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Posted 11/12/2009 6:00 PM (GMT 0)
 

Hello,

So I've been off of prednisone for a week after being on it for over 3 months. Thankfully, I'm only going to the bathroom 1 to 2 times a day with solidly formed stool and can't remember the last time I saw any blood in there. Still getting used to talking so openly about my bathroom experiences but that has become the least of my concerns...lol.  I'm 33 years old and have been working out since I was 17. I have always been an ectomorph(difficult to gain weight , easy to lose) so when I was diagnosed in July it made things worse as it makes it even more difficult to gain weight. I weighed 180 pounds and am down to 170 since July. All the weight was lost within the first month and since then always around 170.(for the last 3 months)  I have read that people gain lots of weight on prednisone but this was not the case for me. However, eating chicken breast, brown rice and gluten free bread, sardines and very few fruits or veggies is probably not the way to gain weight. It has kept me feeling good though when it comes to UC. I am also on a long list of supplements( you can see in my signature) and am hoping that now I'm on Prednisone that I can start gaining some muscle mass back. As I understand , prednisone eats away at muscle mass too which may explain my difficulty in gaining weight as I have for many years been a fairly muscular guy. I have worked out about 5 times a week consistently since I was diagnosed(same as before diagnoses). So here are my questions.....Is there anyone who has any advice about how they got back on track with bodybuilding once finished with prednisone?  Also, I am experiencing muscle aches that have gotten strong in the past week since finising pred. I did the proper taper so I don't think it's from tapering too fast. Are these aches to be expected?  Generally, how long do they last? Is there anyone who was able to get the physique back that they had prior to being diagnosed?  I am a very strict and dedicated guy so the advice would be appreciated. I bought a home gym and have been working out hard. I find that I get a great pump and actually look pretty good only to lose it much quicker than before. I'm wondering if that is from the prednisone as it is an anti inflammatory drug.  Bodybuilidng/predinisone experts I need your advice!  Thanks, and God bless everyone. I've realized that there are much worse conditions out there, not minimizing ours by any means, but at least we can enjoy life when we are in remission.

 

Posted 11/12/2009 6:42 PM (GMT 0)
I think your expectations are a bit high for having so recently come out of a bad flare. It will take your body some time to rebound. I am not a body builder but I was an avid hiker/biker/walker who struggled mentally when I couldn't work out due to UC. I also struggled with weight loss and didn't really put weight back on until I had surgery. But that won't be the case with you; it's just going to take more time. As for joint pain, it doesn't matter how slowly or quickly you taper from pred, you can get severe joint pain. For me it lasted a full year but I had been on it for over 2 years. I would expect you to have joint pain for about a month or more after your last dose.

Be patient and be good to yourself.

Sue
Posted 11/12/2009 7:04 PM (GMT 0)
This is not going to be what you want to hear, but here it is anyway.

I have given up. I used to be in great shape before UC. I could run 26 miles without stopping, I could bench my bodyweight, I lifted and ran daily. But then UC got me, and I struggle to complete a 1 mile run. I completely view exercise as a way to make me feel good now and keep my symptoms under control. I have extra weight now, I am about 15 lbs heavier than I used to be, but there is a plus side in that. When I flare again, and I am sure I will. I will have extra weight to lose which will hopefully keep me out of the hospital.

I will never have a model body anymore. But I feel good for the first time in 5 years, and I just need to be happy with that.
Posted 11/12/2009 7:39 PM (GMT 0)
Hey Alan,

I can totally identify. I'm a female, but am an ecto like you who was already thin before UC struck. Oddly enough, I didn't start seriously weight training until after I got UC. Pre-UC, I had done some "cardio with weights" work outs using only light dumbbells. I was knocking myself out and still had people accuse me of having an eating disorder. I've learned alot since those days.

You can rebuild your body and gain lean muscle mass, but you have two strikes against you: UC that compromises your ability to digest and absorb the nutrients you need, and being an ecto, which makes it hard for "normal" people to build mass. Both of these things can be overcome, but you have to learn how to adapt for your circumstances. What works for your healthy mesomorph buddy isn't going to work for you. Don't worry about not gaining weight on pred. If you HAD, it would be fat and not healthy muscle.

