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J-Pouch ForumsHelp! Need advice now!
Pouchitis/Cuffitis and Cipro Damages- Need Advice and Support
N NuAnoos
NuAnoos Well, Xifaxin and Flagyl only reduce my pouchitis but neither cure it. It sits there, waiting for me to go off the Antibiotics and then boom, I get nailed again. My achilles are still a mess from the dose of 3 days of cipro I took back in June. I have pain, cannot run, do a lot of soaking in the bath in the evenings. They are tender even sitting at my job if I don't wear my ankle supports. I think maybe I've ruined them, but keep hope that they start feeling better and I could maybe... [ more ]
NuAnoos Finished a cycle of Xifaxin last night. It gave me the worst gas probs but overall I think I feel better. I'm avoiding all alcohol as it seems to trigger pouchitis. Avoiding lactose. Taking Manuka honey, not sure if it works but it tastes good!, and avoiding high sugar foods. I tried FODMAP but no way I can do that. I already am trying to cut out certain carbs but the FODMAP is about 10 times more extreme than I can hang with. I hope things continue to stabilize or I'll do another round of... [ more ]
Leila airhart I am glad to hear you are feeling a little better. You have to be a strong person to be open about our issues we have and thank you for sharing. Most people have never heard of c diff. Anytime I have water bms that linger, I call the Dr and drop off a sample off at the lab at the hospital to see what's going on. I have chronic pouchittis and the Cipro and flagyl mess with the tendons in my hands hurt and if course a lot more side effects but they fix us. Stay strong! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouch Function
J Jddarr66
Jddarr66 I will say this. Up until recently I would have a movement an hour after I ate. You could almost set a watch to it. If I ate four small meals, I'd have four movements. I never was incontinant at night. Now I'm doing good to have two good movements and I have leakage during the day. I'm having to wear underwear guards during the day and depends at night. Maybe it's a kink or a slight blockage. I hope not because it sounds like surgery is the only way to correct a kink and my last surgery... [ more ]
Scott F Fair enough. Maybe back up the troubleshooting one step, though? If you feel an urge to go (or a sensation that simulates it), but nothing comes out, a key question is whether the pouch is full or empty (or somewhere in between). A temporary or partial blockage upstream can create plenty of cramping without a full pouch, and have nothing to do with a pouch problem. There are plenty of possible pouch problems, too, of course. If you want to get fancy/aggressive you could try irrigating your... [ more ]
Jddarr66 Because of the problems I've been having. I'm just trying to troubleshoot things. Also I'll have movement contractions and feel like I need to go but the contractions will subside and nothing happens. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Exploratory Lap for Ascites and ER Visit/Hospital Stay
CalifornicationCalifornication
Scott F If this is Dr. Phillip Fleshner then I believe that he's a colo-rectal surgeon rather than a gastroenterologist. It's possible that a gastroenterologist might be trying to figure this out non-surgically. That doesn't necessarily mean that it would be figured out that way, though. In any case, it's quite important for the cause of the ascites to get figured out. Dr. Fleshner is really proposing two procedures in one: the exploratory laparotomy is intended, I'm guessing, to try to find out why... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch prolapse
A Angela30
Angela30 Im sorry. Yes I meant if this is something that could be put off longer because its not that big of a deal. I am looking into flying. I would rather fly but it is a little more expensive. [ more ]
Scott F Angela, I think it might depend on what you'd like to wait for. If you're asking about waiting for better driving weather that might make sense, though your near-emergency suggests that time isn't really on your side. A prolapse won't improve on its own, and you've described a situation that really does need to get fixed. Is there any chance you could fly instead of drive? 900 miles is a heck of a drive. [ more ]
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J-Pouch ForumsHelp! Need advice now!
rectum spasms
M marshall
Wee sylv I'm sorry to hear that, it might be nerve damage due to the biopsy. Since I had my colectomy 16 years ago I have suffered from anal spasms, ranging in pain from a feeling of heaviness and discomfort to agonising pain which literally stops me in my tracks. I'm in the UK and this past 6 months the "attacks" have increased in frequency. I requested an urgent outpatient appointment to see my surgeon. I finally got to see him 9 weeks later. He was not my usual "guy" so I was describing my... [ more ]
CTBarrister Call the medical provider(s) who ordered and/or performed the biopsy and report the symptoms. [ more ]
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J-Pouch ForumsHelp! Need advice now!
