Diagnosed with Crohn's today

[Carlyn]

Hello all. I am currently sitting in my hospital room feeling overwhelmed with the idea of this new life I have been dealt with. I came into the ER yesterday with debilitating stomach pain. This was not my first episode, but it has not been going on all that long (only frequent pain for about 4 months), and almost all Dr's have suggested that I have IBS. I always knew that my pain was too severe for it to be that benign, but I was so scared of finding out what it really was. Well today was that day, and it is now my reality, but I am trying to remind myself that the way I have been living that past few months with frequent horrendous stomach pains with nausea and vomiting was truly no way to live. It was interfering with my job, plans with friends, quality time with my husband, etc. Not to mention it was making me beyond miserable. At least now I know, and I can start the process of tackling this diagnosis, and learning how to live a life that hopefully does not include as much pain and uncertainty.

I am currently waiting for a double procedure endoscopy/colonoscopy to determine the exact extent of the damage, and the possible need for surgery. I am facing a lot of unknown at this point, but there is a 99% certainty with my diagnosis.

I don't have any advice to offer at this point, but I am grateful to read the advice you all have to offer, along with the success stories, and length of remission for many. I am hopeful for a fulfilling life that is not plagued with stomach frequent problems. I attempt to remain optimistic.

My heart is with you all, and although I don't know any of you, I am so grateful to not feel alone in this journey. I feel connected already.

 

[nogutsnoglory]

Welcome to the forum and let me just say from experience this is an amazing and supportive resource from that lonely and scary hospital room.

I know this must be an overwhelming and scary time for you but the good thing is you know the truth and reason for your pain. Try to look at today as the positive beginning and start to tackling a problem you have faced with no treatment for some time. Now you will be treated and hopefully it will be successful and allow you to resume a normal life. People do live pretty regular lives with Crohn's that is controlled.

 

[lblair]

Welcome it is life changing and scary put this forum is great for support!! Praying for a positive outcome for you!! Keep us posted!!

 

[highlandsrock]

Hi Carlyn

Sorry to hear you're likely to be joining us Crohnies. At least you've made a large step to finding out exactly what is causing your pain and that gives you the chance to get treated properly and start on the road of taking control.

You are at probably the scariest point on the Crohn's journey as it takes some time to come to terms with all the implications of the diagnosis. Once you find the right treatment for you then there's no reason why you can't return to a normal, pain free life with only a few concessions to the Crohn's.

I spent many years pretty much in remission and I'm currently two and a half years without Crohn's medication.

Let us know what the scopes show

 

[RZman]

Hello,

You didn't mention how you were diagnosed with Crohn's in the ER. I don't think you can be accurately diagnosed based on symptoms without a proper colonoscopy and endoscopy. I was misdiagnosed with Ulcerative Colitis for almost 30 years until I had a capsule endoscopy and they determined that I have Crohn's. None-the-less, your experience is real no matter what the diagnosis. My best advise is to keep from getting stressed out and roll with the punches. Ask the doctors a lot of questions and question the doctors if something doesn't seem right. This is a critical time and you need to make sure you get excellent medical care. Don't settle for less and remember that you will grow stronger as a person as a result of this experience.

 

[Carlyn]

Hey everyone, I wanted to keep you all posted on how I am doing. Today is day 4 in the hospital, and I am getting antsy, and ready to go, but it looks like I will be here 2 more days minimum.

As you all know I am newly diagnosed with Crohn's. It is not a 100% official diagnosis as they have been unable to do a combined endoscopy/colonoscopy as originally planned, but due to the degree of dilation, swelling, loops, and damage to my small intestine, combined with my symptoms (months of debilitating stomach pain, nausea, and vomiting), according to the Dr's it is unlikely it could be anything but Crohn's. I have surrendered to this diagnosis, as I have been suspecting it for a little while, but waiting on insurance issues to have the testing done, and definitely in denial that it could be something so serious.

