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J-Pouch ForumsGeneral Discussion
Takedown done. So here I wait...
P PSH
TE Marie Good for you PSH I've never read of anyone doing so well after take down......but many of us come here because we are having problems. Keep it up! [ more ]
Jan Dollar It is OK to be scared of complications. THAT is normal. But, don't let it consume your thoughts so that you forget to notice the good stuff. Yeah, you will have setbacks, but hopefully they will be minor and short lived. Even if a dietary indiscretion proves to be more of a mistake than you anticipated, it does not mean it will always be that way. Even after two decades of this, I pay the price for something I ate or drank. I don't swear off of it, but weigh the benefits against the risk,... [ more ]
PSH Thanks Jan. Makes me feel much better (as you do for everyone). Like seriously. I feel GREAT. Even road to CVS to pick up a prescription with the wife, and not a hint of urgency or issues. Walking around a lot... had a cup of coffee this am (maybe shouldn't have), and things seem naturally to be squaring away. Sometimes what I read just scares me though. I'm hoping this is a really good start to a long-lasting and successful pouch. [ more ]
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J-Pouch ForumsGeneral Discussion
I'm having trouble controlling the JPouch discharge when I sleep.
DaDDie2DaDDie2
Nicki Hi Eddie and L.DL, I see this post is from a while ago. Any updates? I currently have a loop ileostomy (and probably for another 6 months). This is my second time around with a loop ileostomy and a jpouch disconnected but still producing mucus galore. I hope you guys have the same experience as I did my first time in that my jpouch continence was much easier without the loop ileostomy than with. Do you guys have any suggestions for disconnected jpouch mucus incontinence? It's far worse than... [ more ]
DaDDie2 Thanks L.DL. A best wishes to you as well. Stay strong. [ more ]
L.DL Hey Eddie sorry to hear about your issue, but I can truly relate to you. I also have an ileostomy, mine ia an end ileostomy due to many complications long story which I won't get into, but I also have constant anal leakage which is humiliating especially while you have an ileostomy. The whole idea was to get a break from running to the bathroom, but know I'm wearing a diaper and having constant urgencies during day and in middle of night. I'm constantly humid down there causing irritation... [ more ]
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J-Pouch ForumsGeneral Discussion
Anitbiotics
G GraceB
GraceB Thanks Scott I appreciate that info I will call my gastro tomorrow . [ more ]
Scott F When another doc puts me on an antibiotic (e.g. Ceftin for sinusitis), I try to discuss the plan with my GI. Together we decided in that case to try stopping the other antibiotic (Cipro) for the ten days, and that worked out for me, but you may need both, for now. It's fine to take antibiotics from more than one drug class, but of course you'll be risking more side effects. [ more ]
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J-Pouch ForumsGeneral Discussion
partial obstruction, sibo, c diff ?...advice please
KeepMovinOnKeepMovinOn
KeepMovinOn Update: visual scopes did not show Crohn's disease. Awaiting biopsy results. Scope showed inflammation in the bottom of j pouch which GI doc thought was due to digital exam. Still waves of nausea and occasional abdominal cramping now. [ more ]
KeepMovinOn Oh, and he said the tissue that was bulging down was just a hemorrhoid, diagnosed via exam. That is good news. Just not sure how I got a hemorrhoid considering I'm not hooked up yet... [ more ]
KeepMovinOn Update: So, I saw my surgeon last night. My surgery is postponed...again. He wants to make certain that I don't have a missed diagnosis of Crohn's before getting a j pouch or that there is not a parasitic infection going on. He said it could just be a virus, but he would rather be safe than sorry. So, I saw my GI this morning and I am getting the whole workup tomorrow (endoscopy, ileoscopy, and proctoscopy). I don't think there will be a part of me that isn't scoped (LOL) and I have some... [ more ]
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J-Pouch ForumsGeneral Discussion
Update on Meesh -- 4th Anniversary of Successful J-Pouch Surgery
M Meesh62
rachelraven My hubby (who I started dating right before my surgery, in late 1990) affectionately has dubbed me his "little rumble strip" due to all of the big rumblings and gas blowouts I've had over the years! Good luck to you! My 4 year mark was many years ago, and things were awesome then, too. [ more ]
TE Marie Happy Pouch Anniversary (We are around 7 weeks apart as my takedown was 12/29/2010. I enjoyed reading your story. I've moaned all over this site for the last 4 years and am grateful for the help I've received.) [ more ]
Curly ❤️
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J-Pouch ForumsGeneral Discussion
egg smelling...sulphur smelling gas?
