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J-Pouch ForumsGeneral Discussion
Costco is now limiting loperamide purchase to one box.
S slouchypouch
slouchypouch It's much cheaper to pay cash. Maybe 7 dollars for that same amount of pills. You are losing money. If you are in the USA, buy at Costco and buy OTC bottles. Another pro tip is check Costco for cash price on any medication you take chronically. Ask for 350 pills without insurance. It's often much much cheaper to pay cash and not use insurance at all. Buy a years supply. In the case of imodium the pricing I found was higher at the pharmacy (cash) than OTC in the Kirkland bottles but most of... [ more ]
slouchypouch Sorry this is way late but the epidemic insofar as patients is fabricated by politicians for votes. The CDC data is in plain sight for anyone to read for themselves. There are 50k more OD deaths today since 2011. Prior there were about 20k. So call it 70k. The new 50k dying are purchasing street drugs, usually heroin adulterated (laced) with Fentyl. It's terribly sad but it is not my fault or your fault. I take pain medication responsibly and don't need big brother creating a diarrhea... [ more ]
AARON I get 200 by prescription for like $40 [ more ]
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J-Pouch ForumsGeneral Discussion
Blood/General Discomfort in Rectum
E EmmanuelM
RHolt Hi there---I agree with the others that this could be an anal fissure, with the pain and bleeding. I think it is time for you to get a medical consult and figure it out that way. Have you gone? What did your doctor say? Pain with each BM and the # of BMs you have each day make this pretty unsustainable and uncomfortable. I hope you have sought medical help! (3 painful evacuations in the middle of the night each night would quickly make me sleep deprived and crazy!!!) [ more ]
EmmanuelM It's been steady since takedown but the burn/sting seems to be worse? [ more ]
Raj What is its colour ? Bright Red or Dark blackish ? I had blood once same on just the toilet paper, stark red coloured. It was because I had overdosed imodium and it constipated me. To get things out I started pushing super hard whoch eventually led to blood coming out. When I talked to my surgeon about it he said the straining can very easily cause little blood to ooze out. He advised me to make sure I relax myself everytime I sit on the toilet seat. Let the pressure build up. But if its not... [ more ]
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J-Pouch ForumsGeneral Discussion
Haywire Ostomy??? Just Got Out Of Hospital.
Clever1Clever1
duck11 I can't remember how they tested for norovirus--i think maybe they knew from the symptoms and that there was an outbreak of it going on. Either way, the IV and some hospital rest worked wonders. Jenjen I love your wording of "upside down"! So many doctors seem to treat us the same as people with colons "just drink more water" and its so true how fast you can feel crappy from electrolyte imbalances. [ more ]
JenJen Alan, Glad you got in when you did even if possibly a day late and hope you’ve gotten better by now. I get a similar isue about once a year it seems — I’ve deduced it’s probably a virus as for me it’s a much more severe reaction than with foods. I’ve been chastised in the ER for going in too soon and other times too late — most people with a colon, even med professionals, just can’t understand what we’re dealing with. Drinking more fluids, while helpful, can only do so much in a body with no... [ more ]
Mysticobra I know one thing. When I get diarrhea (and I know when I do). It doesn't hurt like it used to. It was so painful the regular way. (butt burn) I'm definitely not making light of your situation. Temp ileos are notorious for being a pain in the ass to deal with. I've had one. Permanent now. Having diarrhea with a stoma is of course something we have to monitor closely as it will dehydrate us quicker than a normal colon person. But even being normal we got dehydration from diarrhea. But being... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bleeding
P Pouchbro
Scott F My best guess would be cuffitis, but anything that erodes into a small blood vessel can do this. Have you had a pouchoscopy? Once treatments aren’t working then it’s especially important to reconsider the diagnosis. There’s a good chance that you’ll be fine until your GI appointment. If the bleeding recurs in quantity then that changes, of course. The ER is likely to be a very disappointing experience unless you’re experiencing life-threatening bleeding. Why do you think your doctor will... [ more ]
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J-Pouch ForumsOstomy & Skin
Skin irritation around stoma
R Raj
Art Te used a beeswax ring for awhile and tried various mounts;; sometimes the small pimple red itch but only having a stoma for about a year during the 3 gook u my J pouch surgeriesa ral red purple irriationkind of like dead exosed to the air flesh developed this was when my surgeon not my GI doctor recommended the Collagel seaweed tape and some form of seaweed based crème which worked very well and calmed the irritation down.....still had to go for fourth surgery due to the stoma herniating... [ more ]
TE Marie Good news - things have improved. Is the itching under the whole appliance or limited to around the stoma? If it's just around the stoma have you ever tried using something like a ring or paste around the stoma under the appliance? [ more ]
woodstock69 So to update, Coloplast are by far superior, the new sensura mio flip has few barrier areas and is soft compared to other convex, I also use their sensura convex both still cause some itching but I am starting to think it is the acid from food somehow. [ more ]
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J-Pouch ForumsGeneral Discussion
How many meds do you folks take to keep the diarrhea under control?
DavidReischDavidReisch
Bobish AFBUCHER in the UK even my local Tesco sells milled chia, so does Holland and Barratt and most health stores. Linwoods is a big suppliers Here or there is a choice on Amazon and almost too many sources to list Sure it's not the exact same brand, but it's all 100% chia. Some (like the chia seeds company) mix light and dark chia seeds like Mila too, but even if this does give the seeds a different nutritional spec, there's nothing to suggest it affects the pouch any differently anyway, and... [ more ]
Hesekiel Loperamide gives me constipation, so I don't take it. I do use toilet paper plugs, made of I/3 sheet of toilet paper. They have reduced my incontinence by half, and almost stopped incontinence at night. Also, to avoid incontinence at night I have dinner very early. I think most J-pouchers do. [ more ]
afbucher Hi Dave et al, I have found that cutting off my food of any kind as early as possible before bedtime helps tremendously. I use the toilet before I go to sleep and will typically wake up by 3:30 am to go once more (a little annoying because my alarm goes off at 4:30 am) I take natural Psyllium Husks and Mila (micro sliced Chia seeds) see the photos. The only place you can purchase Milled Chia is from this company: https://shop.livepure.com/mila/dt/GP00231 It may also be that you are still in... [ more ]
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J-Pouch ForumsPouchitis
Stone?
E eddysmummy
Hesekiel I have had something similar, that blocked the exit. At a following pouchoscopy there was no sign of any problem. It may have been caused by dehydration, I didn't drink enough water. Or/and temporary inflammation. Things have come right since, not sure why. [ more ]
Scott F One possibility that comes to mind is a thrombosed (clotted) hemorrhoid. That’s just a guess, though. [ more ]
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J-Pouch ForumsGeneral Discussion
Imodium
HE herb ear
Hesekiel I would phase it out, not stopping suddennly. I was sensitive to immodium and only needed half a pill. Then my digestion slowed a little and immodium started to give me constipation, so I reduced to half a pill, then a quarter and then stopped. No problems. [ more ]
Raj I take imodium if I have to go out and dont want to visit bathroom too many times. 1-2 imodiums max per day. But I can stop them very easily without any major effect. I am fine if I have to go every 5-6 hrs without imodium. Also imodium constipates me easily so I take it very cautiously. But maybe its the abrupt pause that caused you to have problems . Try tapering weekly one capsule. You'll feel definitely better. [ more ]
herb ear I stopped abruptly [ more ]
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J-Pouch ForumsGeneral Discussion
Medication Question
Linda2Linda2
Hesekiel I had some pouchitis (no pain with it) which increased over the years to severe. Last year I started using toilet paper plugs and right then the pouchitis disappeared completely for a year, is now still low. Years ago I heard that white food (like white flour) increases inflammation and dismissed that. But lately I have had indication that it might be affecting me, so I am on strictly whole food now for awhile to see. I take no medication. [ more ]
Linda2 Thanks 🙏 [ more ]
CTBarrister Yep it’s Xifaxin, which has worked well for me. Bottom line is you can’t stay on any one antibiotic and ideally should rotate 3 or 4 of different antibiotic families that you tolerate. For example you don’t rotate from cipro to levacquin as they are both in the fluoroquilone antibiotic family. My current rotation is Cipro, Flagyl, Tinidizole and Augmentin. Xifaxin is out only because there are insurance coverage issues with it and I only get a very limited supply per year. It’s a bit more... [ more ]
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J-Pouch ForumsGeneral Discussion
anal itching when having a bm
K KeepFighting(Manny)
Les This works the best: https://www.pranicura.com Also Cholestyramine for Oral Suspension USP Powder works well. Taken as needed for itching. The itching is created by the bile that is unabsorbed now that we don't have a colon. Also I think sweets bring on anal itching as well. Hope this works for you...it does for me. [ more ]
Bob Midden I've had intense itching at times ever since shortly after take down in February, 2000. I've tried to determine which types of foods cause it but have never reliably been able to determine. I believe it's due to some type of microorganism that develops in my pouch that I've developed an allergy to. Recently I've found that wiping with a Kandoo flushable cleansing wipe after using regular toilet paper has greatly reduced the frequency of these episodes and the intensity when they do occur. [ more ]
rachelraven Certain food in the beginning caused me more irritation and itching... like granola or too many nuts or popcorn. Made things like sand paper, coming out. [ more ]
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J-Pouch ForumsGeneral Discussion
Pelvic floor physical therapy
C colitisresearch
