You’re Going To Do What?
My first post ended when, within an hour of my being diagnosed with Crohn’s, a disease I’d never heard of before, I was in a hospital bed because my gastroenterologist said I needed to be. I had no idea what was supposed to happen other than they were “going to do their best to make me better”.That sounded really good to me although I had no idea how they were planning to accomplish that. I was then enlightened by the nurse who was assigned to my case. I was told that my GI had instructed that I be put on “complete bowel rest”, which I thought was pretty self-explanatory. I figured that meant simply no eating of solid food which would have required my gut to work. Well, I was fine with that since I had already been doing that on my own for days at a time over the past year. Food had become the enemy; I’d come to associate food with pain and suffering. Hell, there were days when all I was taking in were liquids and I’d still be in pain and running constantly to the bathroom. The no-eating was in fact exactly the plan, but there was nothing simple about that. This IBD specialized nurse then explained the process to me. My meds, which was a combination of immunosuppressants, antibiotics, steroids, and pain relievers would be administered intravenously, as well as saline for electrolytes. So far so good, but the real kicker came when she said I also needed to be fed via a nasogastric tube. Excuse me, a what? That did not sound pleasant AT ALL! In my logical mind, naso referred to the nose and gastric to the stomach, and last time I checked, those two things were very far apart. That’s when I was introduced to the delightful world of NG tube feeding which would unfortunately become a recurring event in my life.
Bowel Rest - The Process
For those of you who’ve had this done, you can skip the next few lines to save yourself from flashbacks. For those of you who haven’t, let me explain; a thin flexible tube is inserted into one of your nostrils (you get to choose which, oh joy!), down into your throat. To aid in the process, you’re given a sip of water and when you swallow, the tube goes down with it, the nurse continues to slowly push it down until it reaches into your stomach. And how does she know when it gets there? you might ask. I have no idea. Anyway, to keep the tube in place, it’s taped to your nose. Sounds comfortable, doesn’t it? Through this tube, the external end of which is attached to your “food”, you’re fed an elemental diet, which is a liquid formula containing all the nutrients your body requires and are readily absorbed with no gut activity whatsoever. (Just a bit of trivia here, this formula is what astronauts used while in space). Anyway, the idea is that while your bowel “rests”, the meds can work their magic. I was told that I would have to endure (my word not theirs) this treatment for AT LEAST two weeks. I would also have to have my blood drawn and tested daily to monitor progress. While I obviously wanted to feel better, this whole process had me really depressed because, one - I had a throbbing headache the entire time that tube was in, two - having to have blood drawn daily was a nightmare because they always had trouble finding my small veins, plus, I had to have my IV site moved every four or five days to prevent infection, and three - I really missed my family especially my son because logistically they couldn’t visit me every day. It was an extremely difficult time for everyone. Also, imagine being in a place where you are surrounded by people going through similar experiences, definitely not an upbeat atmosphere.
On The Road To Recovery? Or Not
After a very long two weeks, headache aside, I did feel a lot better - the symptoms had mostly disappeared and for the first time in over a year I was pain free; I felt like a human being again, not a walk mass of pain. After the NG tube was removed ( another delightful experience), I was put on a clear fluid diet - jello, apple juice, clear broth for a couple of days to see if I could tolerate that, then I moved on to a full fluid diet - orange juice, milk, ice cream, cream soup etc. for another two days. Finally, I was put on a solid low-residue, low-fibre, high-protein, high-calorie diet - fish, turkey, eggs, no raw fruit and vegetables, nothing with skins or seeds, no whole grains. In other words, avoid all the foods that are recommended for “normal” people. My nutritionist told me jokingly ( or maybe not) to eat the opposite of everything I wanted my family to eat. After a three week hospital stay, I was released with strict dietary recommendations and a slew of drugs which together would hopefully keep my Crohn’s under control for a long time. Unfortunately, that was not to be; my reprieve was very short-lived. What came next caught me completely unaware and veered me into unknown territory, and here I thought I’d been through the worst. Boy! Was I wrong!