My Story

[<3 Mimi <3]

Hi. My name is Mimi. I'm 38 years old. I was diagnosed with crohn's four years ago though I've had symptoms for 17 years. It started when I was 21 and living in a dorm at college. While most college students were having a great time partying and meeting new people, I was stuck in my dorm room vomiting and in pain. It took all the energy I could muster to get ready and go to class. I had to drop out mid-semester because the pain became unbearable. I have even been admitted to hospital many times before I was diagnosed and the only diagnosis they could come up with was "stomach virus". When I was diagnosed in January of 2008, I was put on Pentasa, and it worked really well. It stopped working when I was hospitalized while I was on vacation in florida in 2009. The doctor there recommended remicade. I got my first infusion before I was discharged. Remicade worked like a dream for me until last year when I developed immunity. Then I was put on humira pen. I was started at 20, and I am now taking the maximum dose. It works really well for the crohn's, and I've been flare-up free.... but all the years of having undiagnosed chron's have made scar tissue form in my ileum. I now have what's called a "string" sized opening.
I never thought I'd hate eating, but now i do. I have such pain and swelling, nausea and vomitting that i'd rather not eat. I've even vomited while I was eating. It was really disgusting. :eek2: I was doing well for a while though. I started humira September of last year. It was an awesome drug. I could eat anything I wanted (excluding red meat, garlic, and spicy foods). I was reacquainted with my favorite sugary sweet foods. Chocolate is my weakness. Now, it's really hard for me. I recently had to do a small bowel x-ray. Most people only have to drink one bottle of barium and the x-ray only lasts around an hour. I had to drink 4 bottles. I felt like I was going to vomit every time I took a sip. The x-ray took five and a half hours. I was at the hospital all day. After I was finally able to go, I had to see my doctor to go over the results. He told me that I need to have 8 inches taken out of my terminal ilieum using the laproscopic method. I have other health problems so the surgery will be a lot harder for me. I'm really scared.

 

[Angrybird]

Hello Mimi and welcome to the forum. I am sorry to hear that you are now having to have an operation, do you have a date for this or are you now waiting for a consult with the surgeon? I myself have now had an op via key hole surgery and it did go a lot better than I expected but I too was very worried about it beforehand. I just tried to remember that whilst this would not sure the crohns it would at least get rid of the stricture which for me was more painful to deal with than the op itself.

I also started having a lot of problems with eating so a so a few weeks before the op I went on Modulen shakes as liquid was the only thing I could have that was mildly tolerable, perhaps it may be worth asking your doc about something like this to help with your symptoms.....

I hope that things go well and that once the narrowing has been removed that the Humira can continue to do the job for you. Pls keep us updated on how you are getting on.

AB
xx

 

[mikeyarmo]

Welcome to the forum Mimi!

My diagnosis/initial suffering also happened while I was starting university. I remember how hard it was to go to school let alone think about socializing so know that you were not alone in that experience!

I had a very similar surgery to what you are scheduled for (4 inches of terminal ileum removed laparoscopically). While everyone will have a different experience, I just wanted you to know that I have been practically Crohn's free since the surgery 6 years ago.

I understand that you are scared and I am sorry that you have other health issues that will make the surgery more difficult. I just want you to know that this same surgery greatly improved the quality of my life to the point where I am pretty much 100% healthy.

Therefore, I hope you can look at this surgery as something that may positively impact you. Please let me know if you have any questions on the surgery or the recovery.

Best of luck and hope to see you around the forum again soon!

-Michael

 

[<3 Mimi <3]

Thanks everyone for your nice comments.

I haven't met with a surgeon yet because I'm undecided about where to go. My mother wants me to go to Mayo in MN, but my doctor wants me to stay and have the surgery at my hometown hospital. I'm just ready to get this whole thing behind me. I worry about it more and more every day.

 

[David]

Hi Mimi and welcome! Thank you for joining and sharing your story. I don't have anything to add to the above wonderful posts but wanted to welcome you and wish you all the best.

*hugs*