Once again, it has been far too long since I posted anything… excuses are many. I have several drafts of various topics sitting in the wings – relationships with a chronic disease, working & being productive, some food posts complete with recipes and even a tattoo post! I don’t know if writers block is a thing for a less than regular blog poster, but I certainly feel stricken by something like it. Life, time, exhaustion, I could go on, but I will spare you.
But, this week, I had an extra large helping of reality and I need to put it down on paper, as it were. And, what I REALLY need is some conversation & advice from my fellow IBD warriors, friends, family and suffers alike. As I have mentioned before, I have always considered myself very lucky in terms of my disease – I am alive, I have all my bowel, can count all my notable flares on one hand and my symptoms have remained under control…. until now.
Truth time – for several months now, I have been very aware that my Crohn’s has been less in remission, more front and centre than I cared to admit. Food sensitivity is at an all time high, sending me back to the early days when I had to plan my meals & snacks around where I was going to be. Have a meeting at 1? Better eat by 11:30 so you have plenty of time to get it out of your system. Mornings have become a crap shoot (hahaha, accidental puns are the best) – I can get up at 5am and STILL be late for work because it takes 45 extra minutes before I can leave the house, and I may have to stop at Tim Hortons during my drive as well (Tims and MacDonalds are the best for bathroom stops). My stomach makes so much noise during the day that my office mates are sure it’s possessed. There is blood and mucus again, not all the time, but often. Cramping, bloating & urgency are just part of my day to day routine now, and I have just adapted to it like it’s nothing. But, I have also developed some new complications, things I have never experienced before. Abscesses, obstructions, strictures, fistulas – all new and fun words I have had the pleasure of learning about in-depth over the last few months. I mean, I have adjusted to all of this like a champ, I have changed my routines, add more time for bathroom breaks at the gym, stick around extra time after eating out, my work days are far more structured than anyone around me likely realises and in general, I had convinced myself I was A-OK.
Earlier this week though, I headed to a regularly scheduled GI appointment, and my little glass bubble of denial came crashing down around me. It was already an appointment I was dreading, as I have been debating requesting a referral to another doctor (hang tight, you will get an idea of why…), but after sitting in his waiting room for 90 minutes PAST my scheduled appointment, I was just anxious to get my new RX for Immuran, my new blood req. form and be on my way. Instead, we discussed, out loud, what I didn’t want to hear – that the symptoms I am describing means my disease is very much active. His thought is that Remicade is not working as well anymore, he casually mentions that he is going to change my medication from Immuran as a supporting drug to something new – Meth-a-something or other, it’s being more widely used now. Ok. We discuss scheduling a blood draw during my next Remicade appointment, ok. He tells me he will likely want to do a scope again soon – well that sucks, but ok. He is concerned that my abscess, which will NOT go away, is actually a fistula…. and hearing him say it outloud, I know I have suspected it for a few months now too. He wants to make sure there is no stricture developing. Damn, ok. Oh, and if this new drug doesn’t work out, we may have to look at surgery later this year. Uh…wow, not ok.
Needless to say, I left his office in a daze – prescription in hand. But it’s not until I get to my office that things start to get a little worse for me… see, it’s METHOTREXATE he has scribbled down on this piece of paper, and that sounds familiar. All he has told me is that I will take it once a week and should “think about taking Folic Acid” with it. Let me tell you, this is the understatement of the year, and I can tell you now that if I was kinda considering looking into changing GI Doc’s before, I most certainly am now….
Methotrexate. I knew it sounded familiar, I have heard of it before. Perhaps you have too – know what else it’s used for? Chemotherapy for Lung & Breast Cancers. What else? Abortions. OH, and lately, treatment for auto-immune diseases like Crohn’s & RA. I should state, before I go on, that with what I have read online on medical websites, it is supposed to have a good rate of success for situations exactly like mine – moderate to severe Crohn’s Disease that is no longer responding to a treatment like Remicade alone. Ok, positive aside… and forgive me, because right now, I am finding it VERY hard to be positive. This drug that my GI casually handed me a script for, as if he was putting me on an anti-biotic, is huge – I will say again, it’s used for Chemo freaking Therapy. Abortions. Obviously, in my case, it’s given in a lower dose, but it still causes some fairly significant side effects… nausea, vomiting, exhaustion, hair loss, mouth sores, liver problems… and it is so toxic to an unborn fetus that even males who are attempting to have a baby or have a partner that is already pregnant should not take it. That Folic Acid he suggested I might want to take? Yeah, that’s an absolute requirement, not a suggestion or option. Methotrexate depletes the level of Folate in your body, Folic Acid is the synthetic version of that is absolutely your only shot at reducing side effects.
Devastated. That was my first feeling. Something you may not know about me is that I have very much wanted to have my own baby for some time now. I am with an amazing man who is an incredible father to two beautiful girls, and I have been fortunate enough to become a step mother because of it. But I want one of my own. My baby drive has been EXTREMELY HIGH for the last year, and I was really very sure that within the next year, I could be getting the ok to get pregnant – afterall, Remicade has been approved for pregnancy, and I was quietly excited. I am not getting any younger and the news that my disease is active and the medication option given to me is used for ABORTIONS speaks volumes to my chances now. Even writing this is painful – tears have been a super common accessory for me as of late.
Terrified. That came next. I was not given any indication of what I might expect once I start taking this medication from my Doctor – I got to find that out sitting at my desk at work, following my appointment. Reputable medical websites list significant and scary side effects, but more than that, posts in forums and blogs I have found online confirm they are far more common than not. I tried to stay hopeful, since technically Immuran and Remicade both list serious side effects as well, and knock on wood, I have been very lucky there. But my hope fades quickly – I posted on my GutcheckYYC instagram, asking for feedback and experiences from others, hoping I would get many “it’s not that bad” or “it’s working for me, worth a few side effects!”. Those posts didn’t come… instead, I got stories of medication induced bulimia due to the vomiting. I got stories of hair falling out and spending 24 – 48 hours after taking it in bed because it affected people so badly. I found out it can be taken as pills (as was prescribed to me) or can be self injected once a week. I got MANY response from folks saying it might have worked, but they couldn’t take it long enough to give it a chance – 3 months of vomiting for a few days each week hardly seems worth it. Bottom line is, I have become so enveloped in these horror stories, I cannot even focus on anything else.
This weekend I took the RX to my pharmacy, after some great advice from many friends and family, hoping to get started on the Folic Acid and further educate myself. Instead, I left frustrated and even more concerned. For starters, I need a prescription strength Folic Acid, over the counter doses are not high enough… he didn’t give me one of those, so I have to wait until the pharmacy can reach his office to correct that. I am told I should be getting blood work on a very regular basis to monitor, among other things, my liver function because it could have some issues. I am told I cannot take any NSAID’s at all while on this drug – I know, I know, you shouldn’t with Crohn’s anyway, but when you suffer from migraines as I do, taking nothing is hardly an option. Bottom line here is, I am facing one of the biggest decisions I have had to make since I was diagnosed – what do I do here? I need some help. I need some folks who have had experience with this drug to reach out to me… I’m begging someone to tell me a success story with it and Remicade together. I am praying for a response from someone who can tell me the side effects are out weighed by the fact they are in remission and have seen success despite it all. I don’t know what to do here. Do I want to get on the operating table? Hell no. Do I want to become sicker and sicker as Crohn’s advances further? Absolutely not. But, do I want to take something so toxic? How do I proceed? I just do not know. As I had to leave a fun event on Friday night early because a trip to the bathroom revealed I was bleeding, I think ok, maybe I need to do this. But then the bleeding stops and I spend the weekend busy with workouts, errands and dates with my man and I wonder… if I start taking that, does it mean I won’t have the energy or ability to do these fun things anymore?
So that’s where I am at. I won’t lie, I’m kind of a mess. I tear up very easily, I am having nightmares. I don’t want to be a burden to my family, to my friends. I don’t want to lose my hair 😦 I don’t know what to do yet. Don’t worry though, I am not just sitting idle, waiting for an answer to magically appear. Part of my process is doing this blog – open conversation helps me sort stuff out, so lay it on me. I have emailed my coordinator for Remicade to ask about the process for requesting a second opinion/referral to a new doc as well. Bottom line here, whether I take this medication or not, I am a human being and do not feel as though I am treated that way – I feel like I am a number. I should be allowed to play an active and invested part in my own health and treatment plans, and that is not an option I feel I have with my current GI. I am also going to make an appointment with my Family Doctor for this week to discuss this new medication as well. I am not going to put anything in my body until I understand it.
And now, it’s time for me to go pour a glass of wine and start dinner… because if not for any other reason, I am going to do my best to lead a productive life, to the absolute best of my ability. I spent my day meal prepping, I have a week left in my 60 day challenge and I am going to crush this week no matter what. I want to thank you as always for reading this far, truly, it means the world to me.
I promise to keep you updated, and I promise I will do whatever I can to stay healthy… just don’t know which way that takes me… yet.