Reached the end of the road

[vonfunk]

Well I mentioned it in another thread, but I guess since I finally told my parents I might as well make it official here.

Next year I am going to lose my colon.

Way back in February I managed to get Norwalk, and it was brutal. That managed to punch through the prednisone and started a flare up. It was very mild at first, not really noticeable. But after a couple of months I had lost enough blood to need my first transfusion of the summer, right at the end of May.

I was in the hospital for a week again in June, with blood clots . Most likely caused by a combination of prednisone, my flare up, being a tubby guy,and my love of tobacco.
Then in July I was back in the hospital with my flare up and was bumped up to 50mg of pred. I then started Remicade, which jump started the healing to pull me out of the flare. and then 2 weeks later I was back in the hospital with a delayed reaction to the Remicade. We gave it another shot a couple weeks ago and within minutes I was in anaphylactic shock.

Last week I had an appointment with my GI and surgery to remove my colon is my only remaining option. Humira is far to expensive, even with y insurance I can't afford it, and the drug program run here won't cover it for UC.

I almost lost my colon two years ago with my initial flare up, so it's been living on borrowed time since then. And for me the disease runs the entire length so as it stands now there is nothing I can save of it.

So next year, probably in June, I will be joining the ostomy club. hopefully it's only a temporary thing, but I seem to be in the 1% of rare side effects so I'm not holding my breath.

 

[Crohn's 35]

Hey you, so sorry you have to go in this direction but as you may have read in other Crohnie's posts it could be the best thing for you! I was allergic to Remicade too and I did go on the Humira, and petered out, now I am in limbo, winging it. My doc thinks the biologics just wont work in my case, I too will find a reaction to drugs no matter if it is
.05% chance...my body will find that chance. Guess I have been on meds too long, and tried everything else. You know I hate the word positive but it maybe what you have to think, because like you say your options are only one way to go. WE are there for you, sorry I cant help with your type of surgery but you know the support is there for you from the others! Sorry I am not much help, just know I feel for ya!

 

[Dras]

Good luck, I hope that you will have a much better quality of life once you have it removed. Looks like IBD had you on a hectic rollercoaster ride this year.

Keep us posted!

 

[Sue-2009]

Hey...Hang in there! I am so sorry to read of your struggles...I lost my colon about 5 years ago, because of colitis...now, I've got crohns in my J Pouch...Oh well...Lifes been decent with the j pouch..On some meds...Nothing helped my colitis..Nothing...I feel for you..head up..forward marching...Stay in touch...stay posting... I hope you are atleast functioning...I know its tough...Peace, and kindness...Sue

 

[vonfunk]

Thanks everyone.
I came to the realisation during hospital visit #3 (which I realised I had left out of the post), that I at most had a couple of years left.
But there is a difference between knowing it's going to happen and being ready for it.

I'm still waiting for a consult with the surgeon, I had one a year or so ago but that is just because my doctor wanted me to know what was involved. this time it's to set a date.

 

[2thFairy]

Wow.. I truly hope this will indeed be a blessing.

 

[Jennifer]

After being on this forum for almost a year now I've become less and less fearful of getting an ostomy. People mention how they feel SOO much better and they're all so positive about it. Sure it takes some getting used to but we're all here for you no matter what.

 

[DustyKat]

Hey von, I wish you all the luck in the world with the decisions and treatments you will have to face in the not so distant future.

:goodluck:

Thinking about you, :hug:
Dusty

 

[CDDad]

I lost my colon back in April and it's only been positive. I feel so great now and love the freedom from the bathroom. Sure the ostomy takes getting used to and has it's own challenges, but for me, it beats what I was dealing with before. An ostomy is so hard to accept, but since I got past that, life is good. Been 6 months for me and it's a perm so I did not have much choice but to accept it and move on.

I don't mean to downplay the significance of getting an ostomy but life may just improve. Hey - I ran 7 miles last weekend - no way I was doing that before!

