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Crohns and complications...do you have any extra's?

C

cagfire

Does anyone have any of the 'other' complications of crohns?

I have inflammation in the joints which at times means I have to use a walking stick or a neck brace. My right knee is the worst and the fingers on both hands. My left little finger is constantly swollen and red from the inflammation. It's not degenerative inflammation like arthritis of which I'm grateful, but it does hurt like hell. I've had to quit a job because I started having attacks in the lower spine which immobilised me until the flare up passed.

I can be fine one minute, then bang, up goes the knee and out comes the walking stick.

I've also had my first inflammatory attack in the eyes last year. My vision went all goofy for about an hour. Luckily I was at home but I couldn't even watch tv.

I don't get the nasties like fistulas.

Anyone else have any nasty extras?

Cheers
Lisa
 
M

Mozam

Guest
Hey Lisa!

Hope you're doing ok over there in oz!

I have had a mixed time with added extras in the last few years!!! A long time ago just as I was hitting puberty, I had a fistula - nasty, nasty thing. It couldn't have happened at a worse place - right on my down belows. When you're a young guy and finding out about sex and stuff like that, when an ADDED growth hits you and then bursts, you kinda freak out. It took something crazy like three years to heal properly, but that was due to things like low iron and zinc levels in my blood.

I have been struck by arthritis in certain places too - mainly my knees and my shoulders. It's not so bad that I can't move, but I have been told that in later years it will probably get to that stage. At the moment I'm trying to get into as much sport as I can, like football (soccer), golf, squash etc - really enjoy them all to be honest.

I'm maybe not the best person to speak to about this kinda stuff, there are some other guys and gals on here who've had a lot worse. But those are my experiences anyway.

Much love to ya.
 
mikeyarmo

mikeyarmo

Co-Founder
I am lucky that I really have not had any other complications to my health other than Crohn's Disease.
 
C

cagfire

wow Mozam, I've never had a fistula, of which I am eternally grateful, so I don't really know what they are like. They sound like an horrendous sort of ulcer...ugh.

There are all sorts of complications that crohns can cause. The arthritic type inflammation is one...when it first started I was in my mid 30's at uni and I ended up having to get home help from the local council as I was bed ridden some times.

Crohns can involve so many other parts of the body that it is really amazing. Skin rashes, eyes, inflammation can spread to other internal organs, it's a truly systemic disease.

When I first started getting the joint flare ups in the late 90's none of the GI doctors had ever had a patient with it. I've still not met another person with the joint flareups (actually in person, not in forums etc).

I can really appreciate how the fistula affected you Mozam.

You sound like a guy who has been through it and come out the other side with a good sense of who you are and where you are going.

Crohns is such an 'iffy' illness. It doesn't fit into a nice, neat shoebox of symptoms or treatments, every one has a different story to tell. Sometimes I wish it was as simple to treat as say diabetes. A blood sugar test and then a jab, or a diet to follow or something. Sorry. Will stop ranting now.

Are you in spring at the moment? Whats the weather like in Scotland?
 
Tami Lynn

Tami Lynn

Forum Angel
I've had mouth ulcerations (like a realy bad case of canker sores--and boy do those sting and hurt) and skin rashes on my shins, feet, and the palms of my hands.

I used to have some joint pain in the past, but nothing that was bad enough to need pain medication.

One thing that I've often been plagued with is episcleritis (eye inflammation). It drives me nuts, b/c my eyes look so red when I've got an inflammation in them (it seems to affect my right eye more than the left).

That's about it for me!

Oh, and thankfully I too am one of the extremely blessed ones to have never experienced a fistula. Those sound so horrible to deal with and I can definitely sympathize with anyone who has experienced them!
 
K

Kate

Guest
ive been really lucky so far i have nothing but dry skin (really bad) from my meds but thats it fingers crossed
 
L

Lacey

Guest
I would say my biggest problem (and i guess you can call it "an extra") is my oral ulcers. I used to get really big crater like ones all in my mouth and down my throat. I also have a geographic tongue which is somehow related to everything else. I still get the sores, but they dont usually get as big as back in the day. I also had some fistulas when I was much younger, but i dont remember that much about them. All my other extras were just side effects of prednisone, such as joint pain and high blood pressure.

-Lacey
 
D

Donna

Guest
Well, I like most of everyone who has posted get the joint pain. Sometimes so bad I need pain meds just to sleep and a cane to walk. And it is in my elbows, wrists and fingers, which really sucks cuz I am a crafter. Occasionally it is in my knees and ankles too. They usually signal my flares. I also get the eye problems, tho not every time. Also the mouth sores, rashes on my forarms which drive me INSANE!, and they keep tabs on my liver. And, I get major headaches, much like migraines. And I get MAJOR fatigue. I could sleep all day and not budge, if I didn't have to poo 20 times a day!

