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Fitness & Exercise Support Group

Cat-a-Tonic

Super Moderator
I hope the bloodwork went well, Hawkeye!

Alli, yeah, my lilac bush was more like a lilac tree. It's still well over 10 feet tall but it's less massive than it was since I've been cutting a lot off of it.

I took my kayak out today, first time this year. Beautiful weather for it, arms & shoulders are tired now but it was a lot of fun! We had friends over last night and I had a bit of alcohol, but didn't pay for it today - I feel good. I know I pushed my luck but fortunately got away with it.
 
Location
Ontario
I never have that luck with Alcohol. I gave it up completely. It was an easy transition. I had been on flagyl for so long last year that I hadn't had any anyway.
 

hawkeye

Moderator
Staff member
26km long run today, longest since I did Philly in 2010. 90km for the week total.
Did you do the marathon? We were registered for the 8k and half marathon but I wound up in a flare and my wife was pregnant and ended up off running.

The blood tests went well on Thursday. Hopefully they can rule out a few things and figure out what is going on. I go back for the breath test (H Pylori) on Friday, it was scheduled for Thursday with the blood work but I had a Pepto Bismol tablet a week before and apparently I have to be clear of those for 2 weeks before I take the test. Still getting cramps, which seem to be happening when my stomach is empty and burping like crazy. Appetite started to come back a bit this weekend though.

Did some work outside this weekend putting up a play set - came to the conclusion that our lot slopes quite a bit so looks like we have to do some levelling to create a pad before we finish the playset.
 
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I miss running, but had to give it up because of my back. I miss alcohol too (well, wine!) but have had to give that up because of the anti-seizure meds. It sucks to give that stuff up, but not worth it to pay the price when continuing after the body tells you no more!
I have been only able to hit the elliptical for about 1/2 hour at at time. Between my head and feeling weak, I can't seem to go further than that. Pretty frustrating to someone who only a couple of months ago was doing 1-1/2 to 2 hours at a stretch on a daily basis.
 
Hi, everyone! I was diagnosed with Crohn's in April and haven't responded to the meds they've tried so far, so I will be starting Humira or Remicade in late August after another push enteroscopy. I used to exercise all the time, but it has become harder as my Crohn's has progressed. I try to do weight training and use the elliptical and walk outside as often as I can because exercise seems to help temporarily alleviate some of the awful pain, but I'm wondering how much exercise is safe? I have lost almost 30 lb. with Crohn's and am about 20 pounds underweight so I definitely don't want to lose weight but working out does help my symptoms a little. Any ideas?
 

Cat-a-Tonic

Super Moderator
Hi Stardust_Fiddle, welcome to our little group. Your question is difficult to answer and the answer will be unique to you, how active your illness is, etc. I was exercising a lot when I was in remission and I felt great - the only thing I couldn't do was jog, as it hurt my hip arthritis too much. Now I might be flaring and I've had to cut back some on my exercise. My doctor told me not to lift weights or ride my bike for a few weeks, but I can still do gentler exercise like yoga right now. I guess long story short, I'd say try different forms of exercise, and start slow. If you try lifting weights, do just a few reps of light weights and see how you feel. If that goes well, gradually increase the amount of weight & reps. Or if you try cardio, try some low-intensity and low-impact cardio for 5 or 10 mins to start with. At least one person in this thread has had success with run 1 minute, walk 1 minute (or longer if you need to), and you can always gradually decrease the amount/time you're walking. If you exercise and feel pain or other symptoms, slow it down or try something else.

As always, check with your doctor if you're unsure. If you've had surgery recently or if you have a hernia or anything like that, that will obviously complicate how much you're able to exercise. But if you do well with exercise, I would think it would do you good to continue with it. You're probably not harming yourself - you probably won't be able to put yourself into remission with exercise alone, but it should help with your illness. I've read that exercise can help alleviate pain, help you sleep better, help with depression, etc. So my totally non-professional layperson opinion is, go for it, but start slowly and be careful. :) Good luck!
 
Thanks! I do feel better when I exercise than when I don’t. Others have told me that I shouldn’t be exercising because I’m underweight but they are unfamiliar with IBD and while it makes sense not to overdo it I think that some exercise is beneficial. Thanks for your feedback!
 

Cat-a-Tonic

Super Moderator
If you're underweight, obviously you don't want to burn a lot of calories, but things like weight-bearing exercises can be really beneficial as that can help build muscle and strengthen your bones. I know I lost a lot of muscle mass and probably bone mass too both from being ill/losing weight and also from being on steroids (meds like prednisone and Entocort can rob muscle mass from you, and a lot of meds are bone-robbers), so weight-lifting has been really great for me to regain what I lost. My doctor told me not to lift weights for a few weeks which is driving me nuts, but I'm hoping to get back to it really soon!
 

hawkeye

Moderator
Staff member
Update - The thyroid, B12, and glucose (glycated hemoglobin) tests all came back normal. The results on the H Plyori breath test are still a couple of weeks out. GP thinks the Crohn's is "active", my gut tells me its likely in the small intestine given the weight loss.
 
Hi Cat! That must really be bumming you out about potentially flaring. :( I know how much you enjoy your weight lifting and bike riding! I hope you are able to resolve quickly and get back to your exercise. I wasn't able to exercise last week as we were at an isolated resort in Canada, which was pretty rough on my back. Unfortunately we didn't bring enough food of the type I can tolerate either so I still lost four pounds I didn't need to lose. :O I'm trying to eat a bit more this week since I'm back to my beloved elliptical and need to gain a couple back or at least maintain.
 
