In October of 2008 I was diagnosed with CD, after finally going to the ER after months of not being able to get rid of an annoying abdominal pain. I was admitted to the hospital, and sent home with entocort and pentasa. I read somewhere that Pentasa didn't do much anyway, so in a few weeks when I was feeling better, I stopped taking the meds.
I stopped seeing the GI doctor too since I felt better, and had only minor problems with abdominal pain here and there that resolved themselves. I was thinking that my flare was probably a one time deal and that even if I had to deal with it again, it really was such a minor case of CD that I didn't really care if I only dealt with it once every couple of years.
Every once in awhile I'd glance at the CCFA forums and think that I was so glad to not have all of the issues that some others on the site were experiencing.
It wasn't until October 2010 that I had to go back to the hospital for severe abdominal pain. They put me on Entocort and Pentasa again. They also had me on prednisone, and I went home. I had a follow up appointment with the GI doctor, and they were gradually taking me off of the Prednisone and Entocort. I found out then that b/c of a change in insurance, I'd have to find a new doctor. By this time it was close to Thanksgiving 2010, and I scheduled an appointment for the beginning of January with a new GI doctor(lets call them GI 2 bc this starts to get confusing!) . I'd felt sick again when I was done with the steroids, and I called the old GI doctor, thinking that if we came up with a solution on the phone I wouldn't have to pay for an office visit, and could talk to someone who was familiar with me instead of having to explain the whole story to GI 2. He told me to take 9mg of Entocort daily again. Prior to that I had stopped taking the Pentasa again, thinking that it really didn't do anything for me. By Christmas I was in a full flare of CD again, but absolutely refused to go to the hospital, thinking that they'd just keep me from eating, and put me on the meds again, so I just did that myself at home. I felt better for a few days, but by New Years day, my boyfriend drug me back to the hospital bc I wasn't able to stop throwing up. They admitted me to the hospital again. They found that I had abscessed spots on my liver, a fistula, and an obstruction. I was put on prednisone again, put on entocort again, and told to start taking pentasa again. I also had a PICC line put in so that I could take IV Zosyn (an antibiotic) for the liver abscesses. So this time I actually listened and did what I was supposed to. Two weeks later, back in the hospital, and sent home on the same routine. On Valentines day (yeah, my body must just like holidays) I got my PICC line removed. GI 2 saw me for an office visit for the first time, and had me decide which biologic I wanted to be on. I picked Humira because it was the least expensive option for me, and I could do it myself (it's a biweekly injection) at home. I did okay for a couple of weeks, started my Humira at the end of Feb then all through March and April I was in and out of the ER because every night for months I was waking up with pain so bad that I was rolled up in a ball on the floor crying. I barely got any sleep. If I did it was because I was taking pain medicine, and it would last for 4 hours at most. GI 2 wasn't helping me out too much. They told me that the reason my flare ups were so bad now was because of taking myself off the Pentasa back in 2008. I still don't know that I really believe that though. Every time my symptoms flared, they restarted the prednisone, some form of pain medicine(first dilaudid, then oxycontin, then tramadol), and told me that I just needed to give the Humira time to work. I was admitted to the hospital again at the end of April into the beginning of May. They discussed having me do Humira injections weekly instead of biweekly, but in the end just sent me home with more prednisone, continue the biweekly Humira, and Tramadol. I was getting ticked. They weren't helping me, I didn't want to take prescription pain medicine,the Humira wasn't changing anything at all, AND on top of everything else I was racking up medical bills like none other just for them to continue the same cycle over and over again. I was scheduled to have my next appointment with GI 2 on May 20th... which was a Friday. The Monday before that I had called the office of yet another GI group (GI 3 now) who was a much longer drive from my house, but who had done research on CD and I believed they would do more to help me since I felt like I was getting NOWHERE with GI 2. The person who took my call told me that I would need a referral from my current GI doctor. Thursday night, I was getting stressed out about my appointment for the next day with GI 2, and of course the stress exacerbated my symptoms, and I finally decided I wasn't going to wait for the referral, and that night I had my boyfriend drive me to the ER of the hospital where the GI 3 practices. I was admitted to that hospital after they did a CT scan, and then told them everything that led up to where I was at by that point. I stayed in the hospital for about a week, got IV steroids, TPN, and IV antibiotics. The goal was to have surgery to remove the part of my colon that just wasn't healing with the approach taken by GI 2. We were hoping that I would be able to have that section removed, and reattach my large and small intestine, but it didn't work out that way because my tissue wasn't healthy enough, it would have been too risky to reattach at that time, so the unhealthy tissue was cut out, and I now have a temporary ileostomy that allowed the remaining part of my colon to heal completely. I have just recently found out that it did heal, and I will soon be able to go back and have the ileostomy closed. However, since I have had the surgery in May, I have had NO symptoms of my CD whatsoever. I am not on any meds, but I expect to be once I've seen GI 3 for my follow up appointment. I'd like to see if I can try LDN.
I had always been told by the doctors that I saw before that I might notice that certain foods bothered me, but that it was so individualized that there was no diet that they could say was safe for a CD patient, so I never really looked into following any of them until back in March and April when I was in so much pain that I was desperate to find something that worked.... but I was also so sick then that I didn't have the energy to re-evaluate my whole diet. Now that I am feeling so much better, and not having any symptoms, I am seriously considering diets that I have heard will keep IBD symptoms at bay... bc I just don't want to go back to feeling so sick again. In one way it is very hard because of all ot the foods that are eliminated from your diet... but when I try to focus more on what is allowed on the diets, and just ignore the things that are not allowed it makes it a little easier.
In a few weeks I'm expecting to have my ileostomy closed, and I'm hoping that I continue to be healthy and happy. I know now that even though at times the disease is extremely mild, it has the potential to be quite a beast, and I don't want to take my chances with it again.