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I will never understand why negativity is a bad thing

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Ostomies
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NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11084
Posted 6/22/2013 4:33 PM (GMT -7)
Let me tell you a story about a very positive person, folks. A very positive person who expressed gratitude for everything in his life, posted inspirational quotes, and went to the gym regularly.

He committed suicide.

Let me tell you a story about a very negative person, folks. A very negative person who doesn't express gratitude for being so ill she now needs a permanent stoma, whinges constantly, and doesn't exercise.

She's still alive.

Both are true stories.

If whinging is what it takes to keep me alive, so be it. We cannot all be perfect and this is a difficult, difficult world for many.
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bostwis1
Regular Member
Joined : Jun 2010
Posts : 271
Posted 6/22/2013 5:38 PM (GMT -7)
Negativity is not healthy. I've spent the majority of the past six months in the hospital and I developed severe anxiety. I had constant negative thoughts. My psychological issues worsened my physical symptoms. My thoughts made me sick and physically weaker. I chose to get help. I keep myself busy and spend time with people as much as a I can. On the days I am alone and my mind wanders toward negativity, I take a xanax to relax me. Your psychological state has a tremendous effect on your physical health.

Whining is not going to help you. Stop feeling sorry for yourself. It is what it is. Not everyone is dealt the best cards in life. You have to make the best of it.
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ambling
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Posts : 1075
Posted 6/22/2013 6:01 PM (GMT -7)
Negativity is a fact of life. It's part of the many aspects of a human. Unfortunately people are taught that it is ugly, just as they are taught that being tough, and not expressing pain, is beneficial. In fact these ideas are harmful. Unnaturally suppressing bad feelings or thoughts is counter-productive.

People are afraid of anyone who displays what is commonly considered 'weakness', and of anyone who challenges the common view. That fear causes the passive aggressive behavior, and worse.
It is healthy to have the broadest range of views, including those which may make some uncomfortable. It is unhealthy to try to stifle people who are expressing 'feelings' which are real.
After the pain, pleasure arrives.
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NiceCupOfTea
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Posted 6/22/2013 6:53 PM (GMT -7)
Thank you so much, ambling.

Thank you for understanding. Email me; or I'll email you soon.
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Another UC wife
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Joined : Jun 2007
Posts : 2111
Posted 6/22/2013 7:27 PM (GMT -7)
Every one of us has some negativity...it is human nature. Nothing wrong with that.

When it consumes you and makes you a toxic person those around you will put up with it for so long and then tune you out. Sorry but that's how it is. In my lifetime I have encountered many people like that...some I had to work with. You find ways to distance yourself when you just can't seem to help that person.

Family is different however and you have to endure far more with a person like that but you can also insist on getting help when it is family unlike a friend or coworker. Fine line between "tough love" and being an enabler too.
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NiceCupOfTea
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Posted 6/23/2013 9:20 AM (GMT -7)
Nice, so I'm a 'toxic' person now? Look, I'm not mad at you, but these are the kind of comments I've been dealing with ever since I began posting on the Ostomy board. It's like when my mum calls me things like an 'infant' and denies it means anything. Now don't get me wrong, I am absolutely not the perfect daughter. But she thinks, when we argue, that I'm the only one to say horrible things to her and she never, ever says a hurtful thing to me.

But that's my mum and her good points more than make up for that.

I know I'm not perfect. But I also know when other people aren't perfect.

PS: A lot of the time, my 'negativity' is simply dark humour. I used to think people got that it was dark humour, but I've now come to the conclusion that probably 90% of my humour on this board has been taken at face value. I don't make any claims to being actually funny; but it lets off steam for me and tickles my silly humour buds.

Post Edited (NiceCupOfTea) : 6/23/2013 10:23:20 AM (GMT-6)

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Marsky
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Posted 6/23/2013 10:30 AM (GMT -7)
nicecupoftea - thought all this time you were a crabby woman but by skimming a handful of your posts, I think I've pegged you all wrong - you're a guy?

Not that gender gives you any right to be as disagreeable and toxic as someone here pointed out. Be a decent human being first and foremost.

