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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 ForumsHelp! Need advice now!
Bo Shen - Needle Knife Procedure
C chalmersd
Scott F Strictures can occur with an otherwise successful pouch revision. They are usually quite treatable, but that doesn't make them a delight. [ more ]
Pouchomarx Why after the revision with Remzi do you need to keep going to get dialated? did the revision not work? I had my pouch totally redone by Remzi 8 weeks ago and so far so good. Going to get reconnected on March 7th [ more ]
clouseau 5 months ago Shen did me instead of his normal balloon dilatation, I didn't notice any difference. [ 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 ForumsHelp! Need advice now!
BMS OFF THE WALL AT NIGHT
bederyparisbederyparis
clz81 Ok, then perhaps that's not it. I agree with reading all the other posts. Lots of tips for nighttime issues. My pouchitis issues started 6 weeks post take down. I went from sleeping throught the night to being up every hour. I started antibiotics a couple days later, and it fixed everything. Unfortunately for me, I have to manage chronic pouchitis. [ more ]
bederyparis HI CLZ81 - Its been like this most of the 4 months. [ more ]
clz81 bederyparis...if this is a change from your normal routine (had you been sleeping mostly through the night in the past 4 months?)...then i would suspect it could be a bout of pouchitis that you can quickly get treated. however, if it's been like this for the last 4 months with only 6BMs during the day and always getting up at night like this, i would try some of the other poster's tips. every 45 minutes, however, in my opinion, especially at night, would make me lean toward pouchitis. [ more ]
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J-Pouch ForumsPouchitis
mistake made by me
palm55152palm55152
Jan Dollar That's OK. It definitely should not get you banned or anything else bad. That is, as long as you gave your email to someone you want to have it. There is nothing to fix. I already removed your email address from the public post you made. Have you gotten any unwanted emails? If so, let me know. Send me a private message, if you like, and we can discuss. We have had problems with a person who trolls and harasses members. Jan [ more ]
palm55152 I gave out my real e-mail address to someone on here [ more ]
Jan Dollar I am as confused as you are. I don't know what mistake you made, but you are not banned or blocked in any way. Since you were able to create this thread, you are a member. What exactly are you talking about? Hopefully we can sort this out. Often, sudden changes are due to browser or system changes on the user end. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
not emptying
S stellababy
Handh I am a new member and new to blogging...After years of battling Ulcerative Colitis, I went to the Mayo Clinic in Mn. and left with a K-pouch. Now the pouch will not empty completely and I need a doctor in the Phoenix area. Mayo clinic (PHX) does not contract with Mayo here and they will not make a referral. Please let me know if you have a referral in this area. [ more ]
Jan Dollar Have you been checked for an anal stricture? It is a pretty common complication. Jan [ more ]
Angie Wilson I would check with your surgeon or GI person if this is happening all the time. Could be a simple fix - perhaps a part of pouch is inflamed and is causing you this problem - have you tried to ask and see if a medication would help to see if it's inflammation? Sometimes I would get so worried about something and their was a relatively simple fix. I hope your situation turns out to be easy to fix. [ more ]
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J-Pouch ForumsOstomy & Skin
Any one have a diverted jpouch
AllyKatAllyKat
AllyKat Staff, so I reconnected last Thursday. I also had my ostomy for chronic pouchitis. I am doing Entvyio infusions to keep my pouch healthy. It's still too soon but I'm hopeful. I rather go that route. then go thru pouch removal. You might want to try fatty acid suppositories. They helped a lot as well. I honestly didn't think I be in so much pain, nauseau, gerd, sour taste, etc. The pouch seems to be working fine. My surgeon did a scope and found minimal inflamation before he proceeded. [ more ]
Saff HI Allykat, Yes I am I the same boat.. my pouch was diverted in 2010 and I was fine with it like that until about a year ago - now I have ongoing diversion colitis with pain, and leakage. I am slowly working on accepting the final surgery - removing of the pouch and all. Let us know how you go.. [ more ]
LORI726 On phone and can't see dialogs with this new format!! Big surgery today!! You are in my thoughts and prayers. Hoping everything goes well and your pouch is happy, happy, happy :-) [ 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 ForumsK-Pouch Korner
Side-effects of Flagyl, Cipro?
