Hello dear friends,
I seem to be following this pattern of a once a month update…. maybe this can be my new years resolution. Become better at updating my blog.
But I am here to say, I have survived another scope. Please, please, hold your round of applause. I know it’s a miracle.
No actually. Scope preparation may become the death of me.
But let’s rewind.
Back at the beginning of the month I had my one month follow up with my specialist. We were trying to play that really fun game- what is causing your symptoms? In September and part of October we chose Endometriosis for 500, hoping that my flare up with that was also just making my UC a bitch to deal with.
–Signal buzzer- we were wrong! Turns out it was a trick question and was actually both because my UC was in fact getting worse. At first I was in this optimistic denial. I had told him that things were okay. I was still only going 4-5 times a day so that was good, right? But as we started talking about other symptoms and as I watched concern cross his face, I then started better listening to my own words. Hmmm was this normal?
- Still bleeding every day at least once a day
- inconsistency between diarrhea and solid poops
- there were 4 separate occasions where I was overcome by this overwhelming sensation to have to puke and had intense abdominal pain. Less than 5 minutes later I would run to the washroom and I would pass a lot of bright red blood.
- Was starting to get more tired
- Joint pain was coming back- but differently. I would wake up feeling like I did an intense workout and then as the day went on and I moved around I would feel better (potentially early signs of arthritis BTW)
- Hair loss was getting out of control again
- I was barely making it to week 3 before Remicade and we are doing it every 4 weeks. The norm is 6-8 weeks.
- I was getting nauseous and losing my appetite
- I lost weight. Like a lot. At the time I was down to 90 lbs. Now I am at 87.9 lbs (that .9 makes me feel just a little better so leave me be).
Okay…. so there was something going on and it clearly didn’t look good. But how did I miss it all? Because I got too hyperfocused on my poop count, forgetting that poop is like maybe 1/4 or 1/6 even of the disease. There are so many other things that become effected due to the illness, and I was ignoring it.
So we booked a scope. At the time the scope would help us determine whether or not I stay on Remicade and just amp up my dose or we scratch it entirely and move on to clinical trials of Xeljanz. Either way I was showing signs of something going wrong, so I knew to not expect good news.
Fast forward to yesterday where I had the day from hell. But I feel like I say that every time I have to do a prep. Laxatives FUCKING suck. And this girl had to take 3 at the same time right in the morning. But even before I started the prep my body was all off. I woke up at 5:30 am to run to the washroom 4 times- each time passing an obscene amount. This resulted in me having the shakes and just feeling so nauseous. Perfect way to start prep. So I took the day off because there was no way I was working with kids with the highest potential of shitting myself. It was a damn good thing I did. I spent most of my day in bed or in the washroom.
Now before people get all judgey asking “well why wouldn’t you take the day off work” it was BECAUSE they’re supposed to be slow release laxatives. They are supposed to take 6-8 hours, so I figured I would be golden for most of the day. LOL. They took all of 2 hours to kick in- and by kicking in I mean waking up from my nap with an intense pain in my stomach and running to the washroom praying something would move to just take the pain away. Overall I went to the washroom 16 times, puked 3 times, cried 4 times, and napped 3 times. I also got a raging head ache from dehydration BUT couldn’t hydrate myself because I would puke it up. I was done with life.
Then I had to wake up at 4:30 in the morning to give myself the enema of hell. I would like to know WHO came up with these preps? Did they even have UC or Crohns? I’m sure for a healthy person it wouldn’t be the end of the world. But these enemas are a sodium phosphate solution. SODIUM. As in salt. They want you to shove this bottle of salt up your ass and squeeze not one BUT TWO 130ml bottles of it over your poor ulcers and sores. You are literally pouring salt into a wound. It has honestly been traumatizing for me. I never finish one bottle, let alone two and I am actually terrified. My body knew. I was shaking before I even started it because my body was ready to wither in pain. I stopped after I started passing just pure blood.
