Colonoscopy/LDN

[Livilou]

So everything went well with Olivia's scopes today-tolerated procedures well and prep quality was excellent. I did have fingers and toes crossed, and was hoping to hear that scope was negative for active disease, BUT, (they keep messing with my "happy bubble!) colonoscopy did show "some" inflammation at the terminal ileum/resection site. GI explained that the resected tissue never looks normal-even in the absence of inflammation. Liv's tissue looked like bright pink chop meat..of course the photos had some pics of normal, healthy bowel tissue to compare to Liv's, which made it look worse. Now, on a positive note, GI said he did not see any active, bleeding or pussy lesions...when I compared pics of her scope from Dec.2011 (pre-LDN) that was the one difference I noticed. Previous scope had pink inflamed mucosal tissue with white scattered patches(areas of pus...indicating white blood cell activity) and red excoriated areas (bleeding lesions). GI was straight-forward with me...yes, there is inflammation, but we will wait until biopsy results are back (next week) to make a final decision about how we will treat Liv. For now, he wants to continue with 6mg of Entocort and 4.5 mg of LDN. I'm not really sure what he is thinking...his exact words were "Yes, there is inflammation, but it's not horrible." Of course, biopsy results will show positive CD activity...based on that, we are probably looking at methotrexate.
Arrrgh!! I want to keep my head in that sandpit you girls always speak of!!!
GI did also recommend that we schedule a pill-cam study. Previous GI was too nervous to ever attempt one because of her history of stricturing disease.
Also, the endoscopy showed a hiatal hernia....Liv has no symptoms/reflux, so they told me not to worry about it.
Just wanted to update everyone...thanks for listening!!! Kim

 

[my little penguin]

Thanks for the update
Hugs
We did Mtx but only for 8 weeks so not much help there.
No real side effects but it was a shot .
Hope you find relief quickly.

 

[NMMom]

I'm sorry the tests didn't turn out as good as you had hoped. What makes this disease so hard for me is that there is no 'one size fits all' treatment and that the journey to remission is so different for everyone. I hope your sweet girl is feeling okay! Good vibes your way on biopsy results!

 

[DustyKat]

Thanks for the update Livilou...:hug:

Good luck with the biopsy results hun...:goodluck:...it's such an awful and heartbreaking time having to make these decisions for our precious ones.

Dusty. xxx

 

[Sascot]

Sorry to hear the colonoscopy wasn't quite what you hoped, but at least it was alot better than it used to be. Hope the biopsy results come back ok so you don't have to take you head out of the sand!

 

[Farmwife]

Sorry to hear about the inflammation.
I also love my HAPPY BUBBLE but others keep popping it!:voodoo:

 

[Tesscorm]

I'm sorry the colonoscopy results were 'mixed'. It's always so hard to find the strength again when the results aren't what we'd like! :ghug:

I don't recall... but has Olivia tried EN? Perhaps she could try EN while staying on LDN and entocort to try to induce remission/reduce the inflammation. EN formulas have anti-inflammatory and healing properties and, as she has improved since December, maybe EN would be the last boost she needs to move into remission. My understanding is that EN has the greatest success when it is initially used 'exclusively' (no food) for a time period (usually around 6 weeks) and then can be used as a maintenance/supplement treatment. I know there are a number of kids here using EN as a maintenance treatment (my son included) but all that come to mind began EN exclusively.

Re the pillcam - this always makes me a bit nervous... be sure they use a (dissolvable) dummy pillcam first, I've read of two or three members here whose pillcam got stuck and then required surgery! Probably happens rarely but why take the chance when the 'dummy' is available.

Good luck next week with the biopsy results! Keep up posted!! :ghug:

(And... always lots of friends in that sandpile! )

 

[crohnsinct]

Aw Kim I am so sorry to hear about the continued inflammation. Sounds like the doc isn't ready to throw in the towel yet. I will pray that the biopsy results are encouraging. Don't count tough Lon Gisland girls down for the count yet!!!!!