B Bodoni
JLH Extreme tendinitis in every joint from Levaquin, which is in the Cipro family. Painful! Several bouts of Pancreatitis from Sulfa based meds. Also not fun. [ more ]
TE Marie Years before having my colon removed I got c.diff from taking Cipro for sinus infections. I wish I could have taken it for my pouchitis. I took a lot of flagyl for pouchitis until I it was making my peripheral neuropathy, in my feet, worse. I was alternating augmenten and xifaxan before I had surgery diverting to a permanent ileostomy. The latter is very expensive but is specific for intestines. (There's a TV commercial out marketing it for IBS with diarrhea. It includes a pink cartoon glob... [ more ]
skn69 I ended up with ligament pain and inflamation while on Cipro...another nasty side effect. Sharon [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-pouch removal
SD Sue Dublin
TE Marie Right on everyone! SOLOMOSEAL , you have been hit hard with UC and all it entails in a few years. I had decades with UC before surgery. Hopefully your j-pouch gets better. I was told it could take a year to recover from the surgeries and others here said it could be 2 or 3 years. You have youth on your side. Please don't let this nasty disease and dealing with your j-pouch rule your life. [ more ]
Lambiepie After reading all of the above posts, I see that each of you is right! Our journeys are very personal as are our reasons for making the choices we make. That's why the most important question we can ask ourselves is,"what is most important to ME." For me, it was wanting to reduce some of my pain and uncertainty as I also suffer daily migraines. It was needing more consistency because the uncertainty of every day was messing with my head. It was knowing that I had a highly skilled surgeon who... [ more ]
Mysticobra Yes. I agree it is a personal... Very very personal decision. Solo. As for being so young I do understand how you may feel. It is a tough to decide and I would feel so much different if I were in my 20's. I cannot imagine. I am so fortunate.... I have been married close to 39 years and I have a wife who could care less if I have a bag. She want me healthy. Big big factor to have someone support you. She has been so supportive through... Well... A very long time... 20 years of it. I have had... [ more ]
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J-Pouch ForumsK-Pouch Korner
Catheter in 24/7
J Jasmine 2
skn69 When I had to keep my cath indwelling due to a peristomal hernia I found two solutions. One was the abovementioned tube but it did not work the way that it should on me because of the hernia. The other was to get a colloidial patch (sort of a thick transparent patch (looks like a sheet of those blister bandaids) that helps to heal the skin) about 3x4 inches, cut a slit to halfway in and a keyhole. I would then stick it to my clean, dry skin with the stoma sticking out of the middle. I would... [ more ]
JLH this is all very helpful to me. this is my 2nd day of inserting catheter on my own, and am on the far side of the learning curve. will only get better!!! so far i've faired down my syringe to better fit into the catheter. also, have determined that knelling in front of toilet is best for me, but that's not going to be sustainable in public rest rooms. sharon--can you send me the message you sent to jasmin? thanks, janet [ more ]
skn69 Jasmin, I responded pn Facebook to your post but wanted to add something here. When my pouch was down and twisted and had to keep the tube indewelling someone (a kind soul from here) suggested that I contact a manufacturer of ileo/k pouch caths for ideas and samples...there was a nice guy who had invented a semi-permanent indwelling tube....it is much larger and shorter than our usual caths...and has a 'bubble' at the end that you fill with water (using a syringe) that holds it in without... [ 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 ForumsHelp! Need advice now!
irritated anus -feels like fire .
