What were your symptoms before your stoma surgery?

KWalker · Mar 2, 2012

what were your symptoms before your stoma surgery?

I currently don't have a stoma so I hope you guys don't mind me posting in here but I'm about to have a colonoscopy in a few weeks and I'm super anxious that there is always a possibility I could get results that I need an ostomy.

I was reading online (and I don't know if its true) but it said approx 50% of people with crohns will need a major surgery at some point. I've had crohns for almost 20 years now, and aside from surgery to remove an abscess I haven't had anything else. I've been on a bunch of medications in the past, but I haven't been on any for the last year because my symptoms have subsided and I didn't require anything. My only symptom right now is diarrhea for the most. I do get occasional stomach aches, but its very minimal and doesn't last more than a minute or two.

Does anyone ever go into ostomy surgery without many symptoms or is it usually an emergency type of deal? My little brother has a stoma and he's had so many problems because of it and I don't know if I could ever handle it. I'm so jealous of all of you for being as strong and couragous as you all are because at this point I really don't know how I would react to it.

I might be over reacting, but I have a scope on the 29th of March which would be the first in over 5 years for me so its been awhile. All I can think about lately is the doctor telling me my insides are destroyed and that I'll need the surgery. Can anybody give me some advice please? I tried looking online and I couldn't find much.

Oh, and when I had an MRI, or maybe a CT Scan (I never know the difference) I was told the disease was in the large bowel but I wasn't told how bad it is because they said that wasn't the reason for the test.
Thanks a lot.

Misty-Eyed · Mar 3, 2012

Yeah, I felt the best I ever have before my surgery. My main problem was my strictures that made things difficult. I ran the risk of getting an obstruction and having the operation as an emergency which I didn't want. So I decided to get it under my own terms.

I don't really see myself as being courageous. I see myself as being someone who no longer lives with active crohn's, never gets stomach ache anymore and lives as a normal person. I wish I'd had it done years ago. It would of saved so many years of pain and setbacks.

robbo87 · Mar 3, 2012

Before my surgery I'd say i was pretty asymptomatic, I'd started infliximab after a colonoscopy showed inflammation in my colon and i was actually feeling very good and things improved massively, My op was done as an emergency but it wasn't strictly down to something crohn's related and it all kinda went downhill from there really!...

For a lot of people who are struggling with symptoms surgery seems to turn lives around and make people feel so much better and get their lives back after just struggling/ putting up with ibd for so long, but for me it was a bit different because up until the surgery I'd been doing pretty well. so i wasn't ever really in a position where some form of ostomy or surgery was needed up until that point.

I wouldn't worry to much about the scan results, I know scans like that can pick up on areas affected but im not to sure if they can tell how badly.. which is what the scope is much better at doing. good luck with your scope though!, and i hope you get some good results!

the likely hood is that if your scope does show some active disease that it may just be a case of putting you back on some maintenance drugs to see if that clears things up for you, especially if you've been living medication free for a year. surgery tends to be considered once all else fails.

giftedbyadoption · Mar 3, 2012

Misty-Eyed said:
Yeah, I felt the best I ever have before my surgery. My main problem was my strictures that made things difficult. I ran the risk of getting an obstruction and having the operation as an emergency which I didn't want. So I decided to get it under my own terms.

I don't really see myself as being courageous. I see myself as being someone who no longer lives with active crohn's, never gets stomach ache anymore and lives as a normal person. I wish I'd had it done years ago. It would of saved so many years of pain and setbacks.

I suffered 42 years and it took 8 months to finally get the surgery. I wish I could say its easy and all was ALL better now but its not

but I can eat thats a plus and I am 98 lbs instead of 89lb and my eyes are not sunk in my head

but I was 126 lb but they think 15lbs of that was a sick colon

I wish I could be like Michelle and say I never get a stomach ache anymore but I DO sighhh.... not as much as before but still about every other day

I didnt have crohns though I had IBS and colonic inertia disease so I had the opposite I never went to the bathroom.
Its scary but you do get use to it in a way and you are alive and thats what matter

Terriernut · Mar 3, 2012

I had Crohns without knowing for a long while. I thought it was normal to go to the loo so many times a day! Anyway, after not being treated with anything but Asacol for years, I had a perforated sigmoid colon and almost died because I'm an idiot. And a fistula through my left fallopian tube. Emergency surgery for me.

If you ever need surgery, do what Michelle (Misty Eyed) did, and you choose the time and place.

KWalker · Mar 3, 2012

But wouldn't I know if I have something going on inside? I'm getting myself so worked up over this, and I feel stupid because there's so many people that have to go through this and yet I'm making a big deal out of it. I've seen my little brother go through so many problems with his. It seems like he can't eat anything, and his used to leak A LOT. I'm not sure if that part got figured out or not because I moved away from home, but when I was there it was like he was some expensive piece of glass and everyone was afraid that something bad could happen to him.

