It has been a while! I will give a medical update, then a general one. I also have to share some sad news.
The great thing is that I don’t have fatigue, and I don’t have fevers. I eat well, I even started with fiber and lactose again, and food tastes good. I gained a couple of kilo’s of weight.
However, I still have some pain, varying from 2 to 5 out of 10. Over the last months the pain has changed. It is now present in a bigger part of my stomach, and it is of a burning kind. They did two FeCal tests (fecal calprotectin) which measure the presence of inflammation/sores in the intestines. The test results showed moderate elevation. All these factors (pain and calprotectin levels) might be caused by Graft Versus Host Disease (GVHD- the new immune system attacking my intestines). To find out if that is the case the doctors at Rikshospitalet have scheduled to do an enteroscopy on Friday th 19th. The biopsies they will take will show if there is GVHD. If there is, I will most probably have to increase the Prograf (tacrolimus- which suppresses my new immune system) and to start taking prednisolone (which will help fight GVHD).
I have been to my eye doctor and he confirmed that I have what he called an ‘extensive’ cataract (grå stær/grauwe staar) in the lense of my left eye. He advised to get the lense replaced as soon as possible. It will take a couple of months before it will get fixed.
I have pain in some of my joints (heals, knees, hips, shoulders and hands). Sometimes I move like an old lady. I also get stiff in my muscles after I take a walk. These might also be signs of Graft Versus Host Disease. If the enteroscopy shows GVHD, and my medication is adjusted, this probably will help on the joints too. I might also need to start with methotrexate once a week.
I am numb on the left side of my left foot, and if I turn the foot inwards, I get the same feeling in my foot as when hitting the funny bone. Same thing happens when I slightly touch a spot on my left hand: My index finger is on fire. Doctors say this is a common effect of several of the medications I have been taking, and that it most probably will go away as time passes.
Like I mentioned above, I love that I don’t feel fatigued, I don’t vomit, I eat normal food, and food tastes good.
In addition I started swimming again. Swimming does not hurt so much in my joints, and it does not make me stiff afterwards. I found out that I still can swim 1500 meters in 40 minutes.
I enjoy having people over for dinner. We had a nice Halloween party for example. I remember last years Halloween as the start of my last severe flare of Crohn’s. This year it was all about the fun. A buch of kids made me ‘even more scary looking’.
”Now you look even more scary, mommie…”
We celebrated Sinterklaas (‘Dutch Christmas’) on December 5th. Everyone got lots of presents with a little poem hinting towards what’s inside. It’s a lot of work, but all three kids still love it, so I do too!
Sinterklaas: Lots of small presents- with poems.
And now we are preparing for Christmas. Cards are being written, giant stars are lit in the windows, and we are going to chop a Christmas tree this weekend, just across the road. We will not have a real tree in the house this year because of the possible germs it might contain, which might make me sick, but we will put the tree outside. This means we can chop a big one!
Lussekatter, traditional sweet rolls baked on December 13th, Saint Lucia
Following-up on the kids makes me feel great. They’ve all been to the dentist’s for example. A year ago, I would not have been able to do all these normal things.
The youngest one had crashed into someone and got a loose tooth. Mommie was there.
Finally I have to mention som sad news. Our neighbours here in Norway, who are from Seattle, decided early this fall to move back to Seattle in January 2015. One of the reasons was that they then could be closer to grandmother, who needed more help. Sadly enough, grandmother died late October. Grandmother had Crohn’s disease. She had surgery in the summerof 2014 and received a stoma (utlagt tarm). However, her abcesses and fistulas did not calm down like expected, and she even got more abcesses. She suffered from multiple infections. She died from complications resulting from the Crohn’s. Here’s a picture of her and her daughters, taken approximately 35 years ago. She only got 63 years old.
About this picture, written by Jen: This is my mom, my younger sister and me in 1978; probably around my mom’s 27th birthday. My sister is 8 and a half months, and I am 3 years old. My mom passed away two weeks ago from complications due to Crohns disease. She was 63; way too young to leave this world. I miss her everyday, and still can’t believe she won’t be there when we move back to Seattle next month. Mom was strong and brave as she raised two daughters and doted on her grandchildren more than humanly possible while ensuring this disease for most of her life. She was very sick at the end, spending most of the last 6 months in the hospital. At least she is no longer in pain now.