I had colon removal surgery back in 2014 due to severe UC. I have an ileostomy. I had my rectum removed but still have my anus. I did suffer total ED. I was in my late 40's when I had surgery. Since...
I checked with the company about how to empty. This was their replay: For the time being the waste is eleminated via a plastic sleeve (Convatec) that is directed into the loo. We are in the process...
I just had surgery two weeks ago. I have an permanent ileostomy and I'm surprised at how easy it is to take care of. The one thing I did right after surgery was walk. I walked so much while I was in...
I just had surgery two weeks ago. I have an end ileostomy also. I had UC - it's so nice to say "I had UC" - for over five years and was in a terrible flare most of the time. Overall the ileostomy is...
Yep, I'm loving my ileo too and it's only been a week and half. If someone had told me five years ago I'd feel this way I would have thought they were crazy. I'm glad to hear you're doing well. It...
Thanks for the reply Ryan. Yeah, I can't pee at all. My bladder fills and then very little comes out. Actually both my urologist and my surgeon both aren't too concerned about it because after pelvic...
I had surgery a week ago, last Monday for my severe UC. I have an end ileostomy with my rectum removed. Everything with the ileo has gone great and I’m handling it well. I have very little pain. The...
Good luck. Sending prayers your way!...
I hear you. I’m 48 too and will be having surgery this Monday. I’ve had UC for about six years. Last few scopes showed dysplasia. I’m having an ileostomy instead of a j-pouch because I have...
I’m going to be having surgery in a week and a half. I’ll be getting a permanent ileostomy so I’m wondering about stoma placement. I’m a male and I’ve heard that it’s best to have the stoma below the...
Yes, Pluot. That’s exactly why I wanted to have it done in 3 stages. When I first found out I had ileitis backwash, even before I knew I had strictures, I was concerned I might have Crohns but all...
I’ve had UC for about six or seven years and have tried anything and everything to get in remission but nothing has ever worked. Now because my colon is basically falling apart and I have low-grade...
I wonder if the combination of Humira and Amino Acid Therapy is the trick. I did the therapy for over three months. Although there were times I felt like I was starting to get better it would only...
I've been on LDN for four years and I'm getting ready to have surgery in two months. I suggest trying it but like every other treatment for UC it works for some and not others....
Pluot - I’m 47. I’ve had UC for about six years. As far as sex and dating goes I know it’s all about my attitude. I’m a confident guy and I’m not shy about telling people even now that I might have...
My gastrologist isn't concerned about cancer from Remicade. He's concerned because I've had dysplasia on two separate scopes from two different doctors and biopsies from two different labs in the...
Thanks so much for the quick replies. The people on this site are amazing. I can't imagine going through something like this years ago before the internet when you were basically on your own....
I had a colonoscopy two weeks ago. Here’s what my doctor said “I’m blown away by the severity of your disease. I have no idea how you’re functioning.” My last scope was in April 2009 and it was...
Mark, Are you still on the Amino Acid Therapy?...
Mark, Has the Amino Acid Therapy stopped working?...
Since I add the Tyrosine Replete my symptoms have disappeared during the day. Once I go a couple of times in the morning I don't feel like I have UC during the day at all and a few weeks ago I...
Well, I did a dosage change last Sunday. I went from 2 NeoReplete a day to 8 and from 4 D5 Mucuna a day to 6. So far I feel worse. Actually bleeding more. Will test soon and try another dose. It's...
This is my 8th week. My colitis symptoms are a little bit better - I still can't even have a formed stool and I go multiple times (mostly in the morning) but other wise I feel really good. I have a...
Mark, Have you had a dosage change in the past few days?...
Yesterday was my fifth week on the treatment. So far it has had no effect on my UC symptoms. Here’s what I’m taking - 8am 1 NeuroReplete 1 D5 - Mucuna Noon 2 CysReplete 4pm 1 NeuroReplete 1 D5 -...
Mark, That’s great. I wonder if being able to tolerate more foods is just a matter of time as your body heals. Also I’d be curious to know if Dr. Stein has any patients that can eat anything they...
Today is my 20th day of this treatment. I've done one urine test so far. Based on that Dr. Stein reduced my dosage of NeuroReplete from 4 twice a day to 2 twice a day. I’m also taking 2 CysReplete...
I’m on day five and so far things are really rough but that’s more to do with the fact that I’ve been flaring pretty badly for the past couple of weeks. I’m going back on Prednisone starting tomorrow...
Well, I started the treatment this morning. 4 NeuroReplete twice a day and 2 CysReplete three times a day. I spoke to Dr. Stein earlier this week and got my supplements yesterday. I’m in the middle...
Lemon, How many weeks have you been on the treatment and how much has it cost you so far?...
Thanks so much for the responses. I’m going to go ahead and try it. I’ve been in a flare for about 4 years and I’ve tried everything but nothing has really helped. I’d been considering surgery until...
I’m going to contact Dr. Stein this week and get started on this treatment but I’m curious about one thing. Was anybody in a bad flare when they started? I’m tapered off of Pred a few days ago and my...
I'm on 20mg. Should be done by the end of the month. Even though I've had UC for a few years it's my first time on pred. So far it's been okay. It hasn't put me in remission but it's calmed things...
Mark, How many weeks have you been on this treatment and how many urine tests have you had? As soon as I taper off I pred I plan to start this. Is there a point where you say this is as good as the...
Mark, I’m getting ready to try this treatment. I’ve been struggling with UC for over five or six years. After the initial phone consultation fee how much did it cost to get everything you needed -...