Here are the things I'd suggest:

Do everything in your power to heal your gut and improve your digestion. Probiotics to rebuild healthy gut flora, omega3s to reduce inflammation and l-glutamine helps heal the gut AND helps build muscle.

Improve your diet. Increase your intake of protein and healthy fats. Cut out the sugar and junk. Use a food journal to identify foods that are problematic for you and eliminate them. Use protein powders and meal replacement shakes to increase your calorie intake. Eat nutrient dense foods like eggs, nut butters and avacado.

Eat six small meals a day with protein, complex carbs and healthy fat in each meal. Keep the machine fueled so your body doesn't start breaking down muscle. This way of eating is easier on the gut, too. Increase your calorie intake. Most ectos don't eat near the amount of food they should, but do a lot of mindless nibbling of junk that doesn't feed the body properly.

Lift heavy, low rep and only 2-3 times a week with rest day(s) in between. The Gaining Mass program is an excellent place to start. It's a diet and weight training program developed specifically for ectos. Burning yourself out in the gym with endless reps and long workouts is the exact opposite of what an ecto needs. It may work for others, but it won't work for you. Get in, lift hard, get out and EAT for recovery. The GM program uses a three day split: chest, shoulders, triceps;

Cut cardio completely or cut back to shorter, but intense workouts two or three days a week. Don't do cardio in the a.m. on an empty stomach. This is a great way to break down any muscle you're building.

Take heart: you can rebuild your body if you work on rebuilding your digestive health at the same time.
Posted 11/12/2009 7:42 PM (GMT 0)
Regular exercise is beneficial for the bowels as well as the rest of your body...I've been working out (at home as well with home gym) for the last 8 yrs regardless of how active my flare is (I always do at least something) to keep my fit body (and after having 2 kids, I have a fit body). Because of pred causing you to lose bone and muscle mass that makes it even that more important that you do find a regime and stick with it..when pred is causing you achey joints and what have you then simply find other ways (there are plenty of ways to exercise regadless if you have muscle, joint, bone issues) aquasizing is one great example.

Whatever you do, don't give up on exercise, if you do, your body (and your mind) will hate you for it and the older we get the more your body lets you know your aging.

:)
Posted 11/12/2009 7:52 PM (GMT 0)
I used to spend a lot of time running and in the gym but not as much now. Strenuous exercise seems to make things worse for me, so I keep my workouts light. Though I'm still in shape, I'm definitely not close to what I was before UC, but that's fine. Being healthy is more important than looking your best.

I had aches when tapering off prednisone but those stopped a couple of weeks after I had completed the taper. If you're tapering prednisone then you should keep your workouts easy too. Prednisone masks symptoms and can give a false sense of re-assurance when your body probably needs more rest and time to recover before taking on a heavy workout regime.
Posted 11/12/2009 9:50 PM (GMT 0)
Im still on Prednisone so I cant really compare with what you're going through but I workout regularly, 3 day split chest/tri, back/bi, legs/shoulders/abs. I spend about an hour and half in the garage gym and about 30mins on the exercise bike afterwards (heart health is important to me too). Im usually always sore and in pain so who knows if its from pred/joints or just pushing my body hard.

Unlike you Im an endo but the skinny fat type so its very easy for me to gain weight in the gut and in my face (thx prednisone). If you're trying to put on weight, simply put you need to chow down on a lot of food especially carbs. I do take a ton of vitamins, creatine and a preworkout booster (Gaspari SizeOn and Gaspari Superpump 250) and that keeps my energy level and drive up throughout the workout. This is the first time in my life Ive taken weightlifting seriously and have been consistent for over 6months now and plan to stick to it forever.

It really is all in the mind. Eat a ton, sleep a ton and always push your hardest in the gym and youll have huge muscle gains uc or not. I also started working out when I was mid flare and only able to bench 125# x 5. Now I can push up 225X1 so its totally doable to gain strength and mass even with uc and pred in the picture.
Posted 11/12/2009 9:53 PM (GMT 0)
forgot to also mention that before i started working out, I was probably sitting around 22% bodyfat at 180#. I cut down to 15% 170 and now am in the process of a bulk for the winter again. Trying to get up to 200+ while staying near 17-18% bodyfat.
Posted 11/12/2009 10:00 PM (GMT 0)
I never thought aiming for a particular weight was realistic. Now if you are aiming for good health, feeling good, eating healthy, staying in remission...THAT is realistic!

