J-Pouch ForumsHelp! Need advice now!
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J-Pouch ForumsHelp! Need advice now!
Hi there! My number is (918) 639-8495 . I live in midtown area. And you? [ more ]
I have a j-pouch, created 1999. Dr. Craig Johnson was my surgeon and he said he'd be my follow-up doctor from then on. So I don't have a GI. I'd love to be in contact, PM me your info. [ more ]
Thank you both for your recommendations. I will follow up! And, Tulsa Mom, do you have a J pouch? I’d like to converse with you. Who is the GI that you follow up with? Thanks again all! Tracy [ more ]
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J-Pouch ForumsGeneral Discussion
Hope your take down goes well! I also had the enema to verify nothing was leaking before the takedown surgery. I can't think of any questions to follow up with your surgeon. I don't remember when I started practicing kegel exercises, but you might consider that at some point to help regain "muscle tone" down there. [ more ]
Yeah, the CT scan/Contrast Dye procrdure, which was a separate procedure to the barium enema, was instead of an Endoscopy; infact, during the entire procedure, from admitance, j pouch creation and takedown, I never had an endoscopy once; unless it was performed whilst I was sedated during surgery. [ more ]
I had the barium enema with contrast but didn’t have to drink anything. It was pretty easy from what I remember. I did not have the endoscopy with mine. For me,there was definitely butt burn after takedown. I was fine with Calmoseptine and got a bidet as well. I invested in a sitz bath and used it a few times. The butt burn subsided after a while and haven’t had any issues with it for a while. I had my surgeries in three steps and takedown just before I turned 62. It’s been almost 3 1/2... [ more ]
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J-Pouch ForumsGeneral Discussion
Best advice after takedown (in my opinion) is to not let the butt burn get out of control. Some skin barriers work for some people and not as well for others. I tried Cleveland Clinic's special paste (just OK, not great), Calmoseptine (better than CC's paste, but also not great), Desitin, Budreau's Butt Paste and others. The only paste that worked for me is iLex and I still use it 15 months post takedown. My insurance also covers the cost -- ordered through same medical company as my... [ more ]
CTB23 and Winterberry: Thank you so much for your tips and encouragement. I will follow your advice and I am now more optimistic. Nick [ more ]
Hi, Nick. If you are prepared with supplies, and know what to expect, you will be okay. You will probably experience frequency and resulting butt burn, but it will get better. As soon as I got my frequency under control, it was so much better. I wanted to try managing my consistency and frequency through food. I ate a lot of pasta, but no tomato sauce during recovery -- too acidic. Sweet potato, white potato, peeled roasted zucchini, cooked spinach, white rice, chicken, lots of fish, one egg... [ more ]
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J-Pouch ForumsPouchitis
I’m on rotating antibiotics, cipro and metronidazole monthly and then a month off. I’ve stopped diary and cut down on fatty foods dramatically which has def helped also eating little and often and started eating slower and not eating too late at night. I def feel for you and hope things get sorted really soon [ more ]
Pysillium Husk in it's natural state will help; start with a small amount in juice. Then a bit more; gradually. [ more ]
The things I do to cure any ailment now is to fast for long hours specially when my pouch is rocky. The butt burn, excess gas and cramp in the stomach I had them all . I am sure it was pouchitis. But I didnt want to go back on antibiotics ever so I fasted for 20 hours straight. I wouldnt say it all healed up in that one time but I was relieved. I do intermitent fasting upto 14 hrs so thats helping this alot. Also I eat loads of bananas when I have a rocky day. I'd hate to say it but stay... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsHelp! Need advice now!
Yes our j-pouches grow. I think it is normal. I'm glad she is going to do a scope. Lets hope she figures out something to give you relief! [ more ]
The Pouch expands but only in the first year or so after surgery, not 20 years after surgery. When I had surgery I was specifically told by my surgeon to resist the urge to defecate and hold my bowel movements as long as possible in order to stimulate the Pouch to expand. I thought this was a pretty fundamental standard drill with anyone who gets a J Pouch. In any event it isn’t really clear what is meant by the comment that the Pouch “has grown.” There is a period of natural growth and you... [ more ]
HI all. I just had my consult with the 2nd surgeon--not a lot of good news but she was at least very compassionate. She is going to do another scope herself to see if there are any weird angles etc. above the pouch that could be causing the obstructions. It is interesting how the scans I've had are interpreted differently (others that were said to be clear, she said they were not and showed various things that were a bit odd). She also mentioned my pouch looked like it had "grown" since... [ more ]
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J-Pouch ForumsHelp! Need advice now!
