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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 ForumsOstomy & Skin
Going to a perm ileo
GinLynGinLyn
jonnakaye I've been suffering with an RV fistula for a few years now. I recently had a temp ileo to allow the area to heal before attempting to repair it and my jpouch. I hate the ileo and want to at least try and save my pouch for now. I'm just trying to decide who to let do it, Beck or Ashburn. The RV fistula is so painful I can barely function most days. I hope that you find relief from your long battle with an RV fistula. You deserve it! 😊 [ more ]
GinLyn Well, in my case, the pouch removal is because literally everything else has failed. The stupid fistulas keep recurring -- and I haven't been able to minimize symptoms and live with them, unfortunately. Repeated infections, pain, not to mention constantly pooing myself, one way or another (so to speak). At this point, having had a pouch advancement which has not healed completely well (I'm mostly continent as long as I only eat white bread, rice, and bananas) combined with the development of... [ more ]
jasmine2 ❤️
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J-Pouch ForumsHelp! Need advice now!
pouch-vaginal fistula - how to repair?
GM Goldie M.
jonnakaye Woodstock69 I have an appt. to see Dr. Beck for a second opinion next month then am scheduled for follow up at cc a week later for an RV fistula and jpouch redo or repair. I have a temp (hopefully) ileo since April. How are you doing since your last repair attempt? [ more ]
rachelraven My surgeon won't even bother with plugs, as they have a high fail rate. My GI said he has a colleague doing clinical trials with plugs coated in stem cells, which are showing more promising results. Fingers crossed! [ more ]
Sarah18 Hi everybody, I just, on Friday, had a synthetic plug put in, to HOPEFULLY heal my pouch-vaginal fistula. The idea is that my body would dissolve the plug, and send "healing" cells to the area to fill in the tract. Pretty sure I saw the plug come out yesterday- pretty bummed. I do have Crohn's and was given a 20-30% chance of this working...but I am more dissapointed than I thought I would be. I was given activity restrictions which I followed, but am wondering if I had taken it even easier... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Issues adjusting to new J-Pouch
C ConnieP
Scott F Good luck! [ more ]
BarbieG Scott F just took my first dose of Questran tonight. I hope it helps. I'm tired of diareaha! My GP thought it was a good medication to try. My cholesterol has dropped to 166 since I started eating oatmeal for breakfast about 7 months ago. I wonder if it will drop more, have to read up if low cholesterol is bad? Will keep you posted on my results. Thank you so much! [ more ]
mitch549 Hang in there. Had the j pouch since 1984. You can do it. [ 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 ForumsHelp! Need advice now!
Inflamed, red skin around, but not on anus
ATXGuyATXGuy
ATXGuy I was able to clear this up with some anti-fungal cream and changing all my underwear over to a "wicking" fabric. Pretty awesome, comfortable stuff, and the most expensive drawers I've ever owned. [ more ]
TE Marie I'd like to add, to all of the good suggestions above, that you sleep with no underwear on. Airing is good either way,Yeast or BB. I also think us girls can have several problems going on at the same time, from personal experience One place the guys have a jump on us is that their male parts are not as close together as ours are. I've had the but crack one and calmoseptine works there for me. I also sleep on a protective pad so don't worry about staining my sheets. [ more ]
CTBarrister In the past I have had a tendency to develop yeast infections in my legpits, this a side effect of taking antibiotics. I essentially eliminated the yeast infections in the past 3 years by drying myself carefully after every shower (I use blow dryer with heat on entire pubic and anal regions), and applying Zeabsorb anti-fungal powder. A few times in the past couple years I felt a twinge of itching and observed a flash of red patch in the legpit. Zeabsorb applied for a few days knocked it... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Suggestions??
