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J-Pouch ForumsHelp! Need advice now!
constant problems
K KellyK
TE Marie I'm in the Des Moines area and I was referred to Mayo as local GI's are generalists and don't know how to handle anything beyond the typical case of pouchitis. If I were you I would try the University of Iowa Hospitals for a 2nd opinion and/or treatment. I'm sorry you are going through all of these problems. [ more ]
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J-Pouch ForumsGeneral Discussion
Thank you
SavannahSavannah
TE Marie I'm glad you are doing better Savanna You are right, this is a great site and group of people. I don't know what I would have done or would do without the support of Jan, Sharon and everyone else. [ more ]
cassiecass Savannah I agree with you. I thank all daily for this site.I may post on certin topics to which I know well . This forum hastaught me more than many know.I know I am not alone . THANK YOU ALL Cassiecass [ more ]
Jan Dollar Savannah, glad you are able to find the support you need here. I think it is important to find empathy even if we cannot provide answers toevery question. Sometimes just knowing that others understand our concerns is more important than anything. I guess our support boils down to cyber hand holding! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Hopkins or Cleveland Clinic?
D Dot2
Dot2 There are a few legitimate hospital ratings - at Hopkins the have a banner that says #1. and I am sure they are in specific fields - as in my family we were interested in true ratings for cancer and gastroenterology. I believe Sloan Kettering for Cancer. I know that location was a decision maker for us. If it were closer I would go to Cleveland Clinic the way they treated families impressed me especially during hard times. Two of the most unique Doctors were at Hopkins one a crisis Doctor... [ more ]
Scott F Hopkins is a fine hospital, about 20 minutes from my house. I know it well and hold it in high regard. It's not the best in the world at everything, though - not by a long shot. Also, the hospital doesn't really treat your illness - the doctor does. I have occasionally considered a trip to Cleveland... [ more ]
Bryan2323 Hopkins is supposed to be the best hospital in the world isn't it? [ more ]
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J-Pouch ForumsGeneral Discussion
Foot and knee pain
L LisaT
Jan Dollar Perhaps you can go with Humira. Remicade is most prone to antibody formation, but I am not sure if lupus reaction will. Preempt use of other biologics. Glad you are following up soon. Jan [ more ]
LisaT Jan, would they try someting else, like Humira?I see my GI doc on Tuesday, so hopefully we can get to the bottom of this. Thank you to everyone who repsoned! [ more ]
Jan Dollar You do know that the biologics can cause drug induced lupus-like syndrome? I do not think you should wait until September to get this sorted out. You need to see a rheumatologist before your next Remicade dose. Talk to your GI or primary doctor to get this expedited. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Crohn's with jpouch-reduced meds to almost nil
M Maddie123
Maddie123 another update: I am going to try a teaspoon of Terramin Clay every day in some water to see if it helps keep the bacteria down. Also I got rid of dairy completely and I'm trying to eat mostly meat and veggies with healthy fats but it's hard to stay away from the carbs Caty: Thanks for the suggestion..I'll have to check it out! Jan: Thanks, I hadn't thought of that. I should do some research on seasonal allergies being a possible cause because it certainly is a mystery to me! Sue: You are... [ more ]
Sue2001 maddie, thank you so much for taking the time to share your story!!! so encouraging. [ more ]
Jan Dollar Maddie, I wonder if springtime is difficult for you because of seasonal allergies expressing in ways you did not expect? Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Some problems with J-Pouch
E ElSur
ElSur I'm sure that it's no pouchitis because I had it checked more than once with a scope and my doctor told me that everything looked just fine. And it's not like I only had it checked when there were no problems anyway, but I also had it checked when this problem occured. But is it right that nobody of you had this kind of symptoms (pain only while holding back the stool in periodic intervalls, incontinence over night after a quite long time with pretty well continence)? [ more ]
