Proctofoam long term?

[crohnsinct]

My 20 yo daughter has been flaring for about 4.5 years. We have tried quite a few therapies. She has Crohn's in her TI and colon. We got the TI and most of colon under control but the sigmoid and rectum are the problem areas (always have been). She has severe disease there. Her current therapy is 600mg Entyvio Q4, Humira 40mg every 2 weeks, Entocort 9mg daily (since October), and SCD. She previous failed Remicade, Tacrolimus, vancomycin, triple antibiotic therapy.

She had a colonoscopy last Tuesday and is now possibly facing the decision to remove the sigmoid colon and have a diversion. Her GI set up the surgical consult but also prescribed proctofoam. She has used rectal therapies in the past. Sometimes they work, sometimes not. This one seems to be working pretty o.k.. Does anyone know if this is a long term option for rectal Crohn's? I know it is a steroid and technically topical so only treats the top layer but wondering if anyone out there has used it long term. She is using it twice daily.

 

[Lady Organic]

Hi crohnsinct,
I'm sorry to hear about your daughter ongoing struggles. I try to remember correctly this question I already asked my GI about using cortisone rectal therapy for the long term, if this was possible or if this would be detrimental to the colon. To my best recollection, I think the answer was that it was possible to use it long term. However, in my experience, it never worked long term. It worked maybe for a month or three at the very most. Just as oral steroids, rectal therapy is a bridge and not a maintenance therapy. This has always been true to my experience. At one point, we need more for the same effect (increase to twice a day instead of once) or it just doesnt work anymore. So your daughter is already at maximum dosage. Hopefully she can benefit from it as long as possible or this bridge to be as long as possible. Also, we can never rule out the possibility of a very good response from any treatment, the kick the cortisone could give along to other treatments and/or spontaneous remission either. Crossing fingers here

 

[crohnsinct]

Hmmm all these years and I never knew that the effect you get from steroids wanes over time. Although now that you mention it, I do remember the GI saying something about each subsequent use of steroids not working as well as the previous. So makes sense.

Maybe you are right and this extra kick the proctofoam gives the distal colon will help Humira and Entyvio take over. At the very least maybe the proctofoam will give us some breathing room and schedule surgery for December so she can go back to college in August.

 

[Lady Organic]

Oh yeah, definately and unfortunately. For oral prednisone, in my first years of disease, 30mg would put me in remission. For the same disease activity, years later, it had to be upped to 40 and even 50mg twice. And now even at this dosage, it takes more time for it to kick in and for me to reach remission. A resistance can build up with this type of medication. It seems the protocols with oral pred has a wider range of dosages accepted than for rectal therapy. For rectal cortisone, treatment more than twice a day has never been indicated to me. A lack of research data concluding on the safety for higher dosages or lack of research interest for this treatment I guess? Cortisone rectal treatment is fairly recent, thus a lot of unknown remains regarding its use I can imagine. When I was diagnosed in 2001, it was not on the market yet. It came up in the years 2010 or so, to our great benefits.

 

[Mountaineer01]

During my last flare, I was given proctofoam along with hydrocortisone enemas. The best I remember, I was told to use both for 28 days, which was a challenge for me.

If she's been on Entocort continually since October, that's too long and she should be weaned off. I was on Entocort for a few months and started to experience the effects of being on corticosteroids for too long. It started with excessive thirst and sweating and proceeded to being overly aggressive, which is not my nature.

How long has she been on Humira? Luckily, it's been effective for me, though it took it a few months before I started seeing a difference.

 

[Lady Organic]

How is your daughter doing? Any help with the proctofoam? I hope she got some relief.

 

[crohnsinct]

She is pretty ok. Not great but not awful. We think it is a combo of the foam and antibiotics that are helping. Every time she misses a night of foam the next day or two are awful.

Been in Humira since May so thinking maybe it is kicking in. Just reduced Entyvio to 300mg Q4. Still in 9 mg daily if Entocort. Last cal pro was almost 1600 three weeks ago. Gets another one next Tuesday with infusion. Hoping it has come down some

 

[Lady Organic]

Ok well hang on! Im hoping better results are coming