bederyparisbederyparis
SoHappy I would try cutting out the alcohol if you can. This may be causing more bile to be released and taxing your system. I eat supper early as possible and try not to eat after. I use wipes, calmoseptine when needed but I also use good old A&D ointment to help wipe when I am sore. Just a little bit on the paper or wipe makes it easier to clean off and pamper the skin. [ more ]
Angie Wilson Have used the cholesterol meds Jan suggested to slow things down in past and back in the day, we used "A and D ointment" on anus. Also use baby wipes to this day every time - they are by the toilet in my house. I agree with whoever said (and you never know when this will happen) - sometimes the bile acidity burns like a son of a b. Have those wipes (you can get them in little carry packs to put in your wallet) with you. In a pinch, I can remember being out with friends and getting an ice... [ more ]
Caroline Seguin Hi, I too was suffering from butt burn. But a nurse gave me good advice and since then I'm much better. I use baby wipes every time I go to the bathroom. I wipe until perfectly clean. I never use toilet paper anymore because it's very irritating for the skin there. I use wet toilettes every time. And then I use ointment with 1% dibucaine and apply it. It works very well since I've given up toilet paper! Good luck [ more ]
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J-Pouch ForumsK-Pouch Korner
Underlying Cause of SIBO
B Bodoni
Jan Dollar For us, the primary factor is the lack of the ileocecal valve, which prevents backflow of stool that contains a high amount of bacteria from the colon to the small intestine. After colectomy, the j-pouch or k-pouch takes the place of the stool reservoir, but there is no valve between it and the upstream small intestine. Yes, the small intestine does take on the role of water absorption after colectomy, but this is even true in those with an end ileostomy, yet SIBO is not a big issue for... [ more ]
JLH having followed this forum's threads about SIBO i am wondering what the association is with colon removal. some of us, who lack a colon, have developed SIBO over time. part of the SIBO problem is an abnormal osmotic reaction in the small bowel. (another key factor is, of course, bacterial overgrowth.) considering that the colon functions to remove some liquids--sorry, not expressing this with good medical terms--might it not make sense that over time the small intestine starts taking over... [ more ]
Jan Dollar Actually, yes. But there is no one cause. It is more of a symptom or syndrome associated with a wide variety of disorders. http://www.siboinfo.com/associated-diseases.html Jan [ 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 ForumsHelp! Need advice now!
Ileostomy reversal
N Natalia
Mysticobra Good luck to you. I wish you the best come January! [ more ]
Nichole29 Hello I'm new to this thank you all for your opinions I will be having my reversal surgery on Jan 2016 the intestin eruption happened Nov 2015 I'm just counting down the days it has been a long messy journey for me and I'm glad able to know I'm not alone and that there is people I can get some advice from thanks [ more ]
deweyj ^ lol. indeed. wolfe, we each travel slightly unique paths but follow the wise pointers listed above in various forms, titrating to your own situation and over time you will almost forget that you don't have a colon any longer. but don't forget and remember to drink drink drink, dehydration is one of the easiest things we can try to manage well so it doesn't become a problem. good luck. [ 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 ForumsHelp! Need advice now!
How long after step one do you get energy back and gain weight
M Momma
Angie Wilson Hope doc can get him some help with the nausea. [ more ]
Momma Thanks. His gut is pretty slow. He only empties his bag 3-4 times a day and it is on the thicker side. He tried the ensure but says they are heavy and make him feel nauseous. We are going to dr today for follow up. [ more ]
Jan Dollar Is he taking anything to slow the gut so he can absorb more nutrients? It is very early and this may mostly be loss of retained fluids that is common after surgery. Have you tried supplementing with something like Ensure? Easy to diegest compared to a regular diet. But, keep a close eye on him and continue to monitor his weight. If it does not turn around in the next few days, be a squeaky wheel with the surgeon. Jan [ 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 ForumsOstomy & Skin
jpouch to temp ileostomy: major anal discharge problems
E elooney
TE Marie Hopefully he is doing better. I was diverted to a permanent ileostomy 8/31/15. I had many chronic problems and my j-pouch never did work like it should. I didn't want another ileostomy as my temp one was a nightmare. My surgeon at Mayo's suggested excising it and going to a permanent ileostomy. I was not up to that reovery, mentally, so she agreed to divert to a permanent ileostomy. I don’t understand surgeons that won't let people have these surgeries. It is probably because none of mine... [ more ]
Saff Hi Elooney, I'm sorry that your partners discharge kicked in so early... I had my disconnection in early - and was good for 4 years or so, but now have constant issues with discharge sadly. And yes it very frustrating, I understand that there are no reliable treatment options. Enemas with fatty acid may help short term, but I'm not sure they are a long term option. I wish I knew the answer also. [ more ]
AllyKat My recovery for this temp Ileo has also been hard. Physically and mentally. It was done lapro so I was taken by surprise it was so hard. I also had a Ileo for a year 15 years ago so mentally that surprised me as well. I think some of the physical had to do with my age 63, and the inflamation. I too said no more surgeries but I so hate this bag, and now that I have this diversion stuff thrown into the mix, pouch removal oh no no no that's one surgery that I don't think I can ever do, so my... [ 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 ForumsOstomy & Skin
Wafer without tape?