Scott F How do you know you cured the pouchitis if the symptoms persisted? Some antibiotics (Flagyl, Xifaxan) simply never worked on my pouchitis. Cipro, doxycycline, and Augmentin have worked pretty well. I know there might be more to the story than you've written, of course. Jan periodically points out that the way the pouch looks seems to sometimes be very different from the severity of pouchitis. [ more ]
ElSur Well, I described the symptoms to my doctor and he took a look at it with the scope, yes. But he didn't find anything concerning the pain, that occurs when I hold back the stool. Furthermore he wasn't able to find a reason for my incontinence. When I had blood in my stool more often I also felt really sick, that was when I got the light pouchitis. But as I told, that is not the problem. I know what was happening there but I don't know what's happening, when I have the pain while holding back... [ more ]
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J-Pouch ForumsGeneral Discussion
just left my surgeon, so lost please help
dgtracydgtracy
dgtracy I'm still going upwards of 15 times a day!! When will this calm down! [ more ]
rachelraven I've had inflammation because of my perianal fistula. It caused things to get narrow, for me to pass the liquid stool, and the thicker stool to get left behind during the worst of it. It was not because of returning UC symptoms for me. I did use enemas during those hard times, before dilations. Now on Canasa every 2-3 nights just "to see" if we can prevent things from happening. I know people are toting the benefits of fiber/Metamucil/Citrucel, etc., but MY experience was that they've ALWAYS... [ more ]
Pluot Inflammation can happen for lots of reasons, not just because of autoimmunity. Tissue that has been recently operated on is always going to be inflamed, like your surgeon said it's post-operative edema aka swelling. It doesn't mean IBD inflammation. [ more ]
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J-Pouch ForumsGeneral Discussion
Second loop iliostomy surgery tomorrow
lovedby2lovedby2
GinLyn I don't know if the loop officially causes dehydration quicker, but I know I personally find staying hydrated with it much more difficult. Water, water, tea, water, tea.... Gin [ more ]
lovedby2 Yeah I remember all that with my first one, it just seems like my memory has decided to push all those initial surgeries away. But it's the loop iliostomy right that causes dehydration quicker? Just not ready for this all again but like you said, 3 months done and reversal done. [ more ]
GinLyn Try just be careful with it at first; low-residue and then go from there. Chew carefully; I find that things I can eat just fine with my pouch can get "caught" a bit more with the loop ileo, but proper chewing solves most of those issues. Maintain your hydration, and get better! Three months isn't so long; here's hoping it goes smoothly. Best, Gin [ more ]
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J-Pouch ForumsHelp! Need advice now!
Having Lots of Trouble
S See_Em_Dee
GinLyn Some spasms can be normal as things adjust; the pouch is getting used to working. Definitely get off the juice & anything with sugar; that makes your output more watery, which increases frequency. Coffee can do that as well. After SEVERAL years adjustment I am back to my morning cappuccino, which I love!, but pretty much drink water, milk, and decaf tea the rest of the day. One glass of fruit juice for something different. But water and tea are your friends... Gin [ more ]
See_Em_Dee Are stomach cramps, internal body pains normal? [ more ]
Ljz I just started taking Hyoscyamine, which is an anti-spasmodic. Dissolves under tongue. I take 4x a day and really help stop that feeling of needing to go associated with spasms. Metamucil cookies great but I use Metamucil after each meal, and have cookies for when I am not at home. Reduced my trips to bathroom significantly. Good luck! My take down was March and I am still watching diet and tweaking things, but so much better! Laurie [ more ]
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J-Pouch ForumsPouchitis
Update on diet to "cure" pouchitis
JillyJilly
Rocket I am going to to try the FODMAP diet myself. I printed a lot of the foods allowed and not allowed. Even some foods I am allowed I cannot eat. But I got to do something. Rocket [ more ]
rachelraven I eliminated and found my triggers with FODMAP. One thing they say is an awful trigger is onions, but I am not bothered at all by them. It is working for me, though. Bloating down to almost nil now. I'm about 95% gluten/wheat free (some days 100%, just depends). That's made a big impact on how I feel. I did not have pouchitis, though, nor was I on abx, I just began to feel really bloated and miserable, and this has helped a lot. [ more ]
