I play basketball and golf. I switch to a mini bag and wear the little 1-inch belt plus a wrap called a my-hip T. The my hip T is designed to hide people's muffin tops, but they work well as wrap...
I am 5 months out from total proctocolectomy with APR, due to UC for 24 years. My "Barbie butt" healed up nicely. I kept it as dry as possible by keeping fresh gauze tucked in there for the week I...
You said that you are hearing that you may have PSC. What test(s) did you have and/or results were discussed with you to lead you to believe that? I am not trying to pry into your personal life, but...
I have heard a lot of people say they use these for swimming: http://www.alpglobal.com/Sure-Seal-TM-Rings.html Sunny13, maybe they would be something you could try. They are designed to stay on for...
I am much taller than you, and still don't like how the longer bags rub my thigh. I use the Coloplast Sensura Mio "midi" size bags and angle the bag inward a little. The mio bags have the roll up...
I had/have UC and PSC. I say "had/have" because I had my colon removed a few months ago due to UC, and had a liver transplant back in 2013 due to PSC. The PSC can come back, though, so unfortunately,...
I was on a daily Rice Krispies kick at about the same time out from surgery that you are now. I would eat them with sugar, milk and banana slices. I didn't have any issues. Of course, I would...
I had a perm ileostomy installed 4 months ago. A j-pouch was not recommended because I am on lifelong immunosuppression because of a liver transplant, and leakage/infection could go bad and endanger...
I had joint pain prior to surgery. Now I do not....
I also had a liver transplant, in October of 2013, due to primary sclerosing cholangitis. I also had a proctocolectomy with APR (same as you) on March 10th of this year. My UC had always been easy to...
I need to get a change of clothes put in my car just in case this happens to me. I can see where it would fluster you for a few seconds while deciding what exactly to do next. I am 3 months post...
Hollister bags are narrow at the bottom. I actually prefer a wider opening at the bottom of the bag, like the coloplast mio bags. Maybe I'm different from everyone else in that preference.... I had...
That is ridiculous that you GI will not refer you to a surgeon. Will your PCP do it? Remicade did not work for me. I could not even do all three loading doses, as the first two made me sicker each...
I do not have your same issues exactly, but my colorectal surgeon said my intestines were "tangled", and I had an internal hernia. This was probably from my previous liver transplant surgery in 2013....
Blueglass, I definitely try to stay hydrated, as I know it's very important. I started off that paragraph by advising the OP to do just that. ;)...
Pop a couple immodium when you want to slow things down. They will not harm you. Some people have constant high output and docs put them on immodium regularly. I have used them quite frequently when...
I am on day 6 also. I use the two-piece click. I change my bag every 2 days or so, though. I found out there is an even smaller wafer (40mm), so I'm going to order those next time. My current one is...
To the OP: The fact that you said UC "turns into" crohn's makes your credibility=zero....
I sit to empty also, and make sure to pull my pants down to at least past my knees. I also keep the bag pinched shut until it is pointing down into the bowl all the way, then let it go. I understand...
If you haven't already, check out this link : http://www.ostomy.org/Ostomy_Travel_Tips.html and print out the travel card. I am only a month out from ileostomy surgery, so I have not traveled yet,...
Is your urine darker than normal? I would tell your GI about the white stool immediately. He should order labs to check your liver function. I wouldn't think he would need to see you in order to...
Giving the 2-piece a try. I had my 3-week checkup at the surgeon's office yesterday, and my incision is healing very well. So I decided to try the Mio, and I asked the ostomy nurse to help me change...
CarenZ, I wonder why the pre-cuts would be smaller. That's interesting. Thanks for the info. Once my stoma settles into it's "forever" size, I should give the pre-cut a try....
I got my Mio samples on Friday, just before the home health nurse arrived. It was like christmas, lol. I was a little disappointed at the size of the wafer, though. It is pretty big. It would overlap...
Thanks so much for the info! :) As I said on the Mio thread, I am 3 weeks post-op and am in the process of trying out different appliances. 7 days wear time is great, and I hope I can find a system...
