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J-Pouch ForumsK-Pouch Korner
notes from a k-poucher of 40 years
D dgs
dpol Had mine done at Mayo in 1975. For 37 years no problems that required a doctor and I stupidly did not even know any doctors who even knew what a Koch Pouch was. Then all of a sudden I couldn't get my tube in, not good! My opening had gotten too small to let the catheter in. The wonderful Dr. Beart , who got to Mayo a few years after my procedure and is now retired, went in and spread the opening out. Dr. Beart was not sure how long the fix would last as it was a very unusual problem, but it... [ more ]
dgs 40 years with no revisions, impressive!! Wow! Wonder how many others out there with their original procedure? [ more ]
Arlene B66 So nice to know that I am not the only 40 year Koch poucher. I have a friend who is also 40 years, she has never had a any additional surgery for her pouch. I love to hear what works & what doesn't. Thank you all [ more ]
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J-Pouch ForumsHelp! Need advice now!
12-year old son - decision on colectomy & j-pouch
C CureJLB
lablover No advice..just cyberhugs. [ more ]
Caroline's dad Our doctors recommending removing the rectum as well. From what I remember from our numerous discussions was that the existing rectum could develop UC as well. Believe me, my wife and i wanted to preserve every bit of her as we could but ultimately we had faith in our surgeon and GI Dr and we took their advice. In the end we're glad we did, although I'm told Chrone's can develop in UC patience, it is very rare, so removing her colon and the rectum, even as barbaric as that sounds, has given... [ more ]
CureJLB Hi, Kim A. I'm glad our experience is helping others. Where is your son having the surgery? We are getting close to making a decision ourselves. Good luck with the surgery this week and please let us know how it goes! [ more ]
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J-Pouch ForumsGeneral Discussion
thoughts on going from a j-pouch to permanent ileostomy
B blood_stained_warrior
Mysticobra An end ileo put an end to my misery. And I was miserable. Period. All I'm gonna say. Richard [ more ]
BillV I would like to add information about the K pouch and BCIR stomas. They are identical for both procedures and are located 2-3 inches lower than a conventional ileostomy stoma. Unlike a stoma that must protrude into a bag to work effectively, the K pouch/BCIR stoma is flush with the skin and slightly larger than the ¼ inch (30fr) diameter catheter used to empty the pouch. This stoma is typically covered with an absorbent dressing or cover, and since there is no external bag that expands when... [ more ]
TE Marie I had my j-pouch for 5 years before I was first diverted to a permanent ileostomy. 6 months later had it's removal which included the removal of everything else south of it and received my barbie butt. The thought behind the initial diversion was that maybe my j-pouch would get better once there was no waste flowing through it. Wrong as I continued to struggle with it. When it was then removed the pathology report showed it still had pouchitis and cuffitis. I had a horrible time with my temp... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Help!! Need Bowels to wake up after c-section!!
J JLG5045
Andrew A Hi all, My wife just had a c section with our first child. She has a j pouch from 2010. The baby is doing great but my wife is not. 24-30 hours after the c section, she started having extreme pain in her stomach and her stomach was very swollen. After CT scans and x-rays, they thought she may have a blockage but haven’t said definitely. After getting a tube 36 hours post c section, she improved for the next 6 hours but then got worse around 42 hours post c section, with severe abdominal pain... [ more ]
Sonoma-Erin I had the same with the first, "its not like a GI surgery" they said "here is a sandwich" they said on day 2. Immediate blockage with additional hospital stay of 8 days. My doctor said this time treat like a bloackage or GI surgery and go soft foods only for a while. How many days did everyone elses take to wake up? [ more ]
maddie18 I have had a ton of surgeries and i have never heard of Protonix. Why isn't it offered? Has anyone else tried this? [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
C-Section and Fears
N navg
Andrew A Hi all, My wife just had a c section with our first child. She has a j pouch from 2010. The baby is doing great but my wife is not. 24-30 hours after the c section, she started having extreme pain in her stomach and her stomach was very swollen. After CT scans and x-rays, they thought she may have a blockage but haven’t said definitely. After getting a tube 36 hours post c section, she improved for the next 6 hours but then got worse around 42 hours post c section, with severe abdominal pain... [ more ]
Annikki i was told by my GI doctor that I had to had a c-section due to risks of rectal damage with a vaginal birth. This was confirmed by the maternity doctor during my first pregnancy. I had two successful c-sections. It was recommended to my not to have a third pregnancy due to my high risk pregnancies. My babies are now 11 and 7! [ more ]
JillM I have a perm ileo and my high risk OB said that a c-section would allow him to plan to protect my gi system, whereas if i tried a vaginal delivery and needed an emergency c-section he would not be able to take that extra care. 2 very quick, uncomplicated c-sections. [ more ]
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J-Pouch ForumsGeneral Discussion
Tips on Gaining Weight?
