# Crohn's and Crohn's Sacroiliitis



## turtlegirl (Feb 25, 2012)

Hello Everyone,

So, this is actually my first experience ever with a forum type of web experience.  I was searching online about my condition, as I am always looking for new pain relief suggestions, and I saw this forum and thought maybe I could receive and potentially provide some help.  I apologize for the length of the message, I have just never actually sat down and written about my experience.  

I am a 28 year old female and have had a diagnosis of "Crohn's Colitis" for a little over 4 years.  I had never had any bowel issues before the night I was breaking up with my boyfriend of 5 years, when I was on the toilet about every 10 minutes.  In retrospect, this makes total sense because Crohn's can be triggered by stress.  Anyway, my symptoms continued to be pretty bad, and I finally made the decision to see a GI doctor after a night or two of going to the bathroom every hour, pain that was so bad it made me cry and bleeding.  I had my first colonoscopy and when I received my results in the mail, the diagnosis was "Crohn's Coliltis."  The doctor never called or discussed with me my condition, so I was never really sure if I had Crohn's or Colitis, or what, just what medicines I was supposed to take.  He originally started me on Prednisone, Asacol and Imuran.  These greatly helped my condition, and eventually I was taken off the Prednisone, took Entocort for a bit, then just had the maintenance meds.  I currently take Asacol and Imuran.  

Over the course of the next year and a half or so, I would try to wean myself down to as low amount of meds I could go (I hate the fact that I have to take all of these pills in my 20s).  I would go too low and have a flare up maybe about once every 6 months.  Luckily, though, as long as I did steroids for a little bit and increased my maintenance meds, I could recover rather quickly.

About 3 years ago, I began to have some minor pain in my neck and shoulder area.  I tried stretching, going to the Chiropractor for 3 months, probably bought a million different pillows, etc., but it never really got any better.  Then, about 6 months later, I woke up with an intense pain in what I now know is my left sacroiliac region.  To make a long story short, over the course of the next year, I saw 3 Orthopedic specialists, a neurologist, did physical therapy for 6 months, acupuncture, had 2 root blocker steroid injections, 2 MRIs, 3 X-rays and an ultrasound, all with no results.  Everyone had told me that I had a "perfectly healthy spine."  I was in pain all of the time and was at a complete loss about what to do about it.  I had to go to the ER on my 26th birthday because the pain was so intense I literally could not walk, and could barely get by with crutches.  They sent me home with hydrocodone, which made me loopy but clearly didn't help the symptoms.

My physical therapist had suggested going to a rheumatologist because she knew there was nothing she could do, and that I might have something wrong in my blood.  By the time I was actually able to get an appointment with him, I had had pain for 2 1/2 years with no real diagnosis.  I was quite hopeless and this point.  I saw him, told him about all of my symptoms over the course of the past few years (I even had a whole page, single-spaced document that listed my entire pain history on it).  After telling him about all of my symptoms, he knew right away that I was "textbook" Crohn's sacroiliitis.  I looked at him in amazement, and asked him, "wait, that's a thing?  Like, other people actually have this?  It's actually a real thing???"  He assured me that indeed, it was, and I literally cried in his office because I felt so overwhelmed with relief and vindication from so many years of having no clue what I had.  My blood test for my inflammation levels and another x-ray confirmed his diagnosis.  The worse part for me was that the first line of my pain history sheet states "Crohn's disease diagnosed 12/07" and not a SINGLE healthcare professional I had seen over the course of the past few years had noticed the connection, even though to my rheumatologist, he had seen it all the time.

Because the only thing that would alleviate the symptoms for me was a high dose of steroids (which I obviously could not take long-term), he suggested Remicaid or Humira.  Unfortunately for me, I am a grad student with crappy student health insurance, have already pumped thousands of dollars down the drain trying to discover a diagnosis, and the $2,000-a-shot Humira just wasn't an option for me.  

On an incredible twist of fate, my boyfriend's sister had been seeing a chiropractor for some back issues, and had told him my story.  He told her to invite me in for a free consultation.  I refused to go because I had already had 3 months of chiropractic care and 6 months of PT to no avail.  However, I figured, "what the hell" and gave it a shot.  I went for my first visit, and he did the normal chiropractor stuff, and I was sucked in, lol.  However, miraculously to me, over the course of the next few months, I actually was getting better.  It was a very slow process, but I eventually have worked my way to have zero lower back pain.  I still have the upper back/neck/shoulder tightness/inflammation/pain, but went from a pain level of 9 to 2-3.  All of this because of damn Crohn's disease!  I really never would have thought.

