Crohn's disease is a chronic inflammatory bowel disease. It runs, luckily, in batches. This means that phases of the disease alternate again and again with phases of "quasi-health". These healthy phases are intentionally quoted here, as this disease is currently incurable and can only be controlled by strong medications.
Medicines and planning
The medis in moderate to severe gradients are pretty crazy. The so-called biologicals are extremely expensive (protein) molecules obtained with a great deal of laboratory voodoo and comparable to chemotherapies. Side effects, of course, included.
At the moment I inject every 14 days Friday Adalimumab (Humira, respectively Hyrimoz, a biosimilar to Humira), after Vedoluzimab (Entyvio) Unfortunately it did not work after more than two years. The first two or three days after the injection I am weak and weakened, prone to headaches and circulatory problems. As I said, every two weeks is the rhythm. For me, this means that I can really only enjoy every possible second weekend. If I get over it, my body will directly acknowledge headaches, dizziness, sweats and circulatory problems that are in it.
The stuff is not only pretty clean, but also awkward to handle. The syringes are cool. Over 25 ° and 1000 € or more land in the bin, as well as if they freeze accidentally.
Theoretically much is possible, including foreign holidays. There are special "passports" for the drug. The doctor attests that I am allowed to carry the stuff and that it has to be cooled. There are also special coolers with cold packs. Sounds quite good, but just go to visit the family over the weekend, already needs quite a bit of planning. How I will plan and accomplish multi-day tours at some point, when I am well enough again, is still a mystery to me. This is also new territory for doctors and the Humira service hotline for patients.
Being and planning
In periods of high disease activity, sports, exercise or just a "normal" life with shopping and hairdressing visits is out of the question. But in the phases with less or no activity at all sports activity enormously helpful. Especially after a push, in which one was forced to limit his radius of action on bed, couch and toilet, does movement in the air, in the forest, in the nature well. For far too long, you had to hold yourself locked up between four walls, and every "recapturing" the world out there is good for the soul.
I can only speak for myself here. This too is a face of the disease: every patient has a slightly different course. Of course there are many similarities, but the processes, times, distances, symptoms and torments are different and very personal for each patient - and even with the same patient can suddenly come to new symptoms with which he has never had problems before.
As soon as I feel well enough, I'll go out too. After a push that has plagued me for weeks and months, this is limited to smaller walks. On a good day, three kilometers can already be (too) a lot. An exaggeration can sometimes lead directly back into the thrust.
In the past I did not really care about the weather. But the optimal temperature range, in which I feel comfortable, has meanwhile become quite narrow. I already shivered, where others are considering whether they put on a thin sweater so slowly. The other way around: I'm already too hot when others just want to take off the sweater. Direct sunlight makes me dizzy and I get a headache. And skin cancer, also by the drug. So I always go dressed nicely long and whitened with sunscreen 50+.
Such a body simply has limited energy, and when the majority of it is claimed by the inflammation, less activity is left over. Households is enormously important because otherwise the basic energy is lacking to keep the inflammation under control. The "Spoon Theory"Describes that dilemma quite well. Slowly, very gently, so I increase the mileage.
The Crohn's disease survival kit
Even with small walks I always have a small backpack with my own Crohn's Disease Emergency Set:
- Toilet paper and a small shovel - meanwhile I'm completely painless, because if I can somehow avoid it, I will not shit my pants (anymore). "Imperative chair urge" is what you call it, and that's exactly how it is. Sometimes only seconds, maybe two, three minutes remain. But if you do not know, you will learn quite quickly. In nature, this is less of a problem, in the city rather sooner. Although I have a key for disabled toilets, but they are often far away. Some wet wipes and fresh underwear are therefore always there, so nothing helps.
- Painkillers of the stronger kind - I do not even leave the house without tilidine. Novalgin for some convulsions comes in part, depending on how I'm doing right now.
- A charged phone to call for help or a taxi if I'm stuck.
- Muesli bars, energy gels - my body is sometimes unpredictable, and so is my circulation. Sugar is essential.
- Water, because depending on the acute state, I dehydrate quickly, especially if I start to sweat and then diarrhea comes to it.
- Seat cushion to protect the already battered butt. Thermarest's Z-Seat is a foldable seat cushion that is comfortable and lightweight.
This minimal setup is also there when I am "relatively well" and I can make longer hikes. For multi-day tours, the number of toilet paper rolls and painkillers increases accordingly. Because even in remission, that is, without detectable inflammation in the intestine, I have much more often than healthy in the bushes.
As you can see, such a chronic illness involves considerable planning effort. Everyday life, so the normal when, where and how to shop, when and how do I get to which doctor, which doctor needs what documents, etc. is really exhausting. Quite apart from the miserable paperwork associated with it and the synchronization of the various specialists.