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J-Pouch ForumsWomen's Health & Pregnancy
scope and pregnancy?
stellstell
Clicky I had a scope at 6 months and even laser treatment but I had very severe bleeding. They offered me sedation but I refused and all was fine! Not unless desperate I would say. [ more ]
stell Hi Kathy, guess you will be seeing me more here again. So surprised to see you, I was looking around and didnt recognize anyone's name except Jan of course. Yes Jaime is a flight attendent now for Jet Blue here on the east coast. She left Alaska Air to return home. Glad to see old friends, you too Jan. [ more ]
Jan Dollar Even when I still had my colon, they would not scope during pregnancy, not even a sigmoidoscopy without sedation. I was having UC flares during pregnancy too, but they just treated the disease without invasive scopes. Unless there is an urgent need I see no point in the risk. What GI is going to want to assume the risk of potentially disrupting a pregnancy just for a looky-loo? No doctor with brain cells to rub together. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Scars / Plastic Surgery
fqfq
skn69 Hi FQ, Congratulations... I think that it is great that you decided to get the abdomen fixed and that you are pleased with the outcome... Let us know how the healing progresses... Sharon [ more ]
fq hi everyone just wanted to give an update. my bandages are off and i love my new scars! they were revised much better than i even thought possible. my midline incision used to be wide and have staple marks. now it is a thin line and no staple marks. ostomy site is a very thin horizontal line and no caving in or crater look. the surgeon did a good job. my tummy feels really tight though and i wonder if i have more adhesions again? well, it's done so i guess that's that. overall, i feel much... [ more ]
Subsky it's funny, i feel the exact opposite about my incision scars. i wear my scars like a badge of honour, reminding me of what I have been through and came out stronger afterwards. natural tattoos in my mind. [ more ]
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J-Pouch ForumsGeneral Discussion
antidepressant GI side effects
P pookie
Av8erchic I experienced diarrhea (previous to my UC diagnosis, so obviously before the j pouch) on the Zoloft and changed to Wellbutrin. I am currently taking Prozac, with no issues, either (the change on this one was due to abnormal liver enzymes--the doctor thought that medicine may be the case, which it wasn't). I didn't have the same side effects with that one. I would make sure to discuss the issue with your doctor, they should be willing to work with you on finding one that works for you,... [ more ]
CeeeeCeeee I was prescribed Cymbalta for severe nerve pain. This medication, apparently, has been used as an anti-depressant. Well, even at very low doses, Cymbalta gave me nausea which had me feeling the need to throw up even when my stomach was empty. I stuck with the medication for several months but decided I'd rather not go through this nausea on a daily basis. So, I stopped taking it. No more nausea. [ more ]
Goodspeede Hi Pookie- I have had a hard time finding the right antidepressant before too. The SSRI's (like Zoloft) did not work for me. They primarily deal with serotonin. I currently take Wellbutrin which is a different kind of class on antidepressants that work with Dopamine and Norepinephrine. I am not sure if the side effects have to deal with which neurotransmitter the med works with, but the serotonin ones make me like a zombie who poops a lot! Wellbutin has been great, the only side effect I get... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Want a baby, but scared
K Kaitf
rachelraven My first go round to try to get pregnant didn't take long... started trying in January, pregnant by September (I was 30 years old). I had a scheduled C section, approved by my surgeon. I know women have delivered vaginally with a J pouch, but I was just too nervous about that creating any continence issues, or tearing into that area, or whatever. I had no issues with that. I read a study that said that 52% of women after J pouch surgery have issues with conceiving. A year after my daughter,... [ more ]
clz81 Your body should handle pregnancy just fine. Some women have difficulty getting pregnant, but your pregnancy shouldn't be all that different than someone with a colon. Just a few more bathroom trips especially in the 3rd trimester. If you are ready, I would suggest starting earlier. It could take you awhile, and women's fertility take a drop at 29-30 and then again mid 30s. Good luck to you! [ more ]
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J-Pouch ForumsGeneral Discussion
marijuana study...
CatajaCataja
Pouchomarx You figure with the Cleveland Clinic being one of the biggest and best hospitals in the world, that marijuana would be tried there. I live right down the street and would love for this to happen. Especially of how strict they are with giving pain meds now, why not go this route? [ more ]
TE Marie Ingesting sounds better than smoking. Even better if I could measure a certain amount in my daily fruit smoothie. [ more ]
killcolitis Smoking is the most ineffective method if your aim is therapeutic. Oil, eating and even juicing fresh leaves are more promising. [ more ]
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J-Pouch ForumsGeneral Discussion
Second try at Reversal
A AimeezWorld
itsnotsherry My first try failed as well, due to a leak. My doctor could not find where it was coming from, even after several pouchagrams. He finally tried injecting hydrogen peroxide and found it in a place one rarely sees one. He did a surgical repair, and my second take down was successful. I won't go into the rest of it, but at least the second one worked! Good luck! [ more ]
AimeezWorld thank you for all the encouragement and private messsage. Ill let you know what happens [ more ]
MGN I sent you a private message. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Recurrent UTI
M meghspd
desisn00ps Hi, I had been having the same problem for the last year and now I'm being told that I may have a pouch-bladder fistula. You may want to see a urologist, get a cystoscopy and rule out issues like IC or a fistula before trying to get pregnant. [ more ]
meghspd Thank you all for replying .. Its only after we have intercourse I get UTIs not other wise And doc had asked me to pee after we do it so It pushes all the bacteria That may have got in . But for conceiving usually its recommended the one Doesnot get up immediately ..so I am a lil confused what Shld I follow. Also I am not taking any antibiotics yet ..my appoinment in next week In the mean time I have to go for a wisdom toothe extraction on tuesday And since I have undergone total hip... [ more ]
vanessavy usually people misdiagnose UTIS. I was for years, I was finally diagnosed with Interstitial Cystitis 3 years ago. I would make sure that you do not have IC, it is actually pretty common to have. [ more ]
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J-Pouch ForumsGeneral Discussion
New and confused!
