Hi everyone
So I'm new to this forum although in September I will have had Crohns Disease for ten years (wow - hadn't realized it was that long). I was diagnosed when I was 12 years old after experiencing diarhhoea and blood in my stool for about a month. We didn't really pay that much attention to it until I had the most crippling stomach pain, after a couple of days of that we called in the family gp who referred me to a pediatric surgeon, as well as a gastroenterologist who promptly put me in hospital. I was in that hospital under their care for two weeks in which I started losing weight very rapidly and went from 50kg to 42kg. The details are a little blurry but as far as I remember I was put on tablets (pentazza) as well as large amounts of prednisone. I developed the usual chipmunk face from the prednisone as well as scarring on my hips and lower back, which I still have today although they have faded a lot. I also had hair loss, which I am happy to say went away once I went off the prednisone a few months later.
I did not have a great experience with those doctors, although they both have good reputations. To this day I do not really understand what they were thinking as they let me eat whatever I wanted, including pizza one of the worst things a person with active Crohns disease can eat I guess (due to the high fat content). They also misdiagnosed me with Ulcerative Colitis, which made it difficult for me to receive the right treatment and discharged me from hospital two weeks later without having given me a full colonoscopy. 10 years later I have very much come to terms with their mistakes but it did make what was a very difficult time much harder.
After returning home I was still in huge amounts of pain and continued to lose weight, despite my mom's best efforts to get me to eat. After a week of this my mom contacted another gastroenterologist who was recommended to her by a friend whose son has Ulcerative Colitis. When I met with him he took one look at me and told me to go straight to hospital without even going home first, he also told my mom that there was a 60% chance I would need to have a colectomy. I was in the second hospital for three weeks and taken off all food for 10 days and fed intravenously. I also began having infleximab infusions and shortly after I was discharged I had my third, which put me into remission. I was very fortunate that I did not have to have the operation.
I then began the process of building back muscle and putting weight back on (which involved taking lots of shakes and supplements). My family were incredibly supportive during this time and I don't think it is possible to have had a better support system, in those 5 weeks of hospitalization I don't think I spent more than an hour alone and either my mom or granny slept in my room every night. Once I was discharged I got better relatively quickly and stopped the infusions as well as the prednisone. I am still with the same doctor, who is absolutely incredible and has never ceased to provide me with top quality care for the last 9 years.
A few years later when I was about 17 I had a relapse although it was not nearly as bad as the first attack and was put back on the infusions. I am still on them today (I am now 21) and go every 6 weeks. I am mostly okay although I get incredibly tired when I am due for an infusion (wondering if this happens to anyone else?) I also get cramping from time to time. At the moment I am a few days overdue for an infusion because my medicine hadn't been delivered when I was scheduled to go. I am struggling a bit as I am feeling exhausted, which makes it a bit hard to function properly and I have had to go to the toilet a lot more than usual the last few days. This is not usually the case but I am looking very forward to having the infusion next week and feeling better.
As for diet I do eat very healthily and have recently started having a lot more fibre, which has helped a lot as I do get very constipated. I can eat pretty much everything though (in moderation) although for the most part I stay away from creamy and rich foods as well as alcohol as I usually feel sick and crampy after having them.
Looking forward to seeing whose out there on this forum and to hearing your responses
I don't know many people with Crohn's so it will be great to hear everyone's stories.
So I'm new to this forum although in September I will have had Crohns Disease for ten years (wow - hadn't realized it was that long). I was diagnosed when I was 12 years old after experiencing diarhhoea and blood in my stool for about a month. We didn't really pay that much attention to it until I had the most crippling stomach pain, after a couple of days of that we called in the family gp who referred me to a pediatric surgeon, as well as a gastroenterologist who promptly put me in hospital. I was in that hospital under their care for two weeks in which I started losing weight very rapidly and went from 50kg to 42kg. The details are a little blurry but as far as I remember I was put on tablets (pentazza) as well as large amounts of prednisone. I developed the usual chipmunk face from the prednisone as well as scarring on my hips and lower back, which I still have today although they have faded a lot. I also had hair loss, which I am happy to say went away once I went off the prednisone a few months later.
I did not have a great experience with those doctors, although they both have good reputations. To this day I do not really understand what they were thinking as they let me eat whatever I wanted, including pizza one of the worst things a person with active Crohns disease can eat I guess (due to the high fat content). They also misdiagnosed me with Ulcerative Colitis, which made it difficult for me to receive the right treatment and discharged me from hospital two weeks later without having given me a full colonoscopy. 10 years later I have very much come to terms with their mistakes but it did make what was a very difficult time much harder.
After returning home I was still in huge amounts of pain and continued to lose weight, despite my mom's best efforts to get me to eat. After a week of this my mom contacted another gastroenterologist who was recommended to her by a friend whose son has Ulcerative Colitis. When I met with him he took one look at me and told me to go straight to hospital without even going home first, he also told my mom that there was a 60% chance I would need to have a colectomy. I was in the second hospital for three weeks and taken off all food for 10 days and fed intravenously. I also began having infleximab infusions and shortly after I was discharged I had my third, which put me into remission. I was very fortunate that I did not have to have the operation.
I then began the process of building back muscle and putting weight back on (which involved taking lots of shakes and supplements). My family were incredibly supportive during this time and I don't think it is possible to have had a better support system, in those 5 weeks of hospitalization I don't think I spent more than an hour alone and either my mom or granny slept in my room every night. Once I was discharged I got better relatively quickly and stopped the infusions as well as the prednisone. I am still with the same doctor, who is absolutely incredible and has never ceased to provide me with top quality care for the last 9 years.
A few years later when I was about 17 I had a relapse although it was not nearly as bad as the first attack and was put back on the infusions. I am still on them today (I am now 21) and go every 6 weeks. I am mostly okay although I get incredibly tired when I am due for an infusion (wondering if this happens to anyone else?) I also get cramping from time to time. At the moment I am a few days overdue for an infusion because my medicine hadn't been delivered when I was scheduled to go. I am struggling a bit as I am feeling exhausted, which makes it a bit hard to function properly and I have had to go to the toilet a lot more than usual the last few days. This is not usually the case but I am looking very forward to having the infusion next week and feeling better.
As for diet I do eat very healthily and have recently started having a lot more fibre, which has helped a lot as I do get very constipated. I can eat pretty much everything though (in moderation) although for the most part I stay away from creamy and rich foods as well as alcohol as I usually feel sick and crampy after having them.
Looking forward to seeing whose out there on this forum and to hearing your responses
I don't know many people with Crohn's so it will be great to hear everyone's stories.
