Recently diagnosed with UC. Looking for advice & tips

You sir, are NOT full of crap.

No UC, but a few colonoscopies. Procedure's a breeze, it's the prep that sucks.

 

My girlfriend has food retention problems, also on entocort
Microscopic colitis

 

Look into autoimune paeleo diet, you are what you eat. I try to operate the keto diet principles. Once you cut out the processed junk it is amazing how much better the body operates. It is bloody hard going though, I won't lie. Suddenly food becomes a big part of your life. Preparing and planning.

 

Three months ago my nephew's wife had a fecal transplant for her previously unresponsive UC. Her response to the transplant has been transformative in a positive way. My suggestion to you would be to discuss the possibility of having this procedure done with your G.I. doctor. Best of luck to you going forward. Here's an article with some info:

https://news.weill.cornell.edu/news...ffective-for-patients-with-ulcerative-colitis

 

Food, beans digest slowly. If you can, try oatmeal with some chia seed added (soak the chia seed in water overnight in the refrigerator).

 

Really? I've heard it "blows".

 

"Go lightly" it is not...

 

Ny wife has Crohns; which is closely related to UC. She was diagnosed in 1974. I have asked her to respond.

It can be very difficult to manage and there are varying degrees of the disease. Lots of new auto-immune drugs out there, some of which are outrageously expensive but very effective. If you are offered any of these as an option, many of the companies will provide the treatments at no or relatively inexpensive cost if you apply for assistance. I have been on Prednisone for 25 years and its side effects are bad for most, but have not affected me.. If you can run a short course and get off it is better. Choosing correct foods for uc is important. I often resort to liquids such as Ensure. The bathroom needs are always an issue and you have to be aware of where you go and how accessible restrooms are. It is just something you have to deal with. Having a G.I. who specializes in Crohns / U.C. is deinitely a good idea. I have survived 44 years with crohn's and you can do it with uc. Best to you.

 

Potato, Fish, pasta cooked Veges... Diet should help digestive issues, stay away from cream ,sugar until feeling well!

 

I'm at work...but I would like to P.M. with you...

I have been down the path you are on.
I will write to you tonight.

I read this thread. I have relevant info to share with you regarding meds... Etc.

Froedert Medical College in WI saved my quality of life.

 

I could be wrong, but I'm pretty sure that unless you can get enrolled in a research trial FT is not an approved treatment for anything other than acute c. diff. Infection in the US? I think it's fairly standard in the EU/UK. Hopefully we will catch up soon.

 

In this time of need, A fellow member of our site has reached out for help.

I'm pretty sure that he is going thru a lot of anxiety over his situation.

Everyday living with various forms of this Chronic Disease can take the wind out of your sails. Imagine that you are living a real life version of the movie "Thinner" by Stephen King. Add to this the Doctors visits that only show the road to remission is a guessing game at best.

Let's all keep our fellow member in our thoughts, wishing him the strength to see this thru to what we hope is a good outcome.

FG

 

Correct

 

I agree FT would be very well worth a shot. There are people doing it on their own these days. The downside risk is pretty low as long as the donor is very healthy. For example,
if you had an under 18 year old kid in great health, I don't see much risk, especially if it's your own kid and therefore presumably has very similar symbiotic community species in the GI.

 

my eldest bros suffered from this in the extreme , sincerly a ton of best of wishes comming your way! listen to FG

 

I have UC also. I have been in complete remission for 9 years now after 2 years of hell. At my worst, I had to go every 45 min. round the clock to let the bloody stuff out. It was just awful.
Mine was so bad they wanted to cut my large intestine out and hook me up to a bag.
I found a different gastro doctor.
He put me on Remicade since I was unresponsive to everything else. Actually worse than unresponsive. I had a severe reaction to some of the Asacol/Mesalamine and derivative meds that caused it to get real bad real fast. (That was with the first 3 doctors.)

The last doctor treated it very aggressively with high dose steroid (temporary to stop the inflammation) and mercaptopurine until the Remicade kicked in.

After about 2 months on the Remicade, he weaned me off the other drugs entirely.
Within 3 months on the Remicade I was in complete remission.
2 years ago I switched to Symponi, which is a self injection once every 28 days, mostly for the convenience.

I have been fortunate in that since remission 9 years ago, I am not diet limited at all.

While I was in bad shape, I listened to lots of people who said it could be controlled with diet, but mine could not.

So my strong advice is to find a really good GI specialist, don't be afraid to dump him/her and find another until you get results.

Remission is possible.

As for the cost of the immunosupressives, it is very high. Most insurance picks up most of the cost of some of them. Work with your GI staff to find out which ones you qualify for.

As a last resort, contact the folks at Janssen Carepath. If you work with them prior to your first dose, and if you qualify, you can get the meds for free.

I pay $5 every 28 days for my Symponi injections.
Almost anyone can afford that.

 

Whoa, I have never even heard of this. My heart goes out to all of you that must deal with UC. You all are scary me. I have decided to have a colonoscopy this summer, but I have not scheduled it yet. Yeah, kinda chicken even though my wife, father and both younger sisters went through it just fine. Best wishes to get through it.