When I came in a CAT scan determined that I had a perforated bowel, and free air in my belly. I was almost rushed back for emergency surgery, which in the end did not happen. Apparently I do have a slight perforation or tear, but only a small amount of air leaked. Due to this area of my small intestine being so thin, I cannot do the colonoscopy until my intestine has recovered quite a bit. I am on 2 antibiotics (Flagyl being one of them...I hate Flagyl!), and I am on Mesalamine. I am still adjusting to popping pills so frequently, and being that I am a RN myself, I am so paranoid about what all these meds are doing to my kidneys...and body. I know they are completely necessary, but I just hate it all.

Yesterday was my hardest day. I spent most of the day crying, and every time a Dr came in to talk to me (I currently have 4, all with different suggestions, all with different plans of care), I would start crying as much as I would try to hold back the tears. I still can't believe that this is not just a horrific nightmare, and that I am not going to wake up a healthy girl again. I don't mean to sound so pitiful, but I just don't understand why this happened to me. I have already had a rough year with an earlier diagnosis of having a bicorunate uterus, which means my uterus is mis-shaped and would prevent me from being able to carry a child to term. This brought me months of sadness and tears, as I have always wanted children (and I am a labor and delivery nurse), but this new diagnosis is on a whole different tier of difficulty. I know I shouldn't be so pessimistic, but I keep thinking that maybe the world is telling me not to have children. 2 different conditions, both making it very difficult to bear a child.

On a more positive note, I have the most amazing husband a girl could ask for. I have been married a year in May, and my husband is my rock. He has been the most supportive, loving, and strong man, and I don't know how I would be dealing with this without him. He reminds me that we WILL get through this together, and we will find happiness again. I certainly hope so, because I love our life together, and I don't want to let Crohn's ruin that, or who I am. I also have the most incredible supportive group of friends, who have been in and out visiting, and bringing me cheer (and my husband food since I will be on a clear liquid diet for weeks..another boo!). I also have a loving and supportive father, sister, and mother in law in my life (my mother passed away when I was 23 of a brain aneurysm, and I am missing her terribly right now). I do have a lot to be grateful for, and I am reminded that life is too rich to let this bring me down. I need to make that my mantra.

I cannot even begin to tell you how much it meant to me to find this site, and to get your responses to my post. It made me feel like I belong to a group of people who can sympathize. I hope you all had a better weekend then me! Enjoy today.

 

[Dragonfly72]

It will be okay, thinking of you and sending hugs and support!

Xo
Michele

 

[Carlyn]

Thank you Michelle. I appreciate the well wishes.

 

[Club]

Oh my you have had your share of trouble and heartache! This Crohns thing is not fun and I feel like it has robbed the joy out of my life! Please know you are not alone and I will keep you in my prayers! Hugs!

Club

 

[Tesscorm]

Carlyn, I'm so sorry you have to deal with this. I don't have crohns but my son was diagnosed when he was 16. As was said above, right now, truly is the scariest time. It seemed surreal when we were given my son's diagnosis.

When diagnosed and inpatient, he did one week of IV flagyl and then did six weeks of exclusive enteral nutrition. He responded very well and supplemental EN (with a regular diet! :thumright was his only treatment for the next 18 months. Unfortunately, it wasn't enough to eliminate all his inflammation and he recently started on remicade.

However, once EEN put him into clinical remission, he was able to get back into his regular lifestyle. He finished high school, worked for a year, will be going away to university in September , went back to his hockey and going out with friends, etc.

Yes, there have been some adjustments - ie he did his EN (both exclusive and supplemental) through NG tube every night and now goes for remicade infusions every six weeks. His friends have been incredibly supportive and this has certainly helped.

Try to deal with this one day at a time (I know it's so easy to say but I have been there and it does get better), you are on the road to recovery. You may need to find a 'new' normal but, hopefully, your treatment will get you moving in the right direction soon!

:ghug: