Waking up from a 25 year coma

[ComaGirl]

I had my appendix out when I was 11 years old, though it didn't need to be removed. Once they are in, they take it. Nearly four years later, I had 18 inches of my colon removed with the odd diagnosis of mobile cecum. At the time, it relieved nearly all of my pain and sufferings.

Imagine my surprise when 25 years later, my primary orders a colonoscopy in hopes to discover my reason for anemia and instead we discover Crohn's Disease. Even more shocking, my gastro informs me that it was most likely the Crohn's that prompted the colon resection in the first place.

I feel like I was in a coma for 25 years, my body reacting to the Crohn's Disease and not knowing until now what monster I'm actually fighting. I feel like I have a lot of catching up to do.

I did a lot of experimenting on my own, trial and error. I don't eat between meals. That's crazy! That's asking to be miserable for hours. I drink a lot of water before meals to hydrate my body. This helps me not have to drink with the meal, which dilutes my enzymes and makes my already shortened intestines work even harder. Above all - I avoid cheese like the plague. I got this tip from a GYN, but trust me, I had to learn that one the hard way that it was the truth. Cheese is not my friend.

I find that my Crohn's has really caught up to me and I wonder, if I had known back then, would I have been properly treated and be managing better than I am now? What if I did better on my own. After all, I made it 25 years! I have so many questions and I'm just getting used to wrapping my brain around all of this stuff my body has been battling for 25 years.

If I ruled the medical world, I would insist on making diagnostic tests for Crohn's available to any patient who underwent appendectomy, only to find out that wasn't the problem.

ComaGirl

 

[David]

Hi Comagirl and welcome!

Wow, that is indeed a frightful reality to wake up to I'm so sorry you're having to deal with this. Mobile cecum huh? :facepalm:

Did they take your cecum out? If so, do you know if they took your ileocecal valve as well?

You mention cheese which is interesting to me. Do you have trouble with all dairy or just specifically cheese?

How are your symptoms these days? Are you on any meds?

Again, welcome

 

[tots]

Alot of people are diagnosed with Crohns when they have their appendix out.
I am sorry you are having trouble! Hope you are feeling well soon!

 

[Angrybird]

Hello and :welcome: to the forum. What a thing to have missed all those years ago! No wonder it came as such a shock. Is aneamia the only symptom you have (which is certainly more than enough) or now thinking back have you had other tummy related grumbles? Have you now been given any meds for this?

You have definetly come to the right place to get helpful info and support regarding this disease so I am glad you have joined.

AB
xx

 

[ComaGirl]

Thankful for this group

I cannot begin to tell you how encouraging the messages of support have been. You all are awesome!

I'm not sure what all they took out of me in that surgery, it was 25 years ago and it was an exploratory as a last result. I wish I knew then how to hang on to my own medical records. That was back in the day of small town family doctors where you believed they would remember your issues for the rest of your life. I try to keep much better track now.

I am experimenting with the CD Diary app on my iPhone and used it to show the graph of my pain scale to my doc yesterday. It was helpful for him to see visually what I'd been going through. I'm going to be more vigilant about keeping up with the entries on that diary. I still have to avoid cheese. It is a highly processed food and less gut to break down the unusable parts of a food that really isn't that good for you in the first place, it just makes me miserable. The harder the cheese, the greater the pain and the longer recovery time.

Had I know about my Crohn's earlier, it might have given me some clues about a mysterious breast abscess a few years ago and ulcers in my mouth as a teen before that fateful surgery.

I've been on Imuran since late January and just got put on Entocort yesterday. My stress level was really high last October. I spent 9 days sleeping on a hospital fold out couch at Dallas Children's Medical Center with my then 8 year old daughter. :frown:

You all have given me a lot to consider and I am so grateful for your input! Thank you so much.:soledance:

 

[skibaboo]

Nice to meet you ComaGirl. I'd say you did absolutely awesome for 25 yrs on your own, I know you wouldn't want to have the wrong diagnosis but wow, well done for coping so well!

And cheese, I have a funny story about cheese. I hated cheese and never ate it. Until I had my ileostomy and woke up craving the stuff. Never been able to get enough of it since, love it. I always joked the 8 units of blood I had during the op must have come from a huge cheese lover lol

 

[Grant]

This rings a few bells, although for me when I was young I had a fair few episodes of "grumbling appendix". Now I'm pretty sure it was crohns. Nothing ever happened back then because it didn't cause me too much grief @ the time & I had no other symptoms.
My Crohns finally flared badly in 1983 before diagnosis in 85.
Best of luck ComaGirl & welcome.
Grant