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Posted 5/18/2008 8:47 PM (GMT 0)
I think the prednisone is probably effecting my moods... The other day, I was doing my dishes... and then, I just got... really irritated all of a sudden... and I have no idea why... I just felt angry...

And then... I woke up this morning... feeling like crap... My hips and my lower back were bothering me... and I was having some tummy pain (No cramping, at least... just the sharp stabbing)... And I just laid there thinking how much it sucks... and how I shouldn't be feeling this way... I'm going on 20 years old... :(... I should have more energy than I do... But I feel so exhausted all the time...

I should be glad that things aren't any worse than they are... And I am glad that I'm having some improvement...

Just... wish I could be completely better... Wish I didn't have this disease at all... *And I wish all the aches and pains would just go away. It's just ridiculous... I mean... I've actually had the hip pain and lower back pain for a pretty good while... since 2006... couple months after my diagnosis... but I just pushed it aside... Thought I was wearing my pants too tight or something... or I was just imagining things... And I really don't want there to be something else wrong with me... But lately, maybe because of worrying about my health and everything... I've been thinking that maybe there is something wrong... especially since... the beginning of this year... the pain in my hips and lower back has been getting to be more bothersome even though I've been wearing different pants... and now it's not just limited to my back and hips. There's some minor pain with my shoulders, elbows, and wrists... But it's not as bothersome as my back and my hips... and my knees... and my ankles...

(Especially my right ankle... I think I might have injured it or something at some point because I had slipped and fell on some ice... in February, I think. Sometimes, when I step down from off a sidewalk or something, that ankle will go out on me and it'll be really painful. And sometimes, when I'm walking, it'll be really painful, too. I don't think it's broken because if it was broken, I'd probably have a hard time walking all the time. I probably should've gotten it checked out the moment I slipped on the ice... but... I didn't want to miss school...)

... :(... With all the prednisone I'm on... and having been on it for such a long time, I suppose it really wouldn't surprise me if there was something wrong with my bones... *I haven't been off of prednisone since I've been diagnosed... in November 2006... I've been on different dosages... Not always a high dose (for a few months I was down to just 10 mg a day).. But I have never once been off of it completely...

 

Posted 5/18/2008 9:04 PM (GMT 0)
hang on Celey. Prednisone and this disease itself can both truly play with our moods. When I was on prednisone, I'd be sitting at the kitchen table with my family and laughing and then I'd just cry and cry. Sometimes, I'd be out with my boyfriend (now my husband) and I'd just freak out--panic like. You begin to recognize these things and can learn either to go with it or find a way to work it out of your system. For me that was taking a walk or screaming in a closet--depended on how rational I felt.

You might want to tell your GI about all these bone/joint pains. Sometimes they are due to the prednisone, sometimes malnourishment, sometimes something else. When I was in my early 20s on a prednisone, I did see an ortho doc a few times. My knees and ankles used to give out big time. I did find that MSM and glucosamine chondroitin helped. Lately for me, it's lower back pain and charlie horses in my feet.

This disease does get us down. Man, I'm there myself right now. So darn weak, it's taking me an entire day to get off the couch and go to the grocery store! :-)


Hang on Celey!!!! I'm with you today!!
Posted 5/18/2008 9:49 PM (GMT 0)
(((HUGS))) I'm feeling like that too. Pretty much mourning the person that I lost, the person I should be. How I shouldn't even be worrying about my health at 30, and here I've been dealing with this since I was 20! The pred is definitely not helping my moods of course. One minute I'm fine, the next I want to cry. The next I feel just aggitated. Then I'll get a burst of engery and be off and cleaning something. Just odd.

I'm still worried about swelling. Check my lips all the time, my fingers, hands. feet. I'm sick of worrying about swelling up. So far I haven't swelled since May 2nd. So I'm assuming my meds are working. But with me tapering now today, I'm scared that will come back. I can almost deal with the stomach side of the flare, but that swelling up like that is just darn right scary. Especialy my lips!

