Just a quick question. My son had a colonoscopy in January 2012, It showed he had a stricture and were not able to go into his terminal ileum (where he had his original problem).He was started on remicade in the hopes that it would reduce the thickening. There has not been much progress on the remicade so we went for a second opinion and the new doc is considering surgery, but wants to do another colonoscopy to see if the remicade had any effect on the stricture or if it is scarred over. This does seem reasonable, but it has only been 8 months since the last colonoscopy. Do they commonly do them that often?
Another colonoscopy?
- Thread starter awmom
- Start date
Help Support Crohn's Disease Forum:
- Joined
- Aug 28, 2011
- Messages
- 3,376
I am not sure how often others have colonoscopies - our GI is quite reluctant to do one unless really necessary. I would think that if your doc is wanting to check thickening of an area then it would also show up in an MRI or MRE if your son drank the contrast drink. I'm sure someone with more knowledge in this area will pop on soon though.
- Joined
- Apr 15, 2012
- Messages
- 14,730
Fwiw DS had one in sept 2011 for dx then in June 2012 before starting Remicade .
Not ideal but was needed .
He had two ct scans and one mre as well.
Not ideal but was needed .
He had two ct scans and one mre as well.
- Joined
- Apr 26, 2012
- Messages
- 6,338
My son has only had the one colonoscopy before dx but at our last GI appt the doc discussed plans going forward. He said tries to avoid invasive tests but if there was stricturing shown in the first colonoscopy and issues were still ongoing(after treatment has had time to work) he would opt for an imaging test most likely MRE then possibly a colonoscopy to verify inflammation or scar tissue before moving forward in deciding on which further treatment would be most beneficial. I don't know how much this info helps your case but possible the colonoscopy is to check and see if it is inflammation or scar tissue? I hope your son is feeling well soon!!
- Joined
- May 23, 2011
- Messages
- 1,549
Izzi had two in 18 months-I think it depends on your circumstances. Ask your doc-will an MRE do just as good of a job in finding the answer? Will your son need to be sedated for a MRE? (Not sure how old/mature he is). If the test results will affect his treatment plan, I would guess that it is necessary regardless of how long since his last test.
(((HUGS)))> I know it can be tough. I used to avoid monthly labs. Now Izz asks if it is time to go again yet lol! In any case I hope it has improved!!!
(((HUGS)))> I know it can be tough. I used to avoid monthly labs. Now Izz asks if it is time to go again yet lol! In any case I hope it has improved!!!
Thanks so much for your responses, it helps immensely to hear your experiences. He has never done an MRE (has done MRI, barium swallow, and 2 scopes). I now feel grateful that they are checking things out since they are considering surgery. Thank you again, and wish all the best for your kiddos!
DustyKat
Super Moderator
- Joined
- May 8, 2010
- Messages
- 23,973
Hey awmom,
Given the circumstances I would probably opt for both a scope and an MRE and I personally don't think it matters what the interval between scopes is given surgery is being suggested.
No amount of imaging available at the present time can give as an accurate a picture as seeing the colon/small bowel first hand. I think it would be worthwhile for the doc to visualise what he is able to reach and take biopsies as a way of gauging severity and then if the area can't be pushed through move onto an MRE so the length of the affected area can be estimated.
If surgery is required then having both tests done will also give a good insight for the surgeon as to what he will likely encounter when he operates.
Good luck and keep us posted!
Dusty. xxx
Given the circumstances I would probably opt for both a scope and an MRE and I personally don't think it matters what the interval between scopes is given surgery is being suggested.
No amount of imaging available at the present time can give as an accurate a picture as seeing the colon/small bowel first hand. I think it would be worthwhile for the doc to visualise what he is able to reach and take biopsies as a way of gauging severity and then if the area can't be pushed through move onto an MRE so the length of the affected area can be estimated.
If surgery is required then having both tests done will also give a good insight for the surgeon as to what he will likely encounter when he operates.
Good luck and keep us posted!
Dusty. xxx
Thanks DustyKat. We are scheduled for the scope on the 23rd and will speak with the surgeon at the same time. I will be sure to ask about an MRE if they are unable to get past the stricture.....I would want to know how much is affected before going in!! We also have the possibility to go to Boston for a 2nd opinion (actually it's the 3rd since our regular GI said there was nothing more that he could do). What are your thoughts about getting still another opinion? I want to be respectful of the docs time and expertise here and in Boston and also move on whatever treatment is recommended, but it scares me to think that I might make the wrong decision or of not having researched the options fully.
DustyKat
Super Moderator
- Joined
- May 8, 2010
- Messages
- 23,973
I understand completely where you are coming from but this is your baby and you must be satisfied that you are making the right decision. Surgery if final, once that piece of bowel is removed there is no going back so if having a third opinion is what gives you some level of acceptance of the decision that has to be made then do it.
When Matt needed surgery I was unexpectedly in the position of receiving a number of opinions because he had stays in two different hospitals and was seen by a number of surgeons and gastroenterologists, including specialists in Crohn's, due to it being around Christmas time, and our Summer, so they were all on their holiday rotation. I was able to question each one of them and they were all of the same opinion, surgery was the only option.