KalynKalyn
Bloke I struggle gaining weight as well. I work out regularly and it is a struggle to keep weight on after my J-pouch. I find that protein goes through me very fast and haven't noticed any significant weight gain from using it. It does help with muscle recovery though so I do use it. Granted I am taking it after working out and not before bedtime as others suggested. I feel like I eat all I can and if I eat any more I would spend the rest of the time in the bathroom. I have resigned myself to... [ more ]
CTBarrister Peanut butter and bananas are always good add ins on a protein shake that will juice the calorie count. I think Kalyn's weight is headed to 120 very soon. [ more ]
JHendrix The dietician I saw post surgury suggested protein shakes as well and add milk powder and peanut butter. It seems protein is key. But, in my experience, 'careful what you wish for' (ha ha!). [ more ]
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J-Pouch ForumsGeneral Discussion
gas pain & gas-x
FM Former Member
ALX_ooo Just. Thank you all!! Having severe gas pain & unable to pass-?? Helps to have my j-pouch fam. 🙏🏼😘 [ more ]
Former Member Things are returning back to "normal" after having stopped the gas-x about 24 hours ago. Thank god. I agree, I'd rather have loose BMs than be constipated, that tends to give me more pain (from trying too hard to go to the bathroom) & loose stools seem easier & faster to fix than being constipated (seeing as I won't take laxatives or stool softeners) [ more ]
Spooky Sometimes when you stop a medication, it can take a few days for the effects to wear off. For instance, if I take even just a couple of imodium tablets, sometimes the effects last well into the next day. If you were taking gas-x regularly, you may not notice any real difference for several days. Basically, you're aiming for a good balance. You certainly don't want to have diarrhea or high frequency, but you don't want to get bunged up either. Personally, I'd rather my stool not be too solid... [ more ]
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J-Pouch ForumsGeneral Discussion
Year and 2 months post down - still cramps
K KC23
TE Marie Google it up as it is nasty. You can do a stool sample and test through any doctor. My GI just did it during a scope. In the past my primary doctor tested me for it. This was when I still had my colon and things got worse after Cipro. Some medical professionals don't think colonless people can get it but they are wrong. There's many a topic on here with us discussing it. [ more ]
KC23 I’ve never had c diff, idk what that even is. Haha I have had pouchitis numerous times.. I was just in the ER and had a scope done in April and was told that my j pouch is really narrow but that’s about it . It wasn’t my surgeon who performed it tho.. I called them today bc he wants me to continue thru him since I’ve had so many issues. So I see him Thursday, I may as well have never had the 3 surgeries done lol. [ more ]
TE Marie I think you might have c.diff. I was about as far out as you are from having my last j-pouch surgery when my GI did a pouch scope and also tested my stool for c.diff. I had it and had a tough time getting rid of it. I was also diagnosed with cuffitis at the same time. I had c.diff when I had my colon and they said it was brought on by taking Cipro. I can't take it anymore, As Scott suggested you need to see your GI. Hope you are feeling better soon. [ more ]
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J-Pouch ForumsHelp! Need advice now!
