Grab a Spoon (IBD part 1)

If you’re not familiar with The Spoon Theory by Christine Miserandino, I highly recommend reading it.  It gives a pretty picture of what it is like living with chronic illness.

I only recently heard of it myself, and the most obvious application for me would be the IBD diagnosis, but I really felt this way for so long before IBD.  I think I felt a shortage of “spoons” from the time I was raped onward.  PTSD will treat you just like any other chronic illness.  It exhausts you.  It makes you consider every outing or activity very carefully, because you know you only have so much energy to spend.

But the rape isn’t what I want to talk about right now.  I figured I ought to tell the story of my IBD journey.  As I mentioned before, I was diagnosed and started on the basic meds, Asacol, Flagyl, and Cipro.  The first couple of days I felt SO much better and I thought that would be it.  Manage the meds and end of story!  Wrong.  After about a week I started doing worse, still dropping weight and having a lot of nausea.  I woke up one day and knew I wouldn’t make it to work as I was already throwing up.  I saw my MD that day and she gave me some IV fluids and a shot for the nausea.  I left her office feeling much better.  I called the clients I’d had to cancel and rescheduled them all for later in the week, fully expecting to be back to work the next day.  At about 4 am that night I started throwing up again and this time it looked like there was blood.  Now, for those of you who are unfamiliar with IBD, let me say IT IS NOT PRETTY.  One of the downsides is when you start to lose bowel control.  Not fun.  And sorry, but I don’t plan to sugar coat too much on this blog.

So when I saw I was throwing up blood, I called the hospital.  I kid you not, while I was on the phone with her I started vomiting again and of course, shitting myself.  Not my brightest moment, really.  They wanted me to come into the hospital, so my husband came home from work and took me in.  The terrible part- and let me tell you- this sealed our marriage right then and there- was there was a mess at home I’d been too sick to clean up and when he went home later that night, he had to take care of it.  That’s love, let me tell you!

Anyway, over the next 10 days, we tried steroids, antibiotics, and finally Remicade.  It seemed the Remicade was working so I finally got to go home, but I couldn’t believe how weak I was.  I remember trying to fold some laundry and just getting out of breath.  And none of my clothes fit.  I had lost so much weight!  Oh, and one interesting thing I wanted to note about that first trip to the ER… it was exactly 14 years to the date that I was sitting in the ER after my assault.  Coincidence?  Can’t help but wonder….

So, at that point, I knew it would be a while before I went back to work.  I was just so exhausted and I knew I just didn’t have it in me.  And as much as I tried to take care of myself, about 6 weeks later I was in the hospital again for dehydration.  I was generally using the bathroom around 30 times a day and no matter what I ate or drank, I just couldn’t keep up.  The second stay was much shorter, they gave me my 3rd Remicade treatment, lots of prescription strength Imodium and sent me home.

By now, JM (husband) and I had had a few conversations about what this was doing to our financial situation.  The reality was that we just couldn’t make it without my income.  So over the next month, we packed our life up and moved in with my parents.  They were pretty great about trying to give us our own space, but it was tough, especially on my husband who now had to drive an hour each way to work.

When I went in for my 4th Remicade infusion- these are an IV infusion that usually take 3-4 hours depending on the person.  Within 15 minutes of my infusion, I couldn’t breathe.  So that was it.  No more Remicade.  I’d developed an allergy.

At this point, it had only been 3 months since diagnosis but my symptoms had gotten worse and worse.  When I talked to my GI, I asked him if surgery was likely inevitable at some point.  He said it probably was, so he sent me to consult with a colorectal surgeon out of state.  In meeting with her, she had looked over my records and the scope results from original diagnosis.  She felt I needed surgery ASAP.  In fact, she was ready to get me into surgery the following week, but promised that this would be “curative”- that’s what they all say about Ulcerative Colitis and having the colon removed.  It will be a cure for the UC.   I was completely overwhelmed, but felt like if I was going to have to have this done someday anyway, it was better to do it now before I got sicker.  And I didn’t see the point in exposing myself to harsher and harsher meds if it wasn’t likely to fix things in the end.  I was very nervous that I might end up with a permanent ostomy, and worried about what people would think.  I worried that people would make jokes or have silly names for me when I wasn’t around.  And I remember spending the next 2 weeks staring at my stomach a LOT.  I knew it never look the same.  I loved to bellydance and I didn’t know if I’d ever feel comfortable doing it again.

Most UC patients are candidates for what is called a “J-pouch.”  This is usually a 2 or 3 step process.  My surgeon felt that because I had been on so many steroids I would be better having this done in 3  steps.  The first surgery was scheduled 2 weeks out, in September (1 week was just too overwhelming to me!).  In the first surgery, my Large Intestine was completely removed.  I had a temporary “end ileostomy” created from the small intestine.  It was kinda fascinating.  The body really does live and breathe from the inside out.  I can’t even describe what it was like to watch.  I know-  it was kinda gross too, and most people didn’t share my fascination, but it helped for me to know that it would hopefully be temporary.  It took me about 9 days in the hospital.  The surgeon said I “had a sick, sick, sick colon,” and she didn’t know how I had lasted that long.  The pathology that came back showed signs of dysplasia (a pre-cursor to cancer) and the tissue was very watery and thin and could have ruptured at any time.  So most likely having surgery when I did saved my life.  (Sometimes I have to remind myself of this!)

My system was kinda slow to wake up and allow me to eat normally.  But finally I got to go home.  Healing took a while, in fact I had a major blockage the second night I was home and ended up in the ER.  Thankfully I had thrown up enough that things sorta fixed themselves.  No one at my local (small) hospital had much experience with ostomies- especially so fresh out of surgery.

We waited 4 month before having the 2nd surgery.  And I can definitely say they were the best 4 months I’d had through this whole experience.  It wasn’t perfect… there’s a bit of a learning curve with an ostomy.  I figured it out pretty much before the next surgery which I had the day after Christmas.  This surgery consisted of having the rectum removed and then they took the end of the small intestine and created the j-pouch.  They basically stitch it up into a J shape and create a reservoir to take over some of the function the large intestine used to perform.  The pouch needed time to heal, so I still had an ostomy, but this was a “loop ileostomy.”  TOTALLY DIFFERENT.  It’s higher up in the intestine so your body has less time to absorb water and it’d MUCH harder to get a good fit from your ostomy appliances.  I did not find this as fascinating 🙂


I think I’m going to break this up into two posts because the story is getting quite long!  And for the mandatory video (sorry not sorry)- I choose this because oddly enough this song is playing in the background while I am writing now and because I just wrote about being on the hospital for Christmas and I was so, so grateful for Supernatural reruns on TNT.   So yes, it’s a SPN video (spoilers through season 3 I think.)  Here’s “On Without End (Carol of the Supernatural)” by Loki:

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