Hi everyone *hugs* I am new here to this forum and support group. I had to stop exercising due to me almost fainting (blackout) at the gym the other day followed by a relapse...Yikes! I've taken a couple of days off and have totally restructured my exercise regimen to low-impact Pilates workouts here at home beginning on tomorrow. Has this ever happened to anyone while working out?
 
Location
Ontario
Welcome Felisha. I have fainted after working out, usually when my blood sugar is low. So if in a flare, and not able to eat much, I cut down duration and intensity. I usually know if I'm going to faints I now try to avoid those situations, but just in case, I also wear a RoadID with all of my pertinent information.
 
I've almost blacked out loads of times :) usually my vision totally whites out: it's so hot here at the moment and I train in a very basic gym (old church building no air con) I just hydrate and try not to go from sitting to lifting or if I'm doing a set either do it slower or cut the number of lifts. If all else fails laying on the floor gets blood back into my head. Staying cool and staying hydrated are key, I also wear tight compression leggings to lift in.
It's manageable :)
 
I'm just in the process of being diagnosed - done everything save the colonoscopy which is scheduled for a month out. I'm developing my awareness of flaring, and how I respond to it. Moderate exercise seems to be a trigger to flares which also include greater joint pain, sometimes across my entire body.

Any advice on how to exercise while minimizing flares - e.g.; knowing how hard to push it?
 
Alli, what supplements do you use for your long distance rides? I have done several ultra-endurance MTB races - Leadville 100, Silver Rush 50 - and several long road rides - Triple ByPass - but I did each of these races before starting on the SCD/NSD two months ago. I have used Scratch Labs Secret Drink Mix, Power Bar Mix, Hammer Products, but they all have sugar in them. I am back on the bike today after starting Humira last week which vanquished my arthritis issues. I rode 30 miles today, drinking water and munching a Lara Bar. But for the long rides, I am concerned about proper fuel/nutrition. What's your plan for the marathon?
 
Location
Ontario
Alli, what supplements do you use for your long distance rides? I have done several ultra-endurance MTB races - Leadville 100, Silver Rush 50 - and several long road rides - Triple ByPass - but I did each of these races before starting on the SCD/NSD two months ago. I have used Scratch Labs Secret Drink Mix, Power Bar Mix, Hammer Products, but they all have sugar in them. I am back on the bike today after starting Humira last week which vanquished my arthritis issues. I rode 30 miles today, drinking water and munching a Lara Bar. But for the long rides, I am concerned about proper fuel/nutrition. What's your plan for the marathon?
On the bike:

In my Bottles, GU Brew or ELOAD.
Food: bananas, clif shot bloks, sharkies, honey stinger chews and waffles, regular power bars and the occasional chocolate chip cookie.

For running:

my stomach is a little more sensitive, plus less pockets. My marathon fuel plan is Clif Shot Bloks. The last three Sundays I've done 30km/30km/32km on shot bloks and water in my fuel belt with no issues.

I don't normally do gels, if I do I use Clif, the others don't workmwell for me. It really is an experiment though. Been in the distance running/cycling scene for 16 years, pretty much have it figured out now.
 
Location
Ontario
I'm just in the process of being diagnosed - done everything save the colonoscopy which is scheduled for a month out. I'm developing my awareness of flaring, and how I respond to it. Moderate exercise seems to be a trigger to flares which also include greater joint pain, sometimes across my entire body.

Any advice on how to exercise while minimizing flares - e.g.; knowing how hard to push it?
My advice is to do what you can tolerate. It's going to depend on you, your fitness and your disease state. If you are flaring and having trouble fueling, cut back.
 
It's good to hear you've been able to maintain a very active exercise schedule - and just having a preliminary diagnosis has removed some of the stress from the previous mysterious ailment.

I had my second observed bloody stool associated flare, in the last 6 months or so, yesterday - on a moderate hike, 3 hours and 700 feet, about 1/2 my typical comfortable max (it might not sound like much, but I'm knocking on 400 pounds). I had a bloody stool on the descent, and they haven't stopped. Is that too soon to observe a flare, after not much more than two hours?

I've also been playing around with Psyllium, and I'm wondering if that is an effect - I skipped it yesterday evening and will again today. 6 trips yesterday, on the high end for me and as watery as I've ever had it. Today, one small, bloody, early on then nothing.

It's kinda strange as I've been considerably more active for the last 3 years, and still feel fairly healthy in a lot of respects, even with some slippage since the start of my colitis problems. Today, I feel both the benefits of the exercise and the effects of the flare. It looks like I've got a rather narrow tightrope ahead of me.
 

Cat-a-Tonic

Super Moderator
DLTooley, how much psyllium are you taking per day? I take 1 heaping tablespoon daily and I've built myself up to taking that much - I started out taking a small teaspoon daily, any more than that would make me cramp and give me all sorts of trouble. I'm flaring lately myself and I'm not sure that psyllium is the best idea in a flare, as I seem to have more diarrhea when I take it. I recently skipped it for about 3 days, and my stools became firmer and more formed. I had great results with psyllium when I was in remission, but in a flare it seems to be a different story.

What type of blood are you passing? Is it bright red, or dark/black/tarry? If it's bright red, it's possible you may have something like hemorrhoids (internal or external) or a fissure that's causing the bleeding. What other flare symptoms are you experiencing?