C cautious_cg
JeffDC It takes quite a while before your body figures out how to handle what just happened to it. Yes, there will be bad days, I had a lot of them, but over time, you will have more good days than bad. But it can take a long time before it happens. Having patience and faith will both help, as will having a sense of humor. [ more ]
Breezie Your post could have been written by me and many others here. The first year with my j-pouch was full of problems, pouchitis, horrible butt burn, you name it. Sleep was out of the question and I was at the end of my rope -- is this what life is going to be like? Do my doctors really expect me to be able to live, work, etc., like this?! Fast forward -- my pouch settled down and life became very normal again. I have had my pouch for 14 years and I rarely think about it anymore. I don't have to... [ more ]
Scott F Cautious- Some things will get better simply as your recovery progresses. Other things will improve as you try things, pay attention to the results, and patiently learn what works for you. I do recommend you try something to manage that diarrhea - at least psyllium. [ more ]
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J-Pouch ForumsGeneral Discussion
Interview Not Possible
D Dot2
Jan Dollar I think it is pretty common to shrink the tumor with chemo or radiation before surgery. You are less likely to disrupt the tumor and allow the cancer cells to spread to distant sites that way. The goal is to improve ling term survival rates, not cut it out as fast as you can. Doing surgery too soon can increase her risk. It can be like opening a can of worms. They have learned a lot in the ast couple of decades and the chemo treatments are better. Jan [ more ]
TE Marie I know you are searching for help for your daughter but there are not too many of us on here that have had cancer. [ more ]
Dot2 While I sat under the hair dryer today where I do my greatest thinking - it came to me - why not go to the hospital where they found the cancer - she left before all the results were in from the lab - I wonder what would have happened if she hadn't come home -they were giving her a anti-biotic drip til just before she left - she is on a small annuity and insurance - [ more ]
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J-Pouch ForumsGeneral Discussion
butt burn from out of no where
Holly MHolly M
TE Marie Good. I hate it when I can't figure out what causes something so I can avoid it the next time but that's the way it is. Just something else we have to live with. [ more ]
Holly M No, I do put a tad of pepper on some of my foods but nothing more than I ever had. If anything I had eaten less of everything the last few days because I knew I was going to have alot of outdoor time on Thurs. at the Oceanfront at VA Beach and didn't want alot of bathroom visits. I am feeling better this morning, so hoping things have settled down. [ more ]
TE Marie What did you eat yesterday? Any extra black pepper? [ more ]
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J-Pouch ForumsGeneral Discussion
I've had UC for 18 years. Last colonoscopy showed
M Mamacat80
Scott F Since others have done a nice job with the LGD question, I'll take a stab at the one- vs. two-stage procedure. Most folks seem to get a two (sometimes three) stage procedure, often dictated by the condition of the colon at surgery. I had a single stage procedure, available since I was in reasonably good health at the time. My surgeon warned me that one-stage folks tend to spend as much total time in the hospital as two-stage folks. In my case the process included a truly miserable 10-day... [ more ]
Jan Dollar Thanks Rocket, but I doubt I am the most knowledgeable here. I just know where to find stuff, and being a nurse I just naturally want to stay up to date. Plus, I like to pop in frequently and blab a lot. While I never had any positive biopsies for LGD, I had planned on having a prophylactic colectomy after 23+ years of a pancolitis diagnosis. Even though I was in remission most of the time, the cancer risk is the same, and pancolitis put me in the top tier. I had oodles of pseudopolyps,... [ more ]
Pouchomarx mine was 2 surgeries laproscopically. I have had issues since my surgeries. Ulceritive colitis would creep up on me a few times a year but it was not horrible. My surgeries and complications took its toll on my family and I think its part of the reason I am divorced today. such is life [ more ]
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J-Pouch ForumsGeneral Discussion
Hernia????