Raj Yes infact I would say it even matter what form of pysllium husk you're taking. I take raw form with no additive substance 100% natural. Many people prefer the orange flavoured one which has sweetners and colors which I didnt find as effective as raw form. Also you should look into foods you're consuming . I was going 10 times because I was trying to bulk and gained some 20-25 pounds in a few months. You should avoid sugars completely for first few months specially artificial ones. I had a... [ more ]
Scott F Psyllium husk (Metamucil, Konsyl) and Benefiber are both forms of soluble fiber, but people sometimes have better luck with one or the other. Benefiber never seemed to work for me, but psyllium husk seems to be my life partner. [ more ]
colitisresearch Thanks Raj- I was taking one Imodium daily to help with frequency. It helped a bit but I felt like it was making the rectal pressure worse. I was also taking benefiber but didn’t see any improvement. Is pysillium husk the same as benefiber? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Biologic side effects
B BS
CTBarrister BS, Everyone has their own comfort level with medical treatment but in my mind the IBD patient’s primary concern should be choosing a treatment that will be effective and a secondary concern should be side effects. I would never not try a potentially effective treatment due to a fear of a side effect. The only thing you have to fear is fear itself, to quote Franklin Roosevelt, and fear shouldn’t drive treatment. Maybe Remicade will cause side effects and maybe not, if it does you deal with... [ more ]
BS Thank you guys for both responding. My doctor isn't picking Entyvio over other ones for me, but rather recommending it first because it's a "biologic that should have less risk of side effect" after I stressed my hesitation for biologics in general. He said it targets the body in a different way which leads to less severe side effects, but I don't know how proven it is right now. I was recommended Remicade before my surgeries, but I was hesitant to start because it was somewhat new at the... [ more ]
CTBarrister It may be that Doctors are favoring Entyvio over Remicade due to less side effects and/or more targeted mechanism of action, although I would like to hear if that is in fact the reasoning of BS's doctor. My doctor did mention to me that Entyvio has a different mechanism of action than Remicade. I am looking at Entyvio as my "relief pitcher" in the bullpen should I ever develop antibodies against Remicade. [ more ]
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J-Pouch ForumsGeneral Discussion
Takedown
N Nick10136
Dog Yes it does get better! My UC was pretty fast and crazy too. For me, first flare to total colectomy was roughly 6 weeks. Anyway, hang in there Nick and keep us posted! You'll be buying white sheets in no time! [ more ]
CTB23 Yes, Nick, it does get better. I sometimes get a little leakage, but not often. Kegels do help as well and like Scott, I also take Lomotil at bedtime. Check with your surgeon before starting anything that will slow things down, for sure. It was a little while before I did. When I did start, I used Pepto, Immodium, and Lomotil. Now, I find I don’t need Pepto at all. But I added Benefiber and a probiotic-Align once my surgeon okayed it. It is quite an adjustment but before you know it, you’ll... [ more ]
Scott F Hi, Nick. You’re still very much in the adjustment period. I do take 1 Lomotil tablet at bedtime, which I find improves my uninterrupted sleep. I’m not sure I’d start this until you seem to be free of any sign of ileus, though. It really does get better in any case, though. [ more ]
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J-Pouch ForumsGeneral Discussion
Overeating?
P Pouchbro
Winterberry When you don't feel like eating meals, try organic Greek yogurt (lots of protein) with sliced ripe bananas for the sweetness that you crave. A ripe banana will taste very sweet. You could also add a drop of pure vanilla, cinnamon, or nutmeg to add sweet flavour to the yogurt. Same for oatmeal. Sweet potatoes have more flavour than white potato, are more nutritious, and can help thicken output. Poke holes in a medium sweet potato, pop into the microwave for 5 minutes or longer, and enjoy a... [ more ]
PouchLogic I honestly feel the best when I don't eat. I cannot afford to fast though. Even missing one meal means weight loss, let alone not eating for a whole day. I have trouble keeping weight on if I'm not get 3000cals or more a day. I definitely get sugar craving as well but it's definitely a gas creator. Good luck controlling your appetite. [ more ]
Raj I crave for sugar alot, and man have I paid alot too for it. Everytime I drink or eat anything too sugary my pouch goes nuts. I have cut all the unnecessary sugars from my diet so now whenever I crave for sugar I can eat a bite or two of choclate without having to worry. I drink alot of lemon juice without any issues and I use organic honey to sweeten anything but very less. Also fasting helps me heaps to keep my pouch stable. I usually have 5 meals from 8 in the morning to 8 in night... [ more ]
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J-Pouch ForumsHelp! Need advice now!
