Newbie

Hello Everyone.

I'm a newbie to Crohn's and to this forum. I had my first colonoscopy three years ago when I turned 50, and was told I was asymptomatic for ileitis, because I didn't have abdominal pain or diarrhea.

Over the next few years, I went to a rheumatologist and then an orthopedist for excruciating joint pain (hips, lower back, knees). I learned that I did not have RA and that I had mild degenerative disc...which could explain the back pain only. Needless to say the PT didn't do much for me. I also started acupuncture, but that only helped for a few hours after each session.

This past spring, I started having abdominal pain. While not nearly as bad as the joint pain, I used it as an excuse to go back to the GI. He finally admitted that perhaps I was symptomatic for Crohn's, and was concerned I may have a stricture. He did another colonoscopy, and yes I was inflammed, but had no strictures, so he put me on endicort. He then did a EGD and confirmed that I have gastritis, hietal hernia and acid reflux, so he put me on prevacid.

My follow up showed no change in symptoms, so he did a capsule endoscopy. The result was "extensive Crohn's" with no narrowing and he is now planning to put me on "aggressive treatment" aka Humira. I'm waiting on the insurance company right now.

Of course, I'm overwhelmed and confused. I'd love some feedback...

- I understand that the goal is to get me into remission and to heal the inflammation to avoid future complications, but I'm not sure if this is the right next step. It's a huge commitment.

- I understand the Humira may help my significant "extraintestinal" issue, but wonder if there are other options

- I have suffered from severe constipation for as long as I can remember, and understand it will get even worse from the Humira. I'm already taking trulance and miralax, but am still experiencing issues. My GI doesn't want to revisit this until we pass the "Humira insurance hurdle"....although I don't think he really has a clue how to help me with this one.

- I wonder if there are any folks out there who have symptoms like mine. They seem so different from what I've seen.

- Dietary considerations are contradictory for Crohn's and constipation. Now add acid reflux to the mix. My GI said to eat what doesn't bother me. Any other thoughts?

I'd love some feedback. As you know, no one seems to get this and, quite frankly, I'm sick of feeling crummy.

Thank you,
Laura

Have you seen a rheumatologist since your Crohn's diagnosis? There is a type of inflammatory arthritis associated with IBD - Spondyloarthritis. It tends to affect the lower back (lumbar spine and SI joints) and hips. Both my daughters and my husband have it. There are several forms - peripheral SpA, where joints other than the spine are affected (knees, ankles, elbows etc.) and axial SpA, where the spine/SI joints are affected.

It is also sometimes called "Enteropathic arthritis" or IBD associated arthritis when the patient has IBD too.

A rheumatologist would make the diagnosis based on clinical exam, blood work (sometimes inflammatory markers are elevated - CRP for example - and sometimes they aren't), a gene test (HLA B27, though you can be HLA B27- and have SpA) and imaging (either x-rays or MRI).

CCFA has some good info about the various types of arthritis associated with IBD:
http://www.crohnscolitisfoundation.org/assets/pdfs/arthritiscomplications.pdf

Axial SpA is treated with biologics - drugs like Humira, Remicade, Simponi etc. My older daughter is actually on Humira and is doing great. If peripheral joints are involved, often Methotrexate or Sulfasalazine are also used.

Axial SpA does need to be treated because it can cause significant joint damage if it is not. My husband was diagnosed years and years ago (in his 20s) before biologics exists. The only treatment then was NSAIDs - Aleve at first, later Indocin.

He has had 5 hip replacements, has fully fused SI joints and a partially fused spine. That kind of damage is much rarer now, and I don't mean to scare you, but I just wanted to point out that treating the disease is VERY important (if you have it).

My girls were treated early and aggressively with biologics and have much less damage to their joints. My older one is doing great - living a normal life. My younger one has pretty severe AS (as well as Crohn's) which has been hard to control. She is still a work in progress, though I don't know where she'd be without biologics.

My girls were teenagers when we put them on biologics. We were terrified - agonized for months about it. It seemed so extreme. But honestly, after a while the disease became much scarier than the meds, and now, 8 years later, I can honestly say we have NEVER regretted it for a second.

Spondylitis.org also has good info about Spondyloarthritis.

I will tag my little penguin since she also has a kiddo with SpA.

Thanks so much for the feedback. I did consider that I may have spondyloarthritis and was thinking I should wait to see if the Humira helps it before going to a rheumatologist.

This has all happened very quickly...within the past two months. I guess I was thinking that if I go in a lot of directions at once it will be more stressful (did I mention I have anxiety issues) and may make my path more confusing. I'm also getting impatient with starting a treatment that may actually work.

I've already done the bloodwork and would likely start Humira before I could get into a rheumatologist. Do you think I should wait to start and schedule an appt?

I appreciate the personal insights. My cube buddy at work has supported his wife through her Crohn's and feels she's been much happier since on Humira too. Of course, he told me she had surgery for a fistual since then, and I guess I didn't realize you could have flares while on the med and not switch things up. So much to learn!

Yes, absolutely see a rheumatologist before Humira. Humira treats SpA, so it might be harder to diagnose if everything is under control.

My daughter's GI and rheumatologist work together to manage her Crohn's and SpA. It takes some coordination but it is not so bad.

The other option would be to just start the Humira and then see a rheumatologist. I say that because I was just thinking that it might take a long time to get in with a rheumatologist and you probably want to feel better as soon as possible.

The issue would be then that the Humira may be treating the joint inflammation, making a diagnosis more difficult. But hopefully, if you explain the symptoms you had prior to starting Humira, the rheumatologist will understand. It honestly depends on the doc - some rely wholly on blood work and imaging, and others are more flexible and go on clinical symptoms.

A good rheumatologist should take into account ALL of the above.

It's a choice - you could really go either way. If you want more assurance that you absolutely need the Humira for both some kind of inflammatory arthritis and as well as your Crohn's, then you can wait.

If you just want to feel better (and since it's clear that just your Crohn's by itself is bad enough to warrant it), then I'd just start it and see the rheumatologist later.

Few things
Humira does NOT cause constipation to get worse
Crohns can cause severe constipation - Ds has this
The diet for constipation can be painful with Crohns so Ds uses the Crohns diet
Low fiber low fat no raw vegetables
When biologics work well his constipation is minimal

I would NOT wait to start a drug to treat your Crohns
You may have SpA but your Crohns is agressive and could get out of control
Humira will treat both
You need to follow your GI advice and take the medicine the doctor prescribed you .

Definitely try to get into a rheumatologist but they are aware of what is what
Ds was on humira already when he was dx JSpA
So it's more than possible to still be dx while on humira
The docs added mtx to his humira to help with his joints

Ds has been on humira for over 5 years

Good luck

Also bear in mind humira can take from 3-5 months to work

Thanks! No one mentioned that. I do have one more question...should I take any action to address immunosuppression? (I have a friend with RA who takes a biologic, and she's super careful. My GI didn't say anything about this...)

Fwiw
Ds was dx at age 7
Biologics by age 8
Went through all of elementary school and middle school with tons of kids coughing /sick etc...
He was fine
No extra illness
He actually got less sick than my "healthy" kid
You have to remember the immune system with ibd or spa etc is over active
So this just calms the immune system down to a normal level

We just have Ds wash his hands a normal amount
And get a flu shot

Good luck