You are eating better now, eating less fat, and it sounds like, less junk. Your weight will fall where it should naturally be, given a better diet. Believe me, tons of guys around you would want to weigh less anyway.

I'm into eating healthy, swimming laps whenever I can, some weight lifting to strengthen my muscles, but very rarely do I check my weight. It's going to fall where it's going to fall.

Glad you're in remission.
-John
Posted 11/12/2009 10:06 PM (GMT 0)
Realistically though if youre serious about gaining muscle mass you do have to set goals and check weight and how much you lift. I mean you might not have to if you've got genetics on your side but the average person definitely isnt gaining muscle mass repping 95# x 5 or eating 2000 calories a day.
Posted 11/12/2009 11:31 PM (GMT 0)
Hello,

I guess I should explain what my workout regimen is like. As I had said earlier, I"m around 170 pounds down from 180. To many with U.C , this may not seem like much of a drop, but I have been working my tail off and eating my face off to stay there. As for supplements, I'm taking alot. I'm still new to this game though, as I'm only three months in. I'm thinking that being able to stay fit while on prednisone for over three months is some kind of accomplishment I guess. Here's my new question. Is it safe to say that it is easier to gain muscle once off of prednisone and generally how long does it take to start noticing the positive differences once off of prednisone.? As for my strength, I am able to bench 225 pounds 4 times whereas I was able to do it between 6 to 8 times when I weighed 180. I do chest/triceps one day, back and biceps another day, shoulders and legs the other day....also do hit the exercise bike for three 5 minute intervals on heavy resistance twice a week(more to build muscle in the legs instead of cardio) Overall, have not lost much in strength but it has been a hell of a ride to do this while on prednisone. Thanks for all the responses so far, and please keep them coming in!
Posted 11/13/2009 1:54 AM (GMT 0)
I was supposed to be in training camp ( bike racing ), in March. A flare put the kibosh on that.

Was in exceptionally good shape prior to the flare. High doses of steroids and blood loss has seriously fu*$ked up my muscle mass and hemoglobin levels.

Now that I'm off the Pred I hope to be back in shape for next season. It takes "ALOT" of work to get back to where I was...they say muscles have a memory, I hope so. I'm back on the bike...just not back in shape...at least not enough to race competitively.
Posted 11/13/2009 2:12 AM (GMT 0)
Jratt I'm sorry to hear that man. Have you ever considered trying VSL #3? I've heard good things about it but I've only been on it for almost a month. It seems to be helping. I know what you mean about Prednisone screwing things up. I just got off of it a week ago and the whole time I was on it, it was difficult to workout and see any results. Well, the main thing is our health, but it would be nice to see a difference when working out...ha ha. Seriously though man, I wish you the best and no matter what don't ever give up. It sounds like a bullcrap statement , but I strongly believe that a strong belief in yourself can help you get through anything.
Posted 11/13/2009 4:10 AM (GMT 0)
Thanks man, I'm on remicade so things have come back to normal but for how long who knows ( taken months to get there). I'm going to give VSL#3 a try as a prevenative measure. My hemoglobin is getting better...was 75 ( adult male should be 135 ), last time I checked in Sept it was at 99. Would be right up there except I don't tolerate ferrous fumarate. Been trying some natural iron supplements from the health food store (Floridax).

Personally, if I had to continue with Pred I would have the colon removed. I told my GI on the last visit that I won't go on it again and to be prepared to cut out the colon should I flare like I did in Feb. I know a number of healthy atheletes with a J-pouch..don't know anyone on Pred:)
Posted 11/13/2009 7:09 PM (GMT 0)
Alan, what's your daily caloric intake? How many grams of protein, carbs and fat? Maybe your diet needs tweaking. Also, are you getting plenty of rest?
Posted 2/16/2010 8:26 AM (GMT 0)
I am a little less than 200 pounds relatively lean. Work out a lot without problems.

Started lifting more weights again recently and gaining fast. I do benchpres around the 225 lbs mark.

I guess I am not that severely hit by CU yet. Have had it for 10 years, but not on Pred. etc. yet.

Anyway for me, I have not felt physical constraints.

I do however sometimes wonder if some of the parameters related to working out can cause a flare in itself, lige e.g.