S Starry01
TE Marie I ordered samples of Sure Seals too. I love Coloplast's but my skin broke out the last few times I used them and I love them. I cut off most of the flange of a Coloplast sample wafer, as they are too large, and the smile like shape ones were great. I haven't tried a true wafer without tape yet, just this self styled one. I'm currently using Convatec convex 2 piece ones. Good Luck everyone. [ more ]
Starry01 Thanks for the suggestion of sure seals. I've seen them but never tried them. So glad that works so well for you. I received the coloplast samples this weekend but didn't use them yet bc I have meetings and training sessions all week at work. My hope is to try the first one Thursday since I would be able to come home if needed Thursday or Friday. I may even wait to order some sure seals just in case. [ more ]
Mysticobra I am getting some from all manufacturers. I have to try different ones cause the skin is getting irritated. Not from leakage but I think from using the same thing all the time. It may be the adhesive used by different companies. I don't know. I am new to this and I think... Think trying different ones is the way to go to see what is the right most comfortable fit with the least irritation. But I really like the soft materials some are made of. Question for some who have wore an appliance for... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Irritated skin
MysticobraMysticobra
Lambiepie I have Ilex Paste in my cabinet - I was afraid to use it early on when my skin was irritated because I was afraid that nothing would stick on top of it. I wasn't sure how to use it. Anyway, my skin cleared up after skin prep, powder applications and that was that. Can it be put directly on irritated skin and left to dry and that's that?.... Richard, definitely use a ring around your stoma before applying the bag. Jan's right, things do heal even under all that armor. My stoma and muscles... [ more ]
Catinthehat I just tried to order ilex from my pharmacy like I have been doing for years and was told that it has been discontinued. I then checked online and if you can find it the price is 2-3 times what I paid for it a few months ago. (was $6.50 per tube) [ more ]
Jan Dollar Yes, I did not make that clear that Ilex is completely different from stoma pastes. It is specifically for healing irritated or excorated skin from stool leakage. Jan [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Sharp pain in what's left of rectum
A AndeeLWesterz
Jan Dollar My first thought was also a fissure. You should call your doctor if it persists, especially if it worsens. Jan [ more ]
Hermione Hi I started having this about 6 weeks after take down , I have an extremely active pouch! It felt to me as if a staple was sticking in me - it turned out to be a large fissure. It is as you describe but also felt like I was passing glass during BM. [ more ]
See all 2 replies...
J-Pouch ForumsOstomy & Skin
Probable reversal
heverhever
hever Thanks Bunny Lady, yes it is a serious decision, but the pain the J pouch, or rather the rectal area is causing makes me want to rip it all out right now. If the cause of the pain can't be rectified then i'm reversing, real sick of all this drama after years of pain. Its great to hear the products have improved!!! I think like you that I have waited too long for reversal, putting off going back to the illeo,but unless I get some good answers next week from my specialist I want to be reversed... [ more ]
Bunny Lady I had J Pouch in 1994, lived with pouchitis for about 18 years. Frequency and pain became unbearable and in 2014 had reversal to permanent ileostomy. It took me about about 1 year to adapt. I also had ileostomy (temporary) in 1992 and the products have dramatically improved since then. It's a permanent and very serious decision to make, not to be taken lightly. It has changed my life, I waited too long to have the reversal. [ more ]
hever Thanks Jan, hopefully the reversal will be successful, worried bout getting a fistula like some people have but can't really see what choice I have now. Anyway i'll see what the specialist says in a couple of weeks Heather [ more ]
See all 4 replies...
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 ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
10 Days Post Takedown... Can't Poop
M M2S
Jan Dollar I sure would not use opiates in your case, since one of their primary actions is to slow the gut. That is the LAST thing you need. I would suspect that the burning you experienced with the Fleets was due to the concentrated saline solution. Glycerine suppositories have no salt in them. But, I cannot imagine why they would work if you cannot pass liquid or gas without intubation. Glycerine draws water into the bowel, like the Fleets enema, but without the saline. I saw in your other post that... [ more ]
Angie Wilson I hope you get some relief and soon. So sorry you are going through this. So glad you have great wife and nurse mom. The family support is so helpful. I hope you mention the biofeedback idea Jan suggested. You never know which idea will be the magic one that will finally help. Keep asking and don't give up - easy to say, I know. You have support here on the pouch forum. [ more ]
M2S Thank you for your comments. I am very blessed to have an amazing support system. I am 32, have a wife that won't leave my side, and a nurse for a mother who still won't cut the cord. They are a great support and advocates for me. I have not been given opiates but is on my list of things to ask about in my appt today. Everything else seems to be fine. My surgeon suggested trying a fleet enema or glycerin suppository but the tiniest amount of fleet gave a strange burning sensation that really... [ more ]
See all 9 replies...
