N had his colonoscopy a couple of weeks ago. The GI said he dilated the stricture and he could see no inflammation on either side of it, which he said meant that the Remicade is working. The plan was to see if the dilation helped him to eat more, gain weight, and feel better, in which case there would be no need for surgery, and we would also know that it is the stricture that is causing all the problems (no appetite, no weight gain/growth, very limited food choices occasional blood, D, fatigue...no classical symptoms of obstruction). Apparently the dilation did not help as his symptoms persist. The doc seems to think that it is the stricture that is causing this even though he said it was a small area. My question is can this really be causing the symptoms even though there is no inflammation, the scarred area is small (I think he said 3-4 cm). I am concerned that he would have the surgery and that it would not help, and he is so thin it makes me want to cry. Can there be anything else that is causing his troubles? We are in the process of getting a second opinion but am wondering if anyone has any thoughts. I am so anxious to get a handle on this so he can have one normal high school year and then be able to navigate college life on his own!!
Update on N
- Thread starter awmom
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Sorry to hear he is still having problems. I don't remember exactly what's been done before but I'm sure EN has been mentioned to you. Has he tried this? Even if not done 'exclusively' (ie no food, formula only), as a supplement it may help him gain weight. My son uses EN as a supplement (actually, for now his only treatment) and he ingests 1500 calories per day, 5 nights per week (he uses an NG tube overnight).
And, I apologize if this has been mentioned on other posts to you... but, if he has inflammation in his small intestine, this will not show on a colonoscopy. As far as I know, an MRE or pillcam will give a better indication if there is inflammation somewhere in his small intestine. But, be careful re the pillcam if he has stricturing - I have read on this forum of a couple of members who have had pillcams get 'stuck' and have to be surgically removed! If you go this route, please ask about a 'trial' dummy pillcam which dissolves on its own if it gets stuck.
Good luck!!! :ghug:
And, I apologize if this has been mentioned on other posts to you... but, if he has inflammation in his small intestine, this will not show on a colonoscopy. As far as I know, an MRE or pillcam will give a better indication if there is inflammation somewhere in his small intestine. But, be careful re the pillcam if he has stricturing - I have read on this forum of a couple of members who have had pillcams get 'stuck' and have to be surgically removed! If you go this route, please ask about a 'trial' dummy pillcam which dissolves on its own if it gets stuck.
Good luck!!! :ghug:
DustyKat
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Hey awmom,
I so sorry to hear that the dilation hasn't worked. :hug:
Certainly the symptoms you are describing are consistent with the stricture. The remicade may well have eliminated the inflammation but unfortunately the remaining scar tissue is problematic. As Tess has mentioned, has disease been ruled out further into the small bowel that may also account for ongoing issues?
Has your son had bloods done recently that may give an idea as to what is happening in a and inflammatory and nutritional sense? Much like my Matt has just had done...
FBC
E/LFT's
B12
Folate
Iron Studies
Vit D
ESR
CRP
Vit C
Calcium
Magnesium
Zinc
POH4
...it just may give you a clearer idea of what the stricture is doing both symptom and absorption wise.
I can only speak from my own children's experiences where surgery was the only option. The outcome for both of them has been outstanding. That is not to say that surgery, if it is an ileocaecal resection, can leave its own legacy for some, bile salt malabsorption diarrhoea, although it can be managed very effectively and for many it is not an issue. That aside surgery gave my children their lives back. They both live life to the full unhindered by illness or symptoms and both of their surgeries would have been more extensive than what your son would require if the amount you have quoted is correct.
I know, as many here do, the heartache of seeing your child suffering and fading away. Tess also brings up a very good point about using EN. IIRC your son used this before with some degree of success?? If so maybe it is worth a revisit as an overnight NG tube treatment??
I know surgery is normally considered as a last resort and that isn't a bad thing but I do sometimes wonder if in certain circumstances it should be brought into the mix at an earlier timeframe and one of those times is when there is persistent issues with growth and weight.
Good luck hun. I hope you soon have clear direction and lasting relief for your lad. :hug:
Dusty. xxx
I so sorry to hear that the dilation hasn't worked. :hug:
Certainly the symptoms you are describing are consistent with the stricture. The remicade may well have eliminated the inflammation but unfortunately the remaining scar tissue is problematic. As Tess has mentioned, has disease been ruled out further into the small bowel that may also account for ongoing issues?
Has your son had bloods done recently that may give an idea as to what is happening in a and inflammatory and nutritional sense? Much like my Matt has just had done...
FBC
E/LFT's
B12
Folate
Iron Studies
Vit D
ESR
CRP
Vit C
Calcium
Magnesium
Zinc
POH4
...it just may give you a clearer idea of what the stricture is doing both symptom and absorption wise.
I can only speak from my own children's experiences where surgery was the only option. The outcome for both of them has been outstanding. That is not to say that surgery, if it is an ileocaecal resection, can leave its own legacy for some, bile salt malabsorption diarrhoea, although it can be managed very effectively and for many it is not an issue. That aside surgery gave my children their lives back. They both live life to the full unhindered by illness or symptoms and both of their surgeries would have been more extensive than what your son would require if the amount you have quoted is correct.
I know, as many here do, the heartache of seeing your child suffering and fading away. Tess also brings up a very good point about using EN. IIRC your son used this before with some degree of success?? If so maybe it is worth a revisit as an overnight NG tube treatment??
I know surgery is normally considered as a last resort and that isn't a bad thing but I do sometimes wonder if in certain circumstances it should be brought into the mix at an earlier timeframe and one of those times is when there is persistent issues with growth and weight.
Good luck hun. I hope you soon have clear direction and lasting relief for your lad. :hug:
Dusty. xxx
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We've had no experience with strictures or surgery, just want to offer my support. It's so hard to make what we feel are the right choices for our kids. If we put them through something, we want it to be the answer or else feel guilty for having done it. I would certainly try the EN and the pill cam before I went for surgery. I hope you get some answers soon!