J JessGoguen
Jan Dollar Most likely cuffitis and maybe pouchitis too. The bleeding points more to cuffitis, and you can have all the same symptoms as pouchitis. I get them both at the same time. Either one can cause an arthritis flare, if your arthritis is the inflammatory type. My doc will usually prescribe via email communication, and I make an appointment if treatment does not work. But, yeah, you are not wasting your time following up on this. It will likely just get worse if you ignore it. Jan [ 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 ForumsPouchitis
Pouchitis and Small bowl bacteria overgrowth
AllyKatAllyKat
CTBarrister I have found in the past that rotating onto xifaxin helped me conquer yeast infections for the simple reason that xifaxin stays in the gut and is not systemically absorbed. The other antibiotics that are systemically absorbed over time will kill enough bacteria in other parts of your body that the yeast will opportunistically overpopulate in those areas formerly occupied by bacteria. Taking xifaxin allows the bacteria count to recover outside of your gut. I primarily got bad yeast infections... [ more ]
Scott F There are a number of choices for treating yeast infections. If you can find one that works (and you tolerate long term) then maybe it should just be part of your antibiotic regimen? [ more ]
AllyKat Yes, very angry gas, nauseau, burping, xifaxan not cutting it. Started augugmentum again. Not sure how to deal with this yeast situation. I guess it will take a few days to work if it does. If not my options r not looking good. [ 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 ForumsHelp! Need advice now!
doctor stopped omeprazole to zantac & doxycycline
MIKEEYMIKEEY
MIKEEY Hey Scott- Because I have a special day today, I did take augmentim a few hours ago, and believe it or not I am feeling some what better. I took the chance and it did work for me. Thanks Scott. [ more ]
Scott F There are no known drug interactions between Augmentin and Zantac. I have no idea whether switching the antibiotics like this will turn out to be helpful to you. You probably ought to call your doc on Monday. [ more ]
MIKEEY Ally Cat- Thank you so much, I did in fact take the augmentim earlier, and hope I start feeling better. My doctor usually feels I should not take augmentim more then 30 days at a time, he feels I can get immune to it since most other antibiotics really don't help me and I think I have taken every one, go on others a few days usually and go back to augmentim, was not sure if I could go back since I am now on zantac rather the ameprazole. I thank you and bless you for responding to me, hope... [ 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 ForumsPouchitis
What meds to you use?
AllyKatAllyKat
ks1905 I get Thrush (yeast overgrowth) when I take Flagyl for long periods of time, I end up treating the Thrush with Fluconazole. I started rotating antibiotics recently on a 7-10 day basis and I haven't had that issue with yeast overgrowth. Knock on wood [ more ]
AllyKat What do you do for yeast infections? This is a problem for me. All antibiotics give me one. How can I continually be on something? [ more ]
ks1905 I've been rotating combination of antibiotics; Cipro & Augmentin and then Flagyl and Augmentin; I switch every couple of weeks. I don't feel well when I combine Cipro and Flagyl. Flagyl and Cipro on their own don't usually work for me. I haven't used Xifaxan since last year. I'm like Jan, I can go off of the meds and the pouchitis will come back in about 2 weeks. [ 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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J-Pouch ForumsHelp! Need advice now!
Gastroenterologists
Kris10Kris10
CeeeeCeeee I swear by my gastroenterologist. After all, he bore with me through three years of my insistence that he try every medical intervention before I ever thought about surgery. Finally, I agreed and he referred me to a wonderful colorectal surgeon who I still see for monitoring every one or two years. It has been 12 years since my surgery. Actually, I saw my GI doc a few weeks ago when my colorectal surgeon did a scoping at their endoscopy center. So......my gastroenterologist is Donald Abrahm,... [ more ]
Jeffsmom Start with your insurance company! No point seeing someone who does nor participate in your plan. [ more ]
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J-Pouch ForumsPouchitis
Sharp Pain/Nausea - Pouchitis?
