New Member/New-ish Diagnosis

[spikethegoat]

Hi everyone,

I joined a few weeks ago, but this is my first post. I was diagnosed with Crohn's in February of this year. I had been having very minor symptoms for about 3 years prior to that with an escalation last winter that lead to my first colonoscopy, endoscopy, and small intestine cat scan all in one day! ale:

So I'm still trying to deal with/cope with the diagnosis. I'm currently on Asacol HD, and beu..(the steroid that is not prednisone). So I’m taking 9 pills a day just for the crohn's - not including vitamins or anything - which is hard to swallow sometimes (pun intended). I was feeling better in May and June and was almost back to "normal." I have a physical/active job and sometimes it’s hard because I have to miss so much work during flare-ups. I'm currently on my second serious flare-up since February (it’s been going for about 3 weeks now). I'm still very depressed about my situation. It’s hard because I know they are so many people out there that have it worse than I do - or have a worse disease - but it’s hard not to slip into self-pity when your stomach hurts so bad and it doesn't seem like anything will help.

I'm glad I found this forum, my family is very supportive but they've said themselves they have no idea what I’m going through and that I need to find people who do. So hopefully I will find some good tips and support from this forum and when I’m stronger and have come to terms with everything hopefully I'll be able to give back some of that support to others.

Anywhos thanks for reading and letting me rant a little bit...
Caitlin

 

[David]

Hi Caitlin and welcome

I'm sorry to hear you're still struggling That really stinks.

The medication you're thinking of is Budesonide, also known as Entocort.

Out of curiosity, what are your current symptoms? And you mentioned vitamins, are you taking any?

I hope you feel better soon!

 

[spikethegoat]

Thanks for the welcome. My current symptoms are extreme stomach pain (sometimes feels like burning), fatigue, nausea, occasional vomiting and diarrhea. The stomach pain and fatigue are the symptoms that are affecting my life the most right now. As I have had to miss quite a bit of work trying to deal with it. Generally my symptoms are worse in the morning and get better during the day and start to get bad again at night. I feel very weak physically and emotionally right now.

I try to take a multi-vitamin, calcium, (which I took before I was diagnosed) and flax seed oil (addition after diagnoses) when I’m feeling better. It’s hard to take them all the time as it adds to my pill load. But I try…

Thanks for the well wishes

 

[David]

When you say stomach pain, are you speaking of your actual stomach area or lower in your intestines?

Have you had your vitamin D and vitamin B12 levels tested? People with Crohn's Disease are commonly deficient in those and that can lead to fatigue. There's other causes of fatigue of course, but those are two of the common ones that are very easy to check and proper supplementation can make a huge difference if that is indeed the case.

Another common one is the vomiting and diarrhea can lead to dehydration and loss of electrolytes which can lead to fatigue.

 

[SarahBear]

Welcome to the forum!

I definitely understand what you mean about trying not to feel sorry for yourself. I've found that it helps me to just set aside a little bit of time every once in a while to sit around and indulge in the self pity - sort of get it out of my system, so it doesn't come bubbling out every time my stomach hurts. I just take an evening or a few hours and sit on the couch in my pajamas and do nothing at all, because I'm sick and it sucks and sometimes I need that. I'm not sure if that really makes sense at all, though...

Anyway, I hope things better for you soon. We're all here if you need us!

 

[spikethegoat]

Stomach pain in both my stomach and lower intestines. Often my stomach will make really load gurgles/bubbly noises then there will be a sharp pain after that; with general dull ache nearly constantly. I have a doctor appointment on Friday – I’ll ask her about testing my vitamin D and B12 levels.

 

[spikethegoat]

Thanks Sarahbear - I think that is a good idea

 

[David]

What was the result of the endoscopy and CT scan?

 

[spikethegoat]

They said everything was fairly normal and most of the inflamation was in my colon and ileum.

I just started going to a new doctor. The doctor that preformed my procedures was not very good at explaining what was going on and did not have good patient relations in my experience. My new doctor is much better so far and I'm hoping she will be able to explain things to me better.