The Pros and Cons of My Chronic (Crohns-ic?) Life

I did not plan to write this post, in fact I really hoped it could be avoided. But alas, it is the time so here goes.

I was diagnosed with Crohn's disease when I was 15. I was terribly ill then and then got better quickly and enjoyed 7 years of remission mediated by some relatively benign medications (minus prednisone, I hated that and would not wish it on my worst enemy..I don't look forward to having to prescribe it for others). Then, after college I had problems again and the old medications no longer worked. This was followed by several very difficult months of trying a new treatment, feeling better, developing hepatitis from this treatment , going back to square one and trying something new, feeling slowly better and finding a way to maintain that. It was a brutal time but I have been very happy and healthy on Humira for the past year. But my new miracle med is also a pretty terrifying drug with some less than desirable potential side effects and it leaves me immune suppressed, so what may be no big deal to someone else can become a crisis for me.

Which brings me to today...

Crohn's Con:
I had been feeling a bit under the weather this week. It started when I woke up with a red eye on Monday and that improved with antibiotic eye drops over the next 3 days. Later this week I felt a bit tired and had a fever and headache one night. My other housemates have been sick with various things since coming to Africa so I didn't think much of anything. But this morning I woke up and my right cheek was swollen above my sinus. I have said this before, Kisoro is a beautiful place for healthy people. It is freaking terrifying if you are sick. So I texted my dad (it was a reasonable hour at home) and asked if I should be on antibiotics. This led to a conversation about potential causes/complications and so I woke Sarah up and she calmly advised me to call international SOS. I chose to call the South African branch, they are close enough and their accents are so wonderful I figured it could only be a pleasant interaction. They shared my father's concerns, that if this were something like an abscess and with my immune system and geographic location, things could become very bad very quickly. They wanted me to get to somewhere to be seen and get a CT scan and would prefer if that location had a major airport. SO my friends were kind enough to cancel their hike and they let me borrow our guide, Emma and Andrea joined me for the trip. We packed our things quickly and headed off for the 3 hour drive to Kigali (negotiated down from the 10 hour drive that international SOS wanted me to take to Kampala...no way jose). Once at Kigali, Andrea was very helpful at explaining the situation and what I needed. The Doctor I met with was an overworked resident who just wanted me to take an antihistamine and some blood tests. But we prevailed and I got a CT with and without contrast and we even lucked out and there was a radiologist there to read it. No abscess, no fluids, nothing that looked concerning. I just need a course of antibiotics.


Crohn's Pro: So for anyone else this ordeal would have been overkill. But for me and my immunosuppressed self it is considered necessary medical protocol. In fact, when it looked like a radiologist may not be available, International SOS was ready to fly Andrea and me to South Africa to be seen by a doctor there. We reached a compromise. I wanted to just go back to Kisoro after we realized it was not a concerning finding. They wanted me in South Africa. We settled on me staying in Kigali for the night, seeing how I feel tonight, marking my swelling and seeing how things go and deciding in the morning. What this then meant was that International SOS had to provide housing for Emma, Andrea and me. I asked for the name of the hotel and couldn't understand the woman on the phone so I asked her to spell it...hotel d e s m i l l. Emma stopped me as I was repeating the letters "Hotel des Mille Collines?!" Me: Uh yeah that seems to be where she is going with this. Andrea: that is the hotel Rwanda hotel! SO without my asking, this insurance company has put us up in the fanciest hotel in Kigali. There is a pool. And free brunch. And a great shower and clean linens and oh man it is amazing.

So sometimes having a chronic illness can be a big pain in the butt. I have had more colonoscopies than most 60 year olds. But some days, like today, there can be some pretty wonderful silver (or five star) linings. So Thank you international SOS for providing me and my family with peace of mind in a pretty difficult situation and thank you for the wonderful accommodations :)

Xoxo,
A recovering Hope who is a happy camper in her white bathrobe

(Photo taken Sunday morning, clearly looking less puffy/red and much happier)