My story

My name is Cody. I'm 29 years old, live in Texas and tomorrow I start perhaps the risky thing I've ever tried. I was diagnosed with Crohn's at 14 so I have a long history with the illness. Only one drug has ever gotten me into remission and that's Remicade. It put me in remission for 7 years and allowed me to get through high school and a few years afterwards. But, once it came back, it never left. I have been in a non-stop flare up for close to 9 years now. When I went back on Remicade after being off of it for years I began to notice that evening my joints starting to hurt. By the morning it had moved into every joint of my body. It was the most excruciating pain I've ever felt. Turns out my Doc said I have developed antibodies against the drug which left me with severe arthritis all over my body and I could never take it again. Since then I've been on more steroids than I can count in fact my Doc says I've become "steroid dependent."

Then came the biologic drugs. After Remicade I was put on Humira for three years and nothing. Cimza was another option, but my doctor said if I wasn't responding to other drugs it would most likely not work. I won't even list all the pills I've been on because they're too many to remember.

Tonight I write this because honestly I'm a little scared. My doctor has said I have two options to deal with my moderate to severe Crohns disease, either surgery which would remove all of my anus, rectum, and colon and leave me with a permanent bag or gamble on Tysabri, a drug used primarily for MS patients.

Tysabri would seem the easy choice except the risk, albeit small, of developing PML which can leave a person to slowly die from going brain dead. My doctor checked me to see if I was a carrier of the "JC Virus" which increases your risk developing PML. Turns out I do, but he believes if I take it every 8 weeks instead of every 4 it decreases my risk of developing PML.

On top of all this my newborn son turns 1 month old tomorrow. I stand to lose more than ever now and the thought of not being their to see him grow up or grow old with my wife stirs a lot of emotion as you might guess. I've sought out as much wisdom as I can from doctors, family, and church friends and I believe that this is a gate that I'm going to have to walk through in faith. I suppose only time will tell if I've made the right decision. I've read a lot forum post and to be honest it's so sad to see how people, including myself, have to live. Like everyone all I ever wanted to do was to raise my son, love my wife and be able to enjoy what life had in store for us. Now it seems that may be in jeopardy. In the end all I can do is try to educate myself and have faith that I'll make it. I am grateful for new drugs but with Tysabri I am literally risking it all, but after discussing it with many, many people including my wife and parents everyone believes despite the risk Tysabri would be the way to go. I guess it all starts tomorrow when I receive my first infusion. God give me the faith and strength to go through this.

Hi NEIGHBOR! Welcome to the forum, I am sorry you are having such a hard time. I don't' know what I would do in your situation in all honesty.
I am assuming with the high risk of side effects that you are going to be monitored very closely? If those side effects are caught early on can they be reversed?
I am sorry that you have reached a last resort decision such as this, I truly am.
I am trying to start a N. Texas support group, there isn't really much here for Crohn's sufferers. No pressure what so ever I just wanted to give you the option for more support :ghug:

afidz,

Thanks for reply. As of now the plan is to monitor me closely. My doctor says I need a colonoscopy every two years to make sure I do not develop colon cancer. The side effects of Tysabri, namely PML, can be treated from what I've read, but there is no cure. Obliviously the biggest concern is death as mentioned in my previous post. If I do develop PML and do not die from it, which some don't, there are other side effects the biggest I've seen is blindness. Thank you for sympathy but when I look on here at others stories I see many are in a similar situation and going through the same thing. I suppose there is no right answers here.

In regards to the support group. I've never actually been involved in one although I've heard about things like that for years. If you are able to get a group going I might be willing to give it look. I'm in Rowlett, just east of Dallas so I'm not sure where you might want to eventually do this but I would be open to the idea.

What does PML stand for?
Can i ask who your doctor is or what hospital you go to? If you are not comfortable with sharing that I understand, I am just curious.
I am not sure where I would hold a support group once I started to people, I think I would leave it open for discussion.
My Boyfriend owns a pizzeria in Garland so I am on your side of town(ish) all the time although I have never been to Rowlette. I have only lived in Texas for 3 years so I am still very geographically confused :rof:

The link you posted on PML is correct. It's just a shorter name for Progressive Multifocal Leukoencephalopathy. My doc came highly recommended at UT Health Southwestern. He was several partners in his office but his name is Dr. Swaroop. He's been great and far more knowledgeable than other doctors I've had.

Garland is right up the street relatively so distance wouldn't be an issue. Just let me know if/when you're planning on a group. I'm honestly not great at checking/updating forums which is why I'm not on many, but I will try to check this as frequently as I can.

I met someone recently that also goes to him I believe, they said pretty much the same thing as you. If you have the time, go to the doctor review section and tell everyone what you think.

The choices you have are at best, difficult. Especially with a little one. Only you can make the decision though I would love to have the magic answer for you. I can do little but offer you my prayers and my support no matter which path you take. I am on Humira for moderate/severe Crohn's. I know the risks, I don't like them, but like you, I face the loss of my colon when the Humira stops working.

If this second phase trial proves positive, this is what I will do: http://www.seattlecca.org/clinical-trials/transplant-NCT01570348.cfm

This is a new trial using bone marrow transplant to cure Crohn's disease. It isn't easy, but if you qualify, you can get in. They are taking applications now.

I don't qualify. At least not yet. Not knowing your condition, you may. It's a shot but maybe a better one for a cure.

UPDATE: It has now been 7 months since I began Tysabri. I had luck for 5 months when I began the old familiar symptoms again. First, I had ulcers on my tongue. They burned with anything I ate or drank. Doc put me on on oral steroid which then broke my mouth out in some rash which went away after I stopped taking it. Then the joints began hurting. I thought they'd go away after a few days, maybe I'd slept weird. Turns out I was wrong. Now using the bathroom makes me so ill I almost vomit. I've been able to stop it but going through that multiple times a day is very draining, especially when you're at work. The steroids worked for about 4 days. Once I moved from 5 down to four the sickness is returning. I know have a 7 month old and to be honest it is difficult to consider him grow up seeing me in this condition. I know many of you come from a variety of backgrounds, but I have to say Jesus is working on me. No I may not, or never be, healed or cured from this disease. But I do believe, I have to believe, there is some purpose in this. The future never really looks so bright when you feel like your inches from death, but I know this will not last forever. There will be time when this will pass, either in this life or the next. My main issue I'm trying to focus on is how I can serve my wife and son while carrying this pain. I am so lucky to have the spouse that I do. She carries more than she ever should, guess she was serious about those wedding vows

But sadly I wish I could post that I'm 100% better, enjoying life with my wife and son, but that's just not the case. But I'm still here, still got to kiss my wife today, and hold my son in my arms, and that's more than I could ever ask for.