Upper and Lower Scope Results

[greypup]

Today we rec'd the results from M's scopes last week.

The biopsies and review by the hospital GI team determined there is no inflammation and everything looks pretty well under control!

M also had a fecal cal test one month ago of which she was a 35.

Because M's initial presentation was so severe...obstruction, fistula, infecton, etc. the GI group is recommending that M start Imuran in order to manage the crohn's.

Currently she is on Apriso.

I am SO thankful there is no activity and I'm not super surprised of the drug recommendation b/c she was severe at diagnosis. However, I'm seeking advice on whether you agree? Do you think Imuran is necessary? Would anyone push back and ask to stay on Apriso only?

I have this weekend to come up with my questions for the GI doc.

 

[Crohn's gal since 1989]

My GI's plan for me was to reduce my inflammation with Prednisone & Imuran, then once the inflammation has settled I was going to Remicade with Imuran as a maintenance med. now this plan has been temporarily shelved as I await surgery for a stricture. After my surgery my GI plans to have me continue the Imuran for maintenance.

 

[DustyKat]

I can see it would be tempting to stick with the 5ASA but, there's always a but! ugh, it would be pretty normal practice that given the initial presentation a move straight to the immunosuppressives would be recommended due to your daughter falling into the high risk group for relapse.

Both of my children had severe Crohn's, have had surgery are now deemed high risk for relapse. They have both been on Imuran since their surgeries and have been in remission 7 years and 2.5 years respectively.

It's one helluva choice to have to make but in my own personal opinion I would likely go with the Imuran whilst all is good and in doing so try to maximise her chances of staying well and in remission for as long as I possibly could.

Dusty. xxx

 

[Sascot]

That's great news about the scopes. Really difficult one about the medication! At the beginning of our "journey" I would have said stay on the Apriso and wait and see, but after my son had all his issues with surgery/fistula/abscess, I do wonder if it might not have happened if we had started the 6mp sooner. If your daughter is doing well, then I would do anything to keep her there.

 

[Dexky]

I fully agree with Dusty and Sascot! And remember blood tests will be often at the beginning to make sure there's no negative side effects. Still, it's always a tough decision! Good luck!

 

[greypup]

I thought so...I understand the risks if we don't go that way but want to explore every last thought and question.

Also, is it standard for them to do blood tests before beginning the meds to make sure there isn't a marker for intolerance?

When are they going to cure this w/out meds that carry such serious effects???

 

[Tesscorm]

Uggh, hate these choices!!! There are some tests done before beginning immunosuppressants. S is on remicade and was tested for TB beforehand. I would also suggest having immunity levels checked (although this does not seem to be the norm). For reasons other than crohns, we recently found that Stephen does not have full immunity to mumps although he has had all the required vaccines. Had we known this before starting remicade, we would have had him immunized again... now we can't because it's a live vaccine.

 

[Crohn's gal since 1989]

I thought so...I understand the risks if we don't go that way but want to explore every last thought and question.

Also, is it standard for them to do blood tests before beginning the meds to make sure there isn't a marker for intolerance?

When are they going to cure this w/out meds that carry such serious effects???

Some people can have an allergic reaction to Imuran, so they do the initial blood test to test for that and get a base line for monitoring how therapeutic the dose is.

 

[DustyKat]

Although I do see on the forum that the test isn't always done they should however do what is called a TPMT test before commencing the thiopurines (Imuran/6MP). That is the test that will show if you have the enzyme, and in what amounts, required to break thiopurines down. It will give some degree of indication as to whether there is a likelihood of suffering the more severe side effects of the medication.

When my daughter was diagnosed the test wasn't available in Australia but she was able to take Imuran with no ill effects. When my son was diagnosed he had the test done and had the enzyme and he also has had no ill effects from the drug. I still wait for a cure everyday though! :ghug:

Thinking of you. :heart:
Dusty. xxx

 

[greypup]

So I will make sure the TPMT test is given first.

If she is due to have her wisdom teeth pulled this year, would you recommend doing it before starting Imuran? The oral surgeon said "yes" and the GI office said "doesn't matter."

I sway towards caution...what do you guys think?

 

[DustyKat]

I would likely err to caution too since she hasn't started it but bear in mind that Imuran will take at least 3 months to become fully therapeutic so there is time there too.

My kids haven't needed any dental work done since being on Imuran, Sarah did have braces, but no extractions or fillings have been needed. Matt did have his resection done whilst on the medication and he had no issues with infection or healing.

Dusty. xxx

 

[greypup]

Good to know!

 

[crohnsinct]

Glad to hear she is doing so well! I would certainly want answers from the docs as to why the switch to Imuran. If she was so severe at dx and the Apriso got her looking so good then why the request to switch? Isn't it working? Is it because as times goes on the efficacy wears off? Or were there other things prescribed that helped get her to this point (ie: steroids, EEN etc). But in the end I would defer to the docs.

My daughter is on Remicade and had two tooth extractions. THe only warning we got from the HI was to wait two weeks from the last infusion to do it.

 

[my little penguin]

Basically it comes down to -do you trust your docs.
They have been trained some for many years and see lots of patients a day.
They only prescribe the meds if in their eyes the benefits outweigh the risks of not giving the med at the time.
trust me when they dont think those benefits are no longer there for a particular med they will let you know that as well (btdt a few times unfortunately).

Basically- Imuran- has a better track record for keeping kids in remission with moderate to severe disease. drugs like apriso only have a 20% chance of maintaining remission IN MILD disease.

I wish you did have to make these decisions. but at the end of the day when you have a drug that works and keeps your child in remission for a long period of time -
things are very good.

FWIW surgery can induce remission but some have a hard time maintaining it without a stronger drug for longer periods of time.

 

[greypup]

Well, when M was diagnosed she was immediately hospitalized for an abscess, fistula and phlegmon. She had to go on IV zosyn, prednisone and TPN for weeks until she was ready for resection surgery b/c by then she had a stricture and had been readmitted to the hospital for total obstruction.

After the surgery, they started Apriso b/c of a fissure near her bottom. The GI team is afraid if they don't use a stronger immune suppressant that she may have complications again. Even with the Imuran they want to scope again in 4 months b/c they want to keep a close eye on her.

What bothers me most is there is no exit plan for these drugs. It sounds that once you start them, then you are committed, which I understand is necessary to stay out of harm's way.

My three kids (M and her 14 year old twin brothers) have been gluten free for nine years. My husband has celiac disease and they are gluten intolerant. My hope and prayer has been that gluten free will be mainstream by the time they are young adults so that it's not difficult. WOW! The changes in the gluten-free world over the past 10 years are amazing. The foods are better. Restaurants get it and traveling is not complicated, like it used to be. It's an amazing feeling to be grateful that this very big hope and prayer has been realized.

My new hope and prayer is that there will be a cure OR safer med therapy for crohn's/colitis in our lifetime - in our children's lifetime.

I have never complained about providing special foods and educating my kids on the gluten free lifestyle. They've navigated it so well. M is navigating this new diagnosis of crohn's. She missed the last half of her high school sophomore year. She had to wait until mid July to appreciate summertime. She had her first week of school this past week. She is so ready to take on her junior year. Somehow these kids have amazing resiliency.

I know the kids that we all meet here for deserve the best. I know they do.

 

[DustyKat]

Wow, greypup, your daughter's journey sounds similar to Matt's in so many ways. :ghug:

Although he did not have a fistula at diagnosis he very quickly developed one with an accompanying psoas abscess. When he had his surgery they found another fistula and phlegmon.

Dusty. xxx

 

[greypup]

Dusty,

I know. Every time I read your signature or follow your posts, I find a lot in common between Sarah, Matt and my daughter.

Also, I love that Sarah has figured out some of the better food choices. That has to make you feel so proud that she is taking this on and doing what's best for her. I know she's of the age to do that, but still...it's very cool.

 

[DustyKat]

Thank you for your kind words greypup.

I am very proud of Sarah and how she has handled things. When she left for university at 17 she was not in a good place psychologically and I had no idea which path she would end up on. Thankfully she chose the path of responsibility and good health and she never ceases to amaze me with how well she is doing. :thumleft:

Dusty. :heart:

 

[crohnsinct]

Ah! Sorry Greypup...didn't know your girl's history. Poor pumpkin! Well now the Imuran makes perfect sense since it wasn't the Apriso alone that helped get things to where they are now.

As for exit strategy... I hear ya! I didn't know that once you started Remicade it was a long term commitment...not that I mind it since it is working mind you...I just feel a bit trapped at times.

Junior year huh?! Good luck with the good ole college search! Praying she has a nice healthy year!