So I had every intention of being more diligent this month about keeping you all up to date. The intention was there.
The energy and motivation was lacking a bit.
Earlier this month we had managed to get down to 1.5 pills but I was having some concerning symptoms including frequent bowel movements, diarrhea, and blood. Lots of blood again.
So after meeting with my doctor we agreed right now it was too risky to move ahead to something we were unsure would work, when we already know prednisone does work. Methotrexate was tossed around, but ultimately the fear was that we would try it, I would not respond well, and end up back on prednisone again anyways, but only after being in an active flare up again. So we decided until I’m stable enough to just cut the middle man out and stick with prednisone again. So I am back up to 8 pills and will taking my time weening off it yet again. Of course we tested my poop in hopes that maybe it was just an infection. Funny that infections have now become optimistic. But nope! Just my bowels being stubborn and unresponsive.
So little old Brittany got in a funk and got all emotional again because there felt like no winning. 8 pills a day and now monthly infusions of Entyvio because 8 weeks was definitely too long and he didn’t want to even risk 6 weeks.
So I found myself googling support groups in my city because I refuse to let myself fall again. But I feel myself teetering. I feel the overwhelming sensation to just throw my hands in the air, wave my little white flag, and yell surrender to my body.
I think the overall exhaustion of the holiday season is also getting to me as well. But I’m not sure what else I can really do to help my body. I just need us to be a team body! Be one with me! Love me better than I have loved you over the years!
To be fair, I should be a little better at taking care of myself. But I’m starting to get indifferent and find myself just caving into certain things by saying “well if I’m going to shit later, I mine as well enjoy it now” as a scarf down the chicken nuggets that probably aren’t the best option for dinner.
Or carrots.
Sad moment when I realized that for 5 days, what was causing me to be sick was not an infection but carrots.
WHY MUST YOU TAKE EVERYTHING THAT IS GOOD TO ME BODY. I loved carrots. To be honest I will probably still try to eat them on occasion and when I know I’ll be home all day because I refuse to accept that my body has decided NOW to reject carrots. It’s been a year, get it together. Give me some things to enjoy in life. Just some. You have already taken away coffee, broccoli, 2% milk, corn, and my hair. And partially my sanity some days.
Oh and my regular face. The moon face is strong this time around. I do appreciate the other weight gain though! I will gladly keep this.
But with awareness week coming up (Dec.1-7th) I will definitely try to be more diligent. I had even planned out some posts I wanted to share, so keep posted! And I have my fourth infusion Dec. 4th & a support group Dec. 7th so I’ll be sure to update on that.
Goodnight lovely readers!
Bee.
shitsandgiggleswithb.com 
8 pills?! So how many mg’s is that? Because if they are 10mg pills then that’s 80mg and that is alot. I’m down to 15mg and after 2+ weeks of physical/emotional struggle from withdrawal, my adrenal glands are finally starting to catch up and I feel a bit of relief/normalcy. My face is still HUGE, so much so that I can’t look at any pictures and will only feature our kid onthe Christmas card instead of a family photo. Wondering how long before I look like *me* again. I went back to the gym yesterday @ 6 weeks post-op, just walking on treadmill but hey, gotta start somewhere. Having some rectal inflammation but it’s really nothing compared to before. Honestly if you are prednisone-dependent and miserable I would wish you would accept surgery as the best option–you have UC and you can get a j-pouch and be done with this forever. I’m fine with my bag but at your age I would want a j-pouch, and lots of women your age have them and do very very well. I hate to see you spinning your wheels with the drugs, especially when the side effects are brutal and if they do work they will only work for awhile and you know you will eventually be sick again. XOXO
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Ah so good to hear from you! Thank you for your response. But gosh no, they are 5mg each- so 40mg all together, which I’m pretty sure is the highest dose you can receive. But I definitely understand what you mean about photos and missing my old self. I got super sentimental about it a couple days ago and just felt so deflated because I started wondering if I would ever be that person again, physically or emotionally. It’s hard to accept changes when you weren’t ready for them. But good on you for getting to the gym! I have just mastered walking my dog for longer than 20 minutes so its been a slow pace to get back up there haha. As for surgery, we have talked but it’s tough because it’s not a cure. My disease spread really fast and they don’t know why and the fear is that surgery would just buy time, not really stop my body from attacking itself. So we do surgery, but whats to say it doesn’t come back else where? They just really want to try and find a way to help the disease first and exhaust my options before we go down that road. And physically I’m still strong enough to try it out. So I’m willing. Trial and error does get exhausting though.
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Ulcerative Colitis only affects colon, so removing the colon and rectum essentially “cures” UC. If your docs are saying “it could come back elsewhere” then they are suggesting you may have Crohn’s, which may be true–it was in my case.
So then why don’t they find out if it’s Crohn’s instead of saying “what if” it is? They can do a pill cam/endoscopy/bloodwork/etc. Treatment should be based on evidence and not “what if”.
But I get it, you are not ready for surgery and may want to exhaust other options. Oh and FTR the max oral dose of prednisone is 60mg–I took 60mg/day for 2+ months during my flare. But my IBD Specialists that I was referred to did tell me that studies showed 40mg was about as effective so 60mg is only rarely prescribed. XO
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I did do an endoscopy and colonoscopy back in the summer and they could only find evidence of it in my colon so they’re pretty certain it’s ulcerative colitis. But everyone’s disease is a little different and I guess I don’t always align with all the typical symptoms so it makes them question sometimes. But physically it looks like uc. But I think like you mentioned, a big part if me just isn’t quite ready to make that leap but I know if I have to cross that bridge then at least I can feel confident that I tried everything I could. But oh ! Good to know 🙂 thank you for sharing and always being so open and honest !
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