Hello, I have been reading many post for quiet some time and decided I would really enjoy being part of the discussion and getting and giving advice. Thanks to many posts that I have been able to read and help me.
I was diagnosed with Crohns Disease in April 2010, I believe that I had symptoms since January 2010 but was just told the usual "IBS" and it would come and go nothing I can do but watch what I eat. So I did that and it would boil down to the point where I would not even eat anything and I would have pain and be in the bathroom. So many trips to the ER because of severe abdominal cramping and throwing up etc. Then one time when I was in the hospital they finally did a CT Scan and colonoscopy and found out that I had Crohns I had the lower part of my small intestine approx 20 cm badly inflammed. I was in the hospital for a couple more days to get my symptoms down and was set up with a GI specialist. Meeting him was very helpful and he was very knowledgable and I started to be on prednisone 40mg a day and tryed many meds from Buscopan, remicade, Immuran, and a couple others.
Over the months I was not getting any relief and had been to the hospital a couple more times. My GI then suggested that I cant taper off my Prednisone and talked about starting the Humaria treatment. After reading up on the Medication and sideaffects I was really sure I did not want to start this drug. Couple days later I was back in the hospital and was then put into contact with a Surgeon. She went over my CT Scan results and said that meds where not going to do to much but try and cover things up, so after much prayer and advice from family and talking through it with my GI doc and Surgeon I said yes to my 1st bowel resection to takeout the damaged part of my small intestine.
I had my surgery January 2011, I was in the hospital for about 10 days things had seemed to be going well the wound was healing, I was trying to adjust to the fact that I had a big opening down my belly haha but that was the least of my worries. I was discharged and doing well besides very sore and limited to range of motion. Eating was going ok. I had been home for 2 days and one evening I was sitting down to watch tv and out of no where intense abdominal pain came upon me to the point where I was crying and crying and it was so bad I threw up and could not move. My family called an Ambulance they brought me in, started me on Morphine and inserted a NG tube because I was throwing up and in soooo much pain. My surgeon was called and they examined me through my ultrasounds to find out I had a small leak in the area of my 1st surgery. Talking to my Surgeon when she got there, she had informed me that my only choice now was to go in and preform a temp ileostomy to help with the surgery and let my bowels heal. I was mortified at 26 years of age this was the last thing I thought I would be going through.
I cried and cried and knew this was out of my hands. I was rushed into emergency surgery for my 2nd procedure. I woke up and was very out of it because of the drugs and realized my life hand changed alot. I was told I would have an ileostomy for approx 3 months. I was in the hospital this time for 2 and half weeks because I ended up in ICU and had a wound infcetion as well a collapsed lower left lung. So I was hooked up to Oxygen, cath, central Iv, epidural, and so much more I just did not want to even move not to mention I had to learn how to deal with this new thing on my body. I was feeling sooo defeated. After I went into ICU because of so many reasons I was doing so much better and was discharged. So being at home was a challenge I was set up with homecare nurses to help me learn about my ileostomy, I was always so scared when it came time to change it because I had such a bad rash around my stoma so to clean that area was soo painful.
The 3 months went by and I started to get better as time went on. I have been off work through this whole process. I also stopped all meds after my 2nd Surgery. So glad to be off prednisone!!!
I had my reversal in May 2011. Things went well, the Surgery was a success in terms that after 9 days in the hospital and coming home I did not end back in haha. The one things I did enjoy when I had my ileostomy was food was easier to handle. Now its July 1st, 2011, I just started back to work on a graduated back to work plan which is going ok. Certain foods are starting to affect me again, little pain comes and goes, I visit the bathroom many times. I am tempted to get a seat warmer for the middle of the nigh visits haha. So I am kinda nervous again as to what will happen from here. I have also noticed I started to lose alot of hair, through this whole process I lost 50 pounds.I also have very sore and painful joints, they are extreamly bad in my hands, elbows, knees, spine, and feet. I am very limited to as what I can eat. So at times I feel like I am stuck between a rock and a hard place. Still very emotional about this whole thing, but trying to adjust to my new life and all that I have to learn.
I see my GI mid July and see where we will go from here.