KQ Kevin Q
Kevin Q I emailed Dr. Shen's nurse and she said to continue taking the Canasa every day until my symptoms go away 100%. I told her my symptoms were about 90% gone now since I for the most part feel better but seemingly little things can bring them back. They called in an additional Rx to my pharmacy. I haven't picked it up yet, so I'm not sure if they just gave me another 30 days or if they gave me more refills. I hope they gave me more refills so I can just go re-fill it if I have to continue... [ more ]
TE Marie I think you are doing the right thing by calling him. Anucort alone does help many with cuffitis but it didn't help me. Canassa is very expensive. One month of Ancort costs about what just one canasa suppository costs. Maybe that is why Dr. Shen is having you try it too. It will be interesting to hear his plans for you so please let us know after you talk to him. In the mean time, take care and try not to stress about it. [ more ]
Kevin Q Thank you both for the great advice! In my previous appointment, Dr. Shen said to take the Canasa 1x a day for 30 days and if that didn't get rid of it all the way, he also gave me a Rx for a 30 day supply of Anucort to try. The Canasa has definitely made me feel better. Its been about 4 weeks (I took Flagyl for the first 2 weeks as well) and I felt like my symptoms were all gone. Then, like I said, thinking I was for the most part better, I had a few beers and the next day my symptoms had... [ more ]
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J-Pouch ForumsGeneral Discussion
Gas
K Kevinp
Kevinp Thanks, this is very new to me. I had very mild uc and only went a couple times a day but was scoped and they found cancer so total colectomy was recommended and now I'm going 7-10 times a day. Oh well it beats the alternative because I have two kids to see grow up. Thanks for your comments. [ more ]
Jan Dollar It does get better. But after nearly 20 years I never, ever attempt to pass gas without sitting on the toilet. Stool is too loose to be able to have a dry fart. Once things settled down (reducing sugar, fruits, and gas producing foods can help), extreme gas is usually a sign of pouchitis/bacterial overgrowth for me. Antibiotics turn it around. Jan [ more ]
Former Member Gas has always been a huge problem for me. I just can't pass it anymore without passing stool at the same time too. Well sometimes when I'm lying on my back I can get away with it but for the most part, it's one of the penalties I've encountered with my pouch. [ more ]
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J-Pouch ForumsPouchitis
Daily enemas?
TE MarieTE Marie
AllyKat I use my Toto bidet like you almost every time I go. I just feel like it empties my pouch totally. [ more ]
TE Marie Thanks Spooky and Scott. I don't think I have a stricture that I can personally dilate as I use canasa daily which means I use my finger to insert the suppository. Is it considered stricture as one of the "owl's eyes" is inflamed so much it's closed? I thought a stricture was a narrowing caused by scaring? Last year I told my GI that I had to use tap enemas sometimes and he said that was okay as it isn't good for stool to stay in the pouch too long. I didn't talk to him in February as I... [ more ]
Scott F It's important to try to resolve whatever is causing the problem, if possible. Dilations may have to be done more frequently than you'd like, and opiates or loperamide may be exacerbating the problem, even though serving an important purpose. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Fistula....colitis or Crohn's?
