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Crohn's Disease
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Posted 4/7/2011 5:56 PM (GMT 0)
I was diagnosed with Crohn's 2 years ago. I've been taking entocort ec and asacol almost the whole time. My sed rate is staying in the 60's and crp at 2.4. I'm not having any Crohn's symptoms. If all this inflammation is in my intestines, shouldn't I be having some symptoms? I do feel so tired and achy all the time and my joints hurt sometimes. I have been seeing a Rheumatoligist for about 6 months and he tells me I just have some inflammatory arthritis and just keeps sending me for the same blood tests over and over. I've tested negative for RA and the type of arthritis that is sometimes linked to Crohn's. I feel like I'm going crazy and that people think I'm a hypercondriac since I hardly ever have a day that I feel good! Does anyone have any suggestions, something the drs might be missing? I've got to get feeling better! Being a single mom and working full time, I've gotta have more good days!

*Gave your post a title*

Post Edited By Moderator (Nanners) : 4/7/2011 12:01:29 PM (GMT-6)

Posted 4/7/2011 5:59 PM (GMT 0)
I'm sorry I have no suggestions for you, but you have all my sympathy, I know how you feel!
Posted 4/7/2011 6:08 PM (GMT 0)
Is all your daily discomfort from the joint pain vs stomach pain? As for the inflammation your sed rate is showing it could be caused by the joint pain.

Have they given you anything to take for pain? If your GI or Rheumy is not treating your pain, I suggest you see your family doc and talk to them about it. No need to suffer so. If you aren't allergic to sulfa meds, you might talk to your Rheumy about something like Azulfadine. That might help both the Crohns and joint issues.

I am currently in remission and I am always, always tired. I also have alot of osteoarthritis so am in pain almost everyday. But I do have pain meds that help with the pain. Hugs!
Posted 4/7/2011 6:41 PM (GMT 0)
Rianne, most of my complaints for the last 5 years have been about joint pain. My rheumatologist feels it is all due to my Crohn's, and consistently urges me to ask for more effective IBD treatment from my GI. My GI says I'm not "sick enough" to take immune modulators or biologic medicines, but I may reach the point where I insist or eventually change GIs. My SED rate and CRP are typically normal, btw.

I think it is entirely believable that your aches and pains are directly attributed to Crohn's. The entocort and Asacol are not going to address inflammation in the small bowel (entocort targets the TI). You (and I) may need systemic medicines to deal with that. Perhaps trying prednisone for a few weeks might give you some evidence as to how effective a systemic medicine would be. Or maybe a pill-cam to see inside the small bowel.
Posted 4/9/2011 5:20 PM (GMT 0)
Well, I seen my GI yesterday and my sedrate is now up to 78. He says that is probably the reason I am feeling so tired all the time. He is urging me to think about starting humira or remicade which scares the hell out of me. And no, my Dr's are not giving me anything for pain but motrin. And I am allergic to sulfa, so I cant go that route. Most of my stomach discomfort is from my IBS, which is the painful bloating so bad that i sometimes look like I'm 8 months pregnant. I do take Levsin but it usually doesnt help much. But I'm gonna do some research on humira and remicade. Thanks guys
Posted 4/9/2011 5:58 PM (GMT 0)
Well first off we Crohnies are not allowed to take Motrin or Aleve type products, they can cause bleeding and start flares. We are only allowed Tylenol for over the counter pain meds. If the GI won't prescribe pain meds, go see your family doc, thats what I had to do. Remicade and Humira will both help with the joint pain. Hugs!
Posted 4/9/2011 7:47 PM (GMT 0)
hi rianne
I'm also a new member here on healing well but unfortunately not new to joint pain or feeling ridiculously tired all the time. Those symptoms have plagued me for years and I was always so annoyed when my RA tests kept coming back negative.. This was lonnnggg before I even had an inkling that I might have Crohn's.

BTW there is NO test to prove or disprove you have Crohn's Arthritis. (I talked to my PCP/rheumy just this past Weds and asked him about Crohn's Arthritis and he said the theory behind it is is that the same things that are causing the inflammation in your gut can also cause inflammation in your joints)

My CRP was always higher than normal when I had bloodwork done at my PCP for years and when things were getting worse and worse for me he finally told me to see a rheumy (not the one I see now). That doctor did a ton of tests which included testing my vit D which was sooo below normal, and iron also so low.. and although my RA was borderline he said that the numbers were so low the positive lab remark was to be ignored. I was also DX by him for Fibromyalgia.. but sometimes I can't tell what's making me so tired.. the Crohn's or the Fibro.. and they both hurt like hell!