dgtracydgtracy
Former Member ❤️
rachelraven Besides the gas, though, are there any other symptoms? I mean, if things are "pretty good," you just finished abx therapy, and a dilation happened recently, it *could* be nothing. Flatulence stinks! Have you increased your foods recently (knowing you just recently had a surgery). If there are no other symptoms, honestly again, I'd not be extremely concerned. IF you are having increased urgency, increased BMs, more watery BMs, etc., then there may be something to it. But really, J pouch... [ more ]
dgtracy I just finished a 17 day round of cipro and Flagyl yesterday [ more ]
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J-Pouch ForumsGeneral Discussion
singing in the dark
C Champagne
allswell I'm a little confused, you said the bag experience was odd, but then you seem to indicate there were certain foods you couldn't eat and yu had problems. Just need clarification. thanks [ more ]
Fight like a girl Hello...J pouch surgery is not for everyone. And there are some who were told they could have it only to find that it didn't work and had to have an ileostomy permanent. So, it is a personal and medical decision only you and your Dr. should make. By no means should anyone persuade you one way or the other. As far as being normal...I hate that word. No one is normal in this world!!!! [ more ]
Annikki I have happily had my jpouch for 16 years. No regrets. [ more ]
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J-Pouch ForumsGeneral Discussion
Fluctuating platelet count ??
PouchomarxPouchomarx
Kate1026 Oops... I hit submit before I was done and can't figure out how to edit in my phone. It's definitely worth watching your platelet counts. For me, I had normal counts with an occasional concerning count (like 70,000) for years, then went two years with all low counts (50-90,000) before being referred to a hematologist and getting a diagnosis. With ITP, they do not treat it unless you are below 50,000 or sometimes as low as 30,000 if counts remain stable. I have never had to be treated except... [ more ]
Kate1026 For what it's worth, my medical facility's lab uses 140,000 as the lower cutoff for a normal platelet count, so 120,000 would look a little closer to normal here I have an autoimmune condition that causes low platelets called ITP (which originally stood for idiopathic thrombocytopenia purpura, now some doctors call it immune-mediated thrombocytopenia) which is rare, but more common in people with other autoimmune diseases. My platelets usually hang out around 90,000 but tend to tank when I... [ more ]
Pouchomarx Went to hematologist today and he was not sure why i was there? lol.. He stated that platelet counts can indeed fluctuate with autoimmunity,surgeries,inflammations,and medications. He said mine have fluctuated from barely on the low end of normal to the normal range and hes not concerned at all. If counts are consistantly low then we might have an issue. Hes now my favorite doctor!! first doc in a long time i have seen that was not concerned about me and had bad news for me.. [ more ]
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J-Pouch ForumsGeneral Discussion
sharp pain from gas
R RxStudent
Jan Dollar It is the gas stretching the ileum. Stretch pain receptors are the only pain receptors in the intestines. It is probably not just in your pouch, but may be. Gas pain can be quite severe. Gas is mostly caused by bacterial action on undigested foods, primarily carbs. Reduce your overall carbs, especially concentrated sugar. Too much soluble fiber can be a culprit too. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Glucosamine chondroitin
T Teddybearlady
RSco Hi Sharon, The flares could easily be caused by all the walking to work you are doing. Ice is important in reducing them, but their cause is likely the biggest issue to remedy somehow. An elastic wrap for support during walking may help some. Glad you have appointments with your docs soon. Best wishes, Scott [ more ]
skn69 Thanks Scott, I am wating for the end of the Feb vacation period for my Rhumy and PT to get back so that I can have an appt. Will seek diagnosis (I tend to be inflamatory) but this knee thing is different...I suspect that while walking over cobblestones to work I sort of slip sideways and overcorrect putting undue pressure on the knees. Am presently icing everything for 1/2hr at a time and using anti-inflamatory creams and patches. I can't change my activity level because it is the only way... [ more ]
Jan Dollar Good points Scott. My arthritis pain turned out to be inflammatory, not osteo, so probably one of the reasons I did not see relief with G&C. I found that it is important to find out what your underlying conditions are. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Mono
ICCICC
Former Member us Brits call it.... Glandular Fever ......I Googled it [ more ]
TE Marie I hope you are feeling much better by now. I probably take too many vitamins and supplements but have other health problems as well. You are a younger woman and IMO probably don't need many supplements. In addition to what suebear said, I think if your blood work is fine and you have good Iron, B12 and D levels I wouldn't think you'd need more than a multivitamin. I have a nutritionist thats helped with my supplements She said the optimal level for D is higher than the minimum required. I... [ more ]
suebear I had mono pre pouch and it's not something you can avoid catching. Not all virus's will hit you this hard; in the 14 years with a jpouch I have only had a vomiting virus once. It's good to have electrolyte beverages on hand for these incidents. If you are vomiting or have diarrhea make sure you are getting adequate fluids......and you will have to sip them constantly. If you can eat, ingest foods with high salt content to help you retain fluids. If you can't eat, drink bouillon or something... [ more ]