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J-Pouch ForumsGeneral Discussion
Humira for Crohns
K KeepFighting(Manny)
boy's mom Thank you. Please keep me posted on what you learn. I will also ask about this. [ more ]
rachelraven I cannot yet. We see GI at the end of the month. We see the director of GI at CHP, and she's pretty in the know, and mentioned this to us at the last appointment, that the NEWEST newest info is this now 6-12 month thing, but I cannot give you literature yet, as we've not seen her this month yet. [ more ]
boy's mom Rachel Raven, my son is on methotextrate with humira since October. I have no heard of this new idea about going off it after 6-12 months. Can you point me to any literature about that or tell me who is doing that research? Thank you. [ more ]
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J-Pouch ForumsGeneral Discussion
no answer, so far
B beckysmom
beckysmom Thanks Te Marie. She is coming home for a month so if she has no other answer from the dr then she could try the antispasmodic and at least I will be around if she gets wiped out by it. She processes meds differently since the neurotoxicity. Thank you both for the LDN information. She had asked the current GI about it but he just said no. I was a little hesitant with this from what I said above with the processing of meds and this works by crossing the blood brain barrier. [ more ]
boy's mom My son did not try LDN but was about too. Ultimately the GI said at that point he was too sick - she was worried it would mask a problem. I don't know enough about it, but it seems it has helped some ( and not others). That same site has peppermint teas in case that would be calming but not hurt on the way out. I hope she gets some relief soon. Long journey.... [ more ]
TE Marie Ischemia is a lack of blood flow and should be looked at shouldn't it? Now that her final paper is finished and all of her course work is done I recommend that she take a longer acting antispasmodic like Dicyclomine (Bentyl) and/or add stool slower like Loperamide (Imodium) and Norco (hydrocodone/tylenol). I too get some blurry vision with the antispasmodic but there are trade offs we have to make sometimes. I'd rather have some blurry vision than take prednisone for instance. Especially... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Prolapsed loop ileostomy ruining my life! Anyone identify?
P Pouchy
Scott F I can't be sure of the timing from your posts, but perhaps that ER visit would change their idea of how benign this is. It makes sense that they'd rather proceed to takedown than tinker with the loop ileo. If you let them know that you're running into serious trouble, maybe that would move you to the front of the line. Just a thought. [ more ]
Pouchy Hi Ikh, I have been waiting for a j-pouch revision. In Toronto we have some of the best people to do the surgery but unfortunately they are very busy and pinning down a date is very difficult. Last time I was supposed to wait just a few months and I only had my surgery 2 years later. As for ileo revision my surgeon says he wants to do the j-pouch revision sometime so it doesn't make sense to have another surgery. Also it seems the con ensues that it's not all that serious...although I'm not... [ more ]
Ikh 1) why didn't you have a reversal, still? 2) did you try to ask for a ileostomy revision? [ more ]
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J-Pouch ForumsGeneral Discussion
How dangerous are those post-op Heprin shots?
skn69skn69
Scott F The heparin is generally safer than the phlebitis. I think it's necessary if you're staying off your feet, but may be completely unnecessary if you're walking around during the day. [ more ]
wsh6745 Well I'm sorry to hear that you had to have surgery but glad it isn't related to pouch complications. Wishing you a speedy and restful recovery. Tell your husband that he should not be enjoying your shots. Those things hurt! Lol.... [ more ]
skn69 Hi Wendy, I had minor surgery on my foot (bunion) last week and they give you 8 days of heprin for any surgical procedure especially with a leg or foot procedure (fear of phlebitis)....I got hubby to give them to me because I honestly hate doing it myself and he is 'enjoying' it...(first time in his life that he has given a shot). I am fine today, slept normally (!) but am very tired. Doing too much as usual. While I was on my protien milkshakes my pouch loved me but since I have been back... [ more ]
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J-Pouch ForumsGeneral Discussion
Will my existing ileostomy appliance be suitable for loop ileostomy.....?