I itsnotsherry
mxc508 I had an incisive hernia about 3 years after my colectomy - it was repaired without mesh and never bothered me again (I am a carpenter by trade, so heavy lifting is all too familiar). I am on my second parastomal hernia - repaired once last year - surgeon estimated a good 5-7 years, it lasted 6 months. I'm having the j-pouch done next week and the surgeon promises me some good mesh will go in at the take down to minimize future hernias. Best of luck! - Mark [ more ]
Jan Dollar Mine was not laparoscopic, was an open midline repair, and I was fine in a couple of days. But, I did have mesh, so it is a stronger repair. Still, sitting at a desk is not very strenuous, and it depends how much you want to return to work. Still, you just don't know how your recovery will go. But, these things don't generally involve periods without eating and that sort of thing. It's generally pretty superfiscial (although my surgeon went in and took a peek at my pouch, just to enjoy his... [ more ]
skn69 I'd say that it depends on the type of surgery and the surgeon...if it is done externally with an open suture line then you need to take a bit longer off and avoid any strenuous activity for a while (4-6 weeks) but if it is done through laporoscopy you should be ok in a couple of days and good to go by the weekend...that said, you are not supposed to be gardening, mountain climbing or repainting the ceilings in the same week as the repair...give yourself some time off...(then paint the... [ more ]
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J-Pouch ForumsGeneral Discussion
Post Takedown Pain - Will This Go Away?
A Amythyst
Laurie K I am so happy for you truly! That is an amazing story. He deserves an easy ride this time...and I'd say 3-4 times is amazing! I still go 8-10, but it's not a big deal at all!!!! To answer your question....I had a blood clot in my abdomen. Had HORRIBLE pain (which, when I initially read your post, I thought of). But...it got worse, not better...brought myself to the ER (thank g-d) and found out I had it. Could have died I guess. I was 89lbs and emaciated by the end of it all. My adrenal... [ more ]
Amythyst Thanks Laurie! He is actually great now... no pain at all now and going about 3-4 times a day. What complications did you have? That certainly doesn't sound fun. His first surgery was a horrible nightmare because he almost died from septic shock. We now know that one of his staples came loose on his j-pouch and I guess a bunch of intestinal stuff leaked into his abdomen. He stayed in the hospital for almost a month and then I had to give him constant home care for his drains and PICC line... [ more ]
Laurie K I'm so glad he is doing well. I also had all that pain, and noise. It was unbearable at times. I actually had some complications that left me unable to gain weight, so I had to drink all the weight gain drinks, which made the gas 10xs worse. I know this sounds weird, but if he ever can't pass it and it hurts..tell him to lay on his back and put his legs in the air (like he's doing a bike pedaling exercise). It has saved my life at times (I can't believe I'm saying that). It truly works, and... [ more ]
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J-Pouch ForumsHelp! Need advice now!
highly recommended colo-rectal surgeon in Atlanta
N Nat
Dot2 When my GI told her she should see a colo/rectal Doctor which I have never heard of in all of these GI years - I went to the hospitals - went down their staffs looking for colo/rectal - fortunately found one in DC - and since she was in so much pain for so long - off she went for a week of getting rid of an infection - but also the discovery of colon cancer (no colon) but in lining - [ more ]
Dot2 My GI told me my daughter needed to see a colo/rectal Doctor and gave us the name of a few. Has your GI Doctor done that?? - The Doctor who did my daughters original JPouch at Hopkins but has moved 19 hours away - now she has to decide to go back to him for removal of a mass, or go locally to where they want to do chemo to reduce size - - I sure wish she would ask questions ---- [ more ]
JeffDC I recommend Jay Singh at Piedmont in Buckhead. Excellent doc. [ more ]
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J-Pouch ForumsGeneral Discussion
Pre operation J pouch help!
A Anthonyv
Laurie K Hi Anthony, As someone already posted...there should be an ostomy nurse at the hospital, who will meet with you prior and give you a video, pamphlets, etc. That is what happened with me. Honestly, with all of that...you are never totally prepared. It's something new, different, and you may have lots of questions after the fact. They also have nurses that will come to your home. I'm so sorry you have gone through this for so long. This takes time...it is a long total recovery, but WELL worth... [ more ]
spouch Hi Antony. John from NSW. If you can try and contact the Stoma nurse at the hospital where you are having your surgery and they will be able to help you when you have your loop ileostomy. I have what is known as an Spouch,it uses 3 loops of Ileum where a J pouch uses 2 but the idea is the same. I had mine done in Sydney in 1981, one of the first in Australia and so far so good. For your info we now have a pouch support group in Australia and I think we have people in Adelaide. I hope it goes... [ more ]
TE Marie Do You know if you are having your surgery done open or laproscopically? Lapro would be the best there's less scaring and recovery time. Are they going to do a procedure where they scraped the mucosa off the 2cm of rectum they leave at the rectal stump? I hope they do this before they attach your j-pouch to the rectal stump. There is a chance, if they don't do that of getting UC in the 2 cm of rectum left behind, they call it cuffitis. It's not too big of an area but hurts like hell if you... [ more ]
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J-Pouch ForumsGeneral Discussion
lower back pain since jpouch
S Stone
Laurie K OK...so I feel a little silly for asking, but have you gone to PT for it? It's been 6 years since my surgery, but I remember for months and months after I was hunched over with back pain. No one knew what it was. I basically told my general doctor he better write me a script, because I definitely needed to do something. I could barely walk. Well...within 2 weeks, I was a different person. I'd ditch the pain meds and try that for a while, personally. Hope this helps! [ more ]
Jan Dollar If your primary diagnosis is UC, and this low back pain/upper buttock pain has been going on for 3 months or more, it could be enteropathic arthritis, which is a type of spondyloarthropathy. NSAIDs work well for many people (I used them for years), but for many of us with IBD, they are a curse along with being a blessing, as they can cause pouchitis. Careful evaluation by a rheumatologist is key to getting the right treatment. Narcotics are useful for pain (I take small amounts daily), but... [ more ]
lovedby2 I'm jumping on the band wagon with this as well... My lower back and sacrum hurt most mornings and evenings. I was in a narco, then weaned to tramadol, and now all I have to take for it is liquid gel Aleve. Some days I really need something stronger and will be mentioning this to my Dr next visit. As for narco stopping the diahrea, yes it does and at night it's wonderful... The reason being, that it slows digestion and can cause uncomfortable constipation feeling if taken too much. [ more ]
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J-Pouch ForumsGeneral Discussion
How does Imodium actually work?
