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12-01-2013, 04:53 PM   #1
Myhappyplace
 
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What are your top three tough to deal with things?

So the list of things to complain about with IBD can be long, and my top problems change regularly, but these are my top today, what are yours?

1. Pain. That's always a tough one since it's so draining and takes such a toll.
2. Frequent flatulence. Especially since I never know what may come out with it - blood, mucous, stool, suppositories... Lovely. Makes it difficult to leave the house, which brings me to
3. Inability to do the things I want to do because of pain, not feeling well, weakness, etc. Can't always make it through the grocery store so can't cook my family the dinner I'd like to. Can't take my kid to his music lesson because it's a long walk from where we need to park, there's no bathroom close by, and I would have to sit on a hard bench. Can't volunteer any more in the school since the biologics make me prone to all the kids' sicknesses.....

Make me feel I'm not alone - share your top three difficult to deal with things!
12-01-2013, 05:47 PM   #2
Guy Fox
 
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1. Pain, which is never far away even in remission, and makes me feel ill even when I look well.
2. Grumbling gut noises that can be heard clear across a crowded room and
3. Sudden overwhelming fatigue, out of the blue and demanding that I lie down and sleep.
12-01-2013, 06:18 PM   #3
SarahBear
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1. The unpredictability - especially those moments where your stomach is on edge. It might be okay but then again, it might start shooting 10/10 pain and projectile vomiting, so even though you have to be at work in twenty minutes, you can't leave the house because driving is just too risky. Most frustrating thing ever.
2. Fatigue. Again, especially when you have something you have to do but you just can't because you're too exhausted. I find this more frustrating than pain, honestly, but fatigue does occur more frequently for me and tends to last longer when it does occur.
3. Nausea. I can't stand being nauseous and throwing up is the absolute worst thing for me. I'll take pain over throwing up. I've always had some weird puke phobia; not sure why.
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12-01-2013, 06:36 PM   #4
valleysangel92
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For me it would be
1) the timing of my first major flare/ diagnosis. I'd just got settled at uni, doing what I love, helping people, and just being an ordinary teen, I'd been sick with other stuff since 13 and put uni on hold for surgery (that I'm still waiting for) and then when I finally got there.. Wham.. 3 hospital trips in 2 weeks, throwing up all the time, agonizing pain, my body didn't want to play ball any more, it turns out, that a barium meal I had when I was 15 had picked up 'signs' of something going on, but nothing the radiologist thought was worth mentioning, apparently

2)Peoples perceptions - eg. the 'oh I'm so sorry face ' people give me when I'm find out, it would appear, that a 20 year old with crohns is heartbreaking, even if you've never met them before, don't understand what crohns is and therefore don't know what it's even like, and will probably never realise, I get this look a lot when at the hospital, I end up on ward's with middle-aged /elderly patients a lot and they all think it's tragic and make it their duty to tell everyone that enters the room just how horrible my life is and how brave I must be. I understand it's maybe shocking to them, but I don't appreciate it being everyone's business. Although the people I was with when I had my op, were very nice, encouraging ladies, who helped me get up on my feet a lot faster. There's always an exception . Also, a lot of people think I'm incredibly boring and lazy, since I'm hardly ever out of the house when I'm bad, and I've got strict orders not to get a job at the moment.

3) the long night's awake because of the pred, or the pain, because my mum and dad both work, I'm alone in the days, and although it's a little boring or maybe a little lonely at times, I can generally handle that, but being up at 5 am, when you've not slept all night and can't put the tv on upstairs because you'll wake someone up so you either have silence or go freeze downstairs ( it's an old house, no central heating, just a log burner, which is lush, but it gets very cold when it's not lit) can be pretty miserable really.
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coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
12-01-2013, 07:27 PM   #5
RockyB
 
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Myhappyplace unfortunately we're not alone but atleast we are in a great place for support.... as for me its...

1: urgency: which really sux when your out-n-about... and being a guy I don't carry a hand bag, but now I carry an extra pair of briefs in the car, or I where cargo paints an stuff-m in a pocket, oh and a small roll of toilet paper. next car buying is a van with a built in toilet..

