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J-Pouch ForumsGeneral Discussion
10 Years!
SpookySpooky
Deanna6 Congrats!! I'm only 9 months out and have had one helluva year! I sure hope that I can be as excited as you are some day! [ more ]
aka KNKLHEAD congrats! I'm colon-less for five, and will celebrate with new and improved CC Dr. Remzi J-pouch at the end of the month. Continued good wishes! [ more ]
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J-Pouch ForumsGeneral Discussion
triathlon
K Keane
Shane199 I agree with Caladbolg!!! This is amazing. Congrats to you guys and I hope the triathlon goes well. I eventually want to ride dirt bike again with my working s-pouch. Struggling with an Ostomy bag at the moment but it'll end one day!! Shane [ more ]
Caladbolg I'm about 10 days out from my second surgery and I've been going through threads to see something like this. I'm in decent shape but in no way really interested in doing a triathlon... However, it is so good to hear that these things can be accomplished with a functioning j-pouch. I hope I can get to the same point you guys are some day. [ more ]
hfc I have done triathlons with my functioning j-pouch, did an iron man last year. Hydration and fueling are important, need to get it right with your training. Do not experiment on race day. Biggest issue as you point out is the swim with an iliostomy and bag. I presume you are doing a sprint or olympic length tri which will take on the order of 2 to 3 hours. For the swim, you will need to secure the bag to your body in some way. If you are wearing a wet suit, the neoprene will keep it in place... [ more ]
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J-Pouch ForumsGeneral Discussion
Advice plz
JS J. Smith
Emmyschmemmy I agree that a thorough site search will provide the best advice. Personally, I had a great hospital stay; I was discharged 24 hours after surgery. Once I got home, the butt burn started and it is HORRIBLE. I am still experiencing it 7 weeks post-takedown. I use Desitin after I go, but it was suggested by someone on here to apply it before I go also, as a protective barrier. I have worn Depends every night since my takedown, but have only actually needed them once for nighttime leakage. They... [ more ]
thumprhare Search the site you will find a lot of good advice. At a minimum bring barrier pastes that you can rotate especially ilex, they may or may not have it. My hospital couldn't 'find' it. Grumble. I needed depends for the first week overnight....it sucked but was better then waking in a pile of crap. I had A LOT of urgency initially and horrible butt burn....hopefully it will be better for you. [ more ]
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J-Pouch ForumsGeneral Discussion
Recurrent hemorrhage due to pouch ulcers.
K kereen
Art Mom Kereen, my daughter is in the hospital for the same condition. Ulcer hemorrhage, transfusions, clipped, cauterized, clamped K-pouch ulcer. Doctor will not prescribe antibiotics, says ulcer is not due to bacteria. Panicked about what plan will be to stay alive and out of hospital. What has been your final course? [ more ]
Anushka ❤️
Scott F If you've been on Celebrex for years I'd guess it's the most likely cause of your ulcer. [ more ]
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J-Pouch ForumsGeneral Discussion
Need New GI Doctor In Connecticut
CTBarristerCTBarrister
Ray C Dear CTBarrister, I had my scope and followup with Proctor and it was non-eventful. As you note, my case is not complicated; I'm Cipro-dependent. Wish I had more to report. Ray [ more ]
CTBarrister Originally Posted by Grieving Old pouch: my experience is that the issues/problems continue with the ileostomy. Plus you also get more scar tissue and reduce/compromise your intestine further. I prefer to have the aggravation in the rear. Someone in my CCFA support group is also going through these issues after a reversal. If it is a Crohn's Disease situation, reversal may not be a panacea that will solve everything. It could just be swapping old problems for new plus injecting scar tissue... [ more ]
Grieving Old pouch I don't even know how to begin to express my anguish over Dr. O leaving. I just started seeing him last year. I was so relieved to finally have found a Gastro who really understood my issues. The horror stories I have collected, from the previous six gastro's who treated me, are to upsetting for me to recount. The doc who is picking up Dr. O's patients in the practice has some very poor reviews out on the internet. I am really not confident about seeing her. I would agree her age is also an... [ more ]
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J-Pouch ForumsGeneral Discussion