So, that is my story.  Thank you to those of you who actually stuck it out and read the whole thing.  I know it was long, this has just been such a taxing journey for me.  I have met a few other people with Crohn's, but have never ever met someone else with Crohn's sacroiliitis or other joint inflammation problems due to Crohn's.  If anyone has had similar experiences, I would tremendously appreciate to hear what you have gone through, and what you have done to help with symptoms.  Thanks again


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## Angrybird (Feb 25, 2012)

Hello and :welcome: to the forum. It sucks that it took so long to get things figured out but I am pleased to hear that the back pain is now getting sorted for you. It is fairly common for people with crohns to get joint pain problems especially if the disease is flaring but I have not heard of sacrolitis specifically before.....

Whilst this has been happening has the tummy stayed well on the meds? Would you say they are working in this sense at least?

Am glad you have decided to join us, there is is a lot of helpful info and support here for you


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## turtlegirl (Feb 25, 2012)

Hey there,

Thanks for the response!  All in all over the past 4 years, I have had approximately 4-5 pretty major flare-ups, but most of them have come as a result of me dipping too low in my maintenance meds (they are very expensive for me and I think I just have a mental block about having to take meds).  However, if I have a flare-up, I've been lucky enough to just have to take a Medrol dose pack (Prednisolone I believe) and then take high doses of maintenance meds.  Funnily enough, my rheumatologist told me that typically, the tummy part of crohn's and the joint inflammation part don't go hand-in-hand.  I could have joint pain at any point, not only when I have a crohn's flare-up.  Fun, fun, lol.


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## Miss Underestimated (Feb 25, 2012)

Wow! That's kind of a nice success story! 

If you ever do decide you need to take Humira, Abbott will give it to you.


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## turtlegirl (Feb 26, 2012)

Hi,

I was wondering what you mean by "Abbott" will give it to you.  Is that a pharmaceutical company?  Thanks!


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## Miss Underestimated (Feb 26, 2012)

Yes, Abbott is the manufacturer. http://www.humira.com/global/financial-assistance.aspx


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## OnMyOwn (Feb 27, 2012)

Yes, I was on Humira for a while. Fortunately my insurance covered it with no issues; however, my understanding is that Abbott (the pharma that makes Humira) does provide financial assistance so that the shots are only $5 per month even if you have insurance. For example - my insurance covered my 2 shots per month; however, my copay was $55/month. Abbott contacted me and enrolled me in their MyHumira assistance program in which they covered $50 per month and I only paid $5 per month. I'm still not quite sure why they do this or how I qualified. I am fortunate to have good health insurance and to be in a position financially where the $55/month would not have been an issue for me, but I was still enrolled in the program before I even realized what it all actually meant.


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## turtlegirl (Feb 27, 2012)

Oh wow, that's really, really good to know if I ever decide to do it.  Thanks!!


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## Miss Underestimated (Feb 27, 2012)

> I'm still not quite sure why they do this or how I qualified.


Because they are not the monsters that some people who post here make them out to be. They have multiple obligations - to their patients, to make the drug available to those who need it, and to their investors, without whose money the drug would never have been developed. So they establish a "fair market price" based on their costs, and that is what they charge the insurance companies.

Sorry for the economics lecture.


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## David (Feb 28, 2012)

Wow, that was quite a story, thank you for sharing it   I'm so sorry you've been through so much but I'm glad you found us!  I hope you stick around!

If memory serves me, pasobuff, one of our Forum Monitors has sacroiliitis.  I'll link them to this thread.

So... I hate to bring this up and this line is actually an edit... but... with the symptoms higher up your back, I'm going to suggest you research Ankylosing Spondylitis. 

Quick question: throughout all of this, have you had your vitamin D levels checked?

All my best to you!


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## Lisa (Feb 29, 2012)

Hi there! :welcome:

David is right - I have a diagnosis of sacroilitis - however mine is in my lower back/hip area.  It came on pretty suddenly, and I was bad enough that I went to the chiropractor to see about an adjustment, but it had been long enough since I saw him that he wanted x-rays.....I am lucky enough that Iwas able to go to my GI's office, and spoke to one of the docs who wrote the script after he saw what pain I was in (I had to actually keep moving and couldn't stand still due to the pain)....

Anyway - the chiro didn't help - even almost od'd on Lortabs and that didn't help.....actually laid down on the ground outside (this was summer time)...and it took me a good half hour to get back up! Seriously...

