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J-Pouch ForumsGeneral Discussion
New to forum with UC.
RustedFoxRustedFox
Jan Dollar Welcome, welcome, welcome, RustedFox! Boy oh boy, we definitely could use as many folks as we can get with medical knowledge and experience. Any time you have to spare is very appreciated. Being a patient and a medical professional gives you a unique position to "understand both sides of the stethoscope." So, again, welcome to our forums! Jan [ more ]
lablover Welcome to forum! From a spouse of a 'j-poucher'. [ more ]
Maverick Plus Glad you're here. You'll find that the people here are very welcoming and supportive. [ more ]
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J-Pouch ForumsGeneral Discussion
question about pouchitis
AW Angie Wilson
Angie Wilson Thanks Scott and Jan. The information was so helpful. For me, I think my situation is "normal" for living with pouch, now that I heard from both of you. I wanted to check. I do think I lived my life really fully with the pouch for about 23 years - then I had some things go wrong and I have not really been doing so since. The reasons for that are multi factorial and are problems only I can solve - and some are just working on coping skills, etc. Rx: major depression and PTSD is part of it,... [ more ]
Jan Dollar Not too much to add to Scott's reply. However, one thing I need to point out is that pouchitis is mostly an issue for those with IBD, not FAP. It can, and does occur, but is more likely to be an occasional thing. But, you can also get bacterial overgrowth (SIBO), which has the same treatment, antibiotics. A diet high in carbs tends to contribute to the symptoms. Another consideration is IPS (irritable pouch syndrome), which is essentially the same as IBS. The symptoms can be quite similar to... [ more ]
Scott F Pouchitis can usually be diagnosed on examination (or biopsy) during pouchoscopy. This doesn't always match severity of symptoms, though. Pouchitis most commonly causes bathroom urgency and frequency, as well as nighttime accidents. Pouchitis usually doesn't cause bleeding, though it can. For most J-pouchers an episode of Pouchitis can be effectively treated with 10-14 days of Cipro or Flagyl (antibiotics). In some cases, Pouchitis keeps coming back shortly after antibiotics are stopped;... [ more ]
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J-Pouch ForumsGeneral Discussion
1 year ago yesterday
skn69skn69
AllyKat Wow Sharon, your r one though cookie! [ more ]
JLH wow sharon, i hadn't realized that surgery was so recent in your history! yes, must stick to our end goal of what we know is best for us. you did it and were up and running in no time. amazing. hope you are off on vacation. janet [ more ]
Jan Dollar Well, I don't know about "never say never." Sometimes it is appropriate to give up. Still, as long as there is a chance and you are motivated, I say, "Go for it!" jan [ more ]
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J-Pouch ForumsGeneral Discussion
Didnt go to the bathroom for 12 hours whats going on?
dgtracydgtracy
dgtracy i did take some Milk of Mag the other day to see but probably didnt take enough to really do anything. may try more this next time [ more ]
rachelraven I sleep all night, that's generally nearly 9 hours no BM. I've gone longer. It's not *necessarily* a bad thing. However for me, Metamucil, even in the beginning, made things too thick for me. I'm intolerant of Flagyl, but Cipro makes things thick for me, too. I imagine those 3 together might be making things thicker for you. With my "old" pouch these days, and my stricture, I actually take Miralax 1-2x daily. Sometimes I do a mag sulfate to loosen things up instead. It varies. I need a... [ more ]
Mysticobra When I had my pouch I had days I would not go all day. I was not taking any meds. But mine didn't last long it would start back up. But when it did happen it gave me a nice day and time to heal up down there. I don't know why it happened though. Just did. Richard. [ more ]
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J-Pouch ForumsGeneral Discussion
edema in pouch
P pauln
pauln Thank You Scott,I am seeing my GI very soon,will discuss then [ more ]
Scott F Paul, the edema is (essentially) very mild swelling, one of the signs of inflammation. OTOH if that's all that's going on, it's most likely a Very Small Thing. If it were me, I'd ignore it, but if you can't let go of it then it might be best to call your doc to discuss. [ more ]
pauln Thank You both Jan and Angela for your thoughts and help.I have researched every place I could,and I cannot find anything on edema. [ more ]
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J-Pouch ForumsGeneral Discussion
Being told j pouch bad
WT wolfpac tim
Jan Dollar The docs at Cleveland Clinic have seen it all, and if they say you are not a candidate for a redo, I would believe them. I am sorry to say this, but sometimes you just have to accept the realities. Getting rid of intolerable frequency and pain seems like a good outcome, even if it means ileostomy. Jan [ more ]
wolfpac tim I was told neither of those option would work for me because of the radaition damaging my insides. I have talked to cleveland clinic and they basically said same thing. So starting to sound like if I want pain to go away it is bye bye j pouch [ more ]
Mysticobra Tim. I had my pouch removed after two plus years of problems. Now if you can go a different route... Yes... I would have my self. I was more or less terrified to have to have an ileo the rest of my life. But after a month plus I find it was the right choice and I can live with it. Now... I am near 60 yrs old. Didn't want to spend years trying different things. But if you are a young man I would explore my options. Otherwise an ileo eliminates... Well it did for me.... Eliminated all.... [ more ]
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J-Pouch ForumsGeneral Discussion
hypergranulation next to ileostomy
PouchomarxPouchomarx
Pouchomarx it bleeds a little and a little painful if touched but not bad at all.Its right where the stoma and the skin meet. I spoke with my surgeons nurse and emailed her a photo and she said I can come in next week if I want and her and the stoma nurses will take a look but she is not concerned about it at all. She said its common and they see it all the time. My preop is on Feb 18th so she said I can wait till then unless it keeps growing or gets worse. I think I will wait it out. [ more ]
skn69 It depends if it bothers you, your ileo or if it bleeds profusely...if non of the above then you should be fine if you keep a close watch on it...if not they can burn it with a silver nitrate stick. I have k pouch with a stoma that needs intubation numerous times/day and thus the cath hooks a bit and casuses granulation...on a regular basis I burn it back (about 2xs/yr)...painless...my surgeon taught me how. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Official (???) "Crohn's" diagnosis. To remove pouch or not?
