My Christmas

[JohnathanO]

I wanted to share an expierence I had over Christmas. I have been feeling ****** for some time now and have been back and fourth to my GI with several tests being completed during this time. The last CT scan I had showed a large diseased area in my small intestine and a narrowing near where the large and small intestines meet. My GI said this is normal and tried Remicade to treat the issues. At no time was my GI worried about what was happening in my tummy. I had started to retain fluid because my body was not absorbing proteins and iron properly. I had also been having abdominal pain with more severity lately. I had also been unhappy with my GI so I requested a new one and will be seeing one on January 30th. Anyway, this is where the story goes south.... I had been off and on for a few days on the 21st and 22nd but on the morning of the 23rd I really took a turn and I had never felt that rough in my life. I was freezing and so weak so finally I asked my wife to call the ambulance. I was transported to hospital where I went into shock and my body temp drastically dropped to hypothermic state. I had minimal blood pressure but never lost concesnus. I was somewhat stabilized and rushed into emergency surgery where half of my small intestine was removed due to severe infection. I made it out of the surgery but I found out after that the doctor said the only reason I made it was because I was young and wanted to fight. I spent 14 days in the hospital and finally got home yesterday. I have a long road ahead of me but the doctors think I will recover well. I was a christmas miracle since I should not have lived. I have 34 staples across my stomach and a hole in my side where the drain was. I was lucky that I lived and also lucky I do not have a bag. I have a super long road ahead of me and I hope I can deal with it. I really could use any advice you all can provide to help me get through. I will have a future of suppliments and injections but as long as all goes well I think I can do it. If anyone is in the same situation as me let me know what you do to cope and I sure could use any advice you can supply. Sorry for the long rant but I feel better expressing my feelings.

 

[Terriernut]

JohnathanO, my heart goes out to you. I had a pretty **** xmas in 2010 myself I'm afraid...and ended up with 'Stan'. So certainly, you arent alone on here with some pretty bad experiences.

I'm also having alot of trouble with fluids in the tummy region, so I'm gonna ask YOU...what do they think happened? What caused the infection and the fluid build up..I must assume a perforation, but was is Crohns, or CDiff, or what?

What you have ahead of you is a slow recovery! But...they wouldnt have released you without your bowels working. You may need to low residue diet for a while as well. Dont worry, you WILL heal up. But you need to be careful lifting, bending, etc. And for heavens sake...be patient! Do you have anyone coming in to look at your bandages? Are your stitches all out yet?
:ghug:

 

[JohnathanO]

It looks like the GI missed an infection in my bowel that spread into my blood. It is all crohns related and I hope I am on my way to recovery. The docs can't believe the recovery I am making. I have no bag, I went from liquids to solids within 3 days and I have no food restrictions now. The 34 staples can be removed but I am not having them done until wed. As for the drain hole, it is closed now and I am incharge of changing my dressings. I do get full really quick but hopefully I will be able to expand my tummy a bit. The fluid was from the malnutrition from my rotten bowel. They figure with all the rotten stuff gone, I will be way better. I enjoyed hearing from you, please keep in touch!

 

[Terriernut]

Sounds like you are doing amazingly well!! You must be under 30??? :ysmile:

Please...dont push yourself! I was told repeatedly my brain was faster than my body. They were right! Ended up with a frickin parastomal hernia!

What meds do they have you on now?

And SHAME on that f'ing GI!!! :ymad:

 

[JohnathanO]

I am 36. I am just weaning off of pred, and mesasal right now. I was on remicade but the doc dosent want me on that while I am recovering from surgery. So soon I wont be on anything other than the mesesal. Of course I am also taking suppliments and I started a isolated whey protein shake twice a day to help with the low protein. I also do ensure drinks.

 

[Terriernut]

My guess is that they will put you back on something soon to keep you in remission? Can you change GI's...I know it isnt easy. But considering what you've been through!

And 36...I bet you were in pretty good shape then! Or am I forgeting at my age what 36 felt like?....Oh yeah...I remember...I was in my prime! (still in a bikini actually)

All I know is...Crohns SUCKS. And you know that! But bad GI's...suck more!

 

[bjeffrey]

Jonathan...

I read your story and happy to see there was a positive ending. It can be very difficult to diagnose where and how severe our disease really is until "they get inside".

CT Scan only reads "structure" not what is happening inside the structure, meaning our intestine. It's quite interesting that you make no mention of a colonoscopy which would have provided extensive detail as to the diseased areas. Remicade is certainly not a cure all nor put our disease in remission without lifestyle changes such as diet.

I hope you take the time to research your new GI doctor online to discover their education, specialties, any professional papers they may have written and so on. Invest time knowing your doctor just like you would invest time buying a house. KNOW ALL OPTIONS!

You may want to check out
http://digestive.niddk.nih.gov/ddiseases/pubs/crohns/#what

And now that you have such a delicate GI Tract, you may want to start anew with
http://www.breakingtheviciouscycle.info/

Staying positive gets you three quarters the way there to remission!

Best wishes..

 

[Angrybird]

Wow! And I thought my lead up to xmas was bad. I am pleased that you are now on the mend and heading in the right direction. I agree that you have done incredibly well considering and it goes to show what sheer willpower can do. Remember to take baby steps and do not over do it.

 

[JohnathanO]

Thanks

A person never realizes exactly what he/she has to go through until the time comes. I thank everyone for all of their support. I would have never thought strangers would care so much!

 

[Terriernut]

Yeah, I know, you dont realize. It changes you, be warned. But this place helped me through my worst. If it wasnt for this forum...I dont know that I'd be speaking to you today! So, we try to give back. You know...pass it on.
When you walk down that dark tunnel..you have to do it all alone. But when you come out the other side, things are different. Only a place like this, where people know (weekends are slower!) can you come and have people understand.

 

[Jennjenn]

Hi welcome

I am happy you are doing so well after such a trauma. Like others stated, take it slow. Your mind will feel like you want to do many things but once started your body will feel otherwise. I remember after my surgeries I wanted my mother to pick me up and take me to the supermarket since I was tired of having things picked out and brought to me. Yep it was too soon. We left the cart in the middle of the isle and my mother had to drive me home. Take your time with your recovery!