P Pluot
Pluot Thanks so much Jan, this is really helpful. Somehow I knew you would have the answers! [ more ]
Jan Dollar Imodium works exactly the same as morphine and other opiates, without the analgesia. It works through the opiate receptor in the gut. Everything I have read about it indicates that tolerance and dependence do not occur with Imodium. As you have noticed, we each have our own sensitivity to it, so you are right to adjust according to your own needs. There is nothing to indicate that it interferes with adaptation in any way. The doctors who prefer you not take bowel slowers at first probably... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Daughter Does Not Want To Go To Local Dr
D Dot2
Jan Dollar Dot, is there any way your daughter can post here herself? It is difficult to answer the questions you ask because there is not enough information. I know you are hurting for her. I don't about the others, but I'm not really sure what you are asking. Why does she think she would not get the right medications? If she is starting chemo it is important that she have a good rapport with her oncologist. Jan [ more ]
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J-Pouch ForumsK-Pouch Korner
Help - Leak?
A AlexanderC
skn69 Dixie, If we are talking about the same thing then it isn't a tracea tube...it is a wire (about 2-4mm thick)and is semi-stiff but flexible...it is plastic covered (by some very slippery material)and you snake it along the canal to the valve until you pass it through... I don't know if you remember but when my pouch/valve were at their worse between 2007-2009 I had a really bad problem and could no longer intubate on my own...I ended up in ER a couple of times in both Toronto and Paris and... [ more ]
AlexanderC I don't know the exact size of mine, it's more than 30cm long though. The end is curved but that's not an issue. You just straighten it out and slot the catheter over. I will look up the length and details of mine when I get home and post it later or tomorrow. [ more ]
Dixie from Saskatchewan Hi Alexander, I just took a look at the trachea tube link & might order one to have on hand for an emergency. What size do you use - small, medium or large? I notice one end is curved. I assume you put the straight end in, but as the other end is curved, how does our regular tube go over the curved end? (Sorry - stupid question!). - Dixie [ more ]
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J-Pouch ForumsGeneral Discussion
VSL3 side effects?
M mgiamartino
Jan Dollar Roughly, 4 capsules are equal to one regular VSL#3 packet. 8 capsules are equal to one VSL#3-DS packet. Capsules have 112.5 billion bacteria. Regular packets have 450 billuon bacteria. DS packets have 900 billion bacteria. Jan [ more ]
mgiamartino i actually take the pills--is one packet equal to one capsule? i know $120 isn't the end of the world but it's an added expense that I would like to avoid if possible...THANK YOU everyone for your input, Michelle [ more ]
TE Marie $120 is cheap for a months of 4 packets of DS. The cost for 40 packets of DS is around $180 for me until we meet our high deductible. I take one a day so that's 40 days worth. The directions say 1/2 to 4 packets per day. If you are talking about 4 packet of the regular strength it would be 2 packets of the double strength that is the only one you can get through prescription. I hope it works for you! It is better than taking antibiotics. [ more ]
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J-Pouch ForumsGeneral Discussion
Who has had a fecal transplant?
rachelravenrachelraven
sweetpeasmom There are many threads about fecal transplants on the Healing Well, Ulcerative Colitis forum. There are links to various protocols and lots of anecdotal reporting from those who have done it. Hope this helps. I wanted my daughter to try it before deciding on surgery, but she was not willing. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Abscess/fistula drain
J Jpoucher4life
rachelraven I have a draining seton, just looks like a little rubber twist tie that loops through all of it, for a fistula. Sitz baths are extremely helpful, in cleaning AND soothing the site. I carry Tucks pads with me for when I'm out. I'm a nurse, so at work, I grab washcloths and wet them and heat them up for cleaning after a bowel movement (I've done that at home, too, in a pinch... wet the washcloth and do 30 seconds or less in the microwave to warm them). But at home, I use a sitz bath most of... [ more ]
Uc-Danielle When I had my mushroom drain I took a mirror (bc the area was tendr and didnt wat to hit rhe drain$ and wiped the area with preparation h wipes. And he maybe couldn't put the seton in bc the fistula is an abcess once the infection is gone he might do a seton. They are really painful! I had a cutting one [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Bartholin cyst infected or fistula?
