J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
I agree, unless it was UC you had before the Jpouch it may be difficult to know if its a flare up of Crohns or Pouchitis. When my Colon was removed it was goodbye to the UC too so my Pouchitis was by default Pouchitis. But i have a friend that described to me his Crohns flare ups, omg, its a cruel thing to suffer for sure. Dioralyte is the go-to rehydration med for us in the UK and even with no flare up present Jpouch people will also benefit from using these drinks a few times a week for... [ more ]
Hi Marybeth, At one stage i was suffering with Pouchitis every 3-4 months. I do remember the sympoms were very similar to the ones you describe. Blood and often mucus in my 'winnie-the-poohs' was deffo the one certainty every single time. First ever Pouchitis i remember like it was yesterday despite being many yrs ago, the pain was immense! My gosh, my boyfriend actualy dialed 999 for an ambulance because i was in so much pain. The medications were 1 months antibiotics, Metronizadole and... [ more ]
Hi Marybeth, I'm 45 years old. had UC since I was 21 years old and after an aggressive flare up that last two years, to ended with a Jpouch (3 stages) since Feb 2014. The first 6 months with my Jpouch my life was ideal, with no issues, but after that "grace period" I'm being dealing with constant pouchitis, cuffitis and I start believing I have Crohn's. I was taking Cypro and seems to be working great for about 6 months but lately not much. My GI doctor wants me to try Cypro for 10 days then... [ more ]
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J-Pouch ForumsGeneral Discussion
excellent news Dianne. say as an aside, noting his gallbladder removal. I think ive discovered something at least for myself, perhaps others already know this but as ive struggled a bit with ischemic pouchitis in the form of nightly incontinence, I have noticed that the former admonition against eating late might not be relevant. how do I mean, well immediately after takedown the surgeon's advice is to not eat past x hour, leaving plenty of hours for your food to find its way to the jpouch... [ more ]
Jeff is doing much better! And he is coming home tomorrow! Birs been a long 2 weeks! [ more ]
Grace, thank you. [ more ]
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J-Pouch ForumsGeneral Discussion
Thank you Scott. Well stated. So here's the point: You can have a transit time of an hour (time from eating to bowel movement), yet have adequate digestion of nutrients. Digestion and absorption of nutrients depends largely upon the health and length of your small intestine, proper pH levels, and presence of enzymes and hormones. Slower digestion helps mediate spikes in blood sugar (important for diabetics). Slower transit time might allow for better digestion if your ability to digest is... [ more ]
Transit time is the time it takes from putting food into your mouth until its residue gets to the finish line. Digestion is the mostly chemical processes of turning food into molecules that can be absorbed through the gut into the blood. [ more ]
What is the distinction between transit time and digestion? [ more ]
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J-Pouch ForumsGeneral Discussion
Hi: When I had incisional hernia repair in 2012, my surgeon who has done by J-pouch and reversal did a plastics repair when closing...very much improving the huge scar that had been there. I was not that upset with it in the first place, but he seemed quite happy with the results. So he was a GI surgeon, not a 'plastic surgeon'. [ more ]
Thanks [ more ]
Just to add to Scott's note: while the insurance company does not care who performs a hernia repair, they are unlikely to pay the additional fee for a specialty surgeon. They will pay the reasonable/customary fee for a general surgeon, unless there is a specific need. Plastics coverage is generally reserved for facial repairs and hand/foot injuries, as they are considered medically necessary. Abdominal repairs with plastic surgery are considered cosmetic and are not covered. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Sounds like you are not emptying the bladder compketely, so are retaining urine. It could be from trauma/swelling around those nerves. If so, it should improve over the next few weeks. Never the less, you should report this to your doctor, as it could be an infection. Sometimes you can get urethritis from the urinary catheter used post op. The inflammation can cause bladder retention. Jan [ more ]
Thanks for the replies. There is no foul smell or odd color, everything is normal there. Just the urge to always pee. I will give it a little longer to see if it is just some swelling from surgery playing with my bladder. [ more ]
Before you begin to consume copious amounts fluids, cranberry juice or otherwise, ensure, that from your normal intake of fluids, whether water, tea, coffee or whatever, that you're able to pass water with good flow, without straining and no dribbles. If flow is good/normal and no uncontrollable stopping n starting, then you're good to go. After my takedown surgery, whilst still in Hospital, I developed an enlarged prostate, which with the catheter removed, I was unable to pass water, which... [ more ]
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J-Pouch ForumsGeneral Discussion
I'm 13 months out from takedown and at 10 months, my butt-burn (and other issues) *finally* receded! I have issues now when I eat the wrong foods, but overall I'm about as close to my new normal as I can be. So, hang in there. Unless you have additional health issues over and above, there is hope. I'm now feeling the best I've felt in almost 16 years. [ more ]
Your story, wow!! You have such a great attitude and thank you for that!! You have given great advise. Thank you for replying back. [ more ]
my pouchitis morphed from occurring about every 18 months to every 3 months. so my new doc, I had relocated to the west coast, clinically diagnosed me with crohns, wanted to put me on Remicade. Remicade back then about 10 years ago was a relatively new med and while I heard good things, I was also reluctant to go on a med for the duration. kind of got used to living life without meds. maybe why I quit the Metamucil too, I don't even recall making that active choice. anyways we tried rotating... [ more ]
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J-Pouch ForumsGeneral Discussion
Shen also put me on Tindamax. It was way better than flagyl for me!! I was on it for about 5 years with no side effects. I despise flagyl and all its yuckiness. Still no drinking alcohol but I never felt like drinking anyway when my insides were awry!! [ more ]
I cant take flagyl, the taste and ongoing nausea gets to be too much, Tindamax causes no issues for me. [ more ]
update for anyone curious. apparently Ornidazole is not available in the United States, much to the surprise of my doctor. So she wrote script for 2000mg of Tinidazole in a blast form, ie 1000mg per day for 2 days. The good news for about 5 days everything calmed down, I wasn't having nightly accidents, I actually decreased my frequency around the edges, and while clearly I could sense the metallic taste almost immediately after taking the 1000mgs each day, it wasn't overbearing and by day 3... [ more ]
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J-Pouch ForumsGeneral Discussion
Just a VSL coverage update for 2016: My successful VSL appeal had covered me through the end of 2015. I started new health insurance in January (thank goodness for the Affordable Care Act!), and they immediately denied coverage of my VSL #3 DS prescription. I appealed to the insurance company, and they again denied coverage. I filed a medical necessity complaint with the Maryland Insurance Administration (each state has an insurance regulator), and this time the insurance company caved... [ more ]
It helps my husband to stave off pouchitis. He takes it with the juice I make every morning. Also, our insurance covers it.. [ more ]
Not everyone gets benefit from probiotics, and some people do have a bad reaction. sudie, perhaps you have a dairy allergy, which is often a stronger reaction than lactose intolerance. [ more ]
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J-Pouch ForumsGeneral Discussion
lol that's great. [ more ]
Happy Anniversary [ more ]
Congratulations to both It is always great to hear good news I love the cake also [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
MGMT10 I agree [ more ]
I think because of all we have been through we tend to ignore pain and/or think it's no big deal. I know I'm guilty of that. Glad it's all taken care of with no issues. [ more ]
Glad that you are OK Gin, And yes, you are right...We live so close to our problems that we do not see any other possibilities... Stay healthy and heal Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks for the great replies! I repeatedly told them that I have no colon. I understand being cleaned out and if I don't eat and use an enema, that should do it. I'm just so hesitant to use any laxatives. I got a call back and they said that this is the prep they use on lots of people with j pouches. I said I'd do the enemas, but not the laxatives, period! So, we will see. Nora [ more ]
yikes. how experienced is your new GI with jpouches? that by itself might be the problem. that said, I have heard that CC docs, Bo Shen in particular requires a rigorous cleanse, as he apparently has had problems in the past. but I used to do as Jan did, clears the day prior, then a Fleet Enema the morning of. but my doc assured me that I only need to do a Fleet Enema so over time as I have to have frequent dilation pouchoscopys I have halted the torture of clears the day prior. its the ONE... [ more ]
I do clear liquids the day before and tap water enemas 'til clear before leaving the house. I've had some GIs tell me to drink mag citrate. It did not hurt me, but it was overkill. It sounds like the staff is giving you the standard prep for a flex sig. So here is what I would do. I'd call the GI's office back and ask for clarification FROM THE DOCTOR . Explain that you have no colon or rectum and are having an examination of an ileoanal pouch. Also explain that your surgeon cautioned you... [ more ]
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J-Pouch ForumsGeneral Discussion
Crazy1.... Only you can decide whether to opt for j pouch or not, however, from my own experience to opt for the J pouch was the best decision I've ever made. My surgery was carried out in 3 steps and each proceedure was via open surgery. My colon removal was an emergency proceedure due to a UC flare up years earlier. After recovery, it was believed I had Crohns rather than UC and therefore not a candidate for J pouch Surgery, although I believe such a mandate is no longer the case. After... [ more ]
My dehydration wasn't due to high output; I had a temporay loop ileostomy, which diverted my output away from my newly created J pouch, into the colostomy bag whilst it healed. Before J pouch surgery, my body had become accustomed to absorbing fluid via the small intestine albeit not sufficiently; now a proportion of my small intestine had been constructed into a j pouch and I wasn't absorbing a sufficient amount of fluids from what remained of the small intestine, regardless of what I was ... [ more ]
