Hello all. This is on mobile so sorry for any mistakes. I've been struggling with Crohn's since I was 13 and now I'm 18. This is the third time things have been going downhill. Since this is supposed supposed be "my story", I'll try to cover everything that's been going on. I'll make a summary at the bottom for people who don't have the time to read this wall of text.
So, I began having issues with my stomach during 8th grade. I was somewhat popular during these times as I was nice to everyone, pretty active, got good grades, and am considered smart but with my occurring issues, I missed a significant amount of school. I was not diagnosed with Crohn's until a much later date. They didn't do very extensive testing and told me it was a case of IBS and could be handled without medication.
During 9th grade, my issues worsened. I attended about 40% of the time and started having pains almost daily. Things were rough but I was keeping up with my classes. It wasn't until 10th when things got out of control. I'd have blood in my stool and severe pains daily. I went to school for the first few weeks but had to ultimately leave and find an alternative.
I couldn't get to see a GI for many months because I needed to see a pediatric one and there's only one that works in my area. My first appointment was in October of 2012 but was mostly a consultation and I was prescribed Pentasa. In January 2013, I went in for a colonoscopy+endoscopy and they were very surprised by what they found. I had 3 ulcers in my upper intestine and very close to my colon. They fit me in for a remicade treatment shortly after.
The remicade made me feel better or maybe it was just the sense of positivity since something was being done about it. Later that year, around October, I had a perforation. It was a pretty harsh experience overall. I ended up being rushed to the ICU as they put me on TPN and had to calm my intestines down. There were a few other complications like a pic line puncturing my lung since they tried to put it in my neck so that wasn't fun. After being in the ICU for about 2 weeks, I was moved to a normal room down the hall. I stayed there and got many tests done. They took a CT Scan a week or so after and found I had more than what was previously seen. I had a fistula near everything else. They were surprised that I was able to sit up and watch tv or play video games with minimal pain but it was definitely there.
They pushed the surgery to a couple days after that. They removed 18 inches of my upper intestine and a small piece of my colon. I was given an ostomy bag and to make things worse, it was the wrong type. I struggled to use this colostomy bag whilst having an ileostomy (one's upper and the other is lower so one is made for liquids while the other is better with solids). I had chemical burns near my ostomy site and honestly couldn't deal with that for much longer. My mom called and let them know I was having severe pain and it leaked often so I went in and they gave me a prescription for the ileostomy bags.
This is probably extremely boring unless you've been in this situation and can relate but even then, English writing was never my strong suit so I apologize. Thank you for making it this far.
After a couple of months, things were getting better. It's 2014 now and other problems are occurring within my family and my mom ends up having to move from where we were staying (this is a whole other story but she's been taking care of us for the past 8 years with the help of our family and she has her own set of problems that I'll probably end up getting into later since it relates to everything happening currently). It's been hard for me the past few years. I've felt extremely useless and now I was pretty much facing everything alone. I never told anybody about my suicidal thoughts until around this time. I still had frequent blood tests and check-ups and things were only getting worse again. After I was told that Crohn's didn't have a cure, it really hurt my whole mentality. I used to be a good student who had a chance to do great things. Now, I was terrified that everything negative that has happened was going to repeat itself and it did in a way. I have pretty bad anemia with all of this so I lack energy, have stomach pains, and am depressed a lot of the time. Back to what I was talking about earlier, I cried when I heard the bad news and that's something I was told not to do while growing up. I didn't want to be stuck in a loop that ultimately leads to surgery and a temporary point where things are only okay at best. This caused so many doubts in my mind like never being successful and not being wanted in the world.
Luckily, a good friend of mine did help with this. We never told each other that we liked the other but it definitely turned things around a bit. She really helped me get things back on track mentally even though I was getting worse again physically while on the highest dose of remicade.
So, I survived that devastating moment in my life. It may not have had any effect on anyone else but it helped me continue after feeling awful for so long. I had a second surgery in November of 2014 which was about 4 months after hearing about things getting worse. They removed my ostomy and found a small abscess. Everything went well for the most part. I had a few more abscesses show up after the surgery but medicine helped. Flagyl, specifically. So, after that was done, I still had pains and still do with my intestines reconnected.
I'll talk about what's going on now. It's the summer of 2015. I had C-dif in April and it came back or didn't go away. I could've had it for a while before since the usual cause is taking antibiotics often. I didn't mention this but after my second surgery, I had a yeast infection on my tongue so there were some significant things happening because of the amount of antibiotics used. So I'm drinking 5ml of Vancomycin 4 times a day and hopefully it goes away. They can't start me on Humira until this infection is gone so this is probably my most important thing to get under control. I have a few family members who are supportive of my condition and a few who aren't and it makes things a bit harder to handle.
I'm currently staying with my aunt since quite a bit has happened between my mom and the rest of my family. I'll just leave it at we were evicted from our apartment, my girlfriend left me, and now I'm struggling to situate myself mentally while dealing with my occurring physical issues as well. I probably left a few things out so sorry but pm me if you have any questions. Any nice words or helpful stories are much appreciated. Thank you for reading
Summary: Have had Crohn's for 5 years. Things got bad before it was diagnosed and I had a perforation and a long hospital stay. Ostomy bag after first surgery and recently had another that took down the site. Going through a lot of issues with family, friends, and self. Stomach isn't feeling well as I have C-dif and can't get other treatment until it has gone away.
