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01-12-2014, 11:42 PM   #1
Sunione
 
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The top three things you hate about having Crohn's

My list of the top three things I hate most about having Crohn's goes like this (next week or tomorrow even it might read differently):

1) The feeling that my life is over is the hardest to deal with from day to day. I am by nature a person who likes to be busy, to push myself and when I do that now the price may be days bedridden with exhaustion and/or pain or worse. I feel caught between a rock and a hard place. So many things I expected to accomplish will (most likely) never get done.

2) Having to disappoint others by changing plans at the last minute. My social
life has pretty much disappeared. My youngest son (38) has written me out of his life. How much that is about the Crohn's I'm not sure but he once told me that colitis was not a disease (that was before my diagnosis of Crohn's) as if I were just looking for sympathy. A close friend since high school has recently given up making plans with me or coming to visit.

3) Not knowing what tomorrow will bring. Will I be in the hospital? Will I be bleeding profusely? Will I vomit until I pass out when I'm alone? Will I have a reaction to the Remicade? Will I have to have my colon removed? Can I get a new GI DR if my current GI moves or becomes unavailable? Will I be out in public and have an accident? Will I lose my health insurance? I could go on and on about the things I needlessly worry about.

What heads up your list?
Suni
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*Diagnosed with Crohn's Colitis
*Currently on REMICADE; 5mg every 8 wks
*Gluten free for past four years
*Severe reaction to Asacol (nearly bled to death)
*A recto-vaginal fistula named
*Plus another fistula that exits somewhere near my urethra

Some other fun conditions:
*Hypothyroidism
*Degenerative disk disease
*Fibromyalgia
*osteoarthritis
*Carpal tunnel
*Bulging disks in neck
*Depression/anxiety
*Incurable sarcasm
01-13-2014, 12:43 AM   #2
Brenden
 
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1. Mental Toll
It can be hard to keep your thoughts positive living like this. Crohns contributed to my depression, anger issues, overall fatigue and has taken away my energy

2. Weight Loss
I can't for the life of me gain weight. This put an end to my body building career

3. Lack of Understanding
People who don't understand IBD are a huge pain to me. When i come to school feeling sick and upset im not in a great mood. According to some of my classmates its because im on my "man-period"
01-13-2014, 02:37 PM   #3
Sunione
 
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[QUOTE=Brenden;738361]1. Mental Toll
It can be hard to keep your thoughts positive living like this. Crohns contributed to my depression, anger issues, overall fatigue and has taken away my energy

Pretty much impossible to find any upside of having Crohn's. I cope by putting all my effort into creating art as it is one of the few things I can do without causing symptoms. Anything like that for you? Music, writing or art?


2. Weight Loss
I can't for the life of me gain weight. This put an end to my body building career

Sorry to hear that you must pass on competing in body building. On this one I cannot relate as I can gain weight breathing. I was thrilled to lose 60lbs due to Crohn's, it is probably the only upside for me.



3. Lack of Understanding
People who don't understand IBD are a huge pain to me. When i come to school feeling sick and upset im not in a great mood. According to some of my classmates its because im on my "man-period"[/QUOTE]

That is a biggy. I struggle with this also but in a much less vulnerable situation. I cannot imagine the emotional toll this takes on a student. Sending you a big hug.

Suni
01-14-2014, 04:18 AM   #4
steph_irish
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1. Never being able to trust a fart again
It's just never going to be the same again

2. Non crohns sufferers becoming an expert and offering stupid advice.
Everyone knows the cure and also the cause, what you need to do, just cause they consulted Dr. Google or suffer bloated tummy after eating something that just DIDN'T AGREE WITH THEM.

