Desperate..for advice and opinion

[Ckt]

Hi all..I may have placed a post here previously on this issue. But I wanted to get some advice. I am going to an IBD clinic in Chicago at the end of September and I am to a point with my crohns that I want to lobby for an ostomy. I want to hear how you all have felt this has changed your life, good and bad.
My crohns has been refractory to most meds although I am starting on cimzia soon from humira. I know mine isn't the worst case in here by any means. I have never had fistulas. I have had a few internal abscesses that we're surgically removed in the 80s.
My life now revolves around my home base because my diarrhea is so bad..and I have been on lomotil and questran with nothing helping. I have now had times I need to wear a pad because I am incontinent of stool. Never saw that coming!
I'm just not sure surgery would be a completely bad thing at this point. I guess I feel intuitively that surgery with an ostomy along with cimzia might just be the trick for me!
I am so down and discouraged now. Anything I plan gets cancelled. Hate that. My last trip to visit friends in England,Portugal,and france this past spring was spent in hospital in England and Portugal. I thought I would be safe in developed countries..guess not):
Thanks for listening to me! I am desperate..have even thought of ending it all when it gets bad but I don't allow myself to go there.. I also need to add that I have already had 6 bowel resections. My last bowel obstruction with surgery was dec 2011 and the surgeon said at my post op visit 'see you in a year or two'..thanks pal! I'm 51 and I don't wan to do this rodeo every few years..I'm not sure I can!10 abdominal surgeries is quite enough for anyone!ok..willing for one more if it prevents subsequent surgeries and ups my quality of life. I also realize there's no guarantee on anything but I think his double whammy could help..
Oops..also, my current gi doctor has tried all sore of medicines on me. Iv tried all sorts of diets, supplements, physical therapy, alternative medicine to no avail.:stinks:

 

[littlefreebird]

good on you for your attitude! your at a similar point to how i felt, is carrying on the way i was worth all the pain and suffering for the sake of not having small square stuck to my stomach? ...in my case the answer was no and dammit why did i not get it done sooner.

it ended up i developed a fistula and had no choice but to have the operation anyway but i'm grateful i had a month to mentally prepare anyway.

...in terms of how it has changed my life:

good:
- i have no crohns symptoms and for the 1st while it was strange not having any kind of pains that i had become so used to.
- i used to spend half of my life on the toilet now i go about 6 times a day and it takes less than a minute (even when drunk lol).
- you can do what you want, for example i'm going over seas in about 12 hours time with my girlfriends for the weekend (should actually be packing right now). before surgery i could never really plan anything just in case i was sick, i could never give people definate answers to whether i'd be able to go or not.
- i work full time- 40 hours a week, ive had this job for about 6 months now and 1 sick day cause i had the flu. noone at work knows i have a bag and life in general just feels normal.

bad:
- personally i'm having weird skin problems that i'm currently trying to sort- ironically i'm allergic to whatever these bags are made out of.
- self image, i think to my friends etc. i look quite confident and i am i guess but obviously thats when my bag is covered. my thoughts towards my body image are quite negative but thats an issue not everyone has and i think i'll get over it.

i hope you get some relief soon, and good luck with your upcoming appointment- keep us posted!

 

[Ckt]

Littlefreebird,thanks so much for the pros and cons list! That's awesome! And super thanks for the encouragement!! Sometimes I feel like a big whiner! I really don't want that much.just a quality of life that is bettr then staying close to a bathroom! If it happened every once in awhile or I could somehow predict it,I'd work around it!
Yay for you!!traveking with friends soon! that's fantastic! Happy travels and enjoy yourself to the fullest!!

 

[Ckt]

Can anyone else contribute?its really helpful right now..thanks so much!

 

[KazT17]

Hi Ckt,

I was in a similar position to you but was in hospital when an ileostomy was first suggested. Good idea to do a list littlefreebird:

Good:
No crohns at the mo
No urgency
Feel well
No problems at all with my stoma
No meds at all required now

Bad:
can become dehydrated easily
Food restrictions
Cosmetic - don't flash my belly lol
The op was very painful

In all I am delighted to be this side of the surgery and free from all my previous symptoms.

Good luck xxx

 

[Ckt]

Thanks kaz!i love the pros and cons lists!i know it seems strange to lobby for such a radical procedure and to have it done electively. But I am going to stay open minded to their suggestions as I trust this doctor. And indeed I will advocate for whatever will have the most chance of increasing my quality of life.. Thanks so muc for the contribution!Helps more than I can say!

 

[robbo87]

CKT I think if you did it you wouldn't regret it. I had no choice but to have a bag and it's a bit of a long story as up until that point everything had been controlled well by meds and surgery hadn't even been mentioned. I'm actually shocked that you've had so many resections without a surgeon deciding that enough is enough and to give you an ostomy.

I actually don't think I've come across many people at all on here who regret having an ostomy. The majority have suffered with crohns/colitis for so long and then ended up with their life back and wish they'd done it sooner.

