Just had major surgery

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Hi all. I've been diagnosed withcrohns diseasefor about 6 years now. I've been through all thr normal barrage of tests and unfortunately had to have acolostomydone back in 2010. Twice herniated. I recently had a major op 14th December which was aproctectomy, and a bowel removal. I ended up having to have half of my small bowel removed. I know my severe pain was near the breast bone so gathering it was first to middle removal. Anyone had this? What sort of things will change for me? Bowel habits, weight loss ect. Any help would be appreciated. Thanks
 
Wow Andrew, that and part of your small bowel removed as well? Your small bowel absorbs vitamins, so I would think you would need to have your B12 and iron tested regularly and probably have injections of these key nutrients from now on.

With no large bowel left at all, or part left?

You've been through alot! Are you home yet?
:ghug:
 
Hi. Yes bowel removal and proctectomy. I came down with respiratory failure type 2 in hospital too. I manage to get home on the 23rd of december. I have about four fifths of large left. They never said anything about the vitamin side but I have a follow up appointment in feb so I'll ask then
 
Sounds awful with the respitory issues. Any idea what caused it, infection? How are you getting along now? Open surgery really does cause alot of complications, several of us have had respitory infection after our surgeries.

Are you being visited by nurses currently? I hope so. How about a stoma nurse, have they assigned you one yet?

As for the vitamin levels, it depends on how much small bowel was removed, and where it was removed. Hopefully you will be fine.

You say you've got 4/5ths of your large bowel left? And they removed your rectum? Sorry to ask, but do you have cancer?
 
Hi. Yeah I came down with a severe chest infection and then it got worse. No nurses. I've had my stoma for about two and a half years so already have a stoma nurse. And yes from my stoma down was all removed. Rectum anus anal canal everything. And no I dont have cancer.
 
Hi Andrew
Sorry to hear the awful time you are going through.
I have had a proctocolectomy done in August. This was following numerous previous surgeries over the last 20 years. I now only have half my ascending colon, and I have also lost a substantial amount of small bowel. I am on vit b12 injections and suffer from short bowel syndrome. That is I have continual output. Pre ostomy surgery I was on the toilet up to 30 times a day.
Definitely talk to your surgeon about what supplements you may need. Hope you are on the mend.
Cheers jano
 
Hi Andrew, I'm not sure about the proctectomy side of things since I havent had that done, but with removal of a large part of the small bowel You have to be really careful maintaining your fluids and electrolytes not to mention vitamins and minerals depending on what part of the bowel is removed. Sounds like you still have your terminal ileum which is where most nutrients are absorbed but various ones are absorbed at different parts of the small bowel. Have you found you have a higher output now part of the small bowel is gone? Your doctor should do regular blood tests to check your nutrition levels. Plus you should be drinking lots of fluids - I was told to mix a sports supplement drink like gatorade half water half gatorade with a teaspoon of salt to help with electrolytes. My gastro gave me a recipe for a drink that is most easily absorbed, its one litre of water, 8 teaspoons of sugar, one teaspoon of salt plus the juice of a lemon, lime or orange. Caffeine drinks aren't easily absorbed from the small bowel so I'm told you should limit those - though i'm not very good at following this rule cos I love my cup of tea! Hope this helps with some of your querys, if I think of anything else I'll let you know. All the best with your recovery,
 
Hi Andrew,

I had my entire large bowel removed, as well as between 6-9 feet of small intestine removed due to two failed j pouches and one failed koch pouch. All of the above advice is good, but it's not something I worry about. I'm not sure how much intestine you have left, but it's more concerning if you have small bowel syndrome and I think that can occur when you have left than 50% of your small intestine.

As for diet concerns, you will naturally get more thirsty so be sure you are staying hydrated. I normally don't do a great job at that and when I had my last annual physical a few months ago, my doctor looked at my blood work and the first thing she asked me is how much water I'm drinking. That's easy enough to fix. However, because the colon is all gone you won't absorb salt or potassium as well as before (they are mostly absorbed in the colon), so I add them back in my to diet. Specifically, I'll make my own sports drink (lots of homemade recipes) and I'll add Morton's Lite Salt to my lemonade, ice tea and juice drinks. The Lite Salt has extra potassium. I also will also snack on pickles at home. The only thing that bugs me is I pee more often than I'd like, but that's a small problem to have.

The vitamin levels and such your doctor will watch, so do make sure to have at least an annual physical. My doctor wants to see me every six months now since I've had a flare up and she's not familiar with how I respond to these yet (I have a separate GI doc for my Crohns). But overall, taking a good multivitamin would do you more good than before these surgeries. Anything other than that is up to you- try the suggestions and see how you feel.


Ooops, I just read your post again and realized you still have most of your colon so the dehydration issue may not be so relevant to you. So, you have a colostomy now? Still a good idea to stay well hydrated as that does help bowels, but ignore the salt and potassium recommendations I made above- it wouldn't do you much good.
 
Hi thanks. Yes I have a colostomy. Had it for a few years now. Hydration is always a naughty thing for me too. Should do a better job of it
 
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