It's just that if you are a guy, I clearly remember my former ostomy nurse telling me that most men have an extremely difficult time caring for an ostomy. They find the very idea of stool output into a bag so foreign and gross, she told me she so rarely came across a male patient with a healthy approach to having an ostomy. I laughed a bit because one minute I was crying, at the time, I didn't want one either but I said to her - do you think it's because women have gross things to deal with anyway? Periods, childbirth, etc. She said - bingo. You nailed it. I remember looking at my clear ostomy bag announcing outloud - okay I've changed hundreds of yellow mustard looking diapers in my day (and cloth ones way back in the 70s when I babysat), dealt with messy periods and then delivered two babies. I thought - I can handle an ostomy. What's ONE MORE MESSY thing to take care of?

So if I'm way off base here, my apologies. I do wish you'd try harder to get along with everyone here - I love it at HW. Call me a Pollyanna, but I do - this is a nice place.
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Pluot
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Posted 6/23/2013 11:06 AM (GMT -7)
I don't want to get into a big argument, but I'll bite on one thing... dark humor.

In real life I'm an extremely sarcastic person with very dark humor, and it's gotten me into hot water more than a couple times with people who didn't get it... But one thing I've learned over time, and especially because my job involved a lot of communicating through email/writing, is that sarcasm and dark humor do not play online. If you want to record a YouTube video of yourself slagging off on whatever and making jokes, or Skype with your friends, that'll be fine, but even if you're typing to the most jaded, sarcastic people on the Internet, they probably are not going to understand what you're saying. So many misunderstandings happen between people, even people who are friends in real life, because of sarcasm that isn't interpreted properly. In the past I've texted sarcastic jokes to friends only to see them the next day and find out they're really upset with me!

I think in order to get along when communicating online, especially in a community like this where you have no idea who your audience is, you have to just tone it down and say what you mean. Like it or not, if you read something that was written as sarcasm but think it's sincere, most of the time it's going to sound... extremely harsh and mean. I save my jokes for my friends and family. Actually I think if they read the way I post on here they would laugh because it's so polite and unlike me -- but that's what's necessary to get along. I don't come here to make jokes or, honestly, even express myself, I come here to share information and my experience with my ostomies.

And Marsky -- SO TRUE. I had my period this week (after a long break due to health stuff) and I really think it was a lot grosser than my ostomy bag...
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Probiotic
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Posted 6/23/2013 11:46 AM (GMT -7)
Excellent post, Pluot, and your advice, as you say, applies to both private email and public forums. To some extent, the use of emoticons such as ;) and :) or <g> and "lol" can let one push the envelope here and there with sarcasm and black humor, but it has to be clear as a bell. Even with close friends and family, I occasionally forget a good emoticon and have to back peddle or throw one into a PS message.
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Marsky
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Posted 6/23/2013 11:55 AM (GMT -7)
Liz, I'd like to take credit for that analogy - women vs men and their approach to an ostomy - but my ostomy nurse was the one that put me on that path to understanding. I had such a weepy day that particular day in the hospital, I swear I could not stop crying. She allowed me to cry, as did the nurses and nurses' aides, all were so nice, brief reason, I had a one day notice I was not going to have my simple 1 hour surgery, to scoop out my tumor, but rather a 5 hour procedure, a 7-10 hospital stay, and most likely an ostomy. They thought my tumor was penetrating the third bowel wall tissue but it wasn't. It was touching it, about to penetrate. So in theory I could have had the simple 1 hour surgery, a 1 day stay, chemo and/or radiation, wasn't sure at the time. Being away from my kids, they were 3rd and 6th graders, was killing me. I was a stay at home mom back then, very involved at their school too - all of it came to a grinding halt when I entered the hospital.

God Bless my former ostomy nurse, didn't need her for long but she seemed to know just what to do - hold your hand, give you a tissue, allow you to cry, or provide another POV you hadn't even considered. She was a gem. Still a very popular ostomy nurse I hear.

I wish everyone with an ostomy could have someone like her. After her common sense approach to what had been done to me, I decided right then and there to buck up and make the best of my situation. But I do think you need gentle encouragement to arrive at the conclusions I did. I looked at that brown output and thought, color it red and it could be my period. lol
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NiceCupOfTea
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Posts : 11084
Posted 6/23/2013 12:18 PM (GMT -7)
So now I'm toxic and disagreeable?

You all go on about me, sometimes to my face, sometimes not, but do any of you ever look at yourselves?

@Pluot - You are quite wrong (in my opinion of course). I have been a member of many online communities where dark humour and sarcasm play out extremely well. You'll probably tell me to go back to them, but they have either disbanded or are so much quieter than they used to be, there's nothing really to post anymore.

Heck, even on the Crohn's and Depression boards on this site, the guys there seem to accept me pretty much as I am, dark/goofy/sarcastic humour and all. So, no offense, I really do think it's just this particular board and this particular community.

Pity, as I've like I've said before, it's not exactly like many people have an ostomy and so I would like to genuinely converse with other people who have an ostomy - but not at the price of pretending I love the ostomy and the operation was the best day of my life. Oh, and I'm not a guy. If I can ever get the photos onto my rubbish laptop, you'll see... >.>

Edit: Yay, I have now :p

Post Edited (NiceCupOfTea) : 6/23/2013 1:36:46 PM (GMT-6)

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NiceCupOfTea
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Joined : Jan 2010
Posts : 11084
Posted 6/23/2013 12:29 PM (GMT -7)
By the way, if what you said was really true, then no humour, satire or irony in text would ever work.

I am the same person on the internet as I am in real life. No, that's not entirely true. I'm shyer in real life, but otherwise I laugh at the same things and have the same humour.

I love humour, it is literally my life saver.
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Pluot
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Joined : May 2012
Posts : 2500
Posted 6/23/2013 12:33 PM (GMT -7)

NiceCupOfTea said...
So now I'm toxic and disagreeable?

You all go on about me, sometimes to my face, sometimes not, but do any of you ever look at yourselves?

@Pluot - You are quite wrong (in my opinion of course). I have been a member of many online communities where dark humour and sarcasm play out extremely well. You'll probably tell me to go back to them, but they have either disbanded or are so much quieter than they used to be, there's nothing really to post anymore.

Heck, even on the Crohn's and Depression boards on this site, the guys there seem to accept me pretty much as I am, dark/goofy/sarcastic humour and all. So, no offense, I really do think it's just this particular board and this particular community.

Pity, as I've like I've said before, it's not exactly like many people have an ostomy and so I would like to genuinely converse with other people who have an ostomy - but not at the price of pretending I love the ostomy and the operation was the best day of my life. Oh, and I'm not a guy. If I can ever get the photos onto my rubbish laptop, you'll see... >.>

I can only speak from my experience online, both professionally and personally. I do not believe that you would be judged or shunned here for speaking plainly about difficulties and negative feelings about the stoma. I'll be honest, my loop is a total POS -- it works and isn't flush which I'm thankful for, but I empty 8+ times per day, and I was up three times last night just because I had one alcoholic drink (along with THREE tabs of Imodium). It's frustrating. In my opinion it is still better than living the way I was with UC, but I won't deny being annoyed with "loop life." I'm not really looking forward to takedown because I'm very scared of using my j-pouch. I already have cuffitis (rectal bleeding and inflammation), and I'm scared of developing pouchitis, having butt burn, being incontinent, leaking during sex, not being able to work anymore... In any case it's where I'm headed and might be an improvement over the loop ileo, so I soldier on.

Times when I have taken issue with things you've said were 1) when your negatives feelings were directed towards specific people here and 2) when, quite frankly, you have said things that were plainly suicidal. With regards to #1, a tip I learned from couples counseling (oy) is to remember that you can only speak about your personal experience. You can say you hate your stoma, wish you never had it, prefer life with Crohn's, etc etc -- but you have no idea what other people are going through. You don't even know if the sky looks the same color to me as you. People tend to be very sensitive about their experiences, especially something as emotionally charged as an ostomy, so the statement "I don't like my stoma" is MUCH less inflammatory than "No one could like having a stoma," for example.

