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I sent feedback to this forum once before and got great feedback about stress and coping with Bowel Diseases. My PSC came back this spring which constricted my Bile Duct's. This and having Crohn's has led me to a Liver Transplant and now Drain's in my side to keep Bile Duct's open. Reading the story posted about Falling Apart has me questioning the point in fighting a disease with no cure.

I still work and I am lucky in that fact. The part that keeps holding me back is the pain. Doctor's and Hospital's seem to have developed new or changed policies concerning pain. Just tough it out is not what I want to here from my Family, Doctor or a Nurse in a Hospital. You can complain but through the last 5 to 6 months the Pain I have experienced has been much more than I remember in the past. I remember when a Pain Shot or Pain Medication's were no big deal. Now they act like it is a big deal. If you are in pain get the person out of pain. Just the brief periods during a Procedure would I remember not having pain.

Maybe I just see a general lack of compassion anymore from Doctor's and Nurse's or the Ego's on these Doctor's make me want to smack some Doctor's. I really do not see the problem with providing enough Pain Relief to make people not suffer with these diseases.

 Reply posted for alison36.

I agree you need to find a Doctor that you like. My situation was I went to a hospital in Chicago for the Liver Transplant. They actually diagnosed me with Crohns shortly after the Transplant. Between the Bile Flow problem and the Crohns I am feeling all worn out. I have to be treated at the hospital because the town I live in has no hospitals that know about post Transplant people. It is a teaching hospital and you get a different Doctor almost everytime you go. I recently had to have multiple procedures and I could not get any new information until I really complained. I had drains through my Rib Area on my right side and the pain was all the time no sleep and it was really bad when the Crohns symptons were flaring.

Wish I could find a local Gastro Doctor with some feelings for people. I hate to be so Doctor negative but I just think medical people have become kind of blind to people who are suffering.

 Reply posted for vonachens.

I agree with bluesky-finding a good doctor is really important.  Don't be afraid to keep looking until you find a doctor that you feel really comfortable with and treats you like a real human being.  It took me a while to find a good doctor, but now that I have, it's made all the difference-I am in remission for the first time in three years and I'm off of prednisone.  Good luck, I hope things get better very soon!

 Reply posted for BluSkye.

I also wanted to add that it is completely amazing to me that you, who have gone through so much worse than I have, with a liver transplant, are being told to tough things out and I am being told to be a good little girl and take my pain pills and not go to work and stop trying to find ways to manage my pain without narcotics.

 Reply posted for vonachens.

I'm sorry you've experienced an unsympathetic response from medical personnel about the pain you are suffering.  My experience has been the opposite.  I want to "tough out" the pain so that I can go to work, but this particular flare-up I have not been able to do so on the days where I have to go the bathroom for three hours at a time, because the pain just becomes completely unbearable.  My GI, after my colonoscopy, told me that due to the ulcerations being in a complete circular pattern, this is just going to be extremely painful until it is under control.  He told me to just take pain medication when I'm in pain and shrugged off my concern that I would miss quite a lot of work if I am drugged up on narcotics.

This is the second GI I have had and I found that while they are both competent, they seem to have no ability to view me as a person who wants to have a life and needs to work for a living.  They do seem to let their ego into every conversation I have had with them.  The first GI actually said to me, after I tried to talk to him about other hyper-immune system disorders I have had and whether that might make a difference in my case, "I have done thousands of colonoscopies. The chance that your case will be any different than the others is close to zero, so we don't need to have this conversation right now."  He also refused to discuss diet with me and told me I could research it on the internet, if I felt like it, it would have no bearing on anything.  I realized that I was a bleeding colon to him, interchangeable with all the other bleeding colons, and nothing more.

Like you, I feel like there is a lack of compassion out there.  I hoped to find some here and all I have gotten so far was what sounded like a salesperson offering to send me information on a cure my doctors don't know about.  I would suggest if your doctors seem unsympathetic to your pain, that you look into finding doctors who are more caring because you deserve to not suffer needlessly.