FM Former Member
Ikh nurse will take care in the first day. don't worry. you'll be good with the loop ileo. [ more ]
Former Member Thanks again Shainy. In regard to supplies, Stoma nurse advises that all I need will be provided, especially as I currently use closed pouches, which won't be suitable for the liquidy output of the loop ileostomy. Also advised that convex collar not ideal immediately after surgery, especially as my surgeon normally uses a rod to separate the intestine. [ more ]
Shainy first few weeks you won't be feeling well enough to do day to day activities. during that time I'm sure you will find the right bag. I waited 4 weeks till I did my first run, although I did plenty of walking up till then and even though I get a lot of irritation on the skin around the stoma it doesn't fully leek so I can go out and about without worrying.. [ more ]
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J-Pouch ForumsGeneral Discussion
15 Month Update
P phonix2g
jeane This can be an extremely challenging surgery. Especially for those of us who have post op issues. I still gave issues three years out at times but I am learning what works medication wise etc and also take it one day at a time. Some days I feel pretty normal and almost like someone with a healthy colon would (well almost ) Other days I really do struggle. I just keep hoping the more time that passes the more my body will be at at peace with my jpouch. [ more ]
wsh6745 Thanks for the update. I am just about 10 weeks out from my take down and I have been having problems. This was very encouraging. Thank you. [ more ]
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J-Pouch ForumsGeneral Discussion
sensations and discharge after surgery
allswellallswell
rachelraven I remember having sort of a "pouch spasm" and pressure while I had my loop ileostomy during the waiting phase, and after the "spasm," that was when it would spew some discharge. It tapered off over the four months until takedown. [ more ]
allswell I know your right. I will have to try harder to stay positive. I can be patient with some things believe it or not, but my body or getting better isn't one of them. I know I have a long way to go so I better get more patient. Thanks for all your support. [ more ]
Shainy allswell I am 4 weeks and 2 days post j pouch surgery and I have exactly the same sensations and discharge as you. it started off more liquidy (cloudly/yellow) but now its more solid and is pink/brown. I think it could be a combination of stool passing through the loop ileostomy as well as old stool left in the bowel before surgery. anyway I saw my surgeon yesterday and he wasn't concerned. he did say that the join is very low down. he stuck his finger up into the pouch and he said it felt... [ more ]
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J-Pouch ForumsGeneral Discussion
understanding strictures...confused.
dgtracydgtracy
rachelraven Good luck. Keep us in the loop. [ more ]
dgtracy At my doctor appointment, was checked in office for a stricture but she said it felt great, no issues there, she's concerned about my night sweats and this pain I have across my abdomen so she's sending me for a CT scan, 1 1/2 cups of contrast down...waiting to be taken back. [ more ]
dgtracy I'll try the pills as well. I'm interested to see how tomorrow will be. Going to start it out without Mom and see how it goes. I'm also not bleeding but their is reddish liquid output mostly on tp. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Spasms - please give me an idea
CJBCJB
Ljz Yes, exactly! Just urge and sometimes follows actual output. Prior to using hyoscyamine, I would go to bathroom every time felt spasm- you know, just in case ... But the spasms stop with this pill under tongue. My dose is .125 but my fabulous nurse checked and there is a dose .250 so I know I can double if spasms don't stop. Glad yours are getting better! Laurie [ more ]
Bodoni I have a K-pouch and have experienced spasms a few times. I had no pain. My doctor thought it could be a sign of a partial obstruction and he wanted me to get a CT scan. I finally scheduled the tests and the spasms disappeared the day before the scheduled exam. They have never returned. Oh, I may get a little twitch once in a while, but nothing serious. [ more ]
CJB Thanks Laurie, So are you saying that you have a spasm with no pain? So is it just a feeling of an urge and it feels like something just might 'slip' out? Is there a diagnosis of what causes this? My spasms have been much less frequent lately. But it is still strange. Thanks for your response. C C-jay [ more ]
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J-Pouch ForumsGeneral Discussion
Help! Remicade vs external bag---need advice!
CristolCristol
Olive Oil Do you have Crohns? I had a GI doc that was insistent that I try Remicade and wasn't open to anything else. I was adamantly opposed to it and switched doctors. I've been doing Anti-MAP therapy for a couple of years and am in complete remission. Please, please google this therapy. Anything you choose will come with risks but for me this was a better choice and again for me, I would opt not to do Remicade and would take a permanent ostomy before that. But that is something each individual has... [ more ]
AllyKat I was in your situation 4 years ago. I tried the remi but got so sick on it I had to stop after the second dose. I did get 3 years of remission from it. Now Im no longer a candidate for any bios cause I had a past melanoma.( not from the remi) [ more ]
Semi Colon I've been on remicade for several years and it has worked well. I have Chrohns in the pouch although my diagnosis was always UC. I am told that the risk of cancer is increased when the patient is also taking an immunosuppressant like many UC or Chrohns patients are. I do think about it at every treatment but not in between. [ more ]
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J-Pouch ForumsOstomy & Skin
stoma names
GinLynGinLyn
Halo52208 I named mine Izzy after the one on greys anatomy. Because she was stubborn and wouldn't stop talking. Mine never stops making noises and flowing. So she and I talk a lot. She gets scolded in the shower if she starts spitting. [ more ]
aka KNKLHEAD While I'm not sure I want a body part with this name, I think calling mine "Rush" fits pretty nicely for obvious reasons. [ more ]
skn69 Not only do I talk about him but I also talk to him!!!! We have conversations about fiber, thickness, gas...passionate conversations! But it is habit and makes me seem like I have a split personality (which I must)...no, he does not answer me but he does burp! Sharon [ more ]
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J-Pouch ForumsK-Pouch Korner
BCIR and Kpouch covered 100% by my insurance..