Strange:Sounds like a blessing in disguise, you having to get that IV drip. You learned what you were missing at that moment. It's always a risk that high frequency equates to excess electrolytes loss. Crazy1: This sounds like my story. I remember never wanting to risk having colitis or surgery issues again and refusing the jpouch. Why go through even more risk when the ostomy is enough, right? We all are different but I still thank my father every day for pushing me in the other direction. [ more ]
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J-Pouch ForumsGeneral Discussion
Hello. I am in Albuquerque and need j pouch surgery. I know u wrote this post a long time ago....but I would really love to ask you some questions regarding Dr. Brown. If you respond to this post I will send u my personal email. Hope I hear from you! [ more ]
Hi welcome to Albuquerque. My surgeon is Dr William Brown at the NM Colon and Rectal Surgery associates. He's great!!!! [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
thanks Jan [ more ]
I thought I responded to this, but I guess I got distracted before hitting the "post" button. Basically, as stated above, location is your best clue. The stomach is above the navel, the gallbladder under the ribs on the right, the j-pouch is low in the pelvis against the sacral spine. Pain originating in these areas will often have a localized effect. Sometimes, though, it is more vague. If the pain is more widespread, it is more likely to be a generalized gastroenteritis, like you get from... [ more ]
Yes to you two who've endured obstruction - have been there too - twice - and so glad to have survived it. Poucho - I think knowing if it's pouch pain or stomach pain is probably something you sort of figure out over time as Sharon mentioned above. I can tell the difference for the most part - three types: stomach, small bowel pain, and pouch pain. And, I've learned to try to describe the daily amount of pain as "discomfort" - did that in my head to survive all these years and it worked! [ more ]
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J-Pouch ForumsGeneral Discussion
thnx Jan - you're the best [ more ]
Grape juice is good for the pouch if you are looking for a laxative effect (similar to prune juice). So, it all depends on what effect you want. Either way, it is safe. Jan [ more ]
Isn't that something - I've only visited Paris twice and I'm thinking...this lady is living in Paris!! But, living anywhere is totally different than visiting. You are fantastic. I did my walking today with a friend and it sure helps - I can get out now as it is not hot. I usually have a good attitude about where I live - as in - "what can ya do" - how I ended up in Texas is a long story - but here I am and here I will be for foreseeable future. I think as I age....I feel like time is... [ more ]
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J-Pouch ForumsGeneral Discussion
Palm55152, Feeling better is the goal and I'm glad you are doing better I have never been told not to take antidepressants with any antibiotic and have been on many of them at the same time over the last 20 years. I've also needed to take prescription medications for years. I've had doctors of many specialties and have all of my medications at the same pharmacy during that time. I periodically go to on-line sites and enter all of the medications and supplements I take to see what the... [ more ]
well I was told by doctors as well as pharmacists not to take any antidepressants when on cipro/flagyl.I have to go back to the dr. have not done so yet as I am happy with my pain meds.. [ more ]
I agree - I've tried several anti depressants over the years and had a problem with only one - Wellbutrin - and that had nothing to do with pouch. Take Zoloft now and I think it helps - along with exercise, etc. - and also - lowering my expectations via cognitive behavioral/ meditation type thinking. I've thrown everything in the book at it over the years and if one thing stops ....I try something else. Sometimes changes are needed in meds or coping skills - the old ones grow stale, etc. -... [ more ]
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J-Pouch ForumsGeneral Discussion
I didn't really have reflux, but did find that PPI's like Prilosec changed my quality of life with a j-pouch significantly for the better. While there are long-term issues with PPI's, I have not experienced them yet. Perhaps only being on once a day has helped. I did go off PPI's for a month or two because of anemia - that was probably caused by NSAID's rather than Prilosec (since I haven't had issues since getting that resolved). So, if his doctor is okay with it, I would suggest taking an... [ more ]
I have acid reflux, and my ENT doc (who saw my inflamed throat and intermittent coughing) put me on dexilant. It seems like a strong drug with many side effects. It is relatively new. Is anyone here familiar with it? [ more ]
Zantac and Ranitidine are the same drug. Both doses (75 & 150) are OTC. [ more ]
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J-Pouch ForumsGeneral Discussion
great question, Grace. Or could we chew on celery stalks to get the juice and spit out the fiber parts if they bother us? Would that help? I meant to ask that too. [ more ]
Can you make your own celery Juice? Just wondering Grace [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks so much, I have seen my gastroenterologist and she says it is not unusual to have nausea after this type of surgery. We are pretreating in the evenings with compazine. She also put me on a probiotic. This seems to be working. She said they don't know why the nausea starts or why it ends but she does expect it to end on its own. [ more ]
Nausea is sometimes a sign of gastritis. Perhaps a few weeks of Zantac or Prilosec might be worth a try (I prefer Zantac). [ more ]
Could you be lactose intolerant? We only learned my son was lactose intolerant after he got his J pouch. [ more ]
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J-Pouch ForumsGeneral Discussion
new thread to me, so maybe I can offer some insight. my dx morphed to crohns about ten years ago, tried Remicade successfully for about a year and a half and then Humira, inject weekly, added small methotrexate (similar to Azathioprine described by someone else above) 4 years ago and have been better albeit not perfect since. It should help, will you be able to eat anything? I don't know, I don't each much fruit nor vegetables as they run right through me, but as opposed to others I can... [ more ]
JSUFFERER, Just so you know, this thread is over two years old. If you are interested on how it went, you may want to send a private message to weezyw, as there has been no posting by this member since then. I am not even sure she is following this thread. Jan [ more ]
I have the same weezyw. I suffered with misdiagnoses since I was a teenager then they said I had UC then medication stopped working and to fix it was to have a Jpouch. Had it in 2010 now I have been diagnosed with crohns. Frequent toilet, cannot eat so many foods I once did as they don't break down and also make me feel like I have razor blades coming through and eaten chilli. Used to live on gastro stop then stopped that and tommorow a nurse visits to start me on humira and how to use it. [ more ]
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J-Pouch ForumsGeneral Discussion
Kelsey - so sorry for how you feel. It is an awful feeling to think others are judging you when you post on this site - whether the other writer intended to or not - this is what you felt. I am a counselor- so step one for me is always really hearing what people are saying and validating "i hear you." I need that in my life and I have a few people who get that and as some have said, others I just had to let go of. I do have to cancel things at the last minute at times and I feel guilty and... [ more ]
Kelsey, please try not to take offense. Everyone here is sharing his own experience to try to help others and we're only going by our interpretations of posts. We don't always agree (I posted a similar plea as yours about two years ago and advice was direct and no nonsense, but it got me out of my own head and I learned a lot, hence, my ability to share here with you what I learned.) Some of us are sarcastic, some no nonsense, some funny, some caregiving, but ALL are well meaning with the... [ more ]
I was having a rough morning and read this string and all the responses. Thank you Jan, Sharon, Bill, Richard, Dewey, Scott, Lambie. Whenever I hit the site, like today, looking for some guidance or empathy, I always read you giving of your time and effort to help others with all of "this." I don't often post, but I have been helped by you, by proxy, and I just want you to know how much I appreciate you sharing! [ more ]
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J-Pouch ForumsGeneral Discussion
I think that should be fine. You just need to be eating gluten for a few weeks before the test. Hopefully, one day of gluten fasting should not matter. Antibodies should not clear that fast. Even if you are negative for celac, you can still be gluten intolerant, where you get the bloating and indigestion. That alone can add to your misery if you have narrowed areas from adhesions, just like lactose intolerance. But, it is still good to rule celiac out or in. Jan [ more ]
My surgeon ordered the test the day I dropped gluten from my diet and I went and had blood drawn the same day. I have had so many abdominal surgeries that I would stick to a low residue diet just to avoid more surgery. Thanks ladies, I do appreciate your help and advice :-) [ more ]
The only way I see a gluten free diet as possibly being helpful to prevent obstructions is if you have celiac disease. In that case, gluten actually damages the lining of the intestine and this can cause ulcers, strictures and obstructions. If you think this might be a problem, you should get the antibody blood test before going gluten free. If you are not eating gluten the test may show a false negative. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
My pouchoscopy is called flexible sigmoidoscopy and my insurances pay for it. [ more ]
Our *diagnosis* coding system changed a lot in the Fall. Our *procedure* coding system (at least the one that everyone uses) didn't change at all. [ more ]
When I am having cuffitis or pouchitis, the payment is much higher. Hint, hint. [ more ]
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J-Pouch ForumsGeneral Discussion
People get different symptoms with pouchitis. The most common ones I've seen come up here are increased stool frequency, urgency, and nighttime leakage, incontinence, or frequency. Some people get more systemic symptoms (e.g. Fever, feeling crappy), but I've never experienced that. Bleeding can occur but it's uncommon. [ more ]