VSL or Visbiome for Dr. Appt Tomorrow?
T tulsamom
Scott F The price of VSL fluctuates a bit, at least at CVS, but most recently it’s gone up. [ more ]
CTBarrister One would think the jury verdict would have served to knock down the retail cost of VSL#3. True? [ more ]
Don M I've been living with a S-pouch for 34 years just a handful of pouch flare ups during that time, still everyday there are reminders how adnormal it is to live with this type of procedure. I my case it's been a testament of patience and resolve . I found VSL to be a great addition to help with any kind of imbalance in the gut. Its great to see.the growth in awareness for gut health.. [ more ]
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J-Pouch ForumsK-Pouch Korner
From J-Pouch to K-Pouch
KS Kirsten Schwartz
Kirsten Schwartz Jan, thanks for the input. I'm now decided to give my pouch another year; if I can't stand it, I'll go back to an ileostomy, which I'm also researching. I really appreciate your post. Kirsten [ more ]
JanW2 Hi Kristen, Jennifer have you a really good idea of what life can be with a Kpouch! Of course all are different. I got my K after 2 Jpouchs.I was left with a severe motility issue and went from an altered diet to just a handful of items I can digest and/or pass through that 30 Fr tube. Jen is so correct about telling you that is the only way to pass gas also. All of a sudden your belly is huge and you are frantically looking for the John.It has now become problematic to get supplies in a... [ more ]
Bodoni I hope things are ok with you. I am a long-time k-poucher and now have trapped gas pains. I have taken a few gas-x tabs. Nothing seems to work. I always worry about a blockage. Any ideas? [ more ]
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J-Pouch ForumsGeneral Discussion
stricture
P pammieskrh
pammieskrh since i posted in 2016, I had a severe pouchitis? Also had uerine cancer. Had hysterectomy and chemo. Also had loop ileostomy to give my pouch a rest. I am scheduled in May to have my pouch removed and another one made. Has anyone had a pouch removed and a new one formed? [ more ]
Blake I also have a top of the pouch stricture. To make matters worse, as reported several weeks ago on this site, I have a pillcam that's been floating around my small intestine since 2010, unable to pass by the stricture. Both are scheduled to be removed surgically. [ more ]
Savannah I have a stricture at the top of the pouch where it is attached to the small intestine. It is troublesome. I have had several bowel obstructions due to the narrowing. I had it stented at Mayo about 2 years ago but I still can't say if it helped very much. The stent migrated after 6 months and I had to have another procedure under anesthesia to remove it. I had another blockage 6 weeks ago and there was talk that I get reimaged to see if I should be restented. I have decided to hold off for... [ more ]
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J-Pouch ForumsGeneral Discussion
Could lose my pouch
A Aimc
TE Marie Good news! I had strictures that didn't respond to dilations done during scopes or under anesthesia. I had other problems so am not trying to scare you. I've read about some that dilate themselves. Don't ask me how [ more ]
Aimc Hi Te Marie, thanks for your response. My scope was Thursday morning. Apparently I have a stricture in my j pouch that closed to a pin sized opening. I was literally full of IT! Everytime I would call my GIs office, they would give me a script for flagyl. Anyway, after a week of Ng tube and countless enemas, they avoided surgery. I guess I will have to have the stricture stretched periodically. That will be done at the surgeons office. My was I scared. I wouldn't know what the results of the... [ more ]
TE Marie Hi Aimee, I wish I'd seen this last week when you posted. What did they find out when then scoped you Friday? I hope they figured out the problem and can get your j-pouch to work. I lost my j-pouch after 5 years and have an ileostomy. There are others on here that have similar stories and there some good threads about this that you might want to read. If you have any questions please ask and I will try to answer them. P Marie [ more ]
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J-Pouch ForumsGeneral Discussion
VSL#3 in the UK
FijiFiji
eddysmummy Hi Figi. I'm in the UK and had to really fight 5o get VSL#3 on script. I contacted Crohn's & Colitis UK who advised me to get my specialist nurse to write to my gp practice. They gave me links to specific articles for her to quote. Then....hey presto, I got a repeat script. Having said that, as I understand it, due to some legal wrangle, it is now called VIVOMIXX in the UK but my script altered to this without me doing anything. I'm not claiming benefits so I pay for my scripts with a... [ more ]
Fiji Thanks for the info everyone. I've never had any problems since taking VSL, so I'll probably stick with that, it's just a bit of a financial hit having to find an extra £50 a month. [ more ]
Bobish I take symprove (which you order online from the UK). Might be worth checking that out... There was research done (I've posted it a few times on here previously) about probiotics not reaching the gut, VSL and symprove were the 2 that did.. As above visbiome is the original VSL or the med VSL was based on... If that's available perhaps go for that! Will probably need to fund it yourself though (as I do with symprove). Docs are cutting back on meds avail on the NHS, with over the counter stuff... [ more ]
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J-Pouch ForumsHelp! Need advice now!