J Jpoucher4life
Uc-Danielle They think it is acting like crohns but isn't: they are treatin me liked have it. It hasn't gone away. I'm on cipro, tinidazole, and humira. Also with Euas but I haven't had one since April. It's crazy how similar they are [ more ]
Jpoucher4life Danielle, our stories are very similar!! Is your Dr. thinking crohns or not because it was pretty close to your surgery date? [ more ]
Uc-Danielle And I've had this since September and its still open. An extra hole down there vi hope yours isn't as painful as mine. It's like sitting on razor blades! It's really weird how your story is soo similar to what happened to me [ more ]
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J-Pouch ForumsGeneral Discussion
Humira germa-phobe
cassidycassidy
ActiveUC'er I'm now a germaphobe. So far this year I have had... Standard flu type illness URI Stomach bug Another cold with Bronchitis Lingering Bronchitis irritated by allergies And a UTI I wouldn't even drink out of the water fountain at the gym the other day. I'm super paranoid about grabbing bathroom doors with paper towels/ shirt sleeve washing my hand after leaving the gym. I would say that you should be cautious for awhile (wash hands, Purel, change clothes/wash hands/shower when you get home)... [ more ]
Pluot I also got sick less when I was on Remicade, even though my symptoms weren't controlled. Remember a lot of the symptoms of minor illness are the immune response itself, which can be disproportionate to the bug. I did get serious about good hygiene habits during that time but I think anyone should... Wash your hands before meals or eating anything, wash your hands as soon as you get home, don't touch your face or your hair. [ more ]
Scott F One of the biggest risk factors for infectious disease is being chronically ill. If the medication corrects that problem for you, it wouldn't be at all surprising if you were less prone to catching something, in spite of the immune system perturbation from the medication. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Advice needed, daughter in pain!
B beckysmom
beckysmom Thank you Sharon, will do. [ more ]
skn69 I won't say, " pray that it is adhesions' because they are a nasty piece of work...they can gum up the works something awful and they can return like a bad dream, regularly...but yes, it would be preferable to needing a resection...(and can be done through laporoscopy if not too complicated)...please encourage her to try the illimination diet, it may help...also, now is the time for her to invest in a good hand blender...she can blend most of her fruits and veggies and fibers so that she... [ more ]
beckysmom Thank you Sharon. She has been keeping track of foods that may be a problem, but didn't do the fast. I don't know if it is adhesions, that would be better than needing a resection, which is what the radiologist seems to think she may need. I've asked her to see someone while she is still at college for another opinion. [ more ]
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J-Pouch ForumsGeneral Discussion
New j-pouch discomfort
P Pluot
beckysmom Great news! Thanks for letting us know. [ more ]
Pluot Hey all! Had a very fruitful meeting with my surgeon. He says the discharge is normal though he does expect it to taper off, as well as the feeling of pressure. He says he doesn't think I have any cuffitis or diversionary pouchitis but it would be basically impossible to diagnose either of those at this time, so basically just stay vigilant. He also did a rectal exam and says the anastomosis feels great with no narrowing. Also relieved to hear that pathology was totally as expected on all... [ more ]
UCWarrior2010 Liz, I used to have the same urges and uncomfortable feeling for quite a few days after the creation of the j-pouch. They went away with time. I am hoping that is the case with you too! Glad that you are doing better. [ more ]
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J-Pouch ForumsGeneral Discussion
chia seeds anyone?
