Our 4/11 report, IBDinourhome

[troydanielbecker]

our 4/11 report, IBDinourhome

Well, here I am. It's just been a few months since the end of our last episode of bloody poop, and here we are again. Although this seems to have been triggered by an accidental soy exposure, the last week we've remained in foul poop mode and not without blood, although just visible flecks and traces and no more bloogies lately.

Our doctor wants to

a) increase the sulfasalazine
b) start Imuran
c) hit the steroids

And of course I'm torn. I want to do whatever it takes for Isaac to be at his optimum health in his condition, but I also want to do the least drastic thing.

I can see there are two camps. Those who want to do what it takes to get to optimum health, and then figure out what it is that is doing the trick. And those like me who want to systematically try this and that so we know, eventually, just what is doing what.

I am still thinking, let's find the diet that's perfect for Isaac, but I am also becoming more comfortable with the reality many of you express about the severity of the condition and the elusivity of the perfect diet. Or perhaps the possibility that even the best diet isn't enough.

What becomes more and more obvious, is that many IBD patients have a path of their experience which shares a lot of commonalities with other patients. It is common enough that it exists everywhere, but all the various types/manifestations are uncommon enough that we often don't find someone who shares our exact situations... But there's the shock, the healing, the fervor, the coming to terms, the reality/re-shock, the limbo, the frutration underlying almost everything, the desperation, the anger, the isolation, the fright. And more--I can see that many experience these at various intensities at various stages of the IBD experience. We are beginners. Not fresh new beginners, but I keep getting to new levels of awareness and seeing myself and Isaac inyet another way where I identify with this or that that I've read from your posts or elsewhere. I can see that we are going through these stages and will continue to go through these stages indefinitely.

Anyway, your thoughts and ideas are as always welcome. I feel like the doctor is hasty to try all those things at once, but on the other hand, Isaac is due for an important growth spurt and we don't want him to miss that. On the other hand, it doesn't seem right that he's on Imuran or steroids during a growth spurt. On the other hand, we're not the expert that our doctor is. On the other hand, we don't want to just forego all our feelings/convictions about diet and health. On another hand, this might be the last time he's ever on steroids. On the other hand, this will be another couple months exposure to them before Isaac's third birthday. On the other hand, we want him to feel better and have better colon function, on the other hand, he doesn't seem that bad. On the other hand,--well, we ran out of hands a while back....

 

[AZMOM]

You sound like me - analysis paralysis. Okay, not really, but it is difficult.....

What we do all have in common is wanting to do the absolute best for our children and avoiding all the harm. Sigh......there are days I want the magic wand! You know - I think the fear of doing anything less than the best is probably something we have in common too.

You are clearly an intelligent, caring Dad and you'll decide the best path for Isaac and your family. As far as growth spurts on immune suppressants, I will tell you they are more than possible. I think when you can get the disease in remission, they children can absorb nutrients and even grow like weeds. Claire is at the 97th percentile for height and 70th percentile for weight. I wish I could tell you how many inches she's grown while on 6MP but I can't recall. The last almost 2 years have been a blur.

All that said, it IS very cyclical, isn't it? In our home, the Crohn's is rearing it's ugly head a bit. While I am every bit as concerned as the first time, the watchful waiting is easier this time. The documenting is easier this time. And my determination that she never be as ill as the first time is fierce. I don't want to give her any unnecessary meds but I will do all I can to give her the quality of life she deserves and if medication can help me do that, we will go down that road.

I'm doing all I can to take it one....day...at....a....time. Today, she had a great day and for that, I'm thankful!

This is a really long way of me saying HANG IN THERE, isn't it?

Hugs,

J.

 

[Dexky]

Awesome posts Troy and Julie!! Everything I've felt over the last year and a half w/o the words to express. Where I am now: after considering all those "other hands", we're right back to putting our faith in the GI. Even though he seems to be guessing too, at least his is the most educated guess.

 

[DMS]

Troy, you're Isaac is so cute - I read your blog last night.

You've basically said what all of us parents are going through. My son has been in remission for about a year and a half with LDN, SCD diet, and HBOT, but his fistula has never healed, and his CRP has never gone below 9, so the GI has recommended that we go on Imuran as well to lower the chronic inflammation and heal the fistula. GI personally doesn't feel the LDN is doing anything at this point - and his inflammatory markers are being maintained by HBOT. He's also only about 5'5" and if we decide to change up meds - now would be the time to hit the last growth spurt that he will probably have.

Decisions, decisions. . .

I am as pro diet / natural as they come - but I'm also realistic and have always said that if there's a way that he can get healthier we'll do it - in addition to the natural way.

One thing that I like to remember when I get overwhelmed with the decisions and making the right choices with (and I say with because he is 17 and has a lot of say in it now) is there are many new things in the development stage. Prochamyl stem cell therapy is one I'm alway watching - as well as a couple of drugs in stage 3 trials. (ones with less side affects).

Good luck with your decisions - Isaac is lucky to have you.

 

[DustyKat]

I can't add to the great testimony already given, everyone has expressed themselves so eloquently and they mirror my thoughts and feelings exactly on this very personal and difficult journey we all face.

I suppose what I have learn't over the years is to be flexible with your thinking and be open to new ideas and treatments, IBD is fluid and shifting. Be a sponge and soak up knowledge, ask questions and question answers. Everyone's experiences are different and that can lead to many detours along the way but the destination remains more than achievable. Unfortunately with my two children I didn't have the opportunity to consider alternatives, the disease hit hard and fast, but when it boils down to it you will know what is right for Isaac. There are no right or wrong answers just different ones. My focus since Sarah was diagnosed 5 years ago has been to be see each day, each week, each month, each year pass by with her in remission knowing that as time goes by treatments and knowledge improves. This is now my focus with Matt as well and I have already seen the changes in these things compared to 5 years ago.

Good luck Troy with the decisions you need to make and remember, you make decisions based on what you know and see at the time, it won't be a wrong one.

Looks like I added more than my two cents worth! :lol:

All the best, :hug:
Dusty

 

[troydanielbecker]

Thanks all!

 

[radchic]

Oh Troy,
I so know how you ar feeling and it was a few short weeks ago that I had to make that very decision. In the end, Lucas would not tolerate a prednisone taper, so we had to start Imuran. I struggled with this decision terribly. But in the end, I think I made the best decision for us.
My husband was diagnosed in 1994...6 months after we were married. When I think back to what they had back then to the choices we have now, it astonishes me. When I see the advances made, it makes me hopeful that my son can live a much healthier life than my husband did in the beginning, even if it is on some very scary drugs. You will make the best choice for you and your family, I am confident of that.