- Joined
- Oct 25, 2009
- Messages
- 33
Hi everyone, I was diagnosed with Crohn's in 2002 I think I had just turned 18 and was having mild pain in my right side for what seems months.
I went to my Pediatrician and they diagnosed me as being lactose intolerant.
A little time went by and the symptoms got worse, so I went back to the doctor, at this point I guess they felt something out of place when they examined my abdominal on the right side and sent me for a CT Scan... I HATE THE BARIUM.
The CT Scan revealed something but they weren't really sure they thought I had some kind of abscess and that lead the docs to trying to drain something out my side needless to say they got nothing out of it and sat there shanking me for about 30 minutes for no reason. : (
So I was admitted to the hospital the pedi floor ... so nice, I know now compared to the regular floors in the hosp.
Apparently my intestine was really inflamed and had basically destroyed my appendix, which wasn't discovered until I had the surgery to remove 8in of my intestine, I believe it was my small intestine but I was recently told it was mostly of my large intestine and a lil of my small... I'm honestly still confused, I just know they went in and took some.
So after that was all said in done, I healed up and followed up with my GI, he had started me on Asacol which worked for a little bit but then stopped. I can't recall how long it actually worked for, but then there was talk of using 6MP which at that time scared the heck out of my mother (unfortunately I lost her in 2004) so I went on the Internet and google'd around and found this stuff called Molocure (now Digestinol) that was made from aloe and was supposed to help, I started taking it sometime in I think 2002 or 2003 and I noticed improvement right away.
I continued on this path for about seven years feeling great and not taking any meds, not even seeing my GI, I look back now and that was probably a stupid decision on my part to not even visit once in awhile.
Then Easter day of 2009 I woke up feeling terrible (my miracle supplement Digestinol stopped working), I went to the ER they took some blood and said the blood counts looked fine gave me a script for Pentasa sent me home and I followed up with my GI.
He started me on Asacol which didn't keep my Crohn's completely under control but helped. I still occasionally had bloating and gas pains, etc. But just dealt with the 1 -3 days of pain and then I would go a week or two with no issues.
I had a CT Scan which showed thickening where the two pieces of intestine were rejoined together from the surgery and a colonoscopy confirmed the recurrence at the site of the resection ... yippy great :::sarcasim::
So I stick with the Asacol of course not working 100% so eventually I bit the bullet and tried the 6MP.
The 6MP made me feel very weak and I always had a head ache and made me fell all out worse then what I felt like, I tried it for 2wks and the side effects didn't improve so we stopped the 6MP and continued with the Asacol.
Now September of 2009 rolls around and I start having strange sensations in my penis ... go figure .. what is going on now?! So I go to the ER and they of course think I have some kind of STD but I test negative. Time passes and then I start getting pain in my testicle by this time I'm like something deff isn't right .. I knew there were problems with the strange sensation in my penis, but the Doc's wrote is off as I'm crazy and they were just confused, I even went to another walk in clinic for a second opinion, and they sent me to a Urologist, they gave me cipro to take and said I should be fine in a few weeks, three days later I was sitting at work and the pain spiked throughout my groin and into my lower abdominal area right below my waist... never felt anything like it and the pain made me sweat.
This was on a Saturday and the pain would come n go, I finished out the day at work and woke up Sunday with more, pain.
I went to the ER that morning and told them everything and they just figured it had to be something with the Crohn's so they gave me a CT Scan .. mmm Barium love it! They found an obstruction and admitted me to the hospital on 10/4 (few weeks ago). This is where I figured out how much I appreciated the Pedi floor, the nurses were so much nicer, you appreciate a friendly person so much when you feel like crap and you’re in some of the worse pain you've ever had.
At first they tried to bring everything under control with no food and steroids and antibiotics but it wasn't working, they also put a stupid NG tube in my nose and down my throat to suck the stuff out of my stomach, which they left in for days. From what I'm told they only do this when people throw up which I wasn't .. I guess they just wanted to be cautious, I don't know if it helped me or not but it was the most uncomfortable thing ever.
So the meds didn't work and I went in for surgery on 10/9 the surgeon basically told me everything was a mess and that my intestine was leaking which was I guess affecting the nerves in my groin area and that was causing all the pain.
He had to remove 14 inches of my small intestine.
I was discharged on 10/18 and I've been sitting home recovering, my belly is still sore from the surgery and my back is sore from not I guess walking straight up or walking minimal, or something.
My bowl movements still haven't formed up which is a little worrying to me, I still don't feel 100 percent and I hope I get better soon and don't continue to feel crummy like I do. I also wish my appetite would improve as it's not that great.
I have a follow up scheduled with my Surgeon for Friday, I hope he finds that I am on the right track to improved health and I also have a follow up with my GI the first week in November.
In the hospital he discussed starting me on Remicade which kinda scares me but I really want to get better and stay better for as long as I can, having surgery sucks so bad and I'm not a fan.
Has anyone on here taken Remicade? Did it work? Did it not work? What problems have you had, etc. I guess I'm looking for success stories and the horror stories. I really want to get better but I also don't want to make myself feel worse or mess myself up in some other way because of this ridiculous disease.
