Nervous....

[lotte26]

Hey Guys
So I went on holiday for two weeks had about 6 days where I could do a little bit. But my bloody crohns got so bad! It was so infuriating which I think made it worse. Anyway I am back home now and relaxing, on my new iPad I got for myself, and feeling quite nervous.

Only two weeks till I get a full proctocolectomy and ileostomy! I have read like all there is to read about ostomies, but I am still freaking out a bit. I have like the lowest pain tolerance and I am just so worried about how I will feel post op! I am being reAlly positive about it all and looking forward to afterwards when I will have some normalcy back... But I guess being with my mother for two weeks kind of freaked me out, as every time I would mention the op she got really emotional and started blubbing. Now I am expecting the worst and just wishing they would knock me out for two weeks or so..

I dunno is there anything I can do to prepare myself for when I wake up? Any tips or anything? I seriously am just scouring the web for any I mean ANY info I can find about this surgery.

Also I read a bit about the guy who is getting stem cell transplants... And it's making me get a little iffy, like should I just wait this out and feel crap longer? They might find a cure? Or even try and get this treatment? I don't know! I am confused, as this is a once off op that I can't go back from.

I'm sure a lot of you have felt like this. Do any of you regret your op? Or think you would if they found a cure?

Anyway hope to hear from you guys

Xx lotte

 

[ameslouise]

Hi Charlotte - it is normal to be nervous. And you are so young - you can't help but wonder if there will be a cure or better treatment options in ten years or so! Even Remicade and Humira are so new, that some of the people on this forum didn't have those options when they were first DX - it was pred or nothing!

As for the pain, everyone's different and you have to make sure you communicate your pain level to the nurses so they can stay on top of it. I have a low pain tolerance and I made it thru - so will you!!! Did it suck - hell yes! But there are so many pain meds out there they will find something that works best for you.

Do I regret my surgery? Not for one second. I can't tell you how GREAT life is now. I go all day without even thinking about my Crohn's. Sometimes I forget I even have a bag!

My biggest piece of advice is to get off the computer and stop looking for more info about the surgery. Pop on here time and again for support and reassurance, but don't make yourself nuts reading about the surgery and what to expect. It's likely your experience will be completely different than anything you read, just as our diseases are different.

Good luck and hang in there. IMHO, the waiting is THE hardest part of the surgery.

- Amy

 

[Nyx]

My pain tolerance is pretty low too and I made it through just fine...I was actually off any pain meds after just 5 days and I had open surgery. Like Amy said, communicate any pain you have to your nurses and they'll get right on managing it for you. For the most part, with the drugs and the anesthesia, you'll be pretty out of it for the first few days anyway, and that's when the pain's the worst.

I don't regret my surgery for one minute. The life I have now is so much better than what I went through prior to it. It's easy to forget that I have a chronic disease now.

Good luck with your surgery...I know it's going to sound trite, but stop worrying about it, try to get off the computer and do other things to occupy your time prior to the surgery. We're here for you if you have any other concerns or questions, but try not to obsess about it! I know, easier said than done....

 

[CDDad]

Recovery is tough. I just don't think there is a way to sugarcoat it. I don't want to scare you, but just tell yourself that you'll get through it. What helped me was envisioning what I would be like in a year. And guess what, it's been just over a year and my Proctocolectomy dreams have come true. I'm Crohn's free, feeling great, and dealing with my ostomy is second nature now.

You'll get there too. Just make sure you have some good support in place to help you post surgery.

The stem cell thing is a tough one. I'm not sure what to make of it. The treatment is pretty tough - they basically kill your immune system and grow you a new one. At least I think that's it in a nut shell. If you're very sick, it might be tough to wait and go through the procedures to find and then get admitted to a program. But, it might be worth looking into - a Proctocolectomy is so permanent.

 

[Kris]

My advice for you when you come out of surgery is if your pain meds don't work, tell your nurse and ask for a different one. I went through three meds before I found one that worked and didn't make me sick. Be careful not to get dehydrated, because that was more miserable than anything. Also, walk as much as you can in the hospital. It helps with gas build-up which is where a lot of the pain comes from. Good luck and I hope you are feeling better soon

 

[Terriernut]

I first heard there would be a cure in 10 years in 1997. My first flare. Didnt even know it was Crohns then, wasnt diagnosed until Jan 2011. I dont think there will be a cure anytime soon as the research money is simply not there. And frankly, it's too varied and complicated a disease. If you can wait for a cure thats great. If you are terribly ill, which it sounds like you are, you cant wait.

There is no easy way forward for people like us, sometimes we just have to bite the bullet. I wish you the very best. Recovery isnt easy. I've had alot of complications. But since you are young, your recovery will hopefully be better than mine.

If I could take away your pain and fear, I assure you I would. We are here for you.

Misty

 

[lotte26]

Hey guys,
I really appreciate your advice. Ill make sure i am up and moving and farting as soon as i can haha. I talked to my surgeon this morning and he suggested I get the surgery this Wednesday, it gave me a hell of a shock. But I decided to wait as I need to have my boyfriend with me to help me and he is working up until my surgery. To be honest it would be good to just get it done straight away to stop my brain fizzing... And guts.. but I need my sweetie! Waiting for a cure seems pointless really... I mean even if they did find one would we actually see it on the market? I bet not. I heard about this guy who found a treatment for cancer in Australia, but he was threaterned and shut down. There was this girl who had a brain tumor and she was basically going to die, but her parents decided to try out this guys medicine, a few months later her tumor had shrunk and she was getting better and better. Her doctor was pissed off though that the parents went thru other means than chemotherapy to help thier daughter that he got social services onto the family saying they were neglecting the girls needs... They took her from her parents custody and made her get chemotherapy. She deteriorated and not long after died. I don't know the full ins and outs of the story but this is what I heard... Can't believe it.

Anyway, thanks again guys for the advice. Feeling a bit better. Wish I didn't have to wait !

Ciao!

 

[vickyoddsocks]

Hi Charlotte sorry i havnt replied to your thread sooner.
I understand exactly how you are feeling, the waiting about is a really bad part of the entire thing, because obviously your nervous, but your doing the right thing about being positive and thinking towards the future. I'm nearly 4 weeks post surgery now, ill give you my experience.
My op took lots longer than expected (I had open surgery) i had lots of problems, my bum was a big mess, and some of my intestine had adhered to my abdominal wall etc so i ended up being under for 5 and a half hours! This obviously meant i had a longer anastetic then expected. In recovery i woke up fairly ok, but my epidural had moved down my legs rather than in my abdo so they had to turn it off (it was all abit confusing, i dont really know what happened) so this meant i was in a lot of pain, but i can assure you that was not normal, so as long as your epidural works you should be ok! I remember being fairly alert, i couldnt keep my eyes open but i remember hearing my family chatting next to me.
The next few days i think i pretty much slept mostly, apparently i had conversations with people (which now i cant remember which is quite funny) I was on a lot of morphine as well, i has a button i could press every 5 minutes. When i was asleep my sister would press it for me, aparently i woke up and told her that she was giving me heroin!
But i remeber thinking it was quiite cool that i didnt have to get up for anything (not that i could have) no need to wee because of catheter, and no need to poo!
You will probably find that after a few days you will wake up one day and feel loads better! I did, and i managed to have a shower (with mums help)and brush my hair etc and felt LOADS better!
Going home is great but tough at the same time. The biggest advice i can give you here is to make sure you are taking something to slow the output down, mine was pumping out 2-3litres daily and i wasnt taking any loperamide. After 4 days i was so weak i had to go BACK to hospital, i had severe dehydration, and i can tell you now, that i felt AWFUL!!! No matter how much you drink, if you dont take something to slow down the output you will get dehydrated....noone told me this. But im glad i went back to hospital because i left feeling much more confident with diet, hydration and general stoma duties!
I had really bad cramps when i first introduced food, im not sure if this was gas, general healing, or now maybe gall stones, but for me those cramps were the worst thing. Id get some peppermint tea, i drink about 4 cups a day and i really think it helps!
So now im starting to feel the benefits and its great, i went on my first walk by the canal yesterday then sat in the beer garden and had a drink! Im going to the cinema tomorrow too! I still get tired and cant walk far, but im no longer getting regular pain which is so great......no tummy ache! My bum still get sore if i sit for a while, but my abdo doesnt bother me now, i couldnt really do a sit up or anything, but its not overly painful.
I WAS suprised at how slow the recovery was, even though id read on here it would be a while i thought it would be quicker, so dont get frustrated it takes time. Ive only JUST began to stand up straight but its an effort to maintain it. My back is really quite bad because ive been walking pretty much at a right angle! But everyday im aiming to walk further then before, and enjoying it!
In terms of them finding a cure, that scared me too, i didnt want to EVER have to regret the decision to have surgery, but i really dont think i will. I'm already feeling loads better and id rather have years of a healthy life with a bag, then years of being ill waiting and hoping they might find a cure. Plus for me, i had problems that a cure wouldnt fix, like my fistulas, abcess and strictures. Also i wonder how much ostomy products and care will develop over the years! You never know, in the future we might have invisable bags that we empty through our feet! (Well maybe not, but who knows!)
Anyway, i wish you the best of luck, keep rememering that every minute/hour/day your recovering an healing so its only gonna get better! Also get a waistband, i got mine from charter health i think, i wear it at night and it makes sleeping a lot more comfortable and me more confident, when im more out and about ill wear it in the day under clothes too.
Oh, and LOVE your stoma, give it a personality. I didnt dare look at mine and i got really upset when it bled when i did my first change. But my mum then said ''poor little stoma'' and i now feel its my 'duty' to look after him and take care of him (like a pet!) He's called 'Pat' by the way (bit of a inside joke between me and my friends and boyfriend) and remember he will change your life for the better!
I'll be thinking of you, keep us updated! and GOOD LUCK!!!!
Vicky
x

 

[lotte26]

Vicky, oh my god.
Thanks so much for your experiences and tips! I have been following your progress and it has sounded really tough but glad your coming out the other end finally! It's good hearing from someone who is going thru all the stuff now.
I will look into getting a waist band, I was thinking of just buying some tight singlets to wear under clothes but a waist band might be nice when it's warmer (if my roll doesn't eat it hahahah). How is your bum healing up? What is it like do they cover it with skin or is it just like a belly button? I wish I knew exactly what to expect... I think I am most worried about that to be honest! And I am presuming you had your fistulas removed as well did that go ok? I am so looking forward to not having fistulas as it makes my vagina skin sooooo sore and irritated from the poo .. Sex is usually so damn painful... But that will be off the menu anyway for a few months I would say!?

Also thanks for the loperamide trick, I will defo talk to the dr about that before hand.

cheers, lotte

 

[Welsh-bird]

Hi Lotte,
Sorry I'm coming here late! Just wanting to wish you all the best for the impending surgery. My 'Ozzie' is almost 2 months old now, took some time at first adapting, but now, he's behaving and it does get easier daily. My surgery was no where near as invasive as yours, and I was rather lucky that my pain was 'minimal', as I had laprascopic rather than open surgery.
Wishing you all the best, will be thinking of you come the 25th.
And x

 

[lotte26]

Thanks Andrea I'm sure I'll get nervous on the day and start babbling on on here haha. I'm a bit gutted I can't get mine laprascopically I am not sure why I can't.. but oh well. I'm so itchy to just get in there and get it over with! 10 days is to long! Haha.
Anyway thanks again x