- Joined
- Aug 16, 2010
- Messages
- 5
My husband was diagnosed with Crohn's disease in his terminal ileum in 2002 at the age of 24. He had been suffering horrible stomach pains for about eight months before a particularly nasty episode sent us to the ER. They almost sent us home after several routine tests gave no clue as to what was causing the pain. It was only after they actually paid close attention to where he said the pain was that they ordered a CT and found his official diagnoses. I remember the intern saying "It can't be Crohn's disease, he's too young." :ybatty:
His disease was very aggressive and advanced at this point due to his waiting so long to seek treatment. We consulted a specialist and it was recommended he have a small bowel resection. My husband did not have health insurance at the time and needed the surgery immediately as all of the medications they tried on him were not managing the pain or flare ups. He tried them all Asacol, Pentasa, besides a constant dose of Prednisone, nothing worked. We were living together at this point, with no immediate plans to marry anytime soon, however, life sometimes has a different plan. We were married in a small civil ceremony with our immediate family present so I could immediately add him to my health insurance coverage and he could have the surgery he needed. He had the surgery in early 2003.
He seemed to have little problems for awhile after surgery, but soon enough he had a flare up. His flare ups usually always come on suddenly and with a possible blockage requiring a hospital stay. They put him on Imuran and he seemed to managing well with that until he had yet another flare up. This time his doctor decided that Imuran was not working and he started to receive Remicade infusions. Once again the same pattern, seemed to be doing fine on that, however, his last colonoscopy revealed even further narrowing in the ileum and his doctor had him do an upper GI and small bowel series. Lately he had been having back pain, in a different place than his regular Crohn's pain. Turns out, he has active disease in another new spot further up from his normally active spot. Doctor wants to do surgery #2 at this point. We have an appointment with the surgeon coming up in September. They said they will take anywhere from 4 to 12 inches depending on what they find with this new spot. They may be able to just clean it up a bit to open it up rather than take it out, but the normal spot is almost completely narrowed and doc says it has to go. He does not believe Remicade can help open it up any, though we do believe the Remicade has helped tremendously, but I fear it took too long before he started it to truly do its job. However, it must be doing something right because he has been feeling alright other than having the back pain.
Along with all of this, he has also had a host of other conditions secondary to the Crohn's, including MRSA infections, arthritis, Vitamin B12 deficiency, and recently they are testing him for a copper deficiency and he also had C-Diff. Every year we thank our lucky stars IF he stayed out of the hospital, which rarely has happened, maybe one year that I can remember. While we have health insurance, it gets hard to keep up with the bills coming in and dealing with your max out of pocket year after year. It seems we can never get ahead. He will have to be off of work for 6-8 weeks following surgery since he works construction, not a whole lot of light duty work for him there. He already used all his vacation time dealing with a kidney stone (oh yes, I forgot another lovely thing that comes with the territory!), the second he has had in three years or so. Sometimes it seems the side effects and conditions that come along with Crohn's are as bad as the disease itself.
I have stumbled upon this forum before when googling a lot of Crohn's related questions and have found it helpful. I decided to join so I could get some support from people who understand and also, more importantly, I believe this is a great place to find information outside of the doctor's office from people who have experienced the same thing and may be able to offer guidance. I really love my husband's GI doctor, however, I am a firm believer in being your own advocate and have often got to the root of his problems through my own research after not being happy with how a doctor handled it. Since I basically act as his nurse most of the time, doing all I can to take care of him, the stress of just wanting a normal life free from the disease is sometimes hard to bear. You get to feel alone and people don't seem to understand sometimes. If my dad bugs me one more time about why we can't take a vacation this year I am going to scream. Healthy people can't grasp the concept of using all of your vacation time to be in the hospital or stay home and take care of your sick husband. Anywho, that is my piece and I look forward to getting to know you and hope we can all help each other stay on top of this disease.
:grumpy:
His disease was very aggressive and advanced at this point due to his waiting so long to seek treatment. We consulted a specialist and it was recommended he have a small bowel resection. My husband did not have health insurance at the time and needed the surgery immediately as all of the medications they tried on him were not managing the pain or flare ups. He tried them all Asacol, Pentasa, besides a constant dose of Prednisone, nothing worked. We were living together at this point, with no immediate plans to marry anytime soon, however, life sometimes has a different plan. We were married in a small civil ceremony with our immediate family present so I could immediately add him to my health insurance coverage and he could have the surgery he needed. He had the surgery in early 2003.
He seemed to have little problems for awhile after surgery, but soon enough he had a flare up. His flare ups usually always come on suddenly and with a possible blockage requiring a hospital stay. They put him on Imuran and he seemed to managing well with that until he had yet another flare up. This time his doctor decided that Imuran was not working and he started to receive Remicade infusions. Once again the same pattern, seemed to be doing fine on that, however, his last colonoscopy revealed even further narrowing in the ileum and his doctor had him do an upper GI and small bowel series. Lately he had been having back pain, in a different place than his regular Crohn's pain. Turns out, he has active disease in another new spot further up from his normally active spot. Doctor wants to do surgery #2 at this point. We have an appointment with the surgeon coming up in September. They said they will take anywhere from 4 to 12 inches depending on what they find with this new spot. They may be able to just clean it up a bit to open it up rather than take it out, but the normal spot is almost completely narrowed and doc says it has to go. He does not believe Remicade can help open it up any, though we do believe the Remicade has helped tremendously, but I fear it took too long before he started it to truly do its job. However, it must be doing something right because he has been feeling alright other than having the back pain.
Along with all of this, he has also had a host of other conditions secondary to the Crohn's, including MRSA infections, arthritis, Vitamin B12 deficiency, and recently they are testing him for a copper deficiency and he also had C-Diff. Every year we thank our lucky stars IF he stayed out of the hospital, which rarely has happened, maybe one year that I can remember. While we have health insurance, it gets hard to keep up with the bills coming in and dealing with your max out of pocket year after year. It seems we can never get ahead. He will have to be off of work for 6-8 weeks following surgery since he works construction, not a whole lot of light duty work for him there. He already used all his vacation time dealing with a kidney stone (oh yes, I forgot another lovely thing that comes with the territory!), the second he has had in three years or so. Sometimes it seems the side effects and conditions that come along with Crohn's are as bad as the disease itself.
I have stumbled upon this forum before when googling a lot of Crohn's related questions and have found it helpful. I decided to join so I could get some support from people who understand and also, more importantly, I believe this is a great place to find information outside of the doctor's office from people who have experienced the same thing and may be able to offer guidance. I really love my husband's GI doctor, however, I am a firm believer in being your own advocate and have often got to the root of his problems through my own research after not being happy with how a doctor handled it. Since I basically act as his nurse most of the time, doing all I can to take care of him, the stress of just wanting a normal life free from the disease is sometimes hard to bear. You get to feel alone and people don't seem to understand sometimes. If my dad bugs me one more time about why we can't take a vacation this year I am going to scream. Healthy people can't grasp the concept of using all of your vacation time to be in the hospital or stay home and take care of your sick husband. Anywho, that is my piece and I look forward to getting to know you and hope we can all help each other stay on top of this disease.
:grumpy:
