During my early May appointment my doctor asked if I’d had a flare-up of symptoms recently. At the time I was doing pretty well and had been in the longest streak of good days I’d had since the SIBO got really bad in December. She warned of a typical two to three month flare-up that is experienced by a lot of people on SCD. I finally went back and re-read Chapter 9 of Breaking the Vicious Cycle and found this little paragraph I’d obviously just overlooked the first time through:
Most cases begin to improve within three weeks after the dietary regime has been started and improvement usually continues. At about the second or third month, there is sometimes a relapse even when the diet has been carefully followed. This can occur if the person develops a respiratory infection or for no reason at all. Do not allow this to discourage you! Once the individual gets over this, improvement is usually steady with minor setbacks occurring occasionally during the first year.
I was sailing along around Phase 3 of the diet and finally eating real foods and adding in more foods. While I wasn’t gaining weight and was holding kind of steady I wasn’t really suffering many symptoms and my diet was much better. Then suddenly I had some gas and bloating after dinner one night around the end of May. I woke up the next day and was fine but again that night symptoms appeared after dinner. I was kind of dragging so just took it easy for a few days. On June 1st I felt pretty good, had energy and even managed to walk about 5 miles that day.
That night it hit with a vengeance. Within an hour or so of eating dinner my gut started churning and filling with gas. The bloating was pretty bad and just would not let up. I couldn’t sleep at all that night since I couldn’t get comfortable at all. It didn’t clear up overnight at all and the next day I was in bad shape all day long plus exhausted. For the next five days I was pretty miserable, it felt exactly like it did when the SIBO first hit hard in December/January or when I ended up in the ER in March. I felt like I was dying and that my small intestine was just done. I lost 3 more pounds that I couldn’t afford to lose in the first place. My other weird autoimmune symptoms began to increase and I was getting pretty foggy from lack of sleep. I would lie in bed for 8+ hours but be awakened 27-43x each night so I was only sleeping a few minutes at a time, maybe an hour max. Even heavy Indica was not putting me to sleep like it had in the past. I had no dreams at all that I could remember.
I emailed my doctor and she suggested I start on the Berberine Complex to try and knock out the bacteria that came back. The flare may have been caused by the next generation of bacteria forming up again in my SI so on the 3rd I started taking 2 caps of Berberine before each meal. I got some good advice from a friend who had been through his own bad pain situation to listen to audio books when you can’t sleep to get your mind off the pain and eventually fall asleep. It helped and I began getting a few hours of sleep in between waking up. The trick is finding a book interesting enough to distract you but not too interesting that it will keep you up. I found non-fiction works well and I’m cranking through books now and very happy that KCLS has downloadable audio books.
I moved up my doctor appointment to Wednesday. I was taken off of digestive enzymes for a while and put back on a very base diet from Intro to Phase 2 and also to stay away from anything on the FODMAP list. So I basically went back to my few safe foods – ground meats, chicken, eggs, carrots, green beans, kale, spinach, chard, bananas, and jello. For a few days I tried the veggies well cooked but was still having problems so I went back to pureeing them to make baby food again.
Yesterday I went into the GI clinic again and had a consultation with the doctor there and scheduled an endoscopy. We want to make sure there is nothing going on that has been missed previously and then if that comes out clean can add back in the digestive enzymes. I also went in to another ND for a Meyer’s Cocktail – basically a huge hypodermic full of vitamins pushed into my veins. I figured it couldn’t hurt because I’m obviously dealing with malabsorption and vitamin deficiencies. I was expecting an IV drip and freaked out a bit at the sight of a needle the size of my SonicCare toothbrush but the doctor there was great and calmed me down enough to do the injection. When I got home Catherine said I had so much more color that I’d had in days.
Finally last night my gut stayed calm after dinner, first time in over a week. I fell asleep pretty quickly on going to bed without any assistance from drugs. I decided to try and lay off the MMJ for a bit since it wasn’t really putting me to sleep during this whole episode, I’d be in couch lock but my mind was going like crazy and I was still unable to sleep so I stopped a few days ago. I did wake up at 3 a.m. after 6+ hours of sleep and put on my headphones and a new book, fell asleep again within an hour and slept another 3+ hours. I woke up this morning feeling tired from being in bed for 10 hours but with a still fairly calm gut.
Hoping that this was the last throes of this thing and that I’ll start having those steady improvements with only minor setbacks from here on out.