Since my childhood, I have always known ‘abdominal discomfort’: I often suffered belly aches, cramps and nausea. Since I also was quite ashamed of ‘bathroom related things’ and was quite emetophobic as well: a triple curse one may say.
It made me a bit peculiar: At birthday parties I didn’t want to eat fries, I shunned food products that looked ‘funny’, I always smelled my food and had a habit of frequently washing my hands in fear of catching a stomach bug of some kind. The ideal base of someone who’d later develop a chronic bowel disease: Colitis ulcerosa or ulcerative colitis, a chronic inflammation/ulceration of the colon. You can guess the symptoms: severe belly aches, nausea, frequent painful bowel movements, bloody stools and so on. A bad dream come true for me, haha.
For years, the symptoms were mild, but when I was about 17 the gates of hell slowly started opening: episodes of stomach cramping, often followed by ‘the runs’ made that I often panicked at school: I was ashamed to go to the bathroom there, so I often sat in class with pain and nausea, not hearing anything the teacher said. After a while, I started to go home sick when I felt the cramps coming on: when I was lucky, my father was home early (he worked as a teacher in another city). But most of the time, I had to take the bus or cycle home, hoping I would make it without ‘accidents’. Fortunately, I always managed to keep it in so to say, but the pain and discomfort were awful. Still, I always thought it was my own fault and I should be even more careful about what I ate. When I finally went to see the doctor, he thought about irritable bowel syndrome (IBS) and gave me medication against cramping. But that didn’t work at all.
I struggled on for years, also in university: I had started to study Health Sciences at Maastricht University (UM) in 1998. The income days were hell as well: I had to eat out in places with busy bathrooms, and didn’t want to spend the night anywhere but home. For the same reason, I kept on living with my parents. I shortly joined ‘BGK Helix’, but at the meetings we always ate together and eating meant belly aches & bathroom visits in a house crowded with other students.
I also often had to cancel appointments with friends, missed lectures and OVG’s; the bus ride to UM was often hell: I always had to make it ‘til station Maastricht to use the bathroom there (cost me a lot of guldens too haha), and then take the city bus to university, where I went to the bathroom again. Or I went to the hospital: more anonymity and less chance of other students noticing something. And it was there that for the first time I realized something was seriously wrong: I saw lots of blood.
At home, I directly went to my physiology books: Guyton and Solomon, to look at the ‘pathology’ section in the Digestive Tract chapters. And there they were, my symptoms: under ‘Ulcerative Colitis’. The rest is history: a proctoscopy (horrible experience) showed an inflamed rectum. I cried, for now I was officially diagnosed with a chronic illness: denial was now futile. I also got medication I detested: enemas with Salofalk I had to keep in all night. So shameful, especially for a 20-year-old vain girl. But the enemas did their job well for several months: the symptoms ceased and I was even able to go on a cultural holiday to Italy (by bus!) without any big troubles. Still thankful for that experience.
Unfortunately, the symptoms returned and kept returning, always worse and more frequent. I now had salofalk tablets as well, and enemas with prednisone in them. The bouts of illness were sheer terror: I spent hours in the bathroom, nauseous and feeling like my bowels would come out (and wishing they would, so this misery would end). I struggled my way through my studies including my traineeship. I graduated and had met my first serious boyfriend. Here also the shame and the ‘no I can’t stay over for dinner or the night’ gave me troubles. I also tried alternative therapies, that cost me all the money I earned with my after-graduation job as a typist, but were to no avail. I still cry inside for all the money I threw away to find a cure, and I still despise the alternative ‘therapists’ that sell their snake oil to desperate people.
