Crohn's Disease Forum » Extra Intestinal Manifestations » Mouth » From the lips to the hips?!


11-24-2008, 09:35 AM   #1
obxgirl
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from the lips to the hips?!

Good morning, everyone!
I really hate to even mention what is going on with me, especially after reading what so many of you have been going through - but I've always been so lucky to enjoy good health, so now when 3 different things begin at the same time, well, I have to wonder if they may all be connected in some way.

I've had digestive issues for years, since 1987, I'm 49 now, so it's been going on intermittently since I was 28 - wow that's 21 years! There are periods of time that it's worse, for weeks, months at a time, and other times it's not so bad. Diet doesn't seem to make much differenct, although any kind of stress at all certainly does - for the worse. For lack of a better word, I'll use the word "flare" for the times that I am actually afraid to stray too far from my house - and wouldn't even consider going out to eat. During a flare, anything I eat - must come right out. i can feel it coming on - shooting pains in my abdomen, sometimes accompanied by nausea, but definitely pains. During flares, it could be 3, 4, 5, sometimes even 6 times a day I have to make a beeline for the restroom - a quick beeline! Other times - not flare - most foods still upset my stomach, but not to the same degree. Fried foods are DEFINITELY the worst. French fries, and pizza! Only to be eaten at home!

Recently, though, within the last 3 weeks, 2 new symptoms have appeared with this current flare - I have open sore-like areas on my bottom lip. They burn, sting, and are just painful to have. They're not cold, or canker, sores. I've had them a few times over the years, but usually only 1 area. There are more this time, and my lips are very dry. The other symptom is very painful joints in my hands. The middle joint, and the pain varies by finger. They seem warm, and even a little swollen. I have had this before, a few times. But these 3 symptoms have now come together all at the same time - could they possibly be related??

I had a colonoscopy about 9 years, for same stomach issues - they determined ibs. I elected to not take any medication, but try to control it on my own - I'm not very good about taking any kind of medicine, so unless absolutely necessary, I'll try to wait it out - whatever it is. So, if it was negative for any kind of ibd at that time, could that change, at some point?

Just as an aside, my mother has RA, Sjogren's, and lupus. I rarely get a cold.

Any advice, information, please share!

Thank you.

obxgirl
11-24-2008, 10:14 AM   #2
CookieCat
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Hiya Obx, nice to meet you. I'm a bit younger than you but can still relate all too well.

The issue of sores/ulcers on the lips etc. was just brought up in General IBD Discussion by KimmieKay with the title 'Anyone else had sores in the mouth', which also includes a link to another earlier thread. I found both real helpful.

Like Pen said it does sound like you may have Crohns esp. with a family history of auto-immune disease. But never let anyone tell you that IBS isnt a real genuine condition on its own either... its different from Crohns but it still sucks. I had that diagnosis for years too, before I got the Crohn's diagnosis. My gastro doc now thinks I might still have elements of IBS as well. What fun!

Good luck with finding out answers Obx. Takes a lot of energy and determination at times but keep pushing for one and don't let them push you aside OK? Keep posting.
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11-24-2008, 10:17 AM   #3
obxgirl
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Hi Pen,
Thank you so much for your reply!
I'm from the northeast US. We call it the flatlands.
What is LDN?
And the way I try to control it myself is - I eat virtually no carbs, some protein, little vegetables, sometimes a banana, and almonds - which 1/2 the time are fine, and the other 1/2... not so fine, and, no milk. If I stick to that - well, of course I lose weight, but I also have 1, at the most 2, trips to the restroom! That's control!
I haven't tried a gluten-free diet, although I think I did buy a book about that diet, once - looked, not easy to follow.

Hope you're feeling ok today, take care.
11-24-2008, 01:08 PM   #4
soupdragon69
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Hi Obxgirl

Welcome to the happy throng!

Sounds like you have been playing with your diet for a long time now and that in itself can be a sign how much things are bothering you!

IBS is very much a nasty all of its own as Cookie rightly says but it is also possible to have both IBS and Crohns/IBD. Because Crohns is autoimmune and autoimmune issues already run in your family you are right to flag it up.

You are very right that it is possible to have joint inflammation and mouth sores all at the same time as your guts playing up and often are a sign of "flare" and inflammation gut wise....

You will also find many of us have been told IBS for years before final diagnosis with Crohns or Ulcerative Colitis (but Crohns in particular) because they are so elusive and difficult to nail being Crohns itself can occur anywhere from mouth to anus and thats ALOT of gut to hunt around in eh?

Get yourself off to a Gastro consultant asap and have a review. Dont take no for an answer either! You need relief, you need results and you need appropriate treatment no matter what the cause is!

There is a thread on sore and stiff hands if you can hunt it out too... I have recently been diagnosed with an inflammatory arthritis that presents like rheumatoid and they are treating as though it is rheumatoid arthritis, I have Crohns and IBS amongst other issues. So no you arent crackers and yes start pushing for relief and a better quality of life for you!!

Keep us posted on how you are doing. Know we will always listen and help anyway we can ok?

Hang in there things will get better...
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Brittle asthma 1996, Hypothyroidism 1998, Severe Crohns ileitis 2006 , Severe IBS 2007, Inflammatory/Rheumatoid Arthritis 2008, Sebhorreic Eczema and Folliculitis 1992, Roseca, steroid induced acne and Hidradenitis Suppurativa 2008, Multiple allergies and food intolerances diagnosed from 2003. Newly diagnosed fibromyalgia Dec 2009. Newly diagnosed calcific tendonitis Jan 2010. Chronic Pain diagnosed Dec 2010.
11-25-2008, 01:00 AM   #5
kello82
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hey obx
whew! rough to have 2 bowel disorders, thats gotta be confusing to deal with.
like the others have said, both the joint pains/swelling and mouth sores are aspects of crohns. i have mouth sores too, different than the ones you are experiencing, but as youll see in the thread that cookie mentioned, theres a variety of the sores that people talk about.

thats really interesting about your diet. have you heard of the Specific Carbohydrate Diet? its very much like the diet youre already on it seems, its a book called Breaking The Vicious Cycle. I was on it, but just recently stopped bc ive lost too much weight in the flare im in. i plan to return to it once im more stable though! theres a thread about it in the food and diet section of the forums.
welcome to the forum and good luck with everything
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