Sunday, February 22, 2015

Tough Decisions

So on the tail end of good news in the diagnosis and finally having a plan, unfortunately, this post is not as positive...at least it seems that way at first glance. But if you read all the way through, hopefully you'll catch a glimpse of why this is still a step in the right direction even if it feels like we are taking two steps back.

So I know I've mentioned that I'm still having a lot of symptoms and likely will until we figure out what treatment is going to be best for me. Right now, the most troublesome issues are GI related. I've been dealing with a lot of stomach pain, nausea, vomiting, etc. for months now. Right about the same time as our wedding in September, I was starting on a mostly liquid diet due to severe problems tolerating solid food. Over the past few months, things have continued to progress and the past few weeks I've been unable to tolerate anything beyond clear liquids and popsicles. Just in the 4 months we have been married, Nick and I have made 7 ER trips and had a 4 day hospital stay due to my GI issues...3 of those have been in 2015 and we're barely six weeks into the year...and that doesn't include the many nights spent in serious pain but not wanting to make another trip to the hospital...

We are hopeful that with the new diagnosis, once we find the medication combination that works best for me, these issues will calm down and become much less troublesome. My doctor in MN who diagnosed me is also confident that as we find my treatment for MCAS, I will see considerable improvement in my symptoms. HOWEVER, in the mean time, I still need some relief...

All this has led up to the tough decision that we have made for me to get a temporary feeding tube. I will have an nasojejunal tube (NJ tube) which bypasses the stomach and extends into my small intestine. It will allow my stomach and top portion of my intestine which are the most effected by the gastroparesis to rest, but will still provide a way for me to get the nutrition that I need. It does not require surgery since it will only be temporary and is placed during an endoscopy by my GI doctor.

So the downfalls...for me the big one is...the N part of NJ tube. For those of you up to date on your medical terminology, yes it is referring to the nose (naso). That means the tube will go through my nose and follow the normal food pathway, down the esophagus, through the stomach, into the small intestine. To answer the obvious question, yes, I will have a tube coming out of my nose...

Not exactly what I had hoped for to start off 2015...BUT, we are still hopeful =) We are choosing to go this route because we (my family and doctors) believe this is the best treatment option for me right now. It does feel like two steps back...we FINALLY got the diagnosis and instead of feeling and looking better, I need a feeding tube...in some ways it could be discouraging, but we are focusing on the positives, seriously, I mean that =P

It's positive because it will allow my GI tract to rest while I can still receive the nutrition that I need. As we work toward finding an MCAS treatment that is effective, I can avoid the stress related to having to eat and knowing it will cause severe pain and nausea. Ideally, once we do find the most effective treatment for me and get my mast cells calmed down, I will be able to transition back to a normal diet and not have my body rebel as we will have addressed the cause of my issues. In addition, hopefully this will keep us out of the ER for a while! In case you hadn't noticed after reading some of my blog posts, the ER is definitely NOT one of my favorite places...despite how frequently I seem to end up there...haha =)

And on that note, I'm going to end with some humor (at least I think it's funny =P). When I was in college and some of my symptoms started becoming worse, one of my good friends was convinced I had picked up some sort of parasite or worm when I had gone on a mission trip to Brazil. She was so convinced she even decided to name it Herman. As Nick and I have been preparing for me needing a feeding tube, Nick has been helping me come up with ways to make it less awkward for people to see me with a tube coming out of my nose. One of his ideas (specifically for the kids at church, although I suppose it could work for anyone) was to tell the kids I had a pet worm that I kept in my nose and was now letting it out. Yeah, I know, a bit gross, but at least it takes the focus off the feeding tube, right?? Not sure I want people thinking I have a worm in my nose though...

Anyway, in honor of Liz and to fuel Nick's enjoyment, I will be naming my tube Herman. So the next time you see me, don't forget to say hi to Herman, too. =P

So that's the latest update.

Please pray for quick healing from the procedure that was on Thursday. I am really struggling to recover and very uncomfortable.

Please pray for this to be effective and that I will benefit from this with no negative side effects or reactions. Right now I am struggling to tolerate the feeds in the tube.

Pray for me and Nick as we continue walking down this tough road, and that during the time I have the NJ tube, we will find an effective MCAS treatment.

PRAISE for doctors we feel we can trust and truly care about helping me. This was more than I could have hoped for, and we are so grateful.

PRAISE for all of your walking this road with us and lifting us up in prayer. We are so thankful!

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