My Personal Journey with Crohns Disease

My Personal Journey with Crohns DiseaseMy personal journey with Crohns disease began in the fall of 1978. I think I’ve eaten a bad Big Mac from McDonalds. I’ve been vomiting and have had the diarrhea for 36 hours and generally feel like crap.  Either that or I’ve stumbled into a stomach virus that’s being stubborn, that happens with me from time to time.

It’s now 4 days later and I’m still in the bathroom more than I’m out of it but most of what I bring up or have in my stool is real watery rather than “regular” vomit or diarrhea.  I’m starting to get concerned because I’ve never been this sick in my life.

I have a husband, two young children, and own a gift shop that need running. How in the world am I going to take care of all of this when I’m getting weaker by the day.

Finally on day 10 I’m back to normal.  Little did I know that this normal was to be short-lived.

Both my husband and I figured I had really gotten into some bad food and a virus at the same time and that now it was over and I’d be alright.  WRONG!! About a month later the symptoms came back – violently, and there was blood in my stool.  Ok, NOW it’s time to do something about this nonsense so I called my doctor for an appointment.

I’m waiting for the day of my appointment to come and the only things I can keep in me are cereals, milk – which is weird because most people with Crohns can’t tolerate dairy, ice cream, mashed potatoes, and rice – which I grew to hate.

My family practitioner sent me to a gastroenterologist who, after many tests, and none of them pleasant, diagnosed the Crohns disease.

I’m still on my personal journey with Crohns disease. It’s now 1979 and back then the first line of attack was sulfa drugs.  These drugs not only upset my stomach, they didn’t do much for my Crohns symptoms.  He/we messed around with these drugs for about 6 months and then he decided to put me on lomotil for the diarrhea, prednisone for gut inflammation and pain, and an anti-nausea medication that I don’t remember the name of.  This combination worked fairly well for me but I hated the side effects of the prednisone, my nickname became “chipmunk cheeks” and as I look back on it, could have been much worse 🙂

It’s now late 1979 and because of the amount of time it took to run the gift shop and my inability to be there as much as I should have been along with a few other factors we closed up.  I soon found a job as a receptionist in a real estate office.  The people I worked for and with were very understanding if I had to quickly leave a meeting or phone call and head for the bathroom.

I’m feeling pretty good because of the medications I’m taking but still can’t tolerate many foods.  If I eat any kind of meat but chicken breast I’m immediately in the bathroom vomiting.  Vegetables, unless they’re cooked to mush, don’t agree and neither do fruits.  One hell of a situation to be in.  I love my husband because he’s trying to do everything he can to make things better for me but I swear, if he feeds me mashed potatoes one more time I’m going to hit him.  White rice is ranking the same as potatoes.  Now this is a man with imagination.  He said, “Let’s try baby food”. OK, we tried it and it stayed down and in.  I grew to absolutely love certain Gerber baby foods, especially the fruits and veggies.  I have a hard time with the meat but eat them for nourishment.  I’m actually putting on some weight which is a good thing because I’ve lost over 40 lbs. I went from 160 to 120 in less than a year and that would have been fine if it was planned.

Things went pretty good from late 1979 late 1980 when the symptoms just wouldn’t stay under control.  My doctor increased my medication dosages to the maximum I could be taking and I was still losing ground.  I was back to vomiting and diarrhea about every hour (one or the other) and food repulsed me.  I was literally losing a pound a day.

So it went until March 1981 when I developed an abscess on my colon.  Again I went through the barium x-rays, proctology exam, and a couple of other things to get ready to have the abscess removed.  The removal was done on April 16, 1981.  After that we all hoped things would turn around and I’d get stronger.  Wrong again!  On June 16, 1981 my colon ruptured because not all the barium from the previous exams was rinsed through.  36 hours later I had surgery to remove my entire colon and part of my small intestine.   I woke up with an ileostomy and a pouch on my abdomen.

My personal journey with Crohns disease is almost over; but, not so fast…Yes, I improved quickly after surgery.  After a 10 day stay in the hospital I went home and had sausage pizza and beer for supper.  After all these years I still don’t know if it tasted that good or just felt that good to eat it and have it stay where I put it :-).

I continued on a good path for 9 years, then wham.  The Crohns came back in the rectal stump the surgeon left when he did my ileostomy.  This time though I didn’t vomit or have diarrhea like before.  I just had bloody drainage from the stump.  Yes, it had to come out and more time off from work.  I had that surgery done in September, 1990.  After the rectal stump was removed I was stitched up right between my butt cheeks.  I couldn’t set much for two weeks until the stitches came out so couldn’t work.  Of course things got better quickly.

It’s now March, 2012, 34 years after it all began, and I haven’t had a Crohns flare (that I know of) since my surgery in 1990.  Unfortunately, because of the high doses of prednisone I was on and being depleted of almost all nutrients for three years my body is rebelling in other ways.

I have osteopenia and fibromyalgia that I truly believe I can trace back to the Crohns experience. Science is studying these diseases constantly to try to figure out what really causes them. I research often to see what new things are available for treatment. Some have given me relief from the fibromyalgia pain, some haven’t and I won’t know about the osteopenia until my next bone scan sometime this year.

God gives me strength to get through the bad days and He tells me to rest on the really wicked days.  I’m just so glad to have gotten through the experience and to be alive that, unless it’s REALLY bad, I can’t help but be grateful and smile.

Linda

My Personal Journey With Crohns Disease

2 Responses to “My Personal Journey with Crohns Disease”

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  1. Virginia says:

    Hi if you see this could you please email me my husband had crohns and we would like
    to ask you some questions if you don’t mind.. Thank you.

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