- Joined
- Dec 13, 2013
- Messages
- 4
Hello all.
I have spent many sleepless nights lately reading this forum and telling my son (Josh) about it from time to time when he has the strength.
Our story began almost 3 months ago. Because he is living away from home my husband and I weren't aware of how sick he was getting. Our son is 18, turning 19 on Christmas day also has anxiety which has made this harder. Around 6 weeks ago he attended the ER via ambulance. After doing virtually nothing he was sent home...the doctor telling him he was going through drug withdrawal (he has been honest to the doctor and us about his use of pot). He then had to find his own way home at 11:30pm living 45minutes from the hospital and still very unwell.
During the next 4 weeks his health deteriorated substantially. He was barely able to eat, had non stop diarrhoea and lost 20kgs in only a couple of weeks. Eventually a relative virtually dragged him to the doctor (his anxiety and humiliation from the hospital had prevented him from going sooner). Blood tests were ordered. As soon as they came back a few days later he was ordered to go to the ER first thing in the morning, that they will be expecting him. I had argued with him all afternoon about coming down to him. He didn't want me to come down and be worried. Eventually the adult relative realised what was going on and told me about it. She assumed I knew he was very sick. I immediately drove down to be with him.
We attended the ER the following morning. Josh could barely get out of the car, he was so weak. The doctors and nurses didn't hesitate to begin testing and begin administering IV fluids. By nightfall this day (Wednesday) he had begun to deteriorate further and required 4 blood transfusions. A colonoscopy and gastroscopy was scheduled for the following day (Thursday). The doctors were already confident that he had Crohns disease or Ulcerative Colitis. Several medications had been started mostly intravenously at this stage. They did have to be increased because of the pain. The tests came back confirming Crohns Disease.
After 6 days in hospital he was released and came home with us (around 2 1/2 hours from where he lives).
Within a few days of our son being home, smiling and eating well he began to slip backwards again. He became very lethargic, pale, the diarrhoea began to get worse again, he was eating lesd, his pain increased and he began to bleed again. At 6am on Monday (16th Dec ) we attended the ER where a myriad of tests were taken, fluids administered and he was admitted to hospital. He was given many IV medications as well as what he already was on. A local Gastroenterologist (who was not even on call) had heard our son, Josh, was admitted and said he would be there at 5:30pm to do another colonoscopy to see what was going on.
The news was not good. Josh has Crohns Disease through virtually all of his large bowel and at least 5cm of the small intestine. There are many large ulcers, some of which had almost perforated the outer bowel lining. There were many ulcers throughout the bowel at various stages of healing, some of which had recently stopped bleeding.
The doctor is doubtful that Josh will have many stages of remission and if he does it is likely it won't last long. Discussion about removing the bowel has already started but for now other medications will be tried.
We are hoping with all our might that the crohns settles enough for him to have some sort of normality in his life even if only to put some weight on and regain strength.
That's our story so far. I'm about to shower and go in to him. It's around 7:30am here in Australia.
I have spent many sleepless nights lately reading this forum and telling my son (Josh) about it from time to time when he has the strength.
Our story began almost 3 months ago. Because he is living away from home my husband and I weren't aware of how sick he was getting. Our son is 18, turning 19 on Christmas day also has anxiety which has made this harder. Around 6 weeks ago he attended the ER via ambulance. After doing virtually nothing he was sent home...the doctor telling him he was going through drug withdrawal (he has been honest to the doctor and us about his use of pot). He then had to find his own way home at 11:30pm living 45minutes from the hospital and still very unwell.
During the next 4 weeks his health deteriorated substantially. He was barely able to eat, had non stop diarrhoea and lost 20kgs in only a couple of weeks. Eventually a relative virtually dragged him to the doctor (his anxiety and humiliation from the hospital had prevented him from going sooner). Blood tests were ordered. As soon as they came back a few days later he was ordered to go to the ER first thing in the morning, that they will be expecting him. I had argued with him all afternoon about coming down to him. He didn't want me to come down and be worried. Eventually the adult relative realised what was going on and told me about it. She assumed I knew he was very sick. I immediately drove down to be with him.
We attended the ER the following morning. Josh could barely get out of the car, he was so weak. The doctors and nurses didn't hesitate to begin testing and begin administering IV fluids. By nightfall this day (Wednesday) he had begun to deteriorate further and required 4 blood transfusions. A colonoscopy and gastroscopy was scheduled for the following day (Thursday). The doctors were already confident that he had Crohns disease or Ulcerative Colitis. Several medications had been started mostly intravenously at this stage. They did have to be increased because of the pain. The tests came back confirming Crohns Disease.
After 6 days in hospital he was released and came home with us (around 2 1/2 hours from where he lives).
Within a few days of our son being home, smiling and eating well he began to slip backwards again. He became very lethargic, pale, the diarrhoea began to get worse again, he was eating lesd, his pain increased and he began to bleed again. At 6am on Monday (16th Dec ) we attended the ER where a myriad of tests were taken, fluids administered and he was admitted to hospital. He was given many IV medications as well as what he already was on. A local Gastroenterologist (who was not even on call) had heard our son, Josh, was admitted and said he would be there at 5:30pm to do another colonoscopy to see what was going on.
The news was not good. Josh has Crohns Disease through virtually all of his large bowel and at least 5cm of the small intestine. There are many large ulcers, some of which had almost perforated the outer bowel lining. There were many ulcers throughout the bowel at various stages of healing, some of which had recently stopped bleeding.
The doctor is doubtful that Josh will have many stages of remission and if he does it is likely it won't last long. Discussion about removing the bowel has already started but for now other medications will be tried.
We are hoping with all our might that the crohns settles enough for him to have some sort of normality in his life even if only to put some weight on and regain strength.
That's our story so far. I'm about to shower and go in to him. It's around 7:30am here in Australia.
Hopefully, with treatment, he can soon begin to see some improvement! Similar to what Brian'sMom said, my aunt was in terrible shape when she was diagnosed and, even after diagnosis, had a hard time getting into remission but, she then was put on remicade and imuran and saw huge improvement. She's now been in remission for 10-15 years and living an active, happy life!