what could this be
pennie07pennie07
pennie07 CTBarrister Thanks for your reply. I went yesterday to see the surgeon - had an appt. my CRP was high and iron level low as well as ALB. They don’t really know what it is either, but they said maybe pouchitis so they gave me some cipro to take. They asked me to take loperamide in the evening before bed but I haven’t been doing that. I started cipro yesterday. Surgeon asked me not to take the Pentasa enemas together with the cipro because then they won’t know which med actually helped treat... [ more ]
CTBarrister One last comment - be careful with loperamide. It can make pouchitis worse if you are taking it with antibiotics (overthickening of stool) and it does absolutely zero for the inflammation. It gives you the illusion that because you have less BMs and no leakage, it’s treating the problem. It’s not. It’s just slowing things down and by doing so, possibly making the inflammation worse if it’s not otherwise being treated. I have extreme sensitivity to loperamide when combined with antibiotics... [ more ]
CTBarrister Ulcers are inflammation or a manifestation of inflammation so as far as the Doc saying it’s not pouchitis and it’s not Crohn’s - the question is what is it then? Incomplete evacuation in my case always was a hallmark symptom of pouchitis or inflammation of the Pouch. I believe the Pouch isn’t as elastic when inflamed. If you look at an MRI the walls of the Bowel thicken where it’s inflamed. This was observed on my MRI Enterography at the J Pouch inlet and was attributed to backwash ileitis,... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blood in Stool Occasionally
PSJPSJ
TE Marie In addition to the above it could possibly be cuffitis. It is what caused blood in my case. I hope your scope goes well. [ more ]
PSJ Thank you for your replys! [ more ]
PSJ Crohns runs in my family but they assured me.before surgery that was not it. The blood is not too dark but I need to get checked. I think I just don't want to get any bad news after years of things going better. Remicade tomorrow and I never stopped just went gradually ro 12 weeks between and decided it was a mistake. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hydrosalpinx
CD Celsie Denise
Mo I was diagnosed with hydrosalpings before I had my daughter. I was told both tubes were filled with fluid and I would not get pregnant without doing IVF. So I had surgery to cut and cauterize the tubes. They were going to remove them but there was difficulty in doing so. I then went through IVF to have my daughter, who is now 12, but it only worked once even though we tried for another! Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
No bowel movment on toilet
HajiHaji
CeeeeCeeee Some of my friends have raised toilets because it is difficult for them to stand up after using a toilet which is closer to the floor. I hate them (the toilets/not my friends!) because I empty my J-pouch so much easier if I'm squatting in a lower sitting position. The "squatty potty" would help in these circumstances. My own toilets are low to the ground purposely! Young children are very appreciative, as well! I installed grab bars for those who need assistance standing up from a lower toilet. [ more ]
CTB23 I was listening to a doctor on NPR about squatting when having a bm, not necessarily for pouches, but just in general. Reminded me of the squatting toilet at Narita Airport in Japan. He went on to discuss how we've been basically toileting the wrong way. So I looked up squatty potties on line. Basically a stool you put in front of the toilet to assist in squatting to empty. Looks like a good idea and an easy and inexpensive possible solution. [ more ]
Jan Dollar If the above does not help, some other things to consider: Sounds to me like a mechanical obstruction, like some sort of positional prolapse or intussusception. This can develop over time due to overstretching of the pouch and internal scar tissue. Scoping may show nothing amiss, but defagraphy may show your defect. Perhaps it is as simple as the height of your toilet. Have you tried putting your feet up on a small stool? Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Follow up
K Katz
Scott F People differ on how often a pouch should be scoped if it’s causing no trouble. The remaining rectal cuff does have some risk of developing dysplasia or rectal cancer, so some sort of screening probably is warranted. A pouchoscopy is quite easy assuming 1) the prep isn’t overdone, as if for a full flexible sigmoidoscopy, and 2) you skip the sedation. Even with that I go several years between pouchoscopies, and that’s with antibiotic-dependent pouchitis. And this is even though my endoscopy... [ more ]
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J-Pouch ForumsGeneral Discussion
UC is gone but now Inflammation in other areas
B Bubba1028
Bubba1028 She said it's all related to the body's inflammatory response due to the colitis. When I met with my doc, she suggested I start biologics, bc of two reasons: 1) my bone density test came back lower than it should for someone my age, so she doesn't want to put me on pred to kick this inflammation and 2) I can't take NSAIDS like large doses of ibuprofen like she would normally prescribe as a first attempt to kick the inflammation. So, last week I started with Cimzia, which is a biologic... [ more ]
Native nvmnd, just read your last post. disregard my post haha [ more ]
Native how far out from surgery are you? were you on high dose steroids prior to your operation? after my first op I had an adrenal crisis from long term steroid use about a week or two after surgery I could hardly get out of bed, hurt all over, short of breath, etc. may not be that at all especially if havent been on steroids lately however stress of operations and illnesses can cause it as well. idk, just a thought. i did a long taper of steroids over 2-3 weeks and after the first dose it was... [ more ]
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J-Pouch ForumsGeneral Discussion
Another Update - healing issues
lovethatgreylovethatgrey
Aimc Lovethatgray, I'm so sorry to hear about another delay for your husband. I know it stinks, but he will get healed and have his takedown. Hopefully after whatever healing period for this next operation. Keep your head up. Keeping good thoughts for you both. Aimee [ more ]
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J-Pouch ForumsPouchitis
Potential Pouchitis Cure
CethCeth
Nancy1958 ❤️
drone3 Just adding to this thread that I have been trialing Sovereign Silver 10ppm and it has been very effective in minimising pouchitis and gas. I have only been taking 3 teaspoons 1st thing in the morning, afternoon and before bed but it has been very effective and gentle on the gut as Ceth mentions. I'm curious to know if i could take 3 teaspoons a day and not get argyria? Would resort to the enema if required but would rather avoid it, if possible. [ more ]
Francois Still no updates from the ones in the Alicaforsen clinical test ? [ more ]
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J-Pouch ForumsGeneral Discussion
Is this a partial blockage?
