- Joined
- Jun 30, 2012
- Messages
- 1
I am hoping many of you will read this and have either comforting words or answers. I am 22 years old this year. Last year was the worst year of my life. I have a wonderful support system, including family and the best guy I could ask for. The story I am writing here is excluding a lot of other things that went on last year that were just devastating. I was diagnosed with crohns near the end of February, 2011. By this time I had been having bad experiences in the bathroom for a couple of years, but barely ever any pain. My doctor did a colonoscopy and told me I had a severe case and that he was very surprised I hadn't been in very bad pain. He showed me the pictures of the ulcers all over my small intestine...:ywow: We started me on Pentasa (500 mg, 8 a day---I only take 6, though, which he said should be fine-I always forgot to take 2 in the middle of the day) and humira. My parents cringed and I cried when I would get the shots...the burning was horrible, but I got used to it. It wasn't working well though (I'm sure a part of it not working well was me not yet realizing what a big role this disease would play on my eating habits). The only thing that seemed to help on and off was prednisone (I've never been more insecure then during those times--My face was bigger than a basketball, I craved everything in sight and gained weight). During that summer (late July, August) the crohns had gotten bad enough that it stopped normal digestion of my antidepressant-it was like going cold turkey off of something I had been on since 9 yrs of age. I was in a comatose state for weeks, it was the worst experience of my life, I saw no point in living, I felt dead. We finally found a compounding pharmacy to make my medicine in to a liquid, which got it in to my system again. There were a couple of times during this year (before September) where I had to go get potassium infusions. I was just very, very sick. And so weak. In September I had to have emergency open heart surgery (they saw what they thought was a tear in my aorta, but they could not find it after they looked). I had just gone in to the cardiologist to see about my rapid heart rate...then it all went down hill from there. After the surgery, my heart rate was still excessive, so now they have me on a small dose of a beta blocker. My doctor switched me to remicade and I am currently taking CLA supplements, prenatal vitamin, Vitamin, B, Vitamin D, Calcium, and Potassium. Still taking the Pentasa. I've also completely given up dairy (okay, I confess I mess up a little bit sometimes..) and I definitely eat way better than I used to.I am on and off entocort depending on my flare-ups. I can no longer take prednisone because I have developed cataracts in both eyes (yeah...at this age, seriously?) After the surgery I had another stay in the hospital for a really bad flare-up. Pain meds for about a week in the hospital. I also had C-diff for a little bit, which of course was horrible.
I find myself constantly wondering about my future...I also think I may need a different Anti-depressant. I cry a lot feeling sorry for myself and all that I have been through, but I just can't help it. My doctor said there is a test he could do to show how my disease will go for the next 5 years but he says he doesn't want to do that for my case because he already knows my case is severe and it will take a long while for remission. He says surgery would not really help my case. I have seen several doctors in that same practice.
I worry about carrying a full time job when I finish school, especially with how weak I can get throughout each month. I also want to have children but I do not want to pass this on...or my depression and anxiety issues. I just feel like I am at such a hard place in my life right now and I just want everything to calm down for just a while. I feel like this past year has turned me into an 'old soul', if you know what I mean. I take life more seriously, and I just look at so much of the bad and barely any of the good. I am currently working on finding more of my trigger foods. I'm drinking a lot of powerade for the electrolytes. I'm going to work on eating better...I just have to. I'm pretty much terrified of life right now and how mine will turn out. I haven't been on the entocort in awhile but other then a couple of bad nights (I've fallen to the floor in pain a couple of times and 'messed' the bed a few times in the past couple of months-I've got a waterproof mattress pad now).
I'm just so frustrated. I'm frustrated because I'm the black sheep of the family-we think the first to get it, because I have a waterproof mattress on my bed, because I have cataracts at this age, because I have way too many worries for someone young. But, I have to just get over it. It's life.
Well, that's all. I hope you all were able to read it without falling asleep-sorry about the length! Any comments or questions are completely welcome and I am willing to talk to anyone one-on-one through here or email. I hope this makes things easier, finally talking to others in my situation is already making me feel a little better.
Kendra
I find myself constantly wondering about my future...I also think I may need a different Anti-depressant. I cry a lot feeling sorry for myself and all that I have been through, but I just can't help it. My doctor said there is a test he could do to show how my disease will go for the next 5 years but he says he doesn't want to do that for my case because he already knows my case is severe and it will take a long while for remission. He says surgery would not really help my case. I have seen several doctors in that same practice.
I worry about carrying a full time job when I finish school, especially with how weak I can get throughout each month. I also want to have children but I do not want to pass this on...or my depression and anxiety issues. I just feel like I am at such a hard place in my life right now and I just want everything to calm down for just a while. I feel like this past year has turned me into an 'old soul', if you know what I mean. I take life more seriously, and I just look at so much of the bad and barely any of the good. I am currently working on finding more of my trigger foods. I'm drinking a lot of powerade for the electrolytes. I'm going to work on eating better...I just have to. I'm pretty much terrified of life right now and how mine will turn out. I haven't been on the entocort in awhile but other then a couple of bad nights (I've fallen to the floor in pain a couple of times and 'messed' the bed a few times in the past couple of months-I've got a waterproof mattress pad now).
I'm just so frustrated. I'm frustrated because I'm the black sheep of the family-we think the first to get it, because I have a waterproof mattress on my bed, because I have cataracts at this age, because I have way too many worries for someone young. But, I have to just get over it. It's life.
Well, that's all. I hope you all were able to read it without falling asleep-sorry about the length! Any comments or questions are completely welcome and I am willing to talk to anyone one-on-one through here or email. I hope this makes things easier, finally talking to others in my situation is already making me feel a little better.
Kendra
You poor thing, I'm so sorry. 
