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I know, I'm being extremely stupid..

I feel extraordinarily stupid and vain and selfish and immature.

The day I got diagnosed, my dr gave me an rx for prednisone. I told him I wanted to wait until the biopsy was back, so I know for sure. When I got the biopsy back, my other dr (assistant professor of medicine, IBD clinic, ooh lala) gave me an rx for imuran and pred. I express my deeeeep concern for the side effects of pred. He asked me if I was generally a moody, or angry person. Holy mother, yes I am. I have the worst temper of anyone I know. He explained to me that pred will pretty much magnify this in me. I'm already dealing with that, due to my birth control. It makes me craaazy. He actually told my boyfriend that he needed to be very, very careful around me while I'm on pred. I asked him if I HAD to do the treatment, and he said unfortunately, my crohn's is so severe that if I don't do the treatment, the next step is surgery and a bag. So here's my pickle.

During this flare-up, I have lost a pretty large amount of weight. I have always struggled with my weight, always. I really love my body right now, even though its the product of disease. I know steroids make youu gain weight in most cases. I feel like I'm being really vain and immature about this, because I haven't started the treatment yet. I'm also terrified of vomit. It's probably the worst thing that can happen to me, in my eyes. And he told me imuran sometimes makes you nauseaus and pukey. I'm facing a really big decision at the moment. Do I go on the treatment plan, possibly ruining my body, my mind and my relationship? Or do I figure out another way to deal to deal with it? The side effects aren't the only reason I'm not taking them yet. The dr also gave me an rx for entocort, because apparently it has less side effects. But entocort is very expensive, and I don't have medical insurance. I've applied for it, but it takes three months to take effect.

I know what most of you are going to say. Take the damn drugs and deal with it. I'm probably going to. I'm just trying to grow the balls to do it.

On another note, I am taking percocet for the pain, which, as you know, makes you constipated. It was nice at first, because the diarrhea stopped, but then it stopped altogether. Fearing an obstruction, I stopped for a couple days. I just sat on the toilet for half an hour, passing a 5 pound shit baby. It was literally as big (length and width) as my forearm. I am in so much pain. And I have a wedding to go to today. I'm considering buying one of those inflatable donuts. Dear lord.
 
Don't think you're being immature and stupid. It's normal to go through a stage like that when you're first diagnosed. Let's take your concerns one at a time and see what can be done.
1. Moods on pred. You could try asking for another med to keep to calm, such as amytriptilline (others on here have used it for that). And if you are going to have side effects like that, you should have them fairly early on, and could theoretically come off the pred again. It may be tough for you and your boyfriend, but just remember, it ain't you, it's the drugs!
2. Weight gain. Again, this is usually a temporary thing, once you're off the steroids you should be able to lose the weight. I lost mine in a year without actually trying, it just happened once I stopped craving junk and could exercise again.
3. Vomiting. I know exactly where you're coming from, I have a phobia of other people vomiting, and vomiting myself is one of the worst things that can happen to me! But I am taking Imuran, and I didn't puke once (felt like it a couple of times though!). If you build up your dose slowly, split your dose through the day, and always take it after a meal, you should be OK. You could ask your doctor for anti emetics just in case.

Hope that puts your mind at ease a little!
 
I'm with Rebecca. I know exactly how you feel and I don't think you're being immature.

My self body image got so bad at one point from my weight fluctuating so much over the years from being on pred, that I actually preferred being unwell and thinner. But that's another story.

Just remember that it's certainly not guaranteed that you are going to get these side effects. Sure, I put on weight and was continuously hungry on pred, but I slept as well as I did off of it and my moods were no different. Some people have some side effects and not others. Some lucky people don't seem to notice any at all. I certainly didn't notice any side effects when I was on Imuran.

But you always have to weigh up the risk/benefit of taking any drugs. Maybe try taking the drugs for a trial period and see how you are on them and how you feel, both mentally and physically. You never know, you may be pleasantly surprised.
 

Terriernut

Moderator
Believe it or not...pred doesnt make me gain weight. Ok fellow crohnies, just shoot me. If you are THAT hungry on pred...YOU choose what to eat. You dont HAVE to eat a fatty meal to fill up. You can also excercise. What you MAY get is some water retention and swelling. But...that's only if you are on it for some time. You dont have to stay on it for years, what you need is to control the flare you are in.