It just stinks. So while I have no good words of advice, just know your definitely not alone!
Posted 5/18/2008 11:05 PM (GMT 0)
I've told my GI... but... he didn't really pay attention... or seem to care much about it.... *I'm have a primary care doctor appointment Tuesday... I'm going to talk to him about all that...* I've been taking a calcium supplement...


Don't know if it's helping or not, though...


It's good to know that I'm not alone... (Well, sucks, too, in a way... Hate knowing that other people suffer, too... Wish I could do something for all of us...) But... I still feel lonely, sometimes... And I'm still very depressed... Seems like everything is just pushing down on me all at once....


And now my tummy hurts a whole lot... :(.... *Wish my internet at the apartment worked, then I could take something for the pain and could still be on the internet... Don't feel like walking back up to the clubhouse if I go back to my apartment...*
Posted 5/18/2008 11:34 PM (GMT 0)
Hi There, it is hard but hang in there.
As well as Crohns I have ankylosing spondylitis, sacroiilitis. You should Definitely look into what is causing sore joints or if it is just the medication.
Posted 5/19/2008 12:48 AM (GMT 0)
Celey,

I feel your pain; literally! I too have pain in my back and hips. sometimes it's worse than others, but walking seems to help. If I can get out even for a few blocks a day, I seem to feel pretty good, but I don't always make it cause of feeling so crummy sometimes. Maybe try the walking, and see if that doesn't help.

I also get massages when I can afford it, but you have to be pushy with MTs sometimes and tell them right where to put the good stuff, or they end up giving you the standard "club rub".

Have you looked into ENDOCORT? If corticosteroids give you the best results, this is a drug that is at least minimally absorbed into the rest of the body. It's supposed to stay in the digestive tract (though there is research to suggest that this is not entirely true). Prior to Humira, it had been the only drug, other than pred, to give me significant results. Pred is awful stuff, and I and everyone else on this board can probably relate to losing it a couple or more times for no reason. Just remember that we all miss being healthy (those of us that can remember), but I look at my disease as so much a part of me now. I at least have to be thankful that my pain and discomfort have resulted in understanding and sympathy, and has ultimately made me a better person. It just sucks that character is usually forged through hardship. Wisdom and happiness are two characteristics that I think are shared by few people.
Posted 5/19/2008 1:36 PM (GMT 0)
Celey I really believe that each Crohns patient should have a Rheumatologist on board also. Crohns not only affects the intestinal tract, but also our joints. A Rheumatologist will check you out to see if you have inflammatory arthritis or some other form of arthritis. I would talk to your family doc and see if you can get a referral to a Rheumatologist. Gentle hugs to you.
Posted 5/19/2008 3:52 PM (GMT 0)

Definitely see a Rheumy if you can.  Mine put me on Actonel (an osteoporosis drug) to protect my bones while on Pred, and a prescription level of vitamin D.  Apparently, low vitamin D levels are fairly common and can cause a lot of bone pain.  If for some reason you can't see a Rheumy, bring this up with your PCP- s/he can run a simple blood test to check vit D levels, and prescribe something to protect your bones if needed.  Hope you feel better soon.