Accidents while sleeping
sdlbutterflysdlbutterfly
ladybug4u Lomotil is great help. I'm prescribed 2 4x day as needed. Some days only need 6 and some I need 8 [ more ]
ladybug4u I do not have the problem every night. I have had my pouch since 1990. When I do it is usually caused by pouch itus. In my experiences there are those who have it often and some who rarely do. My Dad was real tall and barely had enough to build and connect his pouch and had hards times holding it so since I was25 when I was diagnosed my fear of that made me force myself to hold it long as I could until I got to where I could control. When night accidents start I call GI he calls in Flagyl... [ more ]
TE Marie My Internist handles my pain management because she sees me at least 4 times a year. My GI at the Mayo Clinic knows I take Norco and we've discussed that it is helping me in 2 ways, with pain and firmer stools. My surgeon knows I take it too. He asked me who was handling my pain management. He's the type that does the surgery and hands his patients back to their GI. I've taken loperamide, generic Imodium, and think the prescription is better than the over the counter because it is powder in... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchitis
SD Snugg D
Snugg D Hi no they haven't said they want to remove them. The adhesions or loops they call them are giving me blockages! No fun at all. Five times admitted last year for this. Low residue diet. Now pouchitis, active ulcerative colitis. Even with j pouch and on pouchoscopy I have mild erythema and anal fissure feels like it's all downhill feeling anxious about it all makes my visits to the bateo even more enduring than it has to be [ more ]
AllyKat Do they want to remove them? I'm having issues with adhesions again as well. [ more ]
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J-Pouch ForumsGeneral Discussion
Questran
Deanna6Deanna6
thumprhare Another CRS, I know actually recommended taking a quarter or half a pack and mixing it with butt paste of your choice to place externally or just in the anal opening. I used it that way immediately post op, and it saved me at some points. I would say like a tsp added to a generous half cup mixed well and put in a clean container. My own own CRS was like,'that's a good idea.' So if you don't want to or don't NEED to take it internally since you have to be aware of other medicine timing around... [ more ]
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J-Pouch ForumsGeneral Discussion
Anxiety
AllyKatAllyKat
Deanna6 I have anxiety after bouts in the bathroom when painful or feeling blocked...you may think this is out there but I don't like to take meds - one reason for colon removal vs Humira for me- but I use essential oils. I diffuse lavender for calming down the end of the day and for sleep, one called peace and calming and apply one directly on my skin called stress away. helps me stay calm most of the time. [ more ]
TE Marie I was on Wellbrutin before my surgeries, for fibromyagia. I'd tried Cymbalta but it caused me to think about dying all the time, not suicide, but dying from car accidents while driving or falling down stairs etc. On the other hand it's helped one of my friends. After the j-pouch surgeries I went on a 2nd antidepressant as was diagnosed with Major Depressive order. My GI at Mayo's said that they can help with our pouch problems as well. I switched last fall to Amitriptyline to control my... [ more ]
Megan O ❤️
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J-Pouch ForumsGeneral Discussion
Flying and jpouch
S Shainy
Jaypea I have had my pouch about 1 1/2 years and have made several trips involving flying for 5-7 hours at a stretch. I always get bad gas and have to get up to the lavatory frequently. It seems that it is the altitude that bothers me, and not the length of the flight. Even a quick 2 hour hop to Las Vegas has me visiting the loo. Happy travels! [ more ]
Shainy I am currently in New York but soon off to Toronto and then flying back to london from there. I think it's about a 6 and a half hour flight [ more ]
hattie I would take the gasx just after I eat my last meal before I fly, that way the gas doesn't start building up. Then, wait about 4 hours and take another one, regardless of how much you eat the next time. Follow the directions on the bottle but I would take the maximum dose suggested on the label, even if I am feeling ok, because by the time I wait to feel gassy and bloated to take it, its too late to be optimally effective. I strive for prevention, rather than trying to alleviate the... [ more ]
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J-Pouch ForumsGeneral Discussion
Imodium causing hiccups?