K KonaBlue561
KonaBlue561 Saw my GI yesterday and he also brought in another GI to go over my "attacks". He does feel it's a bile duct blockage of some sort. He was asking if I had liver enzymes checked at all which I haven't. He also asked if my urine had changed color during the attacks but I never really paid any attention. He feels there's another issue beyond my gallbladder ejection at 3% being the cause of the attacks as they are so far apart. The fever, he explained that he thinks bacteria is being pushed back... [ more ]
Scott F That’s good diagnostic progress, Kona. I encourage you to remind your GI about the high fevers, since they may paint a different picture than the same results without fever. Good luck! [ more ]
KonaBlue561 I haven't seen my GI yet but was looking over the results from the HIDA scan. "A homogenous distribution of radiotracer was noted throughout the liver. No focal photopenic defects were noted. Activity was noted within the gallbladder at 35 minutes post injection. Activity as noted in the bowel at 15 minutes post injection. Normal drainage of activity was noted from the liver. Subsequent sequential imaging was performed following IV administration of 1.6mcg of CCK. The gallbladder ejection... [ more ]
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J-Pouch ForumsGeneral Discussion
From temp ileostomy to permanent (need advice)
P phonix2g
TE Marie It sounds like you'll be getting rid of your j-pouch and have a Barbie/Ken butt. I too first went to an ileostomy and left in my pouch but 6 months later had my j-pouch removed. I had permanent ileos both of these times and had a temp ileo in-between my j-pouch surgeries The difference is like night and day with the permanent ileo functioning much better. It took a good 6-8 months before my rear end was ready for non padded seats. I had 2 cushions from medical supply stores. I left one in... [ more ]
phonix2g Thanks Bill, That's some good info! Yes I've heard of BCIR and me and my surgeon have discussed it before if I decided to have the pouch removed. I'm not sure he's an expert in that field I might have to consider another surgeon but it's definitely something to consider. I like the idea of just having a catheter without a bag as it tends to get in the way often and does get quite annoying if there is alot of gas. I've had many issues with leaks which would ruin a day old wafer. Also makes... [ more ]
BillV From what you have posted, I am assuming that your latest surgery left your j pouch in place and created a temporary ileostomy. Since it appears that you have made reasonable attempts to get your j pouch to “behave”, removing it at this point is a reasonable decision. I cannot personally compare a temporary with a permanent ileostomy since I only had a temporary over 35 years ago as part of my j pouch surgery. I was so glad to see it gone. A malignant polyp and recurrent high grade dysplasia... [ more ]
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J-Pouch ForumsGeneral Discussion
18 years later
ConnieConnie
CTBarrister I had a similar issue in childhood (and after contracting UC), although it was later determined to be a genetic issue. The pain was due to my urethra being too narrow. I had a surgery to widen it. Ironically my sister had to have the same surgery done for the same reason and she never had UC. As IBD patients we hear the term “stricture” - to my understanding what the problem was is that my urtethra, genetically, was not wide enough to accommodate the urinary traffic going out. So I guess it... [ more ]
lablover ..man..it is tough enough for adults! To go through it as a child.Ugh [ more ]
cas Although my son never had j-pouch he did experience burning and slow urinary stream intermittently. Turns out he had a stricture for unknown reason. Has been doing great since the surgery 11 years ago. [ more ]
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J-Pouch ForumsGeneral Discussion
Any positive j pouch stories.
