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    Re-mission: Walking with Crohn's disease?

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    Re-mission: Walking with Crohn's disease?

    About the difficulties of an active outdoor life despite Crohn's disease

    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.


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    Comments

    1. Hello Sven,

      Since I have celiac disease, I also have to plan each of my days, excursions, holidays and family celebrations, otherwise there is nothing to eat. I have to eat strictly gluten-free and that is not something that is of course everywhere. Without a gluten-free diet, my intestine also strikes with an incalculable outcome (in the double sense), long-term consequences and secondary diseases.
      Crohn's disease is another number because of the relapses!
      I wish you a lot of strength and good health.

      Greetings, Sibylle of miteigenehaenden.wordpress.com

      • Hi Sibylle,
        thanks for your comment! It is already a cross with health: "There are a thousand diseases, but only one health." (Ludwig Börne)

        I can feel what it's like to be careful about eating (and what happens if you're not careful). This is usually not spared me either. However, I always have phases in which I can eat almost anything - that is the "advantage" of Crohn's disease and the gradual course.

        How do you like the linked "spoon theory"? Do you also find yourself in there again, or is celiac disease with a strict gluten-free diet so well under control that it does not matter? Know otherwise only so "gluten-free and low-lactose hipster" 😉 And, in fact, I was only in the rehab, and lo and behold: FODMAP diet is good for the intestine, and FODMAPs are mainly to be found in connection with gluten!

        Have a nice blog, will certainly try one or the other. I really like the basic idea of "Downshifting"!

        Best regards,
        Sven

    2. Hello Sven,
      Thank you for your praise!

      my diagnosis was a screening test, because I inherited the disease. We had with the daughter a diagnostic Tripp of over 14 years. It's bad if you do not know why your child is so sick and you can not help.

      I never had any really noticeable complaints, but I suffered very early from complications, without knowing where the real cause lies. I now live with these complications and the now diagnosed celiac disease. My problem is less the gf food, as the sequelae.

      No, I'm not complaining. Is just the way. Mostly I get along quite well. I can already find myself in spoon theory, because I always live with care so that I do not just have a spoonful of energy at my disposal.
      Downshifting is one of the consequences. When your health is not so good, you have to take better care of yourself. I need the time for rest, to take care of (my) healthy food and to enjoy life while still learning to enjoy. It is a process ...

      Greetings, Sibylle

      • Oh dear ... I have to think about my poor mom and what she has been through with me. I was only 12 when the Crohn was diagnosed and during that time we went through a miserable, year-long odyssey together. This is very very ugly, but also welds together immensely!

        Best regards!

      • Hi Christof,
        Thank you for your nice words!

        In our (benefit) society it is difficult to live with an invisible disability. Therefore, for a long time I have downplayed the disease in public or even completely denied it. After a painful year in 2015, I decided to give the disease its place at aufundab.eu and to tell something about how it can still live. Maybe I'll be able to clear up something about Crohn's disease and maybe I'll even be able to give some courage to those affected - and look forward to the remission phases!

        I have been in contact with Franz von Alpine moments since yesterday! - about this article here 🙂 If we both feel better, we want to meet and chat and wander. Personally, the contact with other patients in the rehabilitation clinic was already very good, you can then better assess your own situation better and generally does not feel so alone. Therefore, I am looking forward to Franz and his experiences, a like-minded mountain people 🙂

        Many greetings,
        Sven

    3. Hello dear Sven,

      I find your blog totally inspiring. My uncle had Crohn's disease and so I can imagine how it is. With my little irritable bowel, can not say yes. But as a chronically ill somehow already. Through my MS, I also regularly struggle with new challenges. Had also thought of starting to climb and your contributions really motivate you to live your life as you would like it.
      Everything works somehow ... just different ...

      All the best for the future ! Keep it up!
      And I thank you for following my page. 🙂

      best regards
      Frieda

      • Hallo Frieda,

        danke für das tolle Lob! Tut gut – und mein Ziel ist somit erreicht 🙂

        Klettern kann ich echt nur empfehlen – und zwar egal in welchem “Schwierigkeitsgrad”. Wichtig ist nur, dass Du einen guten Kletterpartner hast und die Sache mit den Sicherungen und dem Seil am Besten in einem Kurs lernst.

        Best regards,
        Sven

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