Anthony, I am a US citizen-born and raised here and all too familiar with how expensive it is to get sick in the US! I think your idea about getting names of contacts in the Cincinnati area from your UK doctor is a great one! Certainly get all the names you can of anyone that specializes in Jpouches. Pouchitis, for me, is similar to UC but not as obvious. With a Jpouch, you have control so you may have cramping, gas and have to frequent the toilet but it's not every 5 minutes and you don't... [ more ]
Thanks again for all the replies guys, some great info! Yeah I hope it never comes to the point of having to use anything but always nice to know. If I do go back I would be travelling with insurance (I'm not sure how much j pouch insurance would be, hoping cheaper than UC cover!). It's nice to know that pouchitis treatment is cheap as from what I have read it seems to be the most common issue. In terms of pouch adjustment via surgery I would just fly home for that. Question for MSH98, are... [ more ]
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J-Pouch ForumsGeneral Discussion
Norvasc doesn't list urinary retention as a side effect, but it could be doing it to you (or the timing may be a coincidence). You could call your doctor to ask if you can try a different medicine, at least as an experiment. It's pretty miserable when you can't empty your bladder properly, but it's quite common. Getting older isn't for sissies. Good luck! [ more ]
Scott I think my new bp med Norvasc 5 mg has made it worse [ more ]
One way of dealing with this is to learn how to catheterize yourself, to fully empty your bladder. This is far from a perfect solution, but some consider it better than their alternatives. Do you know if any of your meds may be making this worse? [ more ]
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J-Pouch ForumsGeneral Discussion
don't know if you would find a local group per se in Portland. we are a slightly larger metro area and don't really think one exists here in SF Bay area. a local surgeon's ostomy nurse might be a resource. otherwise try pinging the local CCFA chapter? I know some people up in the northwest who I can ask as well. [ more ]
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J-Pouch ForumsGeneral Discussion
I haven't heard of that one, but I have enteropathic arthritis, which is an inflammatory arthritis associated with UC. I was diagnosed about 10 years after my j-pouch surgery, but I had symptoms a good decade before my surgery. It can cause accelerated joint degeneration. I have not had any joint replacements, but I have been on biologics and azulfidine since my diagnosis. Enteropathic arthritis usually does not lead to joint destruction, but it can if you have the chronic type. [ more ]
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J-Pouch ForumsGeneral Discussion
I take iron pills routinely. if I haven't taken them for some time, they will upset my belly ie stomach pain, and then I just take them with food. if you go to Feosol's website they and I suppose other places have excellent advice for enhancing iron absorption from taking with Vitamin C to taking on an empty stomach if you can, um yeah stomach it. also avoiding caffeine, dairy amongst other things including a PPI all of which interfere with iron absorption. but for the record it is very... [ more ]
I've been taking iron pills for a few months now and my iron level is still low. Foods fortified with lots of iron don't help either. [ more ]
Iron is mostly absorbed in the terminal ileum (ie the jpouch) which now largely acts as a reservoir. Therefore, iron is not absorbed as well. Heading for my first iron infusion in two weeks because my haemoglobin keeps dropping can't wait for an energy boost! [ more ]
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J-Pouch ForumsGeneral Discussion
I have issues with iron as well. I tried going the oral iron route but it didn't help at all. I started seeing a hematologist a few years ago and we decided infusions were the way to go. So he checks my levels every 4 or 5 months and if I dip too low we do an infusion or two to keep things in check. It's helped tremendously. The downside is my insurance deductible is quite high so a lot comes out of pocket. Definitely try different oral iron pills first....you may find one that works for... [ more ]
I have also been anemic on and off. I seem to have had the best luck with ferrous fumarate 100 mg supplements in bringing my levels back up. I used to take the Palafer brand name, but now I take a generic (Life brand) as it is much less expensive. I take it right before bed, as recommended by a pharmacist years ago, and which has remained very sound advice. There are few side effects that I've noticed, aside from a temporary darkening of the stool. The stool can be black or even very dark... [ more ]
I also have low iron levels I have been taking a chewable Vit C 500 mg and B12 5000 mg dissolves under tongue I buy them in Cosco Kirkland brand They seem to help I take them in the morning after eating breakfast. My blood work has been better since taking them. I also take multivitamins, magnesium and calcium. and also vsl#3ds in the morning. I do try to drink a lot of water I also take a lomotil about 1/2 hour after taking vitamins every day. That helps me get thru the day I have been... [ more ]
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J-Pouch ForumsGeneral Discussion
My Rx for my trauma related injuries was oxycodone-acitaminiphen 5-325. Suggested dose 1-2 tabs every 4 hours. Since I would only take 1-2 all day, I could stretch the Rx to last a long time. I did not have to visit the doctor for refills, but I would have to go to the doctors office to pick up the script. Major pain in the rear when you are in a wheelchair. The regulations and control they put on narcotics really hurts the people who need it and pushes others to the streets to find other... [ more ]