For what it's worth, I've been flaring and bleeding lately myself, but still exercising regularly too. I have had to mostly cut out cardio as it seems to just cause too much joint pain and other issues, but I can still do yoga and I can also still lift weights as long as I avoid using my abdominal muscles too much (it causes pain if I work my abs too much). I have learned that I have to listen to my body when it comes to flares & exercise, and give my body rest when it needs it, and not push it too hard when I'm exercising.
 
Your fully thought out approach to Psyllium was exactly what I've been speculating on the last two days - and will definitely continue to do! I've mostly been doing hiking, and at 400 pounds its a pretty good work out, especially if there is any sort of a hill.

I've been getting bright red on the tissue, so it must be on the outside, plus some mixed in that makes a loose stool look a bit like a red enchilada sauce. I was under the impression that red was from the colon and black was from the small intestine.
 

hawkeye

Moderator
Staff member
Update - still haven't run since the 5K in May, but I am feeling better week by week, the appetite is coming back.

Spoke with a compounding pharmacist that I know last week and have started UltraInflammx for a 2 or 4 week course (seeing how the 2 week supply goes) and a 4 week course of Zinc Carnosine.
 
Hello!
Just wondering if anyone knows or is curious about altitude issues.

I've been coaching a ski camp out on the glacier in Zermatt and am a total newbie being just diagnosed with Crohn's ileocolitis in Aug. My acclimatization has been at least two-three days behind my normal rate. Day 1 I almost passed out on the glacier at the end of the day, my haemoglobin was slightly low, but this was unbelievable. I was careful to eat and drink throughout as not to be dehydrated or nutritionally compromised (PB/honey sandwiches, bananas, gatorade).
But the thin air takes its toll. Interestingly my heart rate day 1 was AVERAGING 133 for 6 hrs (not good) and maxed at 190. I was shocked! That's high for me even at 13-14000 ft.

Now I'm on day 7. My BPM is 109 and max 171. I'm not going to pass out, and how I have adjusted are much better but at the end of the day my joint pain and my legs are visibly shaking still. Anyone have any good ideas as to what causes this and how to deal?

Thought I'd throw this out there for people to beware that the adjustment might take longer for them and to be super vigilant about watching yourself at height if you're up there. And also for a little help if possible.
Thanks!
 
I spend at least three weeks a year in Vail and Leadville, CO. Leadville is at 10,200 ft. I hydrate on the plane ride there and eat two bananas immediately upon landing. I grab a large water bottle at the airport for the 2 hr drive to Vail. The worst symptoms I have experienced were "the winds" but my whole family suffers similarly, so I do not attribute the gas to Crohns.
 

Cat-a-Tonic

Super Moderator
Shelleyskis, a quick search of the forum indicates that there does seem to be some correlation between high altitude and IBD flares. It seems to me that I've read something about air travel being somewhat more likely to trigger flares as well, although I couldn't come up with that when I searched. (I don't remember if that was due to altitude or cabin pressure or what.) I have noticed anecdotally that I don't do well in high altitudes either - my main issue is that high altitude seems to screw up my sinuses and I get frequent headaches when I'm somewhere like Colorado.
 

hawkeye

Moderator
Staff member
Update

Still off the running. Energy level and appetite took a bit of a drop. Had a GI appointment last Thursday - his first words were - you've lost weight (down 28 pounds since January, not sure how much from my last GI visit in May).

There is narrowing in the left side of the large intestine that they cannot scope past. The narrowing was there in the 2010 and July CT scans. So I have 2 options biologics (may not do any good as the narrowing is likely scar tissue) or surgery.

August blood work showed slight anemia so I am back on ferrous gluconate to supplement, haven't been on this since the initial diagnosis in 1990.

Looks like we'll be doing a surgical consult when the local colorectal surgeon gets back to her practice.
 
This is Cool! Can't tell you how much exercise activity has helped me in the years I've had this____disease! Happy to be a part of the group. I'll offer what I can. Thanks,
Jim
 

rygon

Moderator
shellyskis I found that when my ferritin (iron) or b12 levels are low I really struggle with high altitudes. Anything I do makes me out of breath, tired and my heart rate to increase.

Apart from having those levels checked, I'd suggest you try either suppliments or eat more Iron rich foods. Also smoking and drink alcohol will not help, so try and keep those to a minimum.

Hypoxia can happen above 12,00ft (ish) so if you are higher than that I'd be careful until you are fully aclimatised
 
This guy is a little goofy - but when I felt strong enough to start "really" working out, his program helped a lot 'cuz it was more about gaining weight and muscle rather than burning fat (which always lead to a reemergence). Anyway - kinda stumbled on this guys stuff and it helped me gain weight - and I also feel the strongest I've felt in years - and better than I've felt since my 1st diagnosis....here is a link about his program: http://www.peakmusclebuilder.com/
 
Location
Ontario
Hi everyone. I haven't posted in awhile, have had a lot going on. Marital break down and stuff.
I did Toronto waterfront marathon on Sunday. Personal best time of 3:39:44. It was amazing.
 

Cat-a-Tonic

Super Moderator
Hi Alli! I'm sorry to hear about the marital breakdown. Glad to hear about the personal best though, that's awesome. How are you doing besides the marital stuff, are you okay? How are the fistulas, how's the military stuff?
 
Location
Ontario
Hi Alli! I'm sorry to hear about the marital breakdown. Glad to hear about the personal best though, that's awesome. How are you doing besides the marital stuff, are you okay? How are the fistulas, how's the military stuff?
I thought I was doing okay! until I saw my doc yesterday and he wasn't happy with how my fistulas are doing so now I'm on Imuran in addition to the Remicade.