*** I found the Remicade Club Thread, I'll read it ***
Thanks to everyone who read this whole thing... It's quite long.
Jordan : )
I went to my Pediatrician and they diagnosed me as being lactose intolerant.
A little time went by and the symptoms got worse, so I went back to the doctor, at this point I guess they felt something out of place when they examined my abdominal on the right side and sent me for a CT Scan... I HATE THE BARIUM.
The CT Scan revealed something but they weren't really sure they thought I had some kind of abscess and that lead the docs to trying to drain something out my side needless to say they got nothing out of it and sat there shanking me for about 30 minutes for no reason. : (
So I was admitted to the hospital the pedi floor ... so nice, I know now compared to the regular floors in the hosp.
Apparently my intestine was really inflamed and had basically destroyed my appendix, which wasn't discovered until I had the surgery to remove 8in of my intestine, I believe it was my small intestine but I was recently told it was mostly of my large intestine and a lil of my small... I'm honestly still confused, I just know they went in and took some.
So after that was all said in done, I healed up and followed up with my GI, he had started me on Asacol which worked for a little bit but then stopped. I can't recall how long it actually worked for, but then there was talk of using 6MP which at that time scared the heck out of my mother (unfortunately I lost her in 2004) so I went on the Internet and google'd around and found this stuff called Molocure (now Digestinol) that was made from aloe and was supposed to help, I started taking it sometime in I think 2002 or 2003 and I noticed improvement right away.
I continued on this path for about seven years feeling great and not taking any meds, not even seeing my GI, I look back now and that was probably a stupid decision on my part to not even visit once in awhile.
Then Easter day of 2009 I woke up feeling terrible (my miracle supplement Digestinol stopped working), I went to the ER they took some blood and said the blood counts looked fine gave me a script for Pentasa sent me home and I followed up with my GI.
He started me on Asacol which didn't keep my Crohn's completely under control but helped. I still occasionally had bloating and gas pains, etc. But just dealt with the 1 -3 days of pain and then I would go a week or two with no issues.
I had a CT Scan which showed thickening where the two pieces of intestine were rejoined together from the surgery and a colonoscopy confirmed the recurrence at the site of the resection ... yippy great :::sarcasim::
So I stick with the Asacol of course not working 100% so eventually I bit the bullet and tried the 6MP.
The 6MP made me feel very weak and I always had a head ache and made me fell all out worse then what I felt like, I tried it for 2wks and the side effects didn't improve so we stopped the 6MP and continued with the Asacol.
Now September of 2009 rolls around and I start having strange sensations in my penis ... go figure .. what is going on now?! So I go to the ER and they of course think I have some kind of STD but I test negative. Time passes and then I start getting pain in my testicle by this time I'm like something deff isn't right .. I knew there were problems with the strange sensation in my penis, but the Doc's wrote is off as I'm crazy and they were just confused, I even went to another walk in clinic for a second opinion, and they sent me to a Urologist, they gave me cipro to take and said I should be fine in a few weeks, three days later I was sitting at work and the pain spiked throughout my groin and into my lower abdominal area right below my waist... never felt anything like it and the pain made me sweat.
This was on a Saturday and the pain would come n go, I finished out the day at work and woke up Sunday with more, pain.
I went to the ER that morning and told them everything and they just figured it had to be something with the Crohn's so they gave me a CT Scan .. mmm Barium love it! They found an obstruction and admitted me to the hospital on 10/4 (few weeks ago). This is where I figured out how much I appreciated the Pedi floor, the nurses were so much nicer, you appreciate a friendly person so much when you feel like crap and you’re in some of the worse pain you've ever had.
At first they tried to bring everything under control with no food and steroids and antibiotics but it wasn't working, they also put a stupid NG tube in my nose and down my throat to suck the stuff out of my stomach, which they left in for days. From what I'm told they only do this when people throw up which I wasn't .. I guess they just wanted to be cautious, I don't know if it helped me or not but it was the most uncomfortable thing ever.
So the meds didn't work and I went in for surgery on 10/9 the surgeon basically told me everything was a mess and that my intestine was leaking which was I guess affecting the nerves in my groin area and that was causing all the pain.
He had to remove 14 inches of my small intestine.
I was discharged on 10/18 and I've been sitting home recovering, my belly is still sore from the surgery and my back is sore from not I guess walking straight up or walking minimal, or something.
My bowl movements still haven't formed up which is a little worrying to me, I still don't feel 100 percent and I hope I get better soon and don't continue to feel crummy like I do. I also wish my appetite would improve as it's not that great.
I have a follow up scheduled with my Surgeon for Friday, I hope he finds that I am on the right track to improved health and I also have a follow up with my GI the first week in November.
In the hospital he discussed starting me on Remicade which kinda scares me but I really want to get better and stay better for as long as I can, having surgery sucks so bad and I'm not a fan.
Has anyone on here taken Remicade? Did it work? Did it not work? What problems have you had, etc. I guess I'm looking for success stories and the horror stories. I really want to get better but I also don't want to make myself feel worse or mess myself up in some other way because of this ridiculous disease.
*** I found the Remicade Club Thread, I'll read it ***
Thanks to everyone who read this whole thing... It's quite long.
Jordan : )