CrohnieCJ, What is the convatec moldable that you are using? I am a little over 2 weeks out from a proctocolectomy with perm ileo, and I want to try a lot of different types of appliances. I don't...
I was diagnosed with UC at 24 and PSC at 34. It was 14 years between diagnosis and liver transplant for me, at age 48. That was Oct of 2013. I believe somewhere between 75 and 85% of people with PSC...
I am 11 days out from surgery and submitted a request for Mio samples a couple days ago. I am still a newbie, so I probably won't try it right away, but plan to try it at some point. I will be...
I did the SCD starter diet, full on, for 5 days, twice last year. I didn't make the yogurt right away, but added it after the 4th day or so, both times. I never messed with any almond flour either,...
Good they are going ahead with surg as an inpatient. You get "top-billing" that way....
Thanks again for the responses. I have heard other stories of people going back because of dehydration at about the same post-op point as you did. I am going to try and take all of these cautionary...
Listen to your body. You said it feels like it wants the medication out. It is telling you something important. The fact that you have not had any liver function tests is also troubling, as others...
Sorry to hear you are still in. It sound like you have made a decision, and that's over half the battle, in my opinion. The course of my disease has been different than yours, but I have come to the...
Thanks, superblanks. That helps ease my mind. :)...
My surgery isn't scheduled yet, but I have a consult this coming Tuesday. This is one of my main concerns also. How does a person's skin stand up to having adhesive on it, 24/7/365, without becoming...
I read that you only did one FMT. Are you med-free now? Do you plan on doing it again the future?...
I have not had the exact experience you mentioned. But sorry, I would not touch 6MP with a 10-foot pole. http://livertox.nih.gov/Mercaptopurine.htm...
I know you said they tested you for c-diff. Just make sure it was done by PCR. It won't hurt to ask. I was in the hospital recently from flaring badly and becoming dehydrated. Found out I had c-diff,...
Brucen36, I also hope this research continues to grow. I have heard of the Taymount clinic. There is a FMT success story about it here:...
I have done quite a bit of reading since my post last night. I also forgot to mention that my FMT, as well as most others I have been reading about for UC, are given by enema, not taken orally. There...
Also wanted to mention that I sent a sample to the American Gut Project in early December. No results yet. It takes months, I guess. Has anyone done this also? I would be interested to find out what...
I am going to recieve an FMT this coming Monday. I have had UC for 24 years, well controlled by Asacol alone. I went into a moderate flair that started in Feb 2014 (4 months after my liver transplant...
Thanks for the post, ks1905. :) I'm glad you like your j pouch. I flip flop back and forth in my mind about whether to go perm illeo or pouch. I read about pouch complications that last for years for...
Westy, I was diagnosed with PSC 15 years prior to transplant. They found it through normal followup after I had my gall bladder removed. I know the j-pouch is an option. I'm just not sure I want to...
Thanks, Eva Lou. I know the title of my post kind of narrowed the audience quite a bit. :) , but was still surprised to not have a single response. It sure looks like you tried everything but the...
Hello. New here. I had a liver transplant in Oct. of 2013, due to PSC, and have been in a very stubborn UC flare since March of 2014. My old faithful Asacol (which controlled my UC for over 20 years)...
Thank you all for your responses. This is such a difficult decision, with many factors to weigh. I have read about so many potential complications with these surgeries, and if I would happen to be...
Thanks, buckeyecrohnie. Northwestern is about 4 hours for me, and CC is 5. I know that selecting the right surgeon is the most important decision in this whole process (aside from the decision to go...
I live in SW Michigan and am looking into total colectomy with eventual j pouch. It seems like "everyone" travels to the Cleveland Clinic, and although that is not out of the question, I would prefer...
I did the intro diet and pretty much phase 1 stuff, twice this summer. I ended up losing too much weight, something I could ill afford to do. I have since been pretty much SCD, with lapses here and...