Remicade and strictures

[73monte]

I posted previously about my Daughter starting Remicade in about a month.
I'm looking for any imput from anyone who started Remicade with a stricture. Particularly in the TI.
Our GI mentioned that the current stricture, (15cms long), could become worse once Remicade is started.
Right now our GI is hoping that the stricture is mostly inflammation. I'm holding out for that two, but it sounds like wishful thinking.
Anyone have a similar situation?

Tom.

 

[Tesscorm]

Sorry I have no advice, I'm in a similar situation. My son has had two infusions, 3rd tomorrow... MREs showed some narrowing and I am a bit concerned at the possibility of remicade causing scarring.

Our GI was not overly concerned though???

My son's prior treatment has been Enteral Nutrition only, was used exclusively (no food) to induce remission and since then (July 2011), it has been his maintenance. EN is know to have some healing properties and studies do show the potential for some mucosal healing. For now, he is staying on the EN along with the remicade. I expect this is a David and Goliath situation but I'm hoping the EN can help alleviate scarring a bit??? You may want to look into this but I believe the benefit may be small for the effort that would be required to initiate EN??? But, if you have any questions, feel free to ask...

Good luck!

 

[73monte]

Hi Tess,

Thanks for replying. Your son's situation certainly does sound similar. Is he having another MRE in a few months to see what the status of his narrowing is?

Being on EN must be difficult. Has he noticed any difference since starting Remicade?

Tom.

 

[Tesscorm]

Hi Tom,

We have our next follow-up apptmt (first since starting remicade) on Monday. I will be asking how we will be testing for remicade's efficacy.

My son had no apparent symptoms before going on remicade so we haven't seen any difference (good or bad). In addition, his CRP was within normal range, although his ESR was slightly high. It was only the MRE that showed the inflammation in his ileum. So, I am going to request an MRE for June/July. By that time, he will have been on remicade since February. I don't want to wait until later because he'll be going away to university in September and, if remi is not working, I want to have enough time to change meds and have any problems resolved. I'll update what the GI has to say on Monday.

As far as EN, the exclusive period (initial six weeks) when he was allowed the formula ONLY was difficult but he responded really, really well!!! It was a great treatment for him. After the six weeks (July 2011), his only maintenance has been the same formula at 1/2 dose, 5 nights per week (he has the formula through NG tube overnight) with a regular diet. So far, it has controlled the crohns, however, wasn't enough to eliminate all inflammation. Hence, the GI's concern re the ongoing inflammation. For now, I'm going to start tapering down his EN, ie 4 nights per week, then less formula, etc. between now and the summer (his plan is to stop the EN at university and just supplement with Boost or Ensure shakes). Similar to why I want the MRE soon, if the EN is helping to maintain his remission (even with the remicade), I don't want to find out when he's away at school that cutting out the EN is causing a problem.

For nutritional benefits, EN is wonderful. You don't mention if you daughter is underweight, etc. but, while Stephen is using an unpalatable formula (reason for NG tube), there are formulas that are drinkable such as Boost, ensure, etc. The formula Stephen was given initially is very easily absorbed (Tolerex) but the process that makes it so easily absorbed also makes it unpalatable. Sorry I can't be more precise, it has to do with how the proteins are broken down. Just something to keep in mind if your daughter is flaring and having a hard time getting all her nutrition.

Hope that helps!

 

[73monte]

Tess,

Our plan is very similar. My Daughter, (Holly), had to get the Hep B vaccine done first before starting Remicade, so she won't be starting for about a month.
After 3 months, she will likely be getting another MRE. As far as her weight goes, she is thin, but not painfully so.
She will have the Summer to adjust, but we're in the same boat as far as school goes, as she's back to College in September.
We were offered EN once, when Holly suffered a huge flare-up with and intestinal abcsess. She wouldn't even consider it, and I really doubt that she would go for it now either if warranted.
Good Luck with everything. Hopefully the Remicade is a Godsend.

Tom.

 

[Tesscorm]

Hi Tom,

Just updating after yesterday's apptmt and follow up tests. Stephen's GI will be arranging for another MRE in August (6 months after starting remicade), he will be testing remicade levels before next infusion (to determine if there is any need to adjust scheduling) and would like to do another scope in a few months. He's not in a big rush for the scope, would like to wait a few months to see how Stephen is doing and what his school schedule is like and then we'll schedule the scope (I'm guessing it'll end up being approx one year from his last one - he had one in January 2013, before beginning remicade). Also, typical blood tests at every infusion.

I didn't ask about strictures - GI won't have a definitive answer anyway and, now that he's already being treated with remicade, we'll have to deal with what comes... However, I did mention that I was going to begin to gradually reduce Stephen's EN as he was now being treated with remicade but the GI said he'd actually like Stephen to continue with the EN for a bit longer. Stephen's CRP has dropped since starting remi and the GI does believe it is the remi causing the drop but, he said the EN may be helping it so if there's no reason to stop, he'd like Stephen to continue for a bit longer...

Other than that, all was good and stable

All the best for Holly when she begins remicade! I hope all goes smoothly!!

If you have a chance, give us an update on how she does!

 

[73monte]

Hi agan Tess,

Glad to see that things are looking well for your son. It sounds like his follow-up schedule is very similar to ours.
My Daughter can't stand the thought of another scope. She's had two, and and last one in particular was of considerable discomfort. MRE's no problem, so I hope they are satisfied with just that, but like you, they will likely want another scope at some point.

Holly will be starting Remicade in about 2 weeks. I certainly do an update at that point.

Continued success for your son Stephen. I pray that they will both have bright futures.

Tom.

 

[Tesscorm]

Just a colonoscopy tip... my son's first scope was really, really difficult (although this was before diagnosis/treatment); for his recent scope, I put him on a low residue diet (lots on info if you google but not hard to follow) for a couple of days, then the day before prep, I kept him on mainly liquids - soup, Boost shakes (he did have a bit of chicken and bread) and then followed the prep instructions the next day... he found it very easy, very little discomfort, and quick clean out.

Good luck!!

 

[AlaneClair]

I am about to start Remicade. I was dx in 2006. Have been on several meds that work for awhile, but my Crohn's is flaring. I have a stricture in my ileum too and a a bit worried about the drug making it worse. I hope that the med decrease the inflammation. I have been lucky so far since I rarely have diarrhea. My problem is mostly pain during flares. My doc doesn't seem to concerned with the possibility of remicade making me worse.

 

[73monte]

Alane,

It's funny how most who mentioned this to there GI's said the same thing about the lack concern for stricturing getting worse.
I hope that Remicade works really well for you. My Daughter starts on Tuesday. The anxiety is starting to kick in abit. Are you taking an immunosuppressant with it?

Tom.

 

[AlaneClair]

Tom,
I think it's funny that the docs don't seem concerned either. Maybe they know this is the best option. I just hope I don't ever have to have surgery. I just want my stricture to stay the way it is, no blockages. I will be taking remicade alone. Hope it works. Alane

 

[amann]

14 yo son started Remicade w stricture. Remicade since Oct 2012. Improved in June 2013 when dosages maximized. Overall disease improved but not stricture (2nd colonoscopy, follow up Sonogram to image stricture). So was scarring and not inflammation. Prob needs removal because it he isn't doing well. Has had one round of bowel obstruction last March after eating some peanuts.