My military medical file has gone to Ottawa where they will determine whether or not I'm released. Doc told me to fully expect to be released, but it may take up to 2 years.
 

Cat-a-Tonic

Super Moderator
I hope the Imuran does the trick. And wow, 2 years to be released from the military? That sounds like a really long time. I guess that gives you plenty of heads up to get your ducks in a row, though. What are you going to do when you get released? Maybe you could be a physical trainer? I've been pondering seeing what it takes to get certified in that myself. I think I want to get back into remission first though.
 
Alli, I'm so sorry to hear about your marital troubles. :( On top of everything else. I hope the new med helps with your fistulas.

CONGRATS! :dance: on your PB! What an achievement! So proud of your running abilities.
 

hawkeye

Moderator
Staff member
Alli, sorry to hear about the breakdown. That is a rockin marathon time though, hopefully the Imuran will do the trick for you..
 
Walking into the gym is the toughest, but walking out afterwords, you're glad you made the effort!
got a chuckle about this one :lol: since I bought my elliptical machine, I just go downstairs in the morning! I've always loved working out though so it's not really too hard to go down there. But there are days when I get started and I feel like OOF.
 
Hi All,
I very much want to make exercise a part of my life, but my fatigue level after anything physical is intense. Today I went for a 15 minute swim, and now I feel like I'm going to be zapped for the rest of the day, even after a nap. Did anyone else experience this when first starting? Any hints, tricks, or advice to help?
 

Cat-a-Tonic

Super Moderator
Mondowicked, are you flaring right now? I'm in a mild flare, and some days my energy levels are really low too. I just have to listen to my body and let it rest when it needs to so that it can try to heal. When I have okay energy levels, I try to do my workouts as usual. I know it's frustrating to have to rest when you want to be more active - you have to listen to your body though. When I was in remission, I could work out 6 days a week pretty easily. Now that I'm in this mild flare, it's more like 3-4 days a week during a good week. I wish I could do more, but I have to work within my body's limitations right now. I know things will be better again once I get back into remission.

As for advice, start really slowly. If 15 mins of swimming wipes you out like that, then maybe go for 5 mins of slow walking or gentle yoga the next time you feel like you can do some exercise. Try different forms of exercise, as your body will react to them differently. Honestly, walking isn't the best for me, my joints don't always like it. Jogging is even worse, my joints and my guts do not like jogging (though I stubbornly still try to do it). But I can lift weights pretty well most of the time without pain (sometimes I have to avoid working my abdominal muscles very much). And yoga goes pretty well for me too - it doesn't feel like a tough workout, but my muscles are usually sore the next day! If I'm looking for a quick workout, hula-hooping is actually easy on my tummy and is a challenging and fun workout for 5 or 10 mins. So, just take it slow at first and try different things. I know it can be frustrating, but you can do it! Don't give up!
 
Hi!
I'm in a flare too and it's really grueling at times when I want to work out.

I find hydration and sleep give me my best days out there. Coconut water to replenish lost electrolytes, and making sure my iron intake via my
Diet is a well maintained. Potassium from a banana iced with almond milk in the blender helps me before my workout and a low fat high protein snack after is best. Bread and peanut butter or tuna.

So really it comes down to being even more vigilant about my diet and it's frustrating because I do hit walls sooner. But as mentioned above
Listening to your body really helps. On severe days I do a bit of at home yoga with some lights weights on a stability ball. For differing times depending on how I am. Not using my major muscle groups bit instead focusing on the minor ones. It's often neglected so in the end probably better for me anyway. I stay away from running but can manage a light low resistant spin.

I know everyone is different and I wish you the best of luck. Despite all of these things I've discovered I still have days where I lie in bed for ages just letting the body rest up. I hope this helps and good luck!
 
Whatever niche you choose to select, be it running, walking, swimming, biking, weight lifting or whatever. With just keeping moving you'll score a victory over Crohn's or whatever autoimmune disorder you suffer from. It's sometimes tough on certain days to drag yourself into the weight room, putting on the running shoes or whatever. But you can't beat the feeling of the blood rushing through your veins and the feeling of euphoria that accompanies a good work out, right?Keep it up all of you!
Jim
 
I'm aiming to go to the gym for the first time since i got crohn's disease next weekend.

I felt well enough to do a few sets of push ups and pull ups today and on thursday and i can't even describe how great it made me feel. I always loved lifting weights but the enjoyment was multiplied by 100 due to the fact that i hadn't done if for months.

I'm going to be very careful with it, since it did kind of increase my pain, but the goal is to do some 30 min work outs, maybe twice a week to easy myself in.

Sure it's not my old habit of 1 hour+ every other day but it'll mean the world to me if i can do it.
 
Cat-a-tonic: Yes, I feel like I've been in a flare for too long now, so I'm trying to push through it. I sometimes think my body overreacts to every little thing that comes along, be it a virus or the effects of exercise. I will try to mix things up and try yoga and other gentle activities.
Shelleyskies: Wow, banana and almond milk sounds amazing! I've been working hard to find "safe" high protein snacks for me to eat throughout the day. My next idea is to soak and roast/dry my own nuts to make them tastier and easier to digest.
Jim: yes! Score one for me getting out and trying. Crohn's is still winning at this point, but I will conquer. I see an awesome t-shirt or banner coming from this.
 
