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Crohn’s Disease is a Life Changer… But So is SCD

Shock and awe.  Followed by waves of inspiration.

That’s the series of emotions that I experienced reading the story below.  It’s something I feel each time I read about someone who’s overcoming their health challenges.

The following story was written by Cristin.  She put a ton of effort into it, so I published it in its entirety.  It’s a heroic story of a busy mom who said no to drugs and yes to health.  A woman who endured lots of complications, fired plenty of doctors, and yet offers great advice to those of us who are fighting for our health.

Crohns

To understand why my journey with the SCD diet started, you have to go back to the beginning and how one night changed everything.

“Who has time for this?” Yep, that’s what I thought on the drive to the emergency that Saturday evening in December 2011.  Earlier in the afternoon, I told my husband I was going to rest for a bit, as the pain in my lower abdomen was a little worse, I felt feverish, and I was “pretty sure I had the flu or something.”  If only…..

While I curled up in a ball on the bed, I called to my husband, asking him to Google “appendicitis.” He read me some things and knew I was serious when I replied, “You better call my doctor.” After a brief phone call, we made arrangements for a close friend to stay with our two-year old and eight month old, thinking this would be a quick removal of the appendix and back to life as normal in a couple days.

We Could Not Have Been More Wrong.

This was the beginning of what would become our new normal.

Fast forward twenty months to today and the controversy of that December night is still fresh in my mind, but not as consuming as it was back when I was told, “You have Crohn’s Disease.”  You see, beside the five days of increasing abdominal pain, I was healthy, no symptoms of Crohn’s, super active, a runner, no diarrhea, no pain.

It didn’t make sense… unless you go back to that night and what happened at the ER… 

Our local hospital has a reputation for being less than qualified to take care of the injured or sick, but we thought an appendix was pretty routine so we would be okay going there.  Wrong.  The short version is that the on-call surgeon would not come in to evaluate me after blood tests indicated, and a CT scan showed, a ruptured appendix.  We were told I would be put on antibiotics and morphine until morning when the surgeon would come in to check my progress.  Thanks to the help and knowledge of friends in the medical profession, we decided I needed to be transferred to another hospital about an hour away.  We had no idea the ER doctor and nurses would make it so difficult for a transfer to occur.

To say it was a nightmare is an understatement.

Finally, after five days of increasing pain and ten hours after entering the first ER, I was on the operating table having my ruptured appendix removed.  When I left the hospital a day later with my antibiotics in hand, I was ready to heal and move on from what had happened.  Unfortunately, that was not going to happen; at least not yet.

I was able to enjoy Christmas with my family with some pain and a feeling of, “not quite right,” but I was ok.  I assumed that was normal after surgery, right? A few days after Christmas, my “not quite right feeling” began to get worse, much worse.  Finally, on New Year’s Eve, I told my husband it was time to take me back to the ER.  And this is where the story gets good…

That afternoon they changed my antibiotics and sent me on my way.  Great, I thought, another week of meds and this will be over.  Not so much. I ended up back in the hospital for a week of IV antibiotics, followed by a week home, only to return again for another stay and IV antibiotics, followed by two weeks of IV antibiotics that my husband administered at home.

As long as I was on the IV, I was clinically doing well…

But as soon as I went to oral antibiotics my body couldn’t fight the infection inside me.

Finally, seven CT scans over a seven week period of time later, I was going in for another surgery so they could, “clean out the infection.”  During the surgery, the doctors ended up performing an oophorectomy , as well as putting a stent in my damaged kidney; all from the infection.  How in the world did a ruptured appendix turn into this?  If that surgeon had gotten off his couch, would I being experiencing this?

Three weeks after my surgery I was feeling pretty well and started coaching track again.  Throughout the spring season I had some twinges of pain, but nothing terrible.  And then, it started.  At the end of March.  I could not put anything in my mouth – not food, not drink, not gum, nothing – without a horrible pain above my belly button.  So I stopped eating.  I lost thirty pounds and I was starving.

Finally a colonoscopy was ordered

And that’s when I heard those words, “You have Crohn’s Disease.”