Now, regarding #2: When someone's life is on the line I personally can't just assume you are kidding. I have had friends commit suicide and perhaps if things they said were taken seriously they would still be alive. I know you implore us over and over again to hit the Ignore button, but I still believe it's possible that something I say will make a tiny bit of difference and make this resource more useful to you and help you have a better experience. Maybe I'm naive.
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NiceCupOfTea
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Joined : Jan 2010
Posts : 11084
Posted 6/23/2013 1:00 PM (GMT -7)
Yay, I've finally got the pictures onto my laptop :p

That's honestly the first time I ever remember you saying anything bad about your stoma. Thank you for being honest. If more people spoke out like that, I'd feel less alone in my situation. I hope that the j-pouch is as successful for you as it was for, say, suebear. Even though my odds for a reversal are low, I may be able to have an ileorectal anastomosis, but my fears about it are the same as yours about the j-pouch: butt burn, incontinence, etc.

I can't remember directing my feelings towards any individuals apart from Tom1, and he was thoroughly unpleasant towards me first. If you wanna name names, name particular threads, etc., I'll take a look 'cos I really can't remember any individual who I've had a go at. Oh yeah, I did call out Pro once. But I did apologise to him for that, because I overreacted to a comment he made. Pro is all right.

Usually I do just say "I don't like my stoma", but it is my opinion that most people don't want a stoma as well. If you disagree with it, take it up with my stoma nurse and my mum, 'cos they've both said exactly the same. But I'm not offended: I think of it as reality, and I agree with it. Unfortunately sometimes a stoma is a necessity, but it is not an inherently desirable thing, in my opinion. If people feel bad about that, I dunno what to say, I really don't. If you need a colectomy, then you need a colectomy. I don't think anyone should live in years of misery and I would encourage anyone in that position to bite the bullet and book an operation as soon as possible. Okay, I'm sorta semi-joking now, but I do also really believe it: the stoma sucks, but the alternative (carrying on as you are) sucks even more. When I said I would prefer to live with Crohn's, I meant the early years of my Crohn's, not the last two years.

I really, really, really hope I haven't mortally offended with that last paragraph... Not trying to upset anyone, not trying to say they shouldn't like their stomas, or be grateful to be well again, etc. I just have some awkward feelings about the whole thing, which I have yet to fully accept.

By the way, I don't deny being depressed to the point of feeling suicidal at times, but humour helps me with that. And I am less depressed than I have been: I'm determined to fight to get better once again.

Okay, gotta dash, my French drama The Returned is about to start >_>.
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Pluot
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Posted 6/23/2013 1:11 PM (GMT -7)
OK NCOT, I was worried if I posted I would regret it, but I think we're seeing eye to eye here more now. Honestly I think it's a question of semantics here more than anyone else... I think it's 100% true that no one would list a stoma as their #1 choice if they could live any possible way. My #1 choice would be to have never gotten sick, clearly, and I'm quite sure everyone here would say the same thing.

However -- given that I got sick, given that I was a non responder to almost all drugs, given that I was dying -- I'm very happy that a stoma was an option for me instead of just, you know, dying at 26. And given that I had severe, medically refractory ulcerative colitis and there's no way to change that, I'm happy with the life I have with my stoma. I like my stoma because without it I'd be dead. Someone like ddd45 will tell you that she loves her stoma because not only did it save her life, but she was put through an additional hell with an extremely poorly functioning j-pouch. But if time machines existed, or a true cure for IBD (not that "I ate raw spinach and quinoa for three months and cured my Crohn's" BS), then yeah, I would LIKE to poop once a day out of my butt and never even think about it. That ain't gonna happen, and despite the challenges, I like that I've gone back to a 90% normal life because of the bit of intestine sticking out of my belly.

