Soooo discouraged

[Mom2oneboy]

S continues to have lots of blood in his stool. Had our doctor's appt yesterday and we looked at his colonoscopy pics that were done on 2/22. The colon looked fine with the only issue being in his terminal ileum. The blood in his stool started on 3/18 and has continued daily. It's gradually gotten worse. We are having labs done today and once we get the results, make a decision on whether to do another scope to see where the blood is coming from.

I feel so bad for him. He has been poked and prodded and continues with EN and STILL not seeing the results we want. I could scream! I'm worried sick about what the next steps are. We discussed LDN again and I think he will give it to us....said he wanted to double check the recommended dosing. But I'm wondering if this will be enough. Is it time to consider a more aggressive approach? Will remission ever be our friend?

My head is spinning and I wonder if I have the strength to deal with this disease. It's 11am here and I'm still in my jammies feeling paralyzed with worry and dread. It's going to get better right?

 

[Twiggy930]

Oh Shelley I am so sorry to hear that S is still not improving. This is all so unfair for these kids. Wish I had some words of advice. All I can offer is company on this rotten journey. I am feeling the same dread today. Soon, it is going to get better soon.

How long does LDN take to work?

 

[imaboveitall]

Hey Shelley, I know all about the discouraged feeling, believe me.

I too am wondering from your description, from where the blood is originating as his colon is clean?

Maybe up the pred and add naltrexone, that's going to be V's plan if the current detour into tx the dysauto fails.

 

[Mom2oneboy]

T, from what I've read LDN timeframe can be different for everyone. Just like everything with crohn's...it's the waiting and waiting that is pure torture when it's your child's health at stake. Our little boys deserve to feel better. :ghug: Hugs to you my friend!

Julie, maybe the crohn's has moved to the colon now? S had to poop at the doctor's office and had the where with all not to flush so the Dr. was able to look at it. He said he's certain it's coming from the lower area. It's very fresh looking. When he was on the 40mg of pred for a week, the bleeding still never stopped. We go to 10mg tomorrow. He really needs to come off of it due to his already high eye pressure.

Wondering what the blood results are going to show. What are the obvious physical signs of anemia besides looking pale?

 

[izzi'smom]

We did EN concurrently with Remi...the Remi didn't help but the EN was enough to help stop her weight loss and get her back on track to eat without vomiting.
I am sorry things are not going well for you...it can be so defeating. (((HUGS)))
It *is* going to get better-lots of parents on here to prove it-and you can DO this...it is SO exhausting to be the mom but you are doing a great job!!

 

[Tesscorm]

Shelley, I'm sorry you aren't seeing better results yet and I understand your fear and concern. As the doctor said that a lower area may be the cause of the bleeding, that may tie in with what Stephen's nurse told us - that the intestinal systems heals from the top to bottom.

Fatigue and dark circles under eyes can also indicate anemia.

Does the doctor believe the EN is helping at all? I know he's getting bowel rest and nutrition but heartbreaking that he's making the sacrifices and just isn't seeing the results yet. I hope you get some answers from the results quickly!

Try not to let yourself be overwhelmed (I know, not so easy to do... :ghug. As Angie said, lots of parents can attest that things will get better for Stefan.

 

[imaboveitall]

Crap, Shelley. That does sound like colonic involvement. And 40mg pred didn't help...hmm. They will want to use stronger drugs, likely. And he may need them after all. I'd continue formula as adjunct, but you knew I'd say that. :wink:

Bleeding would freak me out for sure. It'd make me absolutely nuts. I'd be watching every BM.
I'll be interested to hear how it goes with naltrexone if the doc gives it to him.

HUGS, soul sister :kiss:

 

[Jenn]

Sorry to hear, hope you get it figured out soon. It takes time to tap the vast stores of new strength you have!!!

 

[dannysmom]

Oh Shelley I am sorry to hear this. It was good the doctor was able to see the bm. I hope S gets some effective help soon!!

 

[Dexky]

Our doctor is an adamant top-downer but I certainly don't blame anyone for a different approach. They're all just guessing anyway! Good luck Shelley!

 

[LittlebitsMommy]

I know how it feels to be totally discouraged. So dont feel alone. You and your little one will be in my thoughts and prayers. Hugs to you both

 

[imaboveitall]

Ha, Dexky...you hit it, they're all just guessing...so true.
That's now in my top five favorite quotes from reading here, along with "the doctor handed me a bunch of scripts and said, here ya go, the cure is as bad as the disease".

 

[DustyKat]

Hey Shelley,

I'm so sorry to hear that S is going through all this! Ugh! Poor love...:hug:

Since the TI lays next to the sigmoid colon it is not unusual to have inflammation in the TI affect that area of the large bowel. I wonder if this is what is happening to S, it may account for the fresh appearance of the blood??

Good luck with the results! Perhaps if they indicate a scope is required it might make the waters a little less muddy when it comes time to deciding which treatment path to go down. :hug:

Dusty. xxx