Nice NurseNice Nurse
NJK I was wondering the same thing. Also it is suppose to swell in the belly so I was not sure what the effect of that would be. I guess it can't hurt to try a little. [ more ]
Nikki2 Try grinding them. I have chia seeds and psyllium with yoghurt every morning. [ more ]
rachelraven Quinoa was bad for me, but I've not tried chia seeds. I concur. Go easy at first, and make sure you drink a lot of water when you eat them. [ more ]
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J-Pouch ForumsGeneral Discussion
How often to get pouch scoped
HarlanHarlan
TE Marie I'm scheduling one a year after the last one as I'm still having cuffitis and had c.diff problems and don't know, I might have pouchitis too. I think if you are having problems you should go annually and if not wait just like those getting colonoscopies. [ more ]
vanessavy I would go at least every 3-5 years if you do not have FAP or had cancer previously. People over the age of 50 get scoped every 5 years for colon cancer screening. Only makes sense to still get a scope IMO to prevent or catch cancer. I get scoped 2 times a year but I have FAP. One good thing is I am awake for mine. Just had a scope at CC last week and watched the inside of my pouch. Pretty neat. [ more ]
Spooky In a nutshell: you're going to find widely varying opinions on this, so it's best to discuss it with your own doctor and determine a schedule that is appropriate for you. The more expanded response: a lot depends on your pre-op diagnosis, whether or not you are having symptoms/problems with the pouch, and your doctor's own preference. (If your pre-op diagnosis was cancer or dysplasia, then you should definitely get it looked at regularly). However, even if you are not having issues, it... [ more ]
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J-Pouch ForumsK-Pouch Korner
Very strange
skn69skn69
skn69 Do not get me started on chocolate.....or ice cream...I can live, most of the time, without gluten because I have never really been into bread/Cake/pasta etc...but sugar? Never! They would have to tell me that it is poison for me to consider removing it and even then....you are very couragous if you can remove it all...not in my lifetime. Hubby says that I am now in love with the Swiss ball and that I may start to sleep on it...he may be right. Sharon [ more ]
vanessavy Cool! My pouch has been good until I ate cookies this week. Been gluten/sugar free and made a world of difference. Need to clean my diet up again. Such a pain when chocolate is in this world. I am getting nerve blocks done, helps a lot. Blocks all the pain. I live on a 6-8 on a daily basis and 5 if I am on pain meds. [ more ]
skn69 So Sweet Dpol, For now I will try anything that gives me and my pouch a bit of relief...this seems to be helping both the sacroilitis and the pouch position...draping myself, back to the Swiss ball, seems to give me a measure or pain relief so even though it is not perfect it helps... An alternative pain 'specialist' who does some sort of mental gobledigook to relive pain through hynosis couldn't get into my brain (lucky man!)...but we did establish that my level of pain runs at around 8 on... [ more ]
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J-Pouch ForumsGeneral Discussion
hernia and stoma revision
I itsnotsherry
skn69 Lynne, My k pouch surgeon said that it was impossible too but after he operated side by side with my French surgeon, the French guy, Dr B, got some ideas and innovated...he really had to invent something that would work without having to open me up again (we were on 7 or 8 over 1-2yrs)...so he decided to cut the mesh like a wide doughnut with a bite taken out of the side...he then placed the mesh all the way around the stoma and overlapped the ends to create a wide collar (or necklace)... [ more ]
lynne-sa Sharon knows a whole lot more about surgeries than I. However, back in 2006, my surgeon, Dr Vincent Fazio, said that my hernia, resting sort of above my k-pouch, could not be corrected laproscopically. He did the repair using a tennis racket incision around my k-pouch stoma and it has held. After surgery, he described my hernia as "three finger" -- I guess referring to its length. I suppose there are exceptions depending on the individual and previous surgeries. (During the same surgery,... [ more ]
skn69 Rant away...You deserve it... Well it is not such bad news, the hernia can always be done through laporoscopy but I know nothing about the stoma revision....just follow your gut too and tell yourself that you will know when you are ready.... Hang in there, I understand the disappointment but once we start on this slippery slope we never know where it will end (or when!)... Sharo [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Ileostomy Closure Wound Questions
A Amythyst
UCWarrior2010 I was quite paranoid about the ileostomy wound too after the takedown. The surgeon had put a few staples and left it open. After getting home the wound sort of opened up with a hole right in the middle. I called the surgeon and told him about but he asked me to just keep it clean and not worry. Gradually, the wound stopped bleeding and other stuff coming out of it stopped too. Now, I am just left with a pretty ugly look scar and a big scab. It will gradually fall off, I assume. Unless you... [ more ]
Jan Dollar Well, if you had told her any of the buzz words that might get her excited, she would be having you come in to see a colleague or to the ER. So the fact it can wait for tomorrow is a good sign! Jan [ more ]
Amythyst Thanks guys! We did call... but his surgeon is doing surgeries all day long so his nurse said she would ask tomorrow and then call us back tomorrow. So, that's why I came to the forum...faster answers. Haha... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Anucort Usage
TE MarieTE Marie
TE Marie Pluot, Good Blog [ more ]
TE Marie I think you or someone else talking about Flagyl causing it which made me look into Mesalamine. I didn't have an immediate side effect so it probably wasn't the cause. I just have a feeling it is the cause. [ more ]
Pluot Do you ever take Flagyl for pouchitis? I started developing neuropathy from using Flagyl to treat my UC (most common in the extremities, but in my case it was optic nerve, and the straw that broke the camel's back with regard to surgery). [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
jpouch-urtheral fistula
C ccc4
ccc4 Well next week is the big day. Dr. Remzi and Dr. Angermier will try to repair my husband's fistula. Please remember us. We are praying this will fix his problem. [ more ]
BarbieG If you are close to Texas, Houston has a great medical center with hundreds of talented doctors. You could drive there. I had my first few surgeries in Houston. I grew up in a New Orleans suburb. Miss it! Happy Mardi GRAS! [ more ]
ccc4 Just wanted to give an update. We have appointment this month with dr remzi in Cleveland. Thanks so much for your help. [ more ]
See all 8 replies...
J-Pouch ForumsWomen's Health & Pregnancy
First Fistula. Need advice.