I don't think anyone here is going to argue that having a stoma is a better way of life than being 100% healthy, but we take it as a given that the people who post here don't have that option. You have to accept your situation (UC, Crohn's, cancer, etc) and pick the best option that is realistically available (ostomy, j-pouch, k-pouch, etc).
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Bay Area Guy
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Posted 6/23/2013 1:46 PM (GMT -7)
Nice Cup of Tea:

I'll put in my two cents worth, but first. Little history. In May, 2010, I went to the hospital with severe abdominal pain that was, eventually, diagnosed as a volvulous. My sigmoid colon had twisted 540 degrees and was effectively completely shut off. Result was surgery to remove 18 inches of my colon and a temp ileo. During recovery, I got dehydrated, so I had to go back in and get n NG tube. Then a week later, had to go back in for another 10 days because the NG tube resulted in some junk aspirating into my lungs and causing pneumonia. All in all, I spent all but about 4 days of that month in the hospital.

OK, history lesson over. I hated the ileo. I hated emptying it. I hated it when it leaked. I hated that I couldn't sleep on my stomach. I hated that I had to put my wife through two months of hell because I couldn't take care of myself. However, bottom line, I guess it was better than the alternative. Thankfully, I have been reconnected lost three years now and, with the exception of not being able to drink wine, things are fin.

Negativity has its place and I agree with others who say no one in heir right mind is going to say, "oh yeah, that stoma? I want one even though I don't need it." For you, a permanent ileo is a necessity to stay alive. But that doesn't mean you need to like it. Having said that, it's something you need to accept and, as long as the negativity about it doesn't extend to your overall life, I guess that's fine. But, if it does, you need to find an outlet. Perhaps counseling on how better to cope or perhaps an in-person support group would help.

One thing about the Internet, because of the anonymity with which people can post, some humanity can go out the window and posts can get nasty as there is no repercussion for a rude post. That's why, in your case, something face-to-face would likely be a lot more helpful.

OK, so maybe that was more like my nickel's worth than two cents. But I truly hope you can find some kind of inner peace for yourself.
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NiceCupOfTea
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Posted 6/23/2013 3:05 PM (GMT -7)
@Pluot - Exactly. I think everyone's #1 choice would not have been to have got sick in the first place. Who wants to go through all those wasted years being tied to a bathroom, sick, ill, fatigued, etc.?

And absolutely: I would choose stoma over dying. In fact I did. Nobody told me I was gonna die and, indeed, with modern medical treatment I wasn't likely to. But I did develop toxic megacolon at one point and that's usually grounds for an immediate colectomy - but the iv steroids kicked in and my GI argued for giving Remicade longer to work, so I was spared from surgery that time. Long story short, I was just delaying an inevitable outcome, but I do respect my GI for trying his best.

@Bay Area Guy - Ouch, that sounds traumatic. I'm glad things are fine now, though.

I agree about needing to accept the stoma. I can see why people are grateful for the opportunity to live a normal life again, but I think part of my problem is I don't have that normal life yet. I'm obviously better than I was with Crohn's, but I have had issues with my skin (including a mysterious itching condition) and with some serious fatigue (not helped by insomnia). I think if I can reach a point where I finally feel as healthy as I did pre/early Crohn's, accepting the stoma as a part of my life will become so, so much easier.

I'm waiting to see a psychologist on the NHS, btw, but NHS waiting times do tend to be a law unto themselves. I'll get there in the end, but I might have to phone up a couple of times to remind them I am meant to be seeing this guy.

Anyway, in general I'll back off, be less abrasive, find another board to be utterly hilarious (<_<) on, and so forth. Cheers :p
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Sherrine
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Joined : Apr 2005
Posts : 18414
Posted 6/23/2013 3:40 PM (GMT -7)
You might want to have your magnesium levels checked out. Most people are low in magnesium to begin with but if you urinate a lot or have diarrhea, that can cause you to lose magnesium faster.  Low magnesium causes fatigue.

 

My output is usually more watery.  I drink a lot of water since losing my colon, too, and makes me run to the bathroom more.  Plus I have chronic pain and fibromyalgia.  One of the hallmarks for fibromyalgis is fatigue.  fatigue isn't a huge issue for me and I think it's because I take magnesium supplements daily.  Google it and see what you think.  I know you have mentioned the fatigue in other posts.  Hope this helps.