Anyway - I don't mean to alarm anone, this DID resolve itself, and so far no major flares since then - this was a few years ago now. 

Well - I need to get to work - but if you have any questions please feel free to ask! 

Oh - and I Agree with David - I would also have AS checked out due to the location of your issues.....


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## turtlegirl (Mar 1, 2012)

Hi guys,

Thanks for the response.  Ank. Spond. was one of the first things I came across in my research journey when I started having the serious problems, but it was ruled out by one of my many orthopedic specialists.  Pasobuff- the most severe pain I had was in my SI area, but I just happen to have stiffness/tightness in my upper back and neck area, too.  Yours went away on its own?  That's so great!  It took me a long time to get over the fear of never having no pain again.  I am still achy every day, but at least I can do all of the normal activities I once did.

I have been told that my vitamin D levels were low, and I started taking vitamin D, but I think a flare up occurred right after my taking them, and because I was taking fish oil at the time as well, which was passing right through me, I think I may have stopped taking anything supplementary to deal with the flare up.  I have been told I should take vitamin D, though, and have been thinking bout starting back up.  Have you used this?  How much would you recommend taking?  How has it helped you?  Thanks again!!


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## CLynn (Mar 1, 2012)

Love our forum. My sciatic nerve has been bothering me terribly the last few weeks, since I know I am currently in an active stage of my crohn's, thinking my pain is not just a fluke in my back!


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## turtlegirl (Mar 1, 2012)

Hy CLynn,

I had a period of time when I thought I had sciatica b/c my symptoms seemed to mirror the symptoms of that diagnosis.  While I do believe that my sciatic nerve was being affected, my guess at this point is that the surrounding tissue was so inflamed (due to the crohn's inflammation pathway to joint inflammation) that it touched on the nerve, which caused severe pain in my SI region, and often shooting down my leg as well.  My rheumatologist said that for some people, the joint pain can coincide with a crohn's flare-up, but for most it does not have to do with it.  My crohn's flare-ups and joint flare-ups only coincided one time.  Who knows.....While I am finally in a state of acceptance of everything, I am still very much in a vague state of understanding when it comes to all of this.  I guess it is a lifetime of learning thing...


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## mnsun (Mar 1, 2012)

Hi,

I too have sacroileac, or sacral ALA, joint pain--so far that is the only joint pain I've experienced in my nearly 8 years of diagnosis.  My joint pain started increasing this fall.  In fact, that is the only symptom I have as long as I watch my diet and take certain supplements.  Lately I've been working out, hoping that will do the trick.  Though I have been upping the D3, 5000 iu every other day, I haven't noticed a difference or lessening of frequency.  

Since the fall, I usually have the joint pain once a month.  Sometimes I think it is associated with diet.  Around Christmas, when my dept at work is given loads of sweets in appreciation, I started to imbibe in the filled chocalates.  This only took a few days before I had pretty severe pain.  Though the worst was when I had a 5 day spell, in October, and limped in to get pain meds--the first time I went to a doctor in 6+ years.  

One theory surrounding Ank Sp, which I tested negative for (HLA test), involves the popular notion of a "leaky gut" which leads me to believe a perforated bowel can leach toxins/pathogens/food particles into the blood which, for whatever reason, accumulate in the sacroileac/sacra ALA region, wreaking havoc.  I think this rings true, as I had a colonoscopy which resulted in polyp biopsies (perforating the gut) and days later (I will always rest my gut from food a few more days than Docs reccomend) after I started eating, like clockwork 8 hours later, the onset of joint pain began.

Now my battle plan involves strengthening the gut--9 grams of L glutamine a day may be called for until the gut heals--but I've yet to order the bulk powder to give it a try.  Also Genetically Modified Organisms should probably be avoided at all costs.  That's corn, soy, canola oil and cotton seed oil for the most part.  The Bacillus Thuringiencis crops, and there derivitives (high fructose corn syrup), as well as Roundup Ready (Glyphosphate and "inactive ingredients", acts as a probiotic exterminator, soaked) crops (soy lecithin is in everything, as well) decimate the gut flora and lead to "leaky gut" syndromes.

Anyhow, I can definitely commiserate and sympathize on the sacroileac situation.  What I really need is a refill for pain meds every four months, or so.  However, my GI insists that shoveling heaps of Pentasa will do the trick--obviously I need to go to a Rheumatologist.  Pentasa for crippling joint pain?  Now I've heard enough from this nut.  I feel like a doctor shopper.  I can't justify limping in to an unsympathetic dunce and spending $150 every 4 months just to get treated like a junkie and given 20 pills for the road.  

