Got a catscan today...

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Regular Member

Date Joined Feb 2006
Total Posts : 214
   Posted 3/24/2010 4:07 PM (GMT -7)   
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 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...

25 year old female, diagnosed with Crohn's in 2002 after being misdiagnosed with Lyme Disease for a year.  Currently on 100 mg of Mercaptopurine.  Have been on Prednisone, Asacol, and Remicade in the past.

Veteran Member

Date Joined Nov 2007
Total Posts : 4385
   Posted 3/24/2010 6:15 PM (GMT -7)   
There is nothing stupid about your post! I'm so sorry that your friends/family are not more supportive to you! I live in a relatively small town, and I don't have any friends with Crohn's either. This forum has been a huge support to me...hang out with us! Did they give you entocort instead of the prednisone? a lot of people have great results with it. I'm sorry you are in so much pain. Do you think you need a different Gi that believes you about the pain? I know it's hard, but try to focus on getting well and worry about the weight when you get into remission. (hopefully soon!) When I get bad flares, I lose a bunch of weight and I get tons of compliments. Ironically, when I'm in remission and feeling my best, I'm fatter, but I'd much rather feel better than look better. I do have a very supportive husband who much prefers seeing me that helps a lot! Hang in there!
51 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation, probiotics

Regular Member

Date Joined Dec 2006
Total Posts : 177
   Posted 3/24/2010 7:45 PM (GMT -7)   
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!

Regular Member

Date Joined Oct 2007
Total Posts : 390
   Posted 3/24/2010 8:05 PM (GMT -7)   
If your dr isn't giving you anything for the pain then switch drs.  This is a disease that cause intense, knife-twisting-in-the-gut-pain.  If your dr is afraid to prescribe anything then he isn't doing his job.  or at least go to a pain management specialist.
But also, vent away, that is what we are here for on this forum. :)
33 yr old Female
Crohn's Colitis
DX 12/06
Currently on Remicade, Humira, 55 30 mg Prednisone, Multivitamin, Calcium, Probiotics, Vitamin D, a few other herbal supplements my natureopath has me on.
Eating a Macrobiotic diet, no meat or dairy, trying to cut way back on sugar and white foods.  Trying to focus on a more holistic approach to healing. 

Veteran Member

Date Joined Dec 2005
Total Posts : 1768
   Posted 3/24/2010 8:20 PM (GMT -7)   
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!

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!

Veteran Member

Date Joined Dec 2009
Total Posts : 681
   Posted 3/24/2010 9:42 PM (GMT -7)   
If your specialist could feel your pain he/she'd have a different opinion on pain killers! My specialist also doesn't prescribe pain killers but she knows my family Dr. takes care of me for that. I'd also recommend getting another family Dr. that will properly take care of your needs, the pain some of us get would be torture without proper medications and there should be no reason for you to go through that. Perhaps during your next bout of strong pain would be the prefect time to go to the hospital for assesment and pain control? Here's a website that has an article written called "The Spoon Therory" that maybe you could read to friends/family that might get them thinking? idea    Keep on ranting thats one of the reasons were here, keep us informed as well please. Rob

Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.

Regular Member

Date Joined Jun 2008
Total Posts : 78
   Posted 3/25/2010 1:41 AM (GMT -7)   
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.

Veteran Member

Date Joined May 2003
Total Posts : 9448
   Posted 3/25/2010 4:29 AM (GMT -7)   
"When the catepillar thinks it's the end of the world, the butterfly knows it is only the beginning."

What a beautiful thought! I've never seen it before. Thanks, kmf!
My computer says I need to upgrade my brain to be compatible with its new software.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 3/25/2010 6:41 AM (GMT -7)   
(((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!!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Regular Member

Date Joined Oct 2009
Total Posts : 111
   Posted 3/25/2010 2:09 PM (GMT -7)   
I also had this problem. My local GI doctor refused to prescribe pain medication even when I couldn't stand up straight because I was in so much pain. My PCP was horrified by how bad I looked when I went to him in desperation and wrote me a prescription for Darvocet. My new GI doctor, however, is pro-pain medication and has been quite helpful.

Call your PCP. Someone should be able to help you. You shouldn't have to deal with that much pain.
chronic active colitis/possible Crohn's - unspecified IBD
Lialda 2x/day
Entocort 9mg 1x/day
Darvocet or Tramadol as needed

Regular Member

Date Joined Feb 2006
Total Posts : 214
   Posted 3/25/2010 3:35 PM (GMT -7)   
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.
25 year old female, diagnosed with Crohn's in 2002 after being misdiagnosed with Lyme Disease for a year.  Currently on 100 mg of Mercaptopurine.  Have been on Prednisone, Asacol, and Remicade in the past.

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