K pouch and Gastroparesis
A angilanr
angilanr Thanks Sharon. I do drink a mild laxative tea and irrigate. Really just tryin to make sure I'm not alone. Happy Ostomy Day Ang [ more ]
skn69 Anglilanr, As Jan said, a BCIR and a K pouch are essentially the same pouch, it is just the valve that is different... As for output, depending on what I eat, I usually intubate 8 to 12xs/day...my pouch hates gas and will not let me sleep until it 'burps' or evacuates its gas so I need to stay up late enough to empty...and I can empty up to nearly a liter. What do you use to thin out your output? Are you drinking prune or grape juice (or both)...Do you drink green tea (they say it helps,... [ more ]
Jan Dollar What has led you to believe that a BCIR would function better than a K-pouch? It may be that an end ileostomy is your better option. But the BCIR doc should be able to let you know one wayor another. This sure sounds intolerable. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch surgery
E Eagler123
Sharon W It sounds a lot like me from last surgery until 11 months, I was always up and made at least 15 trips a day to the bathroom. I am still on the Metamucil 2 times a day and Imodium, with only 2 trips at night, sometimes only to pee. I could probably stop some of the Metamucil or Imodium but I am afraid to go backwards. So from my experience it takes a lot more time, but I would definitely ask again in 2 weeks if the nausea,weight loss, appetite is not resolved though. [ more ]
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J-Pouch ForumsHelp! Need advice now!
mucus incontinence after first surgery
M min990
FelixGust Thanks so much min990, that was really interesting and helpful. [ more ]
min990 Hey Felix, Yes it it is possible to train your sphincters as they are muscles like any other muscle in your body. There are actually two sphincters, one is under autonomic control (meaning you can’t control it) and the other is under voluntary control (you can control it!) Here is the link: http://www.wakeman.co.nz/site/...%20for%20leakage.pdf [ more ]
FelixGust Re: mucus incontinence after first surgery [ more ]
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J-Pouch ForumsHelp! Need advice now!
Must be in a flare
A AARON
AARON Thank you Scott! [ more ]
Scott F This is most likely food poisoning/gastroenteritis, just like folks with colons get. For it to be a "flare" there would have to be something like cuffitis or pouchitis "flaring" (worsening). We are at greater risk for dehydration, of course, and that's your greatest risk now. If you're no longer peeing a few times a day, or if it's dark, you need to take some action. If water alone isn't doing the job, oral rehydration solution (or Pedialyte) might do much better. If it's at the point of... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Chronic pouchitis, losing hope
E Ellie186
JJA Here is a link to the article: https://www.researchgate.net/p...ngement_of_Pouchitis [ more ]
laludy Don’t give up please there are other ways. I was pouchitist and I used antibiotics and used Imuran. I used Imuran for 6 years and I was perfect. For 1 year I am not using it and I got pouchitist 3 times in one year. Now I have to use it again. Your situation can be like this. Antibiotics are not always enough. Don’t loose your hope [ more ]
JJA Don't panic-you have many options! this is a great article with a decision chart for treatments, and it was written before biologics-there are at least 3 (maybe more) biologics like remicade, humira, Entivyo that can be tried once the suggestions in the article/chart have been exhausted. I had good response from cortsteroid suppositories and budesonide, but could never seen off them. Rotating antibiotics (flagyl and Cipro didn't work, but I do 2 weeks on Levoquin and tthen 2 on xifaxin)... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Just had lots of trouble after eating a salad.
A AARON
JJA 2 decades in and raw, fresh veggies/salad cause me issues-not exactly like you indicated, but they go through me fast and lead to very watery stools (with lots of undigested bits). Too bad because so love them. I still eat them but have learned to pair them with a carb and maybe also a protein as with a balanced meal (rather than exclusively raw veggies) I don't have trouble (lthoigh still see the I digested bits later!). [ more ]
skn69 Its a hit and miss sort of thing with me...Sometimes it goes through easily and sometimes it blocks up everything...I have found no rhyme or reason for the whats and whys...This weekend I made myself a pound of caramel walnut fudge and at it all (rolled in walnuts) and had no problems, other times 2 walnuts and I am cooked. Chew a lot, stick to soft food for a while after any irritation or semi-blockage... Be kind to yourself and don't overdo it for a while (chicken soup is my go-to friend... [ more ]
Annikki Start slowly with small amounts. It takes time for our bodies to adjust and what you can't eat now but be no issues in the future. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need a GI !!
KennyJG44KennyJG44
KennyJG44 Thanks both of you....I guess since I've only ever seen my NYC surgeon (Bauer), I've become pretty protective over my pouch and new setup and have concerns (legitimate or not) about 'outsiders' getting involved. But I take both of your points - I will see a locally referred GI this afternoon and see what he has to say. Of course, my symptoms are mild this morning (isn't that always the case). Unless he has extensive J-pouch exp, I think if he wishes to scope the bottom, I might revisit the... [ more ]
Jeffsmom As Scott started not everyone in NYC is competent. My son sees a surgeon in NY who is awesome. But he also takes our insurance. Unless your surgeon is paying your bills, I'd see someone who takes my insurance. No since you work at the hospital, you will most likely get good care. Seeing someone who doesn't take insurance is a very risky thing. My son's bills over the last 3 years are over one million dollars, closer to two after this year. And it was all covered by our insurance. If you... [ more ]
Scott F In many parts of the country it's impossible to find a GI who is familiar with J-pouches. Just because you're near New York City doesn't mean that the folks who chose to practice in the city will be better for you. Why not see your local, knowledgeable GI and see what you think of him? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Help - Advice on Possible Surgery
temotytemoty
temoty I'm surprised nobody here seems to have had a bowel resection done? Is it a rare procedure for us j-pouchers? It's been really hard to find anyone to talk to about this. [ more ]
temoty Yes, I'll try that suggestion for sure. Thanks [ more ]
Winterberry Hello, Temoty. Tell your surgeon you are very anxious about the surgery and ask if you can talk with patients who have been through this particular procedure. If your surgeon is suggesting it, he / she likely has performed this surgery. Some surgeon's have a list of patients who are willing to be peer patients, or peer support, to any patient (of that doctor's) considering the surgery. I talked with three peer patients before my big surgery. I was very anxious what my new life would be and I... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Gas
T Tiara
skn69 Have you considered gallbladder? It could be that or gastritis... Do you still have your gallbladder? Sharon [ more ]
Former Member Tiara, Do you have allergies? Or maybe a case of the flu? This always occurs to me whenever my allergies have a flare or if I get a common cold. Under all the circumstances of the pouch & me having seasonal allergies, this always does this to me - sick - gas - vomiting. [ more ]
Tiara This has been happening for about 2 weeks and I'm still pooping , not sure why this is occurring I'm thinking maybe gas or food that I have eaten [ more ]
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J-Pouch ForumsHelp! Need advice now!
military acceptance
T tentacle245
Jan Dollar With an all volunteer military, they can be as picky as they want to be. I believe that most of the issue is not wanting to sign on to potential troubles down the road, because any illness you develop after you are in, the military owns. On the other hand, there are numerous careers in the civilian sector that contract with the DOD without the onerous health restrictions. I had a long career with the VA long after my UC diagnosis. Jan [ more ]
CTB23 I guess I was lucky. I was able to do my 20 years, 4 active and 16 reserve, before I was diagnosed with UC at 60. I did have issues for quite a while before that but I guess it was mild enough that it didn't interfere enough with my job. Of course I also was not in the infantry, so that probably made life easier, and I pretty much always had access to a bathroom. When I was finally diagnosed it was moderate to severe pancolitis. I guess if things had been bad enough at the time, I would... [ more ]
Maguire37 @CTBarrister , thank you for your kind response. I believe when you have the calling and desire in your heart, then you exhaust all avenues to reach your goal. I, along with countless others who feel we are more fit(because we have to be) than others without a history of health issues, hope that that desire never subsides. I know that there has to be at least one other soul in the greatest military in the world that represents the greatest men and women of the greatest country to ever exist... [ more ]
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J-Pouch ForumsHelp! Need advice now!