LizzLizz
Ginabello Hi Lizz how was your fistula confirmed? When you say it hasn't given you any problems what symptoms do you have? I am waiting to hear on a surgery date for a possible fistula if found i will have a seton put in.. I had a pelvic MRI a little over a week ago and it showed inflammation where my abcess that was surgically drained is.. I really thought the MRI would confirm yes or no but not my luck): [ more ]
clouseau Lizz, You will make it through this fine. I was just at CC with Shen and Remzi for my vaginal fistula and yes I have Crohns also. My fistula hasn't caused problems yet so we are going to hold off doing anything until I have issues. I'm on cipro and tintazole and occasionally take pepto bismol instead of the tintazole so I am on less anti-biotics. You couldn't be under better care than with those 2. I will be thinking of you and wishing you the very best. [ more ]
Uc-Danielle nJk- I was just told that they can be uc related also from The dr that came in my room which I didn't know but I don't know a lot! [ more ]
See all 23 replies...
J-Pouch ForumsGeneral Discussion
Looking For Good Colo-Rectal Doctor in MD, DC area
D Dot2
Amythyst My husband used Dr. Daniel Otchy from Fairfax Colon and Rectal Surgery... its in Northern VA. [ more ]
Jpouch8888 http://www.hopkinsmedicine.org...efron?lastName=efron [ more ]
Dot2 That is where she had her first one - her and surgeon have kept in contact all these years - Unfortunately he retired and is teaching down south - but he saved her rectum when everyone insistt had to go I wonder if that is the easy fir Drs to go?? [ more ]
See all 5 replies...
J-Pouch ForumsOstomy & Skin
Tips/Tools for Barbie Butt Prep?
Lynne2Lynne2
liz11 Lynn, The two tests are to confirm that you have two negatives for cdiff. Both are the same... poop tests. That's it. nice and easy. gross, but nice and easy! And once you have had cdiff, it is easier to get. So just remember to ALWAYS get cdiff checked if weird things start happening. With an ileo - more output, fevers, weird and grosser smell, etc.. Always, ask for a cdiff test. Lots of docs don't think you can get cdiff without a colon. Wrong. But cdiff test is easy. For me, I just get my... [ more ]
Lynne2 Hi again, Liz. I'm posting this message instead of pm'ing because others might benefit from your response. What are the two different c-Dif tests you mentioned? Mine was discovered during a scope because my GI saw some unfamiliar "dots" and decided to take a stool sample while he in there. Will i need to do the tests ou mention via scope or just regular lab stool sample? Thanks! [ more ]
Lynne2 Liz, you know the perfect advice, as always! Thank you very much for the insight, suggestion, and support. I appreciate your feedback so much. Thanks! [ more ]
See all 20 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Fistula, incontinence, pouchitis, cuffitis - any hope?
ClickyClicky
clouseau First of all Clicky my thoughts are with you. I was not able to have children because of all my scar tissue from surgeries so please, be so thankful for that child, you are very fortunate in that regard. I have been lucky that my vaginal fistula hasn't had any issues yet. Everyone on this board is so wonderful with sharing and I feel so blessed to have found you all. I just wish there was something more I could do to help everyone else. [ more ]
vstRN Yes, my surgeon and GI both believe that the cuffitis was the cause - it was reeeeeally bad. To tell you the truth, I should never have been reversed to begin with and had the mucosectomy right away. The pouch advancement surgery was actually the easiest surgery I have had yet. I was prepared for the worst, actually terrified of it, but really, it was a piece of cake. My surgeon was able to do it all transanally though which is why I had such an easy time with it. He had initially given me a... [ more ]
Colleen2001 Hi Clicky, You have a right to feel sorry for yourself right now, so don't feel guilty on top of it. I had an RV fistula that I had repaired last year, and opted for an ileostomy until everything healed. I did not have an infant, but two young children, so know how hard it is to leave them. I was so glad I had the temp ileo. I felt so much better, gained weight (which I still haven't lost), ate what I wanted, etc. I was happier, healthier, and a better Mom because of it. It's worth the... [ more ]
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
About to burst......overwhelmed- appreciate any guidance/advice
N Nat
Lynne2 Natalie, Liz is an invaluable resource and I'm so glad to see that you've connected with her. I don't have anything to add except to tell you the term my surgeon used with me. He told me he plans to preserve part of the muscle that provides blood supply to help with wound healing and provide a base for holding the stitches after he removes my j-pouch. He used the term "intersphincteric muscle." Sounds like that's what you had done. You ARE a Rock Star! And don't you forget it! :-) Best... [ more ]
Nat Hey Liz, Thanks so much for that extra info- good to know, and I will ask ask about his ideas for draining the wound. I have always been leaking from it (mainly from the vagina- as that is the path of least resistance), and a little from the tiny hole that is still left from backside. I had assumed he would open up my anus (as it is sewn up) and then it would drain through there- never thought about it closing on its own if it were opened up. And the drain sounds just awesome ......But... [ more ]
liz11 nat. I don't understand the details of how my backside parts were removed when my jpouch was ripped out. But I definitely still have "butt/anal" muscles. If I read the op report there are some big words in there like intersphincteric and anusectomy. I have no clue. But that doesn't feel strange. All that feels strange is the pressure from the unhealed wound. Thinking you might want to ask how they intend to drain your wound. There are probably a few options: thru vagina, through the tiny... [ more ]
See all 13 replies...