aka KNKLHEADaka KNKLHEAD
aka KNKLHEAD Ha, I'm ashamed to admit it, Jan! But I do recall really eating a burger really fast when in the car! I think you nailed it. [ more ]
Jan Dollar Extremely doubtful. Hiccups are caused by irritation of the nerves to the diaphragm. I get them every time I take a sip of a very fizzy drink or eat something super spicy. http://www.emedicinehealth.com/hiccups/page2_em.htm Since Imodium acts on the same receptors as opiates, you'd think that taking your opiate pain med would make it worse, but it didn't. Maybe you just ate too fast? Sun spots? Usually, it is just random. But, I sure can sympathize with how exhausting it must have been. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Food choices at 9 months
Deanna6Deanna6
rachelraven 1991 = no scary Internet for me, so like Jan, I just ate, normally, within a month post-op. Used my A&D ointment liberally and trucked along. [ more ]
Shainy I'm at just over 4 months and like jan I have an unrestricted diet. I find my biggest issue is the tendency to eat too much too quickly and then I go more often but in terms of food it's all good in moderation, even spicey foods. I take one immodium a day and that seems to have got rid of the burn. If I stop taking it within a few days I notice my output burns more [ more ]
Jan Dollar I guess I was a dummy post-op. Ignorance is bliss, eh? I was eating pretty much of a regular diet a week or so post-op. I had trials and tribulations, but gradually things improved as my gut adapted. There were very few foods that were consistently bad actors. I figured that if you baby it too long, it gets used to being babied. Could be I am totally off base, but it worked for me. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
VSL3 DS
D Darkhorse
Darkhorse Just had pouch removed. Went to permanent ileo. My last gastroenterologist was at OSU, but he just left that practice. So I don't have a good recommendation......sorry. [ more ]
thumprhare Glad you found a home for it! Where do you get your pouch care? I am new to the area and need a doc that knows pouches. [ more ]
Darkhorse Sorry folks, I have found a home for my excess VSL-3 with someone who needs it. [ more ]
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J-Pouch ForumsGeneral Discussion
Getting back to work and lifting
N nc
nc Mysticobra weight seems to be a struggle for many, as long as your not still losing, things are looking good, take care [ more ]
nc ATXGuy Sounds like you have been through a lot, but remain positive - good to hear! All the best! [ more ]
Mysticobra NC Thanks. It gets better everyday. I have setbacks but they are getting further apart. As for my weight. I am healthy and happy with that. Little more weight wouldn't hurt. Lol. [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone have J Pouch for Rectocele after childbirth?
B BrandyB
Deanna6 I had the colectomy and j pouch done last year and have had a hard time and several procedures with the biggest complaint being constant and severe itching. Couldn't figure it out. Not food. Just now aftER doing a rectal exam after a dilation it comes to my doctor that I may have this problem. I have had 4 vaginal births and am a petite woman. I quickly saw a gyno and am not a candidate for the surgery to repair my vaginal floor but rather need therapy. I guess what I'm saying is I have had... [ more ]
Jan Dollar I agree. I highly doubt that a j-pouch (ileal or colonic) procedure would be offered as a possible solution, since rectocele is an issue with your vaginal wall and pelvic floor, not your rectum, per se. I do have some personal experience, as I had my proctocolectomy and j-pouch procedure about 8 years after my second son was born (vaginally with 4th degree lacerations). The j-pouch did nothing for my rectocele and cystocele, which I was assured by my GYN were birth trauma related. I suppose... [ more ]
Scott F Brandy, I'd be very surprised if a J-pouch were more desirable for you than a state-of-the-art rectocele repair. It can be very difficult to balance complex choices like this, and TV commercials for personal injury attorneys sure don't help. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch removal question
AllyKatAllyKat
TE Marie I discovered that when the biopsy results came back as mild to moderate pouchitis the radiology reports from other tests can came back indicating more inflammation. Looks can be deceiving. Have they done any other testing like the Pouchogram with contrast or a CTscan? [ more ]
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J-Pouch ForumsGeneral Discussion
Remicade or coincidence?
