Crohn’s Disease Update

Hey There Smile

I’m sure if you follow my blog you have noticed that I really have not posted much. I don’t know, but I am just not feeling the ‘blogging’ spirit AT ALL. I don’t know if I’m just ‘over it,’ or if the blogging ‘mo-jo’ will eventually come back to me. I’m just going to go with it! I did want to thank all of you for reading- it means so much to me! Life has been wonderful to me lately, I can’t complain one bit. So many great things are happening I’ve just been enjoying life & not having to worry about blogging about it. It’s nice to just come home & sit on the couch to spend time with Craig rather than having to constantly be on my computer.

It’s kind of funny because just a few years, I HAD to have my cell phone with me at ALL times. If I forgot my phone at home, I would have to immediately turn around & get it, otherwise I felt naked without it. But now I actually really LOVE just disconnecting from things. Sometimes I intentionally forget my phone at home, or I turn it off & leave it upstairs.

Anyways, I’ve kind of trailed off…I think you get what I’m saying. Smile

Besides all of that, I love having my blog because I love connecting with readers. Recently on my Facebook I asked how many of my readers were also suffering from Crohn’s disease. Part of why I started my blog in the first place was to connect with other people who have Crohn’s disease. It’s one of those things that is hard to understand if you don’t actually have the disease yourself. Sometimes it’s hard to talk to people about it…since most it the talk involves bathroom issues…and who really wants to sit down & discuss their bathroom habits?! Winking smile (just an FYI: this post is all about my Crohn’s disease & different treatments, so this might not interest you if you don’t have Crohn’s)
crohn's stinks

So it’s nice to have a community of people that can relate.

I thought I would share my latest ‘updates’ involving my disease…and some tips that have helped me.

I know a while ago I shared with you that I was taking Humira (shots every week in my leg).

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Well it was working great for a while, but then about 2 months into treatment it’s almost like my body started rejecting it. It was the strangest thing. It almost got worse than how I was BEFORE I started taking my shots. It was like my body just got used to the shots & they didn’t really help at all.

I went back to my doctor to see what I should do at this point. I was REALLY bad- I was going to the bathroom about 12- 15 times a day EASILY. I had told my doctor from the beginning that I did not want to go on steroids, EVER. I had the worst experience with them before & honestly I would rather suffer with the Crohn’s disease rather than go back on steroids. They were just terrible. I realize that they do work wonders for some people, but I just hate the side effects. (I was on Prednisone for about 2 weeks a few years ago, but I had to get off of it because I felt MISERABLE)

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Thankfully I have a WONDERFUL gastroenterologist (if you live in the Orlando area & need a recommendation for a gastro- please email me Smile ) & he works with me on everything! I actually have never found a gastroenterologist that I loved, until now. He is AWESOME & gets my input on everything…and does NOT force prescriptions on me, like doctors did before. He also always takes the time to answer all of my questions. I remember one time I went to an appointment with him & had a LIST of 15 questions…and he answered EVERY.SINGLE. one of them & did not rush me. Now THAT’s a great doctor!! Open-mouthed smile

So after a few appointments with him, he recommended I try Entocort EC, (another name for it is budesonide, Entocort is just the brand that I was taking) which is a corticosteroid. Corticosteroids are different than traditional steroids. They work very similarly, but they do not have the same side effects as steroids- like weight gain or crazy mood swings. I believe it’s because they enter your blood stream directly, but I’m not 100% sure of all of the differences. What I like about the medication (Entocort EC) is that it did NOT cause any weight gain & it did NOT give me any mood swings (at least that I know of, I guess you’d have to get Craig’s opinion to know for sure Winking smile Just kidding!) like traditional steroids did.

I started out with a 9mg dose- which is 3 pills a day. (each pill was 3mg) That is a pretty high dosage, but we needed to get my flair up under control. I have been in this flair up for about 2 years. He wanted me to stay at that dosage for about 2 months & then drop it down to 6mg (or 2 pills) a day after those 2 months. Then I was supposed to stay at 6mg for 1 month & finally drop it to 3mg (or 1 pill) a day for one remaining month, after that I was supposed to stop altogether.

Well, I got nervous. I didn’t want to stop taking this medication because it was working SO WELL! I have never had a medication work as well as this one did for my Crohn’s. It was like a miracle drug. So instead of dropping to 1 pill a day, I kept taking 2 pills a day for about 3 months…and FINALLY dropped it to one pill a day after those 3 months. And now I am off of it altogether.

My doctor wanted me to be off of the medication altogether in about 5 months after starting it because it is not a prescription you are supposed to be on for a long time. It’s a temporary drug that you need to eventually come off of, since it DOES affect your kidneys & adrenal glands. The only reason that I eventually did stop taking it was because I went to see an Endocrinologist (a blood doctor) & after checking all of my ‘levels’ in my blood some things were off. Nothing major, (I was not in danger) but it was due to the medication. Pretty much what happened was that because I was taking this medication, my adrenal glands stopped making certain hormones (forgive me, I don’t remember exactly which ones they were) because the medication was giving it to my body. So since my body was getting this hormone from the medicine, it stopped making it on its own.

My endocrinologist suggested that I stop taking the medication (since my Gastroenterologist wanted me to be off it a few months ago) & see how my body reacted, and he would take my blood again in a few weeks to see if my body was producing the hormone again naturally. Last week I got my blood taken- and in a few weeks I will get the results. But it feels SO good to be off of the medication. Not that it had any negative side effects on me, but because I just like being on less medication. The less, the better, in my opinion. Currently I am only on Asacol, which I have been for about a year now. (I was taking in along with the Entocort.) I take the 400mg, and take 3 pills twice a day. (6 pills total) I was taking 9 pills a day when I was taking the Entocort, but have dropped the amount of Asacol I’m taking as well. Asacol is a long term medication, and you can stay on it for life. (it’s a really mild medication)

Right now I feel REALLY good! (*knock on wood Winking smile ) It seems like my flair up is under control..and I’m not constantly going to the bathroom. Like I said, I was going like 12- 15 times a day before, but now I would say it’s around 4-5. That’s pretty good! Of course it’s not what ‘normal’ people do, but for someone with Crohn’s disease that is pretty good!

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Of course I still have bad days, I’m sure that I always will. But my bad days are MUCH fewer than they were before. I would say that I probably have a ‘bad’ day (meaning LOTS of trips to the bathroom) about once a week. I think it just takes the right combination of medication/ therapy to get the disease under control, and once it is you just pretty much stay in ‘remission.’ (& pray that you stay in remission..and are not affected by flair ups)

A few tips that I have when managing Crohn’s disease:

1. Find a doctor you LIKE and that you TRUST. This is SO critical because Crohn’s is a LIFETIME disease. There is no cure. (hopefully one day!) You have to feel comfortable & confident in your doctor. If you don’t find another one. I know it’s not easy. I’ve been to about 7 different gastroenterologists before I found one that I REALLY like. Also make sure they are willing to work with other doctors in order to make sure you get the best therapy possible. (My gastro works ALONG with my endocrinologist AND my general practitioner)

2. Inform people that you suffer from this. Of course I don’t mean you have to walk around sharing that you have Crohn’s disease with everyone you encounter. But what I DO suggest is that you inform your boss or your professors, and maybe even some co-workers. Thankfully I have a wonderful boss that is VERY understanding & has NEVER complained about my frequent trips to my doctor’s office…even if they are in the middle of the day. If you inform these people about the disease, they will probably be much more understanding if you have to take a sick day or if you miss a class due to the disease…and they will probably even work with you.

3. Drink LOTS of water, Avoid greasy food & Exercise. These are pretty basic tips, but it’s pretty amazing how MUCH they can really affect you. You need more water than most people because you lose a lot of fluid if you are going to the bathroom a lot. Greasy foods will upset your stomach, even more than it already is. And exercise is just good for you ALL around. I know that it can be hard to get moving, especially if you are in a flair up, but once you get moving you will usually feel better. I am an avid runner, and always have been. My Crohn’s got so bad during my flair up that I couldn’t even run. It was really hard on me, but I just hard to try other things…like the elliptical, incline walking  & the stair stepper. THANKFULLY I’m back to running. I feel like I’m starting over- I have to build my base back up- but I’m just SO happy to be able to run again that I don’t even care! Open-mouthed smile

4. Last but not least, remember to LAUGH about it. I know I might sound like a crazy person telling you to laugh about a disease, but honestly you HAVE to. If you don’t, you will get SO discouraged…and it will really get to your head. I know because it happened to me. I would constantly say ‘why me?! why did I have to get stuck with this disease?!’ But you know what, now I just laugh about it. I laugh because it’s kind of funny that I have to go to the bathroom all the time. It’s funny that I know where every bathroom in Orlando is. (as soon as I enter a place I immediately find the bathroom…gotta be prepared Winking smile ) I also always say that I should own stock in all of the toilet paper companies, because I keep them in business! Open-mouthed smile Just remember, THIS disease makes you STRONGER!!!!!

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As always, feel free to email me- greekyogurtandappleslices@gmail.com- (if I don’t get back to you right away, please forgive me, I promise I will!!) with any questions you may have, or if you just need someone to talk to about your Crohn’s disease.

