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Anyone else have bigtime opposition from friends and family w/ your UC?

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Ulcerative Colitis
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Posted 4/23/2010 2:59 PM (GMT 0)
My personal favorite..."Can't you just take pepto?" Um, no.

Also I have a friend who insists raw milk is the cure to everything, ever.

And while my boyfriend is mostly supported, it gets kinda...heated if I bring up the prospect of surgery. He absolutely cannot deal with the idea of me having surgery unless I have tried literally every treatment out there, mainstream or alternative. To him it's last resort only.

And coworkers-I was working during a flare and one of the other girls flipped out on me for leaving my register to go to the bathroom. A bit over a month later she gets preggers and expects everyone to cater to her (constant bathroom trips, customer complaints about her being rude, etc). And another one kept asking if I was tired because I was anemic, and told me I should eat better while stuffing her face with potato chips.

songlady-Same with my relatives. During a flare insoluble fiber is a no, and in remission I can eat most things, but no matter how many time I explain that diet isn't the issue and it just helps my symptoms, they don't get it. And it took going to a scope with me and talking for my GI for my dad to stop asking, "Well was it something you ate?"
Posted 4/23/2010 3:19 PM (GMT 0)
The other night my boyfriend was giving me the whole "you should exercise more, that will help you sleep" bit. I have explained 10x that I am on prednisone and it causes insomnia and exercise has nothing to do with anything. Is it that he doesn't listen, that he doesn't believe me or maybe he doesn't get it?? Very fristrating.

A few weeks ago I went to an eye doctor and I had to discuss my colitis because of the drugs listed on my forms. The doctor actually said to me, "at least this is curable, there are people out there with illnesses that can not be cured". I was kind of angry. Isn't she supposed to be a doctor? Don't doctors know this is not curable? I hate when people assume everything is so simple.

Posted 4/23/2010 5:09 PM (GMT 0)
Yes. Colitis is really horrible to have--losing massive amounts of blood, having to run to the toilet... So it was an insensitive comment, not unless your eye doctor is also suffering from UC. However, I am grateful I don't have Chron's. At least UC is curable with surgery.
Posted 4/23/2010 7:37 PM (GMT 0)
nssg...did you not ask him how it could be cured? maybe he was meaning surgery (as we see as the only "cure").

q
Posted 4/24/2010 5:55 AM (GMT 0)
Jeez! All this sounds like echos of what I've been hearing all the time. Some of the comments you all have gotten seem even worse than what I've heard.

My heart really goes out to you folks who mentioned that your significant others are not fully understanding. That must be TONS more difficult than other people not understanding.

Yeah I'd have to say the worst opposition I'm getting these days is my in-laws. It's really frustrating 'cause I really want to have a good relationship with them. My wife and I have only been married for about 2 and a half years. about a year into my marriage, the colitis hit. So they never really got to know the old me. They never tried, but still... I have always worked hard, worked long hours, exercised a lot, eaten well... They think I'm lazy, I'm exaggerating my symptoms 'cause I'm lazy and don't want to work. They think I'm just eating wrong, not working exercising, etc. They really hate me now.

Her parents both grew up on farms in big families. You don't talk about pain, etc in their household, so they see me as weak. "Work is the cure for being sick!" My wife's sister (their daughter) had severe depression, but they refused to admit that it existed. To them it was just whining, a lack of trying to get into a better mood. Ignorance at it's best.

It's a shame. We can get along if we stay away from the subject of health. And we always have gotten along, and stay away from the subject... 'til I got sick...
Posted 4/24/2010 8:13 PM (GMT 0)

notsosicklygirl said...

A few weeks ago I went to an eye doctor and I had to discuss my colitis because of the drugs listed on my forms. The doctor actually said to me, "at least this is curable, there are people out there with illnesses that can not be cured". I was kind of angry. Isn't she supposed to be a doctor? Don't doctors know this is not curable? I hate when people assume everything is so simple.

Actually most doctors not specializing in the field have no clue.  My GP has enough of a clue to have sent me to a GI in the first place and offer his condolences when I had my follow up with him.  The eye doctor really will have no clue. 

When I did my annual physical for work I got to discuss more with that Doc.  He had some sort of  APP on his phone and looked up my drugs because he was not familiar with them, and talked with me about the condition.  He is an older doc and was well aware of the crohns/Uc problems.

 

Posted 4/25/2010 2:50 AM (GMT 0)
I'm overweight(The pred for 6 months didn't help 50lbs later) and I get if you would change your diet, if you would lose weight, if you would eat more fruits and veggies.  I eat a well balanced diet and I get so irritated.  I'm fatigued all the time I sleep like 12 hours a day and I get.  If you would lose weight you wouldn't be so tired.  It is from your extra weight.  Maybe it is but I've never felt like this.  My joints hurt and I'm exhausted.  I think they are just trying to help and they don't understand.  Oh my favorite is when I would have accidents in my pants or needed a bathroom right away my brother said to me. Just hold it. shocked   If it was that easy I would.  I just think they don't know what it is and how to deal with it.  I also agree people see us from the outside and think we are fine.  UC is a very difficult thing to live with and most of us will deal with it until we are gone.  Try not to get to upset.  I also won't talk about my health to my in-laws because they say the stupidest stuff.  I've learned to just shut my mouth when they ask because they will just say something that will get me mad. 
Posted 4/25/2010 2:59 AM (GMT 0)

mdf34 said...