Great Post! I can't say enough about what exercise has done for me. I've been staying active ever since I had surgery back in the seventies to take care of a perforation in my intestines. I was sore for a while, but that didn't stop me from climbing on my bike and riding for miles. Eventually the soreness went away and I got my weight back and actually started developing muscle. I then began weight lifting and haven't stopped since. I'm 62 now, but when I take my shirt off, people go Wow! There is absolutely no reason you have to let crohn's slow you down or take over your life! Good eating is important and taking the right kind of supplements. I get B-12 injections monthly because I can't absorb it naturally, but that's about it. If I do get a flare-up I use Asacol and that generally calms it down. I've had Prednisone too but try to stay away from it. Too many side effects. Thanks,
Jim
 
Mondowicked, sounds like you are quite determined. Keep experimenting, you will find a way to accomplish what you want to do. When I was flaring, I had to skip some days because it was too painful and tiring. After my brain surgery, I had to take a full six weeks off, and getting back into it was so hard. I had to start with about 10 minutes a day on my elliptical, and even that exhausted me. I worked my way up a couple of minutes every few days, and now I'm finally back to 30 minutes a day and not feeling entirely exhausted.
Even mild stretching, walking or light weight lifting will help you stay in shape and give your immune system a boost, so keep experimenting and trying!
 

Cat-a-Tonic

Super Moderator
I make banana & almond milk smoothies too! :) I try to have one every morning, as I'm not much of a breakfast person (solid food first thing in the morning makes me pretty nauseous), but I can do a smoothie okay in the mornings. I use a big cup of ice, enough almond milk to cover the ice in my blender, a banana, and some nutrient powder stuff. I was using this soy-based nutrient powder, but my brother just gave me some wheatgrass-based nutrient powder, so I tried that for the first time this morning. It's supposedly chocolate flavored, but it smells kind of nasty, so I added in some cocoa powder with it in my smoothie to offset the taste. It was pretty good, and my guts seem okay with the wheatgrass so far.

Oddly enough, just eating a banana would give me all kinds of problems. They seem to aggravate my GERD and also sometimes give me abdominal pain, I don't know why. But blending a banana into my morning smoothie and consuming it in that form, that never bothers me. I don't know if an unblended banana just has too much fiber for me or what. I know I have borderline low potassium though so I'm glad I can get bananas in my smoothies at least!
 
Before my admission in November I was managing 10k three times a week. I am now not exercising at all, so I have joined this group to motivate me to get back to where I was :)
 
I do the almond milk banana protein powder smoothie and for some reason can do 1/4 cup of blended and smashed blueberries. Anything more than a 1/4 cup and I'll be in the fetal position.
It's been tough adjusting to this and my immune system is very low. In temperatures where I'm working and it's -40 Celsius I have to be really careful with hydration and eating. The prednisone has killed my muscles so lifting and skiing with stuff is more of a challenge but I'm coping…anyone have a good idea as to a solution for muscle recovery and development with prednisone and azathioprine?
 
Earthsoul, you'll get back there.... it's just a matter of starting back into it slowly. I found after my craniotomy last summer I had to wait about seven-eight weeks to start back on my elliptical, and then I could only do about ten minutes a day. I had to gradual add time to get up to my usual half-hour, and that seems to be the max I can do for now, so I'm trying to be satisfied with that.

Shelley, do you do any light weight training? 2-3 lb weights might be a good place to start, do five reps at a time, and get plenty of protein to maintain muscle growth. It's very challenging when medication is doing the damage, especially when you have to fight against environmental changes. Hydration is definitely important; just remember that sometimes just enough water isn't enough, as when you become dehydrated you don't just lose water, but electrolytes as well.
 
This is a pretty interesting forum. I was told I have Crohns 13 years ago and have choosen to trade in the meds for Diet and Exercise 5 years ago and while I still have the normal "bad days" we all do I know if I stop even for 2 weeks I feel awful..Many days I have had to drag myself into the gym but I always feel "normal" after. I landed up competeing in powerlifting ( winning a few medals in the process) but it wasnt easy and still isnt easy. To those who are in the forum hoping exercise will help you live a more normal life I can say for me it has helped more than any drug any doctor handed me. No matter how hard it is for you to get to the gym or go for a run...remember there are others out there fighting with you and we won't let this disease win
 
I though I would add my work out routine. I got bit by the running bug a few years ago when I living in Chicago. I would watch the marathon go by and I got inspired to run. Then, I got Crohn's, so I had to put training on the back burner for a while. I had surgery last February and the recovery was tough, but as soon as I as cleared to exercise again, I joined the YMCA. So I go to a body shaping class two days a week and I run one or two days a week. I did my first 5k last year and I will do another one in March. I hope to run a half marathon later this year, but we will see. I also like to do Zumba every now and then too. :)
 
Back when I could still run, I ran a few 10k races and really enjoyed them. There was just something different about running with so many other people, and then having a finish line with peopl waiting for you to cross and then congratulate you! It felt like a big deal and was a lot of fun. I had goal of training up to a half marathon but then had to stop running. I miss it.
 
Jerzy what diet did you opt for as a powerlifter? This forum is very inspiring. My goal is to practice yoga daily or at least every other day and gain muscle. I was diagnosed 13years ago as well and it seems like every year my symptoms take me by surprise and something different is happening with my body (blockages, vomiting, bleeding..) My flaring right now is severe and light stretching/yoga helps with my energy.
 