Posted 5/19/2008 4:59 PM (GMT 0)
I feel for you girl, I have been having alot of joint pain, seen an ortho doc who did an MRI & CT SCAN and a DEXA SCAN, he seems to think that I have osteoporosis. He also wants me to see a Rheumy, I have my first appt this Thursday. I have pain mostly in my knees and shoulders, but I also have it in my elbows, wrists, hands, back, & hips. I HATE THIS DISEASE.....
Posted 5/19/2008 5:33 PM (GMT 0)
Hi Celey,
I'm sorry you are having such a hard time. I have had my Crohn's diagnosis since last fall, and I still have a hard time accepting it some days. I just want the old me back...I've been working hard on trying to change my thinking and do my best each day, but some days are definitely better than others!!
In general, current research is not really in favor of leaving you on predinosne indefinitely. You may want to talk with your GI about the other treatments like 6MP (immuno-suppressives) or the biologics like humira. It also may be worth trying the Entocort, depending on where your Crohn's is located. I also agree that you should see a rheumatologist...you should not have to suffer unnecessarily. I'm an old lady compared to you (49), but if I have learned anything, it's that you have to be your own health advocate....it is worth seeing what you can do to get better control of the disease and the pain. Also please don't feel guilty for complaining....we are all here to get support and to support each other...that's the great thing about this forum. Keep writing and letting us know how you are!
Posted 5/19/2008 9:09 PM (GMT 0)
Yeah... Sometimes, a little bit of walking helps me feel better, too... *Too much walking makes it worse, though... especially for my ankle...* Tomorrow, I see a primary care doctor... and I'm going to tell him about all I've been going through... and see what he says/does... It looks like he's also a doctor of osteopathy... *I know osteo means bone... so... Maybe that'll be helpful, too...*

And... I am on Imuran... 2 50 mg tablets a day... 40 mg a prednisone a day... and Asacol, too...

You'd think with all the prednisone I'm on, I'd be in remission by now... but... I still feel like crap... *I am doing better, as I said... but I'm not completely well... I woke up this morning in awful pain... Tummy and joints...*

I haven't really looked into many other medicines... I hear about them... *I see you guys talk about them on this board...* But I guess I'm just too intimidated to suggest anything to my GI... Afterall, he's the doctor... And he's already told me, that because I'm young, he doesn't want to me on anything too strong...

And... well... I really don't know that much about medicine... I do research on the medicines that I take and everything.... *Always do... I feel uncomfortable putting anything in my body that I don't know what it is and what it's going to do to me.*

Thank you all for your support and sympathy (empathy, really)... I do try to look on the bright side of things... I'm just going through a rough period right now... Probably because of the prednisone and not feeling well... I'll get through it somehow... I don't like feeling so negative...

Posted 5/20/2008 1:23 AM (GMT 0)

Hugs Celey!

I was on prednisone about a month ago and it was hard.  I was so emotional, especially when I started getting off of it.  I would cry at the smallest things and get angry/upset over anything. 

I agree with the others who have mentioned seeing a Rheumatologist. 

I hope you start to feel better soon and they find something that helps you!

Take care,

Indigo

Posted 5/20/2008 3:27 AM (GMT 0)
I too agree that you need a Rheumy..... This disease is so draining. The pain...the worry, the fatigue...it isn't easy on an old woman such as I ( I'm 51 and feel like I'm 80 most days)... and I do remember feeling the way you do at your age. Things wil get better.. You will get stronger and have good stretches of time when things are more on an even keel. Right now, It's very overwhelming, and depressing. Do talk to your dr. about how you are feeling as well. It may be the pred, or the chronic nature of this disease or both...in any case...sometimes some of us need an anitdepressant to get over the worst of it...it doesn't have to be long term....just something to consider. Also when I get really worried and depressed I do two things.... talk about how I'm feeling with the wonderful people here on HW as you are doing.... and I make a conscious effort to distract myself. My daughters are movie fiends, so when I'm not myself, they make a point of renting a lot of funny movies, which I agree to watch (usually kicking and complaining that I don't feel like watching a funny movie) ...but by golly...it works...always seems to lift my spirits for the time being.
I do hope you are feeling stronger, pain free, and happier very very soon .My prayers are with you.
Much love ,
Mary
Posted 5/20/2008 4:07 AM (GMT 0)

I would strongly suggest a Rhume and not osteo.  Osteo's take care of bones and only bones.  Rhume's take care of inflamtion around the bones.  You are on a med for your bones it dosen't take care of what surrounds your bones.  Also is the pain right at the joints or the muscles and joints?  These type of symptoms need to be looked at by the rhume not the osteo. 

Just my opion.  I have Ankylosing Spondylitis. Uveitis (form of arthritis in the eye), Osteoarthritis and now lymphoplasmacytic (NHL).

