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Remicade taken away, and failed fistulotomy today

Really feeling bad. After dealing with this fistula for almost 2 years I went in for fistulotomy today. My CRS thought for sure it would be a safe and superficial one but when she got in there it was a bad one that would require cutting through sphincter muscle. So I woke up with another seton instead. I'm glad she knows what not to do but I had a seton for 6 months and now I'm just so sad to have one again, now probably indefinitely.

In the meantime, I went for my year check up with GI about a month ago and she informed me that she can no longer prescribe the Remicade for me b/c her billing office wont let her use the Crohn's dx anymore. I'm one of those that has all the symptoms for years, and the complications, but not a definitive test. I was on Remicade for a year and after the 3rd dose my symptoms went away almost entirely, I had my life back. That means nothing to GI doctors apparently.

My wonderful Rhuemy has since put me on Humira to see if it will help the ankylosing spondylitis symptoms, two doses so far and while it seems to be helping the gut inflammation, nothing for the joints so I may not be able to stay on it. I'm so tempted to lie but I do need something for the awful joint pain too.

What a roller coaster. Last year was the best in a long time. Remicade had tummy feeling good, low dose prednisone had my joints feeling good, and there was hope for the active fistula to heal ( there was a second one found on mri too but not active). Now I'm on the way back to misery.

Just needed to vent tonight,

Lynn
 

Maya142

Moderator
Staff member
Why can't your rheumatologist prescribe Remicade? It is used for AS too. My daughters both have AS and both have been on Remicade. The younger one also has Crohn's.

I would also see a different GI. If you have fistulae, I would guess it's Crohn's. What tests have you had? What did your last scope show? Have you had an MRE/pillcam?

Even if you do not have Crohn's, you could easily get Remicade prescribed for AS.

Also, Humira does take longer than Remicade to work. You're only two doses in, which means you've only been on it one month, right? You need to hang on for at least 3 months. For my girls, it took between 3-6 months to work.

AS can cause subclinical gut inflammation - that is, mild gut inflammation that usually does not cause symptoms. This gut inflammation closely resembles the inflammation found with Crohn's (since the two diseases are related). However, if you have complications like fistulae, it sounds like the inflammation is much more severe than you'd usually see with AS related gut inflammation -- it sounds like Crohn's.

I would definitely get a second opinion from a different GI. Perhaps your rheumatologist can recommend someone?

Hang in there and good luck!
 
Thank you Maya,

Rheumy wanted to try Humira b/c Remicade was also not helping the joints but wonderful for the tummy inflammation. Every time I taper off the prednisone the joint misery comes back.

Yes, I think another GI will have to be the plan, but oh how I dread going through the tests again. It's so depressing when nothing shows up. I had a negative colonoscopy 4 years ago, negative SBFT and Prometheus around the same time. Negative MRenterography last year. GI says fecal calprotectin and pill cam too expensive. I really had just given up for several years and lived with the copious amounts of liquid coming out of my body and abdominal pain, joint pain, eye inflammation, until the fistulas showed up.

Thanks for the support!

Lynn
 

Maya142

Moderator
Staff member
I would definitely give the Humira a try - it may be better for your joints and hopefully it will work for your gut too. It's really MUCH too early to tell.

For what it's worth, my girls both needed Humira shots weekly plus Methotrexate before Humira really worked for them. But then it worked like magic!

It really did take quite a while to work for them - 3 full months for my older daughter and about 6 for my younger daughter. In hindsight, I can't believe we stuck with it that long - it's hard to be patient when you're hurting - but there are so few biologics (and even fewer for kids) that you should give each one a good chance.

Most insurance companies will cover Fecal Calprotectin if you are not diagnosed yet. And same with the pill cam. I do think you'll have to do testing again. SBFTs are used less now, so hopefully you can avoid that one. But at the very least, I'd ask for scopes and a pillcam.

For joints - ask your rheumatologist about Voltaren gel. It's an NSAID, but it's topical, so it shouldn't bother your GI tract since not very much is absorbed. My younger daughter, who has IBD, is allowed to take an oral NSAID because her AS is much more severe than her Crohn's. Celebrex or Mobic are usually the ones used because they're easy on the gut. Obviously, you'd need your GI and rheumatologist to clear that.