C Coloncutie719
Annikki I have had my pouch for 19 years and live a pretty normal life. 2 kids, SO, work two jobs, travel, hiked, cycled. I have the occasion minor issues, very occasional night leaks usually because of something I ate or drank. I did develop Enteropathic Arthritis last year but currently managing it with Sulfasalazine. [ more ]
lablover Hubby has had his for close to 24 years. Lets just say he is healthier than when he had colitis. Knock on wood. [ more ]
Kushami I had 15 good years with my j-pouch (the first year of recovery was a little rocky of course). I could eat what I wanted, except for very high fibre items, but I did have to avoid alcohol because it made me extremely dehydrated. I had mild pouchitis a couple of times a year – maybe a day off work. I also had to take Metamucil before every meal, but I worked out a system and carried supplies with me. Providing I stuck to my diet and medication regime, I felt fine. I worked full time, did... [ more ]
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J-Pouch ForumsGeneral Discussion
Intermittent fasting
D Dave1
skn69 Spooked, I have had a k pouch for 39 yrs...(only difference with a j pouch is just the exit strategy)... So I have tried pretty much every diet and eating method out there. My mom would jump on any fad that hit the media including the very dangerous 30day fast...took me along with her on every one. (Maybe she thought that one of them would "cure"me?) All I can tell you is the very best tool for figuring out what does and does not work for You is a food diary and a crash course in basic... [ more ]
Letlive27 I have tried the fasting protocols of the Snake Diet on You Tube. I did a 49 hour fast last week, but should have just kept going since it didn't really bother me. I just started another fast today and hope to make it 72 hours. I drink my electrolytes of potassium, magnesium (Epsom salt; food grade), and sodium (from baking soda & Himalayan Salt) in a couple of liter bottles a day. I mixed a pinch of cayenne and cinnamon in too. I sleep terribly getting up 4 to 6 times a night. I have... [ more ]
GrannyJ64 Valli, I have had my pouch for going on 16 years. I actually made no changes in my diet. I eat whatever time I want and still eat sugar and vegetable and fruits and even popcorn! I did not eliminate anything from my diet. I have had pouchitus a few times and have had blockage problems that were all mechanical not food based because I have problems with scar tissue from surgeries. I have had 3 scar tissue surgeries in 15 years. I have also always had complete control of my pouch. I have... [ more ]
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J-Pouch ForumsGeneral Discussion
New to group...subjects I haven't seen discussed much
GrannyJ64GrannyJ64
Letlive27 I too had my colon removed with the j-pouch made in Sept of 2002, with the hook up in Feb. 2003. I had an adhesion surgery in 2005 and two incisional hernia surgeries where the stoma was. I have been iron anemic since I got hooked up to the j-pouch. My B-12 and protein levels have always been good. I have been on Remicade, Humira, another one, and now Entyvio. I had a reaction to the iron glucose, so I have to endure three IV's of iron sucrose. I pushed to have surgery a couple of years ago,... [ more ]
lablover My husband has had pouchitis on and off throughout the years (he has had his pouch for close to 24 years). He takes VSL#3 and when he does get it, he takes antibiotics. Just make sure it doesn't get out of hand. [ more ]
Bubba1028 Welcome. You’re def using the site correctly. It’s a place where people can post their questions and help others by making comments. Mad dor your questions, I can’t say bc I have a fairly new pouch -9 months - and haven’t had pouchitis. I hope others will comment to help you out! [ more ]
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J-Pouch ForumsGeneral Discussion
Employee Accommodation Request Form
ML Midnight Lady
Mysticobra Working in a union environment or having a union back you is good. But it's completely different than a non union environment. Where I work everyone is paid and treated equally under the contract. Nobody has special hours and that flexibility is absolutely not allowed. Now if it were a non union shop I'm sure rules could be bent. You could get the president to write a letter and it would make no difference in what hours you could hold where I work. We have set bids and hours and it goes by... [ more ]
Bobish Oh.. And just did a bit of googling. In the UK we call it reasonable adjustments. You guys call it reasonable accommodations and it's part of law. So if possible I'd reference that subtly. Something like 'so far I have greatly appreciated the reasonable accommodation you have made based on the advice of my surgeon'. You get the idea https://www.eeoc.gov/facts/ada18.html Hth [ more ]
Bobish I would get the letter from the doc and submit it. Make it clear that you are not refusing to work within the specified working day, but your revised hours have made it easier for you to be significantly more comfortable and productive at work and you feel strongly that this arrangement (as recommended by your doc) should be allowed to continue for both you and your employer's benefit. If possible highlight any further advantages of your working later in the day (extended levels of customer... [ more ]
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J-Pouch ForumsHelp! Need advice now!