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J-Pouch ForumsGeneral Discussion
Sooo sore :-(
GN Gentle Now
TE Marie Besides metamucil have you tried Imodium? It slows down the gut. I have a better time using the prescription Loperamide over the OTC Imodium. It was difficult for me to tell how the Imodium was affecting my BM's. It doesn't kick in as soon as the Loperamide capsules. When I take metamucil it's in 3 capsules 2-3 times a day, which equals less than 2 tbls. Indy_Dave brought out a good point. eating smaller amounts and more often. When everytime you eat it causes pain then you don't feel like... [ more ]
Indy_Dave heres some tips for butt burn.... avoid like the plague: greasy fried food - had a pouch for 7 yrs and greasy fried food still gives me a day and a half of trouble...Sugar of any kinds tend to make the acid much worse....anything of bulky size will cause cramps/urge to go - eat smaller portions and space them out....dont skip on eating cause it just makes for liquid butt burn...chew well too use A n D ointment before and after pooping - I have tried everything and this works the best and its... [ more ]
Gentle Now ❤️
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J-Pouch ForumsGeneral Discussion
Depend Underwear Commercials
CTBarristerCTBarrister
skn69 Fantastic marketing campaigne...now they need to do something about the colour and design of those things? Now that they are out of the closet they need to think about lacey prints and florals??? A design competition? Make those darn things sexier! Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
International Ointment thread
S speedyg
Gentle Now I comeple tell agree about the cod liver oil.. I had enough to worry about without adding the smell of fish! people recommend ilex and Calmoseptine. I agree they're good. So just some other thoughts are: you can use your skin barrier wipes that you use with your stoma. Keeping fluid off skin is the name of the game. Also, keeping dry. So I used a zinc based powder first when I had butt burn, then followed with my barrier creams. Dries the area completely and adds a barrier (when you try to... [ more ]
Jan Dollar When I used a barrier cream, it was zinc oxide. Either plain or with an antifungal (like Baza by Sween). I did not like the cod liver oil ones, mostly because I did not like the nasty fish smell on my fingers, butt, or underwear. Hated it as a diaper rash ointment for my kids, for the same reason. Other than that, it is fine. Now that I am nearly 20 years post op, I can't remember the last time I needed it. Something to look forward to, I suppose! But, you are smart to be thinking... [ more ]
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J-Pouch ForumsGeneral Discussion
Gas, not pouchitis. Bacterial overgrowth??
J JD1943
rachelraven Hope it helps you! To do it "right" you have to eliminate all offenders, then introduce slowly. Good luck! [ more ]
rabbit81586 Wow, perfect! That's exactly what I'm looking for. Thanks for the book suggestion, ordering it now. I had a blooming onion on Saturday which started this backslide. I think I got it under control with rice and salmon last night but that sounds great. Thanks again. [ more ]
rachelraven Here's a link to books. I know it says IBS, but it is restriction of offending sugars to help with gas, which in our case is what we sometimes need. http://www.amazon.com/s/?ie=UT...f=pd_sl_7t2ef9eqwp_b [ more ]
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J-Pouch ForumsGeneral Discussion
Adhesion removal 1/29/15
jipalmerjipalmer
GraceB HI Sharon I am sorry to hear that you have problems again. Hoping you have a quick recovery but than again do we ever recover from this awful disease . I know that you have been dealing with this for a very long time. I always read every ones post and there are so many that have problems. Wishing you well and all the others Grace [ more ]
jipalmer Thank you all so much for your replies. It makes me feel like I'm not in this alone. These are great suggestions...I cut out milk today and had some ginger tea. I felt better than I did yesterday so I guess I really do just need to take it one day at a time. Any suggestions for non-dairy soft foods? My husband found dairy free chocolate ensure which actually tastes pretty good and some dairy free icecream/yogurt. I've got soups too. -Jill [ more ]
skn69 I do have a lot of different ginger products too...candied ginger and ginger in vinager (like for sushi) that I eat with rice. It helps my k pouch to function properly (keeps things flowing and reduces the gas/cramping). Right now I am eating tons of 'hot' foods like Indian curries...no idea why but I crave rice and curry (very weird for me) but my gut appoves the mixture. Keep up the fluid intake, it helps with the swelling and healing. Sharon ps. Alley, yes, surgery again..7 weeks out and... [ more ]
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J-Pouch ForumsGeneral Discussion
Straining
slightly_creativeslightly_creative
Deanna6 I am about 3 1/2 months after takedown and went straight from too many bm's being out on cipro and that constipating me and having the issue you guys have talked about with the pebble like bm's. I did some reading and thought I would try the Metamucil. I started using twice a day and have now moved to using three times a day with meals and it has helped tremendously. [ more ]
Thanh Originally Posted by asd (Guest): I suggest to all those who have difficulty emptying the pouch to try using a catheter. Have been doing it for the last 3 months and it's revolutionized my life (in a positive way) ! Look for the thread "self-catheterization" on the forum for details about how to do it Minded read more pls j-pouch.org thanks guys [ more ]