n/an/a
n/a Thank you, Jan. That information will be so helpful when I see my GI. And all in one document! [ more ]
Jan Dollar Hope springs eternal! I can't imagine mesalamine being very useful though, because it does not work so well with Crohn's. You might be a good candidate for Entocort (budesonide) to help induce remission. Plus, there are many other meds you have not tried yet. http://www.mayoclinic.org/dise...eatment/con-20032061 Jan [ more ]
n/a Thanks Jan. A surgical repair for this fistula is definitely out of the question. I was told that even pouch removal would not guarantee the demise of the fistula. The plan, for now, is to try medical management for awhile, and make a final decision by the 4th of July. Ha! We'll see if I can stick to that. [ more ]
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J-Pouch ForumsGeneral Discussion
ilex?
CatinthehatCatinthehat
SwollenColon I've got a new tube I'll mail you if you need it. [ more ]
TE Marie At my appointment with my Stoma NP yesterday I was happily surprised how much my skin improved when I took it off for her to examine. The night before, when the output slowed down, I removed the appliance. I slathered Calmoseptine on my skin and replied it as needed for a few hours. I washed it off with the same brand of liquid they had me use in the hospital. I blotted on liquid antacid, dried with the hair dryer like C.E.M. describes above. I am going to turning the bottle upside down and... [ more ]
CeeeeCeeee Irritated (or worse) skin around the stoma.....here is what worked for me years and years ago: After removing the wafer and appliance I stood in the shower and let warm water wash over my stoma and the surrounding skin. I washed the area gently with my fingertips and Ivory soap. When out of the shower I dried the area with a hair dryer set on cool. ****Then.....I applied the thick, white liquid from a bottle of Mylanta (generic is fine) after soaking a cotton ball with the solution. I dried... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch aware GI in Baltimore
P Pluot
Scott F I've got someone in Towson who has a few J-pouch patients, and I've been happy with him for over ten years (for both GI and internal medicine). PM me to discuss further, if Towson is the right part of town. There are one or two GIs at Hopkins that see more pouch patients, but I don't have names, unfortunately. [ more ]
Miri Did you ever find a pouch aware GI in Baltimore? I see this question has been asked a few times on this board but never answered. I would love to know if you found someone great! [ more ]
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J-Pouch ForumsGeneral Discussion
Work after JPouch reconnection
J jen77
Jan Dollar Personally, I would schedule the standard 6-8 weeks. If you are good to go sooner, then your surgeon can release you. But, better to have your employer set for the more prolonged scenario, instead of trying to scramble to find a sub at the last minute if you have to extend it. Jan [ more ]
atwoodt I was ready to go back a week after my takedown. You may want to take two weeks just in case there are any complications or it takes a little longer for you to get your energy back. [ more ]
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J-Pouch ForumsGeneral Discussion
DC-area GI practice recommendation, preferably with jpouch experience
SBSSBS
Miri Scott, may I ask which GI you use? I am desperately looking for a good GI near Baltimore. Thanks! [ more ]
kc80 I see Dr. Vincent Obias at George Washington Hospital. He studied under Dr. Fazio at the Cleveland Clinic (Fazio did my J pouch). Would definitely recommend him to anyone in the area. [ more ]
SBS Thanks for the replies, everyone. I'm not very good at doing this on my phone & haven't been around my pc recently. Lol. At this point I'm more interested in scheduling a checkup for myself; not to make it all about me or anything like that. ;-) Deathstalker, Dr Smith is the one that did my pouch all those years ago. I stopped seeing him regularly when he moved from GW to Washington Hospital Center; too inconvenient. I'll check-out the referral. [ more ]
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J-Pouch ForumsGeneral Discussion
Help! 2 weeks post op/30+ BMs a day
A Aylaganz
SolomonSeal I remember being in your position. It seems now that I have had chronic pouchitis from the start. My first 3 weeks were absolute hell. Worse than UC. I could not function physically or mentally and the complete sleep deprivation started cracking me mentally. My suggestions are this: make sure you are using a bidet and *patting* *completely* *dry* (with a handtowel) every time. If you do not stick to this regimen, the anal irritation will be terrible. If you can keep your perianal skin both... [ more ]
SoHappy Hang in there. It is not uncommon to have to go frequently in the beginning. Visit with your gastroenterologist if you can about a trial of antibiotics. You can have pouchitis, hemorrhoid, irritation from wiping so much. Try to minimize wiping, using a wet flushable wipe if needed, follow up wiping with a calming cream like desitin or calmoseptine. Stay hydrated. Avoid fresh fruits and vegetables for a while along with high fiber foods. Keep it simple. Simple meats, simple cooked vegetables. [ more ]
Jan Dollar This early, it is impossible to say if you have pouchitis. It happens, but not often. The fact that you are incontinent would lead me to think you are one of the rare cases of early pouchitis. You can try switching from Metamucil to Citrucel to see if you get a better result. I am one who did not do well with Metamucil, as it made things worse by increasing gas and urgency. You might get better results with Lomotil than Imodium. If the switch makes no difference within a few days, call your... [ more ]
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J-Pouch ForumsGeneral Discussion
Scope Shows Ulcers/Pouchitis
temotytemoty
Jan Dollar Palm, I deleted your email from the post for you. To send a private message, just click on Angie's name (in blue) in one of her posts above. A window will open with options, including "start private message." Just click on that and you will be able to send her a private message that only you two view. You can carry on back and forth as much as you like, or exchage private information. Hope your pickleball goes well. Personally, I am happy to just go for daily walks outside and do some... [ more ]
palm55152 oh I did not think anyone else would do that because of the nature of the forum I am so very sorry. yes pls help me to private message. I am going out this morning to try and play some pickleball--joints are better but I am sure this will take a toll. I just get too depressed when I cannot be outside doing something. I told you I cannot take citapham(for depression I think) so now it is worse...I am taking deep breaths it has to pass soon. a year is way too long to be feeling like this ty... [ more ]
Jan Dollar Oh, please do not post personal info, like email addresses in the public forums! Anybody can view these and there are those who use software to mine such data. best to share this via private messaging. If you don't know how to edit your post, I can do it for you. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Thinking about surgery
H HilarioBlakeney
Spooky Yes, that's the thing. You'd have to know whether it's a bonafide allergy or intolerance separate of UC, or just a result of being in active UC. Basically, even though my UC was acute and was only in full flare for about 6 weeks, I could eat virtually NOTHING. I ended up on liquid diet and later on TPN. Obviously now I can eat a great deal more. [ more ]
Scott F I read the OP as asking about food allergies (e.g. peanuts, milk, etc.). Spooky's post made me realize that the question was more likely about the broader food intolerances common with an inflamed colon. I think most J-pouchers see substantial improvement in that area. For a long time (for example) I couldn't handle anything more complicated than ramen. After my J-pouch surgery I began eating anything and everything, and could finally enjoy coffee. I apologize for (probably) misunderstanding... [ more ]
Spooky Yes, I agree with Scott, in that surgery is not necessarily an automatic fix for food intolerances. That being said, unless you have bonafide food allergies or problems with lactose or gluten, for instance, it may be that certain foods that aggravated your UC may not in fact be as problematic once you colon has been removed, since you won't be in active flare. In general, many people find they are able to better tolerate a wider variety of foods after removal of their colon as compared to... [ more ]
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J-Pouch ForumsGeneral Discussion
testing tomorrow..prayers
PouchomarxPouchomarx
Pouchomarx they called and had to reschedule 2 weeks further out due to Dr Remzi being out of town.. [ more ]
Jan Dollar Hey! What happened to your February takedown date? Jan [ more ]
Jeffsmom I hope all the best for you! Jeffrey is seceduled for take down January 28th! He is so happy. It appears that everything has cleared up or worked itself out. Both of you have been through so much. All good thoughts! [ more ]
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J-Pouch ForumsGeneral Discussion
Success with bacon? Worth a try!