Shoshanna

Posted 5/20/2008 4:12 PM (GMT 0)
Hey Celey,

Poor baby...I'm sorry you're feeling bad...I had joint pain in my knee and my wrist before being dx'd w/ Crohn's, but I had hurt both of them previously and was told they had arthritis going on.  When I started takeing Azathioprine, though, wow, did the pain in the joiints get bad and then other joints started hurting as well.  After leting all that run out of my system I started mercaptopurine and the same thing happened.  That was terrible, I really feel for you.  Definitely address that first. 

My bigggest symptom up till then with Crohn's was debilitating fatigue, excema and psoiasis. I have had that for years and nothing significant was ever dx'd except depression - take meds and could get off the couch sometimes but was still so tired and drained all the time, so finding the Crohns' was an answer to years of prayer.  One good thing that happened was in October the skin thing led my PCP (she's very excellent) to find I had Vitamin D defiecincy.  Apparently that is being linked to alot of things like Crohn's and other inflammatory diseases.  Maybe you can check into it.

So far I have only been diagnosed Crohn's in January - and I am thankful about this believe it or not - I probably had it for years and didn't know what the &*(^ whas wrong with me.  No energy whatsoever. None. I got a peri-anal abscess in January and found out I had a fistula which led to colonoscopy which led to Crohn's dx. I haven't yet found a prescription med that does anything helpful for me yet.  I am sure pred would help but GI and I don't want to go there. Although the Crohn's dx explains that everytime I have taken it (for poison ivy and sinus infections) I feel like a champ - it probably calms down my whole autoimmune thing - bummer about all the side effects - the mental ones are freaky aren't they?

Just in case you might not be doing this, I just want to share what has really helped me so far is the diet the GI gave me, his suggestion to take a multi-vitamin daily (I take one wiht iron) and I take a calcium/Vitamin D supplement.  Apparently Crohnies don't absorb nutrients well so we need a big boost from vitamins, B vitamins for energy, Vitamin D to fight inflammation.(check out Vitamin D deficiency on Internet - major correlation made between Vit. D defieciency and autoimmune diseasess.). The fatigue is way less. GI also told me to make sure I have plenty of fluids (we tend to be dehydrated and that contibutes to fatigue) and get plenty of rest.  I gave myself permission to treat myself as if I am sick instead of beating myself up b/c I have no energy - shift in mindset there made a big difference.  oh and also I took Metamucil for diarrhea until it went away.  It has stayed away for now which is great.  Tending to my mental health and trying to cultivate inner peace.  Streess - negtive thinking - only makes this disease worse.

This is where I am so far and I feel way better even though I am not yet on any meds per se for Crohn's. 

I hope some of this helps you and I hope you feel better soon and know that we are all here for you.  ((( (HUGS)))))) 

Posted 5/20/2008 4:18 PM (GMT 0)
Newcronie, what kind of diet did your doc tell you to do?
Posted 5/20/2008 4:58 PM (GMT 0)

Yes, please....what kind of diet did your doc tell you?  My husband continues to try to find relief from the Chron's, the chronic pain, the fatigue...

He has been to a rhuemmy, and she does not think he has arthritis.  He has no explanation for his chronic pelvic pain; we have had every test imaginable...

Next stop for us is a "chiropractic neurologist" that his mother swears by...hey, don't laugh, we are ready to try ANYTHING to get some relief.

So, back to the original--what kind of diet does your doc recommend; and specifically what kind of foods are you eating?

--t

Posted 5/20/2008 10:19 PM (GMT 0)
Had my appointment with the doctor today... and I have to say, I feel pretty good about this doctor... He was really sympathetic... and he seemed like he really wants to help get me feeling better... *He is also concerned about me being on prednisone for so long... and he's going to talk to my GI about getting it tapered down... trying something else to get me feeling better...* I had a lot of blood work done... *Can't remember all the blood tests he had ordered... but I know he's going to be checking for other autoimmune diseases... something about B vitamins... lots of different things...*

I have to get some X-rays done... On my knees and my ankles... and also on my lower back... *He did a lot of feeling around... and there was one spot in particular that was painful on my lower back... he said something rather interesting about it... something about something being deeper than what it was suppose to be... said something might be displaced... and it could be what's causing my hip pain, too...*


He said he'll get me any referrals I might need... And he's also going to look into getting me into a Crohn's disease support group... He said he can't promise he'll be able to make me feel better... But he said he's going to try...


