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anyone NOT go to the ER?

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Posted 1/20/2014 4:12 PM (GMT 0)
hi people! You read a lot about posters going to the ER for a whole variety of reasons- dehydration, blockages, random abdominal pains, etc. Has anyone just gotten their ileo & not had to go to the ER at all? I've yet to go to the ER with my UC, & hope that an ileo would be my cure.... but if it leads me to the ER, I don't know. And are you able to prevent dehydration simply by drinking lots of water, or do you really need to add Gatorade? I thought the sports drinks had lots of sugar, which would make for looser output.
Posted 1/20/2014 4:22 PM (GMT 0)
I've been to the ER countless times with UC but never with my j pouch or when I had the temp ileo. I don't drink anymore water than the average person. Everyone is different though...some people just need a higher fluid intake. Sports drinks are only good for athletes in my opinion. Way too much sugar in them.....I stay away from them.
Posted 1/20/2014 7:04 PM (GMT 0)
I have had my Ileo just over a year now and have never been to the ER with it. I don't like drinking water on its own so, I usually drink sugar free juice with it x
Posted 1/20/2014 8:26 PM (GMT 0)
Never went to the ER in seven months with my ileo (nor ever with my jpouch)
Posted 1/20/2014 8:27 PM (GMT 0)
I had Crohn's for 11 years without once going to the ER for it: never saw the point. When I did eventually go, it turned out I'd made the right call, 'cos I had toxic megacolon. Spent a total of 2 weeks in hospital that time.

Have had my ileo for 11 months now (exactly to the day) and have never been to the ER for it. Don't see going either, unless the Crohn's comes back. I saw out most flare-ups at home; if I was dehydrated, just drank more; if I had an obstruction, just stuck to clear liquids until it passed, etc.

If you are dehydrated due to diarrhoea, fever, and reduced food intake, then it's better to drink stuff like Gatorade or diluted fruit juice than plain water. Or you can make your own oral rehydration solution for pennies; there are recipes online. But if you are not acutely flaring up or if you have an ileostomy, plain water is fine. I drink mostly tea and water, but I do have some non-fizzy soft drinks as well.
Posted 1/20/2014 8:29 PM (GMT 0)
I have had my ileo for a little over 10 months now and have never come anywhere close to even considering going to the ER. And yes, there is a higher chance for dehydration with an ileo, but nothing that can't be handled by drinking some extra water. Sports drinks are crap! If you really want extra electrolytes, coconut water is a great way to go and there are ways to make drinks at home using juice from lemons/oranges you squeeze, honey, salt that still has the good minerals in it and water. I just try and drink plenty of water and have had no issues.
Posted 1/20/2014 9:05 PM (GMT 0)
I feel so much better after reading these... sometime you get the feeling everyone with an ostomy is dashing off to the ER every hour! I don't really like Gatorade/sports drinks, & I drink tons of water daily. When I'm not drinking wine, that is.... rolleyes ! haha! I wasn't sure if one had to add that type of beverage in, or if you'd be ok with plain water. I think I can deal with this now...
Posted 1/20/2014 9:15 PM (GMT 0)
You'll still be fine having some wine but more than 1 glass can be dehydrating so you'll just have to be conscious of that. I love red wine so when I "indulge" I always make sure I drink plenty of water after. Otherwise I really don't give my fluid intake much thought.

Are you having surgery or still deciding?
Posted 1/20/2014 9:26 PM (GMT 0)
Other than some post-surgical complications in the initial months after my permanent ileostomy surgery (which were all resolved fine), I have not been to the ER with anything directly related to my ostomy. I did have to go to the ER for a kidney stone in November (and I have two more lurking in my kidneys). These are probably related to not having a colon... but I had a kidney stone years ago long before my ostomy too.

Knock on wood, I have never had a blockage (and I eat just about everything), any serious dehydration issues or anything else stoma-related that have sent me to the ER. I suppose I could catch a stomach bug at some point that could send me to the ER a little faster than some of my friends with colons who could probably handle such an illness at home. This has happened to a few of my ostomate friends just because they needed fluids.

Interestingly... the one lasting troublesome thing I have that is indirectly related to UC is that I developed avascular necrosis in my left shoulder from prednisone use and it didn't show up until two years after I stopped taking the med. The pain from that bothers me more than anything related to surgery or my ostomy. I see a lot of talk about surgical risks, but there can be long-term risks with medications too.

