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J-Pouch ForumsGeneral Discussion
Digestive enzymes
LaurieFLaurieF
LaurieF Thanks again folks. Ive been researching and i think i will try to find a supplement that would have a good amount of the enzyme “cellulase” since from what ive read is what would help break down cellulose. Before this narrowing vegetable digestion was not a problem but now i have to really watch it. Thanks again for your input [ more ]
Raj Raw veggies does make you go often. So what it shouldnt stop you from having them. Whenever I am at my home and I dont have to go out I get myself all veggies in a good proportions (includes corns and mushrooms) make a dish or steam them and put some good seasoning and I'll just eat them all. I wont lie it make run like 3-4 times in just 2 hrs but its totally worth it. It gets normal after that. And as I am eating more I can tolerate them better everytime. My takedown was 3 months back I got... [ more ]
Bubba1028 I try it, i figure it can’t hurt! I think it helps with the gas and bloating. I take it only at night with dinner and a gas ex with dinner too. I find it helps with the gas and bloating. It may change the further I get out from my takedown. There are foods that I stay away from even with the enzymes and gas ex, such as apple skins, grapes, kale, etc. I say give it a shot! Track your results and see if it produces results. [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch creation complete UPDATE
NickPNickP
Bubba1028 Oh that sounds horrible. I had have two blockages and a partial blockage and they are horribly painful. They were going to put in an NG then to relieve the pressure but I resisted, knowing that I’ve heard horror stories. I’m so sorry you went through this! Hopefully your next one will go much better and without any complications! Lord knows you deserve an easy surgery and recovery after this one! Let us know how you do with the recovery from here on out. Hope you’re seeing a nutritionist or... [ more ]
AARON I had ileus after both surgeries and didn't do much walking during either due to my bladder that went to sleep too. So I had a catheter and wasn't allowed to leave the bed. My ileus lasted only 5 days each time and my bladder woke up that day also.. ng Tubes suck. I feel your pain man. It's what nightmares are made of. [ more ]
Raj Damn I was kept for 3 days and couldnt bear even that. My surgeon wrote me off for the second day evening but I stuck around till the next day. I was doing 12x on the second day so I didnt want to go for the long trip to home. They gave one anti diaroehha just for the trip and paracetamol for 1 week post op. [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone have a pouch and Interstitial Cystitis?
S stpaulmom
JulieT Yeah, the self-cathing is not fun. I do hope the UTI clears for you. I'm really struggling to get rid of mine once and for all. Keep me posted! [ more ]
stpaulmom I can’t imagine self installing! I’ve never even self catheterized! You’re amazing! I tried Botox last summer, it made me worse. Never again. I won’t do interstim because of the MRI issue. I find a heating pad helps too. I’m hoping this bout of UTI’s is short-lived. I haven’t had these, ongoing for awhile now. [ more ]
JulieT IC pain is so frustrating. I've been battling a stubborn UTI infection for the past two years. It seems like two weeks after finishing a round of antibiotics, I end up with another infection. Do you struggle with repeated infections as well? Instillations can be helpful. I asked my urologist for a kit so I could do my own at home. An instillation does take the edge off of a bad flare-up for a short period of time. I also have been having botox injections for the past three years. The only... [ more ]
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J-Pouch ForumsGeneral Discussion
Radioactive Iodine (RI-131) for hyperthyroid
R roseviolet
roseviolet CTB, You've presented the perfect argument in favor of annual physicals. The glass half empty approach probably goes with being a lawyer. You deal in reality & facts and you're not prone to simply assuming the rosiest outcome. Having a disease such as U.C. and, as in your case, having cancer, is nasty, but it also brings with it a depth of feeling and understanding for others and a most definite appreciation of life's transience. The marvels of life, from the resilience of the human body... [ more ]
CTBarrister Thanks Rose. It’s been 3.5 years now since I went through that. When my surgeon informed me that the biopsy on the thyroid came back positive for papillary thyroid cancer I was in shock. I never had any issues with my Thyroid although my mother and sister, like you, are hyperthyroid. All of this was detected due to my primary care doctor doing a routine annual exam and feeling swelling in my throat glands. Otherwise I would never have known. I was very lucky with a good team of experts- Dr. [ more ]
roseviolet Thank you for your added info. Health stuff can be so tricky and there's lots to consider. You were certainly fortunate to have such an expert on your team. Your thyroid episode must have given you some worrisome days. Am glad it's behind you and wish you the very best. We're all fortunate that you are so willing to share your experiences and knowledge. Rose [ more ]
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J-Pouch ForumsGeneral Discussion
Defecography
JesseP22JesseP22
Aimc Hi Jessep, I had my last surgery on Aug 15th, and was having a problem with emptying my pouch. I know it sounds really to easy, but try upping your liquid intake. I upped mine from around 60 ozs. to around 84 ozs. I can't believe it, but I have been doing alot better. I feel as though I'm actually empting my pouch now. As far as gas, we all have problems with passing gas. I don't seem to have as many problems as before though, because I no longer have the constipation I had before. Give it a... [ more ]
Scott F Unfortunately you may not get a 100% answer. My suggestion would be to go with the odds and follow their advice. Do the exercises consistently and you just might get great results, which would be a very satisfying 100% answer. Your pouch is still pretty new, so plenty of adjustment is reasonable to expect. [ more ]
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J-Pouch ForumsGeneral Discussion
oral meds for cuffitis ?
