- Joined
- Mar 21, 2014
- Messages
- 8
Hello everyone!
Our journey began one morning when my 16 yr old son Nick woke up for school complaining about pain that was on his right side, right next to his belly button. He said his pain was about a 6 on a scale of 1 to 10. He has a high pain tolerance so I knew my baby was hurting. So dad takes him to his pedi who assesses him and says that it looks like appendicitis except that he would be "in a lot more pain". They do an X-ray that showed lots of air and gas in his tummy. She sends him home with Gas-X and says that if it is indeed appendicitis the next 6 hrs would tell the tale because he would be in a lot more pain. By the way, his CBC was normal and he had no temp.
I get home from work that evening and Nick is curled up in bed shivering saying he was cold and had chills. I took his temp and it was 102.7. He said the pain was pretty much gone it was down to a "3". We took him to the ER where his bloodwork showed that his white count was now 25,000! So the er doc thought that his appendix had probably ruptured. So we did our first (of many many many) CT scans. Results came back that his appendix looked fine but that there was some thickening of his small bowel. So Nicholas was admitted to the hospital for the first time on February 4, 2014.
He had an EGD and Colonoscopy with biopsy done ( first time my kid was ever under general anesthesia and of course I was freaking out), but he did well with the procedure. Results showed that his terminal ileum was very very inflamed and narrowed and that it looked like Crohn's Disease. We were flabbergasted! In total shock, as this was our first time ever hearing anything like this about our healthy (other than having asthma) football playing, 6 ft tall boy! Because his white count was extremely high we also knew that he had infection. We were told that there was also the possibility that infection could mimic Crohn's and could make his intestine look that way. So of course THAT was what we were holding on to and praying that it was. Surely Nick did not contract some life long disease that we knew hardly anything about....
So we get discharged from the hospital after 4 days and Nick was started on 40 mg of Prednisone daily and PO (by mouth) Flagyl and Cipro (he was on IV form of these antibiotics in the hospital), along with starting Protonix. He was also placed on a clear liquid diet only. We were to have an appointment with the Pedi GI specialist on the 20th and would get the final results at that time. So on the 20th of February off we go to our appointment. There the GI doc says that he is officially diagnosing Nick with Crohns Disease. He says that the biopsy did NOT confirm it but the serum IBD Panel that he ordered DID confirm it. So we talk about treatment options and we hear for the first time about 6MP, Enteral Nutriton, Remicade and Methro-something. He said that lots of lab work would need to be done before we could start on these meds but that we would most likely treat "mid tier" with steroids and 6MP or Methro-something instead of "high tier" with Remicade. So we walk over to the adjoining hospital to get the lab work drawn with new prescriptions from the doc in my hand. While Nicholas is sitting in the chair to get stuck he starts leaning over saying that he is tired. I go over to him and he is sweaty and clammy and shivering!! He says he is in no pain but he just "needs to lay down and sleep". WHAT THE WHAT IS GOING ON???? The lab people are thinking that he is about to pass out from the needle. I'm like noooooo, he just got out of the hospital. Needles don't scare him besides all u did was give him a PPD ( TB skin test)! So I take him over to the ER. Guess what?? Nick's white count is 23,000!! How did that happen?? He's been on antibiotics for 2 weeks? So we are admitted to the hospital AGAIN in less than 2 weeks.
We do another CT scan and this time it shows that there is a 7.2 cm mass inside Nicks belly!! They say he has a huge abscess secondary to Crohn's. They said that he was becoming septic!! So once again Nick is made NPO (no food by mouth). He is taken to Radiology to have a drain placed and we are told that immediately after placing the drain 95 mls of green pus comes out. Ewwwww I know. So once again he is on IV antibiotics, Zosyn only this time. Nick does well again during this hospital course. However his GI doc says that Nick's Crohn's is very aggressive, so we will have to be aggressive and we need to do Remicade once the abscess is gone. He orders for Nick to only have Enteral Nutrition shakes until further notice. So after 6 days (a Wednesday) we go home with this huge drain in place. On Friday we go back to the doctors to have a CT scan done to see if the drain can be pulled. CT scan shows that the abscess is gone,and drain can GO!! Yayyy!! Nick is thrilled, still wants to eat but he is ecstatic to not have the drain in. This is now Friday. On Monday night Tuesday morning, 3 days later, Nick wakes me up complaining of severe pain. A 7 this time! My baby was on his knees praying for God to make the pain go away. I was in tears crying because this was too much and was happening sooo dang fast.