V Virdent
Angie Wilson Just saw Dewey's reply too - I am sort of with you. This is going to sounds nuts - but I had one of those NDE things happen during a botched operation. Yep - the white light and all that. Ever since then, I have become less concerned with my physical health and more interested in spiritual health. I became way less concerned with material things and acquiring, too. So, I do try to eat well some of the time - just to have some energy, but I sort of have accepted that as I age...I'm not a... [ more ]
Angie Wilson Thanks for the reply. I have used a blender to do the above, but not the nutri bullet. I wish I could say I notice a big difference in my energy levels - but I don't. I think maybe I'm just getting old and have tremendous adrenal fatigue. I am tired a lot and part of the reason why is I do not exercise enough. I know that is my own fault! I sort of hit a wall - but I need to get back on a program. Thanks for the advice on the nutria bullet. I really appreciate it. [ more ]
Sweetie1234 Hi Angie, I recommend getting a Nutri bullet or something similar. I make a fruit smoothie every morning with yogurt, strawberries, blueberries and banana (or any other fruits you like). Normally the berries would tear up my stomach, but I tolerate them blended. Also, the yogurt is great to provide the good bacteria we need. I actually make my own yogurt since it provides more of the good bacteria. The store bought stuff loses a lot of the bacteria when shipped. You can also use the Nutri... [ more ]
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J-Pouch ForumsGeneral Discussion
Everything looks great!!
PouchomarxPouchomarx
Pouchomarx they changed my surgery to March 7th now, surgeon out of town... only 2 more weeks. [ more ]
Angie Wilson Wonderful!! We will be thinking of you in late Feb., March, etc. as you recover. I'm so happy you got good news. I'm the one with a 30 year old pouch. You CAN do this. I think one of the things this whole pouch and life journey has taught me: patience - oceans of patience. So glad you are getting the highest quality care. [ more ]
Brewbirds Great news!! Prayer is powerful! Take it slow till then.. [ more ]
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J-Pouch ForumsGeneral Discussion
Grateful
J Jaypea
Angie Wilson So glad you are doing well! Makes me smile. Yep - gotta watch out for those fruits - I eat them at home Way to go with a great attitude! [ more ]
Jaypea Nice to know another satisfied customer. [ more ]
ABees I also had my colectomy and jpouch performed By Dr Raval..I honestly can say he first saved my life and then gave me my life back!! Just over a month out from takedown and the outcome is better than I could have hoped for Thankful every day for his skill! [ more ]
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J-Pouch ForumsGeneral Discussion
Lomotil headache and fatigue
MB Mountain Baker
Angie Wilson I never could take it - headaches, etc. - I'm small and thin - so maybe that is why. But, my Dad - who is a big, tall guy couldn't take it either - same thing - headaches. So, maybe it's just an individual thing. I think your idea of trying smaller amount is good - and then if that still bugs you, forget it and try other things. Always lots of liquid with the pouch. And electrolytes need replacing - especially as I've gotten older. I have to be more mindful about remaining very hydrated. [ more ]
Spooky Some people take lomotil daily without issue, but we all react differently to medications. In fact, lomotil is classified as a narcotic, hence some of the side effects you've reported. I've never tolerated lomotil well myself. It always made me drowsy/groggy. [ more ]
Mountain Baker I weigh 125 lbs so maybe one Lomotil is enough to give me a headache or maybe I'm just sensitive to lomotil. Maybe that's why I stopped taking it 27 years ago. I drink a lot of water so I shouldn't be dehydrated. I still feel lousy at 2:00 today. Theresa [ more ]
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J-Pouch ForumsGeneral Discussion
Genetic testing for UC?
B Brewbirds
CTBarrister I must have misunderstood the original post. I thought this question was being posed with regard to possibly having other children. [ more ]
Jan Dollar Brewbirds, since you already have children I see no point in discussing the pros and cons of having children that *might* inherit a tendency towards a disease or place a financial/emotional burden on the parents. I am sure you feel as I do, that your children are a blessing and you will deal with whatever comes along. I was diagnosed with UC at age 15. My husband developed it at age 45, long after we were married and had children. My 2 boys both then had a 30-50% lifetime risk, with both... [ more ]
CTBarrister I am the same as you as far as being the only one in my family with IBD. I had this conversation with my GI many years ago and I believe what he said was the risk of a child developing IBD was 25% if I married a healthy woman or 50% if I married a woman with IBD. I made the decision not to have children in part for this reason, but as well for a number of other reasons. I believe it would be objectively selfish and also not terribly smart to bring a child into this world not knowing where... [ more ]
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J-Pouch ForumsGeneral Discussion
Can you get colon cancer while living with a j pouch?
FM Former Member
CeeeeCeeee Years and years ago I had a routine occult blood test ordered by my ObGyn. It came back positive even though I had absolutely no visible bleeding or, for that matter, no symptoms whatsoever of IBD. Saw a GI doc for the first time. He did a colonoscopy and declared me "fine"! No abnormalities. A year later I went back to him complaining of full on symptoms of "something". Rectal bleeding, cramps, loss of control of B.M.s, etc. I had to practically beg for another colonoscopy. Up until the... [ more ]
Former Member I did see my gastroenterologist and he thinks doing a scope of my stomach is more important than doing a scope of my pouch. Although he does want to examine both my pouch and stomach. I told him to wait until I get the results of my next blood test, because my gut feeling is nothing is wrong with me now, since I've abandoned the use of Aleve and other non steroidal anti inflammatory drugs, I do feel better now. In fact I noticed how my blood pressure went down to 92 over 60. I think it was... [ more ]
Spooky Yes, do see your GI. The important thing is that you rule out anything sinister. Even though cancer is probably least likely, my opinion is always to err on the side of caution. Keep us posted on your results! [ more ]
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J-Pouch ForumsGeneral Discussion
Attn: FAPers; hightened risk of hypertension?