 

Sherrine

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NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11084
Posted 6/23/2013 3:57 PM (GMT -7)
I'll look into the magnesium - thanks. My stoma nurse recommended Berocca, a multivit supplement in the form of a fizzy drink. She thought that regular vitamin tablets weren't suitable for people with an ileostomy, as apparently a lot of the vitamins end up in the bag. I'll see if Berocca contains magnesium as well.

Just googled it. It does, but only 25% of the RDA :-/ Almost everything else is well over 100%, so not sure why it's so low in magnesium. I'll get the Berocca but look for a separate magnesium supplement.
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Sherrine
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Joined : Apr 2005
Posts : 18414
Posted 6/23/2013 4:15 PM (GMT -7)
I use magnesium malate.  It also has malic acid in it.  Malic acid is found in apples but I'd have to eat a bushel to get what I get in the supplement.  Plus magnesium malate is a highly absorbable form of magnesium.

 

Word of caution, though.  If you start magnesium, start out slowly.  It can cause diarrhea until your body gets used to it.  I didn't have a problem.  The supplements I took had 150 mg of magnesium malate in each pill so I only took one and waited to see what my body would do.  Then, when things looked "normal" I took two a day...then three a day.  I now get around 700 mg of magnesium daily with these supplements plus what is in my multiple vitamin.  But, I am going to get my magnesium levels checked to make sure I'm absorbing things.  

 

Both magnesium and malic acid help with fatigue, by the way.

Sherrine 

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Pluot
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Posted 6/23/2013 4:53 PM (GMT -7)
Magnesium also helps with insomnia... Speaking of bathing (from the other thread wink ), a warm bath with epsom salts is a good way to absorb a mild amount of magnesium before bed without having to worry about pill absorption.
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Bay Area Guy
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Joined : Jul 2010
Posts : 301
Posted 6/23/2013 6:33 PM (GMT -7)
This is going to sound gross and when I first did it, it was gross, but I got used to it. When I had the ileo, I would crush a regular multivitamin and mix it in with the cream of wheat I would have for breakfast and a second helping for a pre-bed snack.. My issue at the time (among other things) was anemia. The multivitamin I took had 50% of the iron I was supposed to get, so taking two a day meant I was supposedly getting the iron I needed. It tasted odd the first few times, but I got used to it. It must have worked too, because my iron level, which was pretty dangerously low when I was discharged from the original operation, got back up to normal within the two months I had the ileo. All that time, my surgeon was telling me she wouldn't be able to reconnect me if my iron level was too low, so I had one heck of an incentive.

If it works for iron, it should work for all the other goodies in the vitamin as well.
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summerstorm
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Posted 6/23/2013 9:12 PM (GMT -7)
Ncot have you tried zantac or prilosec for your itching? For some reason they help with that.
Why would you crush a vitamin? Just take a flintstones, when I was pregnant the ob told me it was just as good as any other.
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NiceCupOfTea
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Joined : Jan 2010
Posts : 11084
Posted 6/24/2013 6:54 AM (GMT -7)
Thanks folks - that's very helpful stuff about the magnesium :p

I'll also look for epsom salts at the supermarket >_>. I hadn't taken a bath for about 15 years until I had the operation, then as soon as I got home from the hospital I ran a bath and sat in it for about two hours. It was restorative.

Bay Area Guy - Crushing tablets should work, unless they're specifically designed not to (ER oxycontin, for example. You can't destroy the ER mechanism by crushing the tablet. But that's not gonna apply to a simple multivitamin pill.) By the way, I used to have problems with anaemia and couldn't tolerate oral iron: iron transfusions worked really well for me, though. (Well, not the first time, 'cos I had an anaphylactic reaction... >.>. But with a different formulation and a slower infusion rate, it always went fine after that.)

summerstorm - I've taken omezaprole (generic prilosec), usually when I was on the Pred. But I haven't taken any since the itching began. I'll see if my dad has any I can try!
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summerstorm
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Posted 6/24/2013 7:29 AM (GMT -7)
I meant pepcid, but prilosec might work also, they are all the same thing.
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Diving With Crohn's Disease


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