Falling apart
Tue, September 13, 2011 8:35 AM
I am not coping very well with my first flare-up in three years. I was diagnosed with proctitis ten years ago. This flare-up started in April and it seemed that hydrocortisone rectal suspensions were getting it under control, until August, when I suddenly started experiencing bouts of 3 hour bathroom episodes with extreme pain. Worse, these bouts are entirely random. I can go a week with relatively no pain and little time spent in the bathroom and then suddenly I can't leave the bathroom, am throwing up from the pain, and have to take a pain pill (I actually have high pain tolerance, so having to take a pain pill seems a huge deal to me) and call off work.
I worry almost constantly about my job. I take a lot of pride in doing a great job and two weeks ago was reassigned to a job I am really excited about. But, now I have had to explain my condition to a whole new group of people. I have had to miss 4 days in two weeks. I worry that my new boss must think he had a complete loser pawned off on him.
I decided that I needed to get a different medication. My GI refused to see me, and said I had to wait until my regularly scheduled 9/20 appointment, because he is just very busy. They called in a mesalamine rectal suspension, instead. I have taken that for two weeks.
Last week, I soiled myself for the first time ever, and found myself feeling grateful it was in my car and not in public. Then, I got angry that my life has gotten so awful I was HAPPY I had soiled myself in a secluded spot.
I went in to see my general doctor, because I realized I now have an infection on top of everything else. I had a breakdown there and started to cry. She told me I needed to take 3 days off and get myself calmed down. She gave me a subscription for Xanax to take on bad days. She said I must stop worrying so much about my job, as I am protected under FMLA. Today, I was in the bathroom 3 hours again. I just can't stop focusing on how useless I feel.
bluskyeJoined May 18, 2011
Fri, September 23, 2011 9:27 AM
Reply posted for BluSkye.
I can identify. I "soiled" myself several times in the past few weeks, and it is not only humiliating, it makes one feel incapable of leading a normal life. I suffer from Crohn's disease and my life is far from normal.
I have spent 200+ days in the hospital in the past year. I have lost 52 pounds, and lose on average a pound a day.
All I can say is there is no shame in having a chronic illness. We did not choose this, or can we control it. My doctor's are at a loss as to how to stabilize me, which is frustrating as well as depressing.
Due to my illness, I also suffer from major depressive disorder as well as severe anxiety and panic attacks. I am on several psych meds to help with this.
I have made the decision to go into voluntary psychiatric day treatment to help with my depression, and I hope that this will help in controlling my symptoms as well. I would encourage you to seek psychiatric assistance. There is no shame in counseling, and often if you can manage your emotional well being, your body follows suit.
I will pray for you, and if you would like to reach out to me, please do.
Much love,
Christine
cweitzelJoined Sep 23, 2011
Thu, September 15, 2011 10:53 AM
Reply posted for BluSkye.
I do appreciate the kind words. I was kind of mad when I wrote to this Forum. The Pain has been unbearable. I admire how you want to find a way to fight the pain so you can work. I would try anything but do not know much about Pain Managenment. I did take Vicodin and went to work for a long time. Could function OK but it is addictive.
You sound like you have the same position I have on Doctor's the ego factor is just to much for me. They are always in such a hurry I get frustrated right away. I have lots of questions but I get upset with the Doctor's because they already have in mind what they think and the patient who is suffering knows nothing about it.
I started with Crohn's which led to Primary Sclerosing Cholangitis which is a Bile Duct disease. Auto Immune disease so like Bowel disease you never know when it is going to start up. I get really nervous and stressed a lot thinking about what will happen if I eat something wrong. Diet seems to be something I would like to learn more about. Doctor says it is not important just do not eat things that bother you. I am sure there are better things to eat that would be easier on your system.
Thank's again for the response. Nice to have a conversation with someone that suffers. Not a good situation but most people have no idea what it is like to have a Bowel Disease let alone dealing with the symptoms and the stress, not easy at all.
Joined Nov 16, 2010