sauerkraut
MIKEEYMIKEEY
MIKEEY Thanks for all this wonderful information. Take good care and God bless. [ more ]
CTBarrister Just wanted to post that I tried a really good new organic Sauerkraut tonight, made from local Northeast-grown cabbages, called Real Pickles. It is a company apparently based in Greenfield, Mass. I found it in the refrigerated foods section of my local health store here in Connecticut. It was very expensive, and very tasty. One of the better American krauts I have tasted. [ more ]
MIKEEY Thank you again for your help and concern. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Running out everywhere
L LoveLife
Former Member I'm pleased, you've sought assistance from the Hospital. When you say " you can't even keep water in " were you vomiting ? I feel you may have dehydrated; now you're in Hospital, you probably already know that. Whilst I was awaiting my takedown surgery, I was unable to absorb sufficient fluids despite how much I was drinking; this occurred often and each occasion resulting in an emergency admission into Hospital by Ambulance for IV fluids. It's true to monitor the colour of urine output and... [ more ]
LoveLife Thank you guys. In the ER now getting IV fluids. Had hoped to avoid it though [ more ]
Scott F It can be hard to decide when you're getting dehydrated enough to warrant an ER visit. If you're delaying, pay attention to your peeing - if it gets very dark or stops you have a serious issue. In the meantime, you can try sips of Pedialyte or other Oral Rehydration Solution. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Mayo Clinic Rochester
D DavesGirl
hbrannon Keep us posted on his progress. Been an S pouch patient from Rochester for 35 years. Have had some problems and am sure will be facing this at some time. He's got this. [ more ]
DavesGirl Thanks Jan. This was the second opinion. And at Mayo, we feel they know what they are doing. With everything that his pouch has (fistulas, strictures, abscess), everyone feels this is the best option. [ more ]
Jan Dollar Sorry about the unwelcome news. I suppose you could still get a second opinion regarding a continent ileostomy. But whatever you decide, just know that nearly everyone who has had to revert to an end ileostomy has adapted well and had a good quality of life. Actually, the satisfaction rates of end ileostomy and j-pouch are very similar. It is just hard to wrap your head around it at first. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Horrible pain - anal fissure
C canlafre
Wee sylv I hope your pain has settled. I just wanted to add to my original post, I was being treated for anal fissures though my GP couldn't see or feel any. I'd had a fissure in the past and this felt different. I requested an outpatient appointment to see my surgeon - I live in Scotland btw, an emergency referral led to an 8 week wait! However that's besides the point, I had a really good discussion with the surgeon who appeared to know exactly what I was describing- he has suggested that in actual... [ more ]
canlafre I keep having pain at the top of seton. And the fissure that keep "cleaning out keeps causing issues. Agh [ more ]
Unholy Poet Yes botox successfully rid me of my first fissure 15 years ago, but unfortunately failed with my most recent one. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Possible UC in 2 year old
heverhever
hever Hi Sharon, thanks for your help, her GP has recommended probiotics, so we'll see if it helps, the allergist doesn't really help, she did recommend his formula, and said its a complete food for him and wouldn't need anything else, and he is gaining weight, so thats good, it'd just be nice to give him a proper dinner and spoil him a bit afterall he's put up with and still has to go thru, I really feel sorry for my daughter when Blake's cousins are with him and they just eat anything and... [ more ]
lablover Aww, that poor guy. Sending cyber hugs to all of you.. [ more ]
skn69 Ok, I understand...most doctors do not believe in it...tell her that probiotics can help, are 'harmless' unless he is allergic to dairy or he can get his share from anything that has been in brine. I do not believe in Hocus-pocus either but sometimes traditional medicine can be helped with paramedical advice... Keep me posted Sharon [ more ]
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J-Pouch ForumsHelp! Need advice now!
Metamucil Multi Grain Fiber Wafers
T TCM
JJA The wafers worked great for me, but over the years I developed a taste aversion to them, and I also didn't need the extra calories. I use the capsules - they work fine for me. I know my habits, so (for example if I am drinking beer and eating popcorn I will have a rapid transport time), so just take them more often. Generally, I have found the capsules to work in regular circumstances-easy to test - if they haven't dissolved in transit, they will end up in the toilet bowl a short while... [ more ]
Scott F We found some of the Metamucil wafer flavors taste okay, but a couple of the flavors seemed yucky to us. We nicknamed them "nasty biscuits." We've stopped using them as a source of fiber, but now the powder and capsules are called "nasty powder" and "nasty capsules" in my house, even though they aren't nasty. [ more ]
TCM Mary, They taste fine, pretty good really. I have the cinnamon spice but you can also get them in apple crisp flavor. I will try them next. I like that they are so convenient, so long as you don't turn them into crumbs as Scott noted above. I also bought some packets of Benefiber which can be stirred into water, hot drinks, juice, soup etc. I will be traveling several times in the next month and take both types with me to see how they fare on the road. My middle name might as well be... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Takedown was Monday, now what?
