Hello everyone!
I am sorry that I haven’t written anything in a while. The combination of Entyvio and Stelara that the Mayo Clinic had put me on resulted in a short remission and I tried to live my life to the fullest during that time!
In March, I went to the Mayo Clinic for a checkup. They performed several tests and came to the conclusion that I could finally get my drain removed, my fistula had closed thanks to the combination of the two meds! I was so happy! I could finally soak in a bathtub! When I got home, I felt great! I had a doctor’s appointment in April and the doctor told me since I was gaining my weight back and keeping it on, that I could stop the TPN! They still wanted me to keep the PICC line in and monitor me to make sure everything will be okay (I’m glad they did, later on). The doctor did prescribe a couple of bags of saline in case I felt dehydrated, I could just hook myself up to rehydrate.
During this short remission, I lived like I was on borrowed time, (and I was)! I ate what I wanted to eat, drank what I wanted to drink and my house had been cleaner than it ever was! LOL. I had so much energy and I was so happy that I could finally feel like a normal person for a change, I even signed up for a lot more volunteer opportunities this summer! During this summer also, my husband was traveling a lot for work and I would have to take care of the house inside and out, so then was a good time for this remission to happen.
Around mid-summer, I was sitting on the couch late at night and I felt something very familiar. I felt a little air pass through where my fistula once was. I wanted to dismiss it thinking it was my imagination, however, I knew deep down that there was a possibility that my fistula was coming back. — So, just to recap exactly where this fistula was, my small intestine (or what was left of it) had dropped down and attached itself to my bladder fusing my small intestine to my bladder. Before I had taken the meds, the fistula was causing my small intestine’s contents to leak into my bladder, therefore, I was urinating feces while “urinating” causing severe urinary tract infections.
I kept a vigil every time I felt something that wasn’t quite right. I would note what I ate, what I drank and when I would feel that feeling. At first it was maybe once a month I would feel some air leakage. Then it got a little more frequent as time went on. I then started to notice some symptoms of a urinary tract infection (burning, feeling as if I to go frequently, etc.) At this time, I had a doctor’s appointment with my gastroenterologist. I told her my story and what I was feeling at that time. She ordered a urinalysis and told me she may change my medicine up next visit. The urinalysis for a UTI came back positive. So, for me that means my fistula is returning and is leaking again, not sure what the doctor thinks yet. She ordered me some antibiotics for that UTI. The UTI disappeared but now I feel as if I may have another.
I am not ready for what the future holds for me quite yet. I still have a lot of living I want to do. I am also trying not to get so down on myself because I know it won’t help anything. This disease is so horrible and unfair, it lets you feel good then shoots you back down without any warning. There is at least one good thing that has happened to me this summer. I made a new friend who has Crohn’s Disease also. I know I can talk to her when it starts getting too much for me or just to have someone there who knows what I’m going through and how I’m feeling. Of course I can do the same for her. I do believe that God puts the right people in the right place when it is needed the most.
Again, I’m sorry that I haven’t written in a while, but I had to get my time in while I could! I hope that everything is doing well with all of ya’ll. Remember to take this disease one day at a time, as I need to take to heart now. Please keep me in your prayers. I have asked God for one more favor and I know it will come to light when the time comes.
Chow for now,
Kelly