5 months post take-down blues
J Jfill21
Kushami Seconding the suggestion for psyllium husk powder – the fine stuff. I took a couple of teaspoons mixed with a small amount of water immediately before main meals. I found it had a cushioning effect. Made BMs less liquid and reduced butt burn. Also, I found things kept improving for the first 12 months. At 6 months my BMs reduced. Hope things continue to improve for you too. A year-long recuperation is quite a project :-) [ more ]
Jfill21 Hey Sunflower! Thanks for asking. I’m better now than I was a month ago. Two weeks ago my surgeon’s nurse prescribed a week of Flagyl which helped calm things down. The butt burn is mostly under control and frequency is down a bit. Still not where I’d like to be at 7 months but haven’t lost my optimism. I continue to do pelvic floor exercises (along with regular exercises and light weights) and trying to add more foods to my diet. I still don’t feel like my pouch is completely emptying in... [ more ]
Sunflower70 Hi JFILL! Just wondering if you are doing any better. I hope so. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Constantly Bloated
J Jawesome
Kushami Hello there, Did your surgeon make any specific diet suggestions? The healthy diet of someone with a colon may not be suitable for someone with a j-pouch, especially when you are only 4 months in. I had to stick to a low-fibre diet for most of the first year – no raw fruit or vegies, no high-fibre legumes (e.g. lentils, chick peas), no cabbage or sprouts, minimal onion (and make sure it was well cooked), no hot chilli, and no nuts or seeds. I stuck to well-cooked vegies, stewed fruit... [ more ]
Winterberry Hi, Jawesome. Also look up food combining. This is where certain food groups eaten together can cause fermenting in the stomach and can lead to bloating and gas, and other digestion upset. For instance, protein (meat, chicken) eaten with carbohydrates (potatoes, pasta, white rice, white bread) is not recommended because it can cause a range of digestive rumblings. [ more ]
Bubba1028 I agree with Te Marie - someone suggested the Beano pill. I take that before lunch and dinner (gas isn’t an issue for me in the am). It has gotten better the farther I get from the surgery, so there’s that to look forward to. Hope you find some relief soon. [ more ]
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J-Pouch ForumsGeneral Discussion
NSAIDs and jpouch/pouch removal
n/an/a
n/a My podiatrist gave me a compounded medication for my foot pain, which I also tried on my hands. She said it was similar to voltaren and that it worked topically. My bottle, which is 4 yrs old now, says "anti-inflammatory (Diclof./bacl/bupiv)". It didn't work, I didn't get it refilled. The pain is still there, getting worse in my hands. I did have my pouch disconnected with an end ileo, planning to have the pouch actually removed this year sometime. [ more ]
Tanner Did you use the Volertran gel? [ more ]
Tanner Re: NSAIDs and jpouch/pouch removal [ more ]
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J-Pouch ForumsGeneral Discussion
Aphthous ulcers in pouch
MloRNMloRN
RinaJP Hi MLORN, My feeling is that if the CD is treated early with biologics from the get go, you may be able to prolong your jpouch as it is just inflammation at this stage. The game changed in my situation when my CD produced a stricture close to the jpouch which cannot be taken out without taking out the entire jpouch. I currently am on a mixture of food, TPN, and oral enteral nutrition for about 2 months because of the severity of this flare. My doctor here thinks that she is still able to... [ more ]
MloRN Thank you all for your posts. Rina I’m sorry to hear your in the hospital. I am really hoping it doesn’t come to that for me, but my initial disease coarse was so severe. I spent 5 weeks on TPN only & was hospitalized 10x in a year for blood transfusions, and unexplained high fevers. I even spent weeks in patient for toxic megacolon. It was awful. I had my ileostomy for a year and a 3 months & I was not a fan, however it beat the alternative. It just scares me to think of all I went... [ more ]
RinaJP Hi MLORN, I have a Crohn's diagnosis about 14 years after my pouch was created and am currently in the hospital facing surgery back to a permanent ileostomy. For the last three years, I suffered from being unable to eat which caused malnutrition. During that time, I only had ulcerations at the anastomosis, but I also have severe symptoms of dyspepsia that went undiagnosed. During that time, I did go through a number of tests that also tested for Crohn's, but it did not point in that... [ more ]
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J-Pouch ForumsHelp! Need advice now!
VSL#3 Info
S ScottV
Scott F VSL #3 DS (double strength) is by prescription only. They may be calling this VSL #3 900 now. The regular strength packets, now called VSL #3 450, have never required a prescription. Some insurance plans cover the prescription-strength product. A savings card can be found here: http://vsl3ds.com Good luck! [ more ]
GrannyJ64 I too recently started using VSL and only prescribed one packet a day. My pouchitus is pretty bad and I have finished the cipro. still using canasa though. It looks like maybe I should be using more than one packet a day. Also wondering if anyone has been successful in finding a cheaper way to get it. I paid $85 for mine and it isn't the strongest which I really want to switch too. I thought it was prescription but the pharmacist said it isn't , so very confused on that matter as well. Thanks [ more ]
Scott F VSL capsules are okay compared with most health food store probiotics, but one or two capsules per day is a pretty low dose for preventing pouchitis. I take four double-strength packets daily, which is a high dose, equivalent to 32 capsules daily. It’s certainly true that Cipro isn’t good for the probiotic bacteria, but it doesn’t kill all of them instantly. It seems like I still get benefit from the VSL, in spite of the Cipro. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Fistula
A Aimc
Aimc Thanks, I keeping everything crossed it stays that way [ more ]
JHendrix Congratulations. Happy to hear a success story, especially when it comes to a fistula. [ more ]
Aimc The fistula is healed. I ended up having surgery. Thank God no more gastrograffin enemas. Wow no one should have three. [ more ]
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J-Pouch ForumsPouchitis
Succes with antibiotics?