Wouldn't I be in some sort of pain if I had something bad going on inside my bowels? I know my brother was in so much pain before hand he had no choice but to get rushed to the ER.

Sorry for all the questions. I want to learn about this and make myself aware in case the time does come. I was awake for most of the night last night because I worked myself up thinking about waking up from the colonoscopy and hearing that news from the doctor.. They can't do anything while I'm knocked out from the scope right? I won't wake up with anything without giving them permission will I?

giftedbyadoption · Mar 3, 2012

Terriernut said:
I had Crohns without knowing for a long while. I thought it was normal to go to the loo so many times a day! Anyway, after not being treated with anything but Asacol for years, I had a perforated sigmoid colon and almost died because I'm an idiot. And a fistula through my left fallopian tube. Emergency surgery for me.

If you ever need surgery, do what Michelle (Misty Eyed) did, and you choose the time and place.

Misty is right....
I chose to have my WHOLE colon removed I suffered my WHOLE life and my colon and liver have moved my stomach to the side so I STILL will suffer do to idiot drs ugh...but my colon was almost 10 feet and 15 lbs and I am a tiny little thing and wear a size 14/16 clothes and was stuffed with this sick intestines that would not work that was diseased and it will make your WHOLE body sick and go through you.
So I agree with Misty...
I hope you get good answers when you go keep us posted

Samboi · Mar 3, 2012

I was given my stoma for pain relief as much as anything else.
It was very sudden, but I had thought about it.
I had not however contemplated the recovery time, risks and complications.
In the end they offered it to me and a jumped at the chance.
It has been extremely challenging.

Misty-Eyed · Mar 3, 2012

So do you actually have any real reason to think that your crohn's is very active at the moment? It's normal to have a colonoscopy every few years if you have crohn's to make sure everything is ok. One of the reasons I had my op was that I was unable to have colonoscopies due to my strictures.

If you feel good, you are more than likely to look good on the inside. If not, I doubt surgery would be on the cards till they live exhausted most other options. It's not something that they mention lightly. Even after surgery was first mentioned to me, it was retracted after I told them how well I was feeling. They even said if you are doing well, it's not good to meddle. Please stop worrying! Until you have cause to worry, it's unnecessary stress which may even end up making your crohn's worse! That would be kind of ironic. They can not do anything without your permission, don't worry. They certainly wont open you up while you are having a colonoscopy! Please do tell your GI that you are worried when you see them next. They know your situation better than any of us and will be able to put you at ease.

KWalker · Mar 3, 2012

No, really...I don't. I think I'm just worrying because it's been so long since I've had a colonoscopy and I'm assuming the worst. Sounds stupid, I know... My crohn's isn't very active at the moment from what I understand, I'm on no medicine, and have little to no symptoms. I guess I never thought of the fact that they would probably try medicine again first before jumping to surgery.

Thanks for the reassurance guys

I'm trying not to worry.

Misty-Eyed · Mar 4, 2012

It's not stupid that you are worried. I don't think many of us arent nervous before a colonoscopy. Hopefully everything shall be good! Please let us know how it goes

Fizzifish · Mar 4, 2012

I had had Crohn's for 22 years and had one major flare up about 16 years ago. Since then I have had tummy ache sometimes and almost constant diarrhea but it was manageable. About 6 months ago I started getting really bad urges to go and then when I went only a bit would come out but then I would desperately need the loo like 20 minutes later! I stupidly thought this must be IBS or nerves or something else. I didn't think it could be the Crohn's because there was no pain!

Then one day in August last year my bowels just suddenly stopped. From going upwards of 12 times a day I couldn't go at all. I also started to get the most horrendous bloating. It then progressed rather sharply downhill, since I couldn't go to the loo or pass gass there was only one way out! Yes, I had the most unpleasant experience of fecal vomiting on and off for weeks. By this time I had checked into A&E, where they had admitted and discharged me 3 times after stays of between 4 and 7 days! I had NG tubes inserted three times when i was awake, which wasn't pleasant either. I had all manner of tests, X-rays, CT Scans, MRI Scans, flexi sigmoidoscopies, colonoscopies, blood tests. By the 4th admission to hospital my new surgeon said if he didn't operate immediately my colon which was massively dilated by this point could burst and I could die. I had emergency surgery and woke up with a colostomy. They still didn't know the exact cause of my problems.

After a total of 8 weeks in hospital I had a follow up MRI scan which showed a very tight stricture right at the distal end of my colon, just above my rectum. I had had semi-acute obstruction.

My advice is if you start to get ANY symptoms that are different or unusual for you don't leave it until it is too late, go and see your specialist and get seem to while it is not urgent.

Emma

KWalker · Mar 4, 2012

I don't even know what to say about that.. I'm so sorry you had to experience that. I am, for the most part very observant with my crohns and start to wonder, or even get things checked out when I notice a difference. Did you have regular colonoscopies?