PouchomarxPouchomarx
Pouchomarx had upper scope, all normal...pouchoscopy showed two small ulcers at the pouch inlet so Dr Shen stated very mild pouchitis so prescribed Tindamax for 14 days. Said everything else looked really good. Been on them for 5 days now but my frequency has increased ?? and every once in a while I get some bleeding in the toilet, there after one poop and then gone the next.. he stated most likely from having a pouch redo. Said the area there is shortened and is very prone to irritation. ok lol [ more ]
Jan Dollar I took sulfasalazine for cuffitis when I was tired of suppositories. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
scar tissue/anal manometry
tftf
tf It's a long road and your new normal will feel and be better at times and sometimes so bad you don't want to continue. Keep going, each day is a new day to have a good day. When the days are good take full advantage of. We are here to support one another and it is comforting to exchange our feelings and views. So much good info on this site. I've learned a lot. God Bless [ more ]
rlblife I had it today- not fun but not terrible! [ more ]
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J-Pouch ForumsGeneral Discussion
VSL-3 maintenance advice
M marypar
marypar Thank you. He's had some pouchitis over the past 25 years but this bout was worse as he had blockage too which took over two months to start to clear up (even tho doctor doesn't related blockage to pouchitis, husband feels he is wrong and they are related). Medicare doesn't cover VSL but will check the website and see how much we can save. thanks for all your answers. [ more ]
Scott F The coupons are easy to find on the VSL web site. [ more ]
lablover Also see if you can get a coupon from VSL. My husband uses that and can get a 3 month supply for $179. [ more ]
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J-Pouch ForumsGeneral Discussion
Hospitalized / Likely not GI Related but Who Knows?
C capper
Lesandiego Last year I had viral bronchitis that was treated with antibiotics. Treatment did not work and they put me on prednisone and "mis"-diagnosed me as COPD. Long story-short... I ended up with congestive heart failure and a pulmonary embolism. My heart was only pumping at 19%. Cardio doc did a swan catheter surgery to drain the fluid off my lungs and I felt so much better. I now take Entresto and Metatoporol (BP medicine). I tried to wean myself off the meds, but I'm afraid the damage is... [ more ]
rustyskyline I am surprised there are not more posts like yours. Two years ago, I began coughing and bringing up a significant amount of phlegm. Since then I have seen 8 docs, have had six diagnoses and have undergone dozens of tests. The only thing they have determined is what it isn't. It isn't asthma, bronchitis or an infectious disease. All of the docs commented about a potential connection between my IBD and problems with airway passages. Similar to the connection with having digestive tract issues... [ more ]
Jan Dollar A few years ago I was hospitalized with violent chills and fever, shock. Diagnosis wound up being just sepsis. They ruled out flu, pneumonia, bacterial blood infection, etc.. Never found out what was the real culprit. Later on, I did wind up with chronic pouchitis. Remicade did work for that. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
VSL 3 side effects lightheadedness
AI Accept It
Accept It Hi Scott, Thanks for your response. I think I may be having some anxiety, which would cause lightheadedness. I am battling pouchitis right now and some stress. I'm super hopeful that VSL 3 (along with antibiotic) will resolve the pouchitis and help with my digestive issues. I believe you are the one that recommended this. Thank you!! [ more ]
Scott F This would be a very unusual side effect from VSL. I’d suggest looking pretty hard at other possible causes, perhaps a bit of dehydration, which is pretty common with J-pouches. [ more ]
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J-Pouch ForumsGeneral Discussion
Chronic sinusitis and humira (anti TNFs)
SaffSaff
Saff Ok thanks for the hot tip Scott, Yes that's the same saline rinse I've been using, its great - ill see if I can find that brand here Qnasl. THanks [ more ]
Scott F I used other nasal steroids for a long time with inadequate results. I changed two things, and one or both of them made the difference: 1) I do a sinus rinse every day a few minutes before using the nasal steroid, and 2) I switched to QNasl, which is one of the few remaining products that sprays well into the back of the nasopharynx. Together these seem to deliver the medication where it’s needed. The sinus rinse bottle is much easier than a Neti Pot. NeilMed Sinus Rinse [ more ]