3. Worried that it will affect my ability to have a baby.
01-14-2014, 04:31 AM   #5
steph_irish
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1. Mental Toll
It can be hard to keep your thoughts positive living like this. Crohns contributed to my depression, anger issues, overall fatigue and has taken away my energy

2. Weight Loss
I can't for the life of me gain weight. This put an end to my body building career

3. Lack of Understanding
People who don't understand IBD are a huge pain to me. When i come to school feeling sick and upset im not in a great mood. According to some of my classmates its because im on my "man-period"
I'm sorry to hear it affects you like this, thats tough when you have to change your lifes goals. and when people just don't understand. To be honest I think it's easier when your older to go through stuff like this. I wish I could take it away from all young people.
01-14-2014, 11:51 AM   #6
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I am lucky in the fact that my crohn's doesn't effect my day to day activities like most, however I feel like I get the odd symptoms like eye inflammation, fistula's and other related issues like PCOS.

1. Humira injections
2. Feeling like as a bi-product of Crohn's I got PCOS as well. Which created a whole other set of issues
3. Not being able to eat everything I want to, but people think since I am so small I am so lucky to eat whatever I want.
01-14-2014, 02:51 PM   #7
mish2575
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01-14-2014, 03:29 PM   #8
grt73
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It used to be,
The way the cramps and pains could floor me without any warning

The way no medication worked because the docs told me I had ibs and depression

The utter despair that life for me was different from other people

It's now

Dam this god dam bag

Why can't I eat foods that I used to love so much

How far is this gonna go before it finally wears me out

Now I'm not religious or anything but sometimes I do feel I must have done something pretty bad in a previous life!!!
01-14-2014, 06:32 PM   #9
Ki3
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My mental health. I think I'm scarred for life.

My dance fell behind. I missed A great performance and my exams.

My social life. I have lost many great friends due to this disease.
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01-15-2014, 12:37 AM   #10
Sunione
 
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Kitty.....I so wish that you did not have to through this..... at your age especially.

Grt73.....my GI thinks I need surgery to remove my colon and because of the fistulas the surgeon suggests the stoma route. So many on here sound like having a bag is the best thing that ever happened to them. So not so much for you?

Mish......today I had my REMICADE infusion, a one year anniversary. Apparently I will still be doing this for the rest of my life. Something to look forward to right?

Blue star....what is PCOS? Are the Humira injections painful?

Steph....I get jealous whenever my husband casually 'rips' one! I feel that passing gas is now akin to Russian roulette.
01-15-2014, 12:43 AM   #11
nogutsnoglory
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1. The loss of ability to live life freely whereas now everything must be carefully planned and calculated.

2. The feeling of being old, tired and sick when in reality I should be in the prime of my life.

3. The mental toll it's taken on me and my family.
01-15-2014, 01:11 AM   #12
Sunione
 
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Noguts....you know your #1 hate is something I never thought too much about (having to plan and calculate). I guess I have been doing that all my life without thinking there could be another way. Hmmm.
01-15-2014, 04:08 AM   #13
steph_irish
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Kitty.....I so wish that you did not have to through this..... at your age especially.

Grt73.....my GI thinks I need surgery to remove my colon and because of the fistulas the surgeon suggests the stoma route. So many on here sound like having a bag is the best thing that ever happened to them. So not so much for you?

Mish......today I had my REMICADE infusion, a one year anniversary. Apparently I will still be doing this for the rest of my life. Something to look forward to right?

Blue star....what is PCOS? Are the Humira injections painful?

Steph....I get jealous whenever my husband casually 'rips' one! I feel that passing gas is now akin to Russian roulette.
I like that Russian roulette OMG that made me chuckle
01-15-2014, 06:38 AM   #14
ronroush7
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1. Never being able to trust a fart again
It's just never going to be the same again

2. Non crohns sufferers becoming an expert and offering stupid advice.
Everyone knows the cure and also the cause, what you need to do, just cause they consulted Dr. Google or suffer bloated tummy after eating something that just DIDN'T AGREE WITH THEM.

3. Worried that it will affect my ability to have a baby.
I like the first one here. Also, going to the bathroom so much and how it affects my daily activities sometimes.

2
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01-15-2014, 12:37 PM   #15
steph_irish
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1. The loss of ability to live life freely whereas now everything must be carefully planned and calculated.