RJG-RossRJG-Ross
Chuckus Ross, I read the article....... http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2518080/ Also the others......... That's talking about Adrenal Tumors, yes, but again doesn't show any direct correlation of CVD and FAP...........sure, there is a tangent, but, no correlation directly to CVD. Is there a heightened sensitivity or predisposition to adrenal tumors for those of us with FAP? Yes. That's a very well known fact, though the statistics show "1-3%" of all us with FAP, I'm of the mindset that... [ more ]
RJG-Ross Angie, I was about to suggest your being tested for Vitamin D levels and the possibility of spending time in the sun, especially after your response in the SIBO post. But, here I just read that you have problems going out in the sun... skin/nerve sensitivity in your arms... I think it's very complicated when you are taking so much medication. Being homebound is a great problem and becomes an increasing problem with age, since with age melanin (responsible for the first step in producing... [ more ]
Angie Wilson Thanks for all the information. You have done a tremendous amount of due diligence work. I have not followed studies on FAP at all since I gave blood to Johns Hopkins about 20 years ago. One thing that is interesting to me personally is the endocrine/cortisol issue - I know I have issues with these things - I won't go on and on about details. Whether it is because of FAP, a hysterectomy and oophorectomy, and/or just getting older - who knows. Probably multi factorial. If I may per chance... [ more ]
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J-Pouch ForumsGeneral Discussion
Cramping
LivingLiving
Jan Dollar As long as it is relatively fleeting and not constant, it should be OK. This seems likely to be some "kinking" of the intestine due to adhesions (internal scar tissue). The most common site for this is the stoma site. As your gut settles after surgery, this symptom should settle too. More than a year post op you probably as settled as you are going to get. Like Dewey said, be sure to stay well hydrated. It does make a difference. Otherwise, surgical release of adhesions are the remedy. Most... [ more ]
deweyj how is your hydration? I have noticed that one of the first places I draw a cramp is at my old stoma site when I have been overly active without proper hydration. I had this happen decades after my surgery. still happens on occasion. [ more ]
clwakley I had takedown in March 2014 and I still have these from time to time, especially if I bend over at the waste. I was told they are due to the numerous open surgeries I had and should subside with time. [ more ]
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J-Pouch ForumsGeneral Discussion
Celiac testing
DJ HDJ H
Jan Dollar If it helps, celiac disease affects the small intestine, not the colon. So, if you had colon inflamation diagnosed as UC, celiac or gluten intolerance would only exacerbate symptoms, not cause colitis. Jan [ more ]
DJ H Hi Jan, thanks for the reply! You are right in the grand scheme of things that it doesn't matter as long as I know what to avoid to improve things, but I guess it would have been a piece of mind thing to have something official. I wish they would have done the testing way back when I still had my colon. I still wonder if that was an underlying issue all along. Thanks again for your reply! [ more ]
Jan Dollar Short answer: no. Screening requires gluten in the diet. Biopsy confirms if there is damage consistent with celiac disease. https://celiac.org/celiac-dise...sing-celiac-disease/ Does it really matter whether you have a firm diagnosis of celiac disease or gluten intolerance if the only treatment is avoidance of gluten? You already know there is at least an intolerance. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
memory issues
B Bodoni
Former Member Since stage 2 surgery, I've suffered from dehydration and when severe, to the extent of being admitted into Hospital; I had to really concentrate just to speak. I would lose track of what I was saying mid sentence and totally forget the most basic of questioned asked after I had started to answer. Since takedown, I've never dehydrated to such an extent but at times when I do fail to consume enough fluids or electrolytes, it does effect my judgment, such as making decisions, I wouldn't... [ more ]
skn69 I have had my brain burned out so often from surgery and anesthesia that I thought that I would never get it back...As a teacher that is a tragedy. I noticed that it goes in 3 week and 3 month phases for me...the 1st 3 weeks I cannot even concentrate enough to read a book...the next 3 months I can do basic tasks but nothing requiring concentration at all (reading the tv guide is as far as I get), then I get to the next 3 months I can read books, remember names and do some memory work...in... [ more ]
mgmt10 Oh yes, big time. Ever since my surgeries my memory has deteriorated. I blame it mostly on all the past drugs (pretty much every one to treat UC) I was on. That an the anesthesia. Being under for 8 hours has got to do something to the memory. I always had a good memory so it's a bummer. [ more ]
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J-Pouch ForumsGeneral Discussion
Feeling pressure in my stomach
S stpaulmom
stpaulmom Thanks Jan, I don't have my gallbladder anymore. I've never had an obstruction, but I was wondering about that too. I'll keep watching my diet and monitoring the symptoms. [ more ]
