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Decisions, decisions


I want to cry, scream and pretend like nothing happened all at once. More despair as yet another treatment option fails me. Another disappointment. Another set back. 


Unfortunately it's not just about my ulcerative colitis and trying to get myself healthy, it's also about how my UC has gotten in the way of my hopes of eventually having a family of my own. 


At least when there were more treatment options I could be hopeful of maybe one day feeling better and being able to start a family. But now I'm woefully aware of my limited options and the realization that I likely might not ever really get to be normal again. That maybe no medication I try will help. That maybe the one thing I have left is the utterly life changing surgery to have my colon removed. 

Willful hope, denial, stubbornness...I'm not sure what to call it, but I had always believed deep down inside that somehow I would find something that would work, something that would get me back to my normal. And now I don't know what to believe and have to face the reality of my limited options and what they mean for my future. 

There is a FDA medication trial that I might qualify for. While the idea of a new treatment is exciting the idea of potentially being on placebo, and the unknown short and long term side effects of a new untested medication is scary. 

I could always go back on Remicade and methotrexate -- the one medication that did put me into sustained remission. But I would have to accept that I wouldn't be able to get pregnant while on methotrexate, meaning our main chance at having a family is gestational surrogacy or adoption. Plus I would go back to having 3 hour long infusions every month and the side effects from the meds. AND who knows if it would work this time around? 

Then of course there is always surgery. The option that many gatros would consider "curative" -- if you remove the entire colon then there's no where for the UC to go. But surgery isn't that simple. It's actually multiple surgeries. It's living with a stoma for some period, where your small intestine is pulled through your abdomen wall and you "poop" into a bag attached to your skin. It's going back to have a separate surgery (or two) to turn your small intestine into a makeshift colon. It's realizing the permanence of a "new normal" with higher than normal bowl movements, the possibility of fecal incontinence, and of course pouchitis and other infections. 

I know about living a new normal. My new normal is shitty, reaally shitty, but I know how to manage it. I've dealt with it over the past 5 years, and have seen the worst of it these past 6 months.

My new normal is: 
  • Going to the bathroom 15-20 times a day and of those needing to wake up 4-6 times at night
  • Not having normal poops and mostly seeing blood and colon lining
  • Dealing with cramps, nausea, vomiting and a lack of appetite 
  • Losing 18 pounds in a matter of weeks and struggling to put weight on
  • Having hemorrhoids that are painful and make everything worse
  • Never being able to fart because you never know what might actually come out
  • Having the occasional accident -- yes totally shitting myself because I had the sudden urge to go and just couldn't get to a bathroom on time. I've had to throw away my shit filled underwear at a restaurant. I've sat in my own shit in the car driving home for 30 minutes. We're not talking about some skid marked underwear... 
  • Always carrying around an extra set of pants, underwear, wipes, toilet paper, trash bags in case that accident does occur.
  • Constantly having to be aware of where the bathroom is, and how quickly I can access it if I need to. 
  • Being anxious anytime I leave home.
  • Feeling exhausted ALL THE TIME. 
It's not easy, but I've still been able to lead as "normal" as a life as I can. I still spend time with friends and family. I go to yoga 5 times a week. I do all the things a normal person needs to do -- have a job, pay the bills, take care of myself, my home and my family. Most people probably look at me and have no idea anything is wrong with me.

Part of what has kept me going and persevering through my current new normal is the hope that this new medication would work. I guess at least there is a silver living that maybe this past 8 weeks is the worst it can be -- full flare uncontrolled by medication. It's definitely not been easy, but I'm still here. 

The "new normal" of surgery is scary and unknown. But I need to start accepting that my last worst case scenario may need to play out a lot sooner than I ever expected. 

All I want to is to be ok, is that so much to ask? 
I've been flaring since May 2016, with only a brief  short lived "remission" this past summer. Each flare since my diagnosis in 2012 has been progressively worse. How much more can I put myself through? I'm strong but at some point, won't I break eventually? 

So here I am trying to muster up the courage to regain some hope that maybe this FDA trail medication will work. And if not I can always go back on the Remicade + methotrexate. And then worst case, there's surgery. 

That's all I can do. Try whatever is out there until there's nothing left but surgery. Knowing all the while that all treatments except for surgery will mean not being able to get pregnant. And that I would have to stay on those medications for the rest of my life. 

But at the same time I think to myself -- is keeping my colon worth delaying having a family, or having to pay a lot of money to have the chance to have a family. Is it worth going through the disappointment of another failed medication? Is it worth the pain and discomfort I go through daily? Is it worth having to take medications forever? If I end up a year from now needing surgery, will I have wished that I had just done it sooner? 

I just want to believe a medication will work, something to get me to really get back to my normal. I'm not ready to settle for a post surgery "new normal". I guess I still have hope, or am blindly stubborn. 

I can't help but wonder what is the right thing to do here? At what cost does feeling well and getting to start a family come at? 

I guess only time will tell. 

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