New Here, My Story

[Angee]

Hi my name is Angee I am 32 years old and have had Crohn's for 4 years now. I suffered from extreme pain for over a year, and loss most muscle control in my right leg. I kept going to my family doctor and the ER with abdominal pain and other symptoms. No one knew what was wrong. I even had a doctor tell me I was faking pain to get pain meds. Then I woke up one day and I had a hard ball in my lower right side the size of a lemon. My then husband was at work and said as soon as he got home we would go to the ER "again" by this time he pretty much thought I was faking as well. By time he got home 4 hours later the knot had turned to the size of a baseball and got 2 black spots on it. So we got into the car and went to the ER, by time I got there the spots had started leaking. My crohn's had abscessed. they did surgery and removed the abscess. Then after more tests. A colonoscopy and a CT scan they determined I had Crohn's. The surgeon told me I needed more surgery due to A fistula forming and a third of my colon was trashed from the crohn's. But couldn't do that surgery for 1 month so what they had just operated on could heal some. They had me on a wound vac for 2 weeks but had to take it off due to the fistula surfaced in the healing wound and was making it not heal anymore. So into surgery I went. They removed a third of my Colon and some of my small Intestines. After that I felt great, I honestly thought I would never get past all the pain. It is now 2 years later and I am suffering my First flare up. It has been very painful. the GI doctor I go to has me on cancer meds and prednisone and pentasa trying to get it under control before My last option is surgery again. I came here to find others that can relate to what I have went through and might maybe have suggestions and such that might help make what I go through a little less miserable.

 

[misscris]

:welcome: Angee. You've come to the right place. Everybody here knows what you're going through. I had an abcess in the same location you did. Well it sounds like the same location anyway. I started to get weird feelings in my leg as well. By the time I ended up in surgery, I could hardly walk at all. I understand that pain for sure! I hope you get things all under control. Again, welcome.

 

[imisspopcorn]

:welcome:
Welcome to the forum. I am sorry your having another flare. My surgery was about 1 year ago and yes my disease is back. Has your doctor talked to you about Remicade? It is suppose to really help fistulas. Maybe you need to move on to this type of drug. You can search the treatment thread. There is a lot of great info there.
Also, there are alot of great silly things to laugh at that only us crohnies understand. Welcome and I hope you get some relief soon.

 

[Angee]

Thank you.. And yes I have talked to my DR about Remecade but he keeps telling me he wants to use it as a last resort, in the mean time he keeps putting me on prednisone and something called 6mp..and all the while I am always in horrible pain and he says well GI dr's dont normally prescribe pain meds...well I guess he expects me to sit here hurting until he finds something that eventually works I dont know.

 

[imisspopcorn]

Go to your primary doctor and see if you can get something. Darvocet is pretty much the mildest narcotic, and my GI didn't have problems prescribing it. I usually would only take it at night because I have to drive my kids around. I've heard other people say that their GI doc wouldn't prescribe pain meds. I don't get it.

 

[misscris]

My doc gave me Tramadol. I hear a lot of people on here say they use it, so maybe ask your doc about that?

 

[CrohnieCarolyn]

Hmmm sounds like a new doc might be in order - I always got morphine for extreme pain or something almost as powerful and Remicade was suggested right after my surgery - you shouldn't have to suffer this much!!! You might want to get a second opinion..just a thought

 

[Jerman]

welcome to the forum Angee! I had a similar experience with GI docs not wanting to prescribe pain meds, I ended up changing physicians and tried vicodin, tramadol, and even morphine for the pain. I was eating them like candy with minimal relief from the pain. It wasn't until they put me on anti-spasm meds Bentyl, and Nortryptaline. I would not recommend the Nortrip as it has caused hand tremors for me. However, the Bentyl has been a godsend, it has cut my spasm pain in half.
good luck to you I hope you are on your way to feeling much better soon.


:welcome: