Face-Palm Miscommunications

Having had Inflammatory Bowel Disease for 20 years as of this coming November, diet is always a massive obstacle and an ever-changing part of disease management. 

Over the years, giving my intestines a break by having clear or full fluids only for a few days is pretty common. During every flare-up, I immediately cut out most foods. Usually I'll start by dropping to soft foods, then full fluids if there is no improvement in symptoms, then clear fluids if that still doesn't work. Then, over the following weeks, I will slowly begin to try foods from the next category up. If it works, I try again the next day. If it doesn't, I go back down. 

It is a constant battle. 

My Crohn's has been quite unruly lately. The symptoms are not as severe as when I was in my teens, but the discomfort and bathroom issues are very similar. 

Over the past several years, once I drop down to eating bread and rice for a few days, things tend to settle down. In fact, for plain rice to cause a problem is pretty rare. Alas, this time rice isn't quite doing the trick. Luckily for me, full fluids are. 

When I go on full fluids, that usually means Boost, popsicles, yogurt, pudding, ice cream, smoothies (sometimes), soup (sometimes), and cheese. 

Boost is (and has been) a staple in my kitchen since I was 14 years old. There is only one flavour I like (and an additional one I will stomach if necessary), so the Original Chocolate Boost is a classic go-to, and is fairly well documented in my chart. 

Well, my GI's office called recently. I was supposed to have my annual checkup in the coming weeks, but with everything going on, it can't happen. It is what I was expecting, of course. With decent bloodwork, and no symptoms of blood or incontinence, it means that it is still manageable, however uncomfortable. I did mention that it has been acting up over the past few months, but that it did not seem to be urgent. When she asked me what has been going on, I explained that the only foods I have been able to manage without much pain are Boost and some other fluids. Everything else is causing discomfort, and a lot of it. 

That's when she said something odd, but that I didn't quite pick up on until a few days later. When I said:

"All my body seems to be able to handle is Boost and full fluids. Everything else hurts"

She said: 

*laughing* "Well of course everything else hurts, you're essentially sterilizing your intestines." 

At the time I thought she meant that because I was taking in such little variety of food, that I was kind of cleaned out. 

Days later it dawned on me.... She thought I kept saying BOOZE and not BOOST. 🤦‍♀️

So the receptionist at my GI's office now thinks that I am drinking alcohol most days to help with a long-term flare that has already lasted a few months. 

Oh boy. 

Although, with them being so busy on the front lines of this pandemic, that conversation may have been forgotten shortly thereafter. Otherwise I will have some explaining to do at my next appointment with him. 

Boost. 

Boost is what I drink when my Crohn's and Pouchitis are acting up. 

Not booze. 

Boost. 

Ugh. 

Long Recuperation

Big events take long recuperation times.
Mistakes take even longer.

These days I am starting to feel more like myself since the wedding weekend. I am still recuperating - energy mostly - but I am getting there. We were able to enjoy Thanksgiving festivities over the weekend without too many tears from pain, which we are thrilled with.
At home, however, things are still slow. We still have not fully unpacked from the wedding and our basement is a total disaster with wedding supplies. We still want to get through all of the photos and post them and we both have lists of things we need to get done, things we need to pick up, but neither of us have the energy. We have been sticking close to home, resting for the most part, and just enjoying being together.

There's an even longer recuperation that is a little tougher to take lightly.
With new Cortisone injection appointments this week and next, it reminds me that one miscommunication/mistake is still wreaking some havoc.
6 months ago I had my first ever SI Joint Cortisone injections. I was informed that I could not be taking certain medications for this injection, and was told I would have to halt this treatment two weeks before the injection and then not begin them again until the second injection another week later. This treatment has been vital in helping to control my IBD.
Within three days being off of my vital medication, I had already lost quite a bit of weight, and my intestines stopped functioning normally**. I began experiencing symptoms (terrifying symptoms) that I had not experienced in years. Suddenly I was carrying extra clothing in my purse, I had to buy Depends, I could not eat much solid food (if any most days), and I even starting having incontinence during the day. Zero control. This is obviously in addition to the pain, cramping, blood, burning acid-like stomach discomfort, vomiting, and just general fatigue and weakness.
By the time the first two weeks were over, I was legitimately fearful of what may happen if it continued much longer. The idea of further surgeries, complications, or recuperation time was frightening. Was it even worth the short-term relief in SI Joint pain?
It took me and my physicians over 12 years and two major abdominal surgeries to get my intestines to the level of control I had. Before these injections.
So I emailed my GI specialist.
Turns out, I did NOT have to stop taking my medication for these injections because of the reason I am taking them. So I was able to go back on my treatment before the second injection.
By that point, there was some damage done.
It has been 6 months and I am still nowhere near the place I had been before stopping that treatment for two weeks.
Two weeks of missed medications and I am still recuperating 6 months later. At the rate things are going, I expect this resurgence of symptoms to slowly improve over another 6-12 months, if I'm lucky. Although the incontinence during the day has mostly improved, overnight issues still require Depends sometimes (although it is never predictable), and only in the last month have I been able to introduce more vegetables without a catastrophic fallout.
Even on our wedding day I had no more than 6 bites of food after 12pm. My intestines just could not handle it. Plus, I really didn't feel like risking urgency while in a puffy white gown that I had to step our of for each bathroom break. (Although I do have to admit that I am pretty proud of the system I had for my bathroom breaks). I'll write another blog about that alone.

Recuperation times are different for everyone, for every situation, for every disease. What is frustrating is when there is a miscommunication that results in looooooong recuperation times. It can be awful some days, and if I think about it too much I feel quite angry about it.

Hopefully it will improve over the next few months. Fingers crossed.

**normal function for me is bathroom breaks 10-15x per day, maybe an accident once a month overnight, but with good control throughout the day.