- Location
- Scotland, UK
Hi all. I was diagnosed with Crohn’s Disease at age 18. I’m now 23, and only now starting to take the disease seriously. I’ve recently had resection surgery to remove some strictures from my small bowel, and I’d rather like to hold on to the rest of it for as long as possible! I read a lot from your forum during my protracted hospital stay, and I found it very helpful to read about other people’s experiences with the disease. I thought it’d be nice to join your forum to perhaps give something back.
If you want the longer spiel, I was diagnosed about five years ago after a few years of unexplained (and steadily mounting!) abdominal pain. I acquiesced to a rare visit to the doctor after a teacher noted that I was drastically underweight. A biopsy confirmed Crohn’s in the terminal ileum, and I was prescribed corticosteriods (Prednisolone) to counteract the inflammation. The steroids worked fantastically, but unfortunately I went a bit mad for a while. I’m aware that I’m prone to low moods, but I felt depressed, confused, anxious; just all round awful whilst taking Prednisolone. I think that this was exacerbated by the fact that my doctor at the time was doubtful that steroids could have such an effect, so I thought that I was just over-reacting, which inevitably made me feel even worse. The experience scared me off of taking medications and from attending regular doctor’s appointments. (As an aside, I really don’t blame anyone for this. It seems that it’s relatively recently that it was widely recognised that steroids can have such an effect).
From then on, I took no medication, saw no medical professionals, and essentially tried the “grin and bear it” approach. The pain and sickness quickly returned, and I tried my best to ignore it for four years, whilst I attended university. I managed to complete a dissertation and graduate, but four years on uncontrolled Crohn’s Disease eventually took its toll. Soon after, the pain which had been very unpleasant but ultimately bearable, became agonising. I told myself it would pass, I stopped eating almost entirely, I was sick every day and I was exhausted. I dropped to 6 stone in weight. I frequently had the insane desire to cut myself open (is this normal?!). After a particularly acute bout of pain, I gave in and dragged myself to the emergency room, and was quickly admitted.
Steroids, morphine, NG tube, TPN, iron infusions, vitamin drips, different steroids, X-Rays, CT scans, biologicals: I felt like an irradiated pin-cushion. Blood tests eventually began to come back indicating no inflammation, but I still couldn’t eat without a great deal of pain. The doctors soon concluded that I had scar tissue at the terminal ileum, and surgery would be performed after my nutritional status improved. My weight continued to drop despite TPN however (just under 5 stone! It still seems unbelievable!), and the surgeons advised that I have the procedure as soon as possible. I agreed to an ileostomy and had the surgery the next day.
Woke up without the stoma I’d been expecting. My surgeon came to speak with me soon after I woke up and explained that he’d found another stricture, this time higher up in the GI tract, in the jejunum. He thought I’d appreciate it if he went ahead and removed that one as well, since it had narrowed the bowel significantly (it was “like a rat’s tail”, in his own words). He explained that he didn’t want to create a stoma so high up in the bowel, since its absorptive capacity would be seriously compromised. So, I ended up with a double resection.
I recovered quickly with no complications other than ileus: it took quite a long time for my bowel to start working again, which sent me into what I now realise was a largely unfounded panic: scary words like “bowel” and “failure” kept popping into my head. I continued with TPN for another week, and tentatively started to eat small amounts. I found that I could eat without pain for the first time in years, which took some getting used to (I was seemingly habituated to living with chronic pain, so this revelation was like discovering another planet). Then, I was quite suddenly asked if I wanted to go home. After two months in hospital, I couldn’t help but think that I might be living there forever, so this was a nice surprise! PICC line was removed the next day, was given a box of painkillers, thanked the doctors and nurses, and I was free.
Now, I’m feeling a lot better, and a lot happier. I didn’t realise how bad I was until now; I think I’d forgotten what it was like to be fit and healthy. In retrospect, I was pretty depressed. As I said, I’m taking the disease more seriously now, and so I take immunosuppressants to try and keep myself in remission. Part of me feels quite guilty for letting myself get so bad (in addition to refusing to seek medical help, I developed a nicotine habit, which I now know was probably the worst thing I could possibly have done! Needless to say, I no longer smoke). I’ve been told categorically that I shouldn’t blame myself, but at least I’m now determined to try and stay healthy, to the best of my ability. As far as I’m aware, it’s pretty likely that symptoms will recur after a few years, or even months, and that it’s ultimately inevitable. I feel I’m more able to deal with it now, though, with the help of some rather powerful drugs of course.