Mysticobra Hello. I was told and mentioned in other posts that I could not because my surgeon said no. Well... The last time I went in... Three weeks ago I think... Maybe two. Memory is shot. She said I could either..... Catheter or enema. Whew. I have not tried either yet. I have no problem getting rid of anything this morning. But I will be doing it in the future. The reason she said I could do it now is that she felt confident I would not damage anything as everything is healed so well. I waited... [ more ]
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J-Pouch ForumsGeneral Discussion
Jan- Entyvio question
H hattie
Jan Dollar For me, part of it is convenience. Self injection avoids the inconvenience and time waste of an office visit and time it takes to infuse. With self injection, you inject at home at your convenience. I've been on biologics for ten years and that would be a lot of office visits and time sitting there! And, yes, giving your veins a rest is a good thing too. Not to mention that it is cheaper for you (no office copay) and for your insurance company. I am always for the most cost effective... [ more ]
hattie Jan thank you so much for your response. Just 2 few short related questions. Why do you suggest opting for medication such as humira that I can inject myself rather than biologic infusions... is it because they are safer or is it a matter of convenience or expense or efficacy of the particular drugs involved? (Also pertinent is the fact that my veins are extremely uncooperative and usually require the anthesiologist to start the IV for pouchoscopies after 4 or so attempts by the tech or... [ more ]
Jan Dollar From what I was able to glean from the literature, Entyvio is different than either steroids or biologics. The end result is similar, with a blocked inflammatory process. Steroids work all over the body in a more global sense and are damaging to your organs, eyes, etc. biologics mostly block TNF-alpha molecules from entering the inflammatory cascade. Entyvio blocks white blood cells from entering the gut and participating in the inflammatory response. My first question is why not Remicade,... [ more ]
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J-Pouch ForumsGeneral Discussion
ivig intravenous immunoglobulin update
EndiEndi
Endi I've now been going every 4 weeks since September. I am still doing well. The Crohns and Pouchitis are still both under control! I hope this info has maybe helped someone out there :-) [ more ]
Endi Yes, every two weeks indefinitely. I go for my next infusion Monday. It takes about 4 hours. The first few days after the infusion, I feel a slightly euphoric energy. I don't know how long I will need to do this , but I don't mind going every two weeks for the time being. I have been advised to drink a lot of water the day before, the day of, and the day after the infusion. It does make your blood slightly thicker. I've read that it might not be a good option for individuals with blood... [ more ]
boy's mom Yes, thanks for update. How long will you be getting shots every two weeks? Is that indefinite? Thanks. [ more ]
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J-Pouch ForumsGeneral Discussion
Other surgery
G Gumnut
Gumnut Thanks Ladies - all your replies are much appreciated . . . I like the Jewish Proverb - in amongst the seriousness of it all though I did have a smile as he has also had both his rotator cuffs done also - but with lots of effort, his shoulders are still quite strong ( and mine and the family's are here to hold him up when needed - he's 72 this year My very best wishes to you all in your lives and with your families also - even though we don't know each other, there is a bond between us all. [ more ]
Gumnut ❤️
rachelraven Foot surgery, no pouch issues. Wisdom teeth removal caused no issue, either. C-section and then ovarian cyst surgery, both times took a couple days to get the pouch going again. It's more likely to have gastro issues when they're messing around in your abdomen vs say, a foot surgery, however, opiate pain meds can slow things down, too. Bowels hate to be touched, and can get sluggish after those kinds of surgery. And like Sharon said, general anesthesia is also often worse on them, too. [ more ]
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J-Pouch ForumsGeneral Discussion
Terrible itching
Deanna6Deanna6
Former Member ❤️
Jpouch1064 Yes I have used some hemorroid creams that had lidocaine in them. I think it was anusol. Haven't done it in a long time. If I remember correctly, it really stings at first, but it did help by numbing. [ more ]
Deanna6 I have taken some advice and trying to go back a little with the diet. Cut back on the dairy and go pretty bland again with chicken, eggs, wheat and seems to have helped. Wondering if anyone has used lidocaine on their bum for butt burn ? I have used and liked the calmoseptine IN the last but when it's bad I'd love it to be numb! Thoughts? [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch removal
buttoutbuttout
buttout Thanks to everyone for your replies. I'm getting enough information to make me feel a little more at ease.. Thanks. [ more ]
Jan Dollar Up at the top right os this page there is a box labled "Dialogs." Click on it and you'll get to a page of the dialogs you are participating in. You can also set your notification settings so that you get an email if there is a new comment in your dialogs. To do that, click on "Manage" in the menu bar and choose your account. Choose "Notifications" from the list on the left. Jan [ more ]
KeepMovinOn How do you look for replies? [ more ]
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J-Pouch ForumsGeneral Discussion
accident already? !