2 pain: only after I'm having my 3rd or more bm in an hour, then I start having dry heaves of the butt ie. uncontrolled forced purge w/no matter, thats painful.... but self medication helps a lot, a lot.... during and after

3 cramps: I get severe mussel cramps, maybe due to the meds or a combination of not exercising/stretching anymore plus gaining weight doesn't help lol...

the 3 E's still trigger a bm for me, eating, exercising, and emotion ie. stress... and I try not to trigger that, but what can you do other then try to find a solution for your issues, like buying a vehicle with a toilet that would help me a lot these days... always hate looking for a places to go... cuz by then its usually to late, and that really sux...
12-01-2013, 07:58 PM   #6
Myhappyplace
 
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Thanks for sharing, friends. Helps to know we're not alone. Interesting to me that so far everyone mentioned pain (even if it wasn't a top three, it was mentioned within the posts). It seems like very few people even know that pain is a part of IBD. I didn't before I was diagnosed, and it's been my biggest issue. Everyone associated it with diarrhea, but nobody knows about all the other problems.
12-01-2013, 08:30 PM   #7
SammyD
 
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1. Pain - Tummy, joint, eye, mouth ulcers.........if it's not one thing it's another. Trying to deal with it at the moment but seriously getting me down and it's getting hard. The unpredictability of it is also hard - it can strike anywhere, anytime, and last from 10 minutes to all day/night, be mild or pretty severe.

2. Interrupted sleeping - either from night sweats or pain waking me up.

3. Fatigue - can be so hard. Low energy makes it hard to get through a day and at the moment I can sleep at any time of day. Having pain everyday and combining that with poor sleep just compounds it.

Wish I could just feel better. I had about 3 hours last week where I was pain/fatigue free and it was glorious! I want that everyday, and I hope its just around the corner....
12-02-2013, 12:03 AM   #8
Samboi
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1. Unpredictability.
One day I'm fine - next day - can't even get outta the house.
2. Pain
Wow it just takes your breath away some days.
3. Fatigue.
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Pred works, all else seems to fail
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12-02-2013, 12:07 AM   #9
guitarjamie03
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My Support Groups:
1. Fatigue
2. Unpredictability
3. Depression (I hate this one because it is so against my character to be depressed, but thankfully it is not every day).
12-02-2013, 12:54 AM   #10
Shiny
 
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1 pain and with CD there's just so many different kinds

2 when the latest flare or problem has lingered long enough that even your most supportive family and friends are fed up with it and you for 'not being better'

3 fatigue and all the things it makes me miss/skip/pass on. (And I also don't understand how I can be so wiped out but unable to sleep)

Hugs to all of us
12-02-2013, 01:47 AM   #11
ronroush7
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1. Needing to go to the bathroom a lot.
2. Feeling uncomfortable.
3. Wishing there was someone to finish up chores when you are having to spend a lot of time in the bathroom.

2
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12-02-2013, 08:06 AM   #12
HorseLover!!
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1. Unpredictability-those times when you can be ok then your insides start attacking itself leaving you with a pain that feels like someone's stabbing you at the same time your projectile vomiting everywhere and when your not at home it just makes it worse.

2. Fatigue-You can barely concentrate or do anything properly-It really knocks you out!!

3. Waking up more than 3 times each night due to horrible night sweats
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Had my first Colonoscopy and Endoscopy at age 2 1/2 years old

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Previous: Prednisolone and Pentasa slow release, Had tube feeding at age 3, Azathioprine

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12-02-2013, 10:21 AM   #13
UnXmas
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I actually found it hard to answer this question. Crohn's is so minor compared to my other illness - my three worst symptoms wouldn't be from Crohn's.

But of the ones that are from Crohn's:


Embarrassing noises! My stomach has always made terrible noises ever since I first got ill. Not the kind of rumbling that indicates hunger - the kind that lets everyone around you know something gross is wrong with your stomach. Now I have an ileostomy which makes even louder noises, some of which sound exactly like farts. I'm trying to keep a sense of humour about it. I realise this seems like a trivial problem: it's not a serious threat to health, it isn't debilitating in any obvious way. But it is so embarrassing. Every quiet, formal situation becomes a source of humiliation. University lectures, church services, two-minute-silences held in remembrance.

Having food and meal times become battles over what your digestive system can tolerate. I try and join in social meals and enjoy eating, especially when a friend or a family member has made something special, or when you're sharing a meal to celebrate something. But you can't ever get away from the physical feeling that you really really don't want to eat.

And up until a few weeks ago, I would have said all the lonely, painful, disgusting time spent in the bathroom. I hate to think of how many hours, days, weeks, years I have spent on the loo; if you added all the times together, it would be a scary percentage of my life wasted. And unlike most symptoms, you cannot be around other people while you are suffering it - you can't even talk about it. If you are in pain, or you are exhausted, you can seek some comfort from others and other people will try to cheer you up or whatever. But the time in the bathroom you have to endure it all on your own.