Validation doesn't lessen the heartbreak you feel for your child but believe me, it does make the decision more acceptable and less fearful and with that you are better able focus and deal with what lies ahead.
Dusty. xxx
When Matt needed surgery I was unexpectedly in the position of receiving a number of opinions because he had stays in two different hospitals and was seen by a number of surgeons and gastroenterologists, including specialists in Crohn's, due to it being around Christmas time, and our Summer, so they were all on their holiday rotation. I was able to question each one of them and they were all of the same opinion, surgery was the only option.
Validation doesn't lessen the heartbreak you feel for your child but believe me, it does make the decision more acceptable and less fearful and with that you are better able focus and deal with what lies ahead.
Dusty. xxx
Thanks Dusty, I know you understand and it helps immensely ....I will call Boston tomorrow and explain the situation and hopefully we can get the ball rolling. Sometimes I feel paralyzed. It was fortunate that you were able to get several opinions for Matt. It must have been difficult for all of you, especially if it came out of left field. But like you said, if it's the only option, then you do what you have to do and you leave with a sense that you have done what was best. Did it help Matt alot? How old was he? What were his symptoms and his surgery? The problem in our case is that Nico feels fairly well, no pain, no upset stomach as long as he follows a diet. The problem is the weight gain and the limited amount and types of food he can eat, and I worry about his bones. Sigh....I'm sure all will turn out for the best. Now I'm worried because he is going to go to a lake house with a friend's family and he will be away for four days. I will send some food with him, but I know he will eat other stuff and not get sleep, and he might feel lousy.....the worries never end!!! Thanks for talking Dusty
DustyKat
Super Moderator
- Joined
- May 8, 2010
- Messages
- 23,973
It was out of left field hun. I think as the time passed after Sarah's diagnosis I had convinced myself that she was going to be it in our family. Matt only had one week of extremely mild symptoms but I guess something must have been niggling at me because I asked the doctor to do inflammatory markers on him and lo and behold they were elevated. We had a diagnosis within two weeks. I was gobsmacked!
My daughter was 14 and undiagnosed at the time of her surgery so her symptoms had progressed to being severe. Matt was 17 and his symptoms prior to diagnosis were a couple of random vomits and a week with lack of appetite, that's it. Three weeks after diagnosis he developed complications, a queried micro perforation and abscess, which later proved to be correct. It was this that led to surgery.
Both of my children have fistulising Crohn's located in their terminal ileum and it was complications that led to their surgery.
Sarah had her resection in July 2006 and Matt in April 2011 and both have been in remission since their surgeries. Surgery saved their lives and they are now both at university and living life to the full.
The inability to have a wide and varied diet and the malabsorption that can and may well exist with inflammation and scarring can and often does affect their growth, development and general well being. So even though there may not be overt symptoms of disease there is often insidious changes happening that can go unnoticed for quite some time.
Oi, Oi, Oi...the worry! It surely does never end! :hug:
Dusty. xxx
My daughter was 14 and undiagnosed at the time of her surgery so her symptoms had progressed to being severe. Matt was 17 and his symptoms prior to diagnosis were a couple of random vomits and a week with lack of appetite, that's it. Three weeks after diagnosis he developed complications, a queried micro perforation and abscess, which later proved to be correct. It was this that led to surgery.
Both of my children have fistulising Crohn's located in their terminal ileum and it was complications that led to their surgery.
Sarah had her resection in July 2006 and Matt in April 2011 and both have been in remission since their surgeries. Surgery saved their lives and they are now both at university and living life to the full.
The inability to have a wide and varied diet and the malabsorption that can and may well exist with inflammation and scarring can and often does affect their growth, development and general well being. So even though there may not be overt symptoms of disease there is often insidious changes happening that can go unnoticed for quite some time.
Oi, Oi, Oi...the worry! It surely does never end! :hug:
Dusty. xxx
Wow, that is some story......you must have been blown away! And what a joy that they are both doing so well!! Are they taking any maintenance meds? I know Nico MUST have something brewing since he cannot eat/gain weight normally. I hope they are able to visualize the area so that we can make a well informed decision. In the meantime I will proceed setting up a second opinion, but I have the feeling that is more for my peace of mind than anything. Thanks again Dusty, you are so helpful.
DustyKat
Super Moderator
- Joined
- May 8, 2010
- Messages
- 23,973
Thanks awmom.
There is nothing wrong with peace of mind. I don't think there is anything harder in this world than having to make a decision on behalf of someone else, especially when that someone else is the very person you would lay your life down for, your child. :hug:
Both of my children are on Imuran (Azathioprine) for maintenance.
Dusty. xxx
There is nothing wrong with peace of mind.
I don't think there is anything harder in this world than having to make a decision on behalf of someone else, especially when that someone else is the very person you would lay your life down for, your child. :hug: Both of my children are on Imuran (Azathioprine) for maintenance.
Dusty. xxx