Saff HI Scott, apologies that was an oversight, I should have also mentioned nasal steroids - I used nasonex - a different brand from the one you used, but also a corticosteroid. Still no joy for me, [ more ]
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J-Pouch ForumsGeneral Discussion
Healthy Living with a J-Pouch
G Goody21
CTB23 Good advice. Still figuring things out for me. Biggest problem I have is not gaining weight, a little over two years out. Although. I have never been overweight, even when I was pregnant! I try to limit sugar and carbs also, but not always as good as I should be. I like my dark chocolate with peanut butter. [ more ]
CTBarrister Very good advice to all Goody21. I have had a J Pouch for 26 years and ate more or less indiscriminately for 20 of those years. In 2012 after gaining some weight and developing worsening symptoms, I was diagnosed with SIBO and my then GI warned me to start limiting my intake of sugar and processed carbs. It did and does make a difference. The J Pouch is prone to SIBO and sugars and carbs promote a feeding frenzy by bacteria and can cause or worsen SIBO. Unfortunately many people want to see... [ more ]
Goody21 I agree with you! Here and there, processed foods or a little sugar won't hurt. But I feel in todays society that's a majority of peoples diet.... Intermittent fasting (Giving your digestive track at least 12 hours of no food maybe just water or black coffee) does wonders also... Physical activity and stretching is a ++ in terms of stress, social anxiety, etc. It's crazy the factors that play a role that can make a big difference.... Hope all is well [ more ]
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J-Pouch ForumsGeneral Discussion
Medical Marijuana
D DSTJ
Beth-Jpouch1991 ❤️
DSTJ DarrenKS, thanks for your response - are the CBD capsules you are taking an over the counter product? I have been to a dispensary and have been using a dry leaf (flower) product via vaporizer with a 1:1 ratio of THC to CBD and it has helped a lot. Before starting it, I thought for sure I'd have to go back on Cipro since I developed all the symptoms for Pouchitis again, but the pouch has calmed down and I'm feeling pretty good. [ more ]
Marsh Chap Have you tried the oils as well? Or only the capsules? [ more ]
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J-Pouch ForumsGeneral Discussion
anal itching
S Susan33
Spooky Yeast infections can be persistent/recurring if they are not fully eradicated from the get go. Have you ever been prescribed an oral antifungal medication such as Diflucan? If not, this is definitely something to look into. Calmoseptine - or any topical ointment - may temporarily relieve the itch, but if not used correctly, can actually cause a rebound affect as the damp environment created underneath the barrier cream can encourage fungal growth. You can mitigate this by ensuring the area... [ more ]
Scott F Are you certain that the fungal infection is completely gone? That’s the most common cause. If you have any leakage that leaves the area wet then it’s hard to get rid of fungus. [ more ]
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J-Pouch ForumsGeneral Discussion
Muscle and joint pain years after colectomy due to UC
C Cate
drone3 Just wanted to update that I'm now on MTX and Humira. I just couldn't control the arthritis naturally and it was just too painful. I'm still quiet limited in what I can do physically but it's much more predictable and under control. Considering trying some CBD oil would love to hear more feedback. Also wondering if there's any contraindications with MTX or Humira? [ more ]
Marsh Chap That's great news! I was planning on trying cpd oil . Is it sublingual? Or do you vape? What probiotics are you using? [ more ]
trish1968 And now I started something else. I’m using cbd oil. I started 3 months ago for bad anxiety. It’s helping my joints too. I have to cut back on supplements bc of cost so cbd oil now and 1 joint supplement. And probiotics of course [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch and masturbation/sex and pelvic pain
M Moe
YungriiMobliatri Sounds unusual. And while I don't think it's where your question was heading, receptive anal sex has been done by at least one person on here but that was over a decade ago I read on that. [ more ]
Scott F It is safe for folks with J-pouches to have sex with or without a partner, though I’m not sure if anal sex is advisable. It’s not typical for it to hurt as you describe, and you may want to discuss it with your doctor, though I fear the answer may be unsatisfying. [ more ]
