2nd bowel resection with my Crohn's, Why don't my MD's listen to me?

by Linda Velasquez
(Lakewood, Washington)

A beautiful fairy

My life with Crohn's Disease:
A note from a tired,frightened,exasperated,and frustrated patient, Mom, Grandma, Wife, Daughter and Nurse. So here goes! I am going to vent on my recent issues and area's of concern. Should anyone out there have suggestions, believe me I am up for it!

I am tired all the time. 24/7 In fact it's about 5am and I want to sleep really bad But, I can't it will not come, then my legs jerk and spasm it may hurt for hours! I take miripex but it doesn't always work. So bear with me, please and here I go. I am going to speak freely on my issues. Maybe, if I do let it out I won't cry so frequently or easily.

I am in pain 24 hours a day, and not just my bowels. I had my second Surgery July 28th 2009.
I am now the proud Crohn's victim that has about 20 painful bowel movements of colored water a day, even the length of my rectum hurts. (They removed 2 feet of bowel after spending several hours on removing adhesions on the small intestines a 2 1/2 hour surgery lasted 7 1/2 hours with two surgeons) The new fistula in my abdomen isn't so bad but, as of yesterday I can smell infection and feel a difference in there. The opening is decreasing everyday. I can see my belly button, it's back! Even though I have had pus daily since my abdomen erupted 10 days after surgery, it never smelled like it does now. It may be the two fistula's that I can still feel under my skin, and the arthritis I have in my joints and back that are causing a lot of the pain. Depression makes pain worse, I am told.

Sometimes I can not get re-positioned myself or get up out of bed, off of a chair, or the couch, and never do I kneel. If I do, I get "stuck" and set into a panic as I grab on anything to pull myself up with fear and a lot of difficulty.

My memory continues to decrease. It terrifies me. I can not find where I parked the car. I forget where I am going in and out of the house, and the conversation I am having. Last Friday I lost my husbands bank card and have no idea how, he was so angry, he did not speak to me for 4 hours.

Then I go to our room for medications and find that someone has stolen all my pain pills (Percocet 38 tabs)that I had just picked up that day! Living with nine people and their friends coming and going, leaves no privacy and a number of possible thieves.Try getting more narcotics from your HMO or MD? Once they are prescribed and you will become addicted to them,if not the "need" but your body will throw jarring fits if you attempt to stop!

Shame on all of the medical staff, Doctors who think they know my body better than me! Ha! They never listen anyway, they smile pat me on the back tell me it gets better and go on their merry way. You know we are only scheduled for 15 minutes and 10 minutes is spent reviewing my medication list! They answer all the questions themselves and easily change the subject. This occurs from your Primary care provider to your surgeon and even your Digestive health Specialist.

Oral medications are no longer effective (I hate prednisone!). Fish oil did help the arthritis! It's just that when I opened my mouth to breathe, I could taste fish! Nasty! Remicade (5 years now)is awesome it alleviates the diarrhea (no one could take paregoric daily!) and makes me feel stronger but, it causes me to pick up every possible infection! Upper respiratory infections, Urinary tract infections and wounds (cat scratches, dog induced bruises do not heal for weeks or months.

I am so tired, Trazodone, prescribed since 1998 is now at 300 mg at bedtime. It no longer works even when I take a drug holiday for a month or so. Depression? Yep, I have that and 450 mg of Venalafaxine a day barely keeps me from falling into that deep black hole that I have found before.

Finally, Something happened on my last hospital stay. I of course had pneumonia within 24 hours of surgery, (OK par for my course). Unfortunately this was new my oxygen saturation level went down in the 40's. O2 at 3 liters kept me at about 83%. Never liking anything on my face, when sleeping I would remove the oxygen. I do not know what I did but, I remember lots of people in my room that night and Jan my nurse yelling my name from the head of the bed asking me "Linda do you know that you have episodes of confusion?" Yeah, I did. Since I had been in the hospital. Sometimes at home, I would awaken from a dream after I had sat up and was conversing with the person in my dream. In fact, my husband has had more than one bloody nose in the last 10 years! He said I fought for the first 6 nights after I came home this time. I ended up leaving two days before internal medicine wanted me too, but my surgeon agreed with the Nurse. (mind you, she had awakened me that morning with new rules...I would not remove my oxygen without asking. "I would not touch my IV pump, I would remain in my bed unless I asked for assistance, and it would be better for everyone if I just went home!" and being a smoker (shame on me-they refused to fill my patches while there) (I had already been walking the hospital floors for 7 days and now I was to remain in bed and in my room unless accompanied by an aide!)
All the bullshit, all the lies, treating me as an ignorant child and I am a nurse, they still wouldn't tell me what I did! I know patient rights and it was all so wrong! I know nursing, I know lingo and I know Doctor's and Nurse's are just human beings..like me.
So now, what do I do? I am humiliated, very tired, really sad, in pain and my Primary Care Doctor of 4 years joins the Air Force! You really ought to meet the new one's! I am at a loss for words! Mention pain medications! Go ahead everyone's voice, and body language changes! Medical staff, Pharmacists, Doctor's, Nurse's and the Administrator of the clinic I attend all become rude and argumentative, in fact any medical personnel does, including customer services, when you attempt to file a request for help and intervention to obtain proper and timely medication. So go ahead, live this life! I would be very concerned for you...Stress? yeah a little reduced to have of our normal income we take on a homeless teenager, my son's 17 and 22 argue about anything and everything! Especially doing any housework! My 31 year old Daughter loses her job and apartment and returns to the nest with my angry 12 and 13 year old Grandsons and her 24 year old boyfriend. In the last six years she has returned a few times to live with us 3 and 1/2 of those years. She hates my husband argues with everyone and is now refusing to look for a job! All of the bills have at least doubled!

By the way, I am only 49 years old and feel like I am 80.. Any suggestions, other than run away. I have too many repairs due to this house, caused by my children and my elderly Mother now owns the house. I could never just walk away.