It's taken a lot of getting used to but I just get on with my life as normal now. I've had my bag for about a year and I'm now at a point where I can go on weekends away and just do things like I did before, I play football (soccer.. ;-) ) and in a few weeks time Im going abroad for the first time in a while.

There are problems of course with ostomys, you can have leaks, you have to empty it every few hours, there can on rare occasions be problems with your stoma or you skin can become sore etc but those are more often than not manageable and once you learn how to care for your stoma most of those things can be eradicated. there are food restrictions to an extent, but hey, it's no different to not being able to eat certain things due to crohns anyway? I eat a lot of varied stuff, just avoid nuts and corn and high fibre veggies for instance. everything else doesn't cause me problems. Everyone is different though.

From your post I really think it would help you out. you'd be able to get on with your life and not have to worry so much about needing to run to a toilet for instance. It takes time to adjust like anything, but once you are there it will be worth while.

 

[lotte26]

Hey there
God you sound like you have been through the mill and i don't blame you for wanting to have this done. there comes a point where enough is enough. I'm going to give you my pros and cons but remember this is only my point of view your situation could be so different!

Pros:

No urgency

No more painful bum

Use way less Wet Wipes (What a money saver!)

Having more control over your body.

Being able to do alot more than when i was sick (not at the moment though as i have been having skin problems and if i walk for more than 5 or 10 mins the skin around my stoma will be agonising!)

Cons:
Skin Problems (I also seem to be allergic to most bags.. don't have much of a selection here in NZ either!)

Nervous when i go out, and around people (In case i fart! or if my bag leaks or leaks smell)

Smell. My poop seems to smell 10000 times worse since my op! and it seems to permeate the bag and i feel surrounded by poo smell. Some people say thats all in ostomates heads.. ITS NOT! my boyfriend who has only 1/2 sense of smell in one nostril can smell me when hes near me and its bad!


I know i may sound a bit negative but thats only because i have been having a rough time with my bags. Even still i don't regret getting the operation. ok maybe like 10% of me does but when i think about what i was like before it goes back to 0%.

anyway good luck!!! I hope you get the help you need

x

 

[2thFairy]

I've got a temp ileostomy and have decided to keep it long term. My life is a gazillion times better with a stoma than before. Everyone has already covered the pros and cons. It's a very personal decision, obviously, but it means the beginning of good things, not the end of a so-called normal life. I think most osteomates around here will agree, what was so normal about life before the stoma?? For me, it actually helped to talk about it (and I did a lot!!) before surgery rather than try to run from it. I read books, surfed the Internet for information, and asked a ton of questions. When the day came, I felt pretty set (still nervous, mind you..).

Keep asking questions and don't give up! We are all here for you!!!

 

[Samboi]

Pro -
I have never used so little toilet paper in my entire life

Con -
- My sense of smell is intense - I'm smelling things I don't want to smell - it's intense - eek!
- Sweet things just don't taste so sweet anymore

 

[2thFairy]

Pro -
I have never used so little toilet paper in my entire life

Aint that the truth!! Hahaha!

 

[Ckt]

You all are wonderful!!i am feeling hopeful and want to present my argument for an ostomy. I wouldnt choose it if my life could be managed reasonably. I feel at least the crohns specialist I am going to see in three weeks wl at least hear me out: he may say no but I think he will at least give it some thought. I know I am so grateful for this forum! It's made such a huge difference in how I am dealing with crohns and I feel I can offer my support right back!

 

[Misty-Eyed]

Pros..
No pain
I go to the toilet when I feel like it. No feelings of needing to go.
Feel like normal person!!
Flying is now painless
No holding in farts ever again!
Free prescriptions forever! (uk only)
No bloated stomachs
I now have a waist!!! Guess colon took up a lot of room!
You can control when to let smells lose!
Clean bum.
Sick bugs are easier to manage!
Eating whatever I like

Cons..
Have to distinctly remember to exercise your pelvic floors as I don't spend half my day trying to hold anything in anymore!
You get sympathy from people when your life is actually amazing.
Hmm my bum is still yet to heal and still can't get 'naughty'. Hopefully this wont last forever!!
Erm funny noises from stoma although doesn't bother me.
Potential leaks although not as embarrassing as pooing ones self, in my opinion!
Having to drink lots!
Friends have weird thoughts on the situation. Ie one friend thought I never ever had to go the toilet at all? Not sure how he thought I urinate or empty the bag! Guess this can be rectified with education on my part.

Can't think of anything else!!

 

[Terriernut]

Pros: my god....I'm not actually counting all the places that the walls need sanded down in my toilet!

I'm no longer needing distractions in the loo and considering a fish tank there.

No don't need cable or sky in here anymore either! I no longer need Costco size loo roll packs. I no longer get excited about underwear at 12pk for a 5er.

I'm pretty sure I don't look for toilets much anymore!!! That was a shock to realise!

Cons: I'm still very self conscious. I think I got that way when I first got sick and I feel even more so now.

I'm afraid to eat in public. I've had too many blow outs because of my parastomal hernia and now I just work and go home, no chances taken anymore. I just watch everyone else eat and go home and eat later.

The surgery is tough to recover from, be well when you do it, don't have it emergency!