Need advice - Crohn's/constipation/ileostomy

Hey guys, so I have some questions,
I am 19, have had constipation since I was 2 months old I think, and have been on a lubricant laxative (parachoc) since I can remember because of it. Ironically, I was never told the cause of my constipation…
Then 4 years ago I was diagnosed with left-sided UC for diarrhoea, bleeding etc., completely unrelated to the constipation, though before the UC began the constipation became more severe.
Since then I have been on 5-ASA (orally and foam enema), steroids (orally and enema, became dependent on oral steroids 2nd time round), and azathioprine (still on) for the UC. But then January 2014 I had surgery for a perianal abscess drainage, and a few months later I flared, with constipation as the main symptom. Had another scope, and was diagnosed with most likely Crohn’s (due to fistula from abscess). I’ve now been on Remicade for 10 months, and have been in remission the whole time! I was even able to come off of the laxative meds, but the last month or so I've been getting constipated again, but no Crohn’s symptoms otherwise. The other day for example, I had a tiny bit to eat for breakfast, and then I ate lunch at 2pm, slept for 3 hours after feeling like I was going to be sick, and at midnight I was still feeling full as can be.

I'm confused, do you think the constipation is related to the Crohn’s or something else entirely? What is your opinion of what is going on with me?

And another question, I'm so very tempted to get surgery and get a permanent ileostomy, and I see nothing wrong with an ostomy, but my family think I'm crazy for considering it. Am I being naïve and overlooking some obvious major disadvantages of an ostomy, or is it really not that bad?

Thanks, and I hope you are all doing well :)

Honestly, I have no idea. What you describe about still feeling sick and full many hours later sounds more like gastroparesis (slow stomach emptying) to me. Have you been tested for that?

There are a few people on the Ostomy board on this site who had colonic inertia and elected to have an ileostomy. There's also a few who had UC and elected to keep their ileostomy rather than go on to have a j-pouch. So no, you're not crazy. Have you spoken to a GI or colorectal surgeon about it? If so, what's their opinion?

Me, I have had a permanent ileostomy for two and a bit years. I'll be honest. I didn't want one at all and the only reason I eventually went for it because I had failed all the meds and was steroid-dependent. It was actually only the steroids keeping me from surgery anyway; if they'd failed I would have needed an emergency surgery. Physically everything went okay. There is an initial steep learning curve as you experiment with different bags, seals, etc. and find which ones you like and don't like. It would be surprising if you didn't have a few leaks or accidents to begin with, but as you get more used to it the number of leaks should eventually dwindle down to zero.

Diet-wise, you should be able to eat pretty much everything within reason. Partial obstructions are more likely with a stoma; some people do seem to be much more prone to them than others (probably due to adhesions forming after surgery). Likewise, some people can eat everything, while others have to be more careful. But the chances are, you will be able to eat a normal diet.

You will also be dependent on costly medical supplies for the rest of your life and thus at the mercy of your insurer/the NHS/etc. In the UK all your ostomy supplies are free. That should continue for the foreseeable future, but I'm a pessimist, so I'm worried at some point there will be restrictions, i.e. you can only have 15 bags a month, or whatever. Insurance companies in the US already do this, hence why the 2-piece system is so popular over there; they can use the same bag for several days without changing.

If you haven't already, I'd also advise speaking to a stoma nurse. This is such an individual decision that I'm really not sure what to say. Personally my inclination is to say hold off for a while and see where you are in two years' time. But if you are adamant you want to have an ileostomy now, then it's between you and your surgeon: not even your GI can interfere if the surgeon is up for it.

pb4 – thanks for your response! I'm sorry to hear of your terrible experiences, and I hope you’re doing okay now.
I am currently in the midst of trying to sort out the constipation with my GI, and so hopefully some light will be shed on that. I have also asked him about his opinion on surgery for my circumstances, and am hoping for a response soon.
NCOT – No I haven’t been tested for gastroparesis. When I was a kid I was tested for Hirschprung’s, but that was a negative. Hopefully I will be better informed of my situation within the next few weeks, and so then I will have a better idea about what to do. Though due to my circumstances being not too severe, I am leaning towards holding off, as you said NCOT. And good luck for your reversal!
Thank you both for your responses, they have been very enlightening and given me lots to think about. :)