Hi everyone. My name is Josh, I'm 20 years old and I'm currently working towards my associates in computer science (kinda).
WARNING! long story ahead...lol
I started having problems May '11. I had severe abdominal pain, fever and a declining appetite. I saw Doc. A and he suspected a simple viral infection. He told me go home and sleep it off. A week later, I saw Doc. B since I hadn't improved. He suspected appendicitis, but ruled it out since I was actually feeling a little better that day.
Well, another week passed, and I showed no improvements. Then one night, I went to find something to eat, and I passed out from dehydration. I went to the E.R. and they performed a CT scan and told me I had a urachal cyst, and it needed to be removed. So, on June 6th, it was removed via surgery.
Everything was going fine for about a week. I had a follow up with Doc. C (the urologist who performed the surgery). The skin around the staples was red and inflamed and the wound was secreting this strange mucus, which he identified as fibrin. He decided to remove the staples and let the wound heal from the inside out, lol, which means I walked around with a gaping hole in my abdomen which has healed except for one small spot, which I'll get to in a moment.
About a month later, my wound started secreting this chunky brown stuff that had a horrible smell. I made an appointment with Doc. C the following week (he was out of town 'till then) but I felt like I shouldn't wait that long, so I got an appointment to see Doc. B the same day. I caught him up on everything and he told me to keep my appointment w/ Doc. C and he also prescribed some antibiotics. I started taking them, and I did notice an improvement. I saw Doc. C the following week as planned and he agreed with Doc. B. I finished the antibiotics and everything was good for another few weeks. I started the semester late august. Life was much better.
Then on the morning of September 11, I woke up and went to urinate, and out popped a rather large kernel of corn. Needless to say, I freaked out (fellow males can completely sympathize). I went to the E.R. once again and Doc. C came in to see me. After hearing what happened earlier, he immediately suspected crohn's and explained that I had 2 fistulas. One connecting my colon to my scar tissue, and one connecting my intestines and bladder. He handed my care over to Doc. D who is a general surgeon.
So, I started on TPN. I was on it for 3 weeks. The theory was that if there was nothing passing through the fistulas, they would close up. I went 3 weeks with no food or drink whatsoever. :eek2: Also, I withdrew from school, because I didn't know how extensive the home care would be. I did show improvement, and once I got off, I was able to start a liquid diet. A few weeks later I started on a solid diet. That's when the problems started again. I started oozing more stuff from my wound, which meant the fistula had opened back up. To this day, it's still oozing.
On Novemeber 15th, I had a colonoscopy performed by Doc. E who is a GI. I'm going to see him tomorrow to go over the results from the biopsies and make my diagnosis official. Doc. D explained his suggestion for moving forward which is to start on remicade, take it for a month or so, and then do surgery to remove the fistulas as well as part of my TI (terminal ileum, i believe). He said that hopefully, he'll be able to do it lyposcopically. The way it's looking, I might not be able to attend school in the spring, which would make a year outta school. After my last surgery, it took awhile before I could get around on my own. Almost 3 months. Hopefully, it won't take that long this time, since he might not have to cut me open. idk.
Well, that's it for the story. Now onto my questions.
1) Is remicade the best option to start with. I thought it was like a last resort in terms of medication. Although, it might be a good idea to start with the big guns. Thoughts?
2) Is addiction to painkillers that big of a concern? After my surgery, I took hydrocodone 5/50 for 2 months, and I was fine. I had no problems other that constipation. I had no mental or physical signs of withdrawal once I quit either. For the last 2 weeks, my pain has been steadily increasing. I have a fairly high pain threshold, but I was in tears last night. Yet, Doc. D refuses to give me anything. OC stuff just doesn't cut it. Also, I've adapted my diet to compensate for crohn's, but it hasn't helped.
3) Lastly, is it true that we don't know the exact cause of crohn's. I used to drink 2 energy drinks a day for like 3 years. I also took accutane late '09 and I've read plenty of stuff online about patients who took accutane that ended up with IBD a year or two later.
EDIT: My grandfather had mega toxic colon. That's it as far as family history is concerned.
Ummm... I think that's it. :ylol:
If you have any questions or advice, I'd be ecstatic to hear. I look forward to learning everything I can about my condition, and possible helping others once I have a better understanding of it all.
