Crohn’s Disease Building Back to Health

Schematic of patterns of disease in Crohn's di...

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Okay… this is NOT going to work for everyone.  And this is NOT how it’s done every where, so ALWAYS talk to your doctor, specialist, and better yet also a physical therapist to get a routine built specifically for YOUR NEEDS!

When I was diagnosed with crohn’s I swear I had no muscle in my body left lol.  In two weeks time, I had lost 30 lbs and was only in the hospital a week upon my diagnosis before I was home and making my own meals.  It was a HARD struggle to get better, but I refused lay down and let Crohn’s Disease get me the way it did my sister.  She is still so sick, which I truly believe because it took so long to diagnose her, and then to get her on medications that actually worked for her.  If it wasn’t for my sister having been diagnosed at the same age as me just two years earlier, I might have the same troubles she goes through today.

I was considered a miracle patient from my G. I.  I refused to lay down and rest during the day, I was up and walking after the pain medication had worn off.  I got home and in less than weeks I was out dancing at the bar again.  I wasn’t drinking again yet mind you, but I was physically active.

A month later, I lost another 25lbs because they thought I might be able to make it without medicine when the first one they gave me, I ended up being allergic to.  I wasn’t lucky in that regards.

I got on the new medicine and withing 3 month I was back to work full time and working out 30 minutes every day as well as dog walking.

My first two years I consider nothing to go on bc your crohn’s changes so much.  I was in pain a LOT.  Enough that it floored me, or made me bed ridden.  I had problems with depression, which I ended up having to have a counselor and put on medications for it, bc I was diagnosed with Severe Resistant Depression.

I took my body and my crohn’s probably 4 good years to get it to what I think is now what my crohn’s will be like for the most part.  I have been diagnosed for 8 years now.  I have symptoms that most people get as a sign as a relapse as my every day symptoms.  I have the beginnings of tendinitis and fibromyalgia. I bleed all the time, I get anything and everything going around in the line of colds, bronchitis, strept throat, etc. just to keep my intestinal track from becoming inflamed.  In order to do so, our immune systems become weak.  I have nerve damage all through my autonomic nervous system (an even more debilitating illness called postural orthostatic tachycardia syndrome)  which started out as only nerve damage in the intestines from my body going into shock when I was first getting crohn’s bc my body had never suffered anything near as bad before.

I have all of these issues and guess what.. I am no longer on ANY pain medication, NO more nerve medication for my intestines, NO anti inflammatory medicine for my crohn’s either.  How’d I do it?  See Below:

Beginning exercising again was hard, but just bc of all of the muscle weight I lost.  I was badly out of shape from the joys of going to the washroom about 30 times a day before I was diagnosed… hence how I lost the weight!

DIET

When I was first back home I was in a lot of pain bc in the hospital they kept me on a soft food diet, and got home to house filled with meat, and everything my digestive track hates lol.  I love meat don’t get me wrong… but that’s where the problems started to arise.

Within your first year or two, you learn what you can and cannot eat.  Sometimes the foods you can are so bad like poutine, but the food that bothers you could be say an orange.  It really varies.  I could eat junk food like mad, but give me a hamburger and I would puke like crazy!  Even smells and tastes can send you to the washroom.  My biggest lesson that I learned, was that just bc it doesn’t feel like it’s bothering your crohn’s… it’s still not good for you.

I slowly but surely cut out every meat but chicken and fish.  I can only eat those a few times a month as it is.  Not everyone has to be a vegetarian,  but meat it very difficult to digest, so if you want to still eat it, stick to meats that are great for you like fish, and only have red meats every so often.  I hardly eat any other meat, unless I’m gone to visit my dad and step mom or a special occasion like Christmas.  Generally I won’t have ANY trouble having it, but it had to be only a few times a year.

Fruit.  I love fruit despite being a junk food addict, but most kill my stomach.  I get what I call gut rot.  Even bananas (my fav.  fruit which are supposed to be amazing for you) put me in bed for hours… if not a couple days at a time.  And as for having a glass of orange juice… not even worth it.  I drink no juice what so ever.  I only stick to the fruits that I can digest and leave it at that.  Apples feel amazing on my stomach.

Cut out all white flour, whites in general are harder to digest.  Start off with whole wheat, and work your way to 12 grain bread.  It keeps you fuller longer, and I digests so much easily.  You should be changing to brown pasta, rice, as well as crackers.  If your can get it in whole wheat or grain.. switch!  The pasta and rice I cannot even notice a difference with excepts that it feel good on my body!

Cut out sugar.  Seriously thought I’d never be able to do this, and of course I put sugar in my coffee still, but no chocolate bars, or candies, or pop.  This stuff reeks havoc on your digestive track, and if you constantly eat it, your body will happily through you into a crohn’s relapse for it.  Remember when having that coffee so many feel they need, a normal healthy person should drink no more than 6 cups a day.  I drink on average 1-2.

The rule of thumb is usually when in remission, keep a high fiber diet.  When going through a set back or a full blown relapse, cut back on the fiber.

EXERCISE

This is a hard one bc depending on how sick you got, it may take you longer to build yourself up.  We will always push ourselves beyond our limits, bc we’re constantly figuring out where our limits are.

When I first started exercising again, I stuck to leg and arm exercises first.  I walked, and used weights.  I slowly built up to more reps and stronger weights as I felt I was well enough to.  Don’t start out full boar, or you will make yourself more sick.

I also get very bored with my exercise routines quickly, so I added pilates and yoga.  This also helps with strength and helps with balance and toning.

Once I felt well enough to do those again, I started at the gym and slowly built up by using a recumbent bike, to a regular exercise bike, from walking, to a stair stepper, from walking on a tread mill, to using an elliptical trainer.  Your body tell you when it is just out of shape, to when you’re body is actually suffering from beginning too soon.  If you have to start off slow, do it!  It doesn’t matter how little you do, just that you keep it up.

DOCTOR’S APPOINTMENTS

Normally what happens, you GP, family doctor, makes a referral to a Gasterol Intestinal team of specialists, but even if you are in remission with your Crohn’s keep booking appointment, so it is easier, and quicker to get in, if you need to see them.  What the hospital I go to recommends, if you are fine, just call ahead of time and rebook for six months down the road.  Be fair, and give them enough time to let someone else get your cancellation.

Try to keep track of the good foods that feel good in your body.  Keep an updated list of all of your symptoms.  If you think it may not be Crohn’s related, you may be very wrong.  It effects everything from the hair on your head to the tips of your toes, so put everything down.  Remember also, Crohn’s Disease is an autoimmune disease, so you may just have another illness you don’t know about.  Most people who have one, wind up with more.

Find a list of autoimmune diseases (like the one on this blog) and ask your grandparents, mother and father, and siblings, if they have had any of them.  This will help pave a pathway to finding what other problems may be plaguing your body.

Always with any illness, keep a list of your allergies, and the medications you are currently taking, the dosage, and how often you take it.  You can write it up on your computer and print it out, and that way when a medicine changes, you don’t have to write out the whole list again.  This is important.  Yes most doctors and specialist will have a record of what they gave you, but it is a lot faster, and allows the appointment to go quickly when you have it right on hand.  And not all doctors will know what another specialist has given you.  You do not want a reaction from taking a new medicine that doesn’t work with something you are already taking.  This can and does kill people all the time.  Remember, even vitamins, heart burn medicine is good to add to the list as well.

Be open with how you are feeling.  If you don’t nothing will be accomplished.  They rely on you telling them truthfully how you are doing.  I finally bawled to my crohn’s specialist about how sick I was feeling and how it seemed something else was happening other than Crohn’s.  He listened, and tried to figure out what it may have been.  When he couldn’t, he sent me to a specialist who he thought could, and that changed everything for me.  It sucks, but get emotional if you have to, to get your point across.

6 thoughts on “Crohn’s Disease Building Back to Health

  1. Thanks Ash,

    It’s funny how differently Crohn’s hits people. For me, insoluble fiber knocks me out, but soluble fiber is OK. Anything acidic is out (orange juice/lemon juice/tomato juice). Anything with caffeine is out (coffee/peanuts). Along with the fiber, lettuce is really rough on me, but spinach leaves get through better.

    I also am going an exercising route, and currently run (and now swim). I hope to do a triathlon in a year or so, and already do 15k trail runs.

    Thanks for writing!

    • wow that’s awesome! good luck, I hope you get to 15k! most healthy people can’t do that! yeah I find with diet, to each is their own it seems. spinach is so much easier to digest the regular lettuce, but I find romaine usually okay.

  2. Hey Ash,

    I was just browsing around about Crohn’s and how it affects individuals differently. When I came across your blog I thought to myself, “Wow!” I’m 19 years old and just recently got diagnosed with Crohn’s in 2009. I’ve had it roughly for about 8 years though (I just didn’t know what to call it!). Ever since being diagnosed, I’ve had it pretty rough. I’m dealing with a lot of the symptoms, stress, and challenges that you have been so transparent about. Which btw, thank you for being open because it helps a lot for those who may not know what to do or how to deal with Crohn’s or POTS. No one in my family has ever had Crohn’s which makes my case a bit odd. It also makes it harder for my family and I to connect because they don’t understand what I’m enduring. I guess I’m just grateful to read up and find someone else with the same issues that I have. (I have yet to meet another individual who has it.)

    If it is possible, would it be alright if I could contact you via e-mail?

    Thanks for being open!

    • aw thank you! one thing I always said… I was so lucky to have my sister who’s like a best friend have it… well you know what I mean lol. She helped me out sooo much with all the weird little embarrassing questions that we can’t talk to others about, bc they just don’t get it! Of course email me! ashleypauls@hotmail.com any time!!!

  3. Since each person’s body chemistry is so unique, I can see how different foods would affect each person differently. It truly is remarkable.

    At first I couldn’t eat anything very well and keep it down. At one point I was vomiting on the half hour. Now I can eat anything except for raw onions or garlic. I have to cook them first. No problem now.

    The first year to recovery was a complete detox. Each year thereafter got easier and easier on my diet.

    Having suffered with Crohn’s Disease for over 10 years, I used raw fruit and vegetable juices, along with some high anti-oxidant, high-phytonutrient fruit juices like Goji, Mangosteen and others like it to help in my healing.

    I completely removed all animal foods to assist my healing. No blood or fat at all. And also no junk foods, candy, cakes, pastries, etc.

    I feel so much better than I did back during those “Crohn’s days”. I am so glad they are gone. I hated most the intense stomach aches that felt like a knife stabbing me.

    I often think about my fellow brothers and sisters who fight against this nasty condition. No one deserves to suffer like this. This is pure evil.

    • So true Steve! I think just eating natural foods of veggies and whole grains, no processed and no meat is the best way to go. I was also told with veggies and fruits that bother you, to peel the skin off them… even grapes. And it’s made a HUGE difference for me.

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