You don’t need to have the other symptoms for there to be some inflammation. That is how it starts. Nighttime incontinence. The other bad stuff comes later when it doesn’t get treated. That is what usually happens - Pouchitis gets out of hand when initial warning signs get ignored. It’s a huge red flag and if it doesn’t get better in the next 2 weeks it should be strongly suspected. [ more ]
I can try the Depends for Men. I thought that might be an idea and have a new package of the ones for women to return anyway. As far as pouchitis, I don't have any of the other symptoms, but I see the doctor in two weeks, so I'll see what she says. [ more ]
I agree with Still Standing- definitely a sign of untreated Pouchitis. I also have used the Men’s Depends Underwear. I think it’s 19 per pack and I always have a stock at home in case they are needed. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsMen's Health
I was diagnosed once with little crystal not exactly stones though. The doctor asked if I could drink alot of beer to clear it up and I did. Its funny coz I'd drink 2-3 bottles just to pee hard enough to get those crystals out of me. I did this 3-4 times. On my next visit I was clear of stones. But my doctor told me it wasnt permanent solution and asked me to increase my fluid intake to prevent stones in future. Also he asked me to stay away from spinach, beetroot and tomatoes , though I... [ more ]
The only thing that I can suggest to help prevent kidney stones is to cut back on drinking tea and eating chocolate, both of these items containing oxalate which binds to calcium and forms stones. [ more ]
I have been taking Allopurinol (4 100mg tablets/day) for over 8 years to prevent recurrence of gout. This medication has not had any affect on my pouch. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I appreciate your input RAJ. I just saw a doctor this morning and was diagnosed with an abscess. She lanced and drained it and because it was less then 2 cm, she didn't send me home with any antibiotics...Really painful now that the lidocaine has worn off...Hopefully that's that!? [ more ]
My friend has a a hernia for 6 years now. He was even asked once by his doctor to get it operated and put a mesh to fix it. He chose not to. We both have been working out in gym together for long now and he's a heavy lifter. He uses all the cautions like workout belts and supporters. He also told me certain yoga poses that help him keep the hernia in check. Also on days he has to lift too heavy, he puts a warm pad on the site for 1hr before going to bed. I think you should atleast see the... [ more ]
Hi Scott. I haven't seen any doctor. Mostly because the pain was so ephemeral. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I started eating solid food far too soon, at the 2nd week mark. Ate a plate of cooked vegetables and other fibrous food and was in pain for days, and I think the ensuing frequency kicked off my first bout of pouchitis. I should have ordered the bidet attachment sooner. I relied on gentle baby zincofax because calmoseptine was too burn-y. Peeled (no skins!) and grilled or oven roasted zucchini was my best friend. No carrots, no mushroom, no nuts or seeds. Basically try to eat soluable fiber... [ more ]
I read about Ilex paste and just got a tube in the mail! [ more ]
Would apply ilex Protectant Paste around my temp ileostomy from day one to stop painful skin erosion before it occurs; also, continued using the stoma appliances I'd becoming accustomed to rather than using the appliances which the Hospital supplied after the forming of my loop ileostomy. Ilex Paste, is by far the best product I've used to treat and alleviate the red raw skin errosion around my stoma, cleared up within days; ilex can also be appled to treat, alleviate and prevent butt burn. [ more ]
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J-Pouch ForumsGeneral Discussion
I had also the three phase surgery last one was 2014. I observed my food intake , the worst are nuts , coconut milk, milk not even almond milk . broccolli , oatmeal, apples,cauliflower, onions, celery, watermelons, oranges ,chocolate , hot chocolate , salads.. rice is good it molds it, but too much of it causes cramps and constipation. Some days in a week I feel so weak and have to rest and rest. I WAS RUSHED TO THE EMERGENCY ROOM TWO MONTHS AGO FOR STOMACH CRAMPS I have canasa still but I... [ more ]
Hello, i just started taking CBD honey, 1/2 a teaspoon I’m shocked how well it calms my stomach, gurgling, and trips to the bathroom down. Immodium, pepto & opiods hardly work any longer after so many years of taking them. So happy to find something organic that works. Hope you’ve found the same relief. [ more ]
yes. I'm a frequent user of cannabis. If your going to look into trying to get any oils, have fun? The medical marijuana industry is turning into circus and the states are just filling their wallets and most have no reason for the patients needs for clean, tested and safe oils. why? medical cannabis can be contaminated with pathogens, pesticides, and adulterants that can be harm to a already weak immune system. It needs to be professionally tested by a expensive university or very expensive... [ more ]
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J-Pouch ForumsPouchitis
J-Pouch ForumsHelp! Need advice now!