J-Pouch ForumsOstomy & Skin
Weight training with ostomy
B Badplumbing
vanessavy I have a continent ileostomy. I have done Muay thai, Bjj and I powerlift/Olympic lift and Crossfit. I have had no issues what so over with my stoma or pouch. [ more ]
arvenderpan I think you should must follow the "skn69" instruction she have a wonderful suggestion for you just hold for a while it will be beneficial for you as she is saying.. I really appreciated "skn" your post.. thanks for this.. [ more ]
Badplumbing Thanks, skn69- I certainly am willing to give it all up during the healing phase or phases- will do whatever it takes to ensure success. What concerns me is the idea of forvever giving some things up or forever being stuck on low weights, and your answer at least gives me hooe thatisnt the case. Have read of firefighters having perm ostomies and aurely they have to be able to be capable of carrying people. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Questions about adhesions ?
M mads101
skn69 Mads, I am no doctor so I won't pretend to know the exact terminlogy but...when you cut into the body it creates scar tissue...some people create more than others..."What are abdominal adhesions? Abdominal adhesions are bands of tissue that form between abdominal tissues and organs. Normally, internal tissues and organs have slippery surfaces, which allow them to shift easily as the body moves. Adhesions cause tissues and organs to stick together." So that is the quote that I found on a... [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Chronic Pain, breakthrough pain
KelseyHey2308KelseyHey2308
vanessavy Visceral Manipulation by an experienced Rolfer breaks up adhesions FYI. Surgery usually just grows them back + more. I say to always look into Rolfing. Just like getting a massage or some PT but helps with scar tissue and the gi tract in general. [ more ]
Scott F You're quite right, Jan. I think those combination drugs do more harm than good. [ more ]
Jan Dollar The problem is, Scott, that they put Tylenol in so many products that people overdose on it by taking it by itself, not realizing they also took multiple doses in combination drugs. Plus, it is not like a side effect of other drugs that just goes away when you stop it (like the gut inflammation of NSAIDs), once you fry your liver, it stays fried. Jan [ more ]
See all 19 replies...
J-Pouch ForumsGeneral Discussion
Mother's Day
R Rocket
Rocket Thanks TE Marie, I am doing pretty good. I got scoped this past Wedndesday and have a little inflamation of the pouch so its back on Canesa. I see my GI every six weeks. I feel more comfortable that way and he can keep a better eye on my condition. In the past, it was once every 6 months or so or until I had severe Pouchitis. Rocket [ more ]
TE Marie Thanks Rocket! I haven't seen you on here lately. that probably means you are doing well. I hope so. [ more ]
Rocket Have a beautiful weekend too. [ more ]
See all 6 replies...
J-Pouch ForumsPouchitis
budesenide
B badguts
Scott F Ride that pony, badguts! Good luck! [ more ]
badguts I met with my GI doc and he was suprised at the progress I've made. No Cipro, NO Xifaxen, No Canasa suppositories,down to 1-500 mg tablet of Flagyl a day and 6mg budesinide. I've been taking max doses for years on all of this. I'm going to 6mg budesnide for a mth down from 9. Then 3 for a mth then 3 every other day for a mth then none. Wish me luck!! this my be to good to be true, but I gotta ride that pont till it drops!! [ more ]
Scott F One unusual aspect of a steroid taper is every-other-day dosing. So you might alternate 4 mg with 2 mg for a while, or alternate a low dose day with a no-dose day. If you decide to do this on your own, pay careful attention to the symptoms of going too quickly. This can be rather dangerous if mishandled. [ more ]
See all 7 replies...
J-Pouch ForumsPouchitis
MAINTAIN REMISSION
kronikDiarrheakronikDiarrhea
rachelraven My experience with a J Pouch has been overwhelmingly positive as a whole. We're all different. And my UC was totally out of control when I had my surgery. Since surgery in '91, I've never needed meds... Only recently did I take Cipro for pouchitis, and honestly, I didn't feel "sick," but pouch bx showed it, so I took it. I've never needed meds to slow or thicken my output, and I've been blessed with nighttime continence. I was dx with lactose intolerance in 1983, and I still can eat dairy,... [ more ]
Jan Dollar Yep, if you have dietary intolerances or IBS, surgery or antibiotics will not make that go away. It is part of your innate self, so you may as well get over trying to "fix" it, and start accepting it and dealing with it. If that means no more wheat or dairy, or whatever, it seems like a small price to pay to feel well and have a comfortable gut. Of course, that does not mean that diet will cure all your problems. It will only address things that are caused by diet. For myself, I have never... [ more ]
John95 I totally agree with the OP about the importance of diet. It has made a world of difference for me and allowed me to finally get off antibiotics. Everyone is different, but everyone is not necessarily condemned to a lifetime of misery with the j-pouch, even if they have suffered for a long time. [ more ]
See all 9 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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