2. The feeling of being old, tired and sick when in reality I should be in the prime of my life.

3. The mental toll it's taken on me and my family.
I really feel your #2 I used to feel so healthy and energetic. Like you I should b in the prime of my life also.
01-15-2014, 01:43 PM   #16
grt73
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Hi sunione

It's a love hate relationship with my stoma, on one hand it has given me the ability to be alive still. My crohns pains are much less and I have an appetite that food can't put out and it's real hard to put on weight. Some people's dream!
On the flip side I am stuck with a plastic bag when I should be in my prime of life. I did ten years in the TA so was always fit and active, no more skydiving or such like for the mean time I guess. That hurts mentally. I also have the constant reminder of why I have the bag too which is also a burden and sometimes a worry!
01-15-2014, 02:02 PM   #17
ronroush7
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I know this will make it four things but I hate the fact that I retired early because the commute was making it harder to recover fully from my resection.

2
01-15-2014, 06:03 PM   #18
valleysangel92
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For me it has to be -

Loss of time with family and friends, due to being so ill the past few years I've missed out on a lot of social events, haven't seen much of my friends and have almost lost contact with some. When seeing family I've either been in too much pain to engage fully or just too tired to stay and had to leave early. I still can't plan things in advance, since I have no idea what state I'll be in and waiting lists here mean that I could still be waiting for tests 6 months from now.

2 - dropping out of education, I was studying to be a nurse, specialising in the care of children , when my crohns struck hard, and as a result I had to leave 3 months into the course. I know there is always the chance I will get to go back , but that won't be for at least a year and a half, probably more (again, nhs waiting lists) and that's time I could be spending making such a big difference, instead, I'm not allowed to work (doctors orders) and I'm stuck at home while everyone else moves forward.

3 - the mood swings, I think we can all relate to that feeling when you've just had enough, and someone says the wrong thing at the wrong second and you just snap.. Or someone you love and care about is telling you that their finger hurts or they have a slight cold, and you really try to be sympathetic, and be there for them, but inside your wishing that was all you had to worry about..



But I also have somethings I like... It's made me stronger, I have more guts now, I stand up for what I believe in, and I know that if I do get that chance to go back to uni I would give 150% and I will be a much better nurse because of my own experience. Plus, without this, I never would of had the pleasure of talking to the wonderful people here. I know that I will never take the little things for granted the way so many people my age do.
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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
01-15-2014, 08:08 PM   #19
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My list would change day to day I guess, I've been dealing with crohn's, ostomy and everything that goes with it sense 1969.

It only takes visiting my Doctors office at Shands to remind myself how blessed I'm, there is always someone there in far worse shape than I'm in. My last visit there was a young man confined to a wheel chair. You don't have to look far or hard to find someone in worse shape health wise.

Not being able to gain weight as it really makes you stand out in public would always be near the top of the list and many of the others things mentioned in posts above would make my list if I was to put one together.


No one knows what tomorrow will bring live today as if it where your last and enjoy every minute even with all that having crohn's, ostomy bless's us with.
01-16-2014, 01:50 AM   #20
AJC - Australia
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This is quite depressing….as is having crohns.

1) People not accepting the changes you make in your life….people not appreciating how hard your life is living with this 'invisible disease'….you suffer in silence.

2) Your dreams are shattered - physically you have to let go of any physical dreams you had of physical prowess, sporting and otherwise.

3) The fear of the future - you know more bad shit is going to happen and you just pray for the best.
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01-17-2014, 01:23 AM   #21
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1. Ruined career dreams. I wanted to join the Army.
2. Remicade makes me prone to all kinds of skin issues and prone to colds.
3. Having to explain to people what Crohn's is. This gets old quick and I usually dont even bother.

I think about number one all the time and it depresses me
01-24-2014, 11:21 PM   #22
Sunione
 
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Well it looks like we are all pretty much having the same reactions to this disease coming into our lives.

1) Having to give up what we had or what we planned to do; losing friends and having loved ones tire of our condition, resulting in us being socially isolated
2) Never being able to feel that others understand what we go thru and them consequently thinking that there are 'other reasons' for our behavior, such as a mental illness of some kind.
3) Missing out on living life without constantly fearing what our bodies might be planning for us today, tomorrow or next year.