AL Alexandra L
rachelraven Yes, if the fistula comes out of the anastomosis, likely from the surgical connection. If not, and you have a history of IBD, highly likely it's an IBD fistula, though there are no guarantees and can just be bad luck. I'm copying and pasting a previous reply of mine: "So here's my two cents, if worth anything, again. I was the poster child for J pouch surgery for 20 years. I had, at the time, a clear cut case of UC pancolitis that eventually, at age 19, did not respond to the modalities of... [ more ]
Scott F Fistulas can certainly occur without Crohn's, particularly if they are associated with a surgical connection (e.g. your pouch anastamosis). OTOH, they are probably a better indicator of Crohn's than anything likely to be found on a biopsy. Rather than fussing over the diagnosis, which is likely to remain uncertain, you might want to focus on things that *might* clear up the fistula. If I developed a fistula I'd try the biologic, because the surgical treatment of fistulas isn't very good at... [ more ]
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J-Pouch ForumsGeneral Discussion
The New Normal
K KOB
Holister80 I just wanted to comment that this post has really helped me. I had my takedown May 1st. Did well and was discharged after 5 days. 7 days later admitted for horrible abdominal pain. Was really sick with ng tube, found an abscess with small fistula. Stayed 8 more days. Had drain for another 3 weeks. So I was told by my ostomy nurse to not rush to the restroom, wait it out as long as I could. That helps stretch the pouch and keep the urgency down. I've never we had an accident or really needed... [ more ]
KOB Hi, Thank you all for the responses. It seems to me I'm sort of where I probably should be at this stage. The Metamucil works for me, the stool isn't firm, but not liquid, I guess the consistency of a loose yogurt (apologies for the graphic description) and certainly always orange. If I leave it to the liquid state, I get burning so keeping it at the looser, but not liquid, consistency works for me. It vacates without issue. Again, thanks for the responses, makes me feel, well, normal [ more ]
rachelraven I, too, have always preferred a looser stool. I tried Metamucil in the beginning, just because they told me to, but a few doses and I was like, nope. Never really needed it. I think overall you sound pretty normal For 1 year. Not eating in the day, IMO, is not doing you any good. My surgeon wanted me to try to defer going, so the pouch could stretch to hold more. Keeping it empty sounds counterintuitive to me, but I suppose you have to pick your poison. My pouch is an old lady comparatively. [ more ]
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J-Pouch ForumsGeneral Discussion
Waste issues (not bodily waste!)
GinLynGinLyn
Spooky I know what you mean. I've always been environmentally conscious, so I was particularly appalled when I had my ostomy, as to the amount of waste I was personally responsible for. Even now with my pouch, I am aware that I probably use 3-4x as much toilet paper as the average individual. I try to be as environmentally responsible as I possibly can be, by purchasing environmentally friendlier brands of toilet paper, and limiting my TP use to as little as possible for me (I do admit to... [ more ]
TE Marie I've had the habit of picking up some of the individual wipes that we, women, use when providing a urine sample. (My husband didn't know why we needed to use them, lol.) They are in a small packet around the size of a condom. I carry a few of them when leaving home. I just ordered 100 of them from Amazon.com for $5. I would think guys would like to carry them too, as they can carry them unnoticed in their pockets For at home use I buy refills for hard cases and have been using... [ more ]
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J-Pouch ForumsGeneral Discussion
BCIR Clinic in Florida
H HK
skn69 Firstly, I am so sorry that you are having so many pouch problems... Next, any surgeon who intimidates you and strikes fear in the hearts of the nurses is not my kind of surgeon...I like the kind that communicates with people, is open minded and does not trash other people's surgeries...I might be strange that way but... Next, both BCIR and k pouches are viable alternatives to non functional j pouches or for people who do not have the option of having a j pouch for various reasons (no anal... [ more ]
HK Thank you for your reply's. My insurance gave me a referrel to see him and he is the one that did the surgery. He is a well respected Surgeon in this area. He has a temper which I have witnessed in the operating room when it was not ready exactly at the time he thought it should be I was a bit taken back at his childish display at the nurses I was laying there on the table fixing to have my J-pouch made.It was a last minute thing my colon had suddenly become perforated in one spot and they... [ more ]
Scott F Any colorectal surgeon who says "they all wind up failing" is one that sounds like trouble. If you can, it might be helpful to see a different doctor - perhaps a gastroenterologist, or perhaps a different surgeon. [ more ]
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J-Pouch ForumsGeneral Discussion
Remicade or cipro
GN Gentle Now
LouJr Originally Posted by TE Marie: My diagnosis is still listed as UC in my medical records - that goes along with what CTB said. They biopsy reports sometimes includes UC because of my cuffitis - that really is UC because it is the part of my rectum that wasn't removed. Pouchitis can be caused by many things. C.diff infections are a type of pouchitis. We got rid of our colons but still have the IBD disease. IMO IBD goes out and searches other parts of our bodies to torture. Absolutely correct. [ more ]
TE Marie My diagnosis is still listed as UC in my medical records - that goes along with what CTB said. They biopsy reports sometimes includes UC because of my cuffitis - that really is UC because it is the part of my rectum that wasn't removed. Pouchitis can be caused by many things. C.diff infections are a type of pouchitis. We got rid of our colons but still have the IBD disease. IMO IBD goes out and searches other parts of our bodies to torture. [ more ]
Gentle Now Yes, that was why. I just took a benedryl pill and did fine. Of course, I had been on remicade before, so we knew it should be good. [ more ]
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J-Pouch ForumsGeneral Discussion
A few post surgery questions.
