Fed Up- looking at getting an ostomy

I'm not sure how the doctor will respond to wanting to do surgery without a diagnosis. Although they do it for chronic constipation so might be a possibility for you as well.

As far as quality of life my ostomy gave me my life back and was totally worth it. Mine was due to Crohn's but I was to the point that accidents were so frequent I wouldn't leave the house except to go to the doctor and because of other complications from the Crohn's couldn't work.

Since my surgery I go anywhere and do anything. We have traveled, go on 2-4 hour hikes, and I'm back to work full time. I adapted to the ostomy well bc it is such an improvement over where I was at it seems like a small inconvenience. I will say being dependent on medical supplies forever is not that great but beats my alternative!

Being housebound with young children must be hard. I hope the doctor helps you find some resolution.

Mumof4,

I would try to find out why you are having these issues. If you have already tried and there just isn't an answer....that must be very difficult. These are difficult decisions and you are smart to seek examples so that you can set your expectations accordingly. Talk it over with your GI, colorectal surgeon, stoma nurse, and if possible physically go to a stoma support meeting.

I have Crohns. It was sudden and aggressive. I was spending most of my life in the bathroom. I tried to avoid having surgery. I had an obstruction so it wasn't optional. The surgery and recovery was painful and challenging. It improved my quality of life. It was easy to accept my new plumbing but challenging because of issues that occurred after surgery and my Crohns. My stoma separated from my skin then it shrunk so it had a quarter inch mott around it. Once that healed it was better. It is more manageable for me now. I still have diarrhea and it fills up the bag so there is some sense of urgency to empty it.. But I don't have accidents as much as I used to. The smell while emptying and changing my bag did bother me. M9 drops help with some of the smell and 4 months post surgery my output smell became less potent.

I don't know what your normal looks like or what it could look like with a "bag". Perhaps they could give you a temp and make it so that you could be reconnected later?

For me....it was so awful before and it is so much better now that I wonder why I fought so long to avoid surgery. You can not tell I have a colostomy. It does not smell unless I am emptying the bag or changing it. The bags do sometimes make a small rustling sound. The stoma does sometimes pass gas and it can sound like an actual fart or like something grumbling. You have to be aware of what you eat and how it impacts you. You can get an obstruction if you eat the wrong thing. Stoma supplies are expensive even with really good insurance.

Please remember that someone else's experience may not be your experience. Make the best decision for you and your family.

I wish you good luck with whatever decision you make. Please let us know how you are doing.

Clo

June ? Wow ! Are you in Canada ? My friend who lives there had to wait 7 months for surgery . I hope you get in sooner.

MumOf4 said...
I'm in Australia not in major city either so there's only 1 or 2 GI's here. Will the GI book the surgery or do I need to see a colorectal surgeon before that's done? Just thinking i could make an app for the surgeon sooner and just get a referral from my normal GP?

For sure go to a big city for surgery get the best doc you can you only have one first shot at this . Get the BEST .
I am in USA so not sure if your GI has to refer you to surgeon over there different rules maybe .

When the last time you had a colonoscopy? Or MRI scan/small bowel follow-through/pill cam? If you have only had one colonoscopy in 14 years with your symptoms, then that's not very impressive to put it mildly.

I wouldn't have surgery without having your bowels thoroughly examined first. Blood and stool tests just aren't sufficient. To me at any rate, it sounds like you might have microscopic colitis. I obviously can't diagnose you but a colonoscopy with biopsies could.

To answer your original question, I regretted my stoma at first. I gradually got more and more used to it, but when the opportunity to have a reversal came up I took it. My quality of life is not as good as it was when I had the stoma, but it's not as bad as yours. If things got much worse for me, however, then I would seriously consider having my rectum taken out, butt crack sewn up, and the stoma restored.

To be honest every test I have had has been at my request, other then the stool samples, never at the Dr's recommendation. And all the diets ect that I have tried has been from things I have read on the net too. Seems like I'm the only one trying to find out what's wrong with me

The purpose was because he thought maybe I had too much bile, with having my gallbladder removed. So he put me on the questran lite as a binding agent to "soak up" the excess bile. I tried for a while and couldn't get it down so gave up, but I went and got more and tried again, after 2weeks with no improvement and maybe even a little worse I felt it wasn't working so gave up again, I am giving it another go now, and again 2weeks into it and no improvement but I will continue until I see the GI just in case it takes a longer time to work or something. But like I said, I've had chronic diarrhoea since 2003 and had the gallbladder removed in 2009 so I dont think that's the problem though it could be contributing to it :/

No I haven't tried Metamucil or psyllium yet as I always thought they were to make you go(my 4yr old nephew has chronic constipation and was recommended to take it) and my sister also takes it to keep her regular from constipation also. Maybe I should give it a go though,I suppose at this point it can't hurt and anything is worth a shot...not really sure my diet is healthy as I don't eat a great deal as I'm never very hungry, I stay away from dairy, as it does seem to agravate it, I eat a lot of fruit, veg and meat(not much processed meat though) I don't eat a great deal of fried/fatty foods either.

Have you been tested for Celiac disease .

6 years ago is a long time. I think it's time to have another look. Fiber is also not a bad idea to try at all. Have you been seeing a specialist in the past? Waiting until June seems very long to me. You could call and try to get on the waiting list. Sometimes people cancel. You definitely need to get more information before considering surgery. Imagine you went through such a huge, irreversible surgery and all you needed was one tablet a day? Life after surgery can be liberation, compared to what many of us deal with on a daily basis, but there are new challenges.

I'm on the waiting list, but the GI is away at the moment and then is booked out till June. Being in a smaller city makes it hard as there are only 1 or 2 GI's here and I cant even go to the local shopping centre that's close to my house let alone travel 2hrs to major city to see someone else...it sucks waiting but that's really my only option at the moment.

My heart goes out to you and I can thoroughly relate to your problem. I'm in agreement with the above posts that 6 yrs was quite some time ago and it's time to be evaluated again through colonoscopy.

I had ulcerative proctitis and suffered with it for twelve years. My GI doctor refused to send me to a colorectal surgeon, so I found one online. I live in the states, New Jersey, so it's quite different here than in Australia. My surgeon gave me an appointment for a consultation within two weeks of my phoning him. My problem was also chronic diarrhea, but I also was bleeding from the rectum quite a bit. Do you have any bleeding? If they think it may be caused from anxiety, which it very well may be, could you take a medication for the anxiety and see if it helps? You stated you stay away from dairy, which is a good thing as you may be lactose intolerant.

Before going to the extreme with the ostomy, I would try to rule out any ailments that may be causing your diarrhea, get treated for them and if you still have the chronic diarrhea seek out a GOOD GI doctor and maybe get more than one opinion.

I had a total colectomy with end ileostomy in 2010 and it did give me my life back. I am now 70 yrs old and living life to the fullest. Best of luck to you. Please keep us updated on your condition. God bless.