Chay, I learned early on to eat like a bodybuilder to control the disease and add lean mass, the leaner I am the better I feel the stronger I am

5-8 smaller meals a day
Low fat meats
Clean carbs
Good fats

No sauces butters or oils
 
Thank you Jerzey, It sounds so simple and rewarding!
Example: ( amounts of macro's depend on body mass/size )

meals spaced 2-3 hours apart

Meal1: protein powder, sugar free Fiber one
M2: Chicken breast w/ Brown rice and black beans
M3: same as M2
M4: egg whites and sweet pototoes
M5: Grilled Tilpia in salad
M6: same as 1
 
check with the doctor first. Walking is probably a good place to start, a lot of exercises engage your core, which might be something you need to be very careful of. The doc will advise you as to what you are able to do.
 

Cat-a-Tonic

Super Moderator
nini_mini, I agree with Cindy that you should ask your doctor first about exercise. I would think perhaps some gentle yoga might be okay, and short slow walks could be good too. The key would be to start slowly and gently. If your body responds okay then you could gradually increase the length/pace of the walks, or the variety & intensity of yoga poses. Definitely check with your doctor first though to see what they say.
 
Thanks guys. I know he said to wait 8 wks before starting anything :ybatty:. So Ive been walking like a mad man :runaway: and I'll tell ya I'm getting bored of walking :whistleinnocently:! Haha maybe I'll work my legs or something :sheep:, these two twigs need some muscle back lol or play some just dance on the Wii! :luigi: :pika:
 
just be careful not to overdo or strain those areas which are trying to heal. I know it sucks to wait but it's the best thing to do, to be safe. An injury could really set you back.
 
Yeah. I haven't done Any ab exercises. I tried and it hurt so I quit. I like just dance because your pretty much just working your arms and legs. Funny thing is the pound and a half I gained back is literally all around my torso and it just feels like this awkward layer of something sitting there because Ive been so thin all year. I get healthy work it off then get sick again its literally a cycle
 

Cat-a-Tonic

Super Moderator
Unfortunately a lot of arm & leg exercises require you to work your abdominals in some way as well. I have severe GERD and my GI told me that my symptoms will be better if I avoid working my abdominal muscles as much as I can. But even with something like riding a bicycle, you think you're just working your legs, but your abdominals are working a lot too, they are engaged in helping you balance & steer and all that stuff. My tummy often feels quite sore after a longer bike ride, and sometimes a long ride will even cause me to start bleeding. So yeah, have fun dancing and working your arms & legs, but be careful - you may be using your abs more than you think, and it could end up being detrimental.
 
I will be. I can use them and ill be a little sore but it passes in an hr or so. Im not going crazy on using them just need to get my cardio up because it sucks. I have gerd too. I usually take a tagament 40 mins before exercising and im okay after. Either that or some promanthazine.
 
Hello All,

Complete newbie here when it comes to formal exercise. Overcoming a lot of mental inertia, I signed up for a local gym recently. Although I play sports (mostly in the summer time), never really exercised in a formal set up. A lot of folks here seem to be into running.

Would someone be kind and patient enough to suggest how I go about starting and maintaining an exercise plan. FYI: I am recovering from a fistula. Although it is not very active and is healing, it does bother me once in a while. And I must add, losing weight is not my goal, in fact quite the opposite.

It is sort of awkward to walk into a gym not knowing much about what and how much to do :). Thanks and I look forward to getting some feedback.
 

Cat-a-Tonic

Super Moderator
Hi Idlebrain, welcome to the club. General advice for you - start slowly and don't push yourself too hard at first. Weight lifting could be good, it'll help you build muscle and you shouldn't really lose weight with it, and you may even gain weight if you put on a lot of muscle. Start slowly though, and if something hurts/causes symptoms, then find a work-around or do something else. I know that AlliRuns has fistulas and she still runs marathons, so it's definitely possible to get into running even with fistulas. Again, though, start slowly and don't push yourself too much until you know what your body can & cannot handle. If there are trainers at your gym, you could ask one of them to help you formulate a workout plan that will help you get into shape without losing weight or aggravating your fistula, etc. Good luck and have fun!
 
I have done absolutely nothing in the last year relating to exercise due to my op and new stoma. I went paintballing this weekend for a friends sons birthday party and could hardly walk come monday lol.

dont get me wrong it was a good pain but i did feel really old!!

More exercise is needed me thinks
 
I have done absolutely nothing in the last year relating to exercise due to my op and new stoma. I went paintballing this weekend for a friends sons birthday party and could hardly walk come monday lol.

dont get me wrong it was a good pain but i did feel really old!!

More exercise is needed me thinks
True but definitely slow. give those sore muscles time to heal and then do something else, but don't overdo it!
 
@ mccindy and cat-a-tonic. Thanks for the advise on exercising and to take it easy. I did take your advise and the funny thing is Ive waited to do more than walking and just dance and I flared (remi wore off) so now I literally can't do more than that (well besides :poo:) lol. Most of the time I'm laying in bed with tramadol watching, CSI Miami, criminal minds, and will & grace.:ylol: Lol the wonders of flares. Anyway just wanted to say thanks for putting common sense back into my head. I'm usually a workout junkie and its hard to just sit around. :boring:
 

Cat-a-Tonic

Super Moderator
Nini_mini, I'm sorry to hear you're flaring! Do you have another Remicade infusion coming up soon? Unfortunately, the nature of being ill with an unpredictable chronic illness means that sometimes you'll get sidelined with flares or bad days. Listen to your body, rest when you need to. But on good days, do exercise! I still stand by taking it slowly at first, because you don't want to overdo it when your body isn't used to exercise and end up flaring or having a really bad day. Do what you can, when you can, and take it day by day. Try not to let a bad day discourage you, just pick yourself up and keep going on your next good day. Yes, sometimes it'll feel like 1 step forward and 2 steps back - but as long as you keep taking 1 step forward at a time, you'll eventually make some progress. Hang in there!
 
