Kiefer Davis is 60 years old ,living With Crohn’s Disease, he is from Oregon , Let us learn about Kiefer’s life Journey with IBD…
Kiefer’s IBD life did not start with him self , In 1975 his mother was diagnosed with Crohn’s Disease and was given only 6 months to live! She died in 1995. Kiefer says she was a very determined Stubborn women , she fought very hard , R.I.P.
His grandmother also died from Crohn’s. It started out as Crohns then manifested into colon cancer. He remind’s us that “During the old days the only treatment they had for Crohns was Lomotil.”
Both his Mother and Grandmother had most of their small intestines removed. He took care of his mother the last ten years of her life. He says The last year she was alive, the only thing she could eat was peanut butter and avocado sandwiches. Nothing else.
Kiefer was misdiagnosed in 2004 with diverticulitis. For two years he was in and out of hospitals and on all sorts of meds. In 2006 his appendix ruptured. During surgery they SAW the Crohns. Took the appendix out. Kept him in the hospital for 2 weeks to heal and get rid of the infection the Crohns had caused, then went in and took out a huge section of his small intestine.
Kiefer also has two cousins on his mom’s side of the family whom have Crohns and a 3rd was just diagnosed yesterday with it (June 27, 2014).
Kiefer feels “Baffled” by how relevant IBD is in his family.
- How did you feel when you were diagnosed , Were you scared , relieved , confused?
If I hadn’t seen what my mom went through, I would have taken it much more calmly. Once told, I fell apart knowing what my future was going to be. Scared beyond words.
- What was your first treatment ? did you have a choice? did it work well for you ?
First was short term: Prednisone
Second was long term: Asacol
I was on prednisone for the month I was in the hospital and also came down with Cdiff.
My memory of that month is completely fuzzy at best.
Once I got home, the Asacol (16 pills a day) seemed to feel like it helped soothe my “innards” a little.
- What do you think of medications? do you feel they are worth the risk or do you worry a lot about the long term side effects?
Well here is the rub for me.
As of now (however they are looking into a new trial of a fix to this problem) I cannot take any of the main Crohns medications.
My mother had TB which means I’m a TB carrier. Being a TB carrier, we can’t take the main Crohns meds as they alter the dormant TB and make it active.So I really don’t want to have Crohns and TB.
I’m going to a major training hospital in the Pacific Northwest in mid July for testing to see if I would be a good candidate for the TB trial.
The outcome that they are looking for is to “find” the dormant TB virus in me …Kill it , and then get me on major Crohns meds.I have no idea how it’s going to turn out.
- What does your diet consist of? In your opinion, is diet a manger factor with IBD? , on a scale of 1 to 10 (10 being very much so ) where would you rank diet in the importance of IBD management?
Diet is a 10
You absolutely HAVE to take care of your Crohns no matter what stage you’re in, no matter how horrible you feel. And trust me, the thought of “well this 1 little bag of popcorn can’t hurt me THAT bad”, is one of the many mistakes that Crohns patients make.
My diet is ALL small portioned:
Meat (well done)
That’s it. Same thing happened to my mom. As the Crohns progressed, little by little the foods we were able to eat, start falling off the menu.
- Do you have someone to turn to? family , friends to vent or were you or did you feel alone?
I stay silent except for the group I got kicked out of for my post the other day. Now I am definitely silent.
(there was a question on the support page “Crohn’s Disease” on Facebook” along the lines of is “IBD terminal” , Kiefer ,as we learned from is Bio , has dealt with the fatal side of IBD he expressed he’s feeling toward the issue very straight forward and bluntly, rubbing some other group members the wrong way, leading to him being removed from the group, I personally saw the post ,read it , and feel he did nothing wrong, I do hope they allow him back on the group.)
My wife goes with me to every doctors appointment. She knows everything. I won’t talk about it though.
We have been through too much hell in our lives to be reminded of her future in a couple of years.
My little brother has Familial Adenomatous Polyposis. He has no large intestines and only part of his small.
Yet we don’t talk about it or the Crohns.
It’s a guy thing.
I think that’s why women are smarter and live linger than men.