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J-Pouch ForumsGeneral Discussion
Seeking Book Recommendation on GUT HEALTH
K_InTheFloK_InTheFlo
Scott F Most of what is written about “gut health” is about colonic function, and has essentially nothing to do with folks who have J-pouches. If you’d like to reduce your frequency you ought to start by thinking through the physical cause. There’s a big difference between low pouch capacity vs. high output, for example. There’s a difference between managing liquid stool vs. soft solid vs. formed. There’s a difference between true urgency (I.e. delay will cause an accident) vs. a pressure... [ more ]
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J-Pouch ForumsGeneral Discussion
Immodium
MC Marsh Chap
TE Marie I take 3 before bed and 2 with dinner. [ more ]
Jan Dollar Up to 8 per day (16 mg) is considered the maximum daily dose. It is reasonably safe at much higher doses, but there is no added positive effect beyond the 16mg, and side effects increase. I have read of no liver damaging effects, but if you have liver damage, it can build up in the body faster and cause side effects faster. I personally took the maximum dose for 4 years post op, then gradually reduced it over time. I currently take only one daily. So, over 23 years I have safely taken... [ more ]
Spooky My surgeon has said I can take up to 8 per day as necessary. That would seem consistent with most of the information on this forum. I don't take Imodium regularly not have I ever needed anywhere near that much when I do use it, but 8 seems to be the benchmark in as far as the amount that should not be exceeded. However, if you're uncertain about the amount you're taking or the effects of long term use, it's best to discuss things with your GI/surgeon. [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch removal / Rectal removal
Richard_UKRichard_UK
TE Marie I had a fluid like something on my bladder per a CTscan after I was diverted to an ileostomy. I was admitted for an interventional radiologist to drain it to find out if it was an abscess. It was normal fluid that had accumulated there after the surgery and it would have dissipated all by it's self. During the next, and last, surgery my j-pouch was removed. My back side took the longest to heal but there wasn't a discharge. [ more ]
skn69 Richard, It can seep for quite a while...I know that it seems like a lot but a couple of tablespoonsful of liquid feels like gallons! Every surgery, I collect fluids behind my scars (infection? just clear or pinkish liquid sometimes)...rarely a massive infection but usually just seepage. I won't say that it is nothing but I will say that if it isn't thickish, greenish, yellowish or smelly than it is less dangerous. Some of us just build pockets of fluids and as long as they come out, we are... [ more ]
Richard_UK Thanks Sharon! I went to my gp yesterday and he sent me to the hospital. Surgeons seemed quite unphased by it, said it may have been a little infection but my blood cand back pretty normal. He said it looked like it had all came out which I highly doubted as my pad was still sodden with this mucus / puss discharge. He sent me home with a five day course of antiobiotics. Woke up this morning and it’s still leaking out of me at a fair old rate! Let’s hope these antibiotics work. Fed up of... [ more ]
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J-Pouch ForumsGeneral Discussion
When to recheck B12 and folate?
B BlueFlame
Jan Dollar B12 is absorbed in the terminal ileum, so if you have pouchitis or Crohn’s in the distal ileum, it can interfere with B12 absorbtion. Inflammation interferes with normal gut function. Jan [ more ]
BlueFlame Update and follow up question.....My B12 was 1106 in January when I was getting monthly injections and taking it sublingual daily. I stopped sublingual when the doc said just do the monthly injections. My B12 now (8 months later) is 465 and was tested right before my monthly B12 injection. I'm wondering what I should consider for ongoing supplementation as I am back to the low normal range (though my low was 247 before starting injections). My PCP isn't concerned, but is not... [ more ]
Jan Dollar I took it for 3 months and the next test was through the roof. So I dropped to every other day, then 3 times a week, then twice a week. There is no danger with a high B12 level, but what’s the point? I don’t even do the subligual. I swallow it. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
How do you handle gas pains when you must sit for long periods?