GAS!
P Pouchbro
CTBarrister Pepto Bismol is an ages old, go to remedy for gas. All the remedies you listed are total lightweight treatments compared to PB. PB is also well known as a treatment for pouchitis, used by many J Pouchers when antibotics treatment lose effectiveness or need to be changed. PB is a powerful antibactericidal. The operative ingredient is bismuth salicylate. It is toxic to gastrointestinal bacteria that (a) causes gas, and (b) causes irritation in the small bowel. It can also be toxic to your... [ more ]
Pouchbro I have not! I will try some pep, is it known to help with gas for us pouchers? [ more ]
CTBarrister Have you tried Pepto Bismol? That’s what I use before anything you have mentioned. [ more ]
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J-Pouch ForumsGeneral Discussion
Alcohol
D Dyna
BarbieG Try to take 2 Peptos before you drink and that should help. I still drink beer but get gas.. Tequila and sugary liquor gives heartburn, Patron I will suffer through just try to eat and have a full belly when you start. [ more ]
twinkie Miller Lite nvr bothers me. I've been able to drink all alcohol, wine, hard mixed liquors; but, limit it to 1 or 2 drinks. NVR excessively. Not worth it. [ more ]
brunofrombelgium No problems with our great belgian beers, no more than 3 pcs and combined with crisps is my pouch is happy 😃 [ more ]
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J-Pouch ForumsHelp! Need advice now!
Small bowel blockage/J Poucher
T Tedesco2011
Tedesco2011 Thanks all for the responses. Spoke to my surgeon today on the phone. He's not so sure it's an obstruction. (no throwing up and able to pass). I feel better but not out of the woods. Having waves of sharp pain, but around 6/10 pain scale. If in morning it hasn't subsided, I'll have to go in to see him. thx! [ more ]
Jaypea I agree. Heating pad, masssage, liquids especially coffee, hands and knees position, walking lots. I get small bowel obstructions all the time. Sometimes I end up in the Er if I have been vomiting or it is going on for 36 hours or the pain is unbearable. If you are worried please contact your physician or surgeon. [ more ]
tulsamom I'd try heating pad, liquid diet, preferable grape or prune juice and a little light bouncing to move things along. The ER is more for when nothing can pass and you are throwing up, as in a full blockage. Since this was posted yesterday, I hope you are felling much better today! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Doctors in the UK
Pilot DebbyPilot Debby
Wee sylv Edit - I also meant to say that as Bobish also stated we are not furnished with in depth information on our medical issues. For example if you have been seen in A&E. and are seen and discharged I don’t think you get any paperwork stating what treatment was given. Even if you have been an inpatient for weeks, on discharge you will be given 1 A4 sheet of paper with a few fields completed stating your personal information, date of admission and discharge, who your consultant was, very... [ more ]
Wee sylv Hi, I’d just like to add to what Bobish has already advised. we are extremely fortunate in the UK that all our healthcare is free at point of treatment (everyone who is employed pays a National Insurance contribution which goes towards paying for NHS services), this is a very small percentage of your gross salary) however even if you do not work everyone who lives in the UK is entitled to “free” healthcare. However - there are other huge differences. Mad Bobish states, we usually do not get... [ more ]
Pilot Debby I have heard about St Marks here in the USA...now I see two people on this site who have referred to it now so that is good. I have yet to see my doctor at the Cleveland Clinic to ask him for a doctor also but now I have some reference to a hospital to tell him about. I will pay the extra for the private medical service but will get that figured out once I get there. Many people know what a j pouch is here but ran into a lot that do not. Many pretend to know until I know they do not... [ more ]
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J-Pouch ForumsGeneral Discussion
Lifting after Jpouch
BorislavBorislav
tf I had takedown in 2013. After recovery at least a few months, I did not do any major physical chores, work or exercise. I introduced my activities back. About 5 months later I noticed a bump in my stomach it was a Hernia. I was then starting the process of moving and could have out did myself in lifting. Now 5 yrs later it is larger and I need surgery. My dr said after this surgery I can do anything I want after the recovery time. We will see. I guess it depends on the individual. [ more ]
Dog 47 and I lift roughly 5 days a week. Abs, squats, etc, no problem. I have to be strict about form. My abs don't "flex" the same way at my old ostomy site and I have to be careful to not let that site bulge out. [ more ]
Raj I've been lifting 1 month post takedown. My surgeon suggested weightlifting after 10 days post surgery but I started only a month after to let the stoma site heal. I lift very heavy for my weight. I am at 125lbs at the moment and I can do 140+lb deadlift or a 120+lb squat. I've been benching at 110lbs now. There was only once I felt a little pain in my stoma site when I lifted heavy on deadlift without my workout belt and went for dumbell rowing. I am 7 months out from takedown and I was... [ more ]
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J-Pouch ForumsMen's Health
Anyone had a prostate biopsy through the jpouch?
MN Mark N
MJL My husbands PSA levels are all over, 4 to 9. He has found that when his pouch is acting up and he has his PSA drawn, it is high. My husband after talking to his doc's and doing a lot of research, opted for a MRI rather than the traditional biopsy. Reasons why, risks of damage to pouch, less invasive, and lower risk of infection. He takes Cipro ans sometimes Flagyl as needed, which is a few times a week. [ more ]
danny Dud I also had a high PSA of 6.2. My Dr. went the route of Cipro (1000 mg daily) for Five Days, retest in 6 weeks. dropped to 5.4, so I had a 3 filtered lower body MRI with external magnet, followed by five more days of Cipro. Mri score was a 2 0n a scale of 1-5. Six weeks later had the 4k PSA blood test, score was a 7 on a scale 0-100. This test uses many more markers than the standard test. and yes my PSA dropped to 3.0, normal for me at age 71. Hope this helps. And yes my gastro said a... [ more ]
No Monty-- I had a J pouch procedure completed about 9 years ago successfully with no problems of pouchitis, etc. since. I'm now facing an elevated PSA--from around 3 in 2016 to 5 in 2017 jumping to 9.1 currently. I have not yet consulted with the surgeon who did the procedure but my gastroenterologist seems to agree that diagnosis by MRI is the way to proceed versus any needle procedures. At the end of your last post you refer to "New Urine Tests"--can you expound upon this? [ more ]
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J-Pouch ForumsGeneral Discussion
Daily stomach aches?
NativeNative
Native Suebear im not real sure ha. It doesnt feel like a classic stomach upset. Not affected that I can tell by food or anything... its weird i guess. Feels like when I had UC to be honest just not the bloody stool or urgency really. Raj i had bloodwork a couple months ago. Iv NEVER had iron abnormalities even when I was bleeding (excapt prior to surgery with severe UC) ha. Im an anomaly. Man Idk. Us people with pouches because of UC I think theres deeper autoimmune stuff going on thats not fully... [ more ]
Raj Have you done your bloodwork recently ?Maybe its the deficiency of iron or dehyration causing these symptoms. I was told by my surgeon iron deficiency is pretty common and can go unnoticed but can cause many issue like cramping. [ more ]
suebear Is it actual stomach ache or an ache in the intestines? Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Cipro ear ringing
A asdfqwer
Scott F A variety of clarity-of-thinking issues have been reported with Cipro. Everyone’s threshold (for what side effects are acceptable) is a personal choice. There’s always an option of looking for an alternative medication that might be better tolerated. [ more ]
asdfqwer DOG, I believe I am experiencing brain fog from cipro, and there were a few recent instances where I had to think twice about something basic. It is somewhat subtle but the whole colitis ordeal has made me hyper vigilant about my long term health and prospects. I know that as I'm told antibiotics are better than the damage done by mild pouchitis so I guess I will continue taking. [ more ]
Scott F Jaypea, Epocrates doesn’t list ototoxicity as an adverse effect of Flagyl. Can you point me to a good reference that describes this reaction? [ more ]
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J-Pouch ForumsGeneral Discussion
Endscopic disease (severe pouchitis) BUT good quality of life
I Ikh
Native I wonder about this too. I had my takedown about 7 months ago and Have had symptoms on occasion where, and this is just the best way I can describe it, I feel like I have a sock shoved up my butt haha. not severe pain, just sort of... inflamed feeling. I still have about 5 bathroom trips a day. occasionally will bump up to 7 and I have daily nagging stomach aches in the evening. I wake in the morning and feel fine but once it starts I notice i dont pass as much gas and that makes me feel a... [ more ]
AllyKat Don’t worry, bio drugs will take care of it. I’m on Entyvio 3 years strong! After almost losing my pouch. Good luck. [ more ]
Ikh To add to the story... "Asymptomatic inflammatory bowel disease with special reference to ulcerative colitis in apparently healthy persons." https://www.ncbi.nlm.nih.gov/pubmed/11280543 That's leading me to think that endoscopic examination is just one chapter of the story... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch diet Fiber or no?
