Community Forum

I've been in denial about my UC for about 6 years now.  I'm going through the worst flare up ever.  I can't control my stomach, I can't eat some of my favorite foods, and I can't be too far away from a bathroom.  I've now started taking my meds relgiously, which I'm freaked out about because I'm on steroids, but I think I'm just starting to emotionally deal with my disease.  Right now I'm pretty mad about it.  Why do I have this?  Why doesn't anyone else in my family have to deal with this?  I also feel very alone, like no one understands.  I'm also really embarassed, especially around my husband.  He's been wonderful, and very understanding, but I just feel gross.  I guess I just need to know that I'm not the only one going through this.

 Reply posted for zroc79.

Well! This will be my first post. My GI doctor has the personality of a worm. I don't understand this guy at all (Dr.Faisal-Lake City, Fl.) . I was in his office 20 seconds and all he says to me is that he is putting me in the hospital. What makes me concerned about that was that he did not even examine me. Come to think of it. He has never actually examined me except for a few token presses on my belly that he did while I was in the hospital. His nurse practitioner has been the only one to deal with me. She is going to have the other GI doctor (Dr. Rassado,or something like that ). He supposedly is a more patient friendly physician. I sure hope so. Because I feel like this Dr. Faisal has treated me like a dog. I would not recommend that anyone with Crohn's or colitis to see Dr. Faisal. I know that I have had to endure more pain with this doctor than any that I have ever had! They had me in the hospital for 8 days and gave me a lot of high-powered antibiotics and steroids. They have made a lot of money off me. I also believe that I've been given a lot of unnecessary  drugs and tests while in the hospital There is such a poor selection of doctors here where I live. They will drop you in a heartbeat if they feel like it. It's wrong. I guess that it's the price you pay to be able to live out here in the country. 

 Reply posted for zoe.

Zoe,

My doctor was very ready to get me on Remicaide but I wanted to try hydrocortisone enemas first because of the potential side effects of Remicaid.  Taking the enemas nightly and doing extremely well now.  Very little pain, bleeding is gone and 2-4 bm's daily and still improving. Started seeing improvement within a couple of days of taking the hydrocortison.  Started tapering off prednisone a couple of weeks ago.

If I start to flare after getting off the prednisone and hydrocortisone there's a good chance I'll try the Remicaide to see if that will get me into remission.

Thanks for the well wishes and the same to you.

 Reply posted for zroc79.

I have had to stand back and watch my 8 year old go though this. It is draining, emotional, embarrasing, and makes you feel all alone. My daughter was diagnosed 4 days after her 7th b-day. We had battled this since she was 18 months old. She has been on Imuran for the last year & 1/2. I had noticed her going right back down towards the end of this school year. We made a trip to her Gastro Dr. I knew it was the enevidalbe, Remicade treatments. This is the last thing I wanted for my little angel. The much anticipated day came July 3rd. A little over two hours & she was done. Accidents stopped, she was able to eat, she had more energy, and was smilling from ear to ear within 2 days. I love this stuff. She had gotten so bad we were doing steroid suppositories twice a day, since January! She has now had 2 treatments & I wish I had done this for her a long time ago. Keep your head up & consult your Dr. about Remicade. It has put a smile on my little ones face, that is priceless.

Christi

 Reply posted for Steve.

Have you tried Remicade?  I was going to do it this year but somehow I got better, before I got worse!  I heard that it could be a good treatment?  Once a month through IV.  Or 6MP?  I try to stay as far away from Prednisone as possible.  Good luck!

 Reply posted for zroc79.

I have had UC since I was 20 years old...that was 23 years ago.  It began like a secret, embarrassing and debilitating.  I didn't know how to deal with it so I hid away from friends, family and any potential relationships that I could have had.  I was a strong headed, rebellious girl with ideas that this was not who I was and it would not define me.  I was wrong.  I never wanted to get close enough to a man where I'd have to share my illness with him.  This crazy, gross uncontrollable illness. When I finally accepted my illness for what it was I had just survived a burst appendix.it was misdiagnosed by a general surgeon who thought I was having a run of UC and I was sent home only to suffer and almost die.  I had my cecom, partial small and partial large intestine removed during this emergency surgery.  My body had to learn how to work all over again for some kind of 'normal' existence.  During that time I spent most of my time starving myself so I wouldn't have pain and taking medication as I was told. I was on prednisone many times in my 20's and after the surgery, in my 30's.  It helped and hurt me in many ways.  I had double cataracts at 39, arthritis and many other side effects from the so called 'miracle' drug.  I've had transfusions and iron infusions, handfuls of pills that are required to keep my life 'normal' and every holisitic creation put in front of me.  I am still smiling and single and trying to make everyday better.  I found a diet without any type of sugar from pasta, bread, beans, rice, grains, dairy etc....has helped me manage, but who can stay on a set diet all the time.  A girl has to have chocolate!!!  We are all unhappy that we have this...but we're not alone  I feel as if I've missed out on years...being embarrassed, avoiding social situations, quiting relationships when they got too close...you name it..  What's next?