Now...I'm gonna tell you to put your big girl panties on. Because if you think pred ruins your body...you should see mine after I was cut open like a xmas turkey and got a stoma for xmas this last year.

Not trying to be mean, but dont let it get out of hand like I did. It WONT go away on its own, trust me.

:hang:
Misty
 
I'd have to respectfully disagree.

Drgus such as pred can and do interfere with the human bodies metabolism. So you could be a gym bunny eating salad all day and still gain weight on these drugs.

Back when it was thought I had IBS I was on a low dose anti-depressant which had the same effect. I didn't make any changes to my diet but I still gained weight and my own GP said it was the drugs. When I lowered the dose in half I lost 3kgs/7lbs in a matter of 2weeks! And steroids such as pred can be much harsher (as another said, it's what could happen, not what will).
 

Terriernut

Moderator
See, I knew that would get me a disagreement. I dont gain weight till AFTER I stop pred. Every time. Maybe I'm part vulcan? Dunno. But I am not kidding.

What I do worry about is she says she has a short fuse now. Pred does make it worse. I would worry more about that than gaining a bit of weight. On pred I've run people off roads, thrown a sink and faucets across a B&Q and generally created mayhem if let out of the house. I'd rather have gained a few pounds believe me!!!

Misty
 
I also have a very short fuse. I have done things like Misty, without even being on pred. The pred made me no worse, in fact I was more likely to just dissolve into tears than get mad!
 
Well this is what I mean about drugs affecting people differently in regards to side effects. There's no way you can really predict which ones you will or will not get.
 
Well, I find it hard to disagree with Misty on the subject of weight gain when on pred. I couldn't put an ounce on weight when I was on it before my op in feb. Interestingly, I was managing pretty well before they put me on it in Sept last year. After that I lost nearly 2 stone and despite eating pretty well it was impossible to gain anything back. Luckily for me things improved after my surgery...
 

Jennifer

Adminstrator
Staff member
Location
SLO
Believe it or not...pred doesnt make me gain weight. Ok fellow crohnies, just shoot me. If you are THAT hungry on pred...YOU choose what to eat. You dont HAVE to eat a fatty meal to fill up. You can also excercise. What you MAY get is some water retention and swelling. But...that's only if you are on it for some time. You dont have to stay on it for years, what you need is to control the flare you are in.

Now...I'm gonna tell you to put your big girl panties on. Because if you think pred ruins your body...you should see mine after I was cut open like a xmas turkey and got a stoma for xmas this last year.

Not trying to be mean, but dont let it get out of hand like I did. It WONT go away on its own, trust me.

:hang:
Misty
I agree completely with everything said. The weight you'll gain is water weight as Prednisone does make you retain water depending on the dosage. When you stop taking the medication, the weight should come off on its own. You can easily watch what you eat and how much especially. Try to eat smaller meals more often (~6 small meals a day and protein tends to make you feel less hungry so keep that in mind).

You DO NOT want surgery. It's not fun and if your belly is as cute as mine was, you'll probably regret not taking the meds ASAP.

Yes the side effects are scary but this is your LIFE we're talking about here. Many people think that you can't die from Crohn's but when left untreated and if its really bad, then yes you can unfortunately.

You can do it and your relationship sounds strong based off of you mentioning your temper already. I think he's willing to stick it out and just wants to see you get well. Many things are more important than how you look for a few months. You can get through this. :thumright:

Edit: I'd like to add that if the Crohn's affected us on the outside, I highly doubt many people wouldn't treat it (say we had festering sores on our skin etc.). Cause when you can't see it, its easy to wonder if you really need the treatment or put off treatment etc. I think many of us need to basically accept the fact that we are ill and DO need treatment and sadly this is the treatment we have available to us today since there is no cure.
 

ameslouise

Moderator
Just wanting to echo what Misty et al. say above. There's no guarantee you are going to gain weight, or get moon face or insomnia. I got none of those. As Misty says, you choose what to eat.

I started on 40 mg of pred and was there at 40 mg for three months. During this time I lost about 20 pound, simply from changing my diet - I cut out all processed food. I did this to try to get healthy and also to avoid the weight gain from pred.

I did have horrible mood swings and I started on Celexa to combat that. It helped a lot.

I did like being super skinny, too. I loved it. But you know what I love better - BEING HEALTHY!

As for the Perkies, if you need them for the pain, balance out with a stool softener.

Good luck. I hope you end up following the recommended course of treatment. I resisted the pharma drugs myself for a long time. If I hadn't, I might not be sitting here shitting into a bag as I type this. Just something to think about.

- Amy
 
I still have these arguments with myself after 5 years of being on both Imuran and pred. I was the skinniest I have ever been when I was sick and I secretly LOVED it, people would compliment me on how good I looked and how much weight I had lost - if only they really knew. I've missed taking my medication a few times and I soon came to realise just how much the pros outweigh the cons. You forget just how sick you were, I started on a high dose of pred and could not stop eating. It was the snacking that got me, the conbination of pred and that fact that I was feeling better than I had for years that I ate. I say just be aware of the possible side effects and deal with them if or when they happen. I didn't notice any changes in myself emotionally until recently, so it does effect everyone differently. I say give them a try and you can always stop if your not happy with how they are effecting you. Your partner will understand, they only want to see you get better and if they cop a crazy outburst whilst your trying different meds then I'm sure they'll get over it.

Good luck!
 
ahhhh thank you guys. I had a really, really bad day today so I needed to read all that.

I went to a good family friend's wedding, and I spent most of the time on the toilet in my parents hotel room. the rest of the time was spent explaining to everyone that no, I don't have an eating disorder, I'm this skinny because I'm sick and all I can eat is rice and soup. I had a burger last night and I think it tried to kill me from the inside out.

I realized today that I can't live the rest of my life like this. I can't miss all these important events just because I can't stop shitting and my ass is bleeding. I'm gonna go on the drugs. As soon as I can afford them lol.

So thank you all for your posts and your advice. It helped me realize that, although I'm very sick right now, it could be alot worse, and it could also be alot better. So I'm gonna make myself better.

:ghug:
 
25times, just remember, when you take Prednisone make sure you take the max dose you can of Calcium. That is one side effect that DOES effect everyone. The breaking down of the calcium in your body. It effects everyone at a differant rate, but it does effect you.
I was on 3 month regiments of Prednisone 6 times over a 3 yr period in the late 80's. I didn't realize the seriousness of this side effect until it was to late and I had to have my teeth pulled because of it. My own fault because I didn't take it serious and never took a Calcium suppliment.
I did have mood swings while on the Pred, but due to other meds that I was on I can't say it was all the Pred. I did gain wieght, but then again I was down to 118 lbs from 160 so the gain wasn't so bad for me. Hard to believe at one time I was the same wieght as my wife. lol

Good luck with your treatment and if you have any problems just pipe right up and talk with us, we'll be here.
 
Prednisone had some interesting effects on me. First couple times I became quite aggressive, very unlike me. Appetite went through the roof. I didn't mind this because I had gone from 175 pounds of muscle down to a fairly weak 140, so eating two steaks a day seemed like a good thing! I also got pains in the middle of my back. It seems like now all I get is acne that lasts about half a year. Having been through 6 surgeries, and even with how little effect it has now, I would still take it if someone told me it might work. Wouldn't give it a whole lot of time to do anything though.
 

Terriernut

Moderator
ahhhh thank you guys. I had a really, really bad day today so I needed to read all that.

I went to a good family friend's wedding, and I spent most of the time on the toilet in my parents hotel room. the rest of the time was spent explaining to everyone that no, I don't have an eating disorder, I'm this skinny because I'm sick and all I can eat is rice and soup. I had a burger last night and I think it tried to kill me from the inside out.

I realized today that I can't live the rest of my life like this. I can't miss all these important events just because I can't stop shitting and my ass is bleeding. I'm gonna go on the drugs. As soon as I can afford them lol.

So thank you all for your posts and your advice. It helped me realize that, although I'm very sick right now, it could be alot worse, and it could also be alot better. So I'm gonna make myself better.

:ghug:
Samantha, you ARE going to get alot better!!!! Besides, you need to enjoy your life! And you WILL!!! And being the nutter that I am...pred can give you tits. Yes...tits. You need them. LMPO!! Honey...get better soon so you can give more smart ass comments. You need energy for that. Trust me...I could use my mojo back. You'll get yours back. Then get on some maintenence drugs and go kick some ass.

Misty
keep us posted!!!!
 

Terriernut

Moderator
We all need tits Amy. Thank goodness for Victorias Secret. Boys...stop watching. I figure once I get my tits back I could kick ass again. It always worked for me before!! :ylol: I reckon it would work for most of us girls again!!!
Misty
my girls are missing their mojo...girls....girls.....come baaaackkk.......
 
OMG, I knew this was the right forum... thanks for a much needed chuckle seeing as I am in a major flare up and off for vacation in 3 days... Prednisone is not my friend, unfortunately, b/c it works wonders for many. My work partner actually referred to me as "Moon Face" and he was lucky I didn't have any sharp objects within my reach. I was like the energizer rabbit, vacuumed @ 3 AM (for some reason that pissed off the family...) would get on the computer and answer work emails and then get the comments: "What r u doing up @ 3 AM?" I'd lie and say the clock on my puter was broken. I did hear my Mom tell my husband to remove any sharp knives from the house... luckily I loved her and didn't go after her w/one...
Seriously, you deserve a much better life! Whatever it takes to get you into remission at least try it. I did love being thin (although @ one point there was a rumor that I had cancer... people told me outright I looked like shit. I wanted to tell them how close they were to the truth.)
We are all a bit vain but look @ the alternative. I've missed out on so much, but not anymore. If it takes a bag (which looks like it may) so be it... I want a full rich life and want that for you as well!
Keep us posted! :) Jan

:poo:
 

ekay03

My dog has hands!
when I was on pred, I had to duct tape my refrigerator shut just to keep me from sleep eating!
 
hahahahaha, yes, we all need tits. Makes life alot easier at times.
Fortunately, although I have lost alot of weight, my boobs seem to have stayed the same. My boyfriend is QUITE happy about that lol.

I've been lurking this website almost constantly. I am so glad I finally found people who can talk about poop, buttholes and other "gross" stuff. , without the lame embarrassment and shock.

I emailed my GI today kind of in a panic because my eyes look like ive been writing sad poetry and crying blood. He's actually out of the country I guess, but he emailed me back anyways, to get my phone number. I'm expecting a call from him tomorrow. Can I just say I love him? I hate most doctors, much like alot of you, but I'm glad after all these I found one who really cares and listens.

I also talked with my mom for a while today, and she brought me back down to earth. I have been over-thinking and over-reacting to this. I know I'll be ok. You guys have assured me of that as well. I hope I get a chance to give you guys some good advice too.

Still haven't started the drugs, only because I can't afford them. I'm hopefully going back to work this week. I'm a private bartender/entertainer (not a stripper lol) for corporate events/bachelor parties/birthday parties. I like my job, but it's hard to be pleasant and sexy when you sharted three times that day. But I'm trying =)

Have a great week everyone. May your guts be pain-free and your shit be solid!
 

AndiGirl

Your Story Forum Monitor
You are not being stupid. Crohn's, medications, side-effects are all things that can be very unsettling. Like you, I absolutely hate to vomit.
 

Entchen

Chief Dandelion Picker
Hi Samantha: So sorry you're feeling poorly. I'm also sorry to post somewhat off-topic, but I wanted to give a bit of info on the off chance you aren't familiar with this: Alberta has an insurance plan for people without health insurance (or people with crappy insurance). It's called non-group insurance. It's administered through Blue Cross, but it is not a Blue Cross plan. Cost is about $60 per month. You pay either 70% of the cost of a medication or $25, whichever is higher. The cost for Imuran, Entocort, etc. is much less than it would be with no insurance, especially if you fill 3 months at a time. Still not super cheap, but wow do I ever wish other provinces (*cough* the Maritimes *cough*) had this plan.
 
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yeah I was going to apply for that but I thought it was completely stupid that they bill you monthly from the day you get accepted, but you can't use the insurance until the first day of the fourth month.

I'm only supposed to be on these pills for three months, so regardless, I would have to wait. I'm just gonna buy them myself as soon as I can.
 
yeah I was going to apply for that but I thought it was completely stupid that they bill you monthly from the day you get accepted, but you can't use the insurance until the first day of the fourth month.

I'm only supposed to be on these pills for three months, so regardless, I would have to wait. I'm just gonna buy them myself as soon as I can.
Alberta Blue Cross is so worth it. What if you need something like remicade someday? It takes 3 months to take effect. If you need remicade you likely will not have 3 months to wait for it. If I would have had to wait 3 months, I would likely not have a colon right now. It will come in handy to have. I hate to say it but its extremely unlikey that you will only need pills for 3 months out of your entire life. This disease is forever.
 
Yeah, that's what scares me. My doctor told me I had to get it because this is lifelong, no cure, lots meds, ect..

I already have alot of bills, car insurance, rent, phone, visa.. everything just swallows me up in a stressful panic. I don't have any debt yet, but I don't make alot of money. I still want to go to school, get a career, get married, have kids..

I don't know if I can afford all this. I miss a few phone and insurance payments every couple months, and I'm late on the rent almost every other month. I'm trying sooo hard to keep everything afloat. I know I'm extremely, EXTREMELY lucky to live in canada and have "free" healthcare. I don't pay for dr or hospital visits, tests, and any medication administered in hospital. my GP is amazing for giving out free samples. He just gave my boyfriend almost $600 worth of free asthma meds. Next time I see him I'll ask if there's anything I can do.
I will probably end up getting non-group insurance through blue cross. I'm just feeling really stressed out and also kind of left behind. I don't have any sick friends, or anyone who has to deal with crap like this. They just get to party, work their retail jobs and bitch about it, live with their parents for next to nothing..
I've bought and paid for everything I have. 2 cars, my little condo, all my furniture, all the schooling I've done so far. I feel like I'm constantly being shoved forward into adulthood, when I just want to sit back and enjoy being 20 for a little while longer.
 
Yeah, that's what scares me. My doctor told me I had to get it because this is lifelong, no cure, lots meds, ect..

I already have alot of bills, car insurance, rent, phone, visa.. everything just swallows me up in a stressful panic. I don't have any debt yet, but I don't make alot of money. I still want to go to school, get a career, get married, have kids..

I don't know if I can afford all this. I miss a few phone and insurance payments every couple months, and I'm late on the rent almost every other month. I'm trying sooo hard to keep everything afloat. I know I'm extremely, EXTREMELY lucky to live in canada and have "free" healthcare. I don't pay for dr or hospital visits, tests, and any medication administered in hospital. my GP is amazing for giving out free samples. He just gave my boyfriend almost $600 worth of free asthma meds. Next time I see him I'll ask if there's anything I can do.
I will probably end up getting non-group insurance through blue cross. I'm just feeling really stressed out and also kind of left behind. I don't have any sick friends, or anyone who has to deal with crap like this. They just get to party, work their retail jobs and bitch about it, live with their parents for next to nothing..
I've bought and paid for everything I have. 2 cars, my little condo, all my furniture, all the schooling I've done so far. I feel like I'm constantly being shoved forward into adulthood, when I just want to sit back and enjoy being 20 for a little while longer.
Hugs, I have been there. I have been on my own since 17. Its a lot to have on your plate. Would your mom or dad be willing to cover your bluecross to ensure that you always have coverage? I would talk to them. I would give that to my baby in a heart beat.

FWIW, I finished college, travelled, got married and started a family, so its possible to move on with life and have crohns. Just a lot of unexpected stuff happened a long the way.
 
Unfortunately, my parents are not well off in the financial sense. I know they would help me without question if they could, but they can't. They support me in every other way though, and that's all I need.

I have no doubt that I'll be able to live a relatively normal life. Right now, I'm not well. But I know it will get better eventually. Of course there will be some bumps in the road. But I've dealth with this for 14 years already, I'm sure I'll be ok.
It's SO incredible to me, all the people on here that have gone through multiple surgeries, fistula's, obstructions, and all the other horrible things I have yet to experience. It's mind blowing how positive everyone is and how supportive they are. It gives me so much hope.
 
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