It depends on the dose, from what I understand. Has to be less than 90mg per dose to be schedule lll. Otherwise it is in schedule ll and under the same restrictions as hydrocodone and oxycodone. http://www.dea.gov/druginfo/ds.shtml Jan [ more ]
Codeine is in the same legal category ("schedule") as oxycodone, except when the codeine is below a dose threshold in a combination product (e..g. Tylenol with codeine) [ more ]
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J-Pouch ForumsGeneral Discussion
After 3 1/2 year of chronic pouchitis I had my j-pouch disconnected and an end ileo created. I continued to have problems and at age 31 had the pouch removed. The best decision of my life. I have not had a single GI issue since (and that was 13 years ago this April). I have had two babies and I live a very normal life with no drugs at all. Happy to answer any questions - best to PM me so I get an email as i don't visit her often. [ more ]
MaryL, I suggest that you have a good discussion with your son’s GI about the repeated infections that he is having and perhaps get a referral to a doctor who specializes in treating those conditions. Another thought is to get a thorough medical examination at some place like Cleveland Clinic that routinely deals with complex medical problems. While going to the bag is an option, I personally would attempt less drastic measures before taking that route. If it finally comes to removal of his... [ more ]
I'm sorry, I hate being held hostage by insurance! I hope he gets well ASAP ps I got hit with that stomach virus. I also ended up in the ER and it took almost 10 days for things to settle down. I spent close to 100 dollars in cvs on every anti diareah drug and popped so many things at once and it still was literally running out of me. [ more ]
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J-Pouch ForumsGeneral Discussion
I'd listen to Jan! Also, my sister went through this period where she had a bunch of fibrous tissue in a big lump under her pouch - caused strictures and all kinds of issues - no one could rx the problem for 3 years - until C. Clinic. Jan also knows a lot more than I do about all the different kinds of scar tissue, etc. as does Scott. I have no idea what kind of adhesions I had throughout the years. I hope you can get this fixed! We are pulling for you! [ more ]
Anal stricture and stenosis are the same thing. If the stricture is so fibrosed that they cannot safely dilate it or it just springs back after the stretching of dilation, they have to do a surgical repair. Sometimes a simple sphincterotomy is effective, where they just cut the stricture and hope it does not reconnect. If the fibrosis is really severe, it might require complete removal, which amounts to pouch advancement surgery. If it requires anything more than a sphincterotomy, I'd want a... [ more ]
"Scar tissue" can mean some different things. In this case, from what Deedeeh has written before, it's probably not adhesions. It sounds like a stricture that might require something more aggressive than dilation. It's important to find out exactly what they propose to do. Sometimes they remove a *short* section of intestine that is strictured and create a brand-new anastamosis. I'd be fussy about my surgeon if that's what they are proposing - it's a bigger deal than a dilation or six. [ more ]
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J-Pouch ForumsGeneral Discussion
I think it's all on how late u eat, if u don't want to be getting up at night don't eat too much before bed. I can usually sleep all night but if I ate a lot that afternoon certain things I know I will b getting up during the night. So I think if your husband stops eating late it will definitely help. (: [ more ]
Just glad to hear that I am probably normal. My pouch is almost 20 years old and I have always gotten up at least once every night. It's annoying, but just part of my life now. I try to be grateful even when times are hard. So I am thankful that at least I wake up when I have the urge to go. C-jay [ more ]
I've had my j pouch for five years now and most nights get up once to go. Seems once or twice is very common. Just the nature of the beast. Luckily I always fall right back to sleep. I have found what I eat or what time I eat it has little to do with it. [ more ]
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J-Pouch ForumsGeneral Discussion
I got autoimmune inner ear disease, v rare [ more ]
diphenhydramine is the generic name for benadryl [ more ]
It's great you are making it through the work day well. Hopefully you don't go crazy and over do it like I use to. I have a nasty view of steroids and it's just because of what the devil prednisone did to everything else in my body and mind while fighting back my UC. As I said above, I am using a prescription steroid ointment around my eyes and it works well. I take my daily antihistamine before bed. Maybe you could do that. I don't know what Benedryl's generic name is but my former PCP, who... [ more ]
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J-Pouch ForumsGeneral Discussion
Metamucil will give you a slightly more formed stool. If you try it and like it, then keep using it. If your untreated stool works fine for you, then don't bother. [ more ]