 

[kimmidwife]

Kim,
I agree with Tess about trying the EN first. Also I know she has been on transdermal LDN like we discussed. What about switching to the by mouth route ands maybe also doing the EN to give her a boost to get her into remission.

 

[Tesscorm]

Hi Livilou,

How is Olivia doing? How were the biopsy results?

I hope she's doing well and you are able to avoid adding more meds!

:ghug:

 

[Kev]

I would like to echo Kimmidwife (why can't everybody use short, 3 letter names that are easier to spell/remember?) sentiment about switching from transdermal to oral LDN. The scope shows lots of pink, healthy tissue... just some inflammation at the resection site. It would leave me to believe that absorption wouldn't be a problem. Just a thought. Okay? One last item, not sure if it is pertinent or not. Surgical scar tissue can behave strange. After my last operation, the surgeon said I was cured. The follow up scope seemed to suggest he was right. No sign of the disease at all. Three months later, all of it was engulfed, EXCEPT for the surgical scar. It was healthy, completely untouched. I'm not sure if there is a correlation or not. And, on the other hand, it just might mean all Olivia needs is a little more time for the rest to heal. A totally clean scope would have been glorious, but from what you describe, what you did see wasn't so bad either.

 

[Jmrogers4]

I was not aware you could do LDN transdermal must have missed that one, Jack takes it orally at night, we did not do EN with it when we started but we did adjust his diet and cut out all starch, sugar, dairy and processed foods for a few weeks - I think EN might have been easier but it certainly seemed to help when he started to flare after the first couple of weeks. We are on week 13 now and had a check up with the GI today and all is looking good, will do a colonoscopy after June to "check up" on things inside.
Hope the biopsies are encouraging and this is just a bump in the road.

 

[Livilou]

Hi Everyone! Thanks so much for checking up on my Liv, you guys are the best! Well, we finally switched to LDN capsules, about a month ago. So far, so good! She seems to be tolerating the capsules well. She is looking good, maintaining her weight ( she does drink 1-2 Ensure shakes/day) and so far not missing any school days (knock on wood!!). The GI doctor is holding off on the pill-cam study for now, and has instead decided to do an MRE of the pelvis and abdomen-she is scheduled for October 30th. GI is hesitant to discontinue the steroid, although I did convince him to lower her dose. She is taking 3mg of Entocort...it will be a year on Entocort in November. I am not happy about this long-term steroid use, but if MRE results are benign, I am going to insist we trial her off again. The last time we stopped the steroid, she lasted 3 weeks and than started again with rectal bleeding. At that time she was still on TD LDN; I am hoping she will do better with the oral form. GI also agreed to do a bone study in the near future since she has been on steroids for so long. Of course the biopsy results showed active CD, but GI did feel this scope was a bit improved from the last..hoping it is because the LDN still needs more time to kick in. So at the moment we are holding off on other meds..GI wanted the MRE done early Oct., but I pushed it to late Oct. in order to give her more time on the oral LDN. I'm not sure if it will be enough time, but I am hoping and praying! I am honestly terrified of the possible outcomes of long-term inflammation, even if it is minimal. Liv is still taking some supplements as well-Curcumin, Boswellia and L-glutamine. Not sure if they are helping, but she tolerates them fine, so I will continue with them (I used the dosing from Crohnsdad website). Also, my son has started taking LDN as well....he is still getting Remicade infusions, but has been having some breakthrough symptoms -sometimes as early as 3-4 weeks before his next infusion. He is scheduled for a scope in early-mid December, so we shall see....BTW, have the results of Jill Smith's pediatric LDN study been published? I haven't been able to find anything on the internet, and I have my GI keeping an eye out as well! Kim

 

[Jmrogers4]

Our GI is looking for them as well I think he was going to try contacting Dr. Smith about it will let you know if I find out anything. Hope LDN is working its magic by scope time

 

[kimmidwife]

Hi Kim
I am glad to hear she is doing well. I will keep my fingers crossed for her that the LDN has time to work its magic before the MRE.