It would be nice if they could come up with an easy test to diagnose, and a once a day pill to keep it in check. This has got to easily be the weirdest and most broad-symptomed disease I have ever encountered!
 
C

cagfire

Donna said:
Well, I like most of everyone who has posted get the joint pain. Sometimes so bad I need pain meds just to sleep and a cane to walk. And it is in my elbows, wrists and fingers, which really sucks cuz I am a crafter. Occasionally it is in my knees and ankles too. They usually signal my flares. I also get the eye problems, tho not every time. Also the mouth sores, rashes on my forarms which drive me INSANE!, and they keep tabs on my liver. And, I get major headaches, much like migraines. And I get MAJOR fatigue. I could sleep all day and not budge, if I didn't have to poo 20 times a day!

It would be nice if they could come up with an easy test to diagnose, and a once a day pill to keep it in check. This has got to easily be the weirdest and most broad-symptomed disease I have ever encountered!
Click to expand...
Hey Donna,

Like you I am constantly fatigued. People look at me and say 'but you look so good' but the fatigue is just so never ending. I don't drive long distance now and sometimes I get so overtired that I can't sleep which only makes it worse. I've found that with the joint pain if I get flare ups bad enough and for long enough that a cortisone injection will settle it down for a couple of years. Hard to do with the small finger joints. I can totally hear where you are coming from with the hand flare ups...I'm a potter and printmaker and the pain sometimes is excruciating. I've had to grab my husband sometimes while shopping and hold on to him to stop from falling.

Lisa
 
J

jlbastian

Guest
Mostly it's just the fatigue and joint pain, but the Remicade infusions definitely help with that, as long as I keep on top of them.

Also, kidney stones, which I am told could possibly be related. I have had 6 or 7 bouts with kidney stones in the last few years since being diagnosed.
 
D

Donna

Guest
Wow Cag, that does suck. I never thought about the cortisone shots, only because I was told the "arthritic" pain is from the disease, and is actually not arthritis at all...didn't think the shot would work. I can handle the pain in my elbows and knees...its the wrists and fingers that kill me. I can't hold anything when it flares like that...and when I go to bed at night, my whole arm will go paralyzed to where I need to literally pick it up and move it if I want to roll over or change positions. And, I have started carrying a cane with me, not necessarily to walk with, but to help me off the furniture. That is the hardest. I am sure walking with the cane is coming soon. :(

This disease is sooo strange. It is amazing how many "side affects" it has. You would think it would stick to your gut and leave it there, but it doesn't. And no one has the same problems as the next guy. No wonder there is no cure. :(

Hope this helps!!!!
 
kc0eks

kc0eks

Interesting thread :)
Lets see... Joint pain is one I get from time to time. Today I woke up and my knees wouldnt move, and when they did it was pure hell for a few hours. My wrists, shoulders, knees, and ankles give me random fits. Once and a while they warrant a vicodin or perc, but those make me feel sicker..so its all a gamble.

Mouth sores used to be a common thing for me, lately it hasnt been an issue

My new, biggest, and most painful issue is a fissure...and oh my god does that hurt. I have never, EVER, feared the bathroom so much in my life. No amount of pain medication touches this. Luckily the prednisone seems to be slowing things down, allowing it to heal a little. Also have an anesthetic ointment that sort of/kinda helps. This little gem has made my life hell. I have been unable to sit, drive, or walk really. Sitting in a car is the WORST. Bathroom trips consist of blood and pain of such intensity I would just as rather be crushed by some large object. When your sight goes wacky, and you cant see anymore from pain, everything else seems so minor.

Anyway...I dont think I saw a mention of depression, cause this disease most definately can have a huge impact on your mental state!

But aside from all that, life goes on :)
 
K

Kate

Guest
ok well reading on maybe i do have some extras but im not sure if they r connected to my crohns but it looks like they might be. I get eye pain that tend to be when in a flare, i get knee pain but i have mostly put that down to the damage from surgery and i get major headachs but like i said im not sure if they r crohns related or just me
 
Anyalee

Anyalee

I get the headaches -or I did. My muscles become achy, especially my neck and shoulders and the stiffness in these muscles creep up into my head. I find yoga incredibly helpful and I take aloe vera juice for the arthritic knees and writs.
 