I figured I'd try to get a hydro refill (from my Oct prescript) over the phone a few weeks ago (to avoid the doctor visit fees)--that did not go over well.  Instead I suffered for a night and limped at work for two days taking Tylenol.

Thanks for reading.  Please chime in...


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## mnsun (Mar 1, 2012)

BTW, in regards to Prednisone, you should definitely supplement minerals like calcium, magnesium (malate or taurate), K2 and D3 etc. in order to prevent Pred induced osteoporosis.  

Also, see the Low Dose Naltrexone treatment thread's "Helpful links" at the top of the forum.  I think this is definitely worth a try to halt Crohns progression with next to no side effects at a super low dose and a pretty low price.  Read the studies and links--most doctors don't know about it and it seems promising. 

If you care to hear my rantings and reccomendations, check out my post at the Your Story>Success Stories>MY Supps for MY Dis-ease.

Peace.


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## CLynn (Mar 2, 2012)

Wouldn't it be nice if all GI's told their patients to take those supplements to avoid osteoporsis? Maybe I wouldn't be a 46 years old with very few teeth left if this was common practice......one of my pet peeves.


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## David (Mar 2, 2012)

Indeed CLynn.  That's one of the big things we're trying to advocate here: proper monitoring of vitamin and mineral levels.  It's just so important for people with IBD.


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## turtlegirl (Mar 4, 2012)

Wow, all of the information you guys have given is so great!  Thanks so much for being so supportive!


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## David (Mar 4, 2012)

Turtlegirl, any thought how the ortho that ruled out the AS missed the Sacroiliitis?


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## turtlegirl (Mar 5, 2012)

Ha!  That is a very interesting question.  In fact, I saw 3(!) Ortho's, all of whom "missed" the diagnosis.  Basically, from what I could gather from the other professionals, Orthos are so focused on the spine and structural issues that they have very little ability to think "outside of the box" when it comes to back issues.  I've been told that if they can't do surgery on it, they basically stop trying to find decent alternatives.  

Now, this being said, please, anyone who is reading this post, do not take offense to this, as I am not saying that all Orthopedic Specialists make poor diagnosis decisions, etc.  This is only what I have been told on my journey.  I wish to share this information merely as a way to help people who may have had back issues and have not been able to get a clear answer, to be able to seek help from different specialties.  Thanks


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## danielleinseattle (Mar 9, 2012)

*Crohsn and Sever Joint Pain*

Hi All, 

I am new to this forum but have read it on and off since I was diagnosed 4 years ago with Crohns. I too have severe joint pain that accompanies my flares which this summer put me in the hospital because the flare and the joint inflammation could not be controlled without iv. pain medication. I think the joint pain was worse than the bleeding. I couldn't even get out of bed on my own because both knees and ankles were so severely swollen and my sacriliac pain was unbearable. The 60mg of Prednisone they put me on did NOTHING to stop the bleeding or bring down the joint inflammation..slowly over time, as with every flare, it resolved itself. But of course, like many of you I live in fear of when the next flare will be...I swear they strike out of nowhere! 

When I regained some strength and was able to stop taking painkillers I decided to read about marijuana and Crohns and was surprised how many articles have been published about the great success people have had controlling pain and inflammation with it and so off I went to get a prescription because I am lucky enough to live in a state that allows that! In the meantime, I started getting twice a month massage and doing pilates to try and give my joints some breathing room and stretch. This is by no means scientific but pilates, massage (which reduces stress) and smoking a little pot a few times a week has kept me almost totally symptom free for 8 months! I am an open minded person who doesn't think there is anything wrong with marijuana as medicine and have had such amazing success with it especially with the joint pain which had laid me out helpless on too many occasions to count that I just felt like I wanted to share that with you all!


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## David (Mar 9, 2012)

Thank you so much for sharing your anecdote Danielle and welcome to the forum!  Would you mind if I copy your post to our medical marijuana thread here?  In addition, we have a medical marijuana forum under the treatment section you may want to check out.

Again, welcome   I hope you share more often!


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## turtlegirl (Mar 10, 2012)

Wow, I never would have thought of that.  Danielle, thank you for sharing.  It is good to hear about someone having the same issues as I have.  I am glad you have found something that works for you.


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