Looking bad/Prednisone/Crohn's-Please help

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Regular Member

Date Joined Sep 2007
Total Posts : 44
   Posted 12/3/2007 10:45 AM (GMT -7)   
I know it might be really vain talking about how prednisone and Crohn's has affected my appearance, but it's really been bothering me. I've gained about 15 pounds due to prednisone, my face is still bloated, and I always look and feel really tired (bags under my eyes, etc.). I moved across the country right after I was diagnosed with Crohn's, so no one here knows what I looked like before, except for some of my old high school/college friends. Anyway, one of my friends made a flippant comment about how our mutual high school friend asked how I looked and he replied by saying I looked "Crohnsy" and then proceeded to tell me that he didn't want to judge how I looked because of my medical problems. I knew I didn't look super great, but it was especially upsetting realizing that other people thought so, too. I'm finding it really depressing dealing with looking bad on top of feeling physically bad, especially because me and my boyfriend just broke up a couple of weeks ago and I'm going to want to start dating eventually. I just wondered how people deal with all of this. It's hard for me to exercise (even though I'm pushing myself), because I've had some really bad side effects of the prednisone/pred withdrawal, including muscle atrophy, so I can't regain my previous physique as quickly as I'd like. And, my diet is pretty restricted right now, being that I'm a vegetarian who isn't allowed to eat raw fruits, raw vegetables, or nuts. But, I guess I wondered how people emotionally handle all of this. I know I'll look and feel better eventually, but I don't know how to handle it right now. Thanks ahead of time for your replies.

Female, 30. Diagnosed August 2007 with Crohn's Colitis. Asacol 400 mg 12 x day. Canasa, Cortifoam, just finished Prednisone (tapered from 60 mg). Orthotricyclin Lo, Calcium, Trinity (probiotics), and multivitamin.

Regular Member

Date Joined May 2006
Total Posts : 167
   Posted 12/3/2007 11:43 AM (GMT -7)   
I got bad acne on my back and chest, I hate it! Also, my face puffed up too and I gained about 15-20 lbs, and it's gone to my stomach and upper chest area. It is really depressing but it's all from the prednisone which I hate to say. There's no way to work it off from what I heard from others, you can work out and all, but it won't help that much (however it is good for yourself and body in the end). Prednisone gives a fluid retention problem, and I was told eat low sodium foods as eating too much salty foods will make it worse, that's what my GI told me as i'm concerned and won't be off pred till early january. Good times, right? Can't wait til it's over, best wishes! :)

Male DX with CD May 2006 @ age 22, Colonoscopy and SBT
Taking Prednisone 15mg (tapering), Imuran 75mg (eventually 150mg I was told), Atenolol 25mg for fast heartbeat (thanks Pred!)
Have a safe and happy holiday everyone!

Regular Member

Date Joined Sep 2007
Total Posts : 44
   Posted 12/3/2007 12:05 PM (GMT -7)   
Thanks so much. I'm actually off prednisone now (for 3 weeks!), but I still have the puffy face and I'm experiencing what my doctor calls "prednisone withdrawal." Which he said could last from a month to a year. Should I still be on a low sodium diet now that I'm off the prednisone? It feels like I should, because the minute I went off of it my feet swelled up so much that I had cankles (calves went straight into my feet, with no ankles). My doctor told me it stays in your system for a while, but I'm just confused as to how to handle it. I have the acne too, but it's not that bad. The hair growth our of moles was pretty weird, though.
Female, 30. Diagnosed August 2007 with Crohn's Colitis. Asacol 400 mg 12 x day. Canasa, Cortifoam, just finished Prednisone (tapered from 60 mg). Orthotricyclin Lo, Calcium, Trinity (probiotics), and multivitamin.

Regular Member

Date Joined Dec 2006
Total Posts : 244
   Posted 12/3/2007 12:32 PM (GMT -7)   
Hi LME -
Hang in there. i think at last count I am up to 30 pounds and facial hair! I have lost count of the months I have been on the prednisone, soon as I taper down I have to go right back up. I am currently on 30mg a day and no taper in sight until my flare is controlled.