N Nicolajs
Karenchase Yes, you're right. I guess in my own brain I call it "chronic recurring," though I have heard my health care professionals use the word "refractory" when referring to my situation, simply because while the antibiotics manage the effects of the inflammation while I'm taking them, I can't stay off them and stay healthy. I prefer not to be on antibiotics all the time. I always thought that the probiotics would mitigate some of the irksome effects of the antibiotics, but if the antibiotics are... [ more ]
Scott F Karen- If your pouchitis responds well to Cipro then it (fortunately) isn’t “refractory,” it’s just chronic. “Refractory” means unresponsive to treatment. My experience suggests that VSL helps even when on Cipro. It may be because my VSL dose is so high, or because I space them out, or because I’m imagining things. I’d suggest doing the experiment for yourself - your doctor is guessing about the Cipro killing enough bacteria to make the VSL useless, since no one really know how this stuff works. [ more ]
Karenchase I have recently come to realize that I, too, have what's known in the parlance as "chronic refractory" pouchitis, meaning that I get inflammations in the pouch that must be treated with something. Lately I've been taking cipro for 2 weeks, then stopping. Usually I can go about 2 weeks before I have to go back on. I've been using VSL#3 as well, only 2 pouches per day. My GI recently told me that I shouldn't take it while taking cipro, since the cipro will likely kill off all the good bacteria... [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Prednisone and pouchitis
MN marc nolan
TaraMcP Oh, and Im a fulltime Remicade infusion nurse manager, who literally thinks, lives, eats and breathes this life and disease... and i truly feel ive tried everything and its just not meant to work out. Im always super positive and im getting more and more ok with a permanent ostomy [ more ]
TaraMcP Marc, My story is almost identical... a very rough daily 3 yrs with my pouch. Ive tried everything, every diet, antibiotic, pred, stelara. Hindsight the best years physically were with my ostomy.... maybe we should both throw in the pouch and go back??? I want to, im so close... my life is dependent around my shitty pouch. Cant eat, cant sleep, cant work out, meds meds meds... gaining weight. They say cd, they say pouchititus.. or both? Whats your plan? I need inspiration too Tara [ more ]
marc nolan C Diff has been ruled out. Cipro was working at the start with Prednisone but once I tapered off the pred it came back, so we switched over to Tinazadole which I have been on 7 days, it does not seem to be not working. [ more ]
See all 18 replies...
J-Pouch ForumsOstomy & Skin
How to heal broken bones
skn69skn69
skn69 Al, I have cut down on the smoking to about 8 cigarettes/week...so that is good...doing my breathing, Pilates and yoga about 5 days/week and I have gently started walking again (mindful walking... I feel like a 1yr old taking my first tentative steps...slowly and very carefully) this accident has aged me dramatically. I finally admitted to my PT that I am scared to go outside...scared to slip and fall...2 years of hell and 2 accidents have gotten the best of me... I am no longer bulletproof. [ more ]
AI_matrix If you're going to smoke I would try vaping? not nicotine, perhaps CBD? Is that legal In the wine country? If your healing, I would recommend yoga, meditation and trace? I quit my job and starting practicing more of these eastern medicines and for the most part - l like it! and its totally free [ more ]
TE Marie Speedy recovery my friend! You will heal. [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone ever have throat ulcerations?
C concertboy
raphael Concert, I have had the exact same throat issues you described twice in the last 2-3 years. Both times a round of prednisone cured it after a few days. I experienced major relief after the 1st day each time. I hope you are feeling better! [ more ]
concertboy Thanks for the reply Scott, I'm on day 4 of 7 on Pred and feeling so much better. Really encouraging to hear you only had it once. Fingers crossed! [ more ]
Scott F I had throat ulcerations once after a major stressor (car accident). They lasted a week or two and never came back. A short course of prednisone might work better than you think. Viscous lidocaine (kind of gargled) could help the pain significantly. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Kenalog injections!