@LHOLDEM The problem was that I actually started feeling better or even good again and the problems still were going on. And furthermore, after a longer while, they came back But it seems like it's taking more time to become normal again. That's what I have learned from this situation. Which probiotics do you use to support your body getting better sooner than later? @JAN Yeah, obviously they are for people with a colon But as there are no information about the situation for people like us,... [ more ]
Here's the thing. Package inserts are mostly applicable to the general population. Specifically, Metamucil instructions are for those with a colon. But, even for those with a colon, it is prescribed to help with diarrhea and bulking the stool. For us, the effect is sooner and the actual timing depends on your specific transit time. Think more around 2-12 hours instead of the 12-24 hours. It does not really slow the gut, but if you have strictures, too much fiber can clog you up. If you have... [ more ]
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J-Pouch ForumsGeneral Discussion
Monday's announcement included lyrics to the following song: “It's Your World Now” Written by Glenn Frey and Jack Tempchin From the Eagles’ Long Road Out of Eden album. "A perfect day, the sun is sinkin' low. As evening falls, the gentle breezes blow. The time we shared went by so fast. Just like a dream, we knew it couldn't last. But I'd do it all again If I could, somehow. But I must be leavin' soon. It's your world now. It's your world now. My race is run. I'm moving on like the setting... [ more ]
I previously posted about him in another thread, but keyboardist Nicky Hopkins was another famous musician who died after surgery for IBD (Crohn's Disease) - at age 50 in 1994. He did a lot of session work with the Rolling Stones and Led Zeppelin and might have become a permanent member of one or the other of those groups or the Yardbirds but for his Crohn's Disease. He was unable to tour because of the illness. More about this here: https://en.wikipedia.org/wiki/Nicky_Hopkins My favorite... [ more ]
As someone who almost died from UC myself, I have firsthand knowledge that UC can be a fatal disease. We don't know the extent of the complications Glenn Fry had, but UC aside, surgery itself--almost any surgery--always brings with it a risk of complications or death. (We know. We've all signed those forms in the hospital.). Also, as Jan said, pneumonia is unfortunate complication of surgery and hospitalization in general. Being aged 67 and in generally frail overall health from UC and other... [ more ]
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J-Pouch ForumsGeneral Discussion
B12 injections can be given either subcutaneously or intramuscularly. [ more ]
I was prescribed Nascobal, it's a B-12 nasal spray and it got my levels up to normal. I was injecting 1x week but doing subcutaneous injections instead of IM. Can anyone with experience injecting B-12 clarify whether it is injected subcutaneous or intramuscular? [ more ]
It varies person to person. After nearly 20 years I became B12 deficient. Oral supplements brought my levels right up, and I even have chronic pouchitis now. My husband, same age as me, also was deficient in B12. He has no j-pouch, but does have UC in remission. He responded well to oral supplements too. But, first step is to be tested. Then you know what you are dealing with. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Your description reminded me of when I had a fizzure. It seems silly to not diagnose that, though. In addition, I wonder if you have been given any pain meds. There are times when I would not have been able to function without them. Where do you live? Can you make it to Cleveland Clinic? [ more ]
Ferguson, this could, perhaps, be an anal fissure from your description. Has that been considered (or ruled out)? They can be difficult to manage, but in addition to sitz baths there are medical treatments that can help: nitroglycerine, nifedipine, and even Botox injections. The yeast grows in continuously damp conditions. If you're putting a barrier cream over a damp area (e.g. from wet wipes) you're likely to run into trouble. In addition to whatever antifungal you're probably using, I'd... [ more ]
Hi Ferguson, First off, I am so sorry...this is all wrong in so many ways...wrong that you are in so much pain and wrong that they have not been able to diagnosis it... So here are my 2 cents. 1 Have they asked you exactly what Kind of pain you are in??? There is actually a classification chart that lists: http://projects.hsl.wisc.edu/G...ment/session2.4.html Which can help them to understand the origins...the word 'pain' means nothing to them in and of itself...they need to know what kind. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Had my J-Pouch done in 2001. I had been suffering with the "Butt Burn" since that first bowel movement till this year, 2016. So much so I should have bought stock in Calmoseptine considering how much I've been through. That never really cured the pain at all. After all those years I purchased a simple attachable bidet system for our regular toilet. Nothing fancy, has a dial you turn to clean you and one that cleans the spicket. Thought cold water would be a problem , but its a God send. So,... [ more ]
My surgeon told me butt burn and itching (frequently at the same time!) is usually exacerbated by leakage/seepage even if we can't see it! So, trying to thicken things (I eat oatmeal at each meal for awhile and/or take Metamucil once or twice a day) to thicken things up. I also use Calmoseptine and I make sure to include placing some inside just a bit, as well. It may burn at first but seems to really soothe and heal my irritated skin. After a few days I'm usually good to go for quite some... [ more ]