That said, I know it is always a possibility to go to the ER or to have a complication but I try not to live in fear of the "what ifs". I have had three wonderful UC-free years since surgery that have been filled with amazing adventures and memories. I have tried to make the decisions that I thought were best for me and if something goes wrong I will cross that bridge when I come to it. I prefer to live healthy and happy in the here and now.
Posted 1/20/2014 9:31 PM (GMT 0)
Heh, a bottle, I mean glass, of wine should be fine >_>.

I would think even a bottle would be okay, though, provided you had water alongside it and afterwards. Even pre-Crohn's, a bottle of wine would have ruined me (I don't have a good head for alcohol). However, I handle beer somewhat better and have drunk it post-surgery without any issues.
Posted 1/20/2014 10:13 PM (GMT 0)

NiceCupOfTea said...
Heh, a bottle, I mean glass, of wine should be fine >_>.

Lol, my friend gave me a huge wine glass as a gift. I think it would hold a bottle of wine! I think I will leave it for display only. turn
Posted 1/20/2014 11:14 PM (GMT 0)
haha! That's me- my glass/bottle is pretty full- regular old sized wine glass, but I do fill it to the brim. So it's like 2 restaurant sized glasses, at least. I can't help it, I swear it keeps me sane, & makes me more relaxed, stress-free, etc. Which has got to help with UC! ByeByeUC, I have nothing scheduled- I just had my 4th scope this past Friday, which showed tons of ulcerations, polyps, & a serious stricture/blockage about 15 cm's up. I knew something was funny these past few months, have been feeling lots of pressure on my left side. My GI has been telling me to get surgery for years & I keep blowing it off. But I'm SO SICK of UC, & SO SICK of UC meds, & SO SICK of the whole bathroom issue. I've known it was an eventual reality, & I just don't feel comfortable blowing it off any longer. The last thing I need is a rupture. I'll talk to my GI this week with the biopsy results (which maddeningly have continued to be clear!), then call the surgeon afterwards. I've met with the surgeon before, & have had 2 other consults with different surgeons in the past. Ugh... I suppose I'm as ready as I'll ever be. Hate the thought of it, I'm a little freaked out by the actual surgery. But enough is enongh. I really feel that if I continue to put it off, it'll be an emergency surgery, which I really don't want!
Posted 1/20/2014 11:20 PM (GMT 0)
I have never been back to the ER since my emergency surgery. Only had one blockage and it cleared on its own.

Good luck!
Posted 1/21/2014 11:05 AM (GMT 0)
Never been to the ED (aka ER) for myself, since I got my ileostomy 36 years ago. Never had a blockage, never been that dehydrated that I've needed extra help (water and/or sports drinks do the trick for me - rehydrate me plus give me needed electrolytes esp after wine lol), never even needed to see an ostomy nurse/doctor for any ostomy related issues for 35 years since I healed up and got better.

PS ByebyeUC, I have that same glass too - and yes, you can put an entire bottle of wine into it :)
Posted 1/21/2014 2:04 PM (GMT 0)
Not only have I not been to the ER since my surgery 13 years ago; I also haven't needed to see a GI either!

Sue
Posted 1/21/2014 5:07 PM (GMT 0)
Sue, I'm SURE you know this so I assume your surgeon is doing it, but just in case anyone else happens by... you still need to have a scope every few years for cancer screening with a j-pouch, which can be performed either by your surgeon or a GI.
Posted 1/21/2014 5:20 PM (GMT 0)
Yes, I am aware, Liz. My surgeon performs my scopes; no longer annually but every other year.

Sue
Posted 1/22/2014 6:09 PM (GMT 0)
Had my colectomy November 2007 and have never been to the ER. I drink plenty of wine (I make my own 5 gallons at a time) but mostly blackberry brandy. I eat absolutely anything and everything. I don't worry about output being too loose or too hard. Maybe I am just lucky.

Just crossed my mind. My cholesterol is low and always has been. My gastro said that people with ulcerative colitis always have low cholesterol. Any comments or experience on this topic?

Dan
Posted 1/22/2014 7:56 PM (GMT 0)
My LDL has always been low but my HDL has always been high. My GP always commented that I was one of his only patients who had higher HDL than LDL.

Active flaring can cause temporary spikes in cholesterol though, so I think a lot of people with UC frequently have high cholesterol!
Posted 1/22/2014 11:25 PM (GMT 0)
I'm not sure of the numbers, but my cholesterol has always been very low too. Polishdan, I can only hope to be as lucky as you!
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