When I did my annual physical for work I got to discuss more with that Doc. He had some sort of APP on his phone and looked up my drugs because he was not familiar with them, and talked with me about the condition. He is an older doc and was well aware of the crohns/Uc problems.

When I went to see my GP because my heart rate dropped below 50 beats per minute, she asked me what medications I was taking. I told her lexapro; so she looked up the side effects. I was very impressed. There are so many medicines. I don't think we should expect our doctors to know about all of them. I liked the fact that her ego did not get in the way, that she could admit that she didn't know, and look it up.
Posted 4/25/2010 3:07 AM (GMT 0)
No, she didn't mean surgery as the cure. She meant that this wasn't a life-time condition. I guess she thought I would be "cured" after treatment. I told her that this does not go away. She didn't seem to get it, I guess she doesn't have much knowledge of UC.
Posted 4/25/2010 6:07 AM (GMT 0)
WIMOMOFTHREE, I get a similar reaction. The prednisone has caused some weight gain and people assume I just don't eat right. Very frustrating. Thanks for the advice, I am definitely going to start doing everything all of you have suggested.
Posted 4/25/2010 9:02 PM (GMT 0)
ARG!! This morning i just got a sit down discussion from my family saying that "I'm just not doing enough" for my colitis.

I've been diagnosed with colitis for about a year and a half. I am in the middle of a flare up, so I was been at home all yesterday. I spent a total of about 6 hours researching pro-biotics, the specific carb diet, pros and cons to j-pouch vs ileostomy, and looking up surgeons who can do a colectemy. I usually research at least 2 hrs on colitis every day.

They said, if I were serious about getting rid of this I would have gotten the colectemy already. I have just been put on a new med, and I've been waiting to see it's effects, 2 weeks ago was the first remicade infusion that hasn't given results; so I've just recently been giving serious thought to the colectemy.

It was just last week that I got a discussion that I should be trying more with my diet to fix the colitis, now one week later I should have gotten a colectemy ages ago!

Hearing that "I'm not doing enough" makes me furious!! It was all brought on cause I started today with a smile! "why are you acting so happy, I thought you had a long night on the toilet?" they asked. "it seems like youe just too content with being sick like this"

So I should look miserable all the time? Be in a bad mood? When I am in a bad mood, I'm told I should "cheer up, many people have it worse"

Sorry just venting. I hate it when people tell me that stuff, especially family members
Posted 4/25/2010 9:19 PM (GMT 0)
Wow NMan
With a family like that who needs enemies?
It sounds like you are living at home so parents think they get to tell you what to do cause they're paying the bills. That sucks.
It's your life under the knife. You get to make THAT decision.

I wish you had more support for making your own decision based on your research and symptoms.
And it is so unfortunate that you and others have gotten this disease at such a young age. That really sucks.
This is the place to vent.

Just for fun why don't you mention that there is some credible research that this is a genetically inherited disease. And which one of them might have been the carrier for that gene? I know-rude-but so are they.
Posted 4/25/2010 9:46 PM (GMT 0)
Actually I'm married, and I'm older. I actually invited some family members to live with me and my wife due to financial tough times. So that's sort of the dynamic there. It's stupid oh well, they have now promised to just "keep their mouths shut," which is an exaggeration of my request for them to let me come to terms with what I'll need to do in my own time in my own way; done in an effort to make me feel guilty about making the request.

Juvinile. Oh well.

Thanks all. I know they mean well, they just have a forceful way of pushing what they think is best on me. And what they think is best changes every week or two. But they push it like it's the obvious solution that they've known and that about and I've been avoiding for ages.
Posted 4/25/2010 10:06 PM (GMT 0)
No, I don't have any problems with my family/friends or anyone about UC.  Some don't really understand but I am nearly 70 so I don't get any flack or comments.. just sympathy.  One thing I am really happy about with this is that I did not have it when young.  I feel so bad for all your younger people who have to deal with the disease and family/friend!  Mostly, if they don't understand I just say an autoimmune disease something like Crohns - most have heard of that and know it is serious.  Most know that I don't do mornings - even all my doctors, etc. 

ElaineNY

Posted 4/25/2010 10:23 PM (GMT 0)
This is why I don't tell anyone--I just leave it at "autoimmune disease" if they ask. And when I was flaring, I was just a hermit and my friends weren't nice enough to even ask why I was MIA.
However, my parents and brother have given me some hard times. I had to beg my parents to let me quit a summer job b/c I was flaring so bad, and then they kept bugging me to "find a few hours a week of work." I even had to take the following semester off from school because I was still flaring (and was actually scheduled for surgery), and they were all like "why can't you get a job?" "How can you just sit there?" etc. when I was feeling like absolute crap. I'd give anything to have a supportive significant other/spouse.

