What's the difference?

I have had several people talk to me about my health lately and have said "I can't believe Crohn's gave you aHUS"....or "I can't believe you had to get your thyroid removed due to aHUS." 

The above are not the case AT ALL. So I wanted to take a few minutes to tell you the differences in these and my health history with the 3 of them. 

Let me first start this by saying, ALL THREE DISEASES ARE DIFFERENT!

Crohn's Disease - diagnosed 2012. 

https://www.nlm.nih.gov/medlineplus/crohnsdisease.html

Crohn's disease causes inflammation of the digestive system. It is one of a group of diseases called inflammatory bowel disease. Crohn's can affect any area from the mouth to the anus. It often affects the lower part of the small intestine called the ileum.

When I was diagnosed with Crohn's Disease, I had been ignoring it for a very long time. It wasn't until I had bleeding for more than a week before I contacted a GI and ended up at the ER. 

Because of this, I had a lot of scar tissue in the small intestine, which caused narrowing in the intestine. I got MANY obstructions.

In 2013, I underwent a lower right colectomy. This basically means they removed about 18 inches of my small intestine, my ileocecal valve, my appendix, and a few inches of my large intestine. 

I do still have some issues with my Crohn's, but for the most part....I follow the diet I know works for me and I keep up with my symptoms and see my GI regularly.

This is something that has no cure. 

Grave's Disease (autoimmune hyper thyroidism) - diagnosed 2013.

https://www.nlm.nih.gov/medlineplus/ency/article/000358.htm

Graves disease is the most common cause of hyperthyroidism. It is due to an abnormal immune system response that causes the thyroid gland to produce too much thyroid hormone. Graves disease is most common in women over age 20. But the disorder can occur at any age and can affect men as well.

After having crazy moments (literally), high heart rates, hot flashes, hair loss, drastic weight loss, major swelling on my neck; I went and got checked out. After multiple blood tests, it was confirmed that I had Grave's Disease. 

For 2 years, I tried the medications. I failed the medications. My Grave's was not treatable with medication. So June 2015, I had a total thyroidectomy. Since, I am on medication because I now have no thyroid to produce the hormones needed.

atypical Hemolytic Uremic Syndrome (aHUS) - diagnosed October 2014.

http://www.ncbi.nlm.nih.gov/books/NBK1367/

Atypical hemolytic uremic syndrome (aHUS) is a rare syndrome of hemolysis, thrombocytopenia, and renal insufficiency. Genetic mutations in the alternate pathway of complement are well recognized as the cause in more than 60% of patients affected by this thrombotic microangiopathy.

September 2014, I was on a medication for Crohn's (a low dose chemo drug) and had liver failure from it. Because of this, it triggered the genetic mutation I didn't know I had, called aHUS. This put me in kidney failure. Caused my platelets to crash. Blood counts dropped, etc. 

I currently get treatment for aHUS every 10 days via IV. This is something that has no cure. 


So, please take note that while there are some similarities in my diseases, they are not causing each other. They are all very different and are treated very differently. 

And just like that……a decision is made.

After lots of thoughts, research, prayers, asking other’s opinions, etc…..I have decided to add the 6-MP (talked about in my previous post) to my list of drugs.

After talking with the GI’s office some more, I feel like I can add this in and give it a try. (anything to avoid surgery at this point).

If I don’t like it, or I feel it isn’t working, or my blood/lab work gets crazy…..I will discontinue it.

So please keep me/us in your prayers.

Crohn's/Health Update

I feel like all I post on this blog now is about my health, and to be honest, that is what my life revolves around right now. It’s fun times for sure (insert sarcasm here).

I have had a few setbacks lately.

I am awaiting appointments from a few GI doctors for a 2nd opinion on my condition as my current GI has requested this. Hopefully those will come soon.

On Friday, Feb 22, I started experiencing some extreme pain and ended up with vomiting and a fever.

I had an appointment with my current GI doctor yesterday, March 4th.

I am still have a lot of lower right abdominal pain (which is mainly where my Crohn’s is and where my stricture (narrowing) is located). I am on 2 different types of steroids (currently 15mg of Prednisone and 9mg of Entocort), 8 anti inflammatory pills (Pentasa, each pill is 500mg), potassium (20mEq), and multiple supplements (6 multi-vitamins, 4 GI vitamins) a day, plus my Humira injections every 2 weeks. This is not helping the pain.

My current GI believes that my stricture (narrowing) is getting smaller, which makes it difficult for anything to pass through, thus a blockage in my small intestine could occur at any time. If this were to happen, it would result in emergency surgery to remove the narrowed part of my small intestine. This is something we obviously would like to prevent for as long as possible. When a surgery takes place like this with Crohn’s…..normally the Crohn’s just comes back in a different place, thus requiring multiple surgeries.

My current GI also believes that although the Humira worked almost immediately the first time I took it; it is not working as well this time around. He asked me to research and think about and pray about adding another immuno suppressant to the Humira. This one is known as 6-MP or Mercaptopurine. (you can read more about it here: http://www.gihealth.com/html/education/drugs/purinethol.html )

While Humira already has black box warnings from the FDA on the side effects, 6-MP would increase my risk of getting lymphoma. I have accepted the risks with Humira and know that the benefits for now, outweigh the side effects or potential risks. Adding another immuno suppressant to this makes me more nervous.

So I need advice, prayers, thoughts.

Do you take 6-MP? Have you ever taken it with Humira? What side effects have you had? What are your thoughts on it?

Please, please keep myself and Ben in your prayers as we pray, research, and think about this next step.