I'm one of you, just newly diagnosed

[Mattannika]

After suffering from the most horrific pains of my life over the past several weeks, and refraining from going to the ER several times, i have been diagnosed with severe Crohn's disease as of last week. After being referred to my GI for all the typical symptoms, weeks ago, she finally connected the dots of all the symptoms I told her I had and ordered a colonoscopy. I had to wait in pain for 2 weeks for the colonoscopy, noone seemed to take me seriosuly and it was so very frustrating for me and my husband. Why we never went to the ER I really can't explain, I guess it would have been to "real" for me, like an affirmation that there is something seriously wrong with me. I was not ready, so I just suffered. Never again could I go through that. The day of the colonoscopy came and for the first time, all drugged up for the test and completely empty inside, I could actually relax a bit. When I was awake my GI doc came to tell us the news, that it looked like severe Crohns disease and that she had sent several biopsies to get evaluated. She immediatley scheduled a CT scan for me the next morning. From then on things sped up, I finally felt taken seriously and helped! It was, it is still, a shock however. Never had a clue. I've heard of crohn's before, but didn't really know much else than how horrible it can be. Never thought it could happen to me, lol.

Kind of funny how your life can change in an instance and life the way you know it will never be quite the same. It made me take a look at how blessed I am, and be thankful for all the good things in my life, that I was too busy to appreciate every day. I'm not gonna lie, part of me is sad, part of me is angry, and scared. In general I'm still in disbelief. But trying to find peace in the fact that it could have always been worse. At least with a diagnose, I can get drug treatment and I hope my body can start healing.

Since a few days now, I have been on 40mg Prednisone and 40mg Apriso. I don't know if I want to know all the negative info on them, mainly I am trying to be positive and hope they will work and put me in remission, but at the same time I'm scared of the road ahead. Like anyone with this disease, I eventually I hope to kick this disease in the ass! I am learning to be patient and to take it one day at a time.

I am so happy to have stumbled upon this forum, it feels good to know that I am not alone in this and there are people who understand. It makes me sad to read how difficult some of you have had it and I am amazed by everyone else's strength. It's encouraging to hear one can get through the tough and there are better days

 

[Thermo]

Since a few days now, I have been on 40mg Prednisone and 40mg Apriso. I don't know if I want to know all the negative info on them, mainly I am trying to be positive and hope they will work and put me in remission

I think this is what everyone says at first, but you have been diagnosed with a rare disease that has the potential for some serious life altering side effects/complications. It is imperative that every patient learn as much as possible. But you will get there over the years, and believe me you will end up learning more than you would have ever wanted to know. Keep your head up and thank you for sharing your story, stay on the forum as it is a great place to learn and heal. Also don't be afraid of the ER you will most likely have to go a couple times over the years, there is no reason to sit in pain.

 

[Niklovely]

Your experience sounds kind of like mine, in that you didn't feel like anyone was taking your seriously about your symptoms. I too waited in pain, confusion and frustration before I had my colonoscopy. I was given anesthesia and that was the best sleep I ever had since getting sick.

 

[David]

Hi there and welcome

I'm sorry to hear of your diagnosis You're obviously going through a lot and we're happy to help you in any way we can.

You mentioned 40mg of Apriso. Are you sure that is what you were given? I just want to make sure you have the right dosage

Did the results of the CT Scan come back yet? Is the disease confined to your colon or is it in your small intestine as well?

Again, welcome. We're here for you.

 

[Mattannika]

Thanks for your messages. I agree that being informed is important, it's just overwhelming. I am working on it, reading lots to be informed so I can make the best decisions.
David, so currently I am on 4 pills (.375g each) of Apriso. I got confused, thank yiu fir noticing Maybe because they think right now it's severe crohn's? My GI doc first thought to put me on much stronger meds right away after she had seen the results of the colonoscopy. But once she had the CT results, she suggested we start with a combination of prednisone and Apriso, then taper off the prednisone...and monitor each week to adjust dosage if necessary. The CT scan did show that there was something in the small intestine as well, but not much, so it was pretty okay and no surgery needed?
While I was told that the prednisone would make me wired, it seems to have the opposite effect on me. I am exhausted and tired...
I'm still mostly doing liquids cuz I'm afraid to mess things up, now that I feel a bit better due to the drugs and feel like its healing...i am really hoping it'll get me in remission...and then start eating slowly more fiber, more normal. Any opinions or suggestions on that?

 

[David]

As you transition from the liquid diet, you may want to evaluate trying the paleo diet or specific carbohydrate diet. People here have had some success with those diets.

 

[Mattannika]

Thank you all. David, interestingly enough the first book my mother-in-law sent me when she heard my diagnosis was a cookbook based on the SCD Diet. I then bought and read the "Breaking the vicious cycle" and we decided that it's worth a try. It does take a lot of re-thinking the way you eat and cook and a lot of prep and since I am at the very beginning it's quite overwhelming still and exhausting. But I am n my 2nd day back to eating "normal" food, no more liquids! So we'll see how it goes. I think I will look for or create a new thread on my experiences with the SCD diet. I think there are a lot of people out there that are confused just like me by some of it, so that'll be good.
As far as my medication goes, the prednisone/ apriso seems t be working for me. Besides being tired all the time and not being able to sleep at night, which defintely makes going to work during the day tough, I seem to be okay on it. And my cramps and all the other effects f my Crohn's flare have gotten sgnificantly better. I feel lucky I have my next checkup with blood test results this week, and I am hoing thigns look good! SO glad I found this forum, and thank you!

 

[David]

By all means, please keep us updated how you do with the diet. There's a few other people doing the same in the diet forum and a couple threads dedicated to the SCD. The stuck thread in that forum has links to them.

 

[Rachel]

Hi! I just want to say that I know how you feel! I felt all these feelings a year ago. I was scared, mad, annoyed, overwhelmed, why me?, in denial etc. But my advice to you is to educate yourself as much as you can! Even if it sounds scary and you are scared to read about side effects from drugs, educate. Don't be scared. It is better to know what could happen and be educated about everything out there than something happen and you are in the dark. You will be ok and you will learn to manage it. I am still learning and I still get scared, but it is so much better to learn and be educated. Let me know if you have any questions! I am on Prednisone too right now and in a flare. Prednisone can make you feel a little crazy, but it's not you, it the drug. It's just helping get your intestines under control. Let me know if you have any questions!

Also, I have the same side effects from prednisone. Extremely tired lately. Rapid heart rate too. I could just collapse every day. I'm not sure how I make it through a work day sometimes.

And you asked about diet and fiber- I pretty much stay away from high fiber foods, raw veggies, whole grain breads, lactose, and fatty food. Prednisone just kinda makes me feel crummy though no matter what I eat. so be patient Also, I have found that camomile tea really helps calm me down and soothe my stomach. OH! And invest in a heating pad when your tummy is hurting. That help me too!

Rachel

 

[Mattannika]

Thanks Rachel, I hope you are feeling better. Im going down to 20mg tomorrow, think i just got used to the 30mg...but im glad if i can get off this as soon as possible. And im glad im nottalons with those stupid exhausting side effects. I agree, I don't know what I would do without my heating pad! I've been drinking fennel tea, chamomile makes me a bit nauseous