Oh, yes; the opium prescription is quite difficult to obtain. It took several visits, multiple other medications and escalation to the top specialist in this field. Six months of diarreah!! At that, it can only be for a two week supply which will require bi-weekly hospital visits to refill. It truly was a last resort. My wife and I are finding (she has high blood pressure) that many US medicines simply don't exist here. mike [ more ]
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J-Pouch ForumsGeneral Discussion
As a Dad my heart goes out to you, it's very difficult watching your kids suffer and not being able to help. My very active and able son lost his ability to walk last year at 12 years old and the Neurologists dismissed it as being all fabricated in his head....ended up his brain was putting pressure on the spine disrupting the flow of spinal fluid. Doctors will be Doctors, but the ones that are good are life savers and change the whole experience. If you're not getting that then keep... [ more ]
You don't sound grumpy! It IS so frustrating when you keep dealing with symptoms and no answers are forthcoming. Very hard to watch your loved one suffer. If you keep getting the "he's fine" answer - and he clearly is not improving - perhaps (I know it's awful to go through the process) change doctors - is he going to GI person or his surgeon. I've found GI (medical) people much more helpful in dealing with issues through the years with my pouch. If it gets truly awful, I vote for the... [ more ]
This may not be helpful......maybe try a new doctor. Like my brother said....some doctors graduate at the top of the list some at the bottom. My doctor is in Seattle. Dr. Steve Medwell....he is tops in the field....I pray for answers and relief..... [ more ]
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J-Pouch ForumsGeneral Discussion
I had the same thing, before the j pouch was built and after it was built prior to connection. My surgeon said it was normal and it was good, meaning the intestines were moving things thru. Once he told me that, I quit worrying!! Nora [ more ]
Ever consider the fact that you are older now, compared to your first pouch surgery? Plus, you probably had your complications arising early on the first time. I would think that this different experience is affirmation that you are not repeating the first scenario. If your surgeon is not concerned, you should not be either. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Hi, been using codeine phosphate 6/8 day for at least10 years to slow bms. Have liver tests 6 monthly, so far so good. Lomotil /immodium had no effect on me so changed to Panadeine Forte. Hope this helps. Heather [ more ]
It comes in 30 and 60mg pills. Typical adult dose is 30mg. Like anything, start small and gradually increase your daily dose to what works. No more than every 4-6 hours. Another drug to consider is paragoric, which contains all the opiates and is specifically for treatment of diarrhea. I never had problems getting opiate prescriptions from my doctor (my primary doctor would order it). It was just a big hassle for me. I had to keep close track of my supply and put in the request a week or two... [ more ]
I'm in year 5 of my J-Pouch. I currently take Tramadol and it works just ok, but I would like something better. I don't think getting the med will be an issue as I was lucky enough to have a Dr. who's son also has a J Pouch. So he completely understands the pain med purpose. I tried lomotil and Imodium and all I got was dry mouth. We started with Tramadol but haven't ventured further. As for the codeine phosphate, what is a normal dosage and how many bowel movements could I expect in 24... [ more ]
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J-Pouch ForumsGeneral Discussion
I don't think you're likely to get a long-term benefit from a short-term treatment. For the short term a round of prednisone would be simple and effective, but I'd be surprised if the effect lasted. [ more ]
I don't believe the ulcers are cleared up with antibiotics. I've been scoped shortly afterwards and they are still there. Another question re. meds - do bigger guns (such as remicade, I assume) work short term, or does one have to be on them forever to keep ulcers away and the mucosa clear? [ more ]
You're already employing mesalamine directly to the affected area with Canasa, so additional medications would probably be bigger guns that Asacol/Pentasa (note the "ASA" in all three names). Do you know if the ulcers clear up when you are treated with antibiotics for pouchitis? [ more ]
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J-Pouch ForumsGeneral Discussion
Trudy, I had bilateral total knee replacement back in 2009. At that point, I was in my pouch's 23rd year and was 46 y.o. As I had both knees done simultaneously, my mobility will be less than yours. That said, expect that you will have an accident or two. You'll be fairly zoned after the surgery so you might not be able to control your sphincter/bowel movements like normal. The meds will play a role as well -- hard to predict ... they might slow you down, but also decrease control. Net,... [ more ]
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Founder, Creative Director & Web Master
William J. Johnson
bjohnson@j-pouch.org
Bill Johnson founded the J-Pouch Group in 1997.
After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.
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Jan Dollar R.N.
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