Tami Lynn
Forum Angel
Hello everyone! Wow - it's so great to see that this forum is growing and still going strong! It's been a long time since I last dropped by. I really should come by more often.
A quick update on my situation for anyone who knows or remembers me from the beginning.
In 2002 I had my last bowel resection: only this time it wasn't for active Crohns, but to remove a tennis-ball sized mass that was almost completely obstructing the lumen. After surgery, the surgeon told me that there were two more strictures that he didn't remove. He was trying to conserve as much small bowel as possible and avoid giving me short-bowel syndrome. He did say that more than likely the strictures would need to be removed surgically at some point in the future.
Well, those strictures are still there (alive and well) and have caused me problems off and on with partial bowel obstructions for these past 8+ years. Honestly, my good days have seemed to outweigh my bad ones for a long time now, so I really can't complain. I don't have any symptoms of active Crohns and that is a blessing I cannot even describe! However, after having my most recent CT enterography, my GI suggested that a visit with the surgeon was in order.
The bottom line, after speaking with the surgeon, is he would like me to choose to have an elective resection before an incident caused by the strictures becomes a "major incident". More or less he thinks I should call the shots rather than allow my health to dictate what needs to be done. He stressed that allowing my health to deteriorate would make surgery and recovery all the more difficult, and that timing was key. He also said that he didn't advocate "rushing" into surgery...so what a precarious matter that has left me with in respects to trying to decide when "the right" time is.
Since the decline has been so gradual, sometimes it's difficult to access when "it's time" to act. He said to watch my weight and to access the situation by determining how much I have to alter my diet to avoid an obstructive incident. I told him I would start to blog about it, so I'll be able to guage the situation better over time.
I really don't want to have surgery again! -ugh- I just started going to school and am trying to have a career at 40+ years of age, now that my children are grown.
I'm not sure what to do, but I did end up having an "incident" just the other night and have noticed a progressive decline recently. Why did this all seem to coincide with my visit with the surgeon?! I swear I must've cursed myself by going to see the doctor! But I will hope against hope that things will resolve as they have in the past and that I will be able to maintain the status quo through diet, rest and moderation. My goal is to hold out for AT LEAST the next 2-3 years until I can graduate from court reporting school. Let's hope and pray I can make it that long!
My daughter, Alyssa, who was diagnosed with CD in 2007 at the age of 16, got married in May of 2010. She had her first re-section for Crohns in October of 2009 and is currently taking Pentasa and Remicade to try to control her symptoms.
For anyone out there who has lived with strictures caused by Crohns, do you know if it's possible to go on indefinitely living with them? My surgeon claims that I will most certainly need surgery as time goes on, and that the strictures will eventually get worse and cause a complete obstruction. But, if I'm not having any active inflammation from Crohns, I don't understand why this has to be. I feel like I am caught in a vicious cycle on the surgical merry-go-round. When does it ever end?!
I'd love to hear from people who have experience with the type of Crohns that causes strictures - especially small bowel strictures and to hear what works for them. The way the doctor explained it to me, there are different types of Crohns. Some people get fistulas and abscesses and some get stricture-causing CD.
Thanks for letting me ramble on...
A quick update on my situation for anyone who knows or remembers me from the beginning.
In 2002 I had my last bowel resection: only this time it wasn't for active Crohns, but to remove a tennis-ball sized mass that was almost completely obstructing the lumen. After surgery, the surgeon told me that there were two more strictures that he didn't remove. He was trying to conserve as much small bowel as possible and avoid giving me short-bowel syndrome. He did say that more than likely the strictures would need to be removed surgically at some point in the future.
Well, those strictures are still there (alive and well) and have caused me problems off and on with partial bowel obstructions for these past 8+ years. Honestly, my good days have seemed to outweigh my bad ones for a long time now, so I really can't complain. I don't have any symptoms of active Crohns and that is a blessing I cannot even describe! However, after having my most recent CT enterography, my GI suggested that a visit with the surgeon was in order.
The bottom line, after speaking with the surgeon, is he would like me to choose to have an elective resection before an incident caused by the strictures becomes a "major incident". More or less he thinks I should call the shots rather than allow my health to dictate what needs to be done. He stressed that allowing my health to deteriorate would make surgery and recovery all the more difficult, and that timing was key. He also said that he didn't advocate "rushing" into surgery...so what a precarious matter that has left me with in respects to trying to decide when "the right" time is.
Since the decline has been so gradual, sometimes it's difficult to access when "it's time" to act. He said to watch my weight and to access the situation by determining how much I have to alter my diet to avoid an obstructive incident. I told him I would start to blog about it, so I'll be able to guage the situation better over time.
I really don't want to have surgery again! -ugh- I just started going to school and am trying to have a career at 40+ years of age, now that my children are grown.
I'm not sure what to do, but I did end up having an "incident" just the other night and have noticed a progressive decline recently. Why did this all seem to coincide with my visit with the surgeon?! I swear I must've cursed myself by going to see the doctor! But I will hope against hope that things will resolve as they have in the past and that I will be able to maintain the status quo through diet, rest and moderation. My goal is to hold out for AT LEAST the next 2-3 years until I can graduate from court reporting school. Let's hope and pray I can make it that long!
My daughter, Alyssa, who was diagnosed with CD in 2007 at the age of 16, got married in May of 2010. She had her first re-section for Crohns in October of 2009 and is currently taking Pentasa and Remicade to try to control her symptoms.
For anyone out there who has lived with strictures caused by Crohns, do you know if it's possible to go on indefinitely living with them? My surgeon claims that I will most certainly need surgery as time goes on, and that the strictures will eventually get worse and cause a complete obstruction. But, if I'm not having any active inflammation from Crohns, I don't understand why this has to be. I feel like I am caught in a vicious cycle on the surgical merry-go-round. When does it ever end?!
I'd love to hear from people who have experience with the type of Crohns that causes strictures - especially small bowel strictures and to hear what works for them. The way the doctor explained it to me, there are different types of Crohns. Some people get fistulas and abscesses and some get stricture-causing CD.
Thanks for letting me ramble on...