Fizzifish · Mar 4, 2012

No I didn't have regular colonoscopies. Because I had had two partial blockages before when I was in my early late teens and early 20's I thought that if it happened again I would recognise the symptoms early on. The pain I experienced with my first strictures was unbearable. There was the constant dull pain in my lower right abdomen which never went away and there was also the horrendous gripey pain which I experienced when eating which would leave me writhing around on the floor.

The second time I had severe strictures last year there was no pain, nothing, just a really bad urge for the loo. By the time my bowel had stopped working and the bloating had started I had left it way too late!

Fizzifish · Mar 4, 2012

By the way, if you have no symptoms I think it is highly unlikely that a colonoscopy would show anything severe enough for you to need a colostomy bag!

littlefreebird · Mar 4, 2012

you said it yourself, your crohn's isn't very active at the moment, you're on no medicine, and have little to no symptoms. so the chances of you needing a stoma in my opinion is pretty much zero so try not to worry, i understand that that the thought may always be in the back of your mind, as it was with us but worrying will make you sick.

i only ever had colonoscopys when something had changed/got worse.
i have had flare ups on and off since 2000, my worst one being last march 2011 where i was going to the toilet 20+ times a day, in terrible pain and started getting a lot of perianal swelling to the extent i could not walk or sit down.
i had an mri scan whilst i was in hospital, it showed a recto-vaginal fistula and that the crohn's i had always had in the rectum and spread throughout the entire large intestine. 3 months later i had emergency surgery to remove my colon, rectum and anus. the surgeon told me the rectum was coming apart as he was removing it. i'm actually very lucky.
i'm now on no meds, have had my bag for 8 months and i am living for the first time in years. i have NEVER had a leak or any problems with my bag, not everyone does or even the majority!

i wish you all the luck for your scope, though don't think you need it! try not worry!
hannah.x

KWalker · Mar 4, 2012

Thanks guys. I'm doing the colonoscopy because I'm seeing a new doctor (because I moved), I'm curious to see what's going on because its been so long, and I also need it in order to renew my disability tax credit for income tax. To be honest the main thing that got me worrying about was the person that posted not long ago saying they just had a colonoscopy and as a result, was told they needed an ostomy surgery.

As dumb as it may sound, I was under the understanding that although you may not show symptoms, you could still be pretty rough inside.

I really do appreciate the help guys, and I know I probably sound silly, I just let my nerves get the best of me sometimes.

giftedbyadoption · Mar 4, 2012

Fizzifish said:
I had had Crohn's for 22 years and had one major flare up about 16 years ago. Since then I have had tummy ache sometimes and almost constant diarrhea but it was manageable. About 6 months ago I started getting really bad urges to go and then when I went only a bit would come out but then I would desperately need the loo like 20 minutes later! I stupidly thought this must be IBS or nerves or something else. I didn't think it could be the Crohn's because there was no pain!

Then one day in August last year my bowels just suddenly stopped. From going upwards of 12 times a day I couldn't go at all. I also started to get the most horrendous bloating. It then progressed rather sharply downhill, since I couldn't go to the loo or pass gass there was only one way out! Yes, I had the most unpleasant experience of fecal vomiting on and off for weeks. By this time I had checked into A&E, where they had admitted and discharged me 3 times after stays of between 4 and 7 days! I had NG tubes inserted three times when i was awake, which wasn't pleasant either. I had all manner of tests, X-rays, CT Scans, MRI Scans, flexi sigmoidoscopies, colonoscopies, blood tests. By the 4th admission to hospital my new surgeon said if he didn't operate immediately my colon which was massively dilated by this point could burst and I could die. I had emergency surgery and woke up with a colostomy. They still didn't know the exact cause of my problems.

After a total of 8 weeks in hospital I had a follow up MRI scan which showed a very tight stricture right at the distal end of my colon, just above my rectum. I had had semi-acute obstruction.

My advice is if you start to get ANY symptoms that are different or unusual for you don't leave it until it is too late, go and see your specialist and get seem to while it is not urgent.

Emma

Emma,
My aunt threw up her bowels for 6 months before they operated and they still didnt give her a bag... I think she would be alive today if they did. Thats miserable and its what happens when it cant go out the right way... Thats why I stopped eating all together and lost 30lbs and got real sick b4 my surgery

Sorry you went through that I know how horrible it is. How areyou now ((hugs))

What were your symptoms before your stoma surgery?

KWalker

Moderator

Misty-Eyed

robbo87

giftedbyadoption

Terriernut

Moderator

KWalker

Moderator

giftedbyadoption

Samboi

Misty-Eyed

KWalker

Moderator

Misty-Eyed

Fizzifish

KWalker

Moderator

Fizzifish

Fizzifish

littlefreebird

KWalker

Moderator

giftedbyadoption