A Girl Can Dream...lol

[BigRed]

Reading through this forum, kind of day-dreaming about a life without all of this mess anymore...and dddaaaannnnngggggg I'm a jealous girl.

I can't tell you how many times I've joked about giving up & just wanting my ziploc baggie already. har har. But, it certainly seems like once the adjustment period is over, quality of life is dramatically improved. I guess my docs feel like I still have plenty to work with. There can't be much, though! Three resections & all of them have taken part of the large...so I can't be far away.

I've always wondered something, though. Isn't Crohn's known to attack anywhere in the digestive tract? So wouldn't removing the guts only make the stomach, esophagus and all that jazz privy to becoming diseased?

Just wondered if I was making that up in my head or if it really is time to think about fighting to have this done.

 

[Kris]

I always thought the same thing. I asked my doctor that question after my surgery and she said that Crohn's usualy follows the same pattern in the body. I've always had it in my large intestine and the last part of my small (for 14 years), therefore it would be rare to get it in other parts of my body. It is MOST likely to reoccur at the resection area. I hope she is right. It seems that the opinions of our doctors have been changing a lot in the past five years. They seem to move towards surgery as a solution a lot more these days. That's just my opinion though.

 

[ameslouise]

Hey Big Red - That's a good question.... But, if the affected section is bad enough and medicinal therapies haven't worked, then there's really not much choice but to take it out.

I'm a new bag lady and SOOOOOOO happy. Can't tell you how good it feels to sleep 6-7 hours at a stretch! Surgery is usually called a "last resort." I have said this many times before but in my opinion, it should be looked at as a treatment option.

Good luck with the Humira. When do you start?

-Amy

 

[BigRed]

I've been begging for a year and a half now to talk to a surgeon about doing this...and they keep putting me off. Cocktail after cocktail, nightmarish side effects, terrifying allergic reactions...I'm seriously just sick to death of it all. You're 100% right though, sooo much has changed in the last 5 years. While I'm curious what the next 5 will bring, I'm rapidly losing faith that any significant changes will occur.

The Humira should start in the next week or two. Blood test results should be back, and TB test was completed, with an official negative result. (Although...in my opinion, the TB skin test showed a positive result...but what do I know about fancy things like rulers and measurements...lol)

I really was surprised to read so many positive stories in this forum. It's actually giving me a little bit of hope that maybe the worst-case scenario isn't so bad after all.

And thanks to you, Amy...you've inspired me to look for the CCFA walk here in Dallas. Didn't even know it existed! Hopefully I can get a team together & be well enough to actually walk it!!

 

[CDDad]

Hi Big Red,
I hope taking out the colon, doesn't make the small bowel put out the welcome mat for Crohn's to invade next. But, my doc still has me on Humira after my Proctocolectomy to help prevent further problems.

I'm one of the success stories you might have read about. Life is good now, on and on.
Surgery was a very tough bear, but time passes and one day it's just a memory. You've had 3 so you know the drill. If you do need one last surgery, hopfully it will do the trick for you.

I do think about the fact that I can get sick again in the future. That would suck so much so I just try not to entertain those thoughts.

Good luck with the Humira!

 

[Nyx]

I think we all think about getting sick again..for me it's a real possibility as I still have 2/3 of my colon (but thank goodness no Crohn's anywhere in my system at the moment). Hence the yearly colonscopies for me, just to make sure. But, that being said, my doctor doesn't have me on any meds right now, and I have no other symptoms of the Crohn's taking over again. I find it remarkably easy to forget about these worries though, as I'm really living again and it's wonderful

Good luck to you, and hopefully if you have to go through this, you'll come out better on the other side.

 

[Terriernut]

Big Red (love the name!)
I too am grateful to be living a relatively normal life right now. But I also worry about getting sick again! My sigmoid part of the colon was removed in emergency surgery on the night of the 22nd of Dec. So far I have only been on pentasa. GI wants me on Imuran. So far I've not filled the prescription. I dont like the sound of it. I also note that there are far too many of us that flare just as much on it as off!

I'll be asking for LDN. Dont know if I'll get anywhere though..GI's have relatively thick skulls...have ya noticed!!?? For some stupid reason....I really thought once you removed the colon entirely...we should be done, finis...nada to meds. Sadly that doesnt seem to be the case most of the time. So, if you find a med that works for you, and you can avoid the bag. Do it while you can! The bag was a life saver for me, no doubt about it. But if you ask me....I'd rather just be a normal human being without a bag, and no crohn's. But such is life! Yes, the bag can make your life almost normal again. But I sure as hell miss my body from before it. Get laparosopy instead of emergency surgery if you have it done. They opened me like a xmas turkey, and frankly...well. It's not good.:yfaint: But I'm almost 50, so the muscles cant recover.

Be proactive about it!!
:kiss:
Misty