Hi, The day has come for my wife’s first dose of pouchitis post 5 years since her take down, so not all bad considering the length of time. Is there anyone from the UK as the medication assess is so different. [ more ]
Hi Jan, Thanks for the advice my wife and I went into hospital a couple of minutes to midnight on Thursday. It seems she has a paralytic ileus and is on IV with no food until things clear up.. Will keep you updated. Thanks again! [ more ]
She could easily be moving stool beyond the obstruction, but vomiting above it. But, this soon after discharge, you should not be messing around with it. If she is not having any abdominal pain, it could be due to intolerance to oral pain medications. Regardless, you should call her surgeon (unless she was doing this before discharge and they are aware of it). An obstruction is usually due to a twist of the intestine from internal scar tissue (adhesions) that keep the intestines from moving... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Thanks for the info, hopefully this is why I can't get a repeat prescription in the UK and it's just temporary. [ more ]
Thanks for the information. I will inform DH.. [ more ]
FWIW, the following messages appear on the vsl3 web site: " VSL#3 ® Product Alert: VSL#3 ® may be temporarily out of stock in select retail pharmacies. If you have difficulty obtaining product, VSL#3 ® can be purchased directly by clicking the BUY NOW button. For more information, click here ." and "Is VSL#3 ® still available for purchase? Some pharmacies are unable to obtain VSL#3 ® due to a temporary wholesaler supply issue. There is no manufacturer recall and VSL#3 ® continues to be... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I am J poucher whose diagnosis was changed from UC to Crohns. I had my colon removed in 1992 and J pouch formed/connected in 1993. I had some bumps along the way...fissures, skintags excised to “help reduce fissures”, and a stricture at the inlet of my pouch which they did surgery to open up. In 2013, everything started falling apart. I was diagnosed with iron deficiency anemia and started getting iron infusions. My rectal area became really angry/inflamed and I just did not feel well... [ more ]
Sounds like partial blockages. Heating pad, white grape juice, walk to move it along. [ more ]
Have you considered a blockage? Your symptoms sound a lot like mine when I have a partial/total blockage. For me, they usually pass within a few hours. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsHelp! Need advice now!