Mema 1Mema 1
Mema 1 Thanks Rachelraven for your input, it's much appreciated, perhaps waiting for the next remicade treatment will bring me hope and help me to feel better. I guess I will have no choice but to wait to see what happens. It's most likely that I will have to go on to an antibiotic which I really hate doing, but at this point, I'd take anything if it would make me feel just a bit better. I'd like to have a few moments of feeling well again. I really don't remember what the feeling is like at this... [ more ]
AllyKat Xifaxan has a patient assist program if you qualify. Im sorry your not well. Do they think going back to a ostomy might help? Im still in the hospital for issues they can't figure out as well. [ more ]
rachelraven The truth with biologics is that it can certainly take more than 2 doses to put things under control. I know with Humira they told us up to 3 months. However, the fact remains not all treatments work for all folks. I'm guessing your doctor will likely tell you to give it more time. I doubt it's "making things worse," but it's probably just not helping, or not helping yet. Perhaps the food choices have been a bit of the culprit, too. Like for me, last Monday, I ate more indiscriminately when... [ more ]
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J-Pouch ForumsGeneral Discussion
Bleeding
R ratwoman75
AllyKat I ate cherries and thought I was passing clots. [ more ]
Scott F I can't tell from your description how much blood you're losing, or the timing of these events. Assuming you're not losing an enormous amount you can monitor it to see if it clears up, persists, or worsens. If you want us to dig deeper, I'd need to know: Do you usually bleed (or occasionally bleed), but smaller amounts? Did "holding it too long" (or whatever you were trying to describe) happen before any bleeding? Did your blackberry binge happen before any bleeding? How many bloody BMs have... [ more ]
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J-Pouch ForumsGeneral Discussion
Ferumoxytol
chili123chili123
Scott F Thanks, Jan. Very nicely put. Sometimes dosing schedules are even more random than you'd expect: the recommended dosing schedule is what they happened to test in the clinical trials, and it just would have taken too much work/time/money to test all possible schedules. They do more testing if it seems necessary to get a better result (e.g. reduced side effects). [ more ]
Jan Dollar Prescribing information is not gospel, and it really is up to the doctor to determine what is in your best interests. Most likely, the recommended dosing schedule is in order to obtain maximum benefit, NOT that altering the schedule would create a risk. The best thing is to ask your doctor if waiting so long for the next dose will increase your risk for a reaction (doubtful) or reduce its effectiveness. Remember, each of us is an individual, and hopefully our providers treat us that way. Jan [ more ]
Scott F People can certainly run into trouble with iron infusions - occasionally very serious trouble. Once you needed an iron infusion you took on that risk. Your doctor didn't pick a particularly risky one, since they all carry risk. It's always better to get iron from your diet if possible, or oral supplements, if possible. When that's not possible, you get an infusion. Yes, it's better to follow the labeled instructions. When that's not possible, you adapt. If your anemia is from malabsorption... [ more ]
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J-Pouch ForumsGeneral Discussion
Abscesses and Fistulas
LORI726LORI726
Scott F Crohn's disease can vary a lot, so no one can predict how yours will go. J-pouch removal doesn't cure Crohn's, of course, but it does remove one target that can be particularly troublesome when Crohn's acts up. Others can talk about their personal experiences, but remember that YMMV (your mileage may vary). I hope things settle down for you! [ more ]
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J-Pouch ForumsGeneral Discussion
Primary Sclerosing Cholangitis
R RLC
Jeffsmom RLC, how are you doing? I see you started this journey last February, we just started in May. You said you were seeing someone at Mass General. That's a huge place. If needed we have a family friend that is a transplant guy at Leahy, just outside of Boston, that's how we were able to get into weill Cornell so quickly. I live n NJ, so NY was an obvious option. hope you are doing well dianne [ more ]
Jeffsmom ❤️
Jeffsmom Raider, hi there. my son has had UC since he was 6 and was just diagnosed with PSC. There are several good sights for PSC, two of which are connected through Facebook. There is also another one started by me, I forget what I called it. I'm so happy to hear that you are doing so well and that your UC is more bothersome than the PSC. If you read through my posts, I am terrified that I'm going to lose my son. I'm not what is worse, me dying first, and him dying without me, or losing hm first... [ more ]
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J-Pouch ForumsGeneral Discussion
blood
U UjohnjC