dgtracydgtracy
dawn58 Metamucil was GREAT for me. It's worth a try. [ more ]
jipalmer Hi dgtracy, I just wanted to commiserate with you. I just recently had surgery as well (1/29/2015) and am now home and feeling like "did I go through all this for nothing??". Although my surgery was different (I've had a j pouch since 2004 and had to have adhesion removal surgery for constant bowel obstructions), I've been home less than a week and am back to feeling how I did before the surgery...bloated/gassy/uncomfortable every time I eat. I hope that this is just a bump in the road for... [ more ]
Spooky dgtracy, It's frustrating, I know. I had my first and only daytime accident with the j-pouch about 3 or 4 days after coming home from the hospital. Before that everything had been fine. I had been watching television, stood up and had sudden urgency, and just didn't make it down the hallway to the bathroom. I was so upset and frustrated, thinking that this would be my "new normal." Thankfully it was an isolated incident, and I just chalk it up to getting used to the pouch. The point is,... [ more ]
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J-Pouch ForumsGeneral Discussion
disability
T Tamtam
TE Marie You probably have Chronic Fatigue too like most of us with fibromyalgia. IMO chronic fatigue as well Chronic pain also causes depression and anxiety I am on 2 different antidepressants and xanex as needed. My Internist, Neurologist and Psychiatrist are all involved with the doses and what kind of antidepressants. For example my neurologist prescribed me amitriptyline for my migraine headaches which prompted my internist to wean me off of another antidepressant. Then my psychiatrist changed... [ more ]
Tamtam TE Marie - I am just very frustrated right now and don't know what to do. I am extremely tired all the time and somedays can barely function. I work full time but it's getting harder and harder. By the end of the word day, I'm done! I have been diagnosed with Depression, Anxiety, Fibromyalgia, and recently Neuropathy. I had the colectomy with ileoanal anastomosis surgeries back in 1993 and 1994. I had UC that went to toxic megacolon so I had emergency colectomy. My GI doctor is 2.5 hours... [ more ]
TE Marie I am disabled and have many health reasons for being so. Below in my signature, are the highlights of my major health problems. My disability date is recognized as the last day I worked, and that was just for 1.5 hours. My first surgery was 7 months later. I filed first with my private insurance after my take down surgery. I filed for social security disability benefits a year after that. You need to have the support of your doctors before you start the process. My claim was approved the... [ more ]
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J-Pouch ForumsGeneral Discussion
Help!