Cat-a-tonic-, yeah it happens every five weeks or so. My next remi infusion is the 28th so next Tuesday yayy! And yes that's what I do is take it day by day if I feel good enough to exercise I do if I don't I don't do it. Ive become very intune with my body over the past year. It yells at me when I do or eat something it doesn't like. Its very opinionated lol im doing my best to go 1 step forward but I seem to get sideline a lot but alas I must push on.! I'm a hangin!! Haha :)
 
Thanks I'm doing my best! Its super active crohns at its best. Lol :yrolleyes:
I think I'm gonna paint my nails to make myself feel better :)
 

Cat-a-Tonic

Super Moderator
Oh yes, my body yells at me too when I do something it doesn't like. Listening to your body is important, and it's not difficult when your body pretty much screams at you! :p Have fun painting your nails! That's something I do during bad flares, too. I had rainbow sparkly nails at my last colonoscopy, I got a little too ambitious with the nail polish during prep, ha ha. :)
 
Hahaha! Yeah its kicking and screaming today I guess my body doesn't like me cleaning for most of the day like I did yesterday. But it had to be done. And I am its difficult to paint with my right hand since I'm left handed haha. Also I had rainbow toe nails at my last one because I got bored during the prep lol. They made me take the finger nail polish off though, sigh, oh well. Lol
 
Left-hander here too, it is awkward to paint that left hand! I used to have this plastic thing to hold that kept fingers separate and still to make it easier, but I still ended up with some painted cuticles.
 
Fitness Enthusiasts:
Looking for some advice and feedback.

I went to my gym yesterday and set up an appointment with the trainer for the so called intro and personal training session. What it ended up being was less of training and more of a sales pitch to signup up for paid personal fitness sessions ($40 per each 0.5 hr session). I was a little turned off by the aggressive sales pitch although I see value in working with a personal trainer for a beginner like me. He kept on saying how there are 100's of fitness regimens and how I could hurt myself if I did not have a personal trainer.

I was wondering if someone could give some insight on the value of hiring a personal trainer. I ideally wanted to begin slow and work my way up to improve my overall fitness and health. I admit I am a novice when it comes to professional exercise and equipment.
 
I think honestly there is so much information available on the internet, if you are careful, you can find the information you need to safely work out without paying for a trainer. Many of the forums I'm on have members who are professional trainers are they are willing to give their advice for free (MyFitnessPal is a great one). You are on the right track already, with starting slow and working your way up. I've been doing fitness for a few years myself so I know some and would be willing to answer questions, but I am not an expert. I would definitely advise joining MFP.
 

Cat-a-Tonic

Super Moderator
Idlebrain, working with a trainer may be beneficial to you, but I would steer clear of the sales-pitch trainer as it sounds like he's more out for money than anything else. If it were me, I would consider complaining to the gym's management, that the trainer was unhelpful during your introductory session and only wanted to sell you stuff. If you do go for a trainer, look for one who is properly certified (it is possible to get a physical trainer certification online, and I don't know that I'd trust someone to train me if they had only taken a few online classes and paid $500 to be called a trainer!).

Yes, as a novice you are at a bit of a risk of hurting yourself, but from what I've read, it seems like most novices cause themself injury purely because they try to do too much, too soon. You can't go straight from being a couch potato to bench-pressing 1000 lbs, you need to build yourself up to that level or you'll hurt yourself - it seems like some people don't realize that though. So I think as long as you do a bit of research on your own, as Cindy mentioned, and take it slow and just listen to your body and gradually amp up the intensity & amount of time that you're exercising, you should be fine. And if you want to do something like weight machines, they usually have instructions printed right on the machine telling you how to properly use it. Again, you may want to do a bit of research to make sure your form is correct and things like that, but as long as you are a bit cautious and listen to your body, you should be okay.
 
Cat-a-Tonic: Thanks for your response and advice. I am not averse to the idea of hiring a trainer for a few sessions but his desperation is what put me off. I will think about notifying the management.
 
Trainers are great if and when you get a good one they will keep you on track and not mind just a check in appointment when you're on a program. But that guy who tried to sell you packages is obviously not your style.

You can always get a program and a one off appointment to set you on track and then every month or so just check in to make sure you're ok and make sure you're doing the exercises properly.

Once you're more comfortable then you can just do your own thing.

Good luck!!!
 
I'm new to the forum because although I was diagnosed in 2006 (and suffered for many years before that), I've always secretly thought that the Dr's got it wrong and that one day I would be magically healed. Turns out they were right the first time and I do actually have Crohns :(

I'm meeting with my Dr on Monday and he wants to put me on Remicade though this terrifies me and I really don't want to do it. Most of the time I feel healthy but I've had two major flare-ups in the last two years, both after running a marathon and I've always thought that the flare-up was brought on by my taking a break from running ...... Has anyone else experienced this?

Has anyone reduced inflammation by diet rather than medication? If yes, how does that work with training? I'm running another marathon in July so not sure how I would do that if I can't carb up the way I normally would.

