Medical Conclusions

This happened a little while ago, but I am a little bit behind on writing meaningful things on my blog. We will even see if I am truly in the mood to do this one justice.

Jared has Ulcerative Colitis. There is really no secret about that. I guess the secret has been what kind of a long, long battle it has been.

There is a book written by Jourdan Reuben that is called "Patient Heal Thyself." The first chapter of the book documents his incredible struggle to stay alive in the midst of a serious case of Crohns' Disease. He talks about going to see doctors from all around the world. He tries every diet, every fad, everything. He is even told that he is one of the unlucky people on Earth that is affected by the satellites that circulate the earth.

I don't think it was until I read that book that I truly got the severity of what Jared was going through sometimes. Tough he doesn't have Crohn's disease, the effects of UC (ulcerative colitis) basically represent themselves in a very similar manner. One thing about the chapter I read in Reuben's book was that he always knew where the bathrooms were no matter where he went, he always knew where the bathrooms were. Jared told me that this was in fact the truth. I am always amazed when we are anywhere that he really does know where the bathrooms are. Besides the fact that it is annoying for him, it is kind of amazing for me, and dare I say handy?

To make a long story short, Jared has too tried a lot of things. There are a LOT of things people say that one with UC of Crohn's need to do to handle their disease and keep it completely under control. Some people say no grains with gluten (like in Celiac disease). Some people say no dairy. Some people say it is caused by parasites of this kind or another. Some people say it is hereditary and there is nothing you can do about it. Some say it is lack of smoking or exercising. Some people say it is caused by stress, etc., etc.

Everyone has their own solution to the situation. Their own thing that if you just do it will make it all better. They almost always have people that they know that have tried that method that are much better, and "see it worked for ___, why wouldn't it work for you."

These things are all wonderful. I am dead serious. There is nothing better than having hope that if you just stop eating eggs/wheat/ dairy/ sugar or start/exercising/getting vitamin infusions, etc. that everything will be better and you get to have your life back. I am speaking from co-firsthand experience. That is, I have seen Jared go through this whole thing, and I have helped him. I have worked with him to design special diets that try to fix one thing or another. The bottom line is that they just don't work, it just doesn't work.

In the past, I have been hammered by friends that had friends that had the disease. Their friend just did this and that was the solution. "You should do that with Jared, and that will fix all your problems." Though the advice has been given in the spirit of help and hope, it almost always comes back to the fact that it doesn't work AND you look like you just blatantly don't care because in the eyes of the friend that gave you the advice, it should have worked.

And it was disheartening every time something that was supposed to work didn't work, we were both left wondering what on EARTH was going on? Why doesn't anything we try work.

Eventually, this summer, Jared got so ill that we decided to switch doctors. We found a really wonderful Naturopath that did a really good job. She had an idea about all of the possible factors with the disease, and she had helped a lot of people that had it get better. Unfortunately, three months later, Jared was still not improving a whole lot, and we were again in a disheartened situation.

You see, I am the FIRST one to look to natural medicine to try to fix something. I have been to the doctor less than 5 times my entire life excluding my pregnancy and c-section, which was just a fluke. Jared was not interested in the medical route because the idea was that he needed to have his intestine removed 5-6 years ago. For someone that just turned 20, that sounds like an awful idea. This was why he turned to natural medicine, and I was certain that every time we worked with an MD that they just told us that he had tough luck that there was nothing that could be done for the disease but stay on Prednisone or have your guts cut out.

A miracle happened when our Naturopath realized that Jared needed to go to an MD. Not just any MD, she referred us to OHSU. We ended up getting an appointment with the head GI doc at OHSU to see if there was any other hope. This hit me out of nowhere, because it would be the last place I wanted to go, but we were surprised.

In the meeting with the new GI doc, I came to a revelation. She outlined that there is a scale of the disease. When symptoms come on, if someone gets onto one of the crazy diets or the low-level drugs, it can really turn around and not be a problem. Diet could be a factor. However, there are some cases that low level drugs or special diets don't work for. Those are the people that are in Jared's position. He is faced with an aggressive and SEVERE case of Ulcerative Colitis.

Somehow, the lack of hope of it all was surprising. I was actually happy. I realized that all our efforts weren't for naught. For a lot of people, the things that we tried and that were suggested to us may have worked. That is why there are a lot of people out there with testimonials that their diets/supplements, etc. worked because they did. The fact was that we are dealing with a severe case of the disease and there are other solutions. These other solutions had never been presented to us because we were dealing with low level solutions.

To make an even longer story short, there is a new drug out called Remacaide that is given via infusion every 2 months. It acts to help the body keep the inflammation down and keep it from chewing itself up during bad times. We decided to try it, and it's not as bad as it sounds. We haven't turned to the world of drugs with no solution, we have found what works.

I've come to realized that the most important thing is quality of life. We have been slowly marching up a ladder for so long trying everything we possibly could. The thing now is that we are working with something that works. Jared has gained 14 pounds back in the past 3 weeks, which is a miracle. He is looking better and feeling better, etc. Not that we are out of the woods, but we are working with a solution that could give him his life back, and I wish for nothing more.