J Jason4
BillV I also have FAP and am thankful that my GI does regular scope exams and takes biopsies wherever he feels necessary. This is how he determined that I had high grade dysplasia in the anal canal and recommended surgery to eliminate the risk of cancer. A good GI should be able to determine if the suspect area is scar tissue and should take biopsies if he has any suspicion of dysplasia. With FAP, regular scope exams are necessary (both upper and lower). In my case, only a limited number of... [ more ]
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J-Pouch ForumsGeneral Discussion
2nd surgery compared to 1st
G Goody21
rachelraven Two step, years ago. Second was much easier, IMO. I was out of the hospital in 4 days, and in full time nursing school 4 months later. Though i I guess with your 3 step that's not really equal. Guess my second will be your third. [ more ]
ccanepa456 I had a three step as well. I am going to be honest, for me the second was the worst. I am in pediatrics and they talked me into getting an eipdural afterwards for pain management which Im not sure why because the pain pump with dilaudid worked fine I thought. But I ended up getting a UTI from the folly catheter and my epidural was all bad with leakage and making me extremely itchy etc. It just was more painful for me, but once everything was figured out it was okay. I would say if you had... [ more ]
joekroscen I had my 1st surgery 7months ago it was emergency, i recovered in about 10 days. i just had 2nd stage 3 weeks ago and it's a bit harder than the 1st one but only for about a week, no rectal pain tho but i do go pass mucous about 4 x day, only thing is your stoma is much smaller and no more loop, i dont like this stoma always leakage. currently waiting for 3rd stage. Dx with UC 2012 meds: corticosteroids, Asacol, 6 MP, Salofalk, Infliximab End ileostomy 2014 no more meds [ more ]
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J-Pouch ForumsGeneral Discussion
Seeing a J pouch in my future
thumprharethumprhare
thumprhare Well I have a date next week...happy thoughts and prayers this way. Will keep you guys updated. [ more ]
ks1905 Originally Posted by thumprhare: I just don't know how my family and house is going to function. Much less, how I am going to function. I am glad I found you all. I hired a cleaning service for my house. It was well worth it for me not to have to worry about it. You should be able to drive as soon as you are off of the narcotic pain relievers; I was off of mine within 2 weeks of being released. The hospital arranged for a home nurse to visit me every day and to help me change my appliance... [ more ]
Annikki I was 24 when had my pouch surgery. It was a rough first few weeks after...had a massive infection in my incision, 10 days in the hospital and then a nurse visiting for a week to pack my wound BUT then my recovery was quicker and I was out doing stuff. Three months after I moved to a city 8 hours away from my parents and started my life again. [ more ]
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J-Pouch ForumsGeneral Discussion
PEG Tube (Feeding Tube) Removal
MN Mark N
skn69 I had a gastric tube put in twice for pouch surgeries (once for a month & the other for 2 weeks) but came out without any problem...sort of felt like the 'drop' in the roller coaster when it came out but didn't hurt (it was sutured in to my stomach so the sutures hurt more than the tube removal...they were red and swollen). I was very acidy so there was a bit of green acid burn when it was pulled but it healed beautifully. No complications Sharon [ more ]
BillV I had a gastric tube that was kept in for almost 2 weeks after surgery. I did experience a sharp pain when it was removed, but it was quickly over and I had no further pain. I believe a gastric tube is similar to a PEG tube. [ more ]
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J-Pouch ForumsGeneral Discussion
Dilated j-pouch ?
TE MarieTE Marie
TE Marie ks1905, Thanks for responding. I'm on my way for the results consultation and your information is helpful. I had a GI X-ray with contrast this morning and am glad to be done with tests! [ more ]
ks1905 I had my done about a month ago and things are so MUCH better but I am starting to get some small symptoms again. I think that I'll need another dilatation soon. [ more ]
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J-Pouch ForumsGeneral Discussion
Jan, etc: Uceris (budesonide rectal foam for pouchitis?
H hattie
Jan Dollar It should be as effective, if not more. This is because you get a more concentrated effect where you need it, without an increased dose. As for expense, expect it to be high, since it is new and no generic available. I am not sure how your drug plan works, but I get brand name non-formulary drugs for the same co-pay as other brand name drugs. But, this is only true if my doctor writes the prescription with exception codes that allow for that coverage. I suppose it is easier for my doc,... [ more ]
rustyskyline The study says that the budesonide is as effective as oral metronidazole; that's fine but how does it compare to oral budesonide (entocort). I'd also like to know if it still costs as much. I know it varies from health plan to health plan but for me entocort is wildly expensive. Almost as crazy as Xifaxan. [ more ]
Jan Dollar Yes, it should be effective for pouchitis, if that medication works for you. Being a more targeted application, the value is a more lical concentration of the drug and less systemic absorption. See the study below. http://www.ncbi.nlm.nih.gov/pubmed/11856075 Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Surgery
