Iliostomy

Hello guys

I'm gonna make this short and sweet. I've had crohns/coloitis for about 7 years now main symptoms are rectal bleeding, some D at times but my stools have been loose for a long time, sometimes ill have what looks like normal stool (whats meant to be normal anyway???) Following day loose stools again.
My last colonoscopy showed inflammation in the rectum where it's constantly been and alittle bit in the colon.
I've been lucky in the sense that I can live my life normal and not have to worry about a bathroom everywhere I go like i read on here alot most I've ever had to go to the bathroom was 3-4 times a day max and thats only been a few times.
Current meds im on is mesalazine enemas and pentasa (and yes I know I've heard it enough on here pentasa is no better than placebo!) Thou you'd be surprised the colonoscopy before this showed no sign of the disease at all!! thanks to pentasa and pentasa suppositories alone.
GI has suggested Imuran and 6MP but the enemas are working great i really don't like the side effects of these immunosuppressent drugs before you go into remicade or humira in Australia it's not that easy to get approved for these drugs, you're disease needs to be severe and again I don't like the side effects cancer etc etc.
That leads me to my question if my rectum and colon keeps getting inflamed and showing inflammation that obviously increases my chances of colon/colorectal cancer that fear drives my anixtey right up and got me thinking long term maybe in the long run getting my colon and rectum removed is the best option my GI laughs when I tell him that but he doesn't take my worries serious and says do you really wanna live with a bag for the rest of your life? I'm like do you wanna keep seen blood come out your ass? (Even thou it's not much and only happens few times a year) Do you wanna get cancer? So yeah a bag doesn't sound that bad when I think about it.
I know if I do decide to have surgery the disease can come back in the small bowel or it may not come back at all.
Thats my main fear when it comes to crohns anyone else this anxious or worry like me?
Anyone ever think about an iliostomy bag at times cause of it? Has anyone here actually got an iliostomy bag?

So much for short and sweet lol
Thanks for listening guys.

PS my crohns has never stopped me from doing anything I enjoyed. No pain besides some cramping if im constipated and even that is rare i have to say.
My crohns has always been labelled "mild crohns" but my worries are severe severe severe

Post Edited (Myassisonfire) : 8/7/2016 10:48:04 PM (GMT-6)

There is no way I'd consider an operation if I could swap places and be in your shoes. For a start the cancer risk has been much blown out of proportion: yes, there is an increased colon cancer risk but it mainly applies to those with pancolitis - people with proctitis aren't at increased risk. You would also need to have decades of inflammation for the risk to become highly significant.

Secondly, people don't seem to realise that abdominal surgery is tough on the body. If you have an ileostomy, you put yourself at increased risk of adhesions, hernias, partial obstructions, dehydration, skin problems, and metabolic issues. Most people experience leaks, and those aren't nice to deal with. There can also be problems with hiding a full bag under clothing, depending on what you like to wear. Don't get me wrong: the vast majority of people do get used to having an ileostomy. And most problems can be solved. In nearly all cases, an ileostomy is better than whatever the person had before.

But in your case, not only would an ileostomy not be any better than what you have right now, it's hard to see how it wouldn't be worse.

I'm severely braindead from lack of sleep and not very happy with this reply, but not sure how to rewrite it. I'm a worrier myself and it is horrible. It's just that after 16 years of having Crohn's disease, I guess I have learnt that nothing is perfect. There isn't any course you can take which alleviates all anxiety: there'll always be something else to worry about. In my case I had an ileostomy for 2 years; I can safely say that living with one wasn't bad, but I went and had a reversal anyway. That didn't work out well and now I am worried about all of my future options for reasons I won't bore you with.

I'm not particularly worried about cancer, but I'm worried about virtually everything else. I think anxiety stems from a fear that we can't control our own lives - we are subject to forces beyond our control, whether it's losing our jobs or getting a horrible disease. And our worrying is a way of trying to regain some control. Trouble is, it doesn't actually work. We either become paralysed with fear or take rash decisions that would have been better being deferred or made in a calmer state of mind.

I didn't think much of mindfulness before, but I am actually trying to practice it a little bit now 'cos it struck me recently that I was walking around in an almost constant daze, brooding about the past or worrying about the future. In the meantime whole days were passing me by. I've only just started and today I'm too braindead to live in the past, present or future, but I think it has helped so far.

As for the meds, if your GI recommends Imuran or 6MP, I would try it. The lymphoma risk is extremely low: 4 in 10,000 chance for those on 6MP/Imuran as opposed to 2 in 10,000 for those who aren't, if I recall correctly. Over six years I've seen people get an array of side-effects on both the Crohn's and UC boards, but I haven't seen one poster with lymphoma post. Your risk of skin cancer is probably a lot higher, since these drugs can increase photosensitivity and you do live in Australia: it goes without saying that you ought to use sunscreen in the sun.

Tired now, so gonna stop posting. Besides which, this post is long enough :-/

I'm 38. I had a temporary ostomy last year for 3 months, I have only had my permanent ostomy about 5 months.

Yes I had my colon, rectum, and anus removed. Some just have the colon removed in case they can be reconnected. My rectum was very diseased and I knew I didn't want to ever try to reconnect so they took everything out.

So far life post surgery is really good. I currently take no medication ( have an ileoscope next week so that may change), I have normal energy again, back to work and going to the gym. Except for the having the bag I feel like before I was ever sick.

I'm 41, if anyone is interested <_<.

If it's of any help at all, I used to be scared of the Crohn's meds and probably still am to some degree (particularly skin cancer and 6MP). But these days I am far more scared of Crohn's disease and surgery than I am of the meds. If I could go back in time and if it had been an option, I would have got on the strongest cocktail of meds available to me, 'cos I now know that severe Crohn's is worse than any of the meds - with the possible exception of pred.

That said, if your Crohn's colitis has been the same for 7 years now, myassisonfire (true), there's a chance it will never get any worse than it is. Crohn's tends to get worse in most people if left untreated, but not always: there's a minority who have a chronically mild course. My brother has Crohn's/proctitis and appears to be in that category. He's had his disease for a bit longer than I've had mine and in all that time it doesn't appear to have got any worse - he's never been hospitalised, needed surgery, developed fistulas or been on a biologic. But that said, he has been on courses of pred and on azathioprine, so perhaps that stopped things getting worse in his case - I dunno. The last flare up he was in, he reckoned the steroids weren't even working for him and he still came out of it.

So. Yeah.

My doctor currently considers my Crohns "mild" but that is probably changing, like NCOT said. If yours has been consistent for 7 years I'd count my lucky stars and try some meds. I'm terrified of the meds but not so much the cancer risk as the injections and infusions (I have a massive baby and only recently blood draws and IVs have gone smoothly with no Vasovagels) but overall, if you're not willing to try the meds and want to jump to seriously invasive and major abdominal surgery, that seems odd to me.

If the meds don't work, then you're no worse off (and your worse off by your own description isn't bad with no urgency and only 3-4 bowel movements a day) and the ability to live your life normally (as you said above) why would you even want an ileostomy? I mean, if you can live mostly normally and the symptoms aren't debilitating, then why go that route? Just curious because I'm in a similar though less mild than you it sounds, situation, and unless surgery would vastly improve my quality of life, I wouldn't do it. It doesn't sound like it would improve your quality of life over what you have now.