Help for mom in anticipation of colonoscopy results

[Poached Pear]

Hi,
I am new. Actually I am not new, I have been a lurker for a while. My 17 year old daughter was diagnosed with CD 6 months ago. She went in for an appendectomy and came out with an ileocecectomy and a diagnosis. She had no GI symptoms at all except for a "stitch" in her right upper quandrant.

So, friends, I have been in denial the past 6 months and on Monday my daughter has her colonoscopy. Her ESR is 15 and her fecal calprotectin is 126. I am writing for support. If there is bad news, I fear I may fall apart. What advice do you all have. I should start meditating. I am not kidding.

She is on no meds, just supplements and has been feeling well. yesterday she had some pain in her right upper quandrant - I will ignore for now unless it gets worse. Thank you. Special shout out to Dusty, hi there Dusty, I have gone public!

 

[crohnsinct]

Wow! Your story sounds so similar to Dusty's. I am sorry about the dx. Surgery can bring about remission in many but in order to stay there a patient typically needs a maintenance med.

I am not good about waiting for results so can't help you with the waiting part but try not to be scared of the results. The hard part is over. Disease or not. You know the devil you are dealing with so the next step is just how is it doing and what are you going to do about it.

rather than worry, I would spend my time educating myself as to treatments so I was ready for what ever the doctor throws my way. Surprises are second to the waiting...I don't do well with surprises!

Good luck! I hope the scopes and biospies don't show much more damage and that you are able to make decisions in a relaxed manner.

 

[Jmrogers4]

Welcome, Yeah, no patience here either unfortunately there seems to be a lot of waiting. Waiting for test results, waiting for meds to work, waiting ,waiting, waiting.
As CIC says you know what you're dealing with so just a matter of deciding the next step. I'm a big one for looking ahead (have I mentioned I hate waiting ) I want to know if x is not working what are my choices and based on xyz I'm going to do this... It helps me feel like I have some control over this disease of which I have no control.
Glad you came out of lurking.

 

[Maya142]

Unfortunately, there's not much you can do but wait for the results. There's a lot of great information here - like everyone has said it's a good idea to educate yourself on the possible med choices if you haven't already. You could also look up EEN which has great results in children for inducing remission.

Really hope scopes look good! Good luck!

 

[Sascot]

Good luck. My son was also on no meds and symptom free for about 6 months. The only thing that changed was his calprotectin which went up again so we started mercaptopurine. Hope the scopes go okay.

 

[CarolinAlaska]

I'm glad that you were able to come out of the closet. We all need personal encouragement regularly to help keep the stress levels down... After your original surprise of Crohn's, I can see why you might be anxious. I had a lot of denial at first as well. I hope you feel free to call on us for more encouragement and questions, and I hope there are no more surprises!

 

[Lindseyw4]

Hey there's not a lot to worry about. When my son got his done, the Dr. went over the images with me right away and showed the findings. Sounds like your daughter is already doing great. I was most nervous about the anesthesia.

 

[Poached Pear]

Thank you all. I very much appreciate your support. I was absolutely sure that my question didn't post because my phone died as I hit post. Then (lurking again) I came across my own post. I could honestly cry (actually I am, sort of) - combination of grief and relief. The support is wonderful. I am glad I came out of the closet!

 

[DustyKat]

Hey Poached Pear! :bigwave:

Good to see you.

You have been given fab advice so there is little for me to add. As has been said read, read, read, ask, ask, ask, this will set you up to be the best possible advocate you can for your lass. Knowledge is power and that power will instil in you a confidence to navigate the health system, all those in it and walk away from appointments with a sense of control. I know you feel far from that now but you will get there. :ghug:

I also know that you feel that at any moment you will drop your bundle but you won’t. That’s not to say that you won’t cry in the shower or in bed under the cover of darkness, which is just fine by the way, but when it counts you will be strong for your lass and carry on through thick and thin. :hang: Mum! :heart:

Oh yeah, and waiting is the pits! :yfrown:

Dusty. xxx

 

[Poached Pear]

Hi,
So the colonoscopy went well. The prep wasn't as bad as I thought it would be. It was just a little slow in getting started. Next time she will drink more than 10oz (300 ml) an hour.
It was 3 am by the time she was done!

The results were great. No inflammation. Her fecal cal protection is a bit elevated (so maybe some activity in small intestine?) still, this was good news.

I cannot tell you all how grateful I am for your support. It is helpful for me to stop wallowing - this is not what you want for your darling daughter (or son), but you whipped me into shape, you really did. In a nice way. Thank you all!!

 

[CarolinAlaska]

I'm glad to hear it went well. Sorry you had to stay up so late! Will they be doing any further testing?

 

[Poached Pear]

MRE in 6 months. Her fecal calprotectin was 126 -- so a bit up. I think we'll probably get another one soon. I don't want to look for trouble.. she had an MRE 6 months ago after the surgery (about 6 weeks later). It was OK -- they said "normal"
She has been watching sugar and mostly vegetarian (we are all, occasional hamburger once every 6 months) I have no idea if this helps but she was told by MD to cut sugar, cut maltodextrin and polysorbate 80
I am now going to see how Jae is doing today. Thank you for keeping up with me.

 

[CarolinAlaska]

You might want to ask about maintenance medication. That lingering inflammation has long-term effects.

 

[crohnsinct]

When we are strict vegetarian with limited sugar and dairy we see a big difference in our girls. In the whole family actually. But we do veer off from time to time and that is when things go south for us. Of course my girls are still on meds also but we do diet to support the meds.

What lab did you have the tests drawn at and what is their upper limit of normal? When was her last FC test? Any plans to pull another before the 6 month MRE? Some labs upper limit for the over 10 year old population is 50 so I would want to at least get another test in say 8 weeks to see how she was trending.

 

[Poached Pear]

Likely that she will land up on some sort of maintenance medication- but will hold off for as long as possible. Side effects from those too. Will get another fecal cal protectin after mid may probably. Trying not have disease affect graduation from HS. I think she has had inflammation for years . By the looks of the 10cm that was removed - this was not new. And this is defining of the diagnosis anyway, there has to be acute and chronic inflammation in the tissue.

Trying to move on to planning for college. Don't know about how best to plan. Right now every time she has a twinge she reports it to me. I can spend time looking at her and talking. When she is 1000 miles away more difficult. I am an RN by background. This has helped too. Learning curve was a bump. Coming to terms with diagnosis, not easy for anyone.

 

[Maya142]

It might be a good idea to start a maintenance med sooner rather than later so you can prevent this from happening again - especially if she's going to be 1000 miles away!
Side effects are a possibility from Crohn's medications but as you've seen, untreated Crohn's can be very dangerous. Maintenance meds also take anywhere from 6 weeks to 3-4 months to be effective - sometimes even longer, so the sooner you start, the sooner you can get her stable.

I'll tag my little penguin, she can give you some statistics about medications.