Have a WONDERFUL week! & GO RAVENS!!!!!!!

Leave a comment

23 Comments

  1. Welcome back girl! I think it’s totally fine to just blog when you really want to, or when you have something like this you want to discuss. Overall, your blog is for you!! Hope you’re doing good :)

    Reply
  2. Hi Holly!! I just wanted to send hugs your way, and tell you that we miss you! But of course, I understand. I’ve cut way back to just doing 3 blogs a week (versus every day), because I also don’t want to feel tied to my computer. But like you said, I just love the community so much that I don’t want to stop completely! :)

    Take care and keep in touch … even if it’s via email every now and then!

    Reply
  3. Amy

     /  January 15, 2012

    Awe I’ve missed reading your blogs. I need to get the gastro’s # I still have had no luck in Jacksonville getting anything done.

    Reply
  4. this is so good to hear holly. I love that your life is wonderful. Blogging can be a bit too much at times and i think there is a season for everything. RIght now your season is healing and moving forward, yea!

    Reply
  5. I love how you are feeling now Holly. I certainly miss your blogs a lot, as they were one of the first I followed ever but anyways-you must do what’s best for you. If right now-blogging bores you-go with it and let see where it goes. Find me on facebook if you want girl-I’d love to still keep in touch! :)

    Reply
  6. I’ve missed you Holly! I’ve been wondering how you’ve been – I’m sure you are pretty ecstatic about the ravens right now!
    I’m glad you are feeling better now – Keep it day to day and only blog if it feels right to you!! Quality over quantity :)

    Reply
  7. Thanks fo the update Holly…I have been wondering about you. :) Keep healing!! We love you.

    Reply
  8. Hi Holly, I don’t even remember how I stumbled across your blog (which is great btw), but I too have crohn’s disease. I actually was diagnosed through an emergency bowel resection. I only really felt a ‘flare’ up for 6 months (without knowing I had crohn’s) and then was rushed into surgery because my intestines were completely obstructed. Since then (2007) I have actually been in remission *knock on wood* and have been on mercaptopurine or 6mp 50mg a day since 2008. It does suppress my immune system which sucks, but it is what it is! Anyway, how are you in terms of your diet? I think that’s will primarily – along with your meds- really help keep your flare ups in control as well as bathroom trips…

    Reply
    • Hi Vicky! THank you for the comment :) Sorry to hear you are suffereing from this disease as well, but it’s SO nice having a community of people to talk to about it! I was ALSO on 6mp for years, but then it kind of started to ‘stop’ working for my body- kind of like the Humira did. So that’s when I have to switch medications. It’s so funny how my body does that. I know some people can be on the same meds for years & years & it works totally fine..but not me. Guess I just have a strange body ;) As for diet- I eat SUPER healthy..like probably too healthy. I cook dinner every night (typically some kind of extra lean ground turkey dish or chicken breasts with veggies & a starch), and for breakfast & lunch it’s typically greek yogurt & fruit..I’m so exciting, huh?! ;) Thanks again for the comment! So nice hearing from others with it.

      Reply
      • Yeah, it’s good to talk to others who are going through similar things so you don’t feel alone! :) That really stinks about the medication and I’m surprised because my gastro told me the longer you stay on one drug with no reactions it’s more likely that you won’t need to change or increase the dosage… however I had bowel resection so that could be why too. Glad to hear you’re eating healthy and I basically eat those things too minus the starch. I find that starchy foods, breads pasta etc and esp processed snacks (which are my favorite of course) really bloat me or cause bathroom issues! Have you kept a food journal to see what affects you and what doesn’t?

  9. Glad you updated and I’m glad you are feeling better too! I hope it continues!

    I don’t have Crohns, but I find your posts on it very interesting, so I appreciate you posting about it.

    Take care! :)

    Reply
  10. Thanks for sharing your story! It’s great that you have such a positive outlook! Keep it up!

    Reply
  11. Glad you’re feeling better:)

    Reply
  12. I’m glad you did a post on Crohns because it is a disease that affects quite a few people and many don’t know much about it. Here to support you girl :) My dad has the disease and I have a lot of stomach/GI problems myself so I hear exactly where you are coming from. You are totally right, you HAVE to laugh about it because in the end it’s one of the best ways to keep going. So glad I’ve found your bloggy! Thank you for the post!

    Reply
  13. janae@hungryrunnergirl.com

     /  January 25, 2012

    HEY GORGEOUS GIRL!! Thanks for the update, I have been wondering about you! What an amazing resource for people struggling with Crohn’s Disease. PS are we FACEBOOK FRIENDS!?!!? CAN WE BE!?!?!

    Reply

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