So again we go to the hospital, this time with a direct admission (the pediatric surgeons Nurse Practitioner is a friend of mine and I texted her and let her know what was going on). So we are admitted AGAIN, less than a week from our last discharge and for the 3rd time in 4 weeks!! Another CT scan shows that Nick's belly is a complete mess. He has several small abscesses, lots of inflammation and lots of fluid. Peritonitis. Sigh. My poor kid can't seem to catch a break. GI doc says that he will have to be in the hospital for at least 3 weeks for 21 days of IV antibiotics. He has not been to school in February and now it's the first of March and he's saying he will be in the hospital all of March. This is his Junior year and this just sooooo unbelievable.....
We were devastated and in shock at how aggressive his disease seemed to be. He seemed to thrive while on the meds in the hospital. But something seemed to happen when he went home although he was on the same meds. Come to find out that the difference is PO versus IV form. Nicks disease stops his ability to absorb things. He thrived with IV antibiotics but he was not absorbing the pill form so he kept getting abscesses. We found out that his Vitamin D level was 14 and the range is 30 to 100!! We found out that he had lost 11 pounds in the month that all this had been going on. That was really devastating for us because he has such a hard time gaining weight (now we know why). He's nearly 6 ft tall but sooo thin and lanky.
So they place a PICC line in Nicks arm which is a semi permanent central line that can stay in for up to a year. This way they can draw blood and have IV access without having to stick him all the time. They started him on TPN and he could STILL have no food. Only clear liquids and Ensure Plus shakes. Poor kid. He used to eat me out of house and home and now he has had no food in over a month! We stay in the hospital for 2 weeks and they finally let him go home because mom and dad are RN's and can do the TPN and IV antibiotics at home. We do an MRI this time( because dear son has now had 9 or 10 CT scans in a month and we are getting worried about radiation) and MRI shows that despite 2 weeks of IV antibiotics 2 abscesses have gotten smaller, but one has actually gotten bigger!! So the decision was made to get our first infusion of Remicade. Despite the presence of abscesses. The Pedi Surgeons also came to talk to us about what would happen if the abscesses didn't clear within the next 2 weeks. Nick had been on 60 mg of Prednisone as well as one dose of Remicade. Surgeons say they would go in and clean his belly out and would cut out the bad part of his terminal ileum. But because of being on the steroids and Remicade he would more than likely have to have a temporary ostomy
. This was sooo scary to us.
So at home I prayed and nursed my kiddo back to health to the best of my ability. Starting and stopping TPN infusions and IV antibiotics and IV Diflucan. Tending to occluded IV pump alarms that were going off in the middle of the night. But of course, he is worth it. And it was all definitely worth it to go to our follow up appt after being out of the hospital for a week and finding out that Nick had gained back all of the weight he had lost!!! We started this journey at 163 dropped down to 151 and he was back to 162 at this visit. Praise God!!! Also he had not been in ANY pain at all. So the second Remicade infusion was scheduled for the next Friday with another MRI scheduled for that Wednesday. That was this past week. The Friday we were to get Remicade (yesterday) Nick woke up with pain to the touch at his belly button. Sigh. The GI doc didn't want to take any chances because we all KNOW how fast Nick can develop an abscess, so he ordered an Ultrasound to be done before the Remicade infusion. And we found out the results of the MRI that was done on Wed. NOOOOO ABSCESSES WERE SEEN!! And weight is now 165 pounds!!! Thank you God!! The Remicade infusion ended up being put off until Monday because his doc wants to discuss the film with the radiologist first. But GI doc did say that he doesn't see anything on ultrasound, so he is just being cautious.
So this brings us to today Saturday, March 29th. The plan is for the 2nd loading dose of Remicade to be infused Monday. Continue with IV Zosyn and IV Diflucan at home until Friday and then the PICC line is to be pulled the following Monday. Also we are in the process of tapering off the prednisone. Sorry this is so long but I wanted to fill you guys in on our journey. I have been reading this forum since February when we got our diagnosis and I can't tell you how much hope and happiness and information that I have gotten from reading everyone's stories. It feels so awesome to know that we are not alone and to know that others are going through it or have been through it. Thanks for listening!!