Besides that, we use a lot of heating pads and ice packs. Movement helps - whether it is simple stretching or gentle swimming or biking.

Don't give up! You will find something that works for both issues. Even if it's not Humira, there is Simponi, Cimzia and Stelara are more drugs in the pipeline.

Lastly, which joints bother you the most? Both my daughters and my husband have AS, so I may have some suggestions if you have certain joints that are very painful.
 
Thanks Maya,

The joints affected are both knees, hips, shoulders, thumbs, and low back. It's the low back that is the worst at night. The low back pain is terrible at night, I wake up frozen up and it's very difficult to turn over, sometimes I need help.

I will ask to continue the Humira trial when I see Rheumy next week.

Lynn
 
Hi Lynn

For how long have you been on prednisone prior to the developpementof fistulas? And what was the highest dose?

Have they eliminated differencial diagnosis such as Behcet?
 
I am confused! There is no definitive test for crohn's. I think something like 30% of crohn's patients have biopsies that test positive for granulomas (inflammation plus granulomas equals crohn's, but inflammation plus no granulomas equals no granulomas but not no crohns). Have they not seen any inflammation (and to test thoroughly you need a capsule endoscopy, really, or a double balloon enteroscopy). I've had a number of clear colonoscopies but positive endoscopies and more recently, symptoms that have taken me to the ER where inflammation shows on CT scans.

You have fustulae, eye inflammation, and AS and your GI hasn't diagnosed you with anything? A crohn's diagnosis is usually based on symptoms plus tests, but shouldn't be excluded based only on negative tests. I really hope you are able to find a new GI and that until you do your rheumatologist helps you with the right medications.
 
Hi Lucy, I had been on 5mg of prednisone for about a year before the fistula was found. I know that theoretically prednisone can cause them but I was on a really low dose. I think it's more likely that the years of chronic diarrhea caused them. Also the other fistula that was found looked like it had been there for a long time, at least that's what the radiologist thought. Interesting about Bechet's but I don't have any of the mouth sores or other skin symptoms that would indicate that.

Hi Jabee, thanks for the support. I am confused with GI too. My rheumy and CRS both think this looks like crohn's. I think GI docs have to have a positive test put in front of them or they won't help. I also think the irritable bowel syndrome fall back makes them lazy. I did ask at that last visit with this GI what other illness would have such a dramatic effect from Remicade other than crohns/uc? She at least admitted that she doesn't know but it's not IBS and she didn't want that put in my chart. Oh well, I'll be shopping for a new GI.

Thanks,
Lynn
 

Maya142

Moderator
Staff member
Thanks Maya,

The joints affected are both knees, hips, shoulders, thumbs, and low back. It's the low back that is the worst at night. The low back pain is terrible at night, I wake up frozen up and it's very difficult to turn over, sometimes I need help.
Have you tried a heated mattress pad? My daughters LOVE them. You can also use a regular heating pad. One of my girls likes heat, the other loves ice. A TENS unit might be another good idea.

Finally, sometimes taking a muscle relaxant can help with the horrible back pain and stiffness at night. Inflammation can cause muscle spasms, which in turn cause pain. As you are in pain, your muscles tense up and the cycle repeats.

That is my younger daughter's major problem right now. She does physical therapy twice a week and her PT does massage which REALLY helps. She also does take a muscle relaxant at night.

I don't understand the lack of Crohn's dx either- I would DEFINITELY get a second opinion!
 
An update, I found a new GI that actually considered my history and symptoms and he's going to try to help. He said he would have no problem prescribing remicade again or whatever else I need if the Humira doesn't work out. He also said we could add Imuran if needed and it might help the fistula. So the plan is to give the Humira a couple more months try and re-evaluate. After 4 doses it's helping gut some (not as good as remidace) and joints not at all sadly.

Maya, thanks for all of the good suggestions. I'm glad your girls are finding some relief. I do think it's severe muscle spasms that get me at night. Once hubby flips me over then I can pull my knees up and after a little bit I can move again. I do have flexaril and take it occasionally. It helps a little but I find it causes insomnia, I know many people sleep better with it.

Just feeling better now that I have a GI on board willing to help, along with my trusty rheumy.

Thanks for the support everyone!
Lynn
 
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