Saw my GI today and he very matter-of-factly said “Your colon is a mess. Either it heals or you’ll be having surgery soon”.
I actually looked and felt much better today than I did when I saw him a month ago–when he told me “Oh you don’t want surgery!”–so it felt ironic that he wanted to discuss it today, now that I’ve improved and it finally seems like I have a shot on hell at remission.
But yeah, I agree: either the colon gets it’s sh*t together (ha, see what I did there?!) or I’ll be scheduling a colectomy. When he said that I was struck with both fear and relief; fear of surgery, but relief that my GI fully understands what a burden my colon is and how devastating this flare has been. He based his opinion on my recent lab tests, which showed my inflammation is “off the charts”.
I’m definitely better now than I was when I dropped off those lab tests 2.5 weeks ago, so I feel hopeful that (with a new treatment plan) I can get and stay in remission.
Here is what we discussed regarding a new treatment plan:
- GI wants me off the Prednisone. I want off the Prednisone. I dropped from 40mg to 35mg three days ago without issue. I intend to continue to wean 5mg per week until I’m down to zero.
- Since the Humira is working, albeit slowly, he has consented to increase the frequency of my injections from bi-weekly to weekly, pending a blood test to measure serum levels to be sure that wouldn’t be overdosing. Meanwhile, he gave me a Humira “booster shot” to take this Saturday in between my scheduled doses. I’m a little confused as to why he consented to this booster shot prior to seeing my bloodwork, but I’m definitely not arguing. Humira is working now so the more, the better IMO.
- GI also enthusiastically agreed to put me on an immunomodulator, either 6MP or Imuran, my choice, pending a blood test to see if I can metabolize it–apparently some people genetically lack an enzyme that is required for the medicine to work, and without it the medicine is toxic and can kill you. Yikes. I chose 6MP because it’s been around longer (more studies) and is proven safe in pregnancy and breastfeeding (still breastfeeding BG and still hoping for baby #2). I have to go to labcorp for bloodwork though *groan*.
- GI looked at my fistula from the outside and ordered an MRI to see what is going on inside. Pending insurance approval, I’ll have that done next week. He also ordered a bone density scan to see what, if any, damage my repeated use of Prednisone has caused over the years–this is long overdue. I should have this test the same day I have the MRI.
- GI threw me for a loop when he suggested I have Crohns and not UC, based on the fact that I have a fistula and he never sees those in UC patients. But I beg to differ–I’ve had this disease for 13 years and never once has it ever acted like Crohns–and in fact–all 4 of my colonoscopies have shown that my entire digestive tract is immaculate, save for the last 6 inches (my anus) which is perpetually inflamed to a greater or lesser degree. I’ve read plenty of research and personal accounts of people with UC that have fistulas, so I was shocked when he suggested that I must have Crohns because UC patients don’t get fistulas. But I’ll let it slide because he’s 90% genius and only 10% crazy.
- GI wants to put me on Uceris foam (a foam enema to be administered rectally). When I last saw him, I asked him about steroid enemas and he poo-poo’d the idea saying he “doesn’t like them”. But apparently he is ready to throw everything *and* the kitchen sink at my colon. I’m game, but nervous about sticking things in my super tender and inflamed anus.
I feel better now that my GI is clued in on the magnitude of this flare and has created a plan of action. I was going to flip out if he didn’t DO something today.
And while I accept surgery as an option, I am hoping that my colon is going to heal and stay in remission.
I am asking my colon to choose life.