
WinniethePooh I had a rash from razor burn, and the wound nurse gave me some antifungal powder that worked. http://www.amazon.com/Sween-Co...Powder/dp/B0002DM5C6 [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
suggestions for ostomy belt
ST shoot thru
chiromancer If the reason for the belt is security. I would try the Coloplast elastic barrier strips. I find they work better than a belt. They are two half round trips you put over your wafer flange on the out side. I have never had a failure using these and I am very active. My ostomy nurse suggested I try them. You can get free samples from Coloplast. [ more ]
kta My ostomy nurse chose the belt I used. I would speak to him/her. [ more ]
Pluot I think most or all of the manufacturers make a belt that is designed to work well with their bags/appliances. So for example I always wore Hollister and I wore a Hollister ostomy belt that was compatible with Hollister pouches. I don't think the ostomy belt needs to have any bells and whistles, as long as the material is comfortable, it fits securely onto your pouch, and doesn't irritate your skin. Your insurance may cover a one time purchase of an ostomy belt -- mine paid for one for me (I... [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Concerns about malabsorption.
RJGRJG
mary beth ❤️
marz Thank you for the information about forvia. I have ordered it. I just came from a visit and scope with Dr. Shen and he says I have SIBO ( cramping, abdominal discomfort--I have a barnett pouch). He said go on low fiber and low sugar diet, and take a vitamin!( along with 550 mg xifaxan). He didn't mention any specific diet, so I am going to see a dietician for help. The diagnosis came after he originally thought it was IPS, but nortiptyline and tincture of opium did not help after 4 months of... [ more ]
Txgal58 Hopeful, after a severe dehydration incident in March, during which I suffered some (thankfully) temporary kidney damage, the nephrologist who treated me in the hospital arranged with my gastroenterologist, for me to have hydration therapy once a week. If I didn't make a concentrated effort to drink 64 oz. minimum of Powerade or Gatorade it would probably be 2-3 times per week. I get a liter of fluid by IV. So far, almost 6 months and no hospitalization. That never happened last year. Ask... [ more ]
See all 44 replies...
J-Pouch ForumsGeneral Discussion
Questions about Healing after Dilation
P phonix2g
phonix2g Thanks I figured it was gonna take a little bit to fully heal after stretching out the scar tissue. Makes sense the first time around would be the worst. I just figured I might alter my diet because I have been eating quite a bit lately and have had a significant amount of bowel movements everyday which become more and more painful because I feel like I'm not giving the scar tissue enough time to heal. I've been patient for this long I can handle another week. Thank you. [ more ]
mgmt10 After my first dilation I was sore for an entire week. The subsequent ones were not as bad and I was only sore for maybe a day or two. But that first one was a doozy! I don't think I altered my diet during those days. It was life as usual. Drinking lots of fluids is definitely a big help. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Anal tear/bleeding
N Natalie-x
Jan Dollar Yes, this sounds like a fissure. They can bleed like that. Sitz baths and barrier cream are appropriate. But, if this isn't getting better in a few days or if the bleeding becomes more and more brisk, you need to see your doctor. Jan [ more ]
NJK put the nappy cream on only after you have soaked because trapped bacteria is bad news to a fissure. [ more ]
NJK soak in a sitz bath twice a day. Use a heating pad when sore. The doctor can provide you with a special cream that will speed healing. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Shout out to Coco bidet!
aka KNKLHEADaka KNKLHEAD
NJK I have the coco bidet, the toto portable bidet washlet and a manual bottle portable bidet. use to hate being away from the house now I can travel with no butt burn even after a week. Best purchases I ever made. [ more ]
kta I have had my Toto Washlet for 9 years. It gets used anywhere from 5 to 15 times a day. Last year I had to send it in for service which cost about 150.00. The thing has been worth its weight in gold. [ more ]
CeeeeCeeee My TOTO Washlet is the to me as your COCO is to you! [ more ]
See all 3 replies...
J-Pouch ForumsPouchitis
Is it ok to take 3 antibiotics at a time?
TinatTinat
CTBarrister White flour is right at the top of the list as far as foods to eliminate on the FODMAP diet. My GI has told me that my problem is SIBO and the SIBO is what is causing the pouchitis. People who say they can't sustain a low carb diet don't want to get better. I have sustained a no carb diet for almost a year now. Ask poster Vanessavy - it may take a year to reduce SIBO appreciably so if you are not in it for the long term, you are not in it at all. Everything I am saying here Dr. Shen and his... [ more ]
Scott F Most folks with J-pouches don't have SIBO, and do just fine with carbs. Nevertheless, it's true that someone with pouchitis may often get better results with a low carb diet than a bland diet, but a low carb diet is much harder to sustain. It is likely true that white flour works poorly in some people's bodies, but I think it's an overstatement to call it "poison." If people try what they can reasonably manage and pay attention to the results, they're likely to find their way. [ more ]
CTBarrister Rice and bread are horrible because they are loaded with carbs which creates a bacterial feeding frenzy in your bowels. Pouchitis in many cases is due to bacterial overgrowth. "Bland" does not necessarily mean good if your sugar and carb intake is high. If you want bread eat something made with nut flour. As far as white flour goes, it is poison and you should throw it out, if you have pouchitis/SIBO. Do not make the same mistake that other posters make in thinking that if it digests well,... [ more ]
See all 13 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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