bobbymsgtbobbymsgt
Lambiepie Bobby, I just had this surgery four weeks ago. Please feel free to PM me; I will share anything and everything with you. I have some irritation around my stoma and a lot of gas output but, other than that, I'm very happy that I went through with it. I am no longer running to the bathroom in pain and that's BIG. [ more ]
Catinthehat seems like a major decision. Has your j-pouch failed? [ more ]
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J-Pouch ForumsGeneral Discussion
One week post op ileostomy, 1 of 3 jpouch surgeries
SF Sharon Flynn
Virdent Hey Sharon Im glad you're doing well. You say your old life doesn't exist, but hey it'll be back before you know it, I think it took me a little over a month from the first surgery before I felt physically strong enough to really start getting back in the groove. [ more ]
JeffDC One day at a time. Your body is still trying to figure out what just happened to it, Focus on the long term, and listen to your body. [ more ]
TE Marie I know it doesn't look like it now but things will improve. This process is a long one, a really long one. I thought my hysterectomy was bad. That was a piece of cake compared to these surgeries. Most people thrive after recovering from these surgeries, especially those that had UC. Hopefully you will be able to participate in your daughters lives more after you heal, than before when ill. Good Luck [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchitis/first year after takedown
slightly_creativeslightly_creative
slightly_creative Thank you Jan, your responses are always welcomed and appreciated! Going to read through that article now! -Mike [ more ]
Jan Dollar Actually, it is acute pouchitis that is common (the type that resolves quickly with a course of antibiotics). It becomes more and more common as the pouch ages. Chronic or recurring pouchitis is not common. There are structural issues that can cause chronic pouchitis, like an anal stricture that prevents proper emptying. Anal stricture is pretty common. in this thread in the Pouchitis Forum there is a link to a very comprehensive article about pouchitis. [ more ]
slightly_creative Yeah It would be nice seeing the article, but I've been online reading on it a lot today. It's a bittersweet situation really, sure the days suffering with UC are over (which was hands down much worse) but now trying to deal with and get over this is just another bump in the road. The cipro alone wasn't doing the complete job so today I picked up more Flagyl, I'm hoping to wake up tomorrow feeling better! I find that combination of medications does the trick. I'm going to balance the... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Anthem Data Breach; Customer Info Exposed
CTBarristerCTBarrister
CeeeeCeeee Those of us on Medicare know first hand how little our federal govt. cares about our security. Our Medicare membership number is printed in bold on our Medicare card and.........it is exactly the same as our social security number plus a couple of letters! So much for feeling safe! [ more ]
ks1905 Reports are that they didn't encrypt the Social Security Numbers, which makes me upset as a former customer of Blue Cross. It seems like a simple security step since Social Security numbers are so important. [ more ]
ks1905 More info on it.... looks like State-sponsored Chinese hackers. http://www.bloomberg.com/news/...een-in-anthem-attack They will use this information to send out fishing emails to get people to click on links and download Trojan malware into their computers. With all the personal data the hackers got they can make these emails look very realistic and convincing. [ more ]
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J-Pouch ForumsGeneral Discussion
Color And Shape Coding Of Medications
CTBarristerCTBarrister
CTBarrister Originally Posted by Scott F: I don't think the manufacturers give a moments thought to this. Pretty thoughtless of them. I can recall back in the 1990s when my Grandfather had early onset Alzheimer's and a few other health ailments and had to take many pills every day. He would forget to take his pills, or confuse one with another. He probably took about 10 pills in all. So we bought him this pill dispenser and each pill was put in its own compartment of about 10 different ones so he would... [ more ]
Scott F I don't think the manufacturers give a moment's thought to this. They do like to give brand-name medications a distinctive appearance, though. [ more ]
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J-Pouch ForumsGeneral Discussion
ABL (Accidental Bowel Leakage)
C CeeeeCeeee
LRB I use the butterfly every night, and it has saved me from having to change the bed linens many times. It feels a little weird at first, but I quickly got used to it. I also sleep with a towel under my midsection to further protect my sheets. It's a lot easier to put a new towel down after an incident than it is to change the sheets in the middle of the night! [ more ]
Jan Dollar I haven't. I think it is marketed to women because they are most likely to suffer with this. This is due to the sphincter damage from pregnancy and childbirth. There is even some sphincter damage if you have a c-section! All that pressure I guess... Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Abscess/Fistula-Options besides removal of pouch??
