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Newly diagnosed. First Post. Scared

My name is Christina Koenig I am 32 years old. I have always had stomach issues off and on that I referred to as "IBS". My mother has had Crohn's my whole life and I guess I didn't want to know if I did because her experience was terrible. In the past year or so I have had a lot of odd symptoms beginning with a lot of chest pain, strange pain in various areas of my rib cage, tingling and numbness in my hands and feet, and strange episodes of flushing followed by quick trips to the bathroom. I will break out into a sweat and feel terrible and then after I evacuate feel better but exhausted. Recently I have become anemic and am getting B-12 injections. I get weird muscle pain and twitches like pressure behind my eye accompanied by headaches and the back pain is awful. When I'm having an "attack" I have terrible back pain in my kidney area that accompanies it. I also suffer from anxiety. Not sure which came first here, the chicken or the egg. The symptoms certainly CAUSE anxiety, but getting stressed and anxious makes them worse. It's a vicious cycle. I try to manage it with cognitive re-framing and lots of support, but the occasional .25 mg of xanax never hurt anyone either It works really well for me. SSRI's DO NOT agree with me. I had a colonoscopy Thursday. Everyone was right, the prep was the worst part and the procedure was not bad. I have a 6cm portion of my ileum that is diseased, the rest of my intestines look good thankfully. I begin Entocort tomorrow, and we will see how that goes.
I am scared right now. Scared because my Mom's was so bad, she was always very sick with some very scary symptoms.

Currently I am nervous about the Entocort. I guess I didn't present because I was having terrible stomach pain. I feel like mine is possibly more arthritis related or something? And I am not sure the Entocort is what I need, but if the Dr. Says. I te and think the idea of steroids just scare me. Typically meds turn out more of a nightmare than a help for me. I have a sensitive system and often they cause so many side effects.

I know this is pretty general. I guess I am just scared right now. Really scared. I know how ugly it can be I watched my mother. I don't want to discount the fact I may be different and everybody is different, but I feel like everything was just coming together for me and I'm scared my health will now throw a wrench in it. I am newly engaged about to be married to a wonderful woman who accepts my previous marriage and 3 children whole heartedly. I had an abusive childhood and was a highschool drop out, and have come back from a GED to having a Bachelor's Degree with honors, and being one year away from My Licensed Professional Counseling Degree.

I am scared I may not be able to work etc, because I know how bad it can be. I don't want to get ahead of myself, but this is the stage I am in. I wish I would wake up and this was all a nightmare.

Anyway I am happy to be here.
 
First Christina, welcome to the forum! Please do not compare your Crohn's to your mothers, if you go through and read the stories of other members you will see that there are a whole range of ways Crohn's can affect a person, and while some will have a few similarities this disease manifests itself uniquely in each individual. I hope Entocort works for you, it didn't work for me. Entocort is one of the milder medications used for Crohn's. I have had Crohn's for over 20 years and been med free for a large portion of that time.
😄

HD
 

David

Co-Founder
Location
Naples, Florida
Hi Christina and welcome to the community. I'm so sorry to hear what you're going through, you poor thing :(

With the symptoms you describe, I wonder if the doctors have ever tested your magnesium level? If so, what was it? I ask because a lot of your symptoms can be attributed to magnesium deficiency which is VERY common in people with Crohn's disease.

All my best to you.
 
Thank you David!!

I will definitely ask my GP about Magnesium for sure. She is pretty thorough about that and checked everything imagineable when she found my B-12 so low, but I will for sure double check!!

Thank you!!!



Hi Christina and welcome to the community. I'm so sorry to hear what you're going through, you poor thing :(

With the symptoms you describe, I wonder if the doctors have ever tested your magnesium level? If so, what was it? I ask because a lot of your symptoms can be attributed to magnesium deficiency which is VERY common in people with Crohn's disease.

All my best to you.
 
Hi! Thank you for the welcome. I definitely see everyone is unique I am just saying from purely venting fear perspective that my mother suffered a great deal and the whole course of her life was DRASTICALLY changed from Crohn's. I just hope and pray mine is different.