Kudos if you read all that! Apologies for all the waffling; I’ve not really talked much to anybody about this. Naturally, it all seems quite interesting to me, but I’m sure it’s relatively run-of-the-mill for most of you! I'm in no way an expert, but if I can help other people in some small way then that's great.
If you want the longer spiel, I was diagnosed about five years ago after a few years of unexplained (and steadily mounting!) abdominal pain. I acquiesced to a rare visit to the doctor after a teacher noted that I was drastically underweight. A biopsy confirmed Crohn’s in the terminal ileum, and I was prescribed corticosteriods (Prednisolone) to counteract the inflammation. The steroids worked fantastically, but unfortunately I went a bit mad for a while. I’m aware that I’m prone to low moods, but I felt depressed, confused, anxious; just all round awful whilst taking Prednisolone. I think that this was exacerbated by the fact that my doctor at the time was doubtful that steroids could have such an effect, so I thought that I was just over-reacting, which inevitably made me feel even worse. The experience scared me off of taking medications and from attending regular doctor’s appointments. (As an aside, I really don’t blame anyone for this. It seems that it’s relatively recently that it was widely recognised that steroids can have such an effect).
From then on, I took no medication, saw no medical professionals, and essentially tried the “grin and bear it” approach. The pain and sickness quickly returned, and I tried my best to ignore it for four years, whilst I attended university. I managed to complete a dissertation and graduate, but four years on uncontrolled Crohn’s Disease eventually took its toll. Soon after, the pain which had been very unpleasant but ultimately bearable, became agonising. I told myself it would pass, I stopped eating almost entirely, I was sick every day and I was exhausted. I dropped to 6 stone in weight. I frequently had the insane desire to cut myself open (is this normal?!). After a particularly acute bout of pain, I gave in and dragged myself to the emergency room, and was quickly admitted.
Steroids, morphine, NG tube, TPN, iron infusions, vitamin drips, different steroids, X-Rays, CT scans, biologicals: I felt like an irradiated pin-cushion. Blood tests eventually began to come back indicating no inflammation, but I still couldn’t eat without a great deal of pain. The doctors soon concluded that I had scar tissue at the terminal ileum, and surgery would be performed after my nutritional status improved. My weight continued to drop despite TPN however (just under 5 stone! It still seems unbelievable!), and the surgeons advised that I have the procedure as soon as possible. I agreed to an ileostomy and had the surgery the next day.
Woke up without the stoma I’d been expecting. My surgeon came to speak with me soon after I woke up and explained that he’d found another stricture, this time higher up in the GI tract, in the jejunum. He thought I’d appreciate it if he went ahead and removed that one as well, since it had narrowed the bowel significantly (it was “like a rat’s tail”, in his own words). He explained that he didn’t want to create a stoma so high up in the bowel, since its absorptive capacity would be seriously compromised. So, I ended up with a double resection.
I recovered quickly with no complications other than ileus: it took quite a long time for my bowel to start working again, which sent me into what I now realise was a largely unfounded panic: scary words like “bowel” and “failure” kept popping into my head. I continued with TPN for another week, and tentatively started to eat small amounts. I found that I could eat without pain for the first time in years, which took some getting used to (I was seemingly habituated to living with chronic pain, so this revelation was like discovering another planet). Then, I was quite suddenly asked if I wanted to go home. After two months in hospital, I couldn’t help but think that I might be living there forever, so this was a nice surprise! PICC line was removed the next day, was given a box of painkillers, thanked the doctors and nurses, and I was free.
Now, I’m feeling a lot better, and a lot happier. I didn’t realise how bad I was until now; I think I’d forgotten what it was like to be fit and healthy. In retrospect, I was pretty depressed. As I said, I’m taking the disease more seriously now, and so I take immunosuppressants to try and keep myself in remission. Part of me feels quite guilty for letting myself get so bad (in addition to refusing to seek medical help, I developed a nicotine habit, which I now know was probably the worst thing I could possibly have done! Needless to say, I no longer smoke). I’ve been told categorically that I shouldn’t blame myself, but at least I’m now determined to try and stay healthy, to the best of my ability. As far as I’m aware, it’s pretty likely that symptoms will recur after a few years, or even months, and that it’s ultimately inevitable. I feel I’m more able to deal with it now, though, with the help of some rather powerful drugs of course.
Kudos if you read all that! Apologies for all the waffling; I’ve not really talked much to anybody about this. Naturally, it all seems quite interesting to me, but I’m sure it’s relatively run-of-the-mill for most of you! I'm in no way an expert, but if I can help other people in some small way then that's great.