 Reply posted for zroc79.

I feel for you! I have been struggling really bad with my UC the past while and I'm in the bathroom 20+ times a day and my poor husband has to work full time and come home and help with the kids! It really sucks having this disease I know, but just know that there are others out there who are going through the same thing and we pray for you, just cause you don't know we are here doesn't mean we aren't thinking of you!

 Reply posted for zroc79.

I've had UC for about 25 years now and currently getting over one of the most difficult flare-ups I've experienced in a while.  Getting better because the doctor tried something different this time after weeks on the prednisone didn't help for the first time.

Good days and bad days and more to come.  10 to 12 bm's daily with bleeding nearly every time and a good amount of pain.  That's where I was a month ago.  Still somve very painful days, bleading a couple of times a week but only a few bm's.  

Hang in there and you will find good days again.  We always want to find a problem that looks like 1 +1 = 2 but it doesn't work that way with UC or the medications since everyone reacts differently to both.

Staying on the maintenance medicine even when you feel good and sticking with things like prednisone until you are completely healed are things I have not done well in the past.  I wanted to be healthy which, for me, meant being able to say I didn't need to be taking medicine.

You are far from alone and I hope things get better for you soon.

 Reply posted for leogoddess72.

hi my name is matthew and im dianosis with crohns disease and i have a severe crohns i dont have no regtum or a colon and no large intestine half my small intestine theres same day i have my made day and i had a lot of problems i still have problems and i feel like why dont it go away so you are not a alone

 Reply posted for zroc79.

I want to scream I want to cry to throw things and sometimes just die.

My daughter has crohns. She is 11. Diagnosed 2 years ago. I denied denied denied. Scared I gave her the meds they suggested, in denial I seeked out a second opinion, in anger I cursed GOD! In despair I offered my soul to the devil to just make it go away.  In desperation I did not sleep for months while I read every book and educated myself on every internet site. In anger I returned to denial denial denial. How can this be happening? Why? If I just find the right Dr it will go away and they can fix it all.

In acceptance I still go thru all these emotions and sometimes in a matter of minutes. This illness stinks!!!

Everyone tells me to be strong, but I really think a break down sometimes is a neccessity, but then we all have to jump back out of that hole we dig and start all over. I wish you the best of luck with this illness and hope you find a way to cope. We all cope in different ways just remember there is nothing wrong with the way you feel ! And you are never alone.

 Reply posted for zroc79.

Don't ever feel alone. There are support groups and even within those groups support people you can call that can be helpful to connect with. ust find the right one that fits you. As far as the meds I have been there too! Just remember stay on them, it takes time. Eventually they will work. If you don't feel you are getting results or your doctor isn't listening than get a second opinion. Medications have come a long way. But it can be a slow process in the beginning to find what works.

Talk to your husband and let him in, educate him and your family without forcing them. Know who's comfortable and who may not be. Anyhow my friend find the food that works bland is best right now no fiber. Hang in there. Toilet paper & Air freshener are our friends!! God Bless.

 Reply posted for zroc79.

I was diagnosed with UC in 2003.  This was after having stomach problems most of my life.  My daddy was diagnosed with iliatis when I was a child.  My dr tells me he probably had Crohns.  I have donne pretty well until this flare-up.  It started in early April.  My colon is healed according to my colonoscopy, but I can't seem to be rid of the symptoms.  I am taking 12 asacol each day and on prednisone.  The prednisone is awful.  I am now coming down on the prednisone and I am very tired.  I hope not to have to go on prednisone again.  My previous dr did nothing for maintanance.  My present dr is going to keep me on asacol as a mainatance drug.  I am praying that will keep me out of flare-ups.  It is a difficult disease to understand.  I don't understand why I'm still having at least 4-5 bowel movements per day if my colon is healed.  I really spent a lot of time in prayer last night asking God to heal this disease.  I am grateful that my disease isn't as bad as some people I read about, but it is still a struggle.

Hang in there.

Anita

 Reply posted for zroc79.

Hi there and always know that you are not alone on this journey.  I know I have good days and bad days but with the right medications and always searching for a better way to handle the disease things get better.  Have you thought of joining a group in your area for your diagnosis?  I joined a crohn's/colitis group in my area a few months ago and it has really helped me to be able to talk about the disease with others who are in the same boat.  I wish you all the luck in getting to a manageable point in your life and it is out there, I promise!  Keep your chin up!