M MCH
CeeeeCeeee For me, one of the very positive aspects of having a J-pouch is being able to empty it whenever I need to. I've taken to coughing hard when seated on the toilet and my J-pouch empties along with any gas I may have. So, before going on a lengthy car ride, etc. I take a few minutes to empty my pouch! I also limit what I eat to comfort foods if I find I'm going to be in a situation where I can't easily go to a bathroom. I think each of us has our own list of foods we consider to be comfort... [ more ]
MCH Thanks Jeremy. For some reason I did not see your first post, so I have not done it yet. I will look into it. Have you seen the caps at other stores? I have actually done a lot of things to try and be less stressed about my course and I think that has helped a lot. As in, I have not had the issue since. So for once I may not make an A, and I can live with that. Is that what I want? Of course not, but for the sake of my health, I can accept that. (And if you think I am being mature, I am not,... [ more ]
Jeremy S Hi MCH, Just wondering if you tried the charcoal chaps? [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch and partial blockage? crohn's too?
M marypar
CTBarrister Marypar, My 2 step surgery was also in 1992- stage 1 April 1992 and stage 2 July 1992. The dynamic duo of Gelernt and Gorfine gave birth to many pouches including some others on this board besides me and your husband. I have very good memories of both men and their oversight of my care in the years after surgery. Gelernt was a much more serious guy than his sidekick and spoke with the voice of God. I really felt like everything that came out of his mouth was medical Gospel and it was no... [ more ]
CTBarrister Long story but I had a septum develop in the Pouch which was preventing me from completely evacuating the Pouch. I knew something was wrong because it felt like stool was “hitting a wall”, and it was. It was surgically corrected by Dr. Gorfine. I think it was probably a good idea to cancel the appointment because for $650 he would be telling you there is nothing he can do and he would probably just rubber stamp what the Gastro already said. If there is a legit surgical issue it’s at least... [ more ]
marypar Oh, I meant he did the dilation four years ago. We haven't seen him since and will cancel next week's appointment - sorry about that. [ more ]
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J-Pouch ForumsGeneral Discussion
GI in Sarasota/Lakewood Ranch, FL.?
BarbieGBarbieG
tonyp Thanks for the post BarbieG and thanks to all who responded. I live in Orlando and my GI doc recently retired. I've been looking for a doc with pouch experience but thus far have come up empty. I'm definitely open to traveling to Weston or Naples and will be scheduling with Drs Weiss or Phillips. Take Care [ more ]
BarbieG Thank you all for the referrals. Still hoping I can find a good GI closer to Sarasota, not having any really difficult problems now except diarrhea. But a two and a half hour drive isn’t out of the question for the best doctors at The Cleveland Clinic in Weston [ more ]
Peti I'm sorry , I just reread your message . I thought Dr Shen was here in Fl. I usually never travel to Ohio. So, you recommend Dr. Phillips in Naples. Is he a GI physician or a surgeon . I'll look him up . I see Dr Weiss when I have to seek help but would love to have a Dr closer to home for just routine visits. Thank you for your time to answer me back . [ more ]
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J-Pouch ForumsGeneral Discussion
VSL#3 Probiotic for pouchitis
T Taranus-saurus
Raj I used to take VSL3# DS just after my takedown for like a month . Then I cut it out slowly. It was great in not letting build up of excess gas and I felt good. I slowly cut it down . Now I take no meds . There is some gas but I think my pouch and intestines are slowly absorbing more and I can hold much longer. Havent had any pouchitis so far or a blockage so its pretty much the same. But yeah its a good supplement overall in digesting foods when you are bulking and when you eat big meals. [ more ]
Scott F There have been many discussions of VSL #3 here, and a simple site search would provide you with tons of information. In my browser a magnifying glass icon is where Search lives. I use a maximal dose of VSL #3 DS (4 packets/day), and I’m convinced that it helps keep my chronic pouchitis at bay. I was able to persuade my insurance company to cover the prescription-only DS (double strength) formulation. [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone have a jpouch redo by Dr Remzi?
