New ileostomy. Worrie about blockages.

Just underwent surgery this week and, man, I wish I did this sooner. I had a total colectomy and am waiting for the next step to create the j-pouch. I am definitely relieved to not have to deal with UC symptoms anymore.

But I would go as far to say that I have a phobia of getting a blockage. I have heard they are very painful and require a trip to the ER which I definitely want to avoid after going through everything with UC.

so to anyone that has had one, what was it like and how do you get over it? also, what can I do to ensure that I do not get one? is it diet, time in the healing process, etc? anything really to help me out and ease my mind of the topic.

I think UC pysches you out so much worrying about things that when it gets to the point where there isn't much more to worry about you can't do it. It has been natural to worry.

I have felt surprisingly good since my surgery. They had me up walking around 8 hours after getting out of recovery...and after 2 days I was able to get up and about some without any assistance at all. It's been a week now and there is still some pain, but I have no problem getting around the house and going on little walks here and there. I do get tired, and have to take it slow, and certainly wouldn't do real exercise type stuff for a while yet. As far as being "out of the game", everyone is different in general, and it depends on what you do for work. If I had to guess, I'd say I'll be out of work a total of 6 weeks...the doc says up to 8, but I was VERY sick and malnourished before surgery. All that said, whatever I have to do and however long it takes to get better, I already know it is MORE than worth it to have my health and quality of life back!!

Try not to worry yourself sick about the blockages. If you follow the simple guidelines (very low fiber, no skins/seeds/husks/shells, lots of liquids, CHEW VERY WELL) that's the best you can do. Some people are more disposed towards getting them than others, and there's nothing you can do about that. I'm nine weeks out from surgery now and have only had one incident that was possibly a blockage (in retrospect I think it wasn't), and it didn't involve any pain, nausea, or ER visit, just rubbing my tummy and drinking hot tea until it passed :)

I will admit I was slower to try fruits and vegetables than permitted. Probably for the first four weeks all of my veggies were either completely pureed or cooked so long that I could chew it into a paste-type consistency. I guess I was extra cautious. YMMV.

RA - My surgeon told me at my two week follow up appointment that from a physical standpoint I was OK to go back to my desk job, but I might want to take some more time off to get my energy back. I was in a really severe flare prior to surgery so it took me six weeks post surgery to feel that I would be able to handle working full time (I was malnourished, never slept enough, pred/antibiotic dependent, etc). If you go into the procedure healthier you may be able to go back more quickly.

It is weird, to say the least. Sometimes I stop and think about it and it feels weird all over again! For the first month or so the stoma seemed like an alien attached to my stomach or something. But having an ostomy doesn't freak me out. I had no life with my colon and now I have a life again. I decided before my first surgery that even if it turned out I would have to have a permanent ostomy I would be OK with that, and I still feel that way. The bag is 1000000000x better than "living" with UC was.

hey what - i don't know if you are brave or strong or crazy (maybe all 3 but your attitude makes you awesome in my eyes !

so why did you choose the bag model ? another way to accessorize your wardrobe ?

and can you sleep bagless ? i always wondered about that one -

well i am just curious by nature, so i appreciate you taking time to answer my questions - i'm gonna give myself another year to get a handle on this thing, but if i can't, i'm probably gonna follow your lead - i want to keep the original equipment as long as possible, but 10 years of a compromised existence is enough - like you, i want some stability -

dealing with my son has given me a better understanding of what "new normal" really means - people have no idea until they are faced with a drastic alteration of life how quickly you adapt - and then you just live -

Wow, Soystud! You have put up a much longer fight than I could imagine having done. I completely understand why you are considering surgery in the near future. Does your son have health problems that you have been having to deal with? Sorry if it's none of my business...

I did forget to answer one of your questions....sleeping with the bag. I wouldn't recommend doing much of anything without the bag....you'd probably have a bit of a mess to deal with if you did! That said, so far my stoma is very inactive at night and I haven't had to get up once to empty my bag...just my bladder...darn IV fluids and pred!

Let me know of ANY questions you have....I'm an open book and have lots of time while sitting here healing :)

@Shaz~ That is great to know about you eating whatever you want and being blockage free. My surgeon told me to just use common sense, do everything in moderation and not to worry...so far so good for me.

What is cp....and its messed up when kids have issues

Your ileostomy will become your best friend. The 1st end-ileostomy is a breeze to take care of and manage. I found it slightly more difficult to seal the loop-ileostomy, but it became very manageable when I changed setups for it.

1st surgery went fine...day 2 I was up and doing the regular "sit in a chair" routine. After 5 days I was heading home.

2nd surgery had some complications. The 4 hour surgery ended up taking 9 hours. My surgeon said my trunk was long due to my height that he really had to work to create the j-pouch. Many surgeons would not have bothered; he said he was not going to let me off the OR table without a perfect j-pouch.

Recovery from that was about 5 days, too. Same techniques as before (they key is to walk, walk, walk). Get your body moving, even if you feel like hell due to the pain medication you'll be taking and the drowsiness with it. Plus, moving that darn cart around, with all its lines connected to you, is tedious and annoying.

My 3rd surgery is on the 11th of April, so right around the corner. I had my pre-op last Thursday and got a barium enema to make sure the pouch was sealed tight, and it was.

I will say this - this is the best decision I ever made with UC. My blood levels have constantly been normal and I really have had zero restrictions on diet. I have never had a blockage despite scarfing down a ton of food when going out with friends. Mind you all of my surgeries have been done at the Cleveland Clinic so any issue I have with anything is promptly taken care of. Aside from some morning nausea on occasion, I have zero issues with my stoma. TBH I will kinda' miss just watching it move around as it passes food (sounds gross, I know).