Crohn's Disease Support Group

My name is Amanda and I'm 36. It's amazing to see how many of you are feeling the same things I am. Sometimes I feel like people think I'm just a whiner. It's like if you don't complain everyone thinks you are ok and start with demands, and if you do complain NO ONE wants to hear it!

I'm getting so so depressed. There just doesn't seem to be a light at the end of the tunnel. Everyday is spent in pain, and doctors just really don't care. It's so frustrating. Right now my appendix is inflammed. They can't decide what to do with me. Have any of you had to have just your appendix removed?

They can't get my Crohns in check. I have bad reactions to the steroids and I end up back in the hospital because my heart is barely beating. I'm scared. I need the next course of action. Since my doctors don't seem to want to help, maybe you all know what I should be taking next? LOL

I have 2 kids that I have a VERY difficult time caring for when I'm like this, and a job I MUST go to becuase if I don't...the mortgage does't get paid. Life is basically HELL. I'm normally a very upbeat person. No one wants to be around me...hell, I don't even want to be around ME!

Hi Amanda and welcome to the group. Yes you are very right about all of us dealing with the same issues. Doctors just seem to think we can the take the pain and go on. You are unfortuantely are going to have to be the one that takes charge. Demand that something be done. Once they realize you mean business they may listen. When you deal with crohns your life can become a battle not only trying to stay healthy but also sane from getting proper care. I don't know what steroid you used, prednisone or entocort? Or any other meds they have tried. Some of the meds work for some of us and others have to use other meds. I did have my appendix removed during surgery for a blockage. If you aren't getting any satisfaction from your current GI find another. You are a real person with a real disease and someone needs to do something for you. So get your self mad if you have to and demand something be done. Please let us know how you're doing. We're glad you're with us and this is a good place to come and cope with all the realities of crohns. Hang in there..

Post edited by: libit, at: 10/24/2009 03:21 PM

Hi, Amanda! In trying to get me off of the steroids, my doctor put me on Mercaptopurine, which is actually a cancer drug, but is also used for Crohn's. He also told me to try taking Align (over the counter med; decently expensive!). Not sure which one is working, but something is going right for a change. Ask your dr. about the Mercaptopurine. Also try for a young dr who might be more open to new things. My old dr. retired, and it was the best thing that has happened for me! Don't get too down - things really can get better!!!! My family are great, but my real honest support with no demands comes from girlfriends. When I'm doing well, my family expects things to be "normal", which is how I would like them to be, too.

Well I've tried both Entocort and prednisone. Amazingly enough...I'm the probably one in a million people who had almost allergic reactions to it. Sooo now I wait. I had another catscan on Tuesday because of the inflammation they saw in my appendix during an ultrasound. And if you can believe it...no one called me back yet! I'm amazed that a person can live in THIS MUCH pain, and it's ok? Should I just expect to be in pain? I'm in the process of trying to find a new GI. I'm waiting for my records to be mailed to me. This is my second GI doctor and they have both well...sucked!

But seriously??? If you have Crohns...should you just expect pain? Do you deal with it, or harrass the doctors til they help you? When I call and tell them I'm in alot of pain it's like "Well yeah, you have Crohns...duh." So how do you know when to get to the hospital? I'm having this weird burning...almost tearing feeling in my side the past couple days, and I'm so dizzy! I'm afraid to go to the ER, they will keep me! LOL I NEED to get through Halloween for my kids! But thanks so much for the input. It's nice to chat with people who understand.

You had a CT scan on Tuesday and no one has called you back? You defnitely need to see someone who is capable of placing a call to you on your results. I went thru 2 idiots that called themselves GIs. Its a wonder I'm not dead because of their incompetence. Now if my GI doesn't listen or the nurse says she can't squeeze me until next week I plan on heading to the ER. I pay for their services and if they aren't capable of taking care of me I will find someone who will. I have been lucky the last time I went to the ER the attending Er Doctor was completely compassionate about crohns and one of the nurses her Mother suffered from crohns. So I kind of got the royal treatment and it was a blessing in disguise that I picked that day to make myself go to the ER. Pain unfortunately comes along with crohns. We become so accustomed to pain that our tolerance becomes very high. We just learn to figure out what is serious pain is from regular pain.

My doctors office finally called me back this morning after a week of waiting. They did the cat scan to make sure I didn't need my appendix removed. Then she says ok...see you in 3 months! I said "Really?" What about the pain I'm in DAILY and the fact that all I'm taking is Asacol which isn't even working anymore? She sighs and says "Amanda people with Crohns have to go through this all the time. They are ALL in pain." So I say "So what you're telling me is...I just have to deal with it?" Since I'm not bleeding rectally right now, I'm ok? If I make it through the day verticle, it's a miracle!! These people are making me CRAZY!!! She sighs(again)and says "I'll leave the record on his desk...it's all I can do".

I can tell when I need to get to the ER USUALLY...but I'm paranoid about going (it always turns into a week long stay). I'm NOT a fan of the hospital! LOL I'm sure you all feel the same. UGH! It's just SO frustrating!! Why can't they call me back! It makes it so I don't even WANT to go back. They are dragging their heels getting me my records as well. ERRRRRRRRRRRR They make me want to scream! And as you all know...A stressed out Crohns patient is NOT good! LOL And on top of that...I'm a redhead! I'm about to climb through that phone and wring her neck!

WHEW! That felt good...thanks for letting me vent!! LOL

Anytime!!

I am very sorry that you are having so much pain and such a tough time.