TE Marie You described the symptoms. They are similar to pouchitis, except I don't think blood is a pouchitis symptom. I let things get so bad I had a stool full of blood before I saw my surgeon. He diagnosed me without doing a flex sig scope and didn't take biopsies. Cuffitis occurs where your pouch is attached to your remaining bit of rectum. He missed the c.diff infection I had as well. I waited to see him for the 1 year check up. He was great immediately after the surgeries and did a super job of... [ more ]
PDS Going through the same problem. It could be ulcers around the staple line but most likely cuffitis. Need to consult your surgeon. Good luck [ more ]
UjohnjC Also before when I had bm it was small droplets now it's more liquid like [ more ]
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J-Pouch ForumsGeneral Discussion
Primary sclerosing cholangitis
JeffsmomJeffsmom
ks1905 Definitely use the Weill Cornell Connect, it's the best way to reach the doctors. It's all in writing, you can take time wording your questions the way that you want to and then you can read the responses. All your son's medical records are there. It's the only way that I communicate with my GI outside of office visits. I usually have a reply within a few hours. https://mychart.med.cornell.edu/mychart/default.asp I remember when Hep-C meant that you would eventually need a liver transplant,... [ more ]
Jan Dollar This is the perfect place for you to vent! Get it off your chest so you don't catch yourself catastrophizing in front of Jeffrey. Remember, there is just as much (if not more) chance that the PSC will not progress for years, so you may as well encourage your thoughts to go there. Hard to do, I know. I think that once you guys are more settled in with the new doctors and can anticipate the next steps, you will be able to relax more and make the best of each day. As you say, live in the... [ more ]
Jeffsmom T, thank you so much for checking in. Everyone here and n the PSC form have been wonderful. I can't thank you enough. Jeff's getting very depressed. He is bing eating again and has gain 30 lbs in the last 6 weeks. I found a therapist for me, but I may have jeff go, but he is getting very stubborn and nasty again, so it's hard to talk to him. I'm trying to keep him a little bit busy, but like I said, his mouth is getting out of control. And when that happens, I look for places to hide. I'm... [ more ]
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J-Pouch ForumsGeneral Discussion
Obstruction 4.5 years post take-down?
B blufnger03
TE Marie It sounds like a partial or total obstruction to me. I have partial ones and rarely throw-up. That's why I am guessing yours was a total obstruction. If I were you I'd stay on soft foods for longer than a day or two. Things get swollen inside during these "episodes". My surgeon told me I would have them from time to time and basically to live with them after he ordered a small bowel study. It's the test you drink barium on a empty stomach for. They x-ray your abdomen to look for kinks,... [ more ]
Spooky Adhesions may form early on, but they can stiffen or toughen over time, leading to obstructions. Scar tissue can also lead to kinks and twists in the bowel, and of course stenosis (or narrowing) and stricture can also occur over time. Again, all of these things can contribute to blockages. I had several partial obstructions last year, although I was 6 years post takedown. Prior to that, I didn't have any issues. I typically will go to the hospital if I'm vomiting or in severe pain, or if the... [ more ]
clz81 As someone who has had an unfortunate number of blockages (assuming most of them due to adhesions since I recently had 8 bands of adhesions removed), mine did not start until 3 years after takedown. I've had them chronically the last couple years. Each of my blockage presented themselves differently. With all of the ones resulting in vomiting, I ended up in the hospital. I've had instances similar to yours (without the vomiting), but I honestly think it was more backup/constipation in my... [ more ]
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J-Pouch ForumsGeneral Discussion
Sugar/Bad Bacteria/Bio-K
slightly_creativeslightly_creative
Isolationary ❤️
Scott F The next step if your antibiotics fail is to find an alternate antibiotic that does the trick. Yes, I'm in the states. I know nothing about the probiotic you've selected. Time-release probiotics might work fine for you; at least they won't do you any harm. The bacteria may be sensitive to stomach acid, so opening them up might render them useless. In any case, it's hard to tell when probiotics are working. [ more ]
slightly_creative Thanks for the response Scott. I haven't tried any other medications as of yet, hoping things calm down over the weekend. If not I will make a call to my doctor. Are you in the States? I'm in Canada and every time I visit VSL's website it says US orders only. Maybe I'll try another pharmacy tomorrow. As for now, do you think I'd be okay opening one of the Bio-K probiotic tablets and drinking that down? I feel like I need to get something beneficial in my system haha. Also, I thought about... [ more ]
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J-Pouch ForumsGeneral Discussion
Small Bowel Obstruction Surgery?
