Got a catscan today...

So, my doctor told me to get a cat scan a few days ago (I called him because I'm always in pain and he refuses to give me pain killers...sure...cat scan, painkillers, yeah, theyre the same thing...)  I was a little confused because I'm getting a colonoscopy in a few days so I didn't know why i needed the scan to check for inflammation I thought thats what the colonoscopy was for....

So I get it and a mere few hours later another doctor from my GI's office calls me and says my whole colon is inflammed (to my knowledge I thought I just had Crohns, I guess it's Crohns colitis now) and it's really bad, etc.  He wants me to be put on Predinisone but as I already have difficulty losing weight and I've been on it in the past and hated it I really don't want to.  (If it's a matter of life and death I would but that pill made me crazy!)  So he's giving me a different steroid thats supposed to have less side effects than pred, and more asocol again on top of the 6mp I already take. 

They still refuse to give me anything for the pain.  I don't go out and I'm afraid to work (I'm a substitute teacher) because of the severe pain and if I all of a sudden have to go to the bathroom while I'm teaching I'm going to be screwed.  My GI keeps on telling me to take this Dicyclomine stuff but it never ever helps. 

I'm also on generic synthroid 'cause my thyroid is all screwy. 

It's like my Crohns is making it impossible for me to lose weight.  I was going to the gym 5 times a week but I've had absolutely no energy and I'm in such pain I haven't made it much the past 2 weeks and when I've have its been a much less intensity and a lot shorter time.  Its also hard to eat healthy now since I have to stay away from fiber so goodbye salads and whole wheat...

It's just so frustrating.  I know I need to get better.  I hate being in pain.  It sucks.  Especially trying to date while having Crohns - oi vey!  But what good is a healthy colon if the rest of my body is unhealthy?  Now I'm afraid the steriods are going to make me gain weight.  I just want to fit into the clothes in my closet...

I guess I'm just venting.  I don't have any friends who have Crohns and my friends/family/coworkers don't understand it since I try not to complain about it too much and I "look" healthy.  When I told a friend/coworker today I was getting a cat scan she asked if I could bring her a bagel at work.  When I couldn't go out last week because I was in pain she yelled at me and made me feel like a horrible person and friend.  When I tell my dad I'm tired and I'm having my thyroid checked out he doesn't believe me and basically calls me a fat cow.  I feel like I'm at the point where I need to just fax these people pictures of my inflammed colon and my crazy abnormal bloodwork.  They're my family though, and my friends...Aren't they suppose to love and support me?

Sorry that this is a stupid post.  I just really needed to let out thoughts somewhere...

Vent away! None of this is easy, and it's so hard when people just don't understand. I don't think anyone truly can understand if they haven't gone through it themselves. Your doc probably gave you Entocort, which I'm on now for the second time for Crohn's colitis- for me, it really works well, and I have just a few side effects, nothing at all like pred. I'm with you on the weight thing, too. I'm slightly overweight, and I actually tend to gain weight during a flare, probably because I can't get out and go for walks, or go to the gym, and I eat a lot of comfort food that doesn't bother my stomach so much. It's really hard with people telling you that you look fine when you feel terrible! And I think most people that make comments don't realize that they're not being supportive. Anyway, sorry I don't have any great advice, but I know what you're going through, and I hope things start looking up soon!

Though I do love my GI, she also is very anti-pain meds. I "stock up" on meds when I get them from the ER or anything else, and keep a backup stash just in case. When I had blood clots in my lungs, my pulmonologist prescribed 60 darvocet and a refill, so I'm good for quite some time now. Sadly I won't change doctors as I've gone through so many and I agree with her treatment style and respect her for her knowledge of this disease. Can you see your PCP and see if they'll prescribe meds? Or do you see any other doctors that maybe would help you out?

I am also overweight. Sadly, my GI has said I should lose weight. So easy for her to say. I can't eat fiber or anything healthy. I've tried diets, and always ended up obstructed, so I've given up. It bothers me a lot that every medicine I've been on makes me gain weight. The last 10 pounds I put on caused me to start getting stretch marks on my upper thighs...EEEK! But I feel like none of it is my fault. Being in the hospital for 13 days with the clots, and being on bedrest caused me to gain about 5 pounds, and then 3 1/2 weeks of pred for the clots caused another 5. There's no easy fix. I feel your pain. Also, like you, I tend to eat comfort food and gain weight easily when not feeling well.

I wish exercising was fun, and I wanted to do it, but I also don't have much energy!

Your post is raw, honest and forthright when it comes to this disease. Sometimes eople, friends and family , donnot understand it so they tend to be fearful and at times a tad ignorant. They can see our pain but they don't know how to deal with it. Everything in you wrote in your post, I have felt. Most of us probably have. At least you are honest with what you're going through and how you feel, that is inspriation for others to be honest. Now yu have a place to talk to others that are going through the same scenarios that this strange and completely unpredictable disease causes. ....When the catepillar thinks it's the end of the world, the butterfly knows it is only the beginning.

(((SarOnThisSite))) I am so sorry you are suffering so. GI's are notorious for not prescribing pain meds. I would suggest you visit your family doc and discuss pain meds with them. Thats what I have to do or I would be suffering as you are. If your family doc is not helpful then demand a referral to a pain mgmt doctor. Hugs!!

Its been a battle, the whole pain killer thing. Its to the point where my very straight laced/goodie two shoes mother will try to get pain killers for me if her friends have dental work and have leftovers, that sort of thing. I understand I fit the statistic of someone who can get hooked, a woman in my 20s. But Ill explain to them how I'll have a 30 day perscription that will last me for years but they won't budge. I've tried switching GIs but haven't been successful finding anyone any better. I saw my primary care sometime this past year for the painkillers after writing here in the forums a year ago and people suggesting the primary care. I even brought my mom thinking she's be a good avocate to me. But, to no prevail. (I do want to try to switch my primary doctor but its extremely difficult with insurance and referrals..i don't want to switch all my paperwork and all that jazz until i try someone out...but it doesn't seem to work that way...) I also tried going to a pain management specialist at somepoint a few years ago to the suggestion of people here but it was the same thing. he had wanted to give me sometime i take daily, not an as needed pain management. I still have a few left over. But, I'm always scared and reluctant to take anything incase its my last one. I feel like a prisoner cause i pretty much just stay home since im too afraid to go out with friends. and i hate that my doctors make me feel like a horrible person because i want something for the pain.

as far as the weight, that's also been a struggle. last year i lost around 30 pounds or so and was finally starting to feel okay with my body. then it slowly came back. my mom always says it seems my crohns always gets bad when im trying to diet and lose weight and that if im a little heavier and my crohns is healthy that should be okay. but its not. its not okay for my crohns to be incheck but for the rest of my body to be a mess. i like working out but like i said i havent really the past 2 weeks sincei ts just been so bad between the stomach pain and the back pain and the lack of energy plus this whole dehydration thing. i mean its not like im crazy huge but im heavy enough. i just want to be healthy in all aspects.

on another note my dad called today. he told me i should try atkins. i tried explaining to him that when my crohns is like this, bland food is soothing for the crohns, things like cherrios or toast or plain pasta. i told him that ive been drinking gatorade to replace electrolites cause im always dehydrated now. he tells me i should be eating hamburgers, eggs, cheese, and chicken. Awesome dad. Just frustrating.

Thanks for the replies. Its nice to know people are going through the same thing.