In 2005, I decided to do a second study: Philosophy in Nijmegen; Ethics to be precise. I started with bioethics but ended up with German Idealism, haha. The only problem was that now I had to live in a student house there. And thus share a bathroom… I went to live in a house with two other girls; we had two bathrooms, but they often had people over and I kept on spending most weekends at my parents’ and at my then-boyfriend’s house. All the new things triggered even more frequent and severe bouts of inflammation: I now got to take prednisone orally as well. Fortunately, my specialist helped me to get an urgency note for a student apartment with my own bathroom. This made things much more bearable. I even went hiking in Slovakia (Tatra mountains) with my boyfriend: that went pretty well, but I regularly needed to ‘see the bushes’ during our hikes…
I was proud of myself and hoped things would turn out well; I even planned on becoming a mother after my second graduation. But a new storm was already coming: high blood pressure and depression caused by the high dose of prednisone I took. It even got so far that while hiking in Schwarzwald I collapsed due to a hypertensive crisis: I spent several days in a hospital in Freiburg, and was advised to immediately go home and consult my GP for blood pressure medication, since they feared I would get a stroke if I would remain untreated.
So I did. Alas, the blood pressure medication gave me more belly troubles, and my depression got so severe I developed suicidal tendencies: so it was decided that I needed to wean off prednisone, take anti-depressants and go into therapy. Another Bad Chapter for me. And so I kept struggling on. My relationship turned sour as well, so I decided to move back to the south and rent my own apartment there. I was still busy writing my Master’s thesis, so this was an extra delay for my graduation. But I did graduate again, so I was pretty proud of myself and my perseverance.
My colon, however, didn’t care that I now had both an MSc and an MA: it kept on raging. My specialists got me on Remicade-infusions and later on Infliximab: but nothing worked for long. At the end of 2011 it was finally decided that the best option for me was a total colectomy with J-pouch surgery. I was afraid I’d end up with a stoma (ahh vanity…), but I agreed to the surgery.
In the warm and sunny July of 2012, my entire colon was removed. I did end up with a temporary stoma, since something went wrong with the attachment of the pouch to the ehm ‘exit’, so it had to be reattached and needed a longer time to heal. I spent 4 weeks in the hospital: pain, shame, despair, an infection, nausea and a skin-and-bones me when I came out. But when I finally got home and got used to (taking care of) the stoma, I felt pretty good actually. Better than after the stoma-removal six months later: using the pouch was a horrible and painful experience, and I had several bouts of ‘pouchitis’, an inflammation of the pouch. For that I had to take antibiotics, and I blame those (and the narcotics) for the affliction I still suffer from today: chronic fatigue. But I will write about that in another article.
Overall, I must say that I wish I had the colectomy years before: whether it be with a stoma or with a pouch. I have to be careful with my diet and still need more frequent bathroom breaks (also at night), but I never have to go through the agony of an IBD-episode, nor take horrible medication. For stoma’s, there are great care-products nowadays, and there’s also special bathing suits, lingerie etc. for people with a stoma.
I just wish I would have better information and after-care from the hospital: They acted like I shouldn’t have to be in pain, but in the first days they sometimes forgot to give me morphine. My specialist and main surgeon was also very annoyed with the ‘get them up & out of the hospital because $$$’-approach: the physical therapist wanted me to sit up and walk around the 2nd day after surgery, so he (the specialist & surgeon) was furious when he saw me walking in the corridor so soon. I also got regular meals too quickly, even though I was still nauseous and had no appetite at all. This caused more severe nausea and vomiting, resulting in malnutrition. Despite me hardly eating and drinking, after 2 weeks they let me go: malnourished, slightly dehydrated (they didn’t give me the extra infusions the aforementioned surgeon advised) and with a low fever. 2 days later I was back: it turned out an infection had formed in a part of the pouch. This time things quickly went better: I got extra infusions and a diet with extra protein, and the surgeon monitored everything strictly.
Now, almost 9 years after my colectomy and more than 8 years after I started using my J-pouch, I am pretty happy with my life: I got used to the thing and its peculiarities, the nightly bathroom-breaks and the after-effects. The only thing that bothers me nowadays is the fatigue, low energy and recurring episodes of anxiety and depression: that all comes with a life like this, especially as an overly sensitive and perfectionist person. But I’m very happy with my current job, my house, my cat, the people around me AND with Anna and her blog!
I hope I can be of help and support for other people with IBD and IBS!
by Bernice Breuer