New to crohn's and feeling slightly overwhelmed

[jason d]

new to crohn's and feeling slightly overwhelmed

Hi everyone,

I would like to say first that i am new to forums and after browsing for a little while i feel great joining this one everyone seems very supportive and knowledgable.

To me my road to crohn's diagnosis seems kind of a strange one but looking back i feel i have probably had it for a while and kept ignoring the symptoms.

i have always had some up's and downs with bowel pains and D. It would come for a couple of weeks to a month and then i would be fine for a while. At my job i actually have the nickname EP (emergency poop). then starting 2 months ago i started with what all my doctors thought was a sinus infection, couldn't breathe through my nose and headache pain that got worse and more constant every day. went on antibiotics which did nothing and after 2 weeks i started seeing halos around every source of light i looked at. i got very light sensitive and my eyes got extremely painful and my vision progressively got worse. after another walk in clinic and another anitbiotic things still kept getting worse and i ended up in the er for the facial pain and vision problems. They ran a ton of tests including lumbar puncture and couldn't find anything, gave me some pain killers and eye drops and told me it will get better with time as well as making a referral to an ent.


Then the bathroom visits started getting worse with blood and about 20+ times a day. i had no appetite and lost about 30lbs over 3 weeks. then to top everything off my feet started to sweell up like balloons and the joint pain was to the point i couldn't walk.

My ent started the process of putting everything together but was thinking down the lines of vasculitis and wegeners syndrom which after a quick search on google scared the heck out of me.

I am so thankful that on my third trip to the ER in 2 months for the pain i saw a great doctor that said i had suffered enough and decided to keep me till they had a diagnosis.

First result i heard through the haze of pain killers was my sed rate was 101 and thats when they admitted me to the hospital. ct scan came back with moderate to severe colitis and they decided to do a colonoscopy which came back consistent with crohn's, mainly in the terminal illeum and ascending colon.

i think i'm still a little in shock i never would have thought crohn's could cause all of those symptoms i have no familly history of it and really knew nothing about it.

the good news is that within 3 days of being on prednisone 100mg/day feet eyes,feet and bm cleared up and go better and after 6 days was discharged and put on prednisone 50 mg till i follow up with my gi in a few weeks.

I'm sorry for the long post i feel like i just had to get it off my chest and i'm very thankfull for the info i have gotten off this forum in just a couple hours of browsing.

 

[Trysha]

Hi Jason,
Welcome to the forum.
You have certainly had an intense introduction to Crohn's and it is good that you now have been properly diagnosed and treated.
Walk in docs may have their place but cannot replace a regular family doctor for consistency in diagnosis and treatment in conjunction with your GI.
It is very good that you went to emergency----way to go for proper testing.
A regular GI even better.
The future will hold various approaches in your treatment after the prednisone.
Feel better soon
Hugs and best wishes
Trysha

 

[jason d]

thanks Trysha,
I cant wait to get to my first GI apt in 3 weeks and get some more information and a plan of action. Is there anywhere on the forum you can recommend for me to check out some of the more not so fun sides of the pred?

 

[Trysha]

hi Jason,
If you go into "search" at the top of the page and then enter prednisone in search wiki, it will bring you to the article by David.
You could also google prednisone side effects and get some info that way.
Cheers!
Trysha

 

[Angrybird]

Hi Jason and :welcome: to the forum. It sucks about the diagnosis but I am glad you were finally able to get testing done and a treatment sorted that has already improved things for you. Have a good nosy around the forum and right down any questions that pop in your head, you can then take these to the appt so you get the info you want. Take your time at the appt and do be rushed, you need to be able to feel that you understand all that is being said and that your are happy with the treatment plan that gets suggested. Also have you been given a calcium supplement to take whilst on the prednisone? If no please get onto your doc about this quickly as this is something you need to be on when taking this steroid.

I hope you continue to get better hun and keep us updated on how you get on.

xxx

 

[David]

Hi Jason, I'm so glad you joined. Thank god for that one ER doc who finally took control of the situation!

It's understandable that you're overwhelmed. My suggestion is to educate the heck out of yourself about this disease. Become an expert. Now, some of the things you'll read are a bit scary, but the more you educate yourself and take control, in my opinion, the less likely the scary things are to happen because you will be proactive.

For example, since you have a GI appointment in a few weeks, you may want to educate yourself about what vitamin and mineral deficiencies (read that) are common with Crohn's Disease. You can then request that you be tested for them. And what dietary changes might help?

We're here for you anytime. All my best to you!