- Protein powder? Is concentrated protein like that a potential flare causer? Many protein powders a Milk/valle based aren't they. I eat pea protein when I eat that stuff

- Eggs? Are many eggs a potential flare causer?

- Excessive training? Is heavy lifting and 45 minute crosstrainer workouts over the edge? Can to much training stress the body and be a flare causer?

 

Posted 2/16/2010 12:32 PM (GMT 0)
Hey

I'm a qualified Personal Trainer. At beginning of UC I was marathon training and doing loads of weight training. I was ok until went back on Pred - my muscles disappeared and I put 21 Ibs on in 2 months! It can be a slow journey trying to get back to where you were pre-Pred! I've been on 3 doses now and have sworn never again - I'll go for surgery over more steroids now. I've already developed osteopenia (I had to request a bone scan as was bit dubious over effect steroids were having on body).

With regards to trying to 'get buff' correct recovery and nutrition are just as important as the training that you do, especially calculating how much protein you have etc. Be careful with protein powders and shakes as a lot of them contain a lot of nasty things in order to give them nice taste etc and don't think our bodies like all the preservatives, colourings etc. Personally I've given up on protein shakes but that's just me, lots of people don't have dietary restrictions whereas some of us can't eat much! It can be hard trying to get correct nutrition with so many dietary restrictions.

How long it takes you after Pred to get back on form probably depends partly on how well you are after - I've never been in proper remission yet and always bled a bit and had anaemia along with other things which of course makes you a lot more tired in training. I'm still weight training and doing cardio but am not running at the mo - even healthy people get 'runners trots' let along UC people! I'm hoping as I'm now on remicade to start running again. I try to exercise as much as possible but have had to adjust my training a bit. I also try to listen to my body when it's screaming with aches. I find even when I have a rest day my muscles still a little achey after!

Good to hear from so many fitness fanatics!!!! Wishing you all the best in your fitness goals!
Posted 2/16/2010 1:48 PM (GMT 0)
I have been a fitness and health fanatic all my life. After reading this thread I am beginning to wonder if intense physical exercise is a precursor to ulcerative colitis. Someone should do a survey. It is already determined that some people get UC after quitting smoking.
Posted 2/16/2010 1:56 PM (GMT 0)
I read once that a lot of bodybuilders have UC.
When I heard about it my thought was that it maybe was their Anabolic steroids intake causing error in the "system". Or that they eat soo much.

Don't know, maybe UC just hit widely across lifestyles .........

I have found it dangerous to assume stuff. Once you do that it really can limit your life. At least it does to me.
Posted 2/16/2010 3:50 PM (GMT 0)
Im new to strength training, been doing it about a year now.

My goal was to build more bulk and lose weight so over the year I lost about 30lb and replaced more fat with muscle .
Im now 210 5ft10

I have naturally soccer legs and a pretty even muscle spread if that makes sense.

I have been eating healthy in fact probably the most healthy in my life since training.

I found in the last 2-3 months before my UC diagnosis I was working out hard but taking longer to recover between sets.

Since finding out I have UC I havent been to the gym at all about 5 weeks now, im kinda stressed that Ill put my body out of whack.

but reading this I see its totally possible to train .

Now is a high protein diet okay to do with UC? I also take a protein shake once a day is this ok?

I guess being fit shows me im still the same person as before.....?
Posted 2/16/2010 5:02 PM (GMT 0)
It varies from person to person but for me high protein diet has no effect on my UC. Just make sure to take enough fiber though or you'll be hurting in the restroom.
Posted 2/16/2010 7:06 PM (GMT 0)

Pancolitisandfightingit said...

I have always been an ectomorph(difficult to gain weight , easy to lose) so when I was diagnosed in July it made things worse as it makes it even more difficult to gain weight.

I have trouble gaining muscle. I'm eating more protein now. It is helping. I take Kathak. It's an Indian Classical dance form. I need to gain muscle to do the really fast foot work.

Pancolitisandfightingit said...
I have read that people gain lots of weight on prednisone but this was not the case for me. However, eating chicken breast, brown rice and gluten free bread, sardines and very few fruits or veggies is probably not the way to gain weight. It has kept me feeling good though when it comes to UC.

Your diet sounds great for UC. Try adding sunflower nut butter. It's high in protein and many have found it helps their UC. I eat it with bananas.

Pancolitisandfightingit said...
I am ... hoping that now I'm on Prednisone that I can start gaining some muscle mass back. As I understand, prednisone eats away at muscle mass too which may explain my difficulty in gaining weight as I have for many years been a fairly muscular guy.

Yes. Prednisone does eat away at muscle mass. When I was taking prednisone, I would often say, "I'm on steroids. And what's worse, I'm on the kind that doesn't build up muscle mass. In fact, it takes it away."

Pancolitisandfightingit said...
Is there anyone who has any advice about how they got back on track with bodybuilding once finished with prednisone?

Is there anyone who was able to get the physique back that they had prior to being diagnosed?

For me, it's the inflammation and blood loss that took away my energy. I'm normally extremely energetic. It took about a year for me to get my energy level back up to where it is higher than most people. It's still not all the way back up to where it was before getting colitis.

Pancolitisandfightingit said...
Also, I am experiencing muscle aches that have gotten strong in the past week since finising pred. I did the proper taper so I don't think it's from tapering too fast. Are these aches to be expected? Generally, how long do they last?

I got muscle cramps when I was on prednisone. I also had them when I was tapering off prednisone. I don't remember how long they lasted. But it wasn't long. They should go away soon after getting off of predisone.

Pancolitisandfightingit said...
As for supplements, I'm taking alot.

Me too. They really do help.

Pancolitisandfightingit said...
I'm thinking that being able to stay fit while on prednisone for over three months is some kind of accomplishment I guess.

Yes. It is.

Pancolitisandfightingit said...
Is it safe to say that it is easier to gain muscle once off of prednisone and generally how long does it take to start noticing the positive differences once off of prednisone.? Overall, have not lost much in strength but it has been a hell of a ride to do this while on prednisone.

I think it depends on how much damage your body sustained from the prednisone and inflammation and how much blood you lost. The fact that you have not lost much strength means you will probably recover faster. Unfortunately, I lost a lot of energy due to loosing so much blood that it has been harder for me to regain my energy. I guess I shouldn't be so unhappy about it. I currently have more energy than most people and much more than most people my age.
Posted 2/16/2010 7:36 PM (GMT 0)
I am a Certified Personal Trainer and before my diagnosis, I taught about 5-6 classes a week plus trained clients on an individual basis.  After being diagnosed in 2005, I had to take it easy for a bit but once in remission, I hit exercise pretty hard again, teaching up to 11 fitness classes a week.  I was in incredible shape and was very strong.  Coming out of remission in August 2008 and again in November 2009 and two courses of prednisone later.....I am still struggling to come back.  I dropped down to only two classes a week (strength training) but kept all of my clients.  I have only just recently added one more fitness class to my schedule.  My personal experience is that when flaring, intense exercise makes me worse.  My theory is that exercise increases your immune system's function and to a system that is already in "high gear" when I am flaring, it's a bad idea.  Plus, I am way too tired to exercise hard. 

With all that being said, it is possible to come back, maybe not all the way, and it has not been an easy road for me, but there are lots of athletes with UC who do amazingly well.    I have made my peace with it.  I would rather be symptom free and feeling fine than worry about what my body looks like.  I have never been a "small"woman as I am very muscular genetically but also tend to gain fat very easily if I am not careful.  It's more important for me to be healthy on the inside and feel great than to try to fit someone else's idea of what I should look like. 

Nutrition is key also.  Feed your body well and it will perform.  Rest when required to let your body recover.  I have never been a fan of "supplements", instead, I believe that if your grandmother wouldn't recognize it as food, don't eat it. 

tongue 

Posted 2/16/2010 7:45 PM (GMT 0)
There are quite a few famous athletes with UC/Crohn's who perform in all sorts of disciplines. Not sure my body's in a good enough state to be getting an Olympic gold medal right now but shows it can be done!
Posted 2/16/2010 8:01 PM (GMT 0)

babeinthewoods said...
text[/I have been a fitness and health fanatic all my life. After reading this thread I am beginning to wonder if intense physical exercise is a precursor to ulcerative colitis. Someone should do a survey. It is already determined that some people get UC after quitting smoking.]]

Maybe it isn't the lifetime of chronic exercise but the supplements that most fitness buffs scarf down. Perhaps all the vitamins, minerals, herbs, and supplement capsules, (not to mention antibiotics), breaking down in the gut can eventually cause problems.

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