PouchomarxPouchomarx
Jasmine 2 Cleveland Clinic would be my choice, since it's right near you. They are tops in Kock Pouches there. Then you are close if anything should happen and close for appointments and scopes. Good Luck!!!!! I am a Mayo Clinic person myself, love that place and their knowledge and expertise. That is where I go, it's closest to me, and I had my Kock Pouch done there 36 years ago. At the moment, I am dealing with valve issues. So I will be going there to see what the next step is. A scope... [ more ]
vanessavy My BCIR is solid. I go to CC to see doctors there and see Dietz when I thought I had a valve issue due to c,diff. So, follow up can be done there like any other doctor. I have had nothing major happen to have to go to Florida. I did a check up 2 years out but was good to go. Consult with both and go with your gut. What I did. Also, you think it sounds like a long time but trust me, this is a major surgery and you need that care. I did not feel ready to go at the end and it was hard. I went... [ more ]
BillV Pouchomarx, it appears that you have made the first major decision: I do not want the bag. Here are my thoughts on your other concerns: 1.You are fortunate to have the Cleveland Clinic nearby. It is definitely a significant plus as far as follow up care, if needed ,which is best provided by the doctors that did your procedure. Plus, there is no travel involved. 2.If you have not already done so, go to the BCIR program website: www. bcir.com. There you will find a lot of information about the... [ more ]
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J-Pouch ForumsGeneral Discussion
new post op question - dizziness?
allswellallswell
allswell Had my follow up and they said more nutrients, fluid and to start lomotil. I guess I can eat quite a bit now so I am making two hard boiled eggs as we speak. Still having discharge from my butt, but no more spasms. I always have sensations down there, like I can feel my anus and when discharge comes out I fell it on one side but not the other. hmm well my scope is in three weeks. [ more ]
Scott F If your pee is clear and plentiful then it's not dehydration. I suggest being very careful when standing up, until you and your doctor figure this one out. I guess the ocular migraines could be connected, but I'm not sure how. [ more ]
wsh6745 I was extremely dizzy upon standing for the first couple of months after both of my surgeries. It eventually got better and then stopped. I was drinking plenty of fluids but probably wasn't getting the best nutrients for the first months. I wasn't eating much and I'm a vegetarian so probably wasn't getting as much protein as I needed to heal properly. I would literally have to stop and grab a wall or something until the dizziness stopped, if I would have kept on moving - I would have passed... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Distention post op
C coco22
Jaypea If you have not had any output or passed gas in an 8 hour period you need to get yourself to the emergency room. You have the symptoms of a bowel obstruction. Take only clear fluids and see if that makes a difference. I agree that walking will help get things moving. Warmth and massage might be beneficial too. Don't leave this too long however...you need to get checked by a physician. [ more ]
GinLyn It is probably a lot of gas; that is common after takedown. Get up and WALK as much as possible -- don't overdo it, of course, but the walking REALLY helps to get the gas moving. Have you evacuated yet? Make sure you're drinking plenty as well. And, just a tip, a heating pad really helps with the cramping. Hopefully it should pass soon! Gin [ more ]
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J-Pouch ForumsGeneral Discussion
Sacroiliitis?