C Coleeneedstogo
Winterberry Congratulations! You got through the tough surgeries. My very first food when I got home from reversal was a sunny-side up egg on toast. And a strong cup of tea. After that almost all my meals consisted of high protein foods such as chicken, fish, tofu, white pasta, white rice, lots of wilted spinach as my vegetable. Breakfast was toast with almond butter and soft boiled egg with lots of salt because we need higher salt intake until our body is used to living without a colon. Lunch was bone... [ more ]
Bobish For the first few weeks I followed the ostomy diet and took probiotics. It was a struggle to eat anything to be honest. As you get stronger you can start introducing me foods. Don't rush though. Sounds like your doing fine so far [ more ]
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J-Pouch ForumsHelp! Need advice now!
possible infection and what to do
L ljk
Scott F Leslie, is your pouchitis currently being treated? Most of us with chronic pouchitis have to stay on antibiotics (or sometimes biologic medication) to be well. Chronic pouchitis can be helped by probiotics (like VSL #3) and/or a very-low-carbohydrate diet. Usually antibiotics are needed, though. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis? Or something else...
MochiMochi
Scott F Yes, Cortifoam is by prescription, and could cause some steroid side effects. To be honest, if my only symptom were mild bleeding I'd probably choose regular monitoring over Cortifoam. I'd at least discuss the trade-offs with my doctor. What nailed you in the earlier case was contracting C. diff; without that the reassurance would likely have proven correct. [ more ]
Mochi Thanks so much for your reply. I'm hoping it's okay for a while. I think what freaks me out the most is when I had the UC I was told over and over it was a mild case and no problem, far from needing surgery, and then I got c diff and within a few weeks had my colon taken out. I'm feeling great again and the possibility of a new big problem is terrifying!! I have read some good things about cortifoam, is it something my GI would need to prescribe? [ more ]
Scott F If you're bleeding without other symptoms that could possibly be just fine for a long time, particularly if the bleeding is minor. It sounds like you may have had both cuffitis and pouchitis, and the Cipro handled the pouchitis. If you want to try other things that might help the bleeding, Short Chain Fatty Acid enemas are a possibility, as is Cortifoam or Cortenema. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Functional problem
S sudie
skn69 Susan, So sorry, this really sucks...really. I have been having partial and semi-obstructions on a regular basis with full blown occlusions/blockages that last up to 27hrs... I have not found a one-size-fits-all solution yet... I had a couple of hernias fixed with mesh and my surgeon took advantage of being in there to clip a few adhesions as well as release a loop of bowel that was adhesed to the abdominal wall... I thought that I was done but the spot where the bowel was adhesed is still... [ more ]
Jan Dollar It might be possible you are having pseudobstructions, which is functional, but you have actual signs of inflammation/infection. Let's hope the antibiotics get you back on track. Jan [ more ]
Scott F I'm not convinced that a functional pouch problem can cause obstructions severe enough to lead to uncontrolled vomiting. It's more likely that the adhesion surgery either failed to get the adhesions giving you the most trouble, or new ones developed in their place. I'm sorry you're going through this. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Rectovaginal fistula
SaffSaff
Scott F SAFF, Flagyl does come as a rectal suppository in some countries. I see that you're in Australia, so it might be available to you without my wacky idea. Your doctor is partially correct, that the Flagyl is absorbed into the blood in either case. However, we don't really know how antibiotics help in pouchitis, we just make some reasonable guesses. A higher gut concentration of antibiotic may be very important to success. [ more ]
Saff OK thanks Scott - yes I meant 'haven't' worked. I try them for at least two weeks yes. Probably haven't exhausted combinations though. I raised the flagyl concern with my doc. about not getting to my pouch but he said it works through the blood stream so should be effective still..but I agree youd think it would be more effective with full passage through the gut. Good to know about the flagyl gel - hadn't heard of that. will check it out. THanks, [ more ]