M Momma
ShaunC Dr. Remzi's office called me back and sent me the new patient paperwork. Won't talk to them about an appointment until Tuesday, so I hope they can get me in sooner rather than later. I am also considering trying to get into the Mayo Clinic to be considered for a jpouch re-do. My rectal cuff is still diseased and I found out that several people who had he same surgeon as I have already had re-do's for the same damn issue. NO one told me the surgery could be done without leaving a piece of... [ more ]
Pouchomarx first pouch had leaks and a sinus, I had a really bad ecoli infection after first surgery and almost killed me. I spent 10 weeks in hospital. I had several surgeries trying to fix it , but everything failed. had the redo. all surgeries at Cleveland Clinic. Irritation from the leakage, I would think or the pad I have there?? But Dr Shen states burning and irritation are very common issues with redos they are finding. Regrets, not really. I hate the minor leakage and this irritation but I will... [ more ]
Momma Pouchomarx what was the original reason for the redo? Is the irritation from the leakage like butt burn? Any regrets? [ more ]
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J-Pouch ForumsGeneral Discussion
st marks hospital advice
T Tigerstripe
Bobish Uk is different to countries like USA! NHS bowel specialists are very capable, although some may prefer not to do a certain operation laparoscopic ally, ST marks is the flagship hospital in UK for research into bowel conditions and bowel ops. Any doctor that works there will be very capable. [ more ]
Hermione Hi Janindra is my surgeon at St Marks and with total honesty can tell you that you have truly 'hit the jackpot' !! I do not have anything negative at all to say about him or his team. I was referred to him for an extremely problematic ileostomy about 7 years ago and he then performed my 2 pouch surgeries. JW is very down to earth, he gives patients the time they need in appointments and has always really listened to me. He has always been incredibly thorough with all required tests and taken... [ more ]
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J-Pouch ForumsGeneral Discussion
Sudden Leakage at night
S StarKitten
Still Standing I'm going to agree with Scott, I think you have pouchitis starting. Unfortunately, leaking at night is my number one sign that I've got the 'itis. (Usually from eating too much sugar, which I know better than to do, but it tastes so good!) Don't let it go to long before talking to your GI. [ more ]
Scott F Sometimes this is an early symptom of pouchitis. If that’s what it is, 10-14 days of an antibiotic will usually clear it up. I do take Lomotil at bedtime, which also seems to help. [ more ]
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J-Pouch ForumsGeneral Discussion
Non relaxing Pelvic floor
JesseP22JesseP22
Happytobealive I tried everything medically offered to me. Probiotics, enemas, special exercises, special diet, fluids only, suppositories, yoga, a medical wrap that wrapped me up from pelvis to chest, and was offered anti depressants. I didn't want to do the anti depressants, because I wasn't depressed, just in constant pain from the clenching. Now I am perfectly fine. Without my prescription, I would be in big trouble. [ more ]
Jfill21 Before getting the oxy, did you have to prove that pelvic floor therapy, etc., did not work? [ more ]
Happytobealive I too had those painful fissures due to my pelvic wall refusing to quietly just do it’s job, the only thing that worked for me Is by taking Oxycodone to force the pelvic wall to relax. now I am able to work and live a normal life. The bad part is it took me a year to have to get on a program with a pain management specialist who understood my problem. And I have to go once a month for a doctors visit and they sometimes urine check me, as well as few other practices because of the ability for... [ more ]
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J-Pouch ForumsGeneral Discussion
Need help with stomach pain (possibly IPS)
R RB15
Charlie cbnice@verizon.net Ok, So after dealing with almost two months of abdominal pain, I decided to drive to Cleveland Clinic and discuss this with my terrific gastroenterologist. After a thorough exam, he determined that I have pouchitis and SIBO. He prescribed Fagyl for two weeks. After only four days into treatment, I felt so much better! [ more ]
RB15 Hi Charlie All i can say is that over the years when i had the pains, i exhausted every option which included thinking it maybe pouchitis / SIBO, the relevant courses of antibiotics did nothing for me, they have done in the past though when i have had bacterial overgrowth. it was trial and error for a long time with myself before settling on the fact it was a type of nerve pain i was experiencing, maybe from stress or anxiety. Years of Amitriptyline brought minor relief, but nothing like the... [ more ]
Charlie cbnice@verizon.net Hi RB15, Ok, so today I had my appointment with my surgeon at Cleveland Clinic to discuss my abdominal pain/discomfort and to have my routine two year Pouchoscopy. He stated my Pouch appeared slightly red but otherwise, appeared ok. He took 16 biopsies. I mentioned to him about a possible correlation between SIBO and Pouchitis. He said he has not read anything that confirms it so that idea is still on the fence. Have you read any studies that confirms it? My surgeon wants me to finish the 6... [ more ]
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J-Pouch ForumsGeneral Discussion
UPDATED: B12 Depletion - Pouchitis versus Crohns versus Cipro???