H hotaru
rachelraven My daughter is 11. Started with "hip" pain at age 5, and had it off and on. Worsened as she got older... NSAIDS worked, but began to quit. At 10, we finally saw a rheumatologist, who watched her for a year... At 11, the pain worsened, spread to both sides, we had an MRI done that showed sacroiliitis and enthesitis. Pushed it a little further, then were waiting for approval for Enbrel when, while on diclofenac, she flared with her first flare of Crohn's colitis. Now the arthritis is linked to... [ more ]
skn69 Hi Hotaru, Welcome to the club...and it is a very big club. I have had it for years...some years it is manageable with nothing but advils and others I am practically handicapped. This has been a bad/good year. I did real damage to it when walking up the hill/stairs (1 mile) to the subway with all of my books/papers for work. I carried most of the weight on 1 side (like all girls; purse, carry all etc in the right hand)and by that night the flare was the worse that it has ever been. Spent a... [ more ]
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J-Pouch ForumsGeneral Discussion
Methotrexate for post pouch arthritis
J jpouchmike
rachelraven My daughter had arthritis symptoms years before the IBD flare. Her bloodwork was never consistent with an arthritis picture. My husband has psoriatic arthritis, and his bloodwork is also not "picture perfect" for his diagnosis, has a few markers +, but most are (-), but based on his whole clinical picture, his rheumatologist treats him with Enbrel, and he's done well. My sister in law also has sero-negative spondylitis, and doesn't have a "classic" lab picture. She is on Humira. Daughter had... [ more ]
Mahshelley I've been having the arthritis too and nothing showed up on my blood work either. I'll have to ask my rheumatologist about this med.. Can't go on any immunosuppressants as I'm due for a redo of my pouch in a month. Sad face. [ more ]
jpouchmike Thanks for the info. having terrible arthritic pains and there's no real explanation...blood work all normal. Doctor says probably related to autoimmune issues of the pouch/gut [ more ]
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J-Pouch ForumsGeneral Discussion
barium enema
Paul HPaul H
jpouchmike just had this done a few weeks ago. you should be able to empty your pouch before leaving the clinic. [ more ]
Bebekspor I didn't have any leakage after mine, which is funny because my butt now leaks every freaking day Good luck! [ more ]
BillV Just as a precaution, you may want to put a pad in your shorts before boarding the train. The clinic doing the exam should be able to provide something suitable and absorbent.I never had this exam when I had my pouch, but did use a pad on account of leakage. Bill [ more ]
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J-Pouch ForumsGeneral Discussion
Perianal abcess 1.5 years after pouch removal?
I ISeeUC
ISeeUC Ooh, lucky me: it looks like Perry's anal fistula has parked itself up my Barbie butt. Gotta make an appt with the surgeon and Google that "seton" thingie. Grrr.... [ more ]
ISeeUC Yeah, the pain got worse last night so I made an appt to see my internist tomorrow morning. Thank you for your replies! [ more ]
Jan Dollar Those perineal wounds from pouch removal are pretty notorious for incomplete healing and recurring infections. So yeah, I don't think it is unreasonable to think another abscess is brewing. If this persists, I'd contact your doctor. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
think I have a hernia
D daviwyat
skn69 Hi Daviwayat, Sounds awfully familiar...could be a hernia. Have you shown it to a doctor? Is it painful? Are you having any problems? If there is no pain, no problem other than a little bulge and if it does not bother you then you can leave it be...if it is causing problems then you should have it checked out. As far as I know (and I may be wrong)hernias to not heal on their own...they need fixing but if it is just a little one they often don't bother. Sharon [ more ]
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J-Pouch ForumsHelp! Need advice now!