J-Pouch ForumsFAP Forum
md anderson and FAP
ksrksr
Angie Wilson I hope you caught it early and get great care. Write to us and keep us posted if you feel it will help you. Praying for good news for you. [ more ]
ksr I had my first appointment at MD Anderson with Dr. Lynch last Wednesday. I now have an appointment with a sarcoma oncologist. [ more ]
Chuckus I goto Mayo Clinic here in Jacksonville Florida...........and would highly recommend them. I also know of a few friends who have FAP that have gone to MD Anderson...... [ more ]
See all 4 replies...
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 ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Please Help - liquid stools
T TWeav
TWeav Thank you everyone! [ more ]
deweyj if you are having high output, you have to ensure that you don't dehydrate. that would mean you need to continue to imbibe. you might have to add sodium to help retain water, and or also maybe a sports drink along the lines of PowerAde, Gatorade or a hydration powder like Drip Drop, there are many varieties available now. [ more ]
Megan O More Imodium, and a titch less liquid? [ more ]
See all 7 replies...
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 ]
See all 4 replies...
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 ForumsHelp! Need advice now!
Fainting- Jan can you help?
A akteacher
Angie Wilson This is frightening - I went through a period of this about 15 years ago. Went to ER twice. They never could figure it out and called it "vaso-vagal" response - having to do with the vagus nerve (sorry if spelled incorrectly). Good news - it stopped happening. Who knows why it did? I agree with all - drink and yes, some sugar. I drink propel and G2 along with regular water. Of course, everyone is different. I also try to be certain I'm getting enough protein. That and electrolytes seem to... [ more ]
Buttsy Gosh, here is another P.S. I also found during my worst fainting periods (either dehydrated, j pouch blocked, AZ heat, exercise -sometimes not even very much)....found that my lymph nodes were blocked! Not everyone knows to or how to manipulate the lymph areas...look up The Lymphatic Man online..He was a loss why his wife kept getting dizzy - in a shower, or just getting up, many simple things....finally he found it was blocked lymph glands. He is trying to get the word out there. Someone... [ more ]
Buttsy Was just thinking....sometimes if I had a blockage, (must be that everything clogs for your body to work correctly). I would feel faint, so at that time would go right to liquids only..have learned to practice deep breathing which really helps too. Breathing from one nostril, then another also helps. I found sometimes I held my breath and did not realize I was doing so until I started yoga. [ 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 ]
See all 9 replies...
J-Pouch ForumsOstomy & Skin
what cream or paste to use ? ? ?
Mdz122Mdz122
TE Marie Hi Mike, I'm having a difficult time and am wondering if the Ilex worked for you. Does the skin around anyone's stoma improve using Ilex. [ more ]
Jan Dollar This really sounds fungal. Rather than make things worse, I'd see the doctor and get something prescription. Ilex is great for healing excoriation from leakage (like super diaper rash), but if you have an infection, you need something else. I'd call the doctor. Jan [ more ]
Mdz122 Originally Posted by Jan Dollar: Maybe you need to stay away from those barriers that lock in moisture as much as locking it out. Try an antifungal powder like Zeozorb or Caldesene. But, if you are really wicked excoriated, then Ilex is your go-to. Jan Jan, I tried the Caldesene powder and it didn't seem to help much. I went back to trying Destin again because I was told the zinc is really what you want. Everything down in my crouch area is red, there is no normal looking skin. All of it is... [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Disability Question
Animal LoverAnimal Lover
TE Marie Right on animal lover! Angie, I feel older too. In more ways than my health. I'm turning 60 this month and most my age are still in good health. I found out who my real friends were after my disability kept me from doing things like lunch or golf. I don't miss the others any more. Plus I 've gotten to know good caring people here and in other support groups. Nice thing the internet does for us. It and people like Bill and Jan Dollar for this site! [ more ]
Animal Lover To all of you that shared your thoughts, please know "we are not crazy and we should not feel ashamed for 'needing' to utilize Disability...we are disabled and we earned it...period". God Bless you all... Animal Lover [ more ]
Devora1 ❤️
See all 17 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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