T Tefuya
Tefuya Thank you both for responding, it's great to know that it was just me having this reaction, as I know it's different for each person. The burning sensation is more of an external burn, usually when my stool is loose, or I go a lot in one day. Ms. Gin I did learn the hard way not to push, made that mistake in the first month and will not do that again! Mr. Steve thank you for the information I see one of my GI doctors tom. so I will ask for some anti-spasmodics, and I will definitely try the... [ more ]
ElmerFudd Tefuya, the healing process does take time, but the spasms / pain you are having are something to discuss with your GI or surgeon. There are some anti-spasmodics you can take that might help. The internal burn is usually worse than the external I think. Not any foods I know of to soothe things, since most of it is caused by digestive acids making there way past your sore anus. Obviously, spicy-hot foods are to be avoided. Also, a PPI (Prilosec) or other acid reducer might help. I take one... [ more ]
GinLyn I seem to recall having that sort of urgency off and on for the first several months, but it did subside. Sometimes I would rush to the bathroom and even push -- which I don't recommend! -- all for nothing. If I am remembering correctly, it was gone by about 8 or 9 months. Everyone is different, of course, but some of it is simply the new set-up getting used to being used and you getting used to using it. As to the burning sensation -- is that internal or do you mean Butt Burn (external)? [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch Advacement
P PDS
PDS TE Marie, Wish you well and thank you ! [ more ]
TE Marie Welcome to the group PDS I hope this is the final surgery you will ever need! You might want to do a search here for past posts about the subject. You can even search on google and it will pull up some of the comments from this site. [ more ]
AllyKat I do not leak. Only at night IF I have pouchitis. Thanks but no I'm not a trouper. Getting real tired of this and afraid of pouch removal. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Totally Discouraged
Mema 1Mema 1
TE Marie I know what you mean kta. My 36 year old daughter, who is more in tune with my health problems than her brother and father, asked me why I was taking so many medications. She thought I'd feel better off of them. I didn't get mad at her but sat down with all of my medications and explained why each one was needed. This discussion started with the little daily pill for my hypothyroidism as it's the one I've needed the longest. At the end of our talk she understood not only why I was taking the... [ more ]
kta I take Celexa for depression as well as an anti-anxiety drug as needed. Before I was on these I was, like TE, imagining ways to die. I was pretty flipped out about taking these as I already take a lot of other meds, but they help me a lot,so....... That is interesting that the intestine has a link to Seratonin. [ more ]
TE Marie Please don't take this in the wrong way Dianne. I was on Cymbalta and it is the only anti-depression like medication I've ever been on that messed with my mind in a bad way. I thought about ways I could die at least 6 times a day. For examples; While driving my car imaging a tire would blow and send it over a cliff and kill me; Standing at the top of the basement stairs thinking I could fall and would then be dead, and so forth. I wasn't suicidal but super scared of dying by many methods. [ more ]
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J-Pouch ForumsGeneral Discussion
Nothing working. Too early to worry?