As per pain medication none of my doctors will prescribe pain meds for me. In NYC they are so afraid they will be taken bofore a board or something for prescribing too many narcotics because all our rx paper have a UPC code on them. I cannot take tylenol as it makes me sick, and so because most of the pain meds are mixed with either aspirin or tylenol it makes my life very difficult. I have to take fiorinal (migraine pain killer) that contains aspirin.. but instead of taking it as often as I used to, I take it only when I can't take the pain anymore. It's not a good way to live. NEVER take ibuprofen or aspirin (NSAIDS) is the rule with IBD but my GI knows how bad my migraines are so I get a pass now and then

Also you didn't mention what type of Crohn's you had.. as I wrote in another recent post, the biologics are a double edged sword with stricturing Crohn's.. on one hand they heal things very quickly.. but on the other.. if you have an inflamed stricture it can heal it so quickly that even more scar tissue grows and the stricture gets worse.. Another thing to consider is that since remicade and humira are given to RA sufferers as well as Crohn's patients on first glance it may seem like a no-brainer.. but since you don't have RA another GI may want to try 6-MP or another class of drugs before they go to the really expensive biologics.. anyway something to think about.. or at least talk about those options with your GI.
NY Veggie
Posted 4/9/2011 9:26 PM (GMT 0)
Have you been checked for fibromyalgia, Rianne? It's not uncommon for people with illnesses like Crohn's to develop secondary illnesses like fibro, and this diagnosis would explain your fatigue and pain.

As far as management goes, you might like to look into getting regular massages, if you can afford it. Find someone who is experienced in pain and fatigue and auto-immune-type-illesses; start slowly and gently; and increase intensity and time as you're ready.

Tai Chi is also said to be helpful, and proper relaxation / meditation.

Another thing that might help is for you to become aware of your energy envelope, and to use pacing. This is a common rehab strategy with fibro / cfs and some other illness-related fatigues, and might help you tremendously, if you give it time. You can read more about it here:

http://www.cfidsselfhelp.org/library/topic/Energy%2BEnvelope%2Band%2BPacing

Warm water therapy can also help the aches and pains too.

All the best,

Ivy.
Posted 4/9/2011 9:51 PM (GMT 0)
Ivy
thanks so much for posting this website.. I never saw it before.. bookmarked it
My long term plan is to start tai chi or yoga and also do some water exercise when I am no longer a walking 'timebomb' and when I have healed from surgery.. can't afford the massage but perhaps my health ins covers some of that
I do remember doing yoga many moons ago (in my 30's) and it helping with some aches but not all the time.. still something is better than nothing
NY Veggie
Posted 4/9/2011 9:58 PM (GMT 0)
If you look around, you may be able to find a massage training school nearby that offers cheap massages - just an idea.

I discovered a great exercise book and dvd last week:

http://www.amazon.com/Home-Workout-DK-Publishing/dp/0756657342

It has very short exercise routines broken into very simply explained individual postures and activities, and you can do as few or as many as you like, so you're not committed into doing a full fifteen minutes or pushed further than you're ready or able to do. The great benefit for me is that they have a whole section on the back, and back & hips are a hugely problematic area for me. Just a few of those postures or exercises a couple of times a week has made a HUGE difference to my pain levels. The book also has sections on pilates and yoga, as well as body strengthening, general workouts, etc.
Posted 4/10/2011 3:41 AM (GMT 0)
I didnt think I should b taking motrin either! My GI knows I take it sometimes and when I complained of pain to my rheumy, he told me I could take more! (which I havent). I also live in an area where drs r scared of writing rxs for pain meds. So I've just been sucking it up and dealing with it.

~Ivy~ My rheumy did mention fibro as a possibility, but hasnt diagnosed me with anything. And thanks for the website, I'm gonna check it out.

~NY Veggie~The disease is in my small bowel. I have tried 6MP but my body couldnt tolerate it. Also tried Pentasa and had a reaction to it. So I guess since I'm not having any luck with any of these meds, maybe biologics is the next step? I dont know.

It's just really scary to me that once I start remicade or humira, I have to use it for the rest of my life. And since I only have a mild case of Crohn's, I didnt totally understand why my GI was even mentioning these meds. But he tells me since I'm not responding to oral meds, that if I dont start the shots or iv meds, that I will end up with scarring and strictures and surgeries. It's just soo much to think about, my brain hurts =( So glad u guys r here
Posted 4/10/2011 3:58 AM (GMT 0)
That's right; the point is to control the disease as well as possible, to ensure that mild disease doesn't grumble away and lead to strictures and fistulae and other nasties, and leave you needing surgeries or, at the very least, with increased pain and less quality of life.

Remember, you're unlikely to be on Rem or Humira for life. Many (most?) of us only last a few years before we start losing response and have to change to something else. And there are more promising drugs in the pipeline.
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