D DianeB
Peti hi, thanks for replying, I am scheduled to have surgery on Aug 4, to remove part of the small bowel, at the old ostomy site. I'm very nervous, but feel if I do nothing, nothing will change. Otherwise I love my jpouch, it's been great. My recent problems started a year and half ago with developing a small bowel bowel bacterial overgrowth, due to dilation of bowel at ostomy site. Hasn't gotten better, so my Doc recommends the SX. Please let me know how you do on Monday with your SX, my Doc... [ more ]
AllyKat Ok all, haev had so many blockages I lost count. I was too stubborn for surgery. I death for 10 years. Spent every 3 months at least in ER. Finally could no longer eat. Had surgery removed about 25 although surgeon said it was not too bad. Had a few minor ones since then, only one hospital visit. But now something is happening again as my system last week started shutting down. Had this 5 years ago, different from the other blockages but could not eat! nauseau, distended, major gas, etc. So,... [ more ]
Lyndse Originally Posted by Peti: hi , have you had the surgery yet? How are you doing? I just had a mr of the pelvis & abdomen , ,y dr. Reccomends to remove a piece of the small bowel where my ostomy hookup was, due to obstruction, want to do it, for I'm uncomfortable every time I eat. & drink , but nervous of having surgery again & ruining what I have. Any advice? Originally Posted by Lyndse: I am actually having this surgery next month. I can't say that I am looking forward to it. I... [ more ]
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J-Pouch ForumsGeneral Discussion
Mechanical problem
AllyKatAllyKat
AllyKat No not on 14. I'm on the cancer floor, only room in hospital. [ more ]
TE Marie I bet it doesn't feel like mild-moderate pouchitis? Do you wonder what sever feels like? Can it get worse? I hate endo scopes but they are better than drinking the barium for small intestine testing. (I don't understand how they can say everything looks fine on those. They do them with with only barium water in the system. Kind of hard to find where the problem is when you eat food which is thicker than water traveling through our intestines.) Are you able to eat anything yet? Good Luck! [ more ]
ks1905 ugh... adhesions can be difficult to find on tests if they are what are causing you the problems. You're in good hands; I hope that they find the cause soon. Are you on the 14th floor? I was there this time last year for my take-down. [ more ]
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J-Pouch ForumsGeneral Discussion
women j pouchers and sex
thumprharethumprhare
thumprhare Skin69....I like the way you think. Lol. [ more ]
skn69 Didn't realise that it was a baby pouch! Yes, way too early to expect the final results...you are still all swollen inside and lots of things are just finding their places and getting comfy in there...So you may find that with time things settle down a touch...give it time and take it slowly (think Tantric sex???)...even gentle stuff can shake things up a bit. Enjoy the 'other stuff' for a while if it is too uncomfortable post-coit for now. Sharon (and congratulations for having to courage... [ more ]
thumprhare Honestly, mentally I was prepared for pain or pressure during...but hadn't read anywhere about after sex pain. I was ecstatic when there was no pain during then about an hour later... kablammy. It was pain like a week post takedown for hours. Thought it was a fluke...then again it happened. It is that deep visceral pain where you get nauseous. It was nothing I would have considered rough, but I remember something Jan wrote way back when about pressure during and thought yippie I am in the... [ more ]
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J-Pouch ForumsGeneral Discussion
how long does it take to get better
jordan18jordan18
rachelraven Are they perianal fistulas? I imagine they are. I have one. Unfortunately, I only have a seton drain. Humira didn't close it (I was hopeful, but oh well). Steroids help mine chill out, but you can't live on steroids forever. *sigh* I will say that just the nature of our loose more acidic stool irritates fistulas. I only go 4-6x a day and none usually at night, and even on my low days, it still can be irritating. What I eat matters too. Too much acidic food = unhappy fistula. Message me if I... [ more ]
Jan Dollar If infliximab was helping, but stopped being effective, there are other biologics to try that may be useful. However, it seems that you have complications upon complications, that lean to a diagnosis other than UC. Have the docs discussed a possible Crohn's diagnosis? May not change your current treatment plan, but it might mean a quicker option of ileostomy. I agree with Scott. Loperamide might help with your symptoms, but it will do little, if anything, for the fistulas. Jan [ more ]