Lisa AnnLisa Ann
SJP3 Easier said than done given how sick you can feel with an abscess, but I'd be patient and get as many opinions as possible before doing anything as drastic as losing your pouch. It took me over 3 years to resolve the issue. I am (trying) to attach a link for Dr Kiran in NYC. If no luck elsewhere you may want to consult with him. http://asp.cumc.columbia.edu/f...118&DepAffil=Surgery [ more ]
BillV Lisa Ann, my thoughts are to make every effort to keep your j-pouch. If it turns out that removal of your pouch is necessary, there are continent ostomy options available, namely the k pouch and the BCIR, that avoid having an external bag and its associated issues. Cleveland Clinic does k pouches and they could provide information on these options. I wish you the best on whatever you decide. Bill [ more ]
Lisa Ann Sorry for not replying sooner. My abscess has flared up again. It seems to be draining. The inscision is still slightly opened so its able to drain some. Thank you both for the information and Jan for posting the link. I'm going to contact The Cleveland Clinic to discuss my issue with a surgeon to see what my options are. I just want the ileostomy to be my last resort if I can avoid it. Its been 7months and three surgeries and I'm just frustrated. Thank you again for the positive feedback. I... [ more ]
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J-Pouch ForumsGeneral Discussion
WARNING......Consideration if buying a tube of Ilex Protectorant Paste
FM Former Member
Former Member http://www.zumaonline.biz What's this...... pay per click ? [ more ]
Yasmine I had a j-pouch for over 13 years and nearly all that time, I had a problem with leakage and skin breakdown. On very bad days, nothing helped the pain and I couldn’t even walk. I tried iLEX and expected it to be just as effective as all the others- meaning not very. I can still remember the first time I applied it. What a liberating feeling! No more excruciating pain! I wasted years not being able to do things before I found iLEX. It has made my life so much happier. http://www.zumaonline.biz [ more ]
Catinthehat I recently ordered more ilex and it came in the toothpaste type tube. Big improvement over old tubes! (in U.S.) [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
Ilex In Short Supply
suebearsuebear
charlottesometimes iLex is now available on prescription in England and Wales. Check out www.ilexhealthproducts.com Such a great product! [ more ]
Natisha1971 Hello, Thank you for the info on the Ilex. This is the only product that my daughter can use. She is now having severe butt burn/breakdown of the skin. Does anyone know where we can purchase Ilex? If anyone has some to sell, I'd be happy to purchase some. Thanks for the help! [ more ]
suebear DRP, I have a tube, only used it once, and will never need it again. If you'd like it, I'll mail it to you. You can PM me your address. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchitis Meds & Probiotics
J JPoucher2014
ks1905 Originally Posted by CTBarrister: Is the thrush worse than the pouchitis? Have you taken nystatin for the thrush? It's really not a "than", it is more of an "in conjunction with". The thrush makes my pouchitis symptoms worse and on top of that it makes me really exhausted almost to the point that I can't function. I tried Nystatin for 10 days cycles a few times and it would always come back after I stopped. I am now on Diflucan continuously while on Flagyl. As soon as I stop the Difucan the... [ more ]
Deanna6 I am now experiencing pouchitis also ( for the first time) and am on Cipro and having the same problem. My pharmacist ( that I love and trust-knows all my issues) told me to not only continue my probiotic but to double up but not take at the time of the cipro. And to also take my multivitamin at a different time as well- couple hours after the cipro. [ more ]
CTBarrister Is the thrush worse than the pouchitis? Have you taken nystatin for the thrush? [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Cyclling, running with J pouch?
S shnwilkins
Former Member ❤️
Handlebar I have been riding on my trainer and on rollers in my basement. I have not ridden out on the road more than 50kms at at time. My take down was in August and there were complications and now in Ontario it has just been too bloody cold to ride outside. I have been trying to get some of my presurgery fitness back. I have the extra complication of not being able to eat sugar. Fruits and vegetables are OK but hydration drinks and gels or bars are not an option. I have tried NUUN tablets and had... [ more ]
JHendrix "Gels" refer to small foil packages of carbohydrate that people carry and eat during endurance sports. They also contain electrolytes and sometimes caffeine. They provide energy during a long cycle, run, etc. (Eg. Gu gels) [ more ]
See all 21 replies...
J-Pouch ForumsGeneral Discussion
Cappuccino and other vices
CatinthehatCatinthehat
skn69 As a K poucher I drink over 2 quarts of coffee a day...1 brewed + a large number of expressos and instant at night...all so that my pouch runs smoothly and without a hitch...they brought me full thermoses 4xs/Day to my hospital room post op pouch creation explaining that it helped to keep things liquid and running. Been 35yrs and I still do it. It works less effectively than in the begining but still does the job. Our pouches are the same (except for the exit) so it should have the same... [ more ]
Catinthehat That's interesting about the coffee, Scott. I'm not really sure how much influence it has on the number of times I have to go, but I don't want to stop to find out. [ more ]
Scott F I haven't managed to persuade myself to abandon most carbohydrates, even though they might be contributing to my antibiotic-dependent pouchitis. Coffee, on the other hand, is something I couldn't tolerate *until* I got my J-pouch. [ more ]
See all 4 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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