D DanielR
DanielR Thanks so much for the responses/advice. Hadn't considered pouchitis (hadn't even heard of it), but it's a possibility as I had UC for 25 years before the cancer diagnosis. Certainly not considering anything drastic at this stage, but just wanted to know if what I'm going through is particularly unusual. Seems from the responses that it's not, which I guess is good to know. But it's pretty bloody miserable at the moment. And didn't even get any beneficial side effects from the tincture! [ more ]
SolomonSeal I mostly agree with what's been said. I had my operation on 10 April for ulcerative colitis and despite doing pretty poorly I feel like this needs more time to judge before I reach any decisions as major as removing my jpouch. Look around for advice on the early days and see if anything helps you. If your still suffering, try to get an appointment to check for strictures or pelvic floor dysfunction. If that doesn't work, you can keep giving time for pouch improvement until you feel like... [ more ]
chiromancer Opium should not take time to work but you may be on too low a dose, so depending on how much you are taking you may need more but talk to your doctor about that. Studies do show that radiation treatment for rectal cancer can be problematic for a J pouch, not so chemo ( if given separately). It is pretty early yet and things may well turn around, good luck [ more ]
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J-Pouch ForumsHelp! Need advice now!
Obstruction - still not better.
LH Lisa H
CeeeeCeeee The surgeon who did my proctocolectomy told me, "I am the only one to touch (exam) your J-pouch!". When I decided to have another surgeon do the takedown and switch my care to him (various reasons) I felt such guilt!!!!!! That was about 11 years ago. I still see the "newest" colorectal surgeon for follow up. Strange, huh? [ more ]
Scott F Dr. Bauer was understandably protective of his work. I can't tell if you're still seeing him, Lisa. You do need someone you can turn to if issues crop up. I prefer a gastroenterologist, but others choose to keep seeing their surgeon. As long as the person doing the pouchoscopy understands J-pouch anatomy and J-pouch issues, scopes can reveal a lot of information quite safely. Many doctors and patients advocate periodic scopes to monitor for dysplasia or cancer. This is particularly important... [ more ]
GinLyn A scope might help find out what is going on inside. It could also, if it is an obstruction, be scar tissue choking the bowel from outside, especially if it is at a surgical site. Make sure you have an experienced GI internist looking at your case ASAP, as well as a surgeon familiar with J-pouches. A scope in and of itself shouldn't damage anything, but the inferences drawn and treatment options are a different matter; it is important to have at least one person who knows what they are doing... [ more ]
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J-Pouch ForumsGeneral Discussion
Tomorrow is it: commitment time
GinLynGinLyn
TE Marie I hope this all goes well. I know what you mean about crying. Nothing wrong with crying....close the bedroom or bathroom door and let it out! [ more ]
GinLyn Well, it is definitely official. Fistula must be low and fairly large because she (regular surgeon's partner) could feel it. Yay. Team meeting to discuss; I will speak with my surgeon again on Tuesday for the plan. Thanks for all the good thoughts. Gin [ more ]
jodiloveslife (((hugs))) [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bacteria
crohn's j-pouchercrohn's j-poucher
Jan Dollar This does not sound good. These sorts of chronic infections can lead to sepsis, so I am glad you are trying to be proactive on this. I think consulting with infectious disease is a good strategy. There are many antibiotics that can be effective. Here is a good link with possible antibiotic treatments. You probably have to register to view, but it is free. http://emedicine.medscape.com/.../216845-medication#2 This was long, long before my surgeries, but I had problems with recurring UTIs at... [ more ]
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J-Pouch ForumsGeneral Discussion
White Water Rafting
A Airbailey
Hopeful11 Hey there! I went rafting several times with my pouch, and I had a great time. Load up on the immodium/lomotil and stick to your "low residue staples" that move your gut slowly (peanut butter sandwiches and bananas were always my outdoor adventure "go to"). Put some TP or wet wipes in your bag as well as some antibacterial hand gel. Make sure you hit the bathroom right before you leave, even if you don't have to go. Finally, don't let yourself worry about what would happen if you have to go... [ more ]
1993SPouch I've been! I had to poop in the forest and use a leaf for TP. It was very glamorous. But I had fun and everyone laughed about me pooping because I told them my situation. People are understanding. Looking back I would have had a protein shake for breakfast, skipped lunch and ate a half a Metamucil biscuit before I headed out. Don't let this make you miss out on the fun stuff. [ more ]
ElmerFudd If I were you I would take TP and nothing else. I think you will be surprised at your j-pouch while rafting (unless you have pouchitis or something). When I'm in Colorado hiking and such, I typically have to go less than when I'm at home. I really think it's due to the distractions of the day + the dry air that dehydrates me more than at home. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Accutane with a jpouch?
