It’s Crohn’s and colitis awareness week!! I’ve been trying to figure out what to write about for awareness week and I guess what’s gonna happen is I’m going to write about a little bit of everything!!
First off, I’d like to thank ALL of my supporters for reading and following my blog. I know I haven’t been very active lately, and I apologize for that, life has just been a bit crazy.
Many of you who follow and read this blog know me personally, but for those who don’t, I’ll give a quick rundown for the sake of awareness week. I was diagnosed originally with ulcerative colitis in 2008. Colon removed with ileostomy placed in 2011. Re-diagnosed with Crohn’s somewhere around 2013. Reversal surgery (ileo-rectal anastomosis) in 2015. perforated September 2017, emergency surgery with ileostomy placed again . Incision revision/debridement surgery December 2017. And second reversal surgery may 2018. Add in 2 more non-Crohn’s related surgeries and you get a total of 8 surgeries!
Fast forward to today and I’m still struggling a bit from Crohn’s and all my surgeries. My biggest struggle these days is gaining weight. I have had an extremely hard time gaining weight since my reversal surgery!! A few months ago I actually lost weight, down to 100lbs. I gained just 2 lbs and was holding there for at least 2 months. I broke down and decided it was time again to buy some boost nutritional drinks to help me gain some weight. In the last month or so, with the help of multiple boost drinks a day, I have been able to gain 5 lbs!! this seems like nothing, but for me I am super proud that I was able to gain any weight at all!! I am currently 107 lbs.
The other big thing I have dealt with since my perforation surgery is nausea and lack of appetite. And thankfully I seem to have turned a corner in the last couple weeks. Like seriously turned a corner, Cody, and even one of my friends have commented about how surprised they were about how much I ate in one sitting! This is such an accomplishment for me and its nice to really be getting back to normal!!
In other news, I had to switch insurance…again, because my company is no longer serving this area…which I was actually OK with me because my previous insurance was terrible. Unfortunately, changing insurance had its own complications. My stelara is no longer covered on my pharmacy benefits which is a huge pain in the ass!! But that is working itself out…hopefully.. And my new doctor that I saw, COMPLETELY blew off every issue I brought up to her. She refused to prescribe me any of the medication that I have been on for years, including sleep aid, and decided all of my symptoms were “in my head” and prescribed me Zoloft. Now I don’t disagree that I could benefit from a medicine like this, especially because I have been struggling hard with anxiety lately, but this wasn’t a fix all to what I have been experiencing. The Zoloft turned out to be horrible for me, in more than one way so I stopped taking it. I have a second appointment with e DIFFERENT doctor on the 12th to discuss basically all the same stuff I tried to discuss with the first doctor.
Just yesterday I saw a GYN doc to get my IUD replaced (which was awful!! but totally worth the 7 years of reliable birth control) and before she started the procedure, she asked me if I had any other medical concerns and now was my chance to air them. I took that opportunity to tell her about my experience with the other doc and a couple of the issues I’ve been dealing with mainly pertaining to sleep. And this doctor actually LISTENED to what I said!! She explained that she also normally doesn’t prescribe ambien for sleep but after listening to what I said, she believes that I am smart and know my body well and I can actually benefit from using ambien when I need it to sleep. You guys! I almost cried! She actually listened!! And she gave me the prescription. It was so refreshing to have someone actually listen to me!! unfortunately, she cant be my GP, but at least I can have a little relief when I need it.
Cody and I just recently joined a gym again. I have really been in a slump about working out ever since my last surgery. It seems so weird to me because while I was working out before reversal surgery, I LOVED it and felt amazing! But for some reason I cant get off my butt to start working out again. So, like last time, we have joined a gym, and have gotten a personal trainer to help start me off again and once I’m in the groove again I’m sure it will be easy to do.
Above all else I am grateful to still be alive, and to be relatively healthy. My battle is not over, and it never will be, until we find a cure, but I will continue to fight everyday to have a quality of live and be the best me I can be!! I love you all!!