Also when you say med free a large portion of the time I am curious. Because I was just dx'd and my Dr. said I would have to be on some kind of meds forever. ? So there may be a possibility I may not? Or more appropriately. How are you able to do it without meds? I'm just very curious right now so I appreciate any info.

First Christina, welcome to the forum! Please do not compare your Crohn's to your mothers, if you go through and read the stories of other members you will see that there are a whole range of ways Crohn's can affect a person, and while some will have a few similarities this disease manifests itself uniquely in each individual. I hope Entocort works for you, it didn't work for me. Entocort is one of the milder medications used for Crohn's. I have had Crohn's for over 20 years and been med free for a large portion of that time.
😄

HD
 
hiya.im sorry you are going through this and it can be very scary and somtimes lonely. but this is a great place to go. ive always had a hard time with anxiety and stress. i used to take benzos for it. i got addicted to them and they made me numb. i got off them and tried other ways to deal with my anxiety. hot cups of tea,walking,meditating,kung fu,nature. to me having a positive attitude is where it began. hope you find your way.
 

David

Co-Founder
Location
Naples, Florida
Thank you David!!

I will definitely ask my GP about Magnesium for sure. She is pretty thorough about that and checked everything imagineable when she found my B-12 so low, but I will for sure double check!!

Thank you!!!
Be sure to get the specific level magnesium tested at if she did test it. The normal range isn't very good for the serum magnesium test which I can explain when the time comes.
 
I have had Crohn's for more then 20 years, old school thought on the disease was that in remission you did not necessarily need medication. This opinion has shifted and now doctors believe for the most part that even in a good remission you should be on some type of maintenance medication to prevent future flare ups.
😊
 
Hi Christine,

Like you, I saw my father go through terrible spells with Crohn's. He was flaring so bad when my mom passed that he could not go to her funeral, but because I knew what it was like watching him, I completely understood how heart broken he was and how it upset him. Now, I understand the feeling of not being able to do something, because I am flaring. Yes, when I try really hard to control it in my mind, I flare even more. So, if I could cognitively correct it, I would, but I cannot.

When I had my first flare back in 2005, because of my father's history, the doctors suspected what it was. So, as bad as it was watching my parent suffer, I also learned how to help myself. You are different and when you read the boards you will see how different you are. What you will also see is how some symptoms you didn't relate, might be related to Crohn's. Will that increase/decrease your anxiety? That is where it is all up to the self-talk, which as an aspiring LPC you know. Cognitively, it is easy to tell ourselves when this happens we will do this or that, but when in a flare and the symptoms come about we cannot cognitively make the Crohn's stop. We will only make it worse, because we are trying to control it in our minds rather than accepting we are in a flare and we have to relax.

Chemically, our digestive system is out of whack, which may also mean cognitively we are out of whack, because the same chemical receptor in our brain, serotonin, is also in our digestive system. If it helps you to take something to relieve anxiety, realize there might be a chemical deficiency in your brain.

Having more education at times, can be a detriment, because it implies more education, leads to more problem solving. More education does lead to more problem solving, but how the problem will be solved may not be what we desire. With Crohn's, I realize maybe I cannot pursue my PhD, which I was on track to doing. Maybe I am going to have to figure out another line of work, rather than the academic track. Getting another master's might be it, or working from my home as an instructional designer might be it. Or, get another master's in something I enjoy and hope my Crohn's does not flare. I don't know the answer, but like you I am scared about it all and cognitively do not let that rule my world and instead am taking one step at a time.

Continue your pursuit of your LPC. Take the medicine and see if it helps. Congratulations on your engagement and do all you can do to keep your spirits up! Having a wonderful support system at home is huge!

All the best,

Donna
 

nogutsnoglory

Moderator
I know being diagnosed is scary and you have seen firsthand how bad this illness can get but it doesn't have to be that way for you. Hopefully with the right treatment and diet you will go into remission like so many others have. Many live with crohns but have a wonderful life.

You are now engaged to the woman you love and have a bright future for you and your kids. Chin up, you will get through this storm. We have a gay & lesbian forum
on here as well and you and your partner are welcome to join us http://www.crohnsforum.com/forumdisplay.php?f=296
 
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