Nick, I had this done about a month ago. The test was quick and painless.. ~Sandy [ more ]
Nichole, Thanks for your reply! I’m glad you are through all of this! [ more ]
Hi Nick, I had to look that one up did not know what it was. It sounds like a test they gave me after my pouch was ready for use but a much different technique. Sorry I couldn't help [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thank you all for the quick response. Scott I will definitely try the fibers you mentioned. Thanks Raj I will look into giving my pouch a rest Jeremy I also keep antibiotics on hand as well. [ more ]
In my experience, it's difficult to avoid leakage in a deep r.e.m. sleep b/c every muscle in your body is completely relaxed, including sphincter. The better you can sleep a little hungry; the better of you'll be. Make your last meal before sleep time your lightest and listen to your body. When you learn what foods/ drinks affect you in a way that produces more or less output you'll know what to consume before sleep. When your awake, the tightness of your sphincter will control leakage... [ more ]
Imodium is stronger than lomotil and I too found it better. I take 1 tablet every 2 days which is 2mg strength. Even that amount sometimes constipates me. Angie you should try with intermitent fasting. I eat in like a window of 10-12 hrs daily and rest my pouch other than that time. If you dont have any serious goals you can easily fast upto 14hrs a day. It relaxes the pouch big time. I'd say skip your breakfast and start the day with a good sized lunch instead. There are many articles... [ more ]
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J-Pouch ForumsGeneral Discussion
Hi, Laur. I’m sorry about your disappointing diagnosis. My circumstances had some parallels with yours, so I’ll share how I thought it through, in case it offers some useful tidbits. 1) My Crohn’s diagnosis was uncertain. Nevertheless, two surgeons turned me down, and the third was convinced that I had UC. The third one was probably basing that on arrogance/optimism, but I was inclined to agree with him. Crohn’s is pretty hard to diagnose with certainty. The definitive finding on biopsy is... [ more ]
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J-Pouch ForumsGeneral Discussion
Doctors always told me this was normal after someone has bowel surgery. I found controlling the diarrhea with tincture of opium also slowed the bowels and reduced the sounds. I do still have issues sometimes with bowel sounds so loud other people take notice. When I have pouchitis, the bowel sounds are increased and more audible - one of the clues that’s what’s going on. Also, if I have to hold my bowels for a lengthy period of time, it becomes more noticeable so I try to use the restroom... [ more ]
When you say stomach do you mean bowel? My bowels are very noisy post-surgery, down to trapped wind as I can't pass wind on its own without going to the toilet. It's something I've got used to and just laugh off. [ more ]
Someone mentioned that dehydration causes the sounds? How does that work? [ more ]
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J-Pouch ForumsGeneral Discussion
I have a small hernia through my abdominal wall under the old scar, but luckily it's just a section of fat, not blood vessel or bowel. I'm reluctant to have a piece of mesh put in with all the problems people have been having with mesh implants, and it's not causing me much bother. Good luck with whatever you decide. There's always something else, isn't there, just when you think everything's okay! [ more ]
You’re definitely not alone. My staples got infected and caused me to have a huge wound and eventually a huge hernia that I thought was normal until it became painful and grew. Used to joke and call it a “butt belly”. Finally after it was huge and awful I had surgery. I was so anxious about it but the recovery was actually great. I was feeling good a week later having to force myself to take it easy. FF a good 6 years or so later and I’ve had one again the last few months from heavy lifting... [ more ]
just FYI... hernias do not just go away [ more ]
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J-Pouch ForumsPouchitis
They also kill the bad stuff that causes all the problems. If you think that probiotics are a panacea that will solve IBD on their own, good luck. That doesn’t fly in most cases. Taking antibiotics with probiotics is often a waste of money because the antibiotic may kill the probiotic or reduce its count. My GIs in the past were against probiotics as a method of effective treatment of IBD as opposed to a dietary supplement, and the two objectives should not be confused with one another. [ more ]
Meant to sat that I took one midway between doses of Flagyl and now that I am off Flagyl (THANK GOD!), I continue to take one a day. [ more ]
Yes, I am taking probiotic. I was talking one between doses of Flagyl. I like Phillips Colon Health. I am not familiar w/ Visbiome. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Scott: not a garbage dx; just something that has been observed that we don’t understand enough yet. Definitely a common problem in medicine... Jan: problem isn’t diarrhea, so we haven’t tried the sandostatin. It’s a hypersensory issue where the pouch doesn’t exhibit normal compliance (demonstrated on manometry); I feel like I have to go 25x or more a day, but the stools are formed. Gas and stool create exactly the same sensation of needing to go right away. Imodium and lomotil help... [ more ]
Have you tried seeing another doctor for a second opinion? It might be worth being seen by someone else. Good luck! Solomin [ more ]
I have not tried the stimulator and can only recall one or two here who have. However, I was wondering if you were offered Sandostatin injections for your severe diarrhea. It is expensive and may likely need special coding to get insurance coverage, but it is a non-narcotic option you may want to ask about. https://onlinelibrary.wiley.co...65-2036.2001.01114.x Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
It would be best to visit the doctor to properly distinguish between hemorrhoids and a fissure. The straining is quite harmful in either case. Soluble fiber could help soften the stool and potentially reduce straining. *Anything* that stops the straining will be beneficial. [ more ]
I have experienced the same issue.ita not over the counter it’s a compound that the pharmacy has to make.You use before and after every bowel movements sits baths also help to relax the Sphincter to help with those symptoms [ more ]
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J-Pouch ForumsPouchitis
That's drink carbonated drink of any kind [ more ]
I love my milk ,but I've never been able to drive carbonated any thing . [ more ]
Try a hand full of youget an you'll know instantly by the relief if it's yeast. [ more ]
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J-Pouch ForumsOstomy & Skin
Ya, my surgeon said there was a lot of "jpouch junk" in there as well. Even though I hadn't eaten for 12 hrs prior, and thought I had pooped myself out clean beforehand! [ more ]
No prep, I just had mine removed but I will say the dr said there was alot of junk tangled in the scar tissue, maybe there should have been something to clean me out? Surgery took 6 hours. [ more ]
Whew, thanks guys. One less worry! [ more ]
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J-Pouch ForumsOstomy & Skin
J-Pouch ForumsOstomy & Skin
The biggest problem would be short bowel syndrome if you have had alot of small intestine used. [ more ]
Fortunately, there are two procedures available for those with failed J pouches and problem ileostomies. These are the K pouch and the BCIR. There is a lot of information available on the internet and both have a high success rate and degree of satisfaction by those who have them. These procedures do not require having an external bag with its associated issues and the stoma is button hole in size and located 2-3 inches lower than the stoma for a conventional ileostomy. As with any major... [ more ]
I did read of someone (maybe on this board?) who originally had a stoma created, but his/her skin reacted so adversely to the bag/adhesives and became so irritated that a j-pouch was the only option. I wonder what would happen to someone with a failed pouch who then couldn't tolerate a stoma? Must be very rare. [ more ]
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J-Pouch ForumsGeneral Discussion
Yeah, I looked at his bio also. Next time I go for a checkup, I’ll inquire. [ more ]
Here is his bio on the Yale website. He doesn’t seem to have any specific J Pouch expertise, like Dr. Oikonnomou a few years back who came to Yale after being trained at Cleveland Clinic by Dr. Bo Shen: Dr. Al Bawardy bio: https://medicine.yale.edu/peop...dr_albawardy.profile [ more ]
The new GI doctor at Yale is Badr Al Bawardy. Not sure if he has experience with J-pouch patients. Might be worth checking him out. [ more ]
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J-Pouch ForumsGeneral Discussion
They sprayed my throat with the numbing agent but unlike Jaypea, it didn’t stop the gag reflex. I finally pulled the NG tube out on my own, for which I was harshly reprimanded by a nurse, which I expected. However I had stopped vomiting, I felt better, my ileostomy was filling up and the coast was clear. Some are better than others at putting an NG tube down. IMHO, it requires a somewhat brutal and aggressive approach and mindset. I would suggest that if they deny your request (which I would... [ more ]
I've had one 3 times. No problem. What I mean by that is drink water like crazy while they are putting it in and it slides right down. It made it so easy. I do not mean to make light of an NG tube. But the second time I had one in it was such a relief. I had a twisted bowl and was so full it hurt so bad. As soon as the tube sucked out it was a great weight lifted. I filled a bag so fast they had to change it immediately and I filled half the next one. Ugliest green junk. Omgoodness it was... [ more ]
Don’t forget, g tubes go through the abdominal wall causing pain and yet another area for weakness and potential herniation when it comes out. Skin breakdown around the tube happens and the distal end of the tube can wander and not end up in the right place. You can vent a g-tube to get gas out but it is a bit more finicky. It is considered a surgical procedure. NG tubes are nightmares, I agree. [ more ]
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J-Pouch ForumsMen's Health
B12 is absorbed through as far a I know ,under the tounge don't work for me,I just give myself a shot once a month I'd like to do it two weeks but insurance won't py for it,it's about$20 for three months [ more ]
You can get B12 tablets that you place under the tounge so they get absorbed that way. They are labelled sublingual. But you need to check that they are working. [ more ]
Liquid vitamins are great ,I also need b12 shots I do myself b12i absorbed in the large intestine no by mouth or stomach ,when I need it m hands hurt incredible an after 10 minutes they don't an more energy, an energy is my pro lem [ more ]
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J-Pouch ForumsPouchitis
Thanks for the feedback! [ more ]
As Scott says; B12 is really important as it aids many of the processes in the human body. It's surprising how easy it is for Health Care Professionals to miss low levels of B12, D3 etc. The body stores quite a bit of B12; but when they make the pouch they remove the bit that absorbs B12. [ more ]
I had prostate surgery in 2014. Not cancer. It didnt help, and likely made things worse. Thanks for the advice re B12. I'm 68 and live in Ontario, Canada. Cheers. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I have been dealing with severe GI hemorrhages since January of last year.I have an area that connects my small bowel with j pouch that had an ulcer that keeps bleeding that has caused me to have 11 transfusions of blood within a year. Are you on medication? How are things going now? [ more ]
Dr Shen emailed and stated that they are ischemic ulcers on the suture line and it is common and usually don't report it on the finding unless there is an issue, like mine I guess. He said if I start bleeding again I will need another pouchoscopy... fingers crossed I don't cuz between 2 scopes and a hospital visit I am broke.. if I start having issues I may consider removal of this pouch and go perm ileo. I just have not been feeling great past several months. Losing weight as well, with ... [ more ]
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J-Pouch ForumsHelp! Need advice now!
It is possible that you have pouchitis. Your doctor can test for it and prescribe antibiotic(s) like ciprofloxacin and possibly Flagyl. In the meantime, while you are waiting to see a doctor, try to avoid eating foods with flour / wheat. Hopefully this will reduce your gas. Good luck! Solomin [ more ]
I would be miserable without my bidet. [ more ]
Thank you very much AIMC and WINTERBERRY I thought that’s what it was, but with everything going on I just wanted to be sure. I have to constantly remind myself that it hasn’t even been two months even though it seems like a lot of time has passed and I feel so much better after this surgery. I already take probiotics and drink some kefir as mum does too and made me do it as well haha. Yesterday I used mum’s cream Tormentiol which had a got zinc that she uses for everything and that seems to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Have you been tested for pouchitis? Maybe you have this and need antibiotics. Another thing to try is a prescription cream (at least a prescription is required in Canada) of Nefedepine or a Nitro based cream. I tried both in the past, but could not tolerate the Nitro based cream and it can gives head-aches as a side effect. Nefedepine based cream helped me a lot (just make sure you are not allergic to any of this stuff). Good luck! Solomin [ more ]
Calmo is my best friend. But when things are raw, from stomach acid and bile that have not been reabsorbed, even calmo or other barrier creams are not enough. If you have diaper rash (candidiasis of the skin), everything burns and is completely miserable. I made a cocktail of zinc based barrier cream, ketoconazole ointment (prescription, but your doc will call it in for you), and lidocaine ointment, and it got me through a few really horrible days. If you want to keep them separate, put on... [ more ]
Anyone try lidocaine and hydrocortizone spray? I hear that it numbs the area and treats the itching/burning. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Have you been checked for pouchitis? Perhaps you would benefit from antibiotics ciprofloxacin possibly combined with flagyl. Another thing to try is to avoid food with flour / wheat and see how your body reacts. Good luck! Solomin [ more ]
Thanks Scott. I have not been to Gastro in a couple of years, so sure I’m due. Will bring it up when I go see him. Thanks [ more ]
When I was having substantial issues with gas my GI treated it as SIBO (small intestinal bacterial overgrowth). A couple of months of doxycycline cleared it up. [ more ]
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J-Pouch ForumsHelp! Need advice now!
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my DH has SIBO from time to time. His GI is sending him to Penn State where there is a doctor who specializes in SIBO. [ more ]
The expensive medication must be Xifaxan (rifaximin). It’s really not the only antibiotic that can help, but it sure is the most expensive one. Even Xifaxan is sometimes stopped too soon. If the insurance company turns you down for Xifaxan you can ask your doctor about other choices. [ more ]
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J-Pouch ForumsGeneral Discussion
The terminal ileum has some specialized functions, and it’s hard to know how much that functionality may have been disrupted. Make sure your doc keeps an eye on your B12 levels over the years. Good luck! [ more ]
Hi Scott, Thanks for the information. The necrotic bowel was just above my j-pouch, so I am assuming it was ileum. Luckily, my pouch was unharmed. In a second surgery a few months later, there was about 5 cm removed due to scar tissue causing an obstruction around the ileostomy closure site. I hope you are well and appreciate the information. Barbara [ more ]
30-40 cm of ileum are used for J-pouch construction. The ileum is 3.5-4.5 meters long. The whole small intestine is about 6 meters long. You should have plenty to spare. Do you know which part of your small intestine was removed? [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsHelp! Need advice now!
Good luck Maddie! Solomin [ more ]
In ER and hospital constantly for SBO. No end in sight. I am told it is because of adhesions and scarring. Eight abdominal surgeries and just trying hard to stay out of surgery. Been told it is too risky to operate again. Been off for 4 mths, three admissions and finally back at work. 4 hours per day to start. Wish me luck my friends. Wishing all of you the very best!! [ more ]
I hope you feel better soon! [ more ]
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J-Pouch ForumsGeneral Discussion
Maybe you have pouchitis. Perhaps you can see your GI and get a prescription of cyproflaxin possibly combined with flagyl. This drug will more than likely destroy your gas and provide more consistent stools. Good luck! Solomin [ more ]
Well I guess I should note, I tend to have extremely long toilet visits. 4-6 hours on average. 2-3 times a day. Once those are out of the way though I tend not to have gas pain til it's time for the next trip to the bathroom (about 8-10 hours later). I get zero gas pain in the interim, then when it hits, it hits hard. I am taking all the standard anti-gas precautions as you stated. For your last questions, I guess I'm not totally sure. But it seems to me more like an abnormal amount of pain... [ more ]
David, you don’t say how long after your last toilet visit this is happening. Is it possible you’re just waiting too long between trips? Also, I assume you’re taking all the “usual” steps to reduce gas (e.g. eliminating sodas/seltzer, eating carefully to avoid swallowing air, ...). I also can’t tell whether you have an unusually large amount of gas, or simply an extreme amount of pain from a normal amount of gas. Are you able to tell which it is? [ more ]
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J-Pouch ForumsHelp! Need advice now!
I once read on the jpouch forum that clear grape juice can help with obstructions although I have not tried using it (I never had an obstruction). You can also try laying down and bringing your knees to prenatal position and see if you can pass anything. This works for me Good luck! Solomin [ more ]
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J-Pouch ForumsGeneral Discussion
Seems to me, they know the causes (obstruction) of your highest Sed rate. It is coming down now. It takes a while to recover, and residual inflammation can linger. Plus, like what was mentioned, Sed rates is a non-specific inflammation marker. It is mostly monitored to assess treatment, not as a real diagnostic tool. Jan [ more ]
Sed rate can be up for a number of reasons, including fighting a cold/flu and other stuff that your body is fighting but you may not know it. If the doc isn’t worried, I wouldn’t be worried either. It’s a marker that can be increase for a lot of diff reasons and mostly is an indicator of something wrong if it’s combined with others. If you’re feeling okay, I’d just trust that. Best! [ more ]
It's not that I didn't believe them, I'm always afraid that something is wrong. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsMen's Health
Psyllium fiber is all I've ever needed sind 1992 ,no peanuts or alcohol an watch out about chocolate [ more ]
They put me on methadone. Diilauid only for big pain. 34 years [ more ]
I would say it is highly unusual to be prescribed morphine for bowel slowing. Paragoric or codiene is mor common as an opioid option. Morphine just has such a high abuse potential. I can only assume they’ve tried everything else. Jan [ more ]
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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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