How to know if Humira is working for Crohns? Side effects like Folliculitis?

[jimlaman8]

Just some background for reference:

I'm 39, have had the runs to bathroom of about 2-5 times per day since i was about 22 (not well defined in size but not diarrhea either, mostly in the morning hours).. I was always told that i basically had ibs (not crohns).. These have been my only symptoms through the years (no stomach or abdomen pain etc)

2014.. got another colonoscopy, images showed crohns.. mostly at end of large intestine and more so in small intestine..

So nov 2014 after trying various pill drugs.. they decided to put me on Humira 40 every 2 weeks. (this is the only thing i'm on)

Flash forward 5 months to today 4/2015.. since about month one i started developing mollescum and Folliculitis on my legs and buttocks.. I was pretty convinced it was from the humira, as i'd never had this before..

Doctors said to get a colonoscopy to see if the humira had at least been working internally (runs to bathroom have not changed, still 2-3 at least per day)..

This has now been performed.

Results show that there is less showing in the small intestine, though it "was hard to get into that area".. nothing in the large.. doctor has ordered a cat scan for small intestine.. told me to continue the humira and "deal with the Folliculitis separately"

The pimples on the legs/buttocks turn into bigger than quarter sized red areas, often infected in the middle and tend to leave a scar behind.


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So my questions are.. how do you know if humira is working.. is it in frequency of bathroom movements or is the doctor on the right track by saying since the images show improvement it must be working ? (or a coincidence)

Has anyone had Folliculitis with humira.. is it this or the crohns (doc says its the crohns, compared to the first doc at the same practice that said it was the crohns.. confusion).

On the bathroom movements, he said its not from crohns, but ibs in general, like diet etc (i know there are many with crohns that have it much worse, like 20 times a day, but i was really hoping to get to once or twice again).

My diet according to the dietitian is pretty solid and i have no signs of celiac disease or similar.

I do get tired on a daily basis, feeling drained.. its my understanding its the humira (worse than before i started).. wondering if there are any quick fixes..

Any thoughts out there?

Thanks in advance

 

[JackG]

Jim--thanks for posting. It reminds us Crohn's is sometimes a bother, and sometimes a tiger, as my first gastro doc described it. Briefly, my history involves emergency surgery with an abscess, a later reconnect, and then almost 30 years on azulfadine and eventually Pentasa.

A while back I had a couple of strictures at the same site within a couple of years, and it was determined I should probably take the next step to Humira. I've been okay for two and a half years now, but it gave me annoying and very determined skin problems. Evidently that's common. I went through a dozen skin products and finally a dermatologist gave me a non steroid anti inflammatory that helps.

You know it's working by it not getting worse, and by being able to go about your day to day life. About your trips to the bathroom, here's what I do: avoid all dairy and especially ice cream, and see if it helps. Coffee is now bothering me (but not Pepsi (??)) so I stay away from that. In other words find out what aggravates your system and avoid it.

The BIGGEST help I've found in the last decade is VSL #3 probiotics. There are more potent sizes, but I get their capsules and take one a day. You can take two if you want, or even more. One or two helps me feel a lot better. You figure your gut is your battleground, why not help it if you can? Google it, or ask a pharmacy to order it. It's on the order of 10 to 20 times more powerful than over the counter products.

Metamucil and especially Pepto Bismol help calm me down big time, and their generics work just as good, at least for me. You'll find your own triggers and your own help.

Jim, you'll never be normal, but you'll get wiser as time goes by. I lead a pretty normal life, still working and even golfing tomorrow morning. I've had Crohns for a long time and I'll try and answer any questions I can. This looks like a great forum with lots of friendly people in similar circumstances.

Looks like we've come to the right place.

 

[jimlaman8]

Jim--thanks for posting. It reminds us Crohn's is sometimes a bother, and sometimes a tiger, as my first gastro doc described it. Briefly, my history involves emergency surgery with an abscess, a later reconnect, and then almost 30 years on azulfadine and eventually Pentasa.

Thanks for the reply.. much appreciated.

I also started with a perennial abscess, which was plugged by a seton (last year).. but it still drains.. just had the seton removed.. dr said it wont matter with it in or without it, it will still drain.. he also feels no degree of biologics will cure it, maybe initially, but the fistula will still exist and open back up.

At one point I tried Theralac, which as 560 billion CFU.. tried one capsule daily over 2 weeks, at least bathroom trips wise, no change.. i will give the one you suggested a try though.. though it appears the one you suggested is 120 billion, but perhaps a varying type might do the trick. I did find it on amazon for $59 for 60, although the title lists it for "Ulcerative colitis" .

As far as how to tell if working.. the problem i have, is, aside from the abscess/fistula.. i never really had anything bad except the frequency of trips, 2-4 per day (sometimes 5).. so for me, there is no change, though the doc says the small intestine looks improved.

Its strange, but in 2009 they did a colonoscopy, missing signs of crohns then.. you could see it in the images (very slight).. and prior to that, going back to 1998 is when i've had bathroom trip symptoms at least.

Doc still insists (the other doc) that the frequency of trips is just the diet (as you mentioned).. something to try to tweak though i swear i have tried it all.

Right now i'm trying no wheat.. for 2 weeks to see what happens.. i'm pretty sure i've tried no dairy in the past with no change as well.

My goal through all this was to be able to reduce those trips, thereby opening up activities like getting my pilots license, which till now has been strictly a pipe dream due to the frequency.

Aside from that, my day to life still remains pretty normal, with the nuisance of trips to the bathoom.. play sports, ski (often all day without issue once i hit a trip or two first) go on trips etc. The trips to the bathroom usually subside after the morning hours.