Scott F SAFF, I'm guessing you meant to write that the local treatments *haven't* helped. Hopefully you've given them enough time (at least a couple of weeks) and considered combinations of them. One wacky idea that you'd really need GI guidance for would be to use Flagyl gel, which is intended for vaginal use, applied rectally. I'm sure there's no research on this, so you (and your doctor) would be flying blind. Taking it orally isn't likely to get where it's needed. Good luck! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Sore around stoma
Melissa JeanMelissa Jean
Former Member Heavily smear ilex paste all around your Stoma, affix your Stoma appliance directly over the ilex and keep it on as long as possible until you need to change your appliance, ideally, try and manage at least 2 or maybe 3 days. When changing your appliance the ilex paste will peel away from around your Stoma in large chunks, peel it all off completely. If your skin is still severely damaged and painful, heavily reapply the ilex paste and stick your Stoma appliance over it again, following same... [ more ]
skn69 Not sure if this is possible for you or not considering the limitations of leaving the ileo without a bag but...(maybe you could try this while laying in the tub without water. 1. put a sun lamp on the stoma for a few minutes morning and night (you may wish to cover the sensitive tissues with a damp cotton pad while the lamp is on it. 2. Blow dry the skin...ditto, in the tub without water...the heat helps to kill the bacteria and heals the skin...put the dryer on medium heat so as not to... [ more ]
hever Hi there, Im having similar problems, illeostomy created in Feb after failed J pouch. My nurse said to apply the powder, then spray on barrier film, 3 times in a technique known as crusting, you could also apply a barrier sheet before putting on the wafer, first smear on a little anti fungal cream. Suggest you also use Eakin Barrier Seals or one of the other brands like Convatec or Coloplast, they all do them and will send out free samples of all their products if you phone them, they stop... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Inflammation and colitis
C CandiceT
Scott F Candice, when a J-pouch is working well it really doesn't need any attention. It's prudent to have periodic pouchoscopies, but it's not really essential. There are actually lots of causes of uveitis, but inflammatory bowel disease certainly is an important one. The acid reflux can be unpleasant, but it usually has nothing to do with IBD. It's understandable that being sick is stressful, but at least don't worry about not having had treatment for years - it sounds like you may well not have... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Foley Catheter issue
R RML613
CeeeeCeeee I'm female and I cannot control things so that I either urinate or defecate. I end up performing both functions at the same time......no matter what! After all of these years.....since 2002.......I've given up! Easy for me as I'm seated on the toilet for both functions. I don't think I would ever be able to urinate standing up with my J-pouch. Only time I have a problem is when I have to given a urine sample. I cannot give a "clean catch" unless I catheterize and I've forgotten how to do so! [ more ]
RML613 Well, for the record, and for "posterity"- that is - searches on this site for painful Foley Catheter and J-pouch, this is what I found. At least in me, activity in the pouch seems to trigger a bladder spasm which is very, very unpleasant. If the catheter is short term, i'd just drink to avoid the pain. Otherwise, eat, and when the time comes, (likely shortly after eating), ride out that pain seated, and as the pain subsides, engage muscles to relieve the pouch. Once the pouch is emptying, I... [ more ]
Jan Dollar Gee, I don't know. Enemas maybe? Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch Stricture/seized/closed
JS Jpouch Stricture
Scott F Jan has offered several important insights here. Sometimes we're obliged to weigh alternatives which are each riskier than we'd like. It's critical in these cases to try to maintain a rational approach to all of the factors, and not get distracted by the smaller stuff. For example, Jan's point about getting well first is clearly the Most Important Thing. After that you consider your options. [ more ]
Jan Dollar Another item to note is that in the article, 30 days off biologics is what it considered reasonable. Since dosing with Remicade is 6-8 weeks apart after the initial induction. Performing surgery between doses will give you that 30 day window. When I was on Simponi, the dosing was monthly, so I just delayed my next dose after surgery for a couple of weeks. But, cross that bridge when you come to it. Get well first, then worry about take down later. Jan [ more ]
