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Ulcerative Colitis
Is U.C. Always like this?
Is life this hard for someone with UC? - 50.0% - 2 votes
Will it ever get easier? - 50.0% - 2 votes
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Posted 10/23/2011 7:56 PM (GMT 0)
Hello I have a question. I have been seeing a guy with ulcerative colitis and I have become so frustrated. We plan to go on a date or go to some event and he always tells me a few hours before that he feels bad and can't go. He is never in remission. He is moving out of his parents house...VERY slowly. He has his own house that he isnt even living in because he feels too bad to drive there. All he does is sleep and say he feels bad. He can't even finish his classes at college because he misses too many days,and he really doesn't have a job. I myself have a chronic disease that gives me pain daily but I live my life to the fullest. I won't let it keep me from accomplishing my dreams. I have not mentioned my frustration to him yet. But I'm growing SO frustrated. We've talked about marriage but how am I suppose to have a husband that can't provide. I don't know what to do. Am I being too insensitive? There HAS too be other option. Is u.c. always like this?
Posted 10/23/2011 8:20 PM (GMT 0)
Personally, when you're in the middle of a flare up (which causes severe pain/bathroom trips) its really hard to get the courage to even take a 20min drive anywhere. Add on the concept of dating or relationships and personally I dont know what I would do. He's probably doing his best to get better, but with this disease you can lose alot of sleep, alot of energy and its a day-to-day effort to relieve yourself of possible embarrassment for what used to be mindless activities. The key is getting the disease under control, and when this happens he'll be ready to go on a date. I understand love doesnt take a break for anything, but because you guys are dating right now, he's probably going through a tough time trying to be with you but at the same time thinking about what he would say to you if his condition ever got in the way. I understand you have a condition too, and thats great you dont let it define your life, and keep moving forward...

I believe attitude is the single most important thing that can change the outlook of any disease or condition, medicine is second in my book. Try talking to him, but go easy on him as you're the one with the ability to move about and make things happen, and i'm sure he wants to! But... can't at the moment.
Posted 10/23/2011 8:54 PM (GMT 0)
Having pain sucks, but crapping your pants in public is humiliating.

That said, w/o knowing what meds he is currently using and what meds he has tried, it's hard to say much about whether or not UC is always "like this." I'm not willing to let UC control my life, so if I get to the point where meds have failed and I'm flaring, the colon will have to go.
Posted 10/23/2011 8:55 PM (GMT 0)
I am doing good. I billed 91 hours work last week. But a RELATIONSHIP ? That sounds harder because you have to keep the other person happy, deal with their moods and whims and be ready for social functions and have little control at times. The never ending struggle for control in the relationship I have no patience for any longer.

I have recognized a clear distinction between heavy stress where I can take action and stress where I have no control. The no-control stress effects my UC. Ex-wife ? No control and I cannot get her to help with parenting and making normal decisions about schools etc. Very stressful and feel it in gut. Work has been fine at all hours UNTIL I had a critical system that was mysteriously restarting itself with nothing in any logs at any level for weeks. It felt like the entire company was backing up behind this problem that I could not do anything about. It started having that UC effect on me.

So a relationship I am leary about because the gals since divorce wanted me up for a dinner date and twice a week was not enough then there was the up till 5:00 am performance stuff and it was just ongoing. I think a relationship where the gal wanted to help me more than she wanted me to help her live out utopia would be possible. I am thinking of buying a house twice this size and a gal would be welcome IF she brought something to the table like organization, meal planning, part of a high mortgage payment - anything but more work for me. If its just me making her happy I will pass at this age.
Posted 10/23/2011 10:06 PM (GMT 0)
Just because you have a chronic disease does not mean you can understand what it is like to have severe UC. Not all UC is the same, some people can function well, have a job, have a family, act normal. But for someone like your friend just getting through the day can be overwhelming.

Personally I think you should find someone else because 2 people with chronic diseases may be too much. You wonder if he can "provide", there is no guarantee of that.

Are you being too insensitive? In a word, yes. Only someone who has walked in his shoes can really understand what severe UC is like. So if you can't understand and can't accept him as he is without expecting him to be different then please for his sake and yours keep him as a friend but not a boyfriend. He needs support not frustration.