Shall I go for mucosectomy or take down (reversal)
C cksind
rachelraven I had a mucosectomy with my initial surgery, and have never had incontinence. I don't know rates of incontinence with one done after pouch creation, though, like later on. I've certainly had some changes off and on. My GI said that yes, there are some people developing new things 15-20 years down the line, but usually not things deemed fully "dysfunctional." I'm 23 years post, and still pouching it pretty well, overall, with a better quality of life than having UC, so... Just depends I... [ more ]
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J-Pouch ForumsPouchitis
Long Term on Cipro
K Kratzer777
CTBarrister I took cipro for a long time and had no side effects but did develop a severe yeast infection and warts simultaneously, which is what happens with high dosages of broad spectrum antibiotics taken over a long period of time. The bacteria in your skin is killed to such an extent that the other microorganisms in your skin, namely fungi and viruses, begin to occupy the empty space formerly occupied by the dead bacteria. This is why I never stay on cipro more than 2 weeks before going off or... [ more ]
Rebe0505 wow,wow i agree with jan do not know why a doctor knowing you have so many bad symptoms would keep you on cipro..first rule for doctor.DO NO HARM..what was he thinking and truthfully(sorry) what were you thinking... thats a long time to have so many terrible side effects without thinking hey something is wrong here..i must stop taking it.. there are so many other antibiotics that would not effect you at all to try.. we all talk about this on the site a lot about all the antibiotics one can... [ more ]
Senor Aguas I alternate between Flagyl, Cipro, and VSL3 on my own schedule. You might try Flagyl even if it hasn't worked in the past. I get a side effect that you haven't mentioned. I tend to get a rash (likely yeast) on my face near my mouth when I'm on antibiotics. I take similar doses of antibiotics when I'm on them. [ more ]
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J-Pouch ForumsPouchitis
Iron Supplements
JulieB71JulieB71
AllyKat When my iron is low I get iv iron? My GI foes not want me on any iron pills. Hate them cause I get migraines after. [ more ]
JulieB71 Rebecca, The iron supplement information I did not find in the b.t.v.c. book but on the website. It had list of legal and illegal foods. And why. You might find it very interesting. http://www.breakingtheviciousc....info/legal/listing/ Thanks for all the input. I have currently stopped taking the iron supplement and have started today another round of antibiotics. This time Cipro at 500mg 2x a day. Had also started taking VSL#3 a couple of days ago. Should I discontinue use of VSL#3 while on... [ more ]
nicole450 Hi Rebecca, I haven't been taking them recently because my iron levels are fine now. The SCD list that I'm on suggests eating liver, which I have a hard time doing, if you're having iron problems. Food is always the first choice in getting nutrients the body needs because it is recognized by the body differently than supplements and is the most bioavailable. Any chance you can eat liver? Many people are able to raise their iron levels significantly by just eating liver regularly. On the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
help
S sawly
skn69 Sawly, The fact that you are posting and asking for help is a great start...it means that you realise what you are doing and are accepting that it is not good for you, your new plumbing and your body. You also realise that there is a serious problem that may have started post op. You do not say if you had done this before your J pouch surgery and medical problems. There is a big difference between chronic, addictive behaviour and a sudden change in behaviour. If it is a sudden change in... [ more ]
Savannah Sawly, I am a clinical psychologist/psychotherapist and I also had UC, a colon rupture, ileostomy, and now a j pouch with complications. I understand coping with PTSD and the temptation to escape from pain, frustration and hopelessness by drifting away with drugs and alcohol. Please don't do this to yourself. It is a temporary escape that is self destructive. You need to find good mental health/drug abuse care to help you manage and cope with your feelings day to day. You can't do this on... [ more ]
TE Marie Please see a mental health professional that treats PTSD and/or substance abuse, depression and anxiety. I saw a wonderful therapist after my surgeries that treated me using EMDR therapy for PTSD and it worked well. It probably wasn't just the surgeries that caused whatever your problems are but the combination of multiple events in your life. You can't do this alone so please seek help. You might want to do a search on this site as there are past discussions about PTSD. [ more ]
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J-Pouch ForumsGeneral Discussion
Dilation?
J JDShaw
Halo52208 Can you have anesthesia if you want. I don't think I could handle anymore pain down there. Hopefully I never have to have one done. [ more ]
mgmt10 I had an anal stricture develop about a month after my takedown. I had a total of 5 in office digital dilations spread out over about 6 months. No sedation....very quick but painful. It's been fine ever since....never re-formed. It happens to some people and never for others so you just never know. [ more ]
wsh6745 I have had it done twice, both times under local anesthesia while they were doing a pouch endoscopy to check things out. I couldn't feel a thing. I was a little sore for BM's for about one day each time but that is all and it really seemed to make passing stool easier each time. What are your concerns? I don't think everyone has to have this done, only if you have narrowing due to scar tissue. I hope all goes well with your new pouch, what happened that you are getting that done? Thanks, Wendy [ more ]
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J-Pouch ForumsGeneral Discussion
if you had a mucosectomy can you enlighten me?