Really felt good about the visit, even though, I haven't really learned too much yet... *I'll probably find out everything when the results of my blood tests and X-rays come in...*


As for my diet... my GI doctor did not tell me to do anything in regards to my diet except to avoid nuts and seeds and spicy food... Which I have (I've tried strawberries and other berries, figured the seeds were small enough they wouldn't bother me, but... turns out they do, so I've had to swear off of them, too. Which sucks, because I used to be able to eat a giant bowl of strawberries before I had Crohn's. I loved strawberries) ... Otherwise, I've been going by trial and error...


I know, for a fact, for instance, that I cannot tolerate chocolate... not even just one chocolate chip cookie... *Sends me into horrible pain... and I also get diarrhea really bad...* Really sucks... I didn't want to believe it... I was a chocaholic.... Man, I tried several times... Kept thinking... 'Maybe it's not the chocolate... maybe it's something else...' But... Nope... It's the chocolate... //@.@\\'... Every single time... So... I don't eat chocolate anymore....


I'm lactose intolerant now... Since May 2007... I can tolerate yogurt (with live and active cultures... the bacteria eats a lot of the lactose in yogurt)... Not much else, though... You'd be surprised how much food that knocks out... I've been doing well with substitutes, though... Soy milk... soy cheese... soy ice cream...


I can't eat anything with corn meal in it... *Really irritates my system for some reason... And that also knocks out quite a bit of stuff... particularly a lot of cereal...*


I try to eat healthy (Keyword: Try. I could probably eat a lot healthier, but it's difficult due to transportation restrictions and other problems), for the most part... For one, I don't drink a lot of soda... (Maybe one or two rootbeers a month)... Never have drank a lot of soda...


I've been trying to increase my fiber intake... (Been drinking a lot more water, too, to help) because of my severe constipation problems... I've been eating oatmeal for breakfast... (with honey for flavor and nothing else)... I eat turkey sandwiches... and tuna sandwiches... on whole wheat bread (I check the dietary fiber... if it doesn't say 2 grams or more dietary fiber... I don't buy it...)... I eat pasta salad (avoid the buttermilk stuff, of course)... and soy macaroni and cheese... I eat cod fish with spinach and soy cheese... I make my own pizza with soy mozzarella, mushrooms, black olives, pizza sauce, and pepperoni... Occasionally, I'll have a soy cheeseburger, chicken nuggets (and rice), frozen TV dinners (usually beef, peas, and mashed potatoes)... Shrimp...


I drink a lot of fruit juice (the real stuff... I mean, really... High fructose corn syrup in fruit juice? What the heck, man? If I want high fructose corn syrup, I'll drink soda... Sheesh... :P...)... Herbal tea... Water... Occasional lemonade and koolaid... Soy milk.... Ensure (usually when I don't feel like eating anything, which still happens from time to time even with being on prednisone)... And of course, I have a rootbeer once or twice a month...


I snack on pretzels, Ritz crackers, peppermints, dried cranberries (no seeds in them), banana chips, Activia yogurt, jello, popsicles, pudding made with Ensure... I have the occasional sugar cookie and pack of Skittles when I can get a hold of them...


I've noticed I don't get a lot of vegetables in my diet... I'm going to try and remedy that situation... *Found an interesting recipe online for... Green vegetable stacks? It's like... pancakes... but the batter is made of vegetables! It sounds really interesting... and I always like to try new things... plus, I love pancakes... I have some of those, too, when I can... I make my own batter with Ensure... Really yummy... :)*
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