Join Date: Apr 2008
Location: Albuquerque, NM
Crohns Disease - My story...
This site has been so helpful in helping me understand that even though I am new to all of this....I am certainly not alone!
First, I am female, 36 years old.
About 4 or 5 years ago I started losing alot of weight pretty rapidly. Diarreah has always been around, about 5-7 times a day, but I never knew that it was a "problem". People would tell me I "looked sick" or would ask if I was anemic. I could only eat small portions at a time (like a kids meal) several times a day.
In October 2006, 3 months after my fourth child was born, I became very ill. Unbelievably painful cramping in my lower abdomen on the right side. I was hunched over in bed for about 8 hours. I thought, Im just constipated, it will pass. Then the nausea started...not long after, the vomiting began.....and would not stop. When my husband came home from work, he rushed me to the er.
The next 10 hours consisted of x-rays, ct scans, lots of bloodwork, and finally being admitted for being "very ill". I was confused....I was just constipated.... After 3 days, I was released with prescripts for flagyl, cipro and prednisone and instructions to see a GI.
My GI appointment was two weeks later. It was a simple..."this could be a number of things that are going on..." (no real explanation) "start taking pepcid ac once a day, an outrageous amount of Pentasa and start tapering off the prednisone".
December 2006, I am laid off from my job, insurance ends at the end of the month. The same symptoms come back, and back to the hospital I go. Ten days this time with daily x-rays and numerous ct scans. Ulcerative colitis or Crohns Disease is suspected. I was released on New Years Eve. My colonoscopy is scheduled for mid January. Due to lack of insurance, I did not go! I intended on taking the medications still, but Pentasa turned out to be CRAZY expensive! I continued on the prednisone for the next several months, then, carefully tapering myself off until I ran out of refills.
October 2007, cramping, nausea and vomiting came back and I find myself back in the hospital. (I have a new job now, so new insurance, along with new hospital and new doctors). I had my first colonoscopy and was told I had Crohns Disease, more specifically Crohns Ileum. The doctors reconfirmed the diagnosis and location with a barium x-ray (upper GI screening). I am finally sent home with new script for prednisone 60mg, Azathioprine 25mg (low dose due to infavorable blood screening), and Asacol-12 a day! (btw, the asacol comes out whole!) I am also on a low fiber diet...basically, anything that is supposed to be "good" for your digestive system, is not good for mine!
December 2007, the symptoms came back, again, so back to the ER. I have now learned that if you tell them in triage that you have Crohns disease, they will take you much quicker! GI believes the Azathioprine is too low of a dose but is hesitant to raise it due to my bloodwork showing I already have a low white blood cell and platelet count. Its time now to decide on a new plan of attack...
January 15, 2008, I begin taking Humira. Within 24 hours, I developed severe itching...all over...no rash, no difficulty breathing, just skin crawling itching. Doctor believes it was a mild reaction to the large "starter" dose. He prescribes anti-itch cream and pills. The itching subsided in about 3-4 days. I took my second dose, as prescribed, two weeks later. No itching!! I had the first "normal" BM in....who knows how many years! I am very optimisitic!
March 25, 2008, the pain in my abdomen has returned, severely! The nausea is back. The diarreah had been back for a couple weeks now, but not as often...but, today, nothing! I went back to the er before the vomiting began. The bloodwork could not confirm a flare up, but the x-ray showed a partial obstruction. GI says it is now time for surgery to remove the damaged ileum. Scar tissue has formed narrowing my small bowel.
Today, I am anticipating my small bowel resection on April 22, 2008. Thats how I ended up here. Looking for everyone elses stories of trials and tribulations. I wanted to find out from others how long their hospital stay was, how long it took them to recover, and when did they return to work. Having had gall bladder surgery some 19 years ago, I can mostly remember the pain of sitting up, laying down, coughing, even breathing hurt! I never wished that type of surgery on anyone, and now I find myself in a similar situation. You dont realize how much you use your stomach muscles until you have an incision on them! I am nervous, but not scared. I am still the optimist though! I look forward to being able to eat fruits and vegetables again!
Thank you to everyone who have posted their stories! I think it truly helps everyone to "compare" notes and know they are not alone!