Jan Dollar Could be a partial obstruction, but you'd think your symptoms would worsen after meals. Still, a possibility of a very mild one. However, your symptoms are vague enough that it would be difficult to pin it down to any one thing. It could also be mild gallbladder trouble, mild gastroenteritis from a viral or bacterial infection, early pouchitis, etc.. One thing you can do is examine your diet to see if you ate anything new or unusual in the past week, or increased any one thing (like dairy,... [ more ]
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J-Pouch ForumsGeneral Discussion
SIBO, TMAO, Cardiovascular Disease and J-Pouch/colectomy risk factors
RJG-RossRJG-Ross
RJG-Ross Angie, at the moment and for the next few months, you'll have to make a concerted effort to get spend a little more time in the sun in Dallsas. I live in Guadalajara, Mexico (from NYC) and what would take 30 minutes to get a burn, now takes a few hours. But, thank god I don't live in NYC now! or I would have no means of getting even a slight tan between late September and late April... Ross [ more ]
RJG-Ross Allykat, you didn't take over the thread. People shouldn't be so worried about how much they write. Afterall, the point of the community is for all aspects of support. Who is qualified to judge what person has written more than they needed for helping themself and others? As for cardiovascular disease... It has so little to do with total cholesterol and LDL cholesterol. It probably has more to do with inflamation and low levels of HDL cholesterol. PLUS, for women over the age of 60, higher... [ more ]
AllyKat Oh thanks, I do get out and go to the gym a lot when well. And walk the malls, lol. I can't be in sun cause I had melanoma but do take Vit d and have it checked twice a year. Sorry to have taken over this tread. BTW Heart disease runs in my family but I have no signs of it, even with high cholesterol which I take nothing for, I do take a lot of anti inflammatory Vit, my good cholesterol is very good though. In fact I passed the cardio test with flying colors! [ more ]
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J-Pouch ForumsGeneral Discussion
psc
LB LeVaughn Bluemel
roseviolet I've read studies about the positive effects of Milk Thistle on PSC. Results look promising, but the studies done so far have been informal and more official studies need to be conducted. There is quite a bit of literature on this topic on the web and on the NIH (National Institutes of Health) web site. When I take Milk Thistle daily, my liver tests are great. If I stop taking it, the enzyme levels gradually rise a bit. Side effects appear to be minimal or none, but until official studies... [ more ]
JeffDC Welcome to the club! Alcohol is a definite no. Excercise is a good thing to do-it helps you mentally and physically. But listen to your body. [ more ]
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J-Pouch ForumsGeneral Discussion
Why is jpouch and not BCIR the "gold standard"?
B Badplumbing
skn69 Hi Patty, I have a question for you regarding the pain that you are having with your stoma...(and please do not hesitate to repost the question on the K pouch section or this forum)...have they checked for a peri-stomal hernia? It can hurt and burn like a cigarette burn or be a long-dull, constant pain depending on how big it is and where it is situated along the stoma. When I started having stoma problems in 2007 (post k pouch redo in 2000 and 2004) they never thought about it...Even when I... [ more ]
Angie Wilson Jan - you are wonderful - pouch or no pouch. A nurse to boot. I was a teacher and counselor. It does help that you get the pouch thing, but you'd be out trying to help others in some capacity no matter what your situation. Thanks for your kind replies and I promise I won't bug you. I feel a tremendous amount of gratitude to you and those who started this forum - please know you are appreciated. Don't feel you need to reply - I bet this place wears you out. I get that Yes, this too shall... [ more ]
Jan Dollar Yes, I have a j-pouch. I had my surgery in 1995 due to uncontrolled UC. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Nighttime leaks
J J9Pouch
deweyj this is actually eye opening to this old jpoucher. in the past i never identified pouchitis with nighttime incontinence. but two months ago i began to have routine nighttime incontinence and i couldn't figure what the hell was going on. i mean i have had incontinence periodically but it was episodic not never ending and this was happening for 2 weeks, i finally decided to try some flagyl and bam, it stopped immediately. as my doc and i discussed over my recent dilation pouchoscopy (cooler... [ more ]
Jan Dollar Other probiotics others have had some success with are Culturelle, PB-8, Align, Florastor. I've tried most of those without much improvement in function. The amount of probiotic you get in most any yogurt is miniscule in comparison to a supplement. Imodium (loperamide) is used frequently as a maintenance treatment for high output. However, if this is pouchitis, it probably won't help much. The fact that you are experiencing new symptoms points to pouchitis. Jan [ more ]
Scott F VSL #3 DS is a potent-but-expensive probiiotic that has been shown to help prevent pouchitis. The DS (double strength) is prescription-only. Lomotil is prescription-only, but Imodium is OTC. [ more ]
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J-Pouch ForumsGeneral Discussion
Life expectancy of a Jpouch?
M Momma
deweyj class of 86 too! Michael i was 23 as well. are we jpouch twins? ha. momma, i have a friend who had her one step done by Harris, in NJ right? i hear he only does one steps, unless there are complications during surgery that preclude it. mt Sinai is a fine hospital. with his dad as an experienced jpoucher, with the caveat that we can travel different paths, he should be fine. i did see your recent post about mucosal discharge. i agree with Spooky, i think every organ in our body will be less... [ more ]
Momma Dr. Bauer and Dr. Gorfine are great. Dr. Harris, who used to be in that same office, did my husband's surgery. We went with Dr. Khaitov who trained under Dr. Harris. [ more ]
mgmt10 Glad to hear it went well. He's in good hands there. I met with Dr. Bauer over at Mt Sinai but then ended up in Philly for my procedure. Hope he has a smooth recovery. [ more ]
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J-Pouch ForumsGeneral Discussion
been on cipro for 3-4 months, now slipping
dgtracydgtracy
palm55152 what would i do without you--i can never thank you enough. i called my dr and he will have an rx ready for me to pick up on monday for percocet. i think you have been right all along. not eating much bread and eating some salads. this group has been so amazing for me ty [ more ]
Jan Dollar It sounds like your pressure/pain is related to gut spasm/cramping. Opiates would improve this. Acetominophen or NSAIDs not so much. Jan [ more ]
palm55152 wow what a huge help to me you people are.. i am so happy to take your advice and at least have some hope. as jan told me yesterday i no longer eat carbs but fruit and salad. now one more question i experience pressure (is this pain) and want to stay in the bathroom. when i take a pain pill i feel better is this pressure really pain?? going to space out my vits ty all so so much [ more ]
See all 31 replies...
J-Pouch ForumsGeneral Discussion
Diet?cleans?
U UjohnjC
skn69 I've done a lot of 24-72hr cleanses on nothing but fruits, fresh juices and veggie broths...they are very effective if you just want to clear out your system...I don't use them for any other reason...but I need to warn you...you will spend a great deal of time in the washroom...as a k poucher it is bearable but as a j poucher you may find that you need to sleep there! At the first sign of severe cramping, pain or any other unusual problems please stop...if you are not used to it then you... [ more ]
Spooky Basically, we all have different food tolerances. You are not yet sure of your own tolerances, since you say you haven't tried too many vegetables or fruits since takedown. I'm not discouraging you from doing the cleanse, but considering that you don't know how you'll react, keep in mind that in general, eating a large amount of raw vegetables and fruits may cause excess gas and bloating. Generally, fibrous vegetables and fruits are harder to digest, and roughage heavy diets can increase the... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Sore bum
U UjohnjC
Former Member I find ilex protectant paste is by far the best product to relieve and prevent a sore bum, what is more commonly referred to as butt burn www.ilexhealthproducts.com/usd/products.asp?cat=1 [ more ]
Steve Aneiro You need to use baby wipes when you clean your backside; and then apply Analpharm 1% ointment. Analpram is a perscription ointment that also contains an Praximine, and anastetic (generics for Analphram work well also). You need to do this every time you go to the bathroom. It will get better in a couple weeks. It took me years to figure this out. Good luck! http://www.drugs.com/mtm/analpram-hc.html [ more ]
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J-Pouch ForumsGeneral Discussion
digestion problems, stomach pain, gas, belching...help!
fqfq
Charlie cbnice@verizon.net ❤️
Healthyme Hi Nikiki, You should have to try this Digestic by Mimonis which is good for constipation problems. For sure you can tolerate much carbonation now. I have tried it with me and I can assure it to you. [ more ]
JLH Fq i agree with the suggestions and add to the one about small intestine bacteria overgrowth, SIBO. Look at the lowFODMAP diet. Many of the suggested 'no' foods are on it. Good luck. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
NSAID induced pouchitis??
dgtracydgtracy
Jan Dollar Maybe a month or two. The drug is out of your system sooner, but it takes time for the damage to heal. The length of time you were on the NSAIDs matters the most, as the longer the treatment time, the more damage there is to repair. I still take NSAIDs from time to time, but limit myself to two weeks maximum. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Reversal Question
AllyKatAllyKat
dgtracy I think the amt that you lose is pretty random from person to person, depending on how well you do. my first surgery i lost a good 30 35 pounds. after my second reversal i lost more like 10-15ish. i was doing much better my second go round though [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchitis, cuffitis, bloody mess??? What the heck?