Current Meds:
Percocet when needed
Tylenol Arthritis 2 tabs 3 times a day and my natarual path meds
I was diagnosed with Crohns Disease in April 2010, I believe that I had symptoms since January 2010 but was just told the usual "IBS" and it would come and go nothing I can do but watch what I eat. So I did that and it would boil down to the point where I would not even eat anything and I would have pain and be in the bathroom. So many trips to the ER because of severe abdominal cramping and throwing up etc. Then one time when I was in the hospital they finally did a CT Scan and colonoscopy and found out that I had Crohns I had the lower part of my small intestine approx 20 cm badly inflammed. I was in the hospital for a couple more days to get my symptoms down and was set up with a GI specialist. Meeting him was very helpful and he was very knowledgable and I started to be on prednisone 40mg a day and tryed many meds from Buscopan, remicade, Immuran, and a couple others.
Over the months I was not getting any relief and had been to the hospital a couple more times. My GI then suggested that I cant taper off my Prednisone and talked about starting the Humaria treatment. After reading up on the Medication and sideaffects I was really sure I did not want to start this drug. Couple days later I was back in the hospital and was then put into contact with a Surgeon. She went over my CT Scan results and said that meds where not going to do to much but try and cover things up, so after much prayer and advice from family and talking through it with my GI doc and Surgeon I said yes to my 1st bowel resection to takeout the damaged part of my small intestine.
I had my surgery January 2011, I was in the hospital for about 10 days things had seemed to be going well the wound was healing, I was trying to adjust to the fact that I had a big opening down my belly haha but that was the least of my worries. I was discharged and doing well besides very sore and limited to range of motion. Eating was going ok. I had been home for 2 days and one evening I was sitting down to watch tv and out of no where intense abdominal pain came upon me to the point where I was crying and crying and it was so bad I threw up and could not move. My family called an Ambulance they brought me in, started me on Morphine and inserted a NG tube because I was throwing up and in soooo much pain. My surgeon was called and they examined me through my ultrasounds to find out I had a small leak in the area of my 1st surgery. Talking to my Surgeon when she got there, she had informed me that my only choice now was to go in and preform a temp ileostomy to help with the surgery and let my bowels heal. I was mortified at 26 years of age this was the last thing I thought I would be going through.
I cried and cried and knew this was out of my hands. I was rushed into emergency surgery for my 2nd procedure. I woke up and was very out of it because of the drugs and realized my life hand changed alot. I was told I would have an ileostomy for approx 3 months. I was in the hospital this time for 2 and half weeks because I ended up in ICU and had a wound infcetion as well a collapsed lower left lung. So I was hooked up to Oxygen, cath, central Iv, epidural, and so much more I just did not want to even move not to mention I had to learn how to deal with this new thing on my body. I was feeling sooo defeated. After I went into ICU because of so many reasons I was doing so much better and was discharged. So being at home was a challenge I was set up with homecare nurses to help me learn about my ileostomy, I was always so scared when it came time to change it because I had such a bad rash around my stoma so to clean that area was soo painful.
The 3 months went by and I started to get better as time went on. I have been off work through this whole process. I also stopped all meds after my 2nd Surgery. So glad to be off prednisone!!!
I had my reversal in May 2011. Things went well, the Surgery was a success in terms that after 9 days in the hospital and coming home I did not end back in haha. The one things I did enjoy when I had my ileostomy was food was easier to handle. Now its July 1st, 2011, I just started back to work on a graduated back to work plan which is going ok. Certain foods are starting to affect me again, little pain comes and goes, I visit the bathroom many times. I am tempted to get a seat warmer for the middle of the nigh visits haha. So I am kinda nervous again as to what will happen from here. I have also noticed I started to lose alot of hair, through this whole process I lost 50 pounds.I also have very sore and painful joints, they are extreamly bad in my hands, elbows, knees, spine, and feet. I am very limited to as what I can eat. So at times I feel like I am stuck between a rock and a hard place. Still very emotional about this whole thing, but trying to adjust to my new life and all that I have to learn.
I see my GI mid July and see where we will go from here.
Current Meds:
Percocet when needed
Tylenol Arthritis 2 tabs 3 times a day and my natarual path meds