I would also add dealing with cold hearted health care professionals. They make me feel like I am a sick cow.

Think that sums it up? Yes, it is depressing to discuss this but how else can we narrow in on what we want to change?

Suni
01-24-2014, 11:31 PM   #23
ronroush7
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1.Retiring early because of healing slowly from surgery.
2. Losing control of bodily functions.
3. The time it takes away from duties. Slowing others down.

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01-24-2014, 11:32 PM   #24
ronroush7
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This is revised from an earlier post.

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01-24-2014, 11:38 PM   #25
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"1) Having to give up what we had or what we planned to do; losing friends and having loved ones tire of our condition, resulting in us being socially isolated
2) Never being able to feel that others understand what we go thru and them consequently thinking that there are 'other reasons' for our behavior, such as a mental illness of some kind.
3) Missing out on living life without constantly fearing what our bodies might be planning for us today, tomorrow or next year."

That is a very well thought out list Sunione and spot on.
01-28-2014, 02:22 AM   #26
Sunione
 
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I am thinking about writing something concise that we could all circulate on social media cites, the purpose being to further understanding by those who are blessed with good health but seldom any empathy.
Your thoughts?
Suni
02-01-2014, 10:31 PM   #27
Donjh
 
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If you feel like it would do any good. I think most people are so wrapped up with what they have to deal with day to day it might not be very effective. With all the TV commercials for Humira, crohn's more people are becoming more aware of the disease but I'm not sure how much people not effected by crohn's themselves want to know about crohn's.

My Doctors and interns at Shands tell me crohn's is more insidious than cancer or any other disease they deal with. I think that is the worse part of this disease.

I think you could do a very good job writing it up from your posts I've read, I say go for it.
02-01-2014, 11:31 PM   #28
PVail
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1. The total lack of understanding my doctor has had over the last four years that something was actually wrong.
2. The fact that IBS is actually used as an excuse for a diagnosis when its obviously not.
3. Crohns is very clever as it wears you down mentally as well as physically hiding behind other symptoms. Taking years to be diagnosed and even then longer to treat.

Just a small rant, but you did ask

Peter
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02-02-2014, 12:53 AM   #29
Sunione
 
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Hi Donjh

You wrote: " I think most people are so wrapped up with what they have to deal with day to day it might not be very effective."

So true. It does take a long time to effective any change in the way people perceive something that they are not experiencing themselves. In recent years many widely held opinions have been changed for the better (particularly in areas were ignorance has fed prejudice).

Through the use of some very smart 'marketing' strategies I believe we could as a group, improve the image of Crohn's being just about frequent bathroom trips. I have no real knowledge of such techniques, except as being on the receiving end of attempts to change my opinions. But I do believe that repetition is the key. Maybe there are Crohnies here that work in a related field (public relations or marketing) and could offer advice?

I am going to start a new thread to encourage more people here to contribute ideas on what we want to become known about living with Crohn's so that we can begin to feel less frustration in our personal relationships. Another goal might be to help caregivers, spouses, family and children of Crohnies feel that they have the information they need on how to be more compassionate.

Recent statistics suggest that Crohn's and UC are on a steep increase. I don't think the public is prepared.......
Suni
02-02-2014, 01:08 AM   #30
Sunione
 
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1. The total lack of understanding my doctor has had over the last four years that something was actually wrong.
2. The fact that IBS is actually used as an excuse for a diagnosis when its obviously not.
3. Crohns is very clever as it wears you down mentally as well as physically hiding behind other symptoms. Taking years to be diagnosed and even then longer to treat.

Just a small rant, but you did ask

Peter
Hi Peter,
Feel free to rant! We all are in the same boat. I doubt that anyone on this forum could tell a TRUE personal story titled: "The Miracle of Modern Medicine and Crohn's Disease". It is astounding to read how often we get, not a quick diagnosis, but rather an eye-rolling dismissal from yet another clueless doctor. I sometimes want to pull my hair out and throw a fit.......but then that would just prove them right, that we are all in a conspiracy to drive them nuts. Complete disconnect?
Suni
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