Scope was great because I was put under. Don’t remember a thing. And my results were not the worst. Basically it’s still affecting 30 cm of my colon (so just under 25%. Fun fact did you know your colon is 5 ft long, or 1.5 meters, or 150 cm). It has shown that it is spreading a little, so we are catching it at a good time. But we are down to moderate inflammation instead of severe which is an improvement and there are patches that have healed (horray!). But Remicade has ran its course. We have changes since my last scope in July and that was enough evidence to show that I have peaked at my Remicade levels. So clinical trials it is. But my body is in a weaker state than we would like so I will not be talking to my doctor about the clinical trials for another 2 weeks. In the mean time I will be back on prednisone, which I am okay with. I for one, need to gain weight, and two, just want to feel better again and I tend to feel better on it. It will also get me to a better place when I start clinical trials, which I think will really help me as I transition. Because my body is already mad that we haven’t had Remicade.
So here we are friends. New treatment and new directions.
Hopefully it works.
I will have my chubby cheeks just in time for Christmas, which seems to be a new tradition since last year I had them as well right around this time!
Hope all is well with everyone else.
7 thoughts on “Where are we now?”
oh gosh that prep sounded awful! Glad to hear the results were positive though and that you will hopefully be feeling somewhat better by Christmas!
It is absolutely terrible Haha I’m more than certain they have not considered how people with IBD would feel on it ! But thank you 🙂
At least you got a break and got to be out for the scope?
It all sounds so frustrating. I’m so sorry your body won’t just give you a break Bee!
Thank you! I mean it’s a little frustrating but we are also really close to getting somewhere so it is also a little exciting to see how far we have come compared to last year
The surgery is really not so bad Bee… If you are already at clinical trials just 2? years post-diagnosis then you are going to end up with surgery at some point–has your doctor even bothered discussing it with you? I mean, you’re young so I get wanting to wait but meanwhile your quality of life is sh*t and is this really how you want to spend your 20’s? You could have surgery and be out there climbing Mt. Everest without worrying about your next infusion or where a toilet is–your 20’s are for friends, fun, and adventure. I want that for you!!! XOXO
Hi! We have talked about surgery and I’m fortunate to have a very extensive team. My family doctor, IBD specialist, and Gyno are all working together to ensure I have the most options now and later. Surgery at this point for myself brings a lot of complications as I have other autoimmune disorders at play as well. The possibility for me to have children with my particular case would become very slim once I choose that route, so for now I would like to wait a little while longer. My doctor has always been amazing at allowing me to explore all my options and he will follow suit. I understand that I may just be avoiding the inevitable, but I find comfort in knowing that I gave it everything I could and tried all my options. I’m also at a point in life where I’m doing okay. I have been able to work full time at a job I genuinely enjoy, I am through my second year of my masters program, I have been able to workout again (although on a temporary pause), and while I haven’t been able to travel abroad, I have been able to travel within my own country and do things like visit family I haven’t seen in awhile. My 20s may have not been the most glamorous, but I’m only 24. I still have time to make the most of it. And while it hasn’t all been sunshine and rainbows, I have taken a lot from this experience. I could be better, but it could be worse. BUT I always appreciate how supportive you have been and understand. I have thought the same thing many times, but for now this is my path. I guess I like to make life a little more difficult, but I am up for the challenge. PS I’m not sure if I ever wished you a formal congrats!!!! I will need to catch up on your posts to see how your little peanut is coming along!
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Oh I see, there are other factors as well. I have a friend in her 20’s who just had a hysterectomy due to endometriosis, and I can empathize (because of my prior history of infertility/miscarriages) how hard it must be to give up the option of pregnancy. I also have friends who worked with gestational carriers to create their family, and they had a good experience–though this was in the US and I know Canada (legally) is much harder to have a gestational carrier. I also know a lot of j-pouch and ostomy moms who were told they’d never conceive naturally, but then they did, and others for whom IVF worked to create their families. To be realistic, I also know of 2 women (out of thousands) with j-pouch/ostomy who were unsuccessful with IVF, and one of them adopted. I know it’s scary to think you may struggle to have children, but I’ve seen a lot of women (both with and without IBD) struggle to create their families and then succeed in different–but equally wonderful–ways. So there is always hope, no matter what.
As for me, I’m doing great with baby #2! We are moving from the deep south to the far north soon though, and that is stressful (trying to plan a move to a place I’ve never even visited and sell a house during the holidays–I do not recommend it). XOXO