T TomU
TomU I think Kenalog is used at the Mayo Clinic for this kind of thing, which is why my consultant uses it. I'm not sure of its success rate though. It is predominalty an anti infmamatory but must have somd anti spasm qualties to it i'm assuming. [ more ]
Scott F Kenalog is a surprising choice to me. Botox is sometimes used, generally if the sphincter spasm is causing anal fissures. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Healing issues
lovethatgreylovethatgrey
lovethatgrey Hi AIMC and thanks for your reply. I'm glad his surgeon is waiting and not rushing things. We'll wait as long as necessary to have the best outcome. Thanks for the tip. [ more ]
Aimc Hi, my takedown surgery was done on May 15th. It was originally supposed to have been done Nov. of 2017. I had a fistula. After waiting and hoping it would heal itself, it didnt. My surgeon put a stitch in the fistula and after more time to heal, it finally did. I'm sorry you are both getting tired of the wait. I empathize, but it's really best for him to be as healthy and healed as possible because the early weeks of having the j pouch can be trying at times. I'm saying weeks because that's... [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Cuffitis help **PLEASE**
G grandmaof1
ccolbymontucky hopefully you are feeling great since this was a few months back! i've been there several times w/ "out of nowhere" cuffitis flares even with 5 years past and great pouch function. i know how badly that ring of fire burns. this is an amazing ointment that you need a script for and must get compounded but it works wonders! my amazing j-pouch surgeon formulated this: *ketam/lido/diaz/baclo 3/5/0.75/2%* it's ketamine, lidocaine, i think diazepam, baclorin (an antibacterial)...i apologize i'm... [ more ]
Jan Dollar The lidocaine jelly should work well enough to insert suppositories. Both Canasa and hydrocortisone suppositories are pretty much equally effective, but Canasa is much more expensive (brand name only). If it helps you to not feel alone, our deductible is $9600 for both my husband and me ($4800 each). Health care is our biggest expense. Jan [ more ]
Scott F Proctosol is for external use. It might be applied *slightly* internally to treat internal hemorrhoids, but never deeply enough to reach the rectal cuff. If the issue is that it’s painful to get the medicine to the rectal cuff, it doesn’t matter whether it’s cream, foam, liquid, or suppository, it would still have to pass through the anus for insertion. If the pain is simply too extreme for local treatment you could try oral mesalamine or oral steroids, and that might cleear up cuffitis for... [ more ]
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
Constant leakage
J Jessi
Jessi Taking lots of sitz baths! They help a lot. Hadn’t thought of the hairdryer. Thanks! [ more ]
Jessi Thanks for your reply. Yes, I’ve been doing kegal exercises since my second surgery on 12/26/17. I haven’t tried Imodium yet as my surgeon didn’t want me to. He asked that I try to hold off on that for now. I’m not sure why, but I’ll definitely ask when I see him Monday. I was reading that the Imodium actually helps absorb the water, so I’m wondering if that might be the solution to this annoying issue. [ more ]
Jessi Thanks for the reply, Scott. I’m using lots of barrier creams. I started using them as soon as I had my first bowel movement in the hospital after takedown. Just can’t seem to get ahead of the irritation. I was given Amoxicillin for the inflammation (allergic to cipro and Flagyl makes me very ill) but had to stop it after 8 days as I developed an allergic reaction. And yes, I am able to fart off the toilet sometimes. Usually if I am laying in bed. I don’t trust it too much yet. [ more ]
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J-Pouch ForumsGeneral Discussion
Toxin Given Off by E. Coli in gut possibly contributing to Ulcerative Colitis
R roseviolet
Scott F Thanks for sharing the articles, Rose. FWIW, I’ve not said anything about a relationship between Florastor and E. coli, or C. diff and E. coli. I’ve only mentioned an alleged connection between Florastor and C. diff. E. coli is an important, normal part of the gut microbiome. There are some strains that are harmful, though. It’s very, very difficult to kill or control the harmful strains without affecting all of the other strains. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Endoscopy EGD vs TNE (Transnasal)
R RML613
tulsamom No experience with TNE, but have had the endo with biopsies. Diagnosed with EE at age 52. How do we just develop such a severe allergy? I hope your test results bring you knowledge and a good path forward! [ more ]
Scott F It looks like a good technique, but you may have trouble finding a gastroenterologist experienced in performing the procedure. The lower cost might also be elusive, since that will have more to do with your insurance plan and the endoscopist’s billing practices than the hypothetical cost. In theory, though, eliminating the anesthesia should lower the cost to you. Good luck, and let us know if you manage to obtain this procedure. [ more ]
See all 2 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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