UC Has Taken Over My Life and I Don’t Know What To Do?

Introduction:

Amanda, diagnosed August 2011 with ulcerative proctitis, 20 year old Molecular Biology/Women’s & Gender Studies undergrad living in the SF bay area. I’m currently navigating school, working in a lab, activism, and SCD, while still attempting to have a social life.

Symptoms:

bloody Diarrhea, 3-6 times a day
abdominal cramps
gas
headaches and constant thirst (I think these are side effects of the Canasa)

 

I don’t know what to do. I’m 20 years old and I feel like being sick has taken over my life.

Let me back up.

This past spring/summer I started noticing a little blood. I din’t think much about it until it got worse to the point that the amount of blood started to freak me out. I didn’t really have any other symptoms except feeling exhausted by 3pm everyday after getting a solid 8-9 hours of sleep.

Fast forward to end of July/August and I’m getting a colonoscopy. And the nurses say “oh wow, you’re our youngest patient!” thanks. I was already aware that this was not normal for someone my age and I was freaking out about not knowing what was going on with my body.

And then came the diagnosis and a new doctor, this time a GI. He said it was ulcerative proctitis, which is uc but just constrained to the last part of the colon/rectum. Also, apparently my great-grandmother had ulcerative colitis. My Dr. said my prognosis was good and I might never have a problem again. He put me on Apriso and enemas. And after the drama of getting enough meds to take with me, I left for 4 months of studying abroad in Beijing, China. The meds worked and everything seemed great!

China was an incredible adventure. It was even more of an adventure in late October going to the hospital in Beijing after I went into a bad flare/traveler’s D, after midterms and a week in southern China, and needed IV fluids and medications. They gave me mesalamine suppositories and I was still on the apriso. Thankfully the flare went away and I was not the only one in my program with the big D! just the only one losing blood…but having ulcerative colitis on my study abroad definitely affected my stay there. When I’m in flare I get tired really really easily and not having energy to go out and experience things sucks. I ended up doing a lot less traveling outside of Beijing because I was worried about my UC flaring or being away from my program staff in Beijing who could help me navigate the hospital if I needed to go. But, at that point I was confident that this whole uc thing was temporary and I would be in remission for the long run.

Fast forward to the present: I’ve been back in the US now for 3 months, and they’ve been a roller coaster.

I’ve been in mini-flare off and on since coming back, and for the past 3 weeks I’ve been in full symptom flare. 2.5 months ago I started the SCD diet and I think that it’s helping, but not working the way I hoped it would. This flare I’m not as exhausted as I used to be and I think that’s because of the SCD. However, I’m back on the Canasa mesalamine suppositories for the last week, and the past few days I haven’t seen any blood! My other symptoms have only slightly lessened.

However, since I started back on the Canasa I’ve been having headaches every day that won’t go away with tylenol and water. I muddled my way through a final presentation this week with a headache and I forgot to say about half of my points. Plus, I feel constantly thirsty/dehydrated. As soon as I drink something I’m thirsty again 5 minutes later. I think I’m drinking about 12-16 glasses of water/watered-down juice a day and it’s going through my system annoyingly fast. I have final exams this week and I’m trying to study despite the headaches and needing to pee every hour, but I don’t know what I’m going to do once I actually have to sit for 3 hours straight. I know I should talk to each professor before hand but how embarrassing!

I know I should call my GI, and I’m planning to in the morning when his office opens, but what’s he going to say? Here, I’ll switch you to another expensive drug that your insurance doesn’t cover that has potentially worse side effects? I love this site and hearing other people’s stories but they make me worry about what is in store for me as my uc keeps getting worse. I don’t want to have to go on drugs that are more hardcore than mesalamine, but what if I have to keep trying all of these drugs and nothing works and all I get are bad side effects? I feel like this is taking over my life and I don’t know what to do about it. While all of my friends are getting drunk at parties and living normal lives, I stay in because I’m afraid of what the alcohol will do to my already unhappy colon and I am worried about not knowing if they’ll be a bathroom at whatever party they’re going to.

All of my friends and family have been really supportive but I feel like most of my friends don’t know how to deal with the new me.

UC has changed me. I used to be young, extroverted, and fun. Now I’m a 20 year old living like a grandma. I stay at home and cook and do homework because I’m too afraid of my uc embarrassing me. The only friendships I maintained are the ones close enough to still come hang out with me, even though I’m not the same as I was before. It get’s old when I have to cancel plans again and again if I’m not feeling well enough to venture out. Thankfully, I have a good friend who has been battling cystic fibrosis for his entire life so he really gets it. But besides him, I feel completely alone in this. I’m just scared that this new reality is here to stay and I’m powerless to change it.

Any advice or words of support would be greatly appreciated.

Medications:

Canasa 1000mg (Mesalamine suppositories)
Apriso 1.5g/day

written by Amanda

submitted in the Colitis Venting Area