Clever1Clever1
Scott F Pouchitis is most commonly treated with either Cipro or Flagyl. People vary in whether one or the other is more effective and/or causes more side effects. There are a number of other antibiotics that are used, including Levaquin (like Cipro), Tindamax, Xifaxan (expensive!) and a few others. If you can find several that work for you, rotating them every 2-3 weeks is a fine idea, to try to prevent any one of them from losing efficacy. [ more ]
Clever1 Is there a "best" choice of antibiotic for pouchitis? and is it wise to switch it up to help with the resistants issue? [ more ]
Scott F Diversion pouchitis is pouchitis in a pouch from which the fecal stream has been diverted into an ileostomy. It's ironically caused by the lack of "nourishment" of the pouch mucosa by the fecal stream. It does not predict trouble after takedown. It's always better to be on fewer medications, all things being equal. It's also always better not to feel ill. So I choose antibiotics over feeling crappy. Some choose otherwise. Frequent or prolonged antibiotic use carries two negatives: 1) side... [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Dehydration/emptying pouch
KD Kate Deaken
Scott F A small amount of sugar (glucose) turns out to be what increases the water absorption of ORS. If you mix up the solution yourself you could control the amount of sugar, and keep it lower than something like pedialyte, but eliminating the sugar entirely would be an error. [ more ]
drone3 I have never been able to drink those electrolyte drinks they cause my pouchitis to flare up, i think its the sugars. Any other non sugar suggestions? [ more ]
Scott F I'm a big fan of water for hydration, but it really is critical that you not stubbornly limit yourself to water if it's not working adequately. Dehydration is very, very bad for you. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Prednisone and j pouch
RM Rich M
Scott F Prednisone will reduce inflammation anywhere. It's a terrible drug to treat pouchitis, since unlike with a short course of antibiotics the pouchitis would just about always return. Nevertheless, it's a nice bonus when I'm taking prednisone for other reasons. [ more ]
rachelraven I always feel wonderful on steroids. Wish they didn't have such terrible long term side effects. [ more ]
dgtracy I did not know that prednisone can help with pouchitis. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Getting a J-Pouch when UC under control?
BostonianBostonian
Bostonian Originally Posted by aka KNKLHEAD: I had terrible colitis from age 16, finally subsided into my 30s with steady dose of Pentasa for many years -- felt so well that I neglected colonoscopies until I turned 40 and lo and behold, nice big cancerous tumor in the colon. (I had just gotten my Black Belt in Taekwondo -- so it really snuck up on me!) I have been doing the regular colonoscopies the entire 20+ years, so nothing is sneaking up on me. I had my consult with the colorectal surgeon this... [ more ]
aka KNKLHEAD I struggled with lots of surgeries to finally get my J-pouch "right" at Cleveland Clinic. I now have a very well-behaved pouch, 4-6 bathroom trips per day, and much more often lately, sleeping through the night. (My takedown was in August.) I feel super, but don't overlook the "lots of surgeries" part! If you go for it, I'd be extremely picky, if you can be, for a surgeon with many, many, many J-pouch surgeries under his/her belt! I had terrible colitis from age 16, finally subsided into my... [ more ]
hjd Hi, I got my J-pouch in 2000 in the Mayo clinic, Rochester MN. I was advised to have the colon go because I was using medication for too long (prednison since 1982) and because I had a 30% chance of coloncancer in the next 10 years. I had two stage surgery, with the takedown 5 months later. The first surgery is a big one. I made sure I was as healthy as I could get (including going to the gym every other day for four months, something I hate with a passion). It all worked out very well. I... [ more ]
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J-Pouch ForumsGeneral Discussion
Meds..
U UCBloke
Jan Dollar I would call, or email if you can, with the new symptom of rectal bleeding. This is a sign of cuffitis (common) or possibly pouchitis (less common). Mesalamine or hydrocortisone suppositories are the treatment for cuffitis. This is beyond the help of VSL#3 or other probiotics. They are for prevention, not treatment. You should not have to wait months to get treated. Of course, I know that in the UK things are often not as simple as getting a prescription over the phone. Please also tell them... [ more ]
UCBloke Thanks for the reply Jan, I've another few months to wait to go back to hospital for follow up. Just this evening I've spotted blood in my stool ��.. I stopped taking the codeine, was causing headaches, and I didn't want the addiction!. I need to keep eating as I'm losing too much weight. I will battle on until my appointment as my local GP haven't a clue what to do, they just ask me to wait until my appointment. VSL has been discontinued also in the uk (Ireland) and there is no replacement ... [ more ]
Jan Dollar The other options after loperamide and lomotil are opiates (codeine, paragoric). Seems rather odd that the lomotil equivalent would be discontinued in the UK. One other option for unrelenting diarrhea is Sandostatin injections. But, it is quite expensive and usually used for those with gastric cancers. I would not be surprised if its use was highly restricted in the UK. Of course, none of these will work if you have an underlying, untreated issue, such as pouchitis, bacterial overgrowth,... [ more ]
See all 3 replies...

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William J. Johnson
bjohnson@j-pouch.org

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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