Cheers!
WARNING! long story ahead...lol
I started having problems May '11. I had severe abdominal pain, fever and a declining appetite. I saw Doc. A and he suspected a simple viral infection. He told me go home and sleep it off. A week later, I saw Doc. B since I hadn't improved. He suspected appendicitis, but ruled it out since I was actually feeling a little better that day.
Well, another week passed, and I showed no improvements. Then one night, I went to find something to eat, and I passed out from dehydration. I went to the E.R. and they performed a CT scan and told me I had a urachal cyst, and it needed to be removed. So, on June 6th, it was removed via surgery.
Everything was going fine for about a week. I had a follow up with Doc. C (the urologist who performed the surgery). The skin around the staples was red and inflamed and the wound was secreting this strange mucus, which he identified as fibrin. He decided to remove the staples and let the wound heal from the inside out, lol, which means I walked around with a gaping hole in my abdomen which has healed except for one small spot, which I'll get to in a moment.
About a month later, my wound started secreting this chunky brown stuff that had a horrible smell. I made an appointment with Doc. C the following week (he was out of town 'till then) but I felt like I shouldn't wait that long, so I got an appointment to see Doc. B the same day. I caught him up on everything and he told me to keep my appointment w/ Doc. C and he also prescribed some antibiotics. I started taking them, and I did notice an improvement. I saw Doc. C the following week as planned and he agreed with Doc. B. I finished the antibiotics and everything was good for another few weeks. I started the semester late august. Life was much better.
Then on the morning of September 11, I woke up and went to urinate, and out popped a rather large kernel of corn. Needless to say, I freaked out (fellow males can completely sympathize). I went to the E.R. once again and Doc. C came in to see me. After hearing what happened earlier, he immediately suspected crohn's and explained that I had 2 fistulas. One connecting my colon to my scar tissue, and one connecting my intestines and bladder. He handed my care over to Doc. D who is a general surgeon.
So, I started on TPN. I was on it for 3 weeks. The theory was that if there was nothing passing through the fistulas, they would close up. I went 3 weeks with no food or drink whatsoever. :eek2: Also, I withdrew from school, because I didn't know how extensive the home care would be. I did show improvement, and once I got off, I was able to start a liquid diet. A few weeks later I started on a solid diet. That's when the problems started again. I started oozing more stuff from my wound, which meant the fistula had opened back up. To this day, it's still oozing.
On Novemeber 15th, I had a colonoscopy performed by Doc. E who is a GI. I'm going to see him tomorrow to go over the results from the biopsies and make my diagnosis official. Doc. D explained his suggestion for moving forward which is to start on remicade, take it for a month or so, and then do surgery to remove the fistulas as well as part of my TI (terminal ileum, i believe). He said that hopefully, he'll be able to do it lyposcopically. The way it's looking, I might not be able to attend school in the spring, which would make a year outta school. After my last surgery, it took awhile before I could get around on my own. Almost 3 months. Hopefully, it won't take that long this time, since he might not have to cut me open. idk.
Well, that's it for the story. Now onto my questions.
1) Is remicade the best option to start with. I thought it was like a last resort in terms of medication. Although, it might be a good idea to start with the big guns. Thoughts?
2) Is addiction to painkillers that big of a concern? After my surgery, I took hydrocodone 5/50 for 2 months, and I was fine. I had no problems other that constipation. I had no mental or physical signs of withdrawal once I quit either. For the last 2 weeks, my pain has been steadily increasing. I have a fairly high pain threshold, but I was in tears last night. Yet, Doc. D refuses to give me anything. OC stuff just doesn't cut it. Also, I've adapted my diet to compensate for crohn's, but it hasn't helped.
3) Lastly, is it true that we don't know the exact cause of crohn's. I used to drink 2 energy drinks a day for like 3 years. I also took accutane late '09 and I've read plenty of stuff online about patients who took accutane that ended up with IBD a year or two later.
EDIT: My grandfather had mega toxic colon. That's it as far as family history is concerned.
Ummm... I think that's it. :ylol:
If you have any questions or advice, I'd be ecstatic to hear. I look forward to learning everything I can about my condition, and possible helping others once I have a better understanding of it all.
Cheers!
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... but this forum is here so we can all help each other!