So, I began having issues with my stomach during 8th grade. I was somewhat popular during these times as I was nice to everyone, pretty active, got good grades, and am considered smart but with my occurring issues, I missed a significant amount of school. I was not diagnosed with Crohn's until a much later date. They didn't do very extensive testing and told me it was a case of IBS and could be handled without medication.
During 9th grade, my issues worsened. I attended about 40% of the time and started having pains almost daily. Things were rough but I was keeping up with my classes. It wasn't until 10th when things got out of control. I'd have blood in my stool and severe pains daily. I went to school for the first few weeks but had to ultimately leave and find an alternative.
I couldn't get to see a GI for many months because I needed to see a pediatric one and there's only one that works in my area. My first appointment was in October of 2012 but was mostly a consultation and I was prescribed Pentasa. In January 2013, I went in for a colonoscopy+endoscopy and they were very surprised by what they found. I had 3 ulcers in my upper intestine and very close to my colon. They fit me in for a remicade treatment shortly after.
The remicade made me feel better or maybe it was just the sense of positivity since something was being done about it. Later that year, around October, I had a perforation. It was a pretty harsh experience overall. I ended up being rushed to the ICU as they put me on TPN and had to calm my intestines down. There were a few other complications like a pic line puncturing my lung since they tried to put it in my neck so that wasn't fun. After being in the ICU for about 2 weeks, I was moved to a normal room down the hall. I stayed there and got many tests done. They took a CT Scan a week or so after and found I had more than what was previously seen. I had a fistula near everything else. They were surprised that I was able to sit up and watch tv or play video games with minimal pain but it was definitely there.
They pushed the surgery to a couple days after that. They removed 18 inches of my upper intestine and a small piece of my colon. I was given an ostomy bag and to make things worse, it was the wrong type. I struggled to use this colostomy bag whilst having an ileostomy (one's upper and the other is lower so one is made for liquids while the other is better with solids). I had chemical burns near my ostomy site and honestly couldn't deal with that for much longer. My mom called and let them know I was having severe pain and it leaked often so I went in and they gave me a prescription for the ileostomy bags.
This is probably extremely boring unless you've been in this situation and can relate but even then, English writing was never my strong suit so I apologize. Thank you for making it this far.
After a couple of months, things were getting better. It's 2014 now and other problems are occurring within my family and my mom ends up having to move from where we were staying (this is a whole other story but she's been taking care of us for the past 8 years with the help of our family and she has her own set of problems that I'll probably end up getting into later since it relates to everything happening currently). It's been hard for me the past few years. I've felt extremely useless and now I was pretty much facing everything alone. I never told anybody about my suicidal thoughts until around this time. I still had frequent blood tests and check-ups and things were only getting worse again. After I was told that Crohn's didn't have a cure, it really hurt my whole mentality. I used to be a good student who had a chance to do great things. Now, I was terrified that everything negative that has happened was going to repeat itself and it did in a way. I have pretty bad anemia with all of this so I lack energy, have stomach pains, and am depressed a lot of the time. Back to what I was talking about earlier, I cried when I heard the bad news and that's something I was told not to do while growing up. I didn't want to be stuck in a loop that ultimately leads to surgery and a temporary point where things are only okay at best. This caused so many doubts in my mind like never being successful and not being wanted in the world.
Luckily, a good friend of mine did help with this. We never told each other that we liked the other but it definitely turned things around a bit. She really helped me get things back on track mentally even though I was getting worse again physically while on the highest dose of remicade.
So, I survived that devastating moment in my life. It may not have had any effect on anyone else but it helped me continue after feeling awful for so long. I had a second surgery in November of 2014 which was about 4 months after hearing about things getting worse. They removed my ostomy and found a small abscess. Everything went well for the most part. I had a few more abscesses show up after the surgery but medicine helped. Flagyl, specifically. So, after that was done, I still had pains and still do with my intestines reconnected.
I'll talk about what's going on now. It's the summer of 2015. I had C-dif in April and it came back or didn't go away. I could've had it for a while before since the usual cause is taking antibiotics often. I didn't mention this but after my second surgery, I had a yeast infection on my tongue so there were some significant things happening because of the amount of antibiotics used. So I'm drinking 5ml of Vancomycin 4 times a day and hopefully it goes away. They can't start me on Humira until this infection is gone so this is probably my most important thing to get under control. I have a few family members who are supportive of my condition and a few who aren't and it makes things a bit harder to handle.
I'm currently staying with my aunt since quite a bit has happened between my mom and the rest of my family. I'll just leave it at we were evicted from our apartment, my girlfriend left me, and now I'm struggling to situate myself mentally while dealing with my occurring physical issues as well. I probably left a few things out so sorry but pm me if you have any questions. Any nice words or helpful stories are much appreciated. Thank you for reading
Summary: Have had Crohn's for 5 years. Things got bad before it was diagnosed and I had a perforation and a long hospital stay. Ostomy bag after first surgery and recently had another that took down the site. Going through a lot of issues with family, friends, and self. Stomach isn't feeling well as I have C-dif and can't get other treatment until it has gone away.
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My heart goes out to you.