Worried about possible ostomy

[Sarah Tee]

Dear folks,

I haven’t mentioned this before, but I have a failed bowel surgery that means I probably have to have an ileostomy. And I am really frightened that I won’t be able to manage it because of my chronic OI and sensitive skin.

There’s so many issues, I can’t even think of them all.

• Looking down and concentrating to empty and change the bag will make me feel ill
• Having to do a complex bag change regimen at short notice is not going to be possible (I feel better at night, but bag changes cannot wait)
• Having a hot bag of (sorry) liquid excrement attached to my abdomen is going to make me even hotter
• Wearing a support belt will make me too hot in summer
• Having a plastic wafer permanently attached to my skin is going to make it irritated and itchy

Then there’s the maintenance burden. For a healthy person, it’s not too bad. But I already struggle with showering and looking after myself. Where will I find the extra energy to look after a stoma? (And it must be well looked after or you can get ulcers and other horrible skin conditions.)

And then there’s my brain fog and toddler-tantrum irritability. There are endless types of stoma products. I mean endless. Literally thousands of combinations of bags, wafers, creams, barriers, pastes, sprays, filters, support belts. And you may have to try many combinations before you land on one that works for you. (Then a company discontinues a product you rely on and you have to start all over again.)

I can see myself screaming and throwing the whole lot out the window.

Yes, there are stoma care nurses, and district nurses to visit you at home to help with bag changes. But they only come by appointment, not at 3am when your bag starts leaking.

I am currently getting a second opinion from a second surgeon, and I may go back to my first surgeon because new research came out on my problem that might change things. But I’m not confident.

Also, on a different note, I suspect the failure of the surgery is related to me having a sub-clinical connective tissue disorder. (By which I mean, I would not be diagnosed with a connective tissue disorder, and if I hadn’t had this rare bowel surgery it would never have been a problem. But the surgery put my bowel under unusual stress, and hence the problem.)

Anyway, HALP!!!

I really need to get my OI under control beforehand if I have to have a stoma. But my bowel is deteriorating and I may have to have the surgery very soon. I still need maybe a year to try out the last few OI treatments, but I may not have that.

[Sarah Tee]

P.S. I forgot to say that I’ve had two ileostomies before during my original sequence of  surgeries, so I know what it’s like. But I did not have constant OI back then, just very occasional episodes that I only recognise via hindsight.

[Pistol]

@Sarah Tee I am so sorry you are going through this, and your worries are understandable! I used to be a nurse before I became disabled, and tended to many ostomies. The reason there are so many ostomy supplies is that each person has different needs regarding their stomas. When your skin is very sensitive there are skin preps that can be applied around the stoma before the wafer gets put on. I had a patient once who was bedridden and changed his stoma while lying down, so that is something they can teach you. That way you can do it at night when needed without having to get up. 

Having this in addition to all the other symptoms you already have to endure is tough, but I have no doubt it can be managed. It is very frightening and I understand your concerns. Please know that I have met many, many people with stomas that thrive and are minimally burdened by the maintenance of it. Be positive if you can!

[Sarah Tee]

@Pistol, thank you for your kind thoughts and good advice. I hope I can muddle through it somehow. To be honest, I wish I had just had an ileostomy from the start. (As you are a nurse, and will know about it all, I’ll mention that I had a j-pouch or IPAA after a colectomy for refractory ulcerative colitis.)

Then it would be second nature to me, rather than something I have to learn. I have terrible trouble learning and concentrating these days, and my patience quotient is non-existent. Plus ileostomies rarely fail, whereas j-pouches can.

It is not set in stone yet. I may be able to get the j-pouch redone. But then how long would it last? I got 15 years out of the last one, and I’m 48, so I have to look at the maths.

There is a very interesting operation done in the US called a continent ostomy. Have you come across one? The surgeon creates a valve and a reservoir, there’s no protruding bowel end, and you empty with a tube. You don’t have to wear an appliance so there’s no skin irritation from adhesives. There can be a little leakage, but it can be managed with a thin pad, like a panty liner, tucked into the underwear.

We briefly had an Australian surgeon trained to perform this op … sadly he passed away.