Jpouch Stricture First, let me reply to Scott Thanks so much for that article. Very interesting read and obviously something to strongly consider. It makes sense to me. That was my first thought that having any type of bowel surgery while taking a TNF medication could be dangerous. In response to Jan thanks for your feedback as well. I'm glad your still here and always appreciate your feedback, after all, I am going with your suggestion on the Remicade now while still wearing the pouch Obviously, I will be... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Sore around stoma
Melissa JeanMelissa Jean
Former Member After using ConvaTec products for many years, my Stoma Nurse said they wouldn't be suitable for the loop ileostomy and, like a fool I trusted my Stoma Nurse advice and persevered with the stoma products provided by the Hospital; I endured nothing but problems; eventually I reverted to using the ConvaTec products and what I relief. I never had any issues when using the ConvaTec appliance with the loop ileostomy. I too was concerned whether the pouch/bag/wafer/flange or whatever would stick to... [ more ]
Melissa Jean Thanks I will look in to that! I have an appt with the ostomy nurse today as I can't keep a seal and have changed the bag about 10 times in 24 hrs. I'm guessing due to raw skin and not being able to stick to it. [ more ]
Former Member If the paste you have mentioned, is a filler which helps seal the wafer to your skin; that kind of paste will normally contain alcohol, which will sting and burn like crazy when applied to broken skin. I endured the same as yourself whilst awaiting takedown and after trying many creams and the powder, the only product which provided near instant releif, healed and protected my skin within days, was ilex protectant paste. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Terrible rectal birning
MIKEEYMIKEEY
LibertyJ Thank you for the prayers . I appreciate it. It was a rough patch, but I am doing so much better... working on "training" my J pouch so I don't have to go to the bathroom 5 minutes after I start eating . Definitely try the baby oil & cornstarch.. those two were lifesavers for me... Sure hope the steroid cream will help you. [ more ]
MIKEEY Yes, I have been tested for fungal infection. My doctor has ordered me steroid cream for my rectum , so hope it helps everything else has not including calmoseptine, just told it is bad irritation. Thanks so much. [ more ]
Jan Dollar Have you ruled out a fungal infection in the anal area? Chronic use of antibiotics can do this. It can be very painful. Try OTC antifungals for a week or two, then call your doc for a prescription, either topical or maybe even oral. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Recovery after colectomy/ileostomy
Melissa JeanMelissa Jean
Winterberry Hello, Gold. It may take weeks before your pain and BMs settle down to manageable. Are you using Imodium to control your extreme frequency of BMs? That was the first thing my surgeon told me when I was having too many BMs: Imodium up to 8 tablets per day, no more than that. The pain you are having may be from the surgery because it is very early days post reversal. There is swelling inside and your new plumbing is trying to sort out how to work after weeks or months with an external bag. I... [ more ]
Gold Hi All, I am a 54 year male, living in Michigan. Had UC for 22 years, last year (2016) had sigmoid part colon removed, was diagnosed with non-hodgkin Lymphoma, had 6 cycles of Chemo, in March of this, had total colectomy, was diagnosed with Colon Cancer, had 6 cycles of chemo, On August 4th, I had Ileostomy reversal surgery. Since than I have Rectal pain, and almost 30 BM's/day. When will the trips to the bathroom get better? Thanks [ more ]
Melissa Jean Thank you! [ more ]
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J-Pouch ForumsHelp! Need advice now!
burning and red raw
MN marc nolan
jhills I used to have this so badly and it hurts like heck. My cause ended up being "Dairy in any form" My dairy allergy is so bad I have to stay away from the beef too. Freaks my system right out and even bleed. I can do other meat products fine just nothing from a cow. If I have to have a dairy fix, I Must take it with a digestive enzyme! This helps my system break down the dairy it can't digest. It comes in chewable form at an all natural store or pills to swallow. Try going with out dairy for a... [ more ]
Winterberry Hello, Marc Nolan. Have you seen your doctor for a scope to rule out pouchitis? Or could be a stricture that is stopping complete emptying? There could be some minor leakage and residue that is causing the raw burning. A bidet squeeze bottle or bidet attachment to your existing toilet will help heal the burning. [ more ]
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J-Pouch ForumsHelp! Need advice now!
