Life After Emergency Colectomy: Seeking Support and Recovery Tips

Hi folks, well I've had a colostomy for over three years, but struggled with controlling the crohn's, had lots of bleeding, watery output for months, despite strong meds including 'Humira'. I went for a regular appointment to see my IBD nurse just over three weeks ago, knowing I was flaring, with a temperature of nearly 39, and in denial as I'm also in the middle of a marriage break up... I was kept in, and ended up with an emergency colectomy, so I now have an ileostomy, but the good news is I'm finally in remission! I'm out of hospital, but still have severe pains, some soft chicken became blocked last night, I was in severe pain until it finally released itself, together with loads of watery output. I find I feel 'cleaner' with an ileostomy, probably because it looks less like 'you know what'...but I'm scared too. I feel a sense of loss of my entire colon that I find hard to cope with. How long will it take to be able to walk a few steps without nearly flaking out and feeling like my insides are pushing out? I have lost all stamina and just want my life back, somehow. I know it's early days, but I hurt so much, I lost a stone in weight and I just feel really terrible. Is there light at the end of this tunnel folks? I'm sure there is, but I'm having trouble imagining it, thanks

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I have found that ginger in my diet helps a lot

you can all so make tea by cooking fresh ginger in water and make hot or cold tea

cold tea you can add lemon lime soda ..

Hang in there.  I did better on Remicade than Humira, but use what works best for you.  It does eventually get better, as you find what you can & can't eat.  I couldn't eat chicken, apples or carrots for 4 years after my surgeries, even in remission.  thankfully, I can now.  I still have to stay away from black pepper, cinnamon and oils, but it's all good.  Keep coming back, asking questions.  You'll get tons of different answers, which is a good thing.  The only given about Crohn's is that each person has their unique issues, what works for one won't work for another.



Don't forget, you need 2x the normal daily salt allowance with an ileo.  Sports drink & canned vegetables are a great source!  You will probably need B12 shots, too. (not bad, feel like plucking a hair)  To rebuild your strength & blood, eat small amounts of protein 6-8 times/day.  If you eat it all at once your body will store most as fat.  The key is feeding it only what it can manage at once.  Hard boiled eggs, creamy peanut butter, yogurt....I swear I was so tired of them I didn't eat any for a couple years after healing, lol.



((hugs))

Rhian - welcome.  I had an emergency total colectomy with ileostomy myself back in 2008 (emergency because of a perforated colon), followed by three other surgeries over the course of two years, but it definitely does get better.  Probably took me a couple months before things really healed up to a point where I could start moving around more normally.  Just keep in mind that this is a major surgery, and it's not unreasonable to take a little while to recover from it.  That's great that the colectomy seems to have put the Crohn's in remission.  As far a blockages go, I never had a complete blockage (knock on wood), but did have a couple partial blockages and I know they are not much fun.  That was shortly after my surgeries, and since then I really haven't had any blockages, partial or otherwise.  Whether that is due to time or just chewing up my food better since then and avoiding certain things like mushrooms and oranges with a lot of rind, not sure (probably both), but most aspects of this surgery seem to get better with time.  Good luck.



Thanks banshie for the nutrition info, I'd heard bits and pieces about the B vitamins and other nutrients being something to keep an eye on for those with an ileostomy before, but haven't really followed up on that like I should.  I think I will see about getting some complete blood work very soon to find out if I should be getting B12 boosts and anything else.



smith

Hi Smith, you're welcome.  Good tips on the healing process.

Vit B12 is absorbed in only one location in the small intestine.  If that area is removed or damaged, decreased to null absorption.



I had my ileum & bits removed due to stricture & multiple perforations 1st surgery, had to start B12 then; 4 more bits & pieces of descending, transverse & ascending @ 2nd surgery, with a colostomy @ the sigmoid d/t more perfs & sepsis.  3rd surg was to finish 2nd. I joke that I have a sigmoid ileostomy since my effluent is ileo-like.  It was funny to see the GI's face when I told him that.  



For IBD, food is a biggy.  Perservatives & processed foods being the main culprits. (hint: IBD is rare in "3rd world" countries, on the rise in "developed" countries.)  Like, Lawrys Seasoning Salt kills my gut....but all the same herbs in whole form just ground fresh I can have.  Yes, I still eat wasabi -- fresh.  I can eat spicy hummus & salsa, too. (Hummus is great source of protein, fyi)  Now it's like being on a sugar-free diet for 5 years.  I can tell by the smell if salsa has preservatives in it.



Okay, I'm raambling.  later, Marcella

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