As some of you may know, the last half year was more indoor than outdoor. In the fall of last year, I began to feel increasingly uncomfortable and my powers dwindled to a point where I let myself be sent to the hospital. I live here on the fourth floor and had to take a break at each, really every mezzanine floor. Partly sitting, partly lying, covered in sweat. For an outdoor man and summiteer rather unusual. Start of a series of articles.
My guess, or my fears, confirmed: Crohn's disease, acute thrust. As a child, I had the last heavy spurt; in between, I lived more often, sometimes less well, with the disease for a good thirty years. I avoided doctors like the plague that characterized childhood experiences with what they then called medicine.
What is Crohn's disease?
Maybe a short explanation about Crohn's disease is needed. CEDs are chronic inflammatory bowel diseases, including ulcerative colitis and Crohn's disease. Both their cause, and thus a cure, is unknown. I have heard many explanatory approaches in the many years, meanwhile, the state of research is that the causes are probably multifactorial. The most promising approach is the idea of a bowel barrier disorder. Prof. Wehkamp and Prof. Stange are there, according to my information they are currently trying to raise research funds and develop a drug.
Crohn's disease is a bowel inflammation that occurs primarily at the junction of small and large intestine, but can affect all (!) Other parts of the digestive system. So far, both the cause and a possible cure is unknown. Only to contain the symptoms, medicine has been able for 30 years now.
The symptoms are varied and range from frequent strong diarrhea, even at night, very strong abdominal pain, loss of appetite for such strange things as joint and back pain, skin problems, deterioration of vision and general, all-inclusive weakness and malaise. The body uses so much energy to deal with the inflammation that the forces are dwindling - right down to bedtime.
Since food in the acute phase is synonymous with pain, food is out of the question. Half a toast with maybe a little butter, that's it, nothing works. I lost over ten kilograms within a few weeks. Body fat was barely there before, so the body consumed the rather sparse muscles.
Hospital, Part 1
At the beginning of December, I went to the hospital for ten days. Thirty years ago, the answer to an acute episode is cortisone. Not as high as in the past (120mg / day for a child). Now cortisone in the dose 1mg / kg body weight still has some unpleasant side effects, which are caught with other drugs.
Among them and in me very very bad memory is a side effect osteoporosis, bone softening, so to speak. In the past, after the high dose of cortisone for months, my backbone collapsed, all five lumbar vertebrae, which led to another odyssey. That was my fear in 2015 too. High doses of calcium, vitamin D both orally and intravenously should strengthen the bone. However, a new bone density measurement revealed: danger level orange to red.
Well, anyway, the cortisone struck, the intestine calmed down a bit, and in no time at all, I was released from the hospital and back home. Together with a new medication: azathioprine, an immunosuppressants. One suspects (recently, also in medicine there are fashions) that Crohn's disease is a rather special kind of autoimmune disease, so the body attacks. I was quite helpless, although of course I was afraid to take a drug from the group of chemotherapy. Now it was supposed to wait three months, if and how it works. Meanwhile, I started to cortisize the cortisone dose, at 30mg I stayed awhile.
I was still feeling very bad, but fortunately over Christmas, my mother was visiting and was able to look after me, give me shopping, encouragement and encouragement, and so on. Also my WG colleague and friend cared touching. At this point expressly: Thanks to the two dearest people! The Bettlägrigkeit (except for 10-15 times a day toilet was simply no strength there, I weighed now under 60 kilograms, despite Fresubin drinking food) I had such strong back pain, which only half opiate with opiates (tilidine, often in the maximum dose) was to come to.
At the beginning of January we drove to the Black Forest in the forest valley to the rehabilitation clinic. About the rehab, I will probably write another article. In total, I spent five weeks in rehab, despite some complications (intestinal obstruction, cortisone dose rebooted and additional antibiotics, fortunately no emergency surgery needed.) I had eaten salad, which has one, fortunately only temporary, shutter triggered, the stomach swelled, The belly button slipped horizontally by two centimeters determined) I was in the last two weeks, then increasingly better. What a blessing that the extensions were granted!
Hospital, second act
After about three weeks at home, where I regularly ate and rehearsed as good as possible, I woke up one Monday morning with severe headache and fever 39 degrees. A visit to the doctor, flu, spare, stay in bed and wait. Fortunately, I still had enough Tilidine, because with normal painkillers the headache was unbearable.
Exactly one week later, again on a Monday morning, I had uncontrollable chills. It started with goose bumps on the shins, spread to the whole body and the bed wobbled. I guess after fifteen minutes and 40 degrees fever was over the spook. In the evening the whole thing repeated itself. On Tuesday only high fever, no chills anymore. On Wednesday for three or four times, red urine, at night I drank four liters of water, on Thursday I sat again at the doctor and shortly thereafter, without detours, again in the hospital. Episode two, then.
After another fourteen days in the hospital then finally discharge. Sepsis, liver abscess, pneumonia, water in the lungs. Due to the immunosuppressants and / or cortisone, the gates were open, bacteria settled in my liver and celebrated a party. I dropped the azathioprine. Four different antibiotics, liver puncture with suction of purulent scab brought relief, Novalgin intravenously lowered the fever to "bearable" 41,5 degrees. With one or the other doctor, I'm now "by you", and the one, special, I'll invite you to a beer!
Climbed to death by the shovel
The death of the boy jumped, the second time this year. All over again: gain weight, build strength and endurance. In the meantime, my heart beats reasonably normal again, from a rest period of 140 to an 85er. Still high, but better. Cardiologist appointment is still pending. By now, I am out of seventeen pills daily (meds for the side effects of meds that fight the side effects of the meds) on a half pill. 2.5 mg cortisone, my Doc insists.
So I spent April and May physically and psychologically rebuilding both. Half a year of suffering, pain and insecurity is not one of the easier exercises, so I am careful about life. Meanwhile, I trust that not next week, any hammer comes again and I again ...
About the why?
Why am I writing this? Of course, to process, but also to inform. You, who only know me virtually and have wondered what's going on, but also and above all else CED sufferers with Crohn's disease or ulcerative colitis.
Girls, boys, even if it's all shit, you never know where it's going. The Crohn has made me who I am, without defining myself, has taken me to far corners of the world and made me valuable experiences and lessons learned important. Gratitude is certainly the wrong expression, but at least acceptance for this disease should be in it. On all, really all the tours described here, I had at least a roll of toilet paper in my backpack. In MoroccoI spent a good part of my time looking for toilet paper. Even so you can find undiscovered stones and bushes even in busy marketplaces 😉
I've decided to give Crohn the space he deserves on the blog as well. So you can expect articles or references that are related to the disease. I will write for your information and enlightenment, but also for amusement and amusement. Yes, there are also some amusing things to do in hospitals, rehabilitation clinics and the search for toilets.
Next article on the topic: Physical fitness and Crohn's disease