Crohn's Disease Forum » Support Forum » Getting super discouraged with my health team and depressed

11-02-2017, 01:13 PM   #1
Join Date: Jan 2015
Location: Parker, Colorado

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Getting super discouraged with my health team and depressed

I'm typically a positive person with a silver lining outlook. Yet, this recent flare is just killing me. I feel alone and like I'm not doing enough to make it right. I feel like my health team of doctors don't care and don't understand. I being a doormat?

Some history of what's going on. Since July, I've been almost bed ridden daily. My Crohn's is mild (just near the rectum and mild inflammation), yet I get horrific "extras". Arthritis started in my feet, really enthisits. My Achilles tendon was bad. My plantar fasciitis was bad o couldn't walk. Now my erythema nodosum all over my feet and ankles and my wrists and knees. I can't get out of bed without crying in pain to use the bathroom. I'm starting entivyo, but my Crohn's still is mild. Prednisone has no effect it seems as does sulfasalazine. My rheumatologist just keeps saying it is all arthritis but iwont really treat it. Tells me I should be on cimzia instead, but I just started entivyo and want to see if it'll work. I had shingles in my eye so m not really wanting to move back to a big anti tnf drug that can cause it to come back. She doesn't care. My GI just says wait and see. My Crohn's isn't really doing much (I use the bathroom a few times a day normal poops, mucus and blood but not a lot). But the nodosum is destroying my life. With no signs of improvement.

I'm just venting. I'm upset and have endless days in bed and endless pain. I rotate Tylenol and Advil round the clock so I can have some relief and not be on one too much.

It feels like my ankles are broken and all my tendons are snapping but I have to walk on them anyways. I'm about to apply to PA school in the spring for fall start, but now I think I'm crazy because this pain will never go away and what was I thinking. I'm so upset. It's ruining my life.
Diagnosed 2010 Colitis
Canasa 1000mg
Hydrocortisone 100mL
3 abcesses develop needed 3 surgeries back to back
Diagnoised: 2014 Fistulizing Crohn's Colitis
Humira 5 weeks, no longer worked
Remicaid Jan 2015
Imuran Jan 2015 (allergic)
Herpes zoster (eye shingles) Oct 2016 no more remicaid
Entivyo 2017 September
11-02-2017, 06:41 PM   #2
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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Hope you can get help soon. I am going to tag Maya 142.
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
11-02-2017, 06:50 PM   #3
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Maya142's Avatar
I would definitely see a different rheumatologist. Your rheumatologist should be treating your arthritis, not brushing it off! Spondyloarthritis commonly affects all the joints you named, and it causes enthesitis in the heels - both the achilles tendons and plantar fascia.

Both my daughters and my husband have a type of SpA.

Unfortunately, Entyvio typically does not work well for SpA. You either need an anti-TNF like Cimzia or a different biologic, like Stelara. Stelara might be your best bet if anti-TNFs are out. It's an IL-23 and IL-12 inhibitor. It is approved for Crohn's, so it will also help your gut issues and hopefully the erythema nodosum too.

Your rheumatologist can also add something like Methotrexate to help. Sulfasalazine is a pretty mild drug and I'm not surprised that it didn't help. Both my girls tried it too and it did nothing for them. But both responded well to Methotrexate.

I would see a different rheumatologist so you can get the arthritis treated and under control.

In terms of pain relief, for enthesitis, both my girls got custom made orthotics. A podiatrist makes them. They are covered by insurance. They made a HUGE difference to both girls and even my husband.

Additionally, soaking your feet in hot water might help. We got a "foot spa" on Amazon - it wasn't too expensive and it really helped my daughter. It was one of the few things that helped when her feet were really bad. Also make sure you are wearing supportive shoes - we were told that sneakers are best.

Other than that, you could ask to try Voltaren gel or an NSAID. Generally NSAIDs are not allowed for people with Crohn's, but because my younger daughter has much worse arthritis than Crohn's, her GI and rheumatologist have allowed her to be on one. Celebrex is used often because it is easiest on the gut. My girls take NSAIDs with a PPI to protect their stomachs.

If an oral NSAID isn't allowed then Voltaren gel may be a good option - it's topical so less is absorbed and it shouldn't cause gut issues.

I'll tag my little penguin because she may have some ideas.

Good luck!
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
11-02-2017, 08:13 PM   #4
my little penguin
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Join Date: Apr 2012

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Ds has JSpA and Crohns
Right now the Juvenile Spondyloarthritis (JSpA) is much worse than the Crohns

Or GI told us entivyio is out for ds since he has JSoA as well
He took humira and mtx for years
For JSpA and Crohns
He just started Stelara and his JSpA was flaring while waiting for it to kick in

Swimming is a must even when you don't want to move
Paraffin wax (thermabath ) rheumo can write a script
Heating pads and ice packs
Ds was permitted to take Celebrex by his GI for his arthritis

He also uses volteran gel
He has a foot spa for his heels
Inserts dr scholl for his heels

He started Stelara in the middle of August and finally lowering prednisone a bit
Also added ivig jury is out whether that helps

He has a wheelchair for going out when his heels /anklesknees are bad
So he still goes out

Definitely find a another rheumo who understands SpA (spondyloarthritis)

Good luck
DS - -Crohn's -Stelara -mtx

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