 

[scifi-enthusiast]

Well, at least your opting for the (somewhat) cure for your disease. Unlike us with crohn's, if we get our colon removed, the disease can always come back in another part of the digestive tract. Well good luck.

 

[vonfunk]

.Hey - I ran 7 miles last weekend - no way I was doing that before!

I can't do that now, doubt I will after.

I'm only doing it because I've run out of options, it's either this or a life of prenisone. When I was diagnosed it took them a couple of months to decide between Crohn's and UC. In the end they went with UC, part of me wishes they swung the other way with their decision. With Crohn's I'd qualify for more treatment options, but the gov't thinks removing the colon is a better treatment than Humira.
But that would only buy me a couple more years, my entire colon is lined with polyps. If I were to develop cancer they wouldn't be able to spot it until it was too late.

 

[lseibert]

Hello Vonfunk,

Sorry to hear that it has some to this, seems like a lot of people get along well with this decision. I'll pray that this will be your feelings in the future, and it will be a blessing. I'm trying to being weened off Prednisone at the moment, at 40 mg from 60 mg, and I feel so crazy anything would be better...I've enjoyed your post on the forum, and I'm sending you best wishes and hang in there.

:hang:
:hug::hug::hug:

 

[acg101]

--------------------------------------------------------------------------------

I don't want to downplay the significance of losing your colon and getting an ostomy but life may just improveI as I removed my colon back in July and it's only been positive. I feel so great now and love the freedom from the bathroom, eating whatever I want, no meds. I hated pred and its side effects. It took very quickly to get used to the ostomy as I knew that my alternatives were not good.


Good luck

 

[Sue-2009]

Hey - I ran 7 miles last weekend - no way I was doing that before!

Oh my gosh...CD---I don't think I could do that even if someone was chasing me!

Sue

 

[kildare crohnie]

my friends brother got a section removed last year he had colitis..he had to stay on the straight and narrow for a year now he's fine no medications he's even back drinking beer every weekend not to much though... hes a new man.

 

[ameslouise]

Hey Von - I know this is a tough decision but better you make it than have it made for you (that's what happened to me when mine ruptured). You will be amazed at how much better your life will be. Hopefully you can get a j-pouch and it's successful, but even if you end up with a permanent ostomy, life will be great. You will wonder why you waited so long!

It's a big decision and a big surgery - but it will be so worth it in the end.

Good luck! -Amy

 

[Lucy]

Hello Von. I'm wishing you all the best and hope this really turns your life around for the better. Good luck.

 

[vonfunk]

It's a mixed feeling.
On one hand with the exception of this summer the UC hasn't affected me all that much. But I know that the surgery was never an "if" it was a "when". I figured I would have lasted longer than 2 years.

But with that said, today is my birthday. On Saturday we're hitting the pub and I can guarantee that my malfunctioning colon is going to cause one hell of a hangover when I wake up on Sunday.

 

[Dexky]

But with that said, today is my birthday. On Saturday we're hitting the pub and I can guarantee that my malfunctioning colon is going to cause one hell of a hangover when I wake up on Sunday.

Might as well give it a good send-off Von!! Good luck with all of it!! Happy birthday!!!

 

[lseibert]

:bdayparty::bdayparty::bdayparty::bdayparty:

vonfunk, Wishing you a very Happy Birthday!! Go out and have a great time!!



:birthday2::birthday2::birthday2:

 

[Manimation]

Jeez I'm not even in need of an ostomy but yall have me feeling alright about it. Happy birthday!

 

[gibby]

Hey, i am facing the same ol fate,much the same story as you, got told a few weeks ago at clinic that my doc didnt want to put me on any more steroids if i had another flare up, so to think about surgery soon....then sods law i come down with another flare up a couple weeks later, get to revisit the topic with my GI on thurs as i have to go in for a scope...
again quite scared at the prospect but beginning to accept that when it happens it will happen, but i am gonna fight it as hard as i can first...hopefully getting put on a clinical trial on thurs for a new therapy to help healing in UC, so hopefully it will work (if i dont end up on placebo that is..)
I know alot of stories are positive on here about folk who didnt realise their quality of life was so bad until they had their colon removed, but there is still plenty potential for things to recur, and complications to happen which is what scares me....gotta think positive though or else we'l go mad!

