Hi My name is Momof girls,
I signed up with this forum a couple weeks ago, but did not feel like introducing myself at the time. I actually feeling sorry for myself again, something I wish I could stop doing because after reading what other Crohnies are going thru, I feel bad.
I am going to start at the beginning. I was diagnosed with Crohn's in 1988, 5 months after I had married my Prince Charming. I was also in college for nursing at the time. I actually was sick the whole 2 years I dated my husband. My symptoms included, feeling full after eating two bites of a sandwich, having sever abdominal pain which I couldn't do anything when the pain was occuring but hold my stomach. I also was losing weight, but that I didn't notice. It actually took the whole 2 years of complaining to various internal medicine doctors about the pain, diarrhea and feeling full all the time for them to tell me that this is what stress is because I was working and going to school full time. I was admitted once with a diagnosis of pelvic inflammatory disease, the antibiotics made me feel good and so did the pain medication, so I thought that must be what is wrong with me. The next time the pain got unbearable and I was having that extreme pain in my abdomen, I went to my gynecologist. He ended up doing a laporoscopy to see if I had any ovarin cysts or scaring in my pelvic area. When I awoke, hoping to hear that something was actually wrong with me and I was not making it up, the gyn doctor told me he found a tiny ovarian cyst whch couldn't cause weight loss, abd pain that bad or issues with my eating.
I was very upset because there was no answer for me, and everytime I said my stomach hurt, my just married husband would point to his head as if I was just making it up. At this time, I was also having periods of incontinence of stool at nite, talk about mortifying. I was only 21 years old, my husband was joking with me and kept saying he was not ready for depends for me. I then went to a local GI doctor and explained my symptoms, before any tests or anything he made a comment about stress since I was in school full time and working. The next week he did a sigmoidoscopy, and told me everything was ok and that what I needed to do was eat more fiber. He suggested Metamucil in water, just wanting to be over with the pain and diarrhea, and start eating normal and not be bloated with my stomach feeling like someone beat me up everynite. My stomach felt like someone was hurting me and it was so sore it could not be touched. I took the Metamucil like the GI said and I didn't feel anything for about 2 hours, then I thought someone was putting a knife in my stomach and twisting it. about a week later after complaining that this didn't work, I went back to my incompetent internal medicine doctor, he ordered a CT scan of my chest, abdominal and pelvis and of course just to torture me a Barium enema. I got the results of this test in about a week, I was still in agony, having a great deal of pain and by this time I was so weak I couldn't even stand to shower.
I decided to call my Gynecologist, because I felt horrible and was having chills and couldn't focus, I took my temperature and it read on a regular mercury thermomether that my temp. was 105.2. When I told the office staff that this was my temp, they said there was no way this could be, I wouldn't be responsive enough to talk. They did say to come in. The doctor took my temperature 3 times in his office and finally asked me anything else you are not telling me. I said to him I told you I can't eat, I go to the bathroom all the time and my stomach is killing me. The Gyn called his friend in the office he was in that was a GI doc and walked me to his office. The first thing I said to the new GI doctor was please do not tell me this is stress. He listened to everything I said to him, then he said to me I think you might have Crohn's disease, however we have to admit you for antibiotics because I think you might have a blood infection and we will do some more tests and find out exactly what is wrong with you.
I took an ambulance to the hospital because the doctor did not want me driving home, he called my husband and told him I was being admitted. In 2 days I was feeling a little better, I was on clear liquids, then given a gallon prep of something called GoLytely which I could barely drink 2 cups before vommitting. The GI was great told me I did not have to finish it since I had diarrhea for so long. When I woke up for the colonoscopy, I found out that the GI doctor took biopsies from the part of the terminal illeum he could reach, he said the scope could barely fit the scope because it was so inflammed. I also then had a upper GI with a small bowel follow-through. The doctor then told my husband and I that I had Crohn's in my terminal illeum which extended up 4 ft into my small bowel. I asked him if this could have happened in 2 weeks because the CT scan I had 2 weeks ago was normal, he could not answer that. I am sorry this is so long. This started my life with Crohns, I have had 5 small bowel resections since that time, mostly for strictures. I tried Remicaide, my body heals to well with Remacaide because I end up getting strictures. I have been on 6-MP, asocol, Tylenol with codeine, Immodium, methotrexate which I can never take again because I ended up getting pnemanititis with that which Dr. Marion a specialist in the city never saw, only heard it can happen. Of course, Methtrexate did help my bowels, I just couldn't breathe and had fevers. I have also tried Humira, I dept getting burning in my face with that and then got pneumonia every 2 months for 3 times. The doctor did a CT scan of my chest and my lymph nodes were so big, they thought I had a lymphoma. Thankfully, after having a mediastinoscopy in which they biopsied all the enlarged lymph nodes in my chest and behind my heart the told me I have sardoidosis in my lungs, skin and kidneys. Again sorry this is long. As of March 15th 2010, I have been on sick leave due to abdominal pain, weight loss and fatigue. Everytime I start to work part time or full time, I am a clinical nurse coordinator for Breast Cancer, a job which I happen to love, I get sick. I can't eat at work due to the pain. I have a hard time going to the Bathroom at work, so I try to hold it and then have even more pain. My husband who stuck with me for the past 22 years now has a genetic muscle disease called Inclusion Body Myopathy and is on permanent disability because he cannot walk down stairs, he can not lift his legs into bed, needs a scooter chair outside because he falls very easily. His upper body is very weak, he can not lift his arms higher that his chest level. I do not what to do, right now I am home, feeling a little better, however the pain never goes away. I get hungry and am afraid to eat sometimes, other times I take a pain pill and eat. Thanks to everyone who read this, I had to get this off my chest. I have also been diagnosed with hypothyroidism, anxiety and depression.
My currnent meds are Cellcept 3000 mg a day, Immodium as needed, Tincture of Opium (also for diarrhea) as needed, Fentanyl patch, oxycodone, Xanax, and Effexor