I am so fortunate to have a supportive, loving spouse and wish that every UC'er has someone too.
Posted 10/23/2011 10:50 PM (GMT 0)
Thank you for getting back with me.          I understand that I don't know what he's going through because I don't have U.C. just as he does'nt understand mine.    I am supportive and do as much as I can. He has started a diet about two days ago,he's not too happy about giving up some food. I've tried to comfort him since I myself have had to give up some food permanently. I want to ask about his diet but usually don't. I only know the very small details,the rest I have found out through the internet. I see him once a month.    He is on chemo and steroids.  He has recently become VERY skinny.  When I do see him its usually ends up with him sleeping on my shoulder. I hate to see him in such pain,a 'remission' has just seemed like every other day. His medicines fix something then something else goes wrong. Is that what remission is like? He really want talk to anyone about it,I don't press.I'm sorry if I made anoyone upset.  I'm trying to get a better understanding of U.C.  I had never known anyone with U.C. Until I met him so oviously my knowledge for UC is very little.       I had a rough week myself and my first post was after a VERY bad day so probably came across a little more coldhearted.   I am a very patient person and want to help him.   What would help him feel able to go somewhere twice a week?      Thank you again to everyone taking the time to answer,I was'nt sure where else I could go to learn.
Posted 10/23/2011 11:25 PM (GMT 0)
OK, it did sound cold-hearted but now explained. Thing is, besides having UC (which is huge) a person's personality influences how they handle life with UC. You can't fix it. Heck most doctors just keep trying different drugs, blindly sometimes it seems.

I won't speak for him but it's really hard to talk about something so personal as losing control of your bowels, humiliating. Imagine how that makes a guy feel talking to his girlfriend, not manly. I don't like going into details and I'm female and we LOVE to discuss bodily functions (OK maybe not me).

What came across in your 1st post was frustration that he cancels dates you've been looking forward to. That will happen with UC and there's no way to know when or if that will change in the future. I'm sure he's as depressed about it as you are frustrated. There's no cure although some people do achieve remission, through drugs or surgery (colon removal) or other methods. But that is up to him. You cannot make him better. You can just be a friend and support him.

One great thing you can do is point him to this forum. He doesn't need to post, just read, read, read. Lots of good information. If he found one thing that made his life just a little better that would be great. But it's got to be his idea.
Posted 10/24/2011 1:46 AM (GMT 0)
Stop talking about marriage at this point.

Get him to come here for information and sharing.

I find it unsettling that he doesn't talk about it....that should give you an idea about what marriage will be like.

Sounds as though your life is good regarding your health issues, maybe finding a match to that enthusiasm is a good thing. if you're having doubts.

He could have his colon removed if he's not having any improvement....so that he can have a better quality of life and control.

you don't sound cold....you sound honest. It's not YOUR responsibility to find out the info about his disease to help him.  He should be doing that.  You should find out for yourself.   It would be different if you were already married, but you're not.

And if you do want to eventually get married..to to counselling first, and here's my strongest suggestion. Don't have any kids.

q

Posted 10/24/2011 1:57 AM (GMT 0)
I apologize if I sound blunt but the only way I see things working out is if he goes for surgery.
Otherwise what you experience now is what you can expect, and it does not sound you can deal with that.
I do not judge you, or anybody that prefers to find a healthy couple up front.
I do judge those that are already in a strong relationship and walk away when their partners get UC,
pulling a page from Newt Gingrinch.
Posted 10/24/2011 2:51 AM (GMT 0)
Surgery should only be an absolute last resort for anyone dealing with this unless you have suffered and havent seen any improvement, and i mean any at all. Its different if you have a 7 year old daughter with UC who has been suffering for a while, but as an adult we know our limits. With that said, you can still pursue an active, healthy and happy relationship while having this disease or any other for that matter. It's fairly obvious there is something inconsistent in his lifestyle thats making him go back and forth from flares/remission periods, but we will never know unless he comes on here or decides to talk things through with you. I disagree with anyone who says that you should reconsider kids because of the situation you are both in, thats ridiculous. Quincy, surely you out of anyone in this forum who's suffered long and hard from this disease would have a little more positive outlook...
Posted 10/24/2011 2:59 AM (GMT 0)
I have'nt asked about his UC. I wanted to get on a forum and learn some information about UC. then try to find away to suggest it. Thank you Quincy for your help. What is remission like? Is it less painful?
Posted 10/24/2011 5:37 AM (GMT 0)
Stereo..as a 21 year old, I would have said the same thing.

you seem in the habit to state I'm not positive...stop looking only for those aspects in me, because you'll always find them.  Besides..perpetual positivity can equate to denial.... rolleyes




Amiens....if your boyfriend is open to suggestions, suggest for him to come here. Please. Maybe just bluntly ask for him to explain his fears, etc so that you can work on it together. If he agrees to come here, maybe ask the mods to delete this thread so that he won't see it...???

He is on prednisone... that can cause a severe exacerbation of emotional issues such as depression, anger, agitation...etc.

I never asked how long he's had UC, how long have you two been together, and how long has he been on pred?

He might be in the works for another opinion by another doctor who might be able to help with different meds, etc.

I can only imagine his disappoitment with his life on hold...maybe offer suggestions as to what his school options could be once he feels better.

Are his parents supportive to him?

Maybe if he's so weak, has he had lots of blood tests to make sure he's not deficient in something?

I truly hope he feels better....but remember to look after yourself as well. 

Do you mind to share what chronic disease you have?

q

Posted 10/24/2011 7:36 AM (GMT 0)
Ever saw a sentence "People with UC often do not tell others they have...", at first, I didn't know why as I told my friends what UC was. Now, I understand this sentence and start not to tell anyone. Many people 'commented' on me:"O, you are not positive, you should be more optimistic, UC is a piece of cake, and so on." I got tired of saying anything.
Posted 10/24/2011 12:35 PM (GMT 0)
It has been a year now since he was diagnosed. He has extremely supportive parents. He changed doctors a couple of days ago and had blood work done results aren't back yet. I am a type 1 diabetic with hypoglycemia unaware so I can't feel my low blood sugar. After having a seizure due to not be aware of my blood sugar and the want to be able to live alone I purchased a diabetic alert dog which is a angel sent from heaven. I didn't have him I probably wouldn't have woken up one night. Also since I have a service dog and am very active in that world. I know that service dogs were being looked into for UC how is that going?
Posted 10/24/2011 2:06 PM (GMT 0)

quincy said...
Stereo..as a 21 year old, I would have said the same thing.

you seem in the habit to state I'm not positive...stop looking only for those aspects in me, because you'll always find them. Besides..perpetual positivity can equate to denial.... [img]/community/emoticons/rolleyes.gif[/img]



q

Sorry Q, thats bullcrap I'm not going to accept that. I choose a positive route because I'm keen on not letting this disease put me in denial with myself and my fears and it annoys the crap out of me how someone like you who has suffered for years would actually suggest the idea of "not having kids". That's denial of possibility and quality of living a happy life. But i'll leave it alone, i dont know you personally -I can only base what I read on here.
Posted 10/24/2011 2:09 PM (GMT 0)
Amiens, perhaps I can give you a little perspective. I have both chronic pain and UC. For the first six years after my diagnosis in 2000, I was in a horrible flare. I was in the bathroom every hour, anemic from bleeding, chronically exhausted and in pain. I dutifully tried every medication, diet and supplement that was recommended, to no avail. For those five years I went to work, then came home and rested so I could go back to work the next day. That was my life. My wonderful husband did everything else.

In 2006 I was started on a new drug that put me into remission almost immediately. I've had a few brief mild blips since then that were easily controlled with rectal meds for a couple of weeks, but otherwise am pretty much normal as far as my colon. Even with my moderate to severe chronic pain, I live a normal life. I'm able to push through pain, but nothing made me able to push through being too weak to pick up my foot to take the next step.

Please realize that even if your boyfriend does get into remission, it likely won't last forever. He will have flares from time to time, hopefully shorter and less severe, but there's no guarantee of that. I also would recommend that you slow things down in the relationship and think about whether you can live with this constant uncertainty and support him through it. If that isn't going to work, then better to break off sooner rather than later.

You're not a bad person either way. You're just doing what you believe will be best for both of you. Good luck.
Posted 10/24/2011 2:15 PM (GMT 0)

yeah, I guess the service dog could fetch toilet paper. Lets forget about drug research, studies of gut flora and diet, new surgical techniques, potential gene therapies ... lets focus on training service dogs to do some vaguely unspecified thing.

One year? Well, he could get into remission. Sounds like he has only obtained limited management so far. You also can't even begin to try all the usual drugs and therapies in just one year. ... not to mention treatment of severe anemia, which is secondary to all the UC related bleeding. I would also suggest that one year of poorly managed and severe symptoms is not long enough to psychologically process having UC. With remission, or surgury, and some stages of grief, a positive attitude and a "taking control" of ones life could come to the forefront - but not in one year with no remission and severe symptoms.