You know how to express your feelings and you know that’s it’s important to do so.
For some reason, guys feel that it makes them “less” of a man.
- DO you have a “pain management routine”? like do you have a system of things you do to deal with pain?
Crohns has brought with it Ankylosing Spondylitis, Compartment Syndrome (with surgeries), Iritis and skin outbreaks and lesions.
I hate anything that alters my reality. I try everything I can think of before I succumb to a pain pill.
I do hot epsom salts baths.
Lavender boiled and then put on low in a pot on the stove. It’s great calming aroma therapy.
Heating pads too.
- Are your friends/family understanding of you IBD? how do you feel when they are not understanding ?
I am very very close with my friends. They include everyone from Law Enforcement all the way to Hells Angels.
They are very protective of me and very understanding.
We don’t talk about it.
But if all of a sudden I say “Uh-Oh”, it’s almost like a Keystone Cop episode. Man, they scramble and find me a bathroom right THEN!
- Do you feel as if IBD prevents you from living a full life? , in the sense of not being able to “go out”, have relationships, have the job you want, be as active as you word like …etc?
Before Crohns, I was a type “A” personality. Great job, did anything and everything there was to do. Was in unreal physical shape and 165 pounds of solid muscle , spring steel, and rawhide.
One year after Crohns I was 97 pounds and almost living in a hospital.
I’m “up” to 120 pounds of nothing but bone. I look like something out of a concentration camp. It’s hard to walk. Hard to breathe.
I get out of my house about once a month or every two months. Sleeping is the only thing I seem to do well.
I went from $160,000 a year in a job I adored, to disability of $900 a month.
- What is the biggest thing that IBD has held you back from doing, is there a specific event that stands out?
Not Being able to do things with my wife. We do nothing now and have been that way for years.
- Do you feel guilty when you can not attend events due to your illness?
- How do you deal with the ignorance that surrounds IBD?
Did you read the post that got me kicked off? LOL !!!!!!!
kiefer deals with ignorance by telling it how it is , being straight forward and not caring what others may think of him or his opinions
- Having you ever felt like giving up? how do you pull your self out of those feelings?
Have I ever felt like giving up?
Only when my son died. That was before Crohns. And that was the grief that kicked in.
I couldn’t do that to my wife. She’s an angel to me.
- In three words, try to describe your IBD?
3 words? Man you’re strict !
- Last question. you met a new person, they have never heard of IBD before, How would you describe it to them ?
I always say “it’s an autoimmune disease, but it’s not contagious” and then I pat them on the shoulder.
Now three tip’s you would give to a newly diagnosed person:
- DIET !
Be very very careful and don’t take your guts for granted. Your diet can actually kill you. Your next trip to surgery because you ate a bag of nuts AGAIN … might be the one you don’t wake up from.
- NO DENIAL!
Stay off the internet trying to find answers that are different than what your doctor(s) have told you. Stay with your medical team and follow instructions. Their job is to keep you alive. If that means you have to quit smoking and drinking and doing drugs … then make a choice as to which life you want to have and don’t gripe about the one you pick.
- SUPPORT !
Whether it’s people, animals, funny movies, church, the internet (for fun)… find something or someone which makes you feel GOOD. Something or someone which makes you SMILE. Something or someone which makes you feel WARM.
Kiefer’s final statement:
Was one of the rare folks that got it later in life.
I can send you a picture from a far that was taken a long time ago. I am too humiliated to have my picture taken because of the way I look.
True story: I was at the doctors office about 6 months ago and was going through skin and eye outbreak. When they called my name there was a couple coming out and looked at me as we passed each other. Once they were behind me just a foot or so he said to her “Meth Head”.
Here is the Video Kiefer made:
As You can see, Kiefer is a strong Man, a fighter ,a very articulate humbling man. He is not only strong for himself he is strong for everyone close to him. Through all the heartache and pain he has gone through Kiefer finds away to stay positive. We commend you Kiefer for sharing your IBD Life with us.
We wish you all the well wishes in the world , keep fighting we need more people like you in the world.
For an update on the awareness video ” WE Have IBD” please Click here
Contact/follow me at:
Google plus: +MerandaRoben