NMan, Remicade can take up to 5 infusions to work--don't give up hope!
Posted 4/25/2010 10:27 PM (GMT 0)
My situation is very similar to Elaine's. I didn't get UP until I was 52 and now I am almost 64. However, my condition has worsened over the years and I seem to be flaring much more frequently since my last hospitalization in May of 08.
I count my blessings as I have a very supportive family. Both my daughters are grown. My oldest has her own home and she is the mother of our two grandchildren. Our youngest is single and still lives at home. She and my husband are my rocks. My husband of almost 41 yrs has been such a great help. When I have bad days he won't let me lift a finger. My youngest daughter will do mostly anything for me too. My oldest daughter, although very supportive of me, has her own problems. My friends have been phenomenal!! We have several out of state friends whom we met while camping over twenty years ago and there isn't a week that goes by that they don't phone to inquire how I am feeling. I feel very blessed indeed and thank GOD every day.
Posted 4/26/2010 1:10 AM (GMT 0)
I wouldn't give up on the remicade so fast.  I was told at my doctor's appointment on Friday that it takes about 12 weeks to reach it's potential.  I'm sorry about your family.  I wouldn't even talk to them about it or talk about your UC in front of them.  Good luck I hope the remi works for you.
Posted 4/26/2010 3:55 AM (GMT 0)
Actually I've been on the remicade for over a year. The doc was quick to put me on it when he saw how little the other meds did for me. The remicade has worked very very well for me, but the last couple of infusions have not been working their magic quite as well. The most recent one did nearly nothing. That's why I'm looking into the prospect of surgery.

Plus all the side effect of the meds are really wearing on me.

Don't worry, I wont rush into the colectemy, I am being super careful about these descisions.
Posted 4/26/2010 4:21 AM (GMT 0)
hmmmm, and these are people who live with you? not your wife specifically?

I can't post the words I'd use if someone judged my moods and illness being perceived by them.

Actually, my tolerence is pretty much 0 for that kind of stuff.....I can't remember even once anyone saying such things to me.


Just remember no one can make you feel anything...so they say it because they can.

What does your wife respond to these "accusations"? and are the relatives hers or yours?

quincy
Posted 4/26/2010 4:47 AM (GMT 0)
No my wife is smart and great. The people from this morning were from my family. Mostly my mother.

My wife really hates the accusations. She's pretty softspoken, but she hates it. I'm not softspoken at all. I pretty much let them have it. I didn't let them tell me that stuff without giving them a piece of my mind.

But my wife's side of the family is much worse. My family cares about me, but they are pushy and they don't understand health stuff super well. Her side just doesn't like me. They think I'm lazy and using sickness to get out of work. Although I still work, I have my job still...

So yeah, I don't really tolerate that stuff, but I still get big does of it nonetheless...

I guess what bugs me most is what they think of me. I've always been proud of my work ethic and they think I'm a slob who eats badly and doesn't want to work.
Posted 4/26/2010 7:30 AM (GMT 0)
HAHAHAHAHA, eating badly...............that seems like the only food that doesn't hurt me.  I am actually starting to feel guilty about eating hardly any veggies at all for the last 8 months.

I actually had to tell my wife to quit worrying about me and let me go about my business.  Up to and including dinner.  A can of soup and crackers or a grilled cheese (I seem to tolerate processed cheese slices, Kraft, much better than "raw" cheese) would upset her, you're not getting enough to eat, that's all you want, I have leftovers in the fridge, etc.  Once I told her it has to be this way, at least until I get into remission she settled down.  My in-laws just came down for a visit.  I made everyone promise to go without me if I got up having an episode on the days we had plans.  After teasing me, oh, we won't be that hard on you, or cause you that much stress, we had a long talk about the condition.  My mom is the worst.  She still tries to insist that pepto or milk will coat my stomach and help me out.  She had to ask around "her" circle of friends before she could believe how bad it is.

Anyways, I am saying I sympathize and empathize with you.  Leave the literature around or refer them to the internet and let them do their own research so they can find the answers on their own and you cannot "influence" them. 

And, OMG, tell them to contemplate having a major part of their anatomy removed.  I get that many sufferers here have had nothing but good to say about the surgery, but hell, it is not a lightly considered decision.

Posted 4/27/2010 1:04 AM (GMT 0)
Ha ha! Get them "out of my colon" That is hilarious! It had me rolling!
Posted 4/27/2010 4:05 PM (GMT 0)
I come from a family that seemed to coin the phrase "bum stomach". My Father still to this day says, "what did you eat", thinking that it must be my diet. I've explained it a couple a hundred times but...
Posted 4/27/2010 6:13 PM (GMT 0)
I guess it's easier for me. I don't have this disease due to genetics. I did abuse antibiotics, and I was eating very poorly (only chocolate and beverages containing HFCS) after my divorce. I tell people about the antibiotics and poor diet, and they agree with me that that is the reason I now get flares. I tell them that I'm now taking probiotics and watching my diet, and they agree with me that that should help me. I guess it's harder for those who haven't abused antibiotics and do eat right. So I guess that if I still got flares even if I hadn't abused antibiotics or eaten poorly, I would tell others that UC is inherited, after all it is, which is why I always say I have colitis and not UC despite the fact I've been diagnosed with UC.
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