In pain
R Rhianne
Scott F This sounds like an anal fissure. They are generally treated with nitroglycerin, nifedipine, or diltiazem applied to the sore area. While you are waiting to see your doctor, sitz baths may help. Try not to let your stool get hard, and try not to strain on the toilet. It can take a lot of patience to get through this - good luck! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Abcess at anastomosis
LA Leila airhart
Leila airhart Trying now to get an appointment at Duke with an colon rectal Dr who has some experience with these abcesses. Thank you Jan! When I first got my surgery in 2000 there was no one to talk to. Our pouch health us our life! [ more ]
Leila airhart Saw one today and he had never seen one and wanted to leave it alone. Need Dr in NC to work on it. Will try sending info to the colon rectal Dr who didn't know what to do to find one. I only have two inches left of rectum. Thank you [ more ]
Jan Dollar These are treated by drainage. I had a drain inserted through my butt cheek, under C-arm fluoroscopy by an interventional radiologist. You need to see your colorectal surgeon. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Diarrhea .
E Enterin
Enterin I understand, thank you. I continued to drink the therapy, I will consult with a general practitioner for as long as possible. [ more ]
Scott F An antibiotic's job isn't done when the symptoms clear up. It has to be taken long enough to usually prevent the problem from coming back. [ more ]
Enterin ❤️
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J-Pouch ForumsHelp! Need advice now!
marijuana pills with j pouch and IBS
MIKEEYMIKEEY
MIKEEY Thank you, I am unable to take flagyl , it makes me very sick. I have spoken to my GP doctor and it seems that now everything now seems to be doing very well for me. Again, thank you so much and God Bless. [ more ]
maggies4 Hi Mikee. I see you are from NY. I live in LA, CA. Who did you get these scripts from? Your GP or a GI - usually Flagyl is given first. Please ask you doctor for another script. The hybrids they make today are amazing medically. They actually have so many different hybrids, including ones that keep you alert. There are many scripts that are given that are excellent for pain, and like everything else you will see what works for you. Do some research and see what script would be best for you. [ more ]
MIKEEY Thank you [ more ]
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J-Pouch ForumsHelp! Need advice now!
Still adjusting 7 months after take down?
J Joanm
JourneyToWellness @Joanm it's 2 years later, but I'm trying my luck. I read through this thread and have a very similar profile to you (I'm 5 months post op). What did you do to get the leaky gut under control? I'd love to hear how things have progressed. Thank you! [ more ]
skally I had UC for 20years & finally when cells were changing - did the deed in 2010- total colectomy ! ended up with kidney failure & after 2 weeks of vomitting bowel, spent another 2 weeks on tpn Over the next 5 years with a bag suffered major depression & my wife of 40 years divorced me 2015 met a wonderful GI nurse who helped me fast track to a pouch Stage one was difficult as not really enough bowel to work with & 4 weeks in hospital 6 weeks of badly burned skin from enzymes... [ more ]
TE Marie I wonder how much experience your GI's nurse has with j-pouchers. Plus the OTC Imodium costs more than the prescription - assuming you have prescription drug coverage. Maybe taking it sooner will help enough. I waited a year thinking they said that it would take that long to recover. I ended up having cuffitis and c.diff at a year. It is good that you are being more proactive about it. Solray and LifeExtensions are both brands I've used. The PlantFusion is hypoallergentic so should be safe... [ more ]
See all 19 replies...
J-Pouch ForumsHelp! Need advice now!
Still in Hospital 6 weeks post J Pouch surgery...HELP!
Y yogs
yogs Winterberry, Things have improved over the past few days. I am expelling gas and eating solids. Rectal foley and all the IV has been stopped and hopefully home soon. I did read about the bidet and will definitely look into buying something very soon. Thanks a lot for all your advice. [ more ]
yogs Sharon, your post made me laugh reading about speeding tickets. Thanks for all the advice you have given. Will refer to them whenever needed. I did take morphine almost everyday when my pain was horrible, my surgeon never had a problem with although I checked with him before taking them so often. Anyways am out of it now and its a good lesson for future. I am on solids now with 6-7bm/day. They are planning to discharge me in the next few days. Hopefully things only improve from now on. [ more ]
yogs Lambiepie, i have been doing those excercises you suggested past few days and they do seem to be helpful. Will keep doing them from now on. [ more ]
See all 12 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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