dgtracydgtracy
rachelraven I suppose I wasn't clear. My mucosectomy was part of my original surgery. [ more ]
dgtracy Did your pouch behave differently after? I don't really feel like I'm going that much but feel as if there is stool that's not emptying, I was checked for a stricture about 1 week and half ago and at the time there wasn't one. [ more ]
rachelraven I was 19, and had the benefit of a summer off... May to September. It totally gets better. I did have a mucosectomy. [ more ]
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J-Pouch ForumsGeneral Discussion
Night time incontinence
L Looleyjule
jeane You can try fiber or Metamucil but I also agree you should be evaluated. Chronic burn and bleeding are not normal and you could have cuffitis which can cause incontinence as can pouchitis. [ more ]
Mark N I meant I take dirreaha MEDICINE at bedtime, of course [ more ]
Mark N I used to have occasional incontinence issues like you and still do buy rarely. I try to eat dinner, my largest meal of the day, by 4:00PM, well ahead of bedtime. We used to eat at 6:30 or so with a 10:00PM bedtime. I also try to keep that meal light and then I take diarreaha (however you spell it!) before bedtime. On vacations we3 still eat late and eat too much so I have problems so I take some of those "adult" protective "panties" along on vacation ... Just in case! [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
adjustment period?
J JHendrix
TE Marie Don't let our posts here about problems scare you too much. This is a support group and people come here with problems. Most people come before and after surgery for help and when they are recovered we stop hearing from them. [ more ]
kta I was very sick going into the surgery, had a three step with one extra surgery for an abscess in between surgeries 2 and 3. It took a year to feel my old self. [ more ]
Mysticobra I am seven months into it and my improvements are slow but I had problems after my first surgery which was laproscopic to where my second they had to open me up and find a blockage they could not see any other way to my third opening where I was bleeding internally. I believe that without those problems and the emergency take down I would have been fine. But that is not the way things go with me. I wish it would have been a couple weeks and back to work but it didn't happen. Richard. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Butt pain...dr no help
H Halo52208
TE Marie Since you now have a fever I suggest you call the doctor's office. There will be a doctor on call over the weekend that should be able to call your doctor or call you in a prescription so you can start it now without waiting for an appointment. I suppose you don't have any Flagyl and/or Cipro hanging around your house? [ more ]
Halo52208 I think I do have pouchitis I'm running a low grade fever now and it does hurt to go down there. I get to call mon to make my appt with the dr. Unless they just call in antibiotics. [ more ]
TE Marie I suggest you get a mirror and look there to see if it's red/inflamed on the outside first. You might have butt burn that can be taken care of with calmoseptine cream like destin or other baby but creams. Does soaking your rear end in a shallow bath help? I know it's hard navigating around your stoma etc. If that's not the case call back and insist on an appointment. All doctors have acute appointments, or for patients that need to be seen "today" or right away. If it's a surgery day I don't... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Incontinence Briefs
N nola
chiromancer Cotton ball will help. Don't deeply insert, just snug against the opening. I was surprised that it wasn't very noticeable, worth a try with your minor incontinence. [ more ]
nola Well, it probably is generally fecal matter but it's slight enough to not be seen as brown I guess I should say. I do have a fistula so that causes some clear. but definitely the main problem is preventing some matter from leaking out, especially when I've been sitting for a while. Anyone have any recommendations? It definitely is worse when I feel like I haven't been relieved so obviously going as much as I can helps, but the problem is I cant always go when I need to. but for light... [ more ]
Jan Dollar This is indeed a puzzle. Any anal leakage from the pouch I would expect to be fecal matter. I cannot fathom it to be anorectal without it being fecal, unless there is something else going on. Truly clear secretions would most likely be sweat or something not from your pouch. Have you been checked for draining cysts, abscess, fissure, or hemorrhoids? Do you have any pain, itching or other symptoms? Bottom line, this is NOT normal! Jan [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
possible to have stools too firm?
dgtracydgtracy
dgtracy I don't have any blood but I just don't feel like I'm emptying alot. Just had a mucosectomy 2 weeks ago and I don't think there's a stricture because I can empty fine sometimes. I figure a stricture would be consistent [ more ]
Ikh I'm the same as you, and trying to find a solution to straining, as it probably causes some blooding (not sure if it's caused by it but in general I feel good), and as I bleed I'm a bit anemic. [ more ]
TE Marie Congratulations on your surgery! I'm envious as I have chronic cuffitis. I've had stools get too firm when using too many Loperamide and it isn't good as I've pushed before I are realized it. I don't think pushing a little bit would do harm but I've never had the delicate surgery you've had. If I were you I'd keep my stools looser so there wouldn't be any accidental pushing. Maybe you should call your doctor if you are feeling uneasy about it. [ more ]
See all 3 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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