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Yet another scope...just 3 months since the last one?

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Ulcerative Colitis
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Posted 8/10/2014 3:53 AM (GMT 0)
Howdy!

My 4 yo has been on an elimination diet ever since the Remicade failure. We are still working on completely eliminating some foods as I have found that corn is ridiculously hard to eliminate. I had no idea that maltodextrin had corn in it. Anywho...
We have gone to a new GI. He initially dismissed my concerns that we were not dealing with UC, until, that is, he got the previous biopsies. He and the new pathologist do not agree with the previous ones. They say it does not look like IBD. All of this is good news to me. BUT...he wants to do a fresh scope. I want to scream. Miralax was its own special kind of hell the last time my son had to take it and he bled like a stuck hog after his first colonoscopy.

Here is my question: what has been your experience with having scopes so close together? Are we setting my son up for another flare if this is indeed IBD? Does Miralax cause anybody else untold misery? And why can't they just trial Asacol or something similar for a few months and THEN do a new exam?
Posted 8/10/2014 5:02 AM (GMT 0)
Interesting situation. I don't think I personally could handle prepping 2x in 3 months. It is hell. I do understand that it sounds like the results of the last scope are inaccurate and to get a proper diagnosis and treatment plan, you may need to do another scope. It's a really difficult situation. I would want ot get to the bottom of this. Let's say it isn't IBD and it's treatable, and you don't know... but, at the same time, what would it be? If it were a bacteria, you could do a stool test. If it were IBS, that can be very difficult to treat and diagnose too. Miralax prep was tough for me. I wonder if there is something easier he can use? I have done 3 or 4 different preps and none were easy at ALL. Did you suggest trying Asacol and waiting a little while? If his symptoms aren't terrible, that may be an options. I can also see not wanting to give a 4 yo anything unnecessarily. I am so sorry. Maybe a stool test would shed some light, calprotectin and be a good test for detecting IBD but it's not that accurate compared to a scope. Of course, you could do tests for bacteria at the same time and buy him some time before getting another scope. Poor child. Is there a way to have the pathology reviewed again? or perhaps a sigmoidoscopy. Was the inflammation in the rectal area? If so, you may be able to get biopsies that confirm IBD without doing a full prep. I've done sig scope without prepping.
Posted 8/10/2014 7:29 AM (GMT 0)
If they doubt it's UC, what do they think it could be?

Do they think he still has C. diff? Can they confirm that with more stool samples? I'm not sure what other diagnoses they are considering but whatever the other possibilities are, ask how they can test for them without another scope.

Sounds like you're trying diet mods which is a good idea. Have you considered any other "benign" (benign as in Potentual treatments that don't have long-lasting/dangerous side effects) options?

One is probiotics. There's Florastor and Culturelle for kids. I've had good results with Culturelle for myself. I also take Align which your doctor can say if it's ok for children.

There isn't a serious down side to trying probiotics. Sometimes they give people diarrhea but that goes away within a day or two of stopping.

Another option to try is resistant starch. I eat potato starch mixed with applesauce and cinnamon everyday. The starch is hardly noticeable so your son would probably eat it without question.

Whatever you try, start one thing at a time, and space the start dates out so you know what causes good, bad, or no results.

I hope you get answers soon. You have my sympathy. My son is 5 and I worry about UC everytime something in the toilet doesn't look "normal." It must be so, so hard.
Posted 8/10/2014 1:23 PM (GMT 0)
We repeat stool cultures every 2-3 weeks. He continues to show negative for C. diff and other bacterial infections. They did the calprotectin test but I don't know what it showed or what it means.

At this point, it's basically IBD or food allergies.

He is taking VSL3 Kids and Florastor.
Posted 8/11/2014 2:37 AM (GMT 0)
No wonder you feel like screaming! I think its too soon to put him through it all again, how terrible for him and you! Is there any way you can put it off for a while...
Posted 8/15/2014 2:07 PM (GMT 0)
Thank you insurance! Hahahaha...Our insurance won't cover twice in less than 6 months.

New GI is putting him on Sulfasalazine for now. We will plan a scope for 3 months from now. Hallelujah!
Posted 8/15/2014 2:24 PM (GMT 0)
I always wonder why they take pictures during colonoscopy but don't record on cd/DVD? If they do then if we go for second opinion, we won't have to go through colonoscopy again. May be something to ask.
Posted 8/15/2014 3:55 PM (GMT 0)
So glad your son doesn't have to go through that again. It always annoys me that most new dr.s want to take their own look. Although I think most doctors are scope happy anyway. Hope your boy feels better soon!
B
Posted 8/16/2014 3:40 PM (GMT 0)
"I always wonder why they take pictures during colonoscopy but don't record on cd/DVD? If they do then if we go for second opinion, we won't have to go through colonoscopy again. May be something to ask."

The colonoscopy video is recorded on the hard drive. They don't want to give you a copy, so they claim it isn't recorded.

But your point is excellent. It's also obvious that they would need the recording to defend themselves in court if the patient develops colon cancer.

Apparently most patients don't think this through, so the medics get away with telling this silly story about colonoscopy videos not being recorded.

I think most doctors would give the video recording to another doctor; they just won't give it to you.

Perhaps they don't want to be bothered with questions from patients about the video.
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