Of course, I was in denial.  ‘I had no symptoms. I had just had two “kinda” major surgeries.  This was just pain from the healing.  There were reasons for the pain, and Crohn’s Disease was not one of them.’

I was given a prescription and told to start taking it so I would feel better in a week or two.  I had a million questions, but I’ll just say it, the doctor was a cocky jerk.  My favorite was when I asked him how he knew it was Crohn’s and he responded with, “I’ve done this for thirty years.  If I say it’s Crohn’s, it’s Crohn’s.” Sure. Ok, but can you please be a little more specific and discuss this disease with me???

He did not have time for my questions about the disease

Nor did he have time for questions about the medications, or the long term plan, and he made sure I realized that his time was more valuable than my concerns.  This was the last time I would be seeing this doctor.  I did not start the medications and I found a new doctor, this time at the Cleveland Clinic.

The new doctor wanted another colonoscopy because, “the one he did was lazy and sloppy.” While waiting for that appointment, I started reading anything and everything I could about Crohn’s Disease and slowly started to eat again because the pain was gone after the colonoscopy.  Just as quickly as the pain arrived, it darted away completely. I was still in denial, especially since I did not have any pain, but I was going to be ready this time to ask questions and find a way to treat this disease without these rotten medications.

I must have atrocious doctor luck

Because when I went back to discuss the results of my colonoscopy and the plan for treatment she told me, “There is no doubt you have severe Crohn’s Disease. You will need to pick one of these four medications.”  When I asked her about treating the disease naturally she responded with a firm, “You will take one of these medicaitons or you will be back here within a month on the operating table so I can remove your colon.” How about that for bedside manner?  As I continued to ask questions, she finally stopped me, informing me I was only scheduled for a thirty minute appointment, and she had other patients waiting.  I looked at my husband as we walked out of her office and stated, “I’m finding a new doctor and I am not taking her drugs.”  “I know,” he said.

And our journey with SCD began…

That August I started cold-turkey.  Well, I had a friend bring a large strawberry malt over as a parting gift to myself, and the next day I started.  It. Was. Hard. There was so much to think about, to plan for, to organize, to prepare, but I was in and, in my competitive mind, I was going to win.  The most difficult part for me was that I never had any “trigger” foods.  Literally one day, one bite, I had pain and couldn’t eat, but I never had the classic “Crohn’s” symptoms.  How would I ever know if this SCD diet was working? It didn’t matter to me, I wasn’t going to slip up, I wasn’t going to sneak a bite here or there, I was going to beat this disease naturally.

In September I saw my newest doctor for the first time.  He reviewed all my medical records starting with the appendectomy and was convinced from the colonoscopies that it was Crohn’s Disease with “significant damage”.

He recommended TNF blocking medications

But felt comfortable waiting to start them since I was clinically in remission.  I liked this doctor!  Not because I was told what I wanted to hear, but because he was patient.  He listened.  He understood my concerns even if he didn’t agree with them.  He respected my feelings.  He was very clear on what he felt should be the proper protocol for someone with my level of disease; he wasn’t going to tell me what I wanted to hear, but he was willing to work with me and see where things would go, as long as I understood the risks.

I had no pain, I was eating, I was maintaining weight, I was running, other than adhering to this diet, my life was pretty normal.  He gave me four months until a follow-up appointment.  More than once he told me he wouldn’t say that what I was doing was the reason I was in remission, but he wouldn’t say it wasn’t the reason either.

“I’m a medicine doctor. I prescribe medicine.”

I didn’t realize it at the time, but he thought I would be back before the four months was up.  I wasn’t…

I don’t like the SCD diet.  Honestly, who would? In my opinion it’s brutal mentally, but all I could think about was staying off those medicines.  On a run one day, a friend asked me about a commercial he saw and wanted to know if that was one of the medications the doctor wanted me to go on.  When I told him yes, he responded, “No wonder you’re willing to eat like this.  Is there anything good about that drug?”

January arrived and I returned for my appointment.  Other than one little spot of discomfort in my lower abdomen (scar tissue from the second surgery?), I was doing well.  A colonoscopy was scheduled for June, a year after my first one, to see what was going on inside me. I was sent on my way after another informative and patient visit with my doctor.  Have I mentioned I really like him, his willingness to listen, to explain, and to take the time I need to feel comfortable with what we are doing to my body?