NickPNickP
Winterberry After takedown I ate food with soluble fiber, no insoluble fiber foods. No raw vegetables, no fruit peel, no nuts or seeds, not even multigrain bread! Just remember that insoluble food can hurt on the way out because it doesn't break down completely; soluble food becomes gel-like and soft in the gut. Cooked zucchini helped me, also cooked spinach. Sweet potato was introduced in time. Well cooked oatmeal with sliced banana on top. Pasta with pesto sauce or good olive oil, but not acidic... [ more ]
Scott F I’ve been on soluble fiber (psyllium) twice daily since my surgery 17 years ago. You probably should go easy on insoluble fiber in the beginning, and over time explore your body’s tolerances for salads, fruits, etc. [ more ]
Raj Many folks are given fiber supplements 1-2 months post takedown to help the stool bulk up. I was given immediately after takedown. 4tsp at night to help me sleep better. The pysllium husk powder has helped me big time. Even now I take 1.5 tsp in morning and sometimes 1tsp before dinner, its the best thing and I also started taking 1 imodium caps. (2mg) in the morning thats the only thing I have to take. I wouldnt say shy away from fiber altogether, just dont have fresh salad, fruits, high... [ more ]
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J-Pouch ForumsGeneral Discussion
Chat Room
JK Johnny K
nocolon-2000 I miss those chat room days! It was so great to talk to people and be silly. I will always be grateful for the friends I made and the memories we created. [ more ]
fisherdan I am 64 and suffered with U.C., had my colon removed after 10+ years with U.C., had Jpouch surgery and suffered with pouchus ever since! Tried Entyvio 4 years and now on Stellera every 4 weeks! Still not doing well with pouchitis! I have had water stool for over 25 years! Only time they were formed was high dosage of Prednisone! Stopped long term pain use by going to powdered Kratom and thinking it is causing liver enzymes to be off and pouchitis worse! I am thinking of asking back on... [ more ]
Jan Dollar No, there has not been moderated chat for years, and unless you prearrange a time to meet with someone, it will be empty. In these days of instant messaging and social networking, chat rooms just don't get much use. Bill J has considered dropping the chat feature, since it does not get much use, if any. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Unstoppable leakage!