But now I have an ostomy and my bathroom time has reduced drastically! A few times a day, I take five minutes to empty the bag, clean it, and it's done! So quick and easy - and painless. I wish I had had this surgery done years ago, but am very glad I've had it now.

(Just to add: if pain were a major problem for me, I think that would make my list. I've experienced severe pain after surgeries, etc. But I've always experienced it with the knowledge that it will ease up fairly soon - maybe days, maybe weeks, but I expect it to get better. I know that other people with this disease experience severe pain without that expectation - it's just a constant or at least chronic part of their disease. I am very grateful that so far at least severe pain is not a big part of my disease. )
12-02-2013, 06:17 PM   #14
Cat-a-Tonic
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Valleysangel92, you might want to look into getting a pair of wireless headphones that you can plug into the TV. My mom keeps relatively normal hours, but my dad usually stays up all night watching TV and playing video games, so he uses wireless headphones so that he can be entertained and my mom can sleep peacefully.

For me, the top 3 worst things are:

1. The emotional impact. Not knowing what the future holds (terrible flares? Surgery?), not being able to trust the good days, my mind not being in sync with my body. Depression. Having very unhelpful thoughts like, "Today was hideous and I know I'll have probably thousands more hideous days in my lifetime and this awfulness will keep happening forever and will never stop until I die." Bursting out into tears in inappropriate places (like at work, ugh). All of that stuff is, to me, even worse than the physical impact of being ill.

2. Having to listen to my body even when I don't want to. I like to work out, it's my favorite thing. It makes me feel great most of the time. But sometimes I feel yucky and my body tells me to rest. I *so* do not want to rest, I want to work out or at least do something productive. But I have to rest and I hate that. I hate feeling worthless and doing nothing. I hate listening to my body when I feel like what it's telling me is wrong. And I hate being punished when I don't listen to my body and push myself too much and then have to deal with the consequences.

3. Nausea. Like SarahBear said, I also have a strong aversion to vomiting and will do everything in my power to avoid it. This means I probably spend more time nauseous than I should, as I tend to not vomit and stay miserable, rather than vomit and get it over with and maybe feel better. I hate vomiting more than I hate most things, and nausea is almost as bad as vomiting. When it comes to physical symptoms, they are the worst!
12-02-2013, 06:33 PM   #15
ronroush7
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I should have put down as number one the couple of times I have been embarrassed by getting wick where it was very obvious.

2
12-02-2013, 07:34 PM   #16
valleysangel92
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Thanks cat! Funny you say that.. My mum said the exact same thing to me about 1.5 hours ago :P sounds like they could be a good investment .
12-03-2013, 05:48 PM   #17
LucyCarroll
 
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1. Pain. I get overwhelmed with it. Then I get tense and make it worse.
2. Fatigue. I also have thyroid issues so it is a double whammy. I fell asleep at my desk this morning. Thankfully, no one walked in.
3. Diarrhea. Constant even in remission.


12-03-2013, 11:47 PM   #18
ronroush7
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1. Pain. I get overwhelmed with it. Then I get tense and make it worse.
2. Fatigue. I also have thyroid issues so it is a double whammy. I fell asleep at my desk this morning. Thankfully, no one walked in.
3. Diarrhea. Constant even in remission.
I don't know how much of it I can blame on the disease but there were times before I retired when I fell asleep at my desk.
12-04-2013, 07:34 AM   #19
MissCadenza
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1. Fatigue - this sucks big time because I used to be a proper gym bunny before I got diagnosed, now I get knackered just walking the 15 minutes into the town centre from my house.

2. Having to eat - this may sound odd, and I do love food, but the fact I HAVE to eat to keep myself functional and upright through the day really gets to me. Especially the fact I have to eat last thing at night to stave off the Imuran-induced nausea. I used to have three meals a day, now I have six (small ones) and have to carry snacks with me and a bottle of energy drink just in case. Problem is I sometimes forget, and when I was on holiday with my mum I hadn't eaten for two hours because we were out shopping, and I just crashed. Had to be taken back to the hotel in a taxi :3 Put a bit of a bummer on our shopping day but we made up for it later in the holiday.

3. Acne - even though I'm off Prednisone now, my skin is terrible. I have about as much acne as I had when I was a teenager! I'm vain and I freely admit that, and quite frankly thank god for whoever invented foundation. It would just be nice if I could wear makeup on totally clear skin, not all bumpy and horrible with spots. Ugh.
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12-04-2013, 08:27 AM   #20
nogutsnoglory
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My Support Groups:
1. Extreme fatigue
2. Balance and dizziness issues
3. Diarrhea and high output for my ileostomy.
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