Any help/advice would be really appreciated :)
 
SarahLou: I am assuming your Dr has the most recent information on your current levels of inflammation to actually recommend Remicade. Am not sure what kind of symptoms you experienced/experience, but I doubt diet and exercise alone can reduce/eliminate inflammation. I do believe they can aid in the process of healing, but I wouldn't take a chance skipping the medicines all together. I guess we have to pick the lesser of the evils, one of those benefit outweighs the risk cliches.
 
I had a colonoscopy last Thursday and it was after this that my Dr suggested Remicade because he had been unable to get the camera all the way to my lower intestine due to what he thought was severe inflammation. I had a barium test today and though I'll see my GI Dr on Monday to talk about the next steps, the Dr today said it was a severe stricture causing the narrowing rather than inflammation. So I guess now I'm not sure what my GI is going to recommend.

I currently take pentasa and I feel healthy but as I said before, my last two flare-ups have both happened when I've taken a break from running .... maybe that's because running is a natural stress-reliever?
 
My wife has Crohn's and she manages it well with diet and exercise. She has done a couple of special runs for motivation: The Color Run in Portland, OR and the Mud Factor Run in Sumner, WA. She's tried the Insanity workout and Jillian Michaels workouts. I've been mostly gone, due to my military service, but now I'm out and spend my time at home with her. We are looking to start doing kettlebell workouts together. Shoot, I might even do insanity with her. I truly believe her fitness and diet help her to manage her crohn's.
 
Jason, that's really encouraging to hear; thank you for responding! What specifically does your wife eat or avoid eating that she believes makes a difference to her Crohns? My Dr is adamant that it has no impact but I don't quite believe that myself. I've been reading a lot online and gluten seems to be mentioned a lot, as does sugar. I'm currently training for another marathon so I need to be able to eat carbs prior to long training runs but I'm thinking of trying out some gluten-free pastas instead of the usual whole wheat I would normally cook.
 
Sarah,

My wife avoids all processed foods. She especially avoids processed wheat. In fact, she tries to avoid wheat. She has learned how to make many of her favorite foods without gluten. Honestly, it's crazy the recipes she thinks of--she made a gluten-free pizza with zucchini for the crust and it was amazing! Here's the link to the recipe, if you like. She recently made a recipe with gluten free bread to compete with Olive Garden's bread. She used to love to eat there, but can't anymore.

I'm not against doctors, but I don't totally trust them, either. Simply, they see things through a very specific perspective. Megan is able to live mostly medication free by carefully managing her diet, managing her stress, and doing fitness. Her GI said she could never do it. I know Crohn's and other IBDs are unique to everyone, which is why it's important for each sufferer to explore their unique needs.
 
Jason, I must admit your wife's approach is very similar to my own. I don't eat a lot of processed foods because I like to cook. I came off my Meds (pentasa) for a couple of years and did just fine but I've recently had to agree to start taking Imuran as I have some severe inflammation and risk a blockage if I don't do something. I can't tell you how disappointed I am and so even though my Dr thinks that diet is irrelevant, it's something I'm willing to explore. Thanks for the link to the recipe, I'll check it out and will be attempting to avoid wheat to see how I do. I've also read that limiting sugar is a good idea too (unfortunately).
Many thanks :)
 
It's kind of funny. My doctor refuses to give me a diagnosis, but thinks that all of my problems are related to diet. He acknowledges that I have to avoid many foods but won't acknowledge any possibility of IBD. He sticks with the idea that it's IBS despite my inability to eat most foods, and the fact that I have night sweats, occasional rashes, mouth sores, chronic constipation and occasional diarrhea, along with constant moderate and occasional severe right abdominal pain. I manage mine with diet and exercise for the most part, as well.
 
Exercise and diet (particularly no Gluten) works best for me. Although not all Crohn's patients have Celiac, I know I do. A simple blood test done by your gastroenterologist will indicate it's presence. Exercise goes a long way to control stress and depression too. Both will spur Crohn's attacks I've discovered. So, instead of being cooped up inside as result of this terrible winter, (if you live in the northern states) get out to the gym. You'll feel better and be glad you did! Jim
 
McCindy; it sounds like you need to change your Dr as your symptoms are the same as mine. I'm going to explore changes to my diet to see if it makes a difference as my goal always would be to not take medication. That's not possible for me right now because I have some severe inflammation that needs to be brought under control. I agree with you Jim about the positive effects of exercise. I've not run since last Wednesday because of crazy weather here in the Northwest but today, I'm on it! Freezing rain and snow be damned haha.
 
Thanks Sarah. I do definitely plan to do so, as soon as I can save up enough time to get down to Mayo in Rochester. That's where I see my neuro-oncologist, so maybe I can do 2-for-1 trips that way.... if I can find a good GI that will believe me and give me a reasonable diagnosis. The only medication my current GI would even try was Linzess and it was so horrible I had to stop taking it. I've never had such pain and awful diarrhea. I couldn't eat and lost more weight than I did without it.
Weatherwise we've been stuck in the negative temps for weeks, but I've got an elliptical in my basement that I use daily. It's definitely helping me to stay active, and I do notice that my belly feels better on the days I work out than on the days that I don't.
 
My wife and I are signing up for Team Challenge. The Northwest Chapter of CCFA, which serves Washington, Oregon, Idaho, Montana and Alaska, and we will be participating in one of the Half-Marathons together. Team Challenge is a training team that helps raise funds for Crohn's and Colitis. We don't yet have the funds, yet we are moving forward and hope that things come together.

I hope some of you are able to sign up. Maybe, if you are unable, a family member will run for you. We're excited!
 
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