Sarah's Crohn's Blog - Getting Back to "Normal" Life
Sarah’s Crohn’s Blog is a series of journal entries related to Sarah’s battle with Crohn’s Disease. She was initially diagnosed with ulcerative colitis in 2010, but since then the diagnosis has changed to Crohn’s Disease. Anything referring to ulcerative colitis in these blogs was simply written before the diagnosis changed.
February 7, 2020
I'm already 5 weeks out from surgery, and things are going great! My life with an ileostomy and poop bag has been way easier than I expected, and it truly does not cause me any distress. Aside from having to adjust my wardrobe a little bit and getting up several times a night to empty my bag, I barely even notice it is there. Any issues I have are very minor and nothing compared to what I have already been through. I still have not had a single cramp since my surgery, and my appetite is great. I am gaining weight and muscle, and I am up to 106 pounds (at my lowest I was 86 pounds, and my goal is 120 pounds of healthy muscle and no prednisone fat). I am shocked at how long it is taking me to regain my strength since I'm so young and typically have quicker results from working out. I still can't walk up a flight of stairs without using my hands for assistance, but I am getting close! I'm doing physical therapy exercises nearly every day and drinking lots of protein shakes, and you can see in the photo below that my chicken legs are slightly thicker than when I was in the hospital.
To be honest, if you had asked me a few months ago, I would have told you I would be cross-country skiing and climbing up ropes by now, but I have finally accepted that this is going to be a slow journey, and I will adjust my fitness goals accordingly. Aside from the slow progress from a fitness standpoint, my only other struggle right now continues to be weaning off the prednisone. My headaches, night sweats, and body aches are getting better, but I continue to be extremely fatigued which I think is a combination of deconditioning and my adrenal system being all messed up. I'm down to 20mg of prednisone which means I have four more weeks before I am off it (I go down by 5mg a week).
In other news, I recently got the pathology back from my colon, and based on the characteristics of the tissue, the doctor thinks I have Crohn's disease instead of ulcerative colitis. These two diseases are very similar in that your body views its GI tract as a foreign invader and attacks itself. The difference between them is that Crohn's can affect anywhere from the mouth to the anus, and ulcerative colitis just affects your colon (therefore, ulcerative colitis can be "cured" by removing your colon and rectum). In my case, I have only had involvement of my colon, but that can happen sometimes with Crohn's disease.
Unfortunately, because Crohn's has the potential to affect the small intestine or other areas of my GI tract in the future, I will have to be on medication for the rest of my life to prevent it from flaring in these areas. The good news is that it also will affect my surgery plan in that I will be able to keep my rectum. In ulcerative colitis, they would remove this because it would be considered a cure, but without rectal tissue, you lose the storage space for your stool. For people with ulcerative colitis, the surgeon would make a new rectum out of small intestine (called a J pouch), but this reservoir is not as effective as rectal tissue would be, and it also has the potential to get infected. Also, your rectum contains important nerves that are important for the functioning of your urinary and reproductive systems, so I'm happy I get to keep those as well! I meet with my surgeon and gastroenterologist again at the end of April, and from there we will decide on a date for my next surgery where we will reconnect my small intestine to my rectum, and I get to poop out of my butt again. I'm sure time will fly, and I'll be back in surgery in no time!
One last thing I wanted to mention is that prednisone has taken a huge toll on my body. Of all the things I should be negative about, the only thing that really seems to bother me now is having to look at myself in a mirror. Prednisone has given me the classic chunky "moon face", and I have been purposely posting photos that hide it. The other thing that makes me sad is my hair loss. It is sooooo thin now, and I just can't stand to look at it. Dale gets upset when I complain about my face and hair (first world problems!), and he made a good point that at least my hair will grow back! I posted a before and after photo of my hair so you could get a better idea of how significant of a change this has been. Even though I'm not losing much hair any more, it will still take a year for it to grow back, so it will be a constant reminder of where I came from. It really exemplifies the severity of what my poor body went through, and it's a reminder that life could certainly be a lot worse than it is now! I am so grateful to finally be feeling better, and I will continue to enjoy life's simple pleasures while I continue to get stronger.