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Hello all

*I was near the end of a 72 hr. no sleep athon thanks to prednisone when i wrote this. You know, the zombie like trance when you are awake but not awake..LOL I will add to my story here and there to give more info. so you will all know more about me, but hopefully maybe help some of you*

(Cliff Notes)
My name is Richard and I am 41 year old male from GA.

Was diagnosed in 1995 and had first surgery in 1996.

Have had two resecs. with the last one including an illeostomy and reversal a year later. and 4 minor surgeries for rectal fistulas.

The Story

I was working driving a milk truck in 1995 and started having bathroom problems and wasn't very hungry much. I went to doctors and had all kinds of tests ran for parasites and all number of things. Then the sharp excruciating pain started and after a hospitalization in December of 1995, A GI dr. diagnosed me with crohns. He immediately started me on prednisone and I believe Asacol and I improved just a little the next cpl. of months. About April of 1996 I started losing weight fast. I would never eat and what i did eat came right back up. I was missing a lot of work and was so aggravated that this couldn't be fixed. In December of 1996 my wife and brother had to pick me up off the floor and carry me to the car and took me to a urologist because i went to go pee but couldn't and it hurt so bad. They did a cathater and couldn't get a drop. They transported me to the hospital because the determined I was completely dehydrated. After a couple of days they did a colonoscopy and found a near total blockage at the terminal illeum. I had went from 200lbs. to 104lbs. I had to swallow a big tube so they could get out all the acid and stuff that was backing up into my body and they prepped me for surgery and removed about 5 inches of infected area.

Did I mention that while all this was going on that my wife and I were only a month away from the birth of our first child.. Yep, not only did I have to deal with this, but she was about to give birth and neither of us was able to work at the time..... I recovered in about 6 weeks and went back to light duty work and for the next several years I would do pretty good and just have a minor flare up that was fixed by a month or so of prednisone.

Then in 2007 I started to get a pain in my buttocks. I could feel a small lump and went to my GI and he sent me to a colo rectal surgeon. Sure enough, it was a fistula. He went in and cut it open and all and that was gone until I got another about 4 months later. I have had to wear maxi pads ever since all this started due to the fact that these are open wounds and will not heal as long as I have active crohns. I was also starting to have regular flare ups and missing a ton of work. A friend of mine was a disability lawyer and he told me that I needed to file for disability. It took a year and a half, but I won and have been disabled ever since. My health kept getting worse and in May of 2009 I had a colonoscopy and they said there was a lot of scar tissue and they needed to go in and remove it. They also talked me into getting a temporary illeostomy so that both ends could heal and it would mean less chance of scarring.

This was the worst thing that has happened to me so far. My body rejected the illeostomy from day one. My brain and my intestines were not working together and whatever I ate or drank went right into my bag. I mean I could literally drink a 20 oz. Gatorade and look down and watch the bag fill up within minutes. I was having to use high output bags and changing them 10 times or more a day. The adhesive and adhesive remover kept the area around the stoma raw and it was very painful. I spent a lot of time in the hospital and they decided that I needed home health care and the outfitted me with a central IV and PIC line for parental nutrition. For those that don't know, I had clear fluid IV but would also have a big bag that we added vitamins too and this was my food.

With my immune system being low, the PIC line kept getting infected and I would have to be admitted in the hospital for about a week and they would have to install a PIC line in the other arm. I had this done about 4 times. Finally in May of 2010 I was able to go in for my reversal and this was the happiest day of my life. I did o.k. after I recovered from that surgery until that winter and then I started having flare ups pretty frequently. This is about where I am today. I started having a bad flare up last week and am on 40 mg of Prednisone and doing o.k. except for the lovely side effects.

I am going to see one of my first GI dr's at the end of the month and hopefully he will try me on something new and i will be able to report good news here in a couple of months.....

If you have any questions then feel free to ask away.

Just been browsing the forum and posting when I have a question or something to add. Glad to be here and thanks for having me.
 
Last edited:

Angrybird

Moderator
Location
Hertfordshire
Hello Richard and welcome to the forum, am glad you have decided to join :)

How are you doing at the moment? Are you on any medications and if so which ones?

AB
xx
 

David

Co-Founder
Location
Naples, Florida
Hi Richard and welcome! It's great to have you here :)

With the two resections, did they remove part of your terminal ileum with either of them? If so, do you get your vitamin B12 levels tested since that's where it's absorbed?

Again, welcome! It's great to have you here :)
 
Hello Richard and welcome to the forum, am glad you have decided to join :)

How are you doing at the moment? Are you on any medications and if so which ones?

AB
xx
I recently had a flare up and am currently at 40mg of prednisone. Hoping to start tapering by 5mg. in the next week.

For my crohns I also am on Cimzia and have been for about 18 mos., but haven't had any great breakthroughs with it.

My other daily meds. include Nexium, Zoloft, Morphine Sulfate ER 100mg and Roxicodone 30 mg.

I have an appt. at the end of the month with the gastro I was originally with 17 years ago in hopes that he will want to try something new. I really like my current gastro, but he is just too quick to go to prednisone and also I know there are many meds. that I haven't tried yet that I would like to try and see if they work. The meds. I have tried so far with no luck are: Pentasa, Asacol, Entorcort, Remicade and Cimzia. I wanted to try Humaria, but my dr. says that if Remicade didn't work then neither would that. I have read online that there are some that tried Humaria after Remicade didn't work and it is doing fine.

So anyway, I guess I have become living a certain way over the years and just learned to deal with it. I always have d and no energy and have tried all kinds of supplements and I do give them a fair chance but i guess I just need to find something that really fits me.
 
Hi Richard and welcome! It's great to have you here :)

With the two resections, did they remove part of your terminal ileum with either of them? If so, do you get your vitamin B12 levels tested since that's where it's absorbed?

Again, welcome! It's great to have you here :)
Hi David. I asked my wife and we don't believe so. I had an A1C workup done not too long ago and B12 was within range. My testosterone stays low and I have to give myself injections, but that's about it.
 

Angrybird

Moderator
Location
Hertfordshire
Hiya, you can certainly try Humira even if the Remi failed, in some cases people will do better with this because it has human protein (Remi is made with mouse protein). I have been on Remi in the past and have been told Humira would be my next med if I falre again on my current regime.

With regards to the B12 do you have the actual level or did the doc just say in the normal range? One thing with this is the range is huge which means you can be on the low level of 'normal' and still really need a boost to avoid getting problems.

I hope the upcoming appt goes well and you can get on a treatment that is going to get the tum settled for you.

AB
xx
 
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