My Treatment Options - Advice Please!

[LeafCrAzY]

Hello,

So I'm a newly diagnosed Crohnie. I was diagnosed in August.

Quick Summary: Went to ER with abdominal pain, after CAT Scan it was revealed it was a bowel obstruction. Had a Colonoscopy in which I was diagnosed with Minor to Moderate Crohns. I had minor inflammation in my large bowel and from what my Doctor could access, moderate inflammation in my Ileum. I also seemed to have some type of deformity (I'm guessing because of damage) to my Ileum.

After being Diagnosed I did blood tests to see what my ESR & CRP were.
They started at 60, and in the two blood tests since they have been 10, and 7.

Prescription: 9MG of Budesonide.

My symptoms: I barely have any (Thankfully, knock on wood) except for a couple of bowel blockages I've had over the last few years (I didn't know what they were and had no idea they were triggered by certain foods).

So here is where I need advice

I'm currently scheduled to have an MRI to check out my inflammation levels via the imaging as apparently blood tests aren't always accurate. I asked my Doctor about the future and the treatments I will need based on the findings of the results. The Doctor said that if I show Inflammation in the imaging (Which I was told is likely based on their experience of similar cases) they will recommend I go on a combination of Imuran (azathioprine) and Reimicade or just Imuran. If the Imaging shows very little information I will be weened to 3 MG of Budesonide.

To me, going on both Imuran and Remicade seems excessive. Even going on just Imuran seems excessive to me. I dont have any symptoms. The Doctor said it was a "Preventative Measure" but I still think suppressing your entire immune system is a bit over kill.

What I Think I should Do

I think I'm going to get a second opinion, but I'm looking for more experienced Crohnies on here to give me some opinions on the plan of action they think I should take.

Thank you for reading

 

[ronroush7]

Welcome. What did they do for your blockage or blockages? I have been on imuran and Remicade at the same time.

 

[LeafCrAzY]

Welcome. What did they do for your blockage or blockages? I have been on imuran and Remicade at the same time.

I only went to the ER for one blockage.

I was put on morphine and basically waited it out.

 

[ronroush7]

It must have been a minor blockage because I had to have a resection.

 

[Robrich]

Leaf crazy is the ESR or CRP 10/7. Those are good numbers for ESR but not good for CRP. If it's the ESR then I think you are right that Remicade is overkill at this point.
If those are CRP numbers and the imaging shows inflammation then you need more meds like Imuran. Since your disease is relatively mild to moderate at this point I would go with the bottom up approach with the meds, I.e. Go slow and conservative rather than top down Remicade and Imuran which should be saved for more serious disease. You usually only get one good bite at the biologics like Remicade and they don't work forever.
If the budesonide works I would stick with that and save the other meds if things worsen in the future. Also don't neglect diet and lifestyle to help keep it under control.

 

[LeafCrAzY]

Leaf crazy is the ESR or CRP 10/7. Those are good numbers for ESR but not good for CRP. If it's the ESR then I think you are right that Remicade is overkill at this point.
If those are CRP numbers and the imaging shows inflammation then you need more meds like Imuran. Since your disease is relatively mild to moderate at this point I would go with the bottom up approach with the meds, I.e. Go slow and conservative rather than top down Remicade and Imuran which should be saved for more serious disease. You usually only get one good bite at the biologics like Remicade and they don't work forever.
If the budesonide works I would stick with that and save the other meds if things worsen in the future. Also don't neglect diet and lifestyle to help keep it under control.

I know the doctor said my numbers went from 60 - 10 - 7 and that it was "good news" so I'm assuming the CRP was also good. I cant remember the exact number for that.

That's what I also thought... that it was overkill. So you agree, that I should seek out a second opinion?

Another thing to note is that on the CAT Scan is that it showed scarring, but it might have just been the inflammation too.

 

[LeafCrAzY]

It must have been a minor blockage because I had to have a resection.

I'm not sure Ron! I'm too new to all this!

 

[Robrich]

That's what I also thought... that it was overkill. So you agree, that I should seek out a second opinion?

I think we all have to have a meeting of the minds with our doc. If they don't want to listen to your concerns and think they have the only answer it's time to seek out other opinions.
There's often no right or wrong on many of these choices. You try it and if it works great. You can always try Remicade later on.

 

[Layla]

On the other hand if you're already having blockages you may need biologics to keep it from getting worse. I wasn't on medication for many years because I was thought to have IBS and UC rather than CD and I had to have a resection due to the build up of scar tissue.
I did have quite few obstructions over many years before it got to that but all the same, if you can prevent it....
I would wait for the MRI results and if they show inflammation think very carefully what you might do. If you decide to go bottom up then make sure you are being monitored properly so that if inflammation persists you can change up to biologics before it's too late. (and hope they work for you because that's not a given either!)

Good luck whatever you decide.

 

[ronroush7]

On the other hand if you're already having blockages you may need biologics to keep it from getting worse. I wasn't on medication for many years because I was thought to have IBS and UC rather than CD and I had to have a resection due to the build up of scar tissue.
I did have quite few obstructions over many years before it got to that but all the same, if you can prevent it....
I would wait for the MRI results and if they show inflammation think very carefully what you might do. If you decide to go bottom up then make sure you are being monitored properly so that if inflammation persists you can change up to biologics before it's too late. (and hope they work for you because that's not a given either!)

Good luck whatever you decide.

My surgeon told me that my situation had been building up for a while.

 

[Clash]

Outward symptoms aren't always a good indicator for what's going on inside and the GI is right blood work doesn't always tell the tale.

It sounds like your doc is deciding the treatment protocol by what is shown in the small bowel by MRI.

There are two protocols. For a long time GIs followed a step up approach as each med failed you would step up to the next level. The issue with this is that if the meds are failing then long term damage can be more prevalent.

The other approach is top down. The reason more GIs have adopted this approach is because hitting the disease with the big guns has cut down on the surgeries if it is done early in the disease process. It's often the preferred method in those who have obstructions since obstruction can be due to stricturing CD. Stricturing and fistulizing CD are more severe and can require surgery. The treatment goal with those that have these forms of CD is to catch the disease before it reaches that stage to cut down on the need for surgeries.

He may be looking at the thickening of the bowel with the MRI to determine if stricturing is present and what the level of stricturing is. With or without symptoms stricturing disease often requires the big guns.

 

[LeafCrAzY]

Outward symptoms aren't always a good indicator for what's going on inside and the GI is right blood work doesn't always tell the tale.

It sounds like your doc is deciding the treatment protocol by what is shown in the small bowel by MRI.

There are two protocols. For a long time GIs followed a step up approach as each med failed you would step up to the next level. The issue with this is that if the meds are failing then long term damage can be more prevalent.

The other approach is top down. The reason more GIs have adopted this approach is because hitting the disease with the big guns has cut down on the surgeries if it is done early in the disease process. It's often the preferred method in those who have obstructions since obstruction can be due to stricturing CD. Stricturing and fistulizing CD are more severe and can require surgery. The treatment goal with those that have these forms of CD is to catch the disease before it reaches that stage to cut down on the need for surgeries.

He may be looking at the thickening of the bowel with the MRI to determine if stricturing is present and what the level of stricturing is. With or without symptoms stricturing disease often requires the big guns.

Ah, makes sense. What happens if you start from the top down and the meds eventually stop working?