Our journey began one morning when my 16 yr old son Nick woke up for school complaining about pain that was on his right side, right next to his belly button. He said his pain was about a 6 on a scale of 1 to 10. He has a high pain tolerance so I knew my baby was hurting. So dad takes him to his pedi who assesses him and says that it looks like appendicitis except that he would be "in a lot more pain". They do an X-ray that showed lots of air and gas in his tummy. She sends him home with Gas-X and says that if it is indeed appendicitis the next 6 hrs would tell the tale because he would be in a lot more pain. By the way, his CBC was normal and he had no temp.
I get home from work that evening and Nick is curled up in bed shivering saying he was cold and had chills. I took his temp and it was 102.7. He said the pain was pretty much gone it was down to a "3". We took him to the ER where his bloodwork showed that his white count was now 25,000! So the er doc thought that his appendix had probably ruptured. So we did our first (of many many many) CT scans. Results came back that his appendix looked fine but that there was some thickening of his small bowel. So Nicholas was admitted to the hospital for the first time on February 4, 2014.
He had an EGD and Colonoscopy with biopsy done ( first time my kid was ever under general anesthesia and of course I was freaking out), but he did well with the procedure. Results showed that his terminal ileum was very very inflamed and narrowed and that it looked like Crohn's Disease. We were flabbergasted! In total shock, as this was our first time ever hearing anything like this about our healthy (other than having asthma) football playing, 6 ft tall boy! Because his white count was extremely high we also knew that he had infection. We were told that there was also the possibility that infection could mimic Crohn's and could make his intestine look that way. So of course THAT was what we were holding on to and praying that it was. Surely Nick did not contract some life long disease that we knew hardly anything about....
So we get discharged from the hospital after 4 days and Nick was started on 40 mg of Prednisone daily and PO (by mouth) Flagyl and Cipro (he was on IV form of these antibiotics in the hospital), along with starting Protonix. He was also placed on a clear liquid diet only. We were to have an appointment with the Pedi GI specialist on the 20th and would get the final results at that time. So on the 20th of February off we go to our appointment. There the GI doc says that he is officially diagnosing Nick with Crohns Disease. He says that the biopsy did NOT confirm it but the serum IBD Panel that he ordered DID confirm it. So we talk about treatment options and we hear for the first time about 6MP, Enteral Nutriton, Remicade and Methro-something. He said that lots of lab work would need to be done before we could start on these meds but that we would most likely treat "mid tier" with steroids and 6MP or Methro-something instead of "high tier" with Remicade. So we walk over to the adjoining hospital to get the lab work drawn with new prescriptions from the doc in my hand. While Nicholas is sitting in the chair to get stuck he starts leaning over saying that he is tired. I go over to him and he is sweaty and clammy and shivering!! He says he is in no pain but he just "needs to lay down and sleep". WHAT THE WHAT IS GOING ON???? The lab people are thinking that he is about to pass out from the needle. I'm like noooooo, he just got out of the hospital. Needles don't scare him besides all u did was give him a PPD ( TB skin test)! So I take him over to the ER. Guess what?? Nick's white count is 23,000!! How did that happen?? He's been on antibiotics for 2 weeks? So we are admitted to the hospital AGAIN in less than 2 weeks.
We do another CT scan and this time it shows that there is a 7.2 cm mass inside Nicks belly!! They say he has a huge abscess secondary to Crohn's. They said that he was becoming septic!! So once again Nick is made NPO (no food by mouth). He is taken to Radiology to have a drain placed and we are told that immediately after placing the drain 95 mls of green pus comes out. Ewwwww I know. So once again he is on IV antibiotics, Zosyn only this time. Nick does well again during this hospital course. However his GI doc says that Nick's Crohn's is very aggressive, so we will have to be aggressive and we need to do Remicade once the abscess is gone. He orders for Nick to only have Enteral Nutrition shakes until further notice. So after 6 days (a Wednesday) we go home with this huge drain in place. On Friday we go back to the doctors to have a CT scan done to see if the drain can be pulled. CT scan shows that the abscess is gone,and drain can GO!! Yayyy!! Nick is thrilled, still wants to eat but he is ecstatic to not have the drain in. This is now Friday. On Monday night Tuesday morning, 3 days later, Nick wakes me up complaining of severe pain. A 7 this time! My baby was on his knees praying for God to make the pain go away. I was in tears crying because this was too much and was happening sooo dang fast.
So again we go to the hospital, this time with a direct admission (the pediatric surgeons Nurse Practitioner is a friend of mine and I texted her and let her know what was going on). So we are admitted AGAIN, less than a week from our last discharge and for the 3rd time in 4 weeks!! Another CT scan shows that Nick's belly is a complete mess. He has several small abscesses, lots of inflammation and lots of fluid. Peritonitis. Sigh. My poor kid can't seem to catch a break. GI doc says that he will have to be in the hospital for at least 3 weeks for 21 days of IV antibiotics. He has not been to school in February and now it's the first of March and he's saying he will be in the hospital all of March. This is his Junior year and this just sooooo unbelievable.....
We were devastated and in shock at how aggressive his disease seemed to be. He seemed to thrive while on the meds in the hospital. But something seemed to happen when he went home although he was on the same meds. Come to find out that the difference is PO versus IV form. Nicks disease stops his ability to absorb things. He thrived with IV antibiotics but he was not absorbing the pill form so he kept getting abscesses. We found out that his Vitamin D level was 14 and the range is 30 to 100!! We found out that he had lost 11 pounds in the month that all this had been going on. That was really devastating for us because he has such a hard time gaining weight (now we know why). He's nearly 6 ft tall but sooo thin and lanky.
So they place a PICC line in Nicks arm which is a semi permanent central line that can stay in for up to a year. This way they can draw blood and have IV access without having to stick him all the time. They started him on TPN and he could STILL have no food. Only clear liquids and Ensure Plus shakes. Poor kid. He used to eat me out of house and home and now he has had no food in over a month! We stay in the hospital for 2 weeks and they finally let him go home because mom and dad are RN's and can do the TPN and IV antibiotics at home. We do an MRI this time( because dear son has now had 9 or 10 CT scans in a month and we are getting worried about radiation) and MRI shows that despite 2 weeks of IV antibiotics 2 abscesses have gotten smaller, but one has actually gotten bigger!! So the decision was made to get our first infusion of Remicade. Despite the presence of abscesses. The Pedi Surgeons also came to talk to us about what would happen if the abscesses didn't clear within the next 2 weeks. Nick had been on 60 mg of Prednisone as well as one dose of Remicade. Surgeons say they would go in and clean his belly out and would cut out the bad part of his terminal ileum. But because of being on the steroids and Remicade he would more than likely have to have a temporary ostomy
. This was sooo scary to us. So at home I prayed and nursed my kiddo back to health to the best of my ability. Starting and stopping TPN infusions and IV antibiotics and IV Diflucan. Tending to occluded IV pump alarms that were going off in the middle of the night. But of course, he is worth it. And it was all definitely worth it to go to our follow up appt after being out of the hospital for a week and finding out that Nick had gained back all of the weight he had lost!!! We started this journey at 163 dropped down to 151 and he was back to 162 at this visit. Praise God!!! Also he had not been in ANY pain at all. So the second Remicade infusion was scheduled for the next Friday with another MRI scheduled for that Wednesday. That was this past week. The Friday we were to get Remicade (yesterday) Nick woke up with pain to the touch at his belly button. Sigh. The GI doc didn't want to take any chances because we all KNOW how fast Nick can develop an abscess, so he ordered an Ultrasound to be done before the Remicade infusion. And we found out the results of the MRI that was done on Wed. NOOOOO ABSCESSES WERE SEEN!! And weight is now 165 pounds!!! Thank you God!! The Remicade infusion ended up being put off until Monday because his doc wants to discuss the film with the radiologist first. But GI doc did say that he doesn't see anything on ultrasound, so he is just being cautious.
So this brings us to today Saturday, March 29th. The plan is for the 2nd loading dose of Remicade to be infused Monday. Continue with IV Zosyn and IV Diflucan at home until Friday and then the PICC line is to be pulled the following Monday. Also we are in the process of tapering off the prednisone. Sorry this is so long but I wanted to fill you guys in on our journey. I have been reading this forum since February when we got our diagnosis and I can't tell you how much hope and happiness and information that I have gotten from reading everyone's stories. It feels so awesome to know that we are not alone and to know that others are going through it or have been through it. Thanks for listening!!
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