Scott F Loperamide might reduce how often you need to use the bathroom, but unfortunately it won't do anything for the fistulas. The "thickening" might refer to thickening of the bowel wall. Does your doctor believe you have Crohn's Disease? Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Partial Blocks and Irrigation Tube not working anymore
F Fosty
Fosty Hi Scott- have had a stricture in the past which was different from what's happening now. Just seems everything I eat or not gives me cramping and nausea plus some itching in that area. I use the irrigation tube to clear these symptoms which worked well for awhile. Now it seems to be a daily event. Maybe I just back up quickly do today I'm trying a lax and see if things improve. I have an appt with doc on July 7 [ more ]
Scott F Lynn, have these things been properly assessed and failed real treatment? You may have skipped a few steps, but an irrigation tube isn't the same as (for example) treating a stricture. [ more ]
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J-Pouch ForumsGeneral Discussion
IPS
AllyKatAllyKat
TE Marie A substantial number of patients symptomatic after IPAA do not meet the diagnostic criteria for pouchitis. Therefore, we designed a study to assess the etiology in this group of patients. We described a unique subgroup of patients with IPAA who present with pouch symptoms but have normal endoscopic and histologic findings. We considered this subgroup to have irritable pouch syndrome (IPS), which is indicated by a PDAI of <7 and the absence of cuffitis. The etiology of symptoms in IPS is... [ more ]
TE Marie I was diagnosed with IPS before I had pouchitis. I had IBS with UC so it makes since. I think I still have it with my pouchitis. I read a paper written my Dr. Shen and others on this before I had pouchitis. I was being treated with antibiotics which didn't make sense to me. The paper basically said it's a newer diagnosis that is basically like what Jan's saying. [ more ]
Jan Dollar Yes and no. You can have both pouchitis and IPS. So, it is complicated. But, if you do not have inflammation and do not respond to antibiotics, it is likely IPS. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Iron infusion
chili123chili123
DG78 A few days after my first iron infusion of injectafer, I could finally stay awake all day long! After my second infusion a week later, I got a rash that lasted a few days - a reaction to the carbohydrate in the solution they said. Only needed the 2 infusions and I'm feeling so much better. Was even able to cut back on my thyroid medicine because now the blood cells could actually carry the hormones to my cells! Worth a try I'd say. Debbie [ more ]
Scott F The iron won't make you feel better instantly - the body uses it to make hemoglobin, which then gets incorporated into new red blood cells. As this happens, though, you should feel much better. [ more ]
Jaypea I have had several IV iron infusions and luckily did not have an allergic reaction to any of them. They are very easy and all it takes is a little bit of time as it has to be infused slowly. Take a good book or some music. Sit back, relax and be prepared to feel more energetic and refreshed. [ more ]
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J-Pouch ForumsGeneral Discussion
Liver transplant
UH UK husband
UK husband Since the transplant, my wife has had some complications. One of which was CMV pouchitis. The liver she received had the virus and she didn't, after 3 months of valganciclovir after transplant, the hospital forgot to monitor for CMV and she got the virus. I was quite unhappy, as she was admitted to emergency 3 times with various illnesses, all of which we have since learned were from CMV and I asked all the doctors we saw to test for it but no one listened.... In any case, does anyone have... [ more ]
Jan Dollar Oh my! So sorry to hear of this turn of events, but also glad they were able to find a compatible transplant in time. There have been a few members here who had transplants. I think all of them were due to advanced PSC. I have not heard of PSC advancing as rapidly as your wife's case, but perhaps she had it for a long time, undetected, before the hepatitis set in. Anyway, to answer your question, the immune suppressants should not hurt your wife's pouch function. They should actually help... [ more ]
UK husband Ps sorry for the typo [ more ]
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J-Pouch ForumsGeneral Discussion
Cough caused by UC ?
