Crohn’s Disease: The Answer after Years of Searching

by Kristi on January 5, 2011 · 10 comments



I just realized today that when you search for years to find an answer to a problem the ending is generally a surprise.  I finally do have an answer but it was something that I didn’t expect.

Probably because I didn’t really expect ANYTHING so to now have a name to my problem is pretty darn shocking. I really did think it was random food sensitivities getting out of hand. I’m letting myself have a little pity party tonight. Mainly on the premise that no one likes to hear ‘incurable chronic disease’ in response to ‘what the hell is wrong with my body’.

As I talk with Dr. Google tonight, really it seems obvious. Crohn’s Disease, I liked the Mayo Clinic writeup the best.

Feel free to skip the rest of this post because talking about delightful problems such as IBS, stomach issues, and other things isn’t very pretty. But why hide the ugly things? I like to think that my comments might help other people if they are having similar problems. It’s embarrassing but it’s life.

I just couldn’t figure out WHY I would have such random stomach problems after I got pregnant with Griffin. Really though, I had a few indicators before that, and even before I was pregnant with Sam. Not as much but it has definitely started in the last five years.

2007 – Flirting with being lactose intolerant

2009 – Clear Liquid Diet started

2010 – Still on my Diet

2010 – Moving on to something new

2010 – Trying a NEW diet and eliminating everything!

Even after going to the GI in 2009 and being fluffed off that I was stressed, needed more sleep, and it was most likely IBS which is so common. This was NOT common though. It was almost every day. Not normal. I wanted more answers and had a Flexible Sigmoidoscopy completed that showed mild inflammation, and several polyps that were removed. I was told to come back in six months for a full colonoscopy to just check the polyps but after thinking nothing was wrong, I went on to other strategies.

It had to be my diet. Food comes in, food goes out! Something was wrong there. After months and MONTHS of frustrating food tests, I still couldn’t figure anything out.  Having one food after another become a problem for me was so frustrating. Blood tests, stool tests, crazy tests showed that I was low in iron and Vitamin D, and that my intestines seemed to be quite inflamed and they recommended a colonoscopy. Yes, yes, it had been a year, I needed to do it but with my jobs changing up and several doctors visits, no private insurance would insure me at the time and I had to wait another few months to get on the new insurance with my new company.

Finally, at Thanksgiving my naturalpath had no clue what else to offer for me and said to do a water diet for four days to reset my system. After I cried, I went out and had Chick fil a, McDonald’s the next day, a huge Thanksgiving dinner, and continued to eat ‘bad’.

Which is why it shocked the hell out of me when I seemed to be ‘cured’. Oh, random foods seem to give me a few problems here or there but going completely back to normal made me wonder. I chalked it down to being on such a restrictive diet for three continuous months with no cheating that my body got rid of all it’s toxins and was feeling a little happier.

Since I had already made my new GI appointment to get the colonoscopy, I knew I had to follow through with that. So that is what I did today. I was on a liquid diet yesterday and let me tell you, drinking down 64oz of Gatorade with a full bottle of Miralax is kind of disgusting! I am thankful I didn’t have to drink that other drink that people talk about.

It wasn’t that bad though. The procedure was fine, they put me under with some fantastic Versed and Demerol and I woke up after feeling slightly crampy and completely loopy. Being loopy is kind of amazing. I was having some crazy dreams. I do love being put under though.

When the Dr came to talk to us he did say that colitis was found. Lots of scarring in the colon. Inflammation in the ileum, and other random parts of the intestines.

Apparently that is most consistent with Crohn’s Disease. He took several biopsies and sent those out and gave me a prescription for Entocort and talked about a few other drugs to control the inflammation.

Reading over all the websites tonight, it seems that I have a mild version. It’s not as if I’m running to the restroom all the time. I have mild cases of IBS and now that I can figure out what foods to avoid, really work on my diet KNOWING that I have a specific disease that I can modify it after, I should be perfectly fine.

I have an answer now. While tonight, I’m getting used to applying this specific label to my problems, this is what I wanted. It could have been SO much worse.

I am so thankful that it was not colon cancer.

I am so thankful that I am happy, healthy, and live an amazing beautiful life. So this is a good thing.

{ 9 comments }

1 Marcy Massura January 6, 2011 at 6:46 am

Oh hun. At least you know. And I remember as I watched you eat your sweet potatoes that day, when we talked about it and I mentioned Crohns to you…you said the doctors still weren’t sure…..There is power in knowing. And you will learn to deal with this…
Marcy Massura´s last blog post ..AdTalk- When stick-ups were funny

2 Kristi January 6, 2011 at 6:49 am

Thanks Marcy!
Kristi´s last blog post ..Crohn’s Disease- The Answer after Years of Searching

3 Anna January 6, 2011 at 8:12 am

Oh Kristi… I’m sorry you are going through this. I am glad you know what to call it. I remember going through this same process back in 2003 and having tons of issues before that… missing work, etc… not knowing why I was basically sick 24/7. And finally getting my incurable disease label. It was a rollercoaster of emotions… but in the end, it’s just like you say: it’s something you can manage, now that you have the info you need. I’ll lift up prayers for you my friend. <3
Anna´s last blog post ..Preston is home- and now the road to recovery begins…

4 Kristen January 6, 2011 at 9:00 am

It’s good that you know and hopefully you will be able to get it under control. I am so glad it wasn’t cancer as well!

5 Christine January 6, 2011 at 10:02 am

Kristi, I remember well when a good friend’s son was diagnosed with Crohn’s in his early elementary years. I learned a lot about it along side my friend and I am so glad that your case is relatively mild. If you ever want to talk with someone, my friend is very invloved in the Crohn’s/Colitis world in LA. She does the walks, runs, fundraisers and knows ALL the doctors because she became one of those warrior moms in order to best help her son. She is a great person and full of information about this so I know she could offer all sorts of kindness, info, and support if you ever want it. And have that pity party – you do deserve it – for a little while. I hope that you will find the following the doctor’s eating instruction, along with any medications, will really improve your symptoms and decrease any flare-ups.

6 Kristi January 6, 2011 at 10:10 am

Thanks guys!

Christine – I think I would like her contact information, just in case. With both kids having horrible problems (both are on Miralax right now and we have to take GG to a GI appointment this week if he gets worse), I am now terrified that I will/have passed the gene along to them.

7 Debbie January 6, 2011 at 2:50 pm

Hi Kristi,
I am sorry about the diagnosis! At least you know! Is this what the Dr’s absolute conclusion was?
It is always better to have answers! You are tough and strong and will get through it!! Especially now that you have the answers!

8 Angela Bridgford January 6, 2011 at 4:57 pm

Hi Kristi,

Sorry to hear about the diagnosis. Not sure knowing makes it any better…stay strong! You deserve that pity party for sure.

Hugs and prayers are being sent your way!

Love,

Angela
Angela Bridgford´s last blog post ..Leading Up to New Years

9 Kim/hormone-colored days January 7, 2011 at 1:39 am

Wow! That is big news, but at least now you know and hopefully it’s all uphill from here. {hugs}
Kim/hormone-colored days´s last blog post ..New Book- Manifesto of the Gifted Girl

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