K

Kate

Guest
Anyalee said:
I get the headaches -or I did. My muscles become achy, especially my neck and shoulders and the stiffness in these muscles creep up into my head.
Click to expand...
Anyalee are you going through a stressful patch when this happens?

I carry my stress though my sholder and neck casueing really bad head aches so i go to a physico to loosen it all up then im good to go after afew visits. That will be y yoga works for you it keeps the mussels loose so keep it up.
 
S

samantha

Guest
I have loads of added extras the joint pains, kidney stones, gallstones, headaches and dry skin, ooh the joys of CD. x
 
K

Kossy

Guest
I think of Crohn's disease like if you were to buy a new set of tires. They quote you at one price and when you get the bill you get all these "extra" cost, like for value stems, balancing.. and so one.

My only really big extra I have is Raynaud's syndrome. I was told from doctors at UofM that a lot of their Crohn's patients suffer from this as well doing the winter time.

I don't remember signing up for having numbness in my hands and feet when I got Crohns!

And for anyone else that thinks my first paragraph sounds familiar here's a clue...
 
V

Valentina

Guest
not sure how Crohn's related any of it is, but my list:

kidney stones
high blood pressure
PCOS (poly cystic ovarian synrome.. sp?)
low potasium (heart issues)
crankyness lol
 
kc0eks

kc0eks

Valentina said:
not sure how Crohn's related any of it is, but my list:

kidney stones
high blood pressure
PCOS (poly cystic ovarian synrome.. sp?)
low potasium (heart issues)
crankyness lol
Click to expand...
Crankyness is definately related! :D
 
S

scottishgirl

Guest
oh i get the joint pain, i also pull muscles really easily and bruise a lot too, i only have to brush past a door and im bruised!
 
cookey

cookey

Mama Crohnie
Pretty much the same as everyone else. Aching or sore muscles/joints, Anemic, Bloated, like you Scottish girl I bruise very easily, Nauseated, Kidney Stones, Low Iron, Fatigued, and even a little Biatchy at times, lol.
 
R

rhiannonctr

Guest
Well, I logged in tonight to find out if anyone else suffered joint pain because this is a new one for me--and I guess I have the answer to that one. I've started keeping pain pills by my bed; I have to set my alarm for a half hour before I get up and take a pain pill so that I can get out of bed without crying. Ugh! To be perfectly honest my fistula was less painful than this!

I've had Crohn's for about 20 years now and up until last year I just had the occasional non-obstructive swelling and cramping, but since November '04 I've added several obstructions, joint swelling, swelling in my left eye--and herpes in my left eye caused by my Imuran-suppressed immune system:( ! Oh, and add extreme fatigue! At least the insomnia has stopped since I've been able to go off prednisone since my resection.

I'm finding out all sorts of interesting stuff after 20 years!
 
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C

cagfire

kc0eks said:
I forgot to mention my other biggest problem. Its interesting when you have so many you forget about one of the major ones.
I had to look it up just now since i can NEVER remember how to spell or say it.
But I also have Hidradenitis suppurativa..now since that is so odd sounding here is the wiki on it:
http://en.wikipedia.org/wiki/Hidradenitis_suppurativa
Click to expand...
Wow, I had a look at this and it is totally ugh! How the hell have you coped with this as well as crohns...omg you must be so worn out most days.
 
M

Mickeyg

Guest
I also have some of the normal side-effects - anemic, low on B-12 and blockages. I never noticed joint pain though.

Anyalee - I keep stress in my shoulders/neck also and they get real tight and uncomfortable. I find that an occasional deep tissue massage and a chiropractor works it out. I also think they get tight from a bike accident I had about 10 years ago where I sprained my right shoulder and that's where I predominantly have the problem.

Mickey:sun:
 
kc0eks

kc0eks

cagfire said:
Wow, I had a look at this and it is totally ugh! How the hell have you coped with this as well as crohns...omg you must be so worn out most days.
Click to expand...
Well that condition has its flare ups also...and im getting one right now. It sucks, but there is little I can do about it. And yes, I am SO worn out nearly all the time!
:thumbdown:
 
J

Jimbo

Guest
I have had a few added exters fistulas, mouth ulcers and swallon shins.
I seems to be in remmision at the mo so I am hoping to keep it that way:)
 
K

kitty

Guest
i have rheumatoid arthritis and scleritis-nearly lost the site in my left eye because of it last christmas-thankfully caught it in time....as for the joints well....tramadol is good-i'm on azathioprine but not taken it for the full 3 months yet so it isnt fully working-hopefully the joint pain will ease off,,,

it will-wont it?lol!
thats what i like about this disease-always keeps us guessing and always has a surprise for us!
kitty
 
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