Hope you have an awesome birthday mate x

yvonne x

 

[juiceit]

Well I mentioned it in another thread, but I guess since I finally told my parents I might as well make it official here.

Next year I am going to lose my colon.

Way back in February I managed to get Norwalk, and it was brutal. That managed to punch through the prednisone and started a flare up. It was very mild at first, not really noticeable. But after a couple of months I had lost enough blood to need my first transfusion of the summer, right at the end of May.

I was in the hospital for a week again in June, with blood clots . Most likely caused by a combination of prednisone, my flare up, being a tubby guy,and my love of tobacco.
Then in July I was back in the hospital with my flare up and was bumped up to 50mg of pred. I then started Remicade, which jump started the healing to pull me out of the flare. and then 2 weeks later I was back in the hospital with a delayed reaction to the Remicade. We gave it another shot a couple weeks ago and within minutes I was in anaphylactic shock.

Last week I had an appointment with my GI and surgery to remove my colon is my only remaining option. Humira is far to expensive, even with y insurance I can't afford it, and the drug program run here won't cover it for UC.

I almost lost my colon two years ago with my initial flare up, so it's been living on borrowed time since then. And for me the disease runs the entire length so as it stands now there is nothing I can save of it.

So next year, probably in June, I will be joining the ostomy club. hopefully it's only a temporary thing, but I seem to be in the 1% of rare side effects so I'm not holding my breath.

Hey so sorry to hear! That sounds serious. If you're at that place you've made that decision, I would suggest trying a naturopath or some complimentary therapy that even if it won't cure you, it might bring you back to a place you don't need it cut out?

It sounds from your post you know exactly what do to - drop weight and stop smoking to start. I can imagine it's tough to kick a habit, but think of what you could possibly be saving!

Look up dave the raw food trucker on youtube.

And have an awesome birthday - having fun can do wonders for health!

 

[vonfunk]

Trust me it should have been taken out a couple years ago, it's been living on borrowed time. Riddled with pseudo-polyps, it looks like one of those pictures that they show high school students to make them scared of cancer, it's a horror show.

One a side, note I am not hungover, which is shocking.

 

[juiceit]

Trust me it should have been taken out a couple years ago, it's been living on borrowed time. Riddled with pseudo-polyps, it looks like one of those pictures that they show high school students to make them scared of cancer, it's a horror show.

One a side, note I am not hungover, which is shocking.

I would say 2 things:

1 - if you are facing surgery and it's a year away, why not take the year and try to see if it works. Seriously, check out dave the raw food trucker. Even if not as a permanent lifestyle, to see if you can get things to the point you might not need surgery

2 - you didn't drink enough

 

[2thFairy]

Not hungover, YEA!!

 

[vonfunk]

I can say for certain I drank at least 8 pints, 3 shots and 1 gin & tonic.
There was most likely more than 8 pints, but the actual count got hazy.

 

[lseibert]

I can say for certain I drank at least 8 pints, 3 shots and 1 gin & tonic.
There was most likely more than 8 pints, but the actual count got hazy.

But, did you have a good time??? If so, good for you!!!:thumleft:

Wish I could drink......:confused2: maybe someday when my flare is over.

 

[Lucy]

Vonfunk after drinking all that I hope you had fun. I would have passed out after the first 1/2 pint. I never had a good tolerance for the stuff. Next time have one for me. Vodka mixed with anything. Lol

 

[vonfunk]

Drinking is one of the few things I'm good at.
It was a great night. I find the further away from my house I have my birthday the more people show up. 2 years ago I tried to have it at my house, everyone cancelled except 2 people. Last year had it at a bar a couple blocks from my house about a half dozen people showed up. This year it was on the other side of downtown, and there was about 20 people showed, among the the gifts I received was a small collection of my own CDs that I lent to a friend earlier this year.