A aliiien
Spooky Accutane may not directly cause UC but it's got a laundry list of other side effects and potential risk factors, and unless I had severe acne that didn't respond to other treatments I would not even consider it. Just my two cents, though. It's a touchy topic for me, because in my late teens/early twenties I was prescribed Diane-35 which did help my acne but which has since been pulled off the market for being linked to at least 5 deaths in Canada. At the time it was prescribed to me, there... [ more ]
rachelraven Like Jan said, too. An NSAID was my daughter's trigger (diclofenac), but she'd had vague gut signs for a time previous, + sacroilitis. [ more ]
CTBarrister I took Accutane back in the 1980s to treat deep cystic acne. At that point I had already had UC since 1972, and the main concerns about the drug back then was that it could cause severe depression. In my case it worked very well in clearing up acne. It was a several month course on the drug as I recall. I didn't notice any side effects. [ more ]
See all 8 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Vaginal Cystic Lesions and Pouches
RS Rebel Sue
Alexandra L Hi, my story goes somewhat similarly to yours - I've had these painful lesions down there that have been bleeding for two months. I had to see my gyno because GI didn't think it was their area, but then I had an MRI that showed an anal fistula that's causing my lesions (just found that out today) so now it's back to the Gastro because it's IBD related. I was told that these types of things aren't catastrophes so don't get too worked up! Sometimes medications can help and if not surgery can... [ more ]
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J-Pouch ForumsGeneral Discussion
Pain then loud noise
M Mark01
PATRIZIA Yes I do have a few cramps which are painful enough to stop me walking if I am, they are followed by some noisy movements in the pouch. This happens usually when I am delaying going to the loo if needed and feel much better with no cramps once gone.I had my op 15 years ago and not have had any problems with adhesions yet!! [ more ]
rachelraven Was much noisier in the beginning. Now, 24 years post op, its pretty normal unless I get past the comfort stage of needing to go, then things can get noisier. Bet you'll notice this change over the years, too. [ more ]
CeeeeCeeee For me, an empty stomach is the culprit. If I keep some food in me the rumbling is minimal. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Constipation
L LisaT
rachelraven I've had this issue from time to time. Sometimes when I can't pass stuff, my anal anastomoses needs dilated. I self dilate now, so far so good. Are you feeling like you have stuff in there, but miserably are struggling to go? Have you ever had that issue? Sometimes I feel like my bowels just get sluggish, too. I like a looser stool. MoM, about 15mls (I take at night; I'm continent, and usually it'll wake me up in 4 hours to go) works when things go this route. However to stay "loose," I take... [ more ]
Scott F Some folks here like MoM. Others swear by white grape juice. Be careful not to get dehydrated - are you still peeing (and is the urine light-colored)? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Recent Surgery...
Randers.USARanders.USA
Jeffsmom Depending on where you are in Florida, mayo clinic or cleveland clinic. I believe cleveland is in Palm Beach, but I think there is one near Tampa not sure. [ more ]
Scott F Do you have a local gastroenterologist that you trust? He/she might be able to help you navigate this situation, even if mainly by knowing the surgeons in your area. [ more ]
See all 2 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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