EricEric
Former Member Eric ; It is good to know and especially hearing from you about how much the staff at Mount Sinai Health mean to you. In the States it can be the same and also, it can be completely different with the health system being primarily private insurer driven. When you got time in the future let us hear from you . [ more ]
rebel Hi Eric Your on a totally different level of 'awesomeness'; showing incredible perseverance and determination; keep being positive, things will get better. Could this be the reason that your losing fluids; there isn't enough small bowel to absorb the water? 'removed my entire colon and most of my small bowel, leaving me with only approximately 5-10% of my entire GI tract' Also not great, but nutritional drinks might be the way forward; I'm talking about a few months. That might help to build... [ more ]
Former Member Eric this is so sad to hear. You should know that there are so many person/ people that have these types of surgeries and the specific IBD disease with the underlying auto immune disorder that suffer. There are several medical studies on methods, post op complication , quality of life ,morbidity , and completed suicide rates. It is very sad that so many patients ; persons have suffered on their own . Isolated by medical protocols` narrative that frowns on disclosing information that can help... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
J pouch ulcer
R rberls
AllyKat I’m on Entyvio for 3 years and I still have my 19 year old pouch, pouchitis since day 1! No you won’t lose it. Lots of things out their now. [ more ]
rberls Thanks for the reassurance. [ more ]
Scott F As CT wrote, the biopsies are unlikely to be informative. It’s worth trying to get the inflammation under control, but the fact that you feel good is much more important. Like you I’ve been on Cipro and Flagyl for a long time; I recognize that this combination may fail at some point (later better than sooner), and I’d have to find another treatment (such as a biologic). That’s true regardless of the underlying diagnosis. Ulcers in the pouch aren’t generally evidence of Crohn’s, anyway. I... [ more ]
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J-Pouch ForumsGeneral Discussion
Antibiotic article (Cipro)
mgmt10mgmt10
asdfqwer Interrsting, what accounts for higher risk with younger people? More metabolic activity?, more cardiovascular activity, more muscle mass? [ more ]
CTBarrister See this: https://www.everydayhealth.com...lihood-heart-attack/ [ more ]
CTBarrister A couple things should be kept in mind here. First is that having IBD in and of itself doubles the risk of heart attacks and cardiovascular disease, and likely also increases the risk of aortic dissection by so much more than taking Cipro as to make that 1.5% increase from Cipro pale to near meaninglessness. Around 12 years ago I represented a client who had an aortic dissection and died. The main reason he died is because he was discharged from the hospital without a chest x ray having been... [ more ]
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J-Pouch ForumsGeneral Discussion
Anxiety related to bathroom issues
AI Accept It
Accept It Hi Raj, Thanks for the response. I guess we manage as best we can under the circumstances. Hope you are feeling good today! [ more ]
Raj Yeah UC remissions makes you overthink easily over any type of food or situation you are getting in. I also got from being a highly social and active guy to a pretty unsocial and not so active guy. Though I could never really find a permanent solution. The one good way I found out was to drink a big banana/mango smoothie 1 hr prior to going out with friends or at any event. The one magic thing that kept me full for hours and I didnt have to worry about gas/toilet. Also if I had to eat at a... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Pouch - Arthritis connection?
drone3drone3
Scott F I think this is probably nonsense. If someone’s pouch were chronically inflamed then there might possibly be some consequences elsewhere in the body, I suppose. It will be interesting if anyone here reports the magical experience you described. [ more ]
See 1 reply...
J-Pouch ForumsPouchitis
Short Term Antibiotics
HE herb ear
Raj I've had a very minor bout of pouchitis once post takedown. Tbh like you I too am scared of taking any antibiotics whatsoever. I know many people have been taking them for really long times without any/minor side effects. Its just that with UC I compromised so much with medicines that I dont feel they fix up the issue. For me I had a cough along with pouchitis in the winters and I took 3 days course of 200mg metronizadole BD along with cough syrups. It did give my pouch a bit of relief but... [ more ]
CTBarrister Cramps, loose stools, increased urgency, nighttime incontinence, and incomplete evacuation are all signs of Pouchitis. If you are expecting to feel like you did when you had UC, no. [ more ]
herb ear I haven’t been feeling well for about a week but don’t have clear signs of pouchitis....just cramps and loose stools...how do you know when you have pouchitis? [ more ]
See all 6 replies...
J-Pouch ForumsPouchitis
Budenofalk steroid
D Deedeeh
Deedeeh Hi everyone thanks so much for taking the time to reply. Scott it is Chronic inflammation that I am treating. I have tried both flagyl and cipro previously. currently taking cipro with the budenofalk. CT Barristar Thanks for that info I will ask the dr why he is favouring entivyo over remicade. i just want the one thats the most effective with the least side effects. Still Standing I agree that the side effects are not worth it for me. I would rather the constant bathroom trips than the... [ more ]
Still Standing I'm on both Budesonide and Entyvio along with Imuran. The combination of medicines has helped my pouch behave better than before I started with it. (I actually feel like I have a life outside the bathroom now.) Granted I've been on Budesonide for 2 1/2 years and the Imuran and Entyvio just a few months. I was on Humira before that which didn't work at all for me and then Remicade which caused horrible side-effects for me. Will know if the inflammation is actually gone when I get my next... [ more ]
CTBarrister For chronic Pouch inflammation antibiotics would be the first line of treatment and biological drugs like Remicade or Entyvio would be the second line of treatment. Budesonide/Entocort was in my case only used as a supplemental treatment when the antibiotics started to not work as well. It did help me somewhat, but inevitably I ended up on biological drugs. Remicade is generally favored over Entyvio as a first option biological due to empirical evidence of effectiveness (clinical trials) on... [ more ]
See all 4 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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