B Banks2015
rachelraven My gut feeling is that your immune system isn't all that hot, leaving you with the susceptibility to pick up stuff, like upper respiratory infections. So doubtful it's "caused" by UC, but may be the result of a screwy immunity. [ more ]
Jeffsmom Got to your primary doctor. You may have bronchitis. I just got over a nice case of it and I was in Florida. Secondly, if you have a cough like that no me will do surgery. It is not save for your lungs and surgeons don't like that. Get checked out before you go into surgery. [ more ]
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J-Pouch ForumsGeneral Discussion
Purchases that helped you after surgery?
W WhiskeyAce
Lisa1972 I bought flushable wipes for cleaning the end of the bag. Mylanta for skin irritation as my loop kept trying to go back inside and the eye of the beast would burn my skin. And a work colleague with a j pouch bought me 3 bags of lolly snakes in to the hospital .. [ more ]
kta You should get an ET nurse in the hospital. Mine introduced herself pretty quickly and helped me learn how to empty as well as change the bag. She was a godsend when I got a weepy rash under the wafer. It caused the wafer to come off and you- know-what to pour down my side. I desperately drove the 30 miles to the hospital where she calmed me down and taught me to deal with the problem. The big thing that helped me after takedown was a bidet. I can't imagine how sore life would be without it... [ more ]
rachelraven Tighter "granny panties" helped me, too, to hold the bag in place. [ more ]
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J-Pouch ForumsGeneral Discussion
Need info on rectal tumor and what happens next
skn69skn69
skn69 Thanks Jan, It is the danger of it being very low down and compromising the sphincter that has the family's knickers in a twist (yes, people today are the same as they were 100 yrs ago...incontinence is still a taboo subject and so are diapers, ostomies etc) On another note...how old is the oldest diagnosis for Crohns? I mean, how late in life can/do they diagnose it? My brother in law is 86 and was hospitalized for what they thought was a really nasty bout of food poisonning (is there ever... [ more ]
Jan Dollar A continent ileostomy would only be an option if there was a total proctocolectomy. If there is no underlying IBD, that would not be required, because most of the colon would remain. Assuming he would be a candidate for a low anterior resection, he might be able to have a colonic j-pouch, which has good function. But, that is assuming sphincter sparing is possible. If the tumor was invasive to other organs, the prostate and bladder may require removal. Distant metastasis paints a whole other... [ more ]
skn69 Thanks Jan, The family considers me the resident expert on the subject but I really am not. I told them that there would probably 1 of 3 possible outcomes assuming that he survives...ostomy, j pouch or k pouch but that I had no idea what they would find once in. I suspect that he waited way too long to get it checked out (probably had bleeding for over a year) and was hoping that it would 'go away'...these things tend to Not go away on their own. It is the old story of it being a... [ more ]
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J-Pouch ForumsGeneral Discussion
Frequent hospitalizations
A Alleyjean
AllyKat Fir 10 years I lived with the same situation. It was a nightmare. Constant blockages. It finally got to a point real bad, I could not eat, so I had adhesion removal surgery and only in 5 years had to go to the hospital twice. [ more ]
Jan Dollar Incomplete emptying would be consistent with constipation type symptoms, which slowly develop. Obstructions, even partial, are more abrupt, with the type of pain you describe and dilated loops of bowel. I imagine your surgeon would like to think it is an emptying issue and it is the right thing to do to rule it out. But your abdominal x-arays don't lie. Adhesions would not show up, but their effect does. Jan [ more ]
Scott F There's nothing faux about a blockage caused by twisted bowel. Why does your surgeon think it's caused by incomplete emptying? Are all of the blockages at the pouch? I'd also wonder about a stricture if so. What has your surgeon suggested you do? Incomplete emptying can be exacerbated by too thick a stool consistency. Are you producing pudding or bricks? Are you on any medications that could contribute to this (e.g. opiates or Imodium)? Are you drinking enough water? [ more ]
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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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