B BlueFlame
BlueFlame I found this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3424428/ Vitamin B 12 Deficiency The physiology of vitamin B 12 absorption is complex. Vitamin B 12 is liberated from dietary sources by acid and pepsin. R factor is released in saliva and binds to free vitamin B 12 to protect it from degradation. In the duodenum, R factor is cleaved by proteases, allowing vitamin B 12 to bind to intrinsic factor produced by the stomach. This complex then moves to the ileum, where it is absorbed by... [ more ]
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J-Pouch ForumsGeneral Discussion
Defecating proctogram
MO Mary O
TheoG33 I was having feelings of incomplete emptying despite pelvic PT and had one done at Cleveland Clinic (ordered by my doctor Bo Shen...the rumors are true - he is amazing). The test can show any structural issues that might also be going on with the pouch. It was quick and painless, and instant results. If you have ongoing issues I think it's a good idea to explore vs. risk waiting and suffering. BUT - be sure you have a doctor that you're confident in when it comes to handling any results. I... [ more ]
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J-Pouch ForumsGeneral Discussion
Switched from Cipro to Xifaxan......night time incontinence issue
B BlueFlame
Scott F CT is highlighting a useful point but putting it too strongly, I believe. It is generally better to rotate antibiotics as he describes if you are able to find more than one that works and is tolerated. If only one does the trick then it’s not only acceptable but quite appropriate to stay on it. You may or may not have problems if you stay on a single antibiotic. [ more ]
CTBarrister Two months on any antibiotic is unacceptable. You have to rotate or long term you will have problems. I would not be on any one antibiotic more than 2-3 weeks before rotating. Xifaxin in my experience has less of a thickening effect than does Cipro and Flagyl. And it’s good to have in your rotation because it’s not systemically absorbed but if you stay on it too long it will lose effect. [ more ]
BlueFlame Update: I wanted to give an update in case it may help others trying Xifaxan/Rifaximin. It seems my gut was just adjusting to the Xifaxan. I took one capsule one time of the psylllium husk. Nightmare constipation, which is never my issue. Cipro and Flagyl have offered welcome levels of constipation, given I usually have the reverse issue. I was also having stomach aches during the first weeks of Xifaxan (during the higher load dose). As my body adjusted and the dose was reduced, the stomach... [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Pouch twisted
ceewceew
ceew Tinam. I very sorry I didn’t no reply to your post. I don’t got on here often. Did you have a twisted j-pouch? I hope everything is well with you. [ more ]
TinaM Thank you for your sharing your story Sharon. [ more ]
skn69 Hi Tina, Well, we are all different and our pouches react differently but in my experience, a twist (when it came on suddenly) felt like a mule had kicked me in the gut. I drank a can of diet coke strait up (not the smartest move ever!). I was house cleaning, bending and twisting) and lay back on the sofa, with my legs up against the back of the sofa and suddenly I was doubled over on the floor screaming. I knew what it was even if it had never happened that way before...so, I did not... [ more ]
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J-Pouch ForumsGeneral Discussion
Blood Pressure Medicine bothering J-pouch and intestines
Pilot DebbyPilot Debby
Pilot Debby Thank you for your response! I have a j pouch done at the Cleveland Clinic...I am not familiar with a Koch Pouch. [ more ]
Pilot Debby Thank you...I am just trying to get some meds so I can go in with a list to my doctor. I appreciate your help! [ more ]
Bodoni I have congestive heart failure. I take Coreg and Zocor. For blood pressure - I take Linsinopril. I have no problems. My blood pressure is a bit too low. I get a bit of lightheadiness, but presents no real problems. By the way I have a Koch Pouch. By Dr. Joel Bauer. Mt. Sinai in NYC. [ more ]
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J-Pouch ForumsGeneral Discussion
Prolapsed hemorrhoid/skin tag? - UPDATED! :)
SpookySpooky
Spooky Hi Grace, I have two external skin tags that don't bother me at all. The newer issue I have is the hypertrophied anal papilla, which - in terms of the most simple description - is basically an internal skin tag which has prolapsed and is now protruding through the anus with bowel movements and needs to be manually pushed back in. It's not a hemorrhoid, however it does become irritated and sore. It's also not likely to shrink spontaneously from what I have been told. My surgeon is reluctant... [ more ]
GraceB Hi also have a skin tag. I noticed it one year after my j-pouch surgery. My surgeon told me just leave it alone. Now it's been 8 years since surgery the skin tag is just a little larger but doesn't interfere with bowel movements. When I have pouchitis it seems to get a little larger. I am still not able to gain weight. There are just certain foods that I just can not eat. I spoke to nutritionist, she told me try other foods with baby steps. I have been trying to do that but than I always... [ more ]
Spooky Well I have an answer. Not a hemorrhoid or a skin tag, but a Hypertrophied anal papillae. Totally benign. My surgeon says normally he'd just snip it off, but I'm not an average patient and he doesn't want to risk infection close to the pouch, so we're going to leave it for now. Often they do reduce on their own, according to him, so we will leave it for now and just monitor. He did prescribe cortisone for week just to see if it helps, but otherwise nothing to do. You learn something new... [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch being created October 3rd!
