I was diagnosed with Crohns when I was 27 years old. My symptoms came on strong and with no answers from doctors. At the time my husband was still in collage and we had two small girls. I was very frustrated because I had no insurance and could not get into see a G.I. doctor without $300.00 in hand each time. I was afraid to be alone because I did not know what was wrong and I was really afraid of what would happen if I was. I could hardly get myself out of bed and when I did most of my time was spent in the bathroom. I was bleeding and vomiting and sooo scared! I went to the emergency room multiple times with inapropriate comments about my symtoms from the physician and sent home with yet again no answers and getting sicker still daily. This went on untill I was eventually hospitlized for 14 days and diagnosed with Crohns. I was working in dentistry full time and loved what I went to school to do. Unfortunatlly that became very hard to continue doing. My employer was very understanding and I was able to cut my hours to about 20/ wk. Still sick still no meds that worked for me... This went on for about 5 months and untill my husband finished school and we had insurance!! I thought I would finally get HELP. I tried medication after medication and non of them worked. Asacol, Azsulfadine, methatrexate, imuran,and some I can't even remember. I had fevers up to 104 and hives. So many allergic reactions and so many medications that I could not use. My doctors just kept coming to the conclusion that my Crohns is "nonresponsive" to the medications they had for me. I then had and unplanned pregnancy and began to feel so much better. Yeah! I wished I could be pregnant forever. (how crazy does that sound?) I had another beautiful daughter and after about a year it was back with a vengance. :ymad: I was almost 29 at this point and had a team of doctors that were becoming as frustrated as myself. So I saw doctors at the University of Washington and Virginia Mason I did everything they recomended. I then began to have joint swelling that I had experienced as a adolesant. The fluid in my knees was krippling and soon I quit my job at the dentist office.(no more helping others to "SMILE") I started to work at the school district with kids and became almost as happy with my work as I was at the dentist office. I was on high doses of predisone 60-80mg/day. Yuck! We all know what that does to us... My doctors began to work together using immune supressant meds,Enbrel and other TNF blockers. I began spiking fevers again, my white count was shot. I was in the hospital about five or six times a year at this point and my joints were out of control. Doctors said no more work. Ouch, that was hard to hear! I was told I was a "spore for infection". I was depressed sick and did not know what was in my future.....I soon realized my future would be full of doctors offices and a lot of time searching the net for all of the information I could find. I decided to try Remicade I was excited I thought this was going to be the "one". I started the infusion but I kept having blood count issues. Why me? I had to put infusions on hold because of my white counts, poor iron the need for blood transfusions. Can this get any worse I thouhgt? I finally got strong enough that I could start Remicade again. Not so fast though I needed to premedicate to avoid the chance of serious reaction. But.. that did not do the trick instead I had an anaphylactic (sp) reaction. Scary!! Now what? My team of two different G.I. doctors in two towns my hematologist, rhumatolagist, and GP decided that I needed to go to Chicago or California to see a doctor that sees the toughest cases in the country. Getting MORE depressed and hopeless I said yes.. So I went to Ceder Syani. Please forgive my spelling.
He said I was going to need surgery. I new that was coming after doing all of the reading on line that I had done. So back to Washington and to the surgeon. That was a hard surgery 6.5 hours later and lots of staples and stitches I had six inches of my small intestine and everything ealse down was removed... Ileostomy! I was struggling to heal and to get going again. I was in and out of the hosp. after my surgery because things were just not right! (of course not) So after months of pain and not healing they realized that during surgery they cut a hole into the vaginal wall and it would not heal. I had a very large abcese in my abdominal area from the surgery... It was a long road but after about 1 year I was feeling great and NO signs of crohns. That was about 2years ago. Yeah!! I have been taking Thalomide for mait. untill I started having neroupithy (spelling) in my feet and up my lower legs. I was starting to take off the weight that I had gained from steroids. Untill (there is that word again) three months ago I started to have swelling in my knees and I was feeling very worn out. I started to have a chronic sore throat and eventually I could not eat at all. I was put in the hosp. another endoscopy along with many other test I found out my crohns is active again. It is now in my stomach, esoghagus, and mouth. I have started Humaira 160mg loading dose 80mg every other week.. I have been feeling better but I saw my doctor today because I had a steroid shot in my knee last week and it did not help with the swelling so now they are saying the Humaira is failing. They said Cimzia is next.... ( If insurance says it's ok)
:depressed: I am starting to get to the end of choices when it comes to medication. I am scared and tired of adding to my medication list that is 17 meds long already.....
p.s.
I did try naturapathic medacine and organic diet at one point along the way. Sorry if this sounds like a giant sob story. It just seems that once I started to tell my story it just poured out along with tears. This was one of the hardest things I have ever done. Thank you all for the space here to spill all of this out.
He said I was going to need surgery. I new that was coming after doing all of the reading on line that I had done. So back to Washington and to the surgeon. That was a hard surgery 6.5 hours later and lots of staples and stitches I had six inches of my small intestine and everything ealse down was removed... Ileostomy! I was struggling to heal and to get going again. I was in and out of the hosp. after my surgery because things were just not right! (of course not) So after months of pain and not healing they realized that during surgery they cut a hole into the vaginal wall and it would not heal. I had a very large abcese in my abdominal area from the surgery... It was a long road but after about 1 year I was feeling great and NO signs of crohns. That was about 2years ago. Yeah!! I have been taking Thalomide for mait. untill I started having neroupithy (spelling) in my feet and up my lower legs. I was starting to take off the weight that I had gained from steroids. Untill (there is that word again) three months ago I started to have swelling in my knees and I was feeling very worn out. I started to have a chronic sore throat and eventually I could not eat at all. I was put in the hosp. another endoscopy along with many other test I found out my crohns is active again. It is now in my stomach, esoghagus, and mouth. I have started Humaira 160mg loading dose 80mg every other week.. I have been feeling better but I saw my doctor today because I had a steroid shot in my knee last week and it did not help with the swelling so now they are saying the Humaira is failing. They said Cimzia is next.... ( If insurance says it's ok) :depressed: I am starting to get to the end of choices when it comes to medication. I am scared and tired of adding to my medication list that is 17 meds long already.....
p.s.
I did try naturapathic medacine and organic diet at one point along the way. Sorry if this sounds like a giant sob story. It just seems that once I started to tell my story it just poured out along with tears. This was one of the hardest things I have ever done. Thank you all for the space here to spill all of this out.
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