Slowly, I started to add non-SCD foods to my diet

However, I follow a strict all natural diet, eating only whole foods.  If I eat something that is non-SCD and feel anything (gas, bloating, a twinge of pain) I eliminate it immediately and go 100% SCD until things feel normal again.

I would say I am 80% SCD – 20% whole foods and doing very well; however,  my June colonoscopy was not as promising as I had hoped. The damage had not gotten any worse, but it had not gotten any better.  Was it because I wasn’t adhering to a strict SCD diet anymore or was there so much damage that I could not repair it?  I thought for sure my doctor would want me to go on the TNF medications, but after two long phone conversations with him, it was decided that I would continue doing what I was doing and see what happens.

See what happens because he feels that with or without medication a resection is “inevitable” due to the damage and risk of a blockage at some point, but since I have clinically been in remission for a year with no outward signs of the disease, he is comfortable with waiting.  It is a gamble; I thought about caving and going on the medications mainly so I could eat whatever I wanted and enjoy a beer again, but after my second conversation with my doctor, I was fired up to beat this disease naturally.  If the question was not if, but when would I need a resection, why risk the side effects of the medications if I was doing well without them?

The million dollar question is…

Did I always have Crohn’s Disease and was asymptematic my whole life, or did that ER doctor’s decision to stay home, prolonging the removal of my ruptured appendix, in turn change the course of my health and my life?  Did the weeks of strong antibiotics cause this disease or was it always there and I didn’t know it?  It’s a question we will never know the answer to and I am finally getting to the point that the answer doesn’t really matter.

It’s no longer, “Why me?” but, “Why not me?”

I’m strong enough to do this.  I have an amazing, supportive husband who tries my crazy SCD recipes and although he misses the ease of eating “crap food” he is willing to continue this SCD journey because it works.  Because his wife is getting well.  And because, even though this is not the normal we knew sixteen months ago, it’s the normal we know now.

I know how to go to a cookout, or a family gathering, or a meeting and work my way around food.  I got over the judging eye of others who thought I was just being a “health nut.” I know how to cook for my family and myself, meshing all of our dietary needs.  My husband claims, “You ruined me.” because when he does he processed food it no longer satisfies his taste buds the way it once did.  SCD is our normal now.

To those thinking about starting SCD, I say this – what do you have to lose?

At worst you are going to have to work a little; ok, a lot, harder at planning and preparing food, but you can do it. It is possible.  Healing is possible.  SCD is not some quick and easy fix or a pill to pop to mask your symptoms.  It’s a new way of life.  And you can do it, as long as you remember what it was like to be miserable each day so that you can keep the wrong foods from entering your body.  That memory and thinking about “the green light” (the light that would come on after my second surgery so I could push the morphine button) has made this change a little easier.  I don’t EVER want to feel that way again, and I don’t want to put my family through another battle for my health.

Plan a day at a time. Live a day at a time.  Breathe.

You can’t look too far ahead because you’ll go crazy, but you can look down the road and know that you are giving yourself the chance to be healthy again for a long time. It’s not going to be easy, but it’s not going to be that hard either.  You have to take control of your health and with a disease that seems to always be in control, I like being able to feel in control of my body again.  SCD gave me back control of my body, my life.  Surround yourself with positive people who may not understand what you are doing with your diet, but support it.  Put yourself in an environment that allows you the best opportunity to continue to live. There is nothing you can’t do, as long as you believe you can.  Crohn’s Disease doesn’t get that.

Sometimes when I am running I think about making a commercial for SCD the way they make commercials for the TNF medications.  The majority of the drug commercial involves listing all the complications and possible side effects of the drug. They are scary commercials camouflaged with calming music and happy faces.

What would I list for side effects of SCD? Feel good again, eat again, don’t map out the bathrooms when you leave the house, have energy, look like a healthy person again, have regular poops again, be you again just a little different.  And the best part is, you wouldn’t have to camouflage the side effects.

Crohn’s Disease is a life changer.  But so is the SCD Diet.  Which one are you going to let change your life?source


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