But any remission could last a few months, few years, or a few decades. There could be other severe flares and possibly surgeries. Without finishing college and/or if future insurance excludes aspects of UC care as "pre-existing", there could be huge medical debt or even full disability in the future. The diagnosis of UC could become a diagnosis of Crohn Colitis, and even surgury would not be a cure. .... and "chemo"? ... whats that for? Not UC. Is there cancer too? Just reading threads here, you can plainly see that some manage to function and some are sliding downhill. Not everybody responds to the same things, and some folks do not respond to any treatments.

I think you already know you want to exit this relationship. Just the questions you do, and do not, ask say a lot. That's fine. It is hard to sign up for a load of future grief. Sounds like you weren't that far along when this hit. You are not obliged to be a martyr. Good intentions and positive attitudes are not a substitute for sensitivity and empathy. Like someone said above, maybe try to be just a friend - and don't even do that if you can't avoid making judgements about not trying hard enough, or not being positive enough, or not overcoming disease enough.

Posted 10/24/2011 2:32 PM (GMT 0)
stereo.....that's OK if you don't like what my opinion is. You have your own to share. Go for it. But keep in mind who you're directing your anger towards in such a positive way.?.

 Suggesting someone not have kids doesn't mean they won't.   Free will is what we all have.

Marriage and having kids is serious business, I look at it from both difficulties presented.

If it pleases you more...I could have added....for a long while until all gets sorted out and you're BOTH stable in your relationship and health.

I'm sure this will get deleted anyway since it's hijacked the thread.
q

Posted 10/24/2011 3:10 PM (GMT 0)
I know that remission isn't forever. And UC isn't curable. I don't want to "exit the relationship" I do want for him to accept it some. I understand he hasn't and I didnt either when I was diagnosed. So I understand. I am positive in any way I can be and encourage him to set small goals. Baby steps. I may sound like I am sick of dealing with UC. I'm not it's more wondering if I'm gonna be the one who gets two jobs to support. I don't mention my bad diabetes days to him(I don't know if anyone knows anything about diabetes but believe me it can suck too) stress affects me so I'm sure it does for him too. IF he actually got on a diet willingly and stuck to it it would help. I know he doesn't have cancer because that was my first question when he told me he was placed on it. He just told me it was for his UC.
Posted 10/24/2011 4:45 PM (GMT 0)
Um, could I also just mention that not having children does not preclude having a happy life...? Not everyone has to have children to be happy.
Posted 10/25/2011 1:13 PM (GMT 0)
UC is a very unpredictable disease. Some days your boyfriend might feel great and on top of the world, other days he won't be able to do much of anything (especially if he's going to the bathroom frequently and is bleeding). If he has never been in remission, then it's reasonable to assume he really doesn't have the energy to go out. Add to that the fear of embarrassing himself in public and the guilt he most likely has from not being able to go out with you in the first place and I'd say he's probably quite miserable. So here's my suggestion - Why not visit him and have a "date night" in the comfort of his/your place? That might make you both feel better. You could cook him a nice healthy, low-carb meal (diets low in carbs, especially when flaring, are usually really good for people with UC) and order a movie on netflix or something. There are plenty of things you can do together while he is flaring, you just have to make some effort. I completely understand feeling frustrated but try and remember that he can't help it and he's not doing this to make you feel bad. If you want to stay with him, you will have to adjust and adapt to some things when he is flaring. Best thing you can do is just try and be supportive and help him feel better - you'd be surprised at how far that goes when you have UC.

Also, if he hasn't already, he needs to go see a doctor. First step is getting the inflammation under control.
Posted 10/25/2011 1:18 PM (GMT 0)
I think that having (or not having) children is a personal decision - some people want them, some people don't. I think it's not for any of us to suggest whether others should or should not have children, especially on an internet forum.
Posted 10/25/2011 4:32 PM (GMT 0)
I can see your point, fruitgirl....but opinions are opinions no matter where. I will change my wording, should it come up again to make it less offensive, but it will strike a cord with anyone who already has children....to which it's not directed to.

q
Posted 10/25/2011 4:34 PM (GMT 0)
Amiens....never heard of UC support dogs. Wonder why they would be necessary....

Do you know what other meds your boyfriend has been on in the past?

q
Posted 10/25/2011 4:44 PM (GMT 0)
Actually it struck a cord with me and I don't even have (or want) children. I think sometimes your opinions come off a little too negative at times and this is really not the place for negativity. We're all just trying to feel better. It's important that we're careful in what we say so that we come off as supportive and optimistic about the future, not the opposite.
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