NickPNickP
Pilot Debby I am sure that you will be fine! My intestines were in very bad shape I ended up having a perforated colon with many ulcers in my large intestines. As bad as my intestines were I got to have my j pouch about a year later in 1994. The things that stick out in my mind the most is to make sure once your j pouch is connected and things starting flowing through is to make sure you have a good barrier of paste around your rectum, because your but will burn if you do not. Do not go crazy on food no... [ more ]
valli Regarding ilex cream where is the best place to purchase it from. I looked it up and Walmart sells it for 21.99. Trying to locate it in Canada. But even 21.99 is expensive then add exchange on and its going to cost me $27-28 for a 2 once tube. Which I fear will not last me long since I am going up to 20 times a day. Thank you guys for the suggestion. [ more ]
valli ❤️
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Older J-pouch Guy here
therealstingertherealstinger
GraceB I have had my j-pouch for 8 years. Surgery did not go well. Lost 35 lbs. have PSC, bronchioistis severe leg cramps, osteoporosis, I am a small woman to begin with. I am down to 94 lbs. Hard to digest food. Take a lot of vitamins. Prolia injection, At least 1x during week I take an oxycodone I take atovan at night to sleep and take Lomotil in morning also vsl#3 packet. I get depressed often I had asperated pneumonia this past winter. I feel like I am falling apart also. I have always been... [ more ]
drone3 I'm 37 and have had my j-pouch for 25yrs. Currently on Humira and MTX, I do worry about my long term health as my arthritis has progressively got worse over the last 4 years and subsequent fatigue has really slowed me down. If I don't get at least 7.5hrs sleep I'm an absolute train wreck. [ more ]
lablover My hubby is 59 and has had his pouch for close to 25 years. No other issues other than having to wear a brace on his knee, back issues (but he does weightlifting to try to stop that issue) and gets pouchitis 2 to 3 times a year. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Pat down at the airport
LesandiegoLesandiego
skn69 I travel a lot, and all around...I get patted down nearly every single time (underwire bras do that)...I couldn't care less...I get the x-rays and the 'puffers' too...I figure that if they take my x-ray then I am entitled to look at it and ask that they show them to me Once or twice I have refused to be patted down by specific people and have asked for someone else (a good looking guy?) but I always do it with a smile. Now I go through mostly in a wheelchair...I get bugged a bit less...but... [ more ]
danny Dud ❤️
Jan Dollar I have never have had issues with full body scanners. Sometimes I get randomly selected for explosives screening. As for the water bottle, I just bring an empty bottle and fill it after security. Jan [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Pressure
AngiebAngieb
Raj I havent tried metamucil, I just take pysillium husk raw. Also I take one probiotic a day just to help digestion. I find bananas , whole wheat breads , oats and potatoes to be best bulking food. For all my carbs I'll just have them. Also salads make me go more often . So you can see if its the fresh fruits or veggies in your diet thats causing gas and loose stools. [ more ]
Angieb Perfect thank you [ more ]
CTB23 I use Benefiber and I do well on it. I also like it because it has no sugar. My surgeon had told me when I started with it that it tends to cause less gas. [ more ]
See all 6 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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