MMAC, Wife & Mother of 3 (14, 13 & 7) - Diagnosed w/CD June05 (terminal ileum)

Asacol (9 daily), Imuran (150mg), Prenisone (15mg), Cipro (1000mg)Lunesta (3mg), Phenergan (when needed) - Remicade as of 7/24

Becoming undone
Veteran Member

Date Joined Jul 2007
Total Posts : 927
   Posted 12/3/2007 2:15 PM (GMT -7)   
LME...cyberhugs to you. I can empathize...prednisone works great on the disease, alas, HORRIBLE side effects. Prednisone has ravaged by body too. For a while I could not recognize myself in the mirror, face was sooo puffy. It rearraged my body, gained weight, I lost over 1/2 my hair...and that was just the good stuff.

You've also had soooo many changes, you've moved, lost a boyfriend and going through your physical ailments. I hope this forum helps you in some ways (it does me). You are not alone...Sometimes you will need to unload, we're always here...Again, cyberhugs to you.

Regular Member

Date Joined Sep 2007
Total Posts : 44
   Posted 12/3/2007 3:30 PM (GMT -7)   
Thanks so much. This has definitely been a pretty bad period for me and I'm really thankful that a forum like this exists. I'm trying to stay positive and recognize that this is all temporary, but it's hard, especially when I run into people from high school on the street or meet a new person and I can't say to them, "You know, I'm usually a lot hotter than am I now...it's my Crohn's" or "I'm not actually a heroine addict, the tremors are from prednisone." I wound up having to tell more people than I wanted to tell, because I can't drink and I was having tremors and I'm on this restricted diet. about half of my friends just stopped talking to me once I told them what was going on. I don't know if people are just scared of disease or they feel uncomfortable and don't know what to say, but I it was really upsetting to me. My now ex-boyfriend ignored me for a week after I was diagnosed with Crohn's and he's a psychiatry resident who graduated from medical school! He said it was just too upsetting for him to see me that sick...I guess it's good he's my ex-boyfriend. Anyway, that's my rant, which turned into something completely different than the original thread, but I guess I'm upset about so much right now that it's hard to disentangle what part bothers me the most. Thanks again everyone for your response. -Lauren
Female, 30. Diagnosed August 2007 with Crohn's Colitis. Asacol 400 mg 12 x day. Canasa, Cortifoam, just finished Prednisone (tapered from 60 mg). Orthotricyclin Lo, Calcium, Trinity (probiotics), and multivitamin.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 12/3/2007 3:53 PM (GMT -7)   
Hi Lauren Hang in there things will get better in time your body will get back to it's old stuff. I can understand that loosing your boyfriend is probably bringing you down a little but that happens to all of us and in the mean time maybe just concentrate on meeting and making friends. I am on pred. too and I am tired of feeling fet and just a little not my self. You are young and I am sure very pretty it's when your older we get the wrinkles to worry about and grey hair. So enjoy your youth and try to give yourself some time to get things better. lol gail

Veteran Member

Date Joined Apr 2007
Total Posts : 532
   Posted 12/3/2007 4:59 PM (GMT -7)   
Try being 137 pounds, size 6-8, and going to 30# and size 12-14. I had to buy a lot of new clothes. Keeping most of my old clothes because I plan on losing it all. I have dropped 10 # by cutting down on sugar and fried foods. I started at 40 mg in Jan and am down to 10 mg now. (Also on entocort 3 mg, just cut down from 6). I started humira 8 weeks ago and am feeling better. Take care of yourself, I find the more stress I am under the worse I feel. Maybe the break-up will be the best thing that ever happened to you. Good luck.
Diagnosed at age 19 with CD.
3 small bowel resections, 1 for perforation, 2 for strictures 

Regular Member

Date Joined Oct 2007
Total Posts : 390
   Posted 12/3/2007 7:44 PM (GMT -7)   
Prednisone sucks.  I am taking it again (I had to take it last year) and I started at 60 mg - after 2 weeks the dr dropped me to 40 (which I knew I should wean slower but was so anxious to stop the high dose) and am down to 25 mg now.  Does anyone else feel constantly racy & jittery?  It is crazy, I am still taking Ambien to sleep but cannot seem to slooooooow down.  I am trying to do different things to calm myself (yoga, listening to relaxing music, etc) but even with that I feel like "Hurry up to relax".  This is in addition to all the other horrible side effects I know lots of other people here are experiencing as well, it really is too bad that Prednisone is such a double edged sword. 
Prednisone 25 mg
6MP 75 mg
Folic acid
Omega 3-6-9
Tylenol 3

Regular Member

Date Joined Feb 2007
Total Posts : 88
   Posted 12/4/2007 5:38 AM (GMT -7)   
I know how you are feeling, I went through the same thing while on prednisone. I'm normally a very petite girl. I'm 5'3'' and weigh in at about 115. well before steroids anyway. HA. While on pred I was about 130. I know that doesnt sounds like much but to me being a figure competitor in body building competitions that was huge. I had a big hump on my upper shoulders, my face was so swollen I took a picture everyday and sent it to my mom who was living halfway across the world, who was blown away at how my jaw was no longer there, my face was round, bags under my eyes, terrible acne, I wasn't myself anymore, physically and mentally. The steroids made me suicidal because I had lost everything. My mental state was different and I didn't know how to change it. All the doctors just threw more drugs at me. I became depressed. I had moved from Alaska to England. I was dx a 2 weeks after I arrived here, I lost my dream job, the pred caused muscle wasting I lost all my muscles and could barely get out of bed, I could no longer compete in a sport that i loved. I drove my car off the rode in hopes of slamming into a tree. I missed. When I told the doctors about all the mental side effects and physical side effects I was told that they would stop once I stopped taking the medication which I wasn't allowed to do. SO i sought out another GI. He tapered me off the predisone and asacol. I saw a chinese herbal woman who gave me an herbal powder to mix in hot water which tasted awful but he decresead all the water retention and swelling. I've been off Pred since may and my acne has cleared up, my mental state has cleared up. I'm 120pounds so only 5 more to go. I've never had problems rebuilding muscle but since the steroids no matter how hard I train I cant get my body back to the way it used to be. I saw 3 specialist after my inital dx with the military doctors. All agree that I dont have Crohns. I've had multiple scopes, CT, blood work you name it. They all think that I came in contact with a nasty bacteria that ate away at my intestines and the military docs were so ready to jump on the crohns bandwagon because it was the easiest answer to my unexplained sudden onset of symptoms. I was told by my 3 new GIs that it was a bacterial infection that was treated incorrectly with steorids when it could have been cleared up with 10 days of Cipro.  So now my whole life has changed, I'm still battleing with the devestating side effects of Pred and there is nothing I can do about it because Miltiary doctors can not get in trouble for malpractice. If the 3 new docs are wrong and I do reflare, I'm going the alternative route with the liquid diet not steorids.

25 yr old female. Diagnosed with Crohn's on Feb 14th 2007 confined to the terminal ilieum, Asacol, Levsin, Nexium 40mg, Percocet, darvocet, phenergren.

Regular Member

Date Joined Sep 2007
Total Posts : 330
   Posted 12/4/2007 4:53 PM (GMT -7)   
This is the perfect thread for me because I have been feeling gloomy and down -- not sure if it's due to Pred or Pred withdrawal (I'm now on only 10 mg). Very bloated face and swollen fingers and ankles. My CD symptoms are very good but I hate the way I look and feel.

LME -- am glad you're off now and good luck!
Official dx September 2007.
Medications: 6 mp, Pentasa, Prednisone (tapering), Prilosec, Synthroid.
Supplements: probiotics, calcium, vitamin C, vitamin E and a multi-vitamin.
History of hypothyroid (dx 2004), and gall bladder surgery (1997).
44 years old; single mom to three wonderful kids, ages 9 to 15.

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