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Ulcerative Colitis
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Posted 5/1/2011 3:57 PM (GMT 0)
UC has taken enough from me.. I won't let it take away from my relationship.

Sidebar: In a relationship for 1.5 years, my UC has never been an issue until now (flaring since January). Now I frequently have to make my boyfriend stop the car while I run to any restroom I pass, we can't really do stuff outside anymore, even going to the movies is hard for me. Also, UC must be at the top of the "so not-sexy" list of diseases, and that is a problem for me - I hate that this affects my "romantic life." Another big thing is that while I'm naturally anxious and neurotic, I get 10x more so during a flare.

This is mostly just an issue when we are in transit, like when we're driving somewhere, because that's when I get really nervous. I have to concentrate really hard, breathing slowly, keeping calm, calculating the distance to the next restroom, asking myself every 6 seconds whether I have to stop at the next restroom.. and that's when certain behaviors really annoy me, like singing loudly, tapping, taking unexpected routes or announcing last-minute errands to be run. It really throws me off and makes the car rides even more torturous. Of course, I know how that sounds (like I'm a lunatic, to anyone who doesn't understand the disease) and really don't want to make a big deal out of it or make him feel bad, or make UC an even bigger issue in our relationship.

How do you guys make sure your UC doesn't become between you and your mate?
Posted 5/1/2011 4:36 PM (GMT 0)
One thing I did is ask always to be in the drivers seat, it made me feel more in control of pulling over to a bathroom when needed. It also helped my DH because it causes stress to your mate when you are on edge and making sudden demands to pull over.

Immodium and Bentyl also helped sometimes, not always.

Another idea and one that is more drastic but I did it several years ago when things were at their absolute worst: wear an adult diaper. Yes you will feel like you've given in at first but it removed the absolute stomach and butt-clenching stress when in situations like a long car ride or say an important party or dinner out. It actually calmed me down and gave me confidence and guess what, I never ever needed it (well mentally I did).

My worst UC days were when car rides became torture or even talking on the telephone in the morning.
I hope you can find a way to remission and not let UC symptoms dominate your life.

For whatever reason our romantic life was never affected by UC but morning sex is a thing of the past lol.
I think communication between a couple when one has UC is super-important because the other person can't tell how you're feeling by just looking. Let him know if your stomach is upset or feeling good, don't make him guess.
Posted 5/1/2011 9:26 PM (GMT 0)
One important thing to realize is that as much as it is traumatic for you, i think it is also a lot to deal with for your significant other. So, I think it helps to thank the person for being understanding and always be aware of what they are going through My girlfriend is great to me, but my ex-girlfriend couldn't handle it. A good counselor also could help you deal with managing UC and perhaps the IBS that is often associated with. I too used a little immodium (I have found a dose of half a tab is enough) when I go to work or if I need it on trips. Having extra clothes/paper products on hand also help you to feel more comfortable if you need them in a pinch. So much of this is dealing with the mental toll it takes on us in our society where we are trained that only babies and young children should have 'accidents.'
Posted 5/1/2011 11:17 PM (GMT 0)
Thanks guys - some really good advice there. I guess by trying to not make it an issue I'm actually making it worse, it's good to get someone else's perspective on this.
Posted 5/1/2011 11:24 PM (GMT 0)
I agree with ThePostmodernIrony..... when I was really sick and in the hospital, my illness really effected my husband to where he had to talk to some of his teachers in College to postpone some of his assignments. Since then, both my husband and I have been extremely aware of what I can and cannot eat and he really watches out more for me than for himself when we are at a restaurant. I'm sure that since you have been with your boyfriend for a long enough time for him to understand what you are going through and is going to be there and be supportive of what's going on at this point in life. Sometimes stuff like this happens in a relationship to test the strength of the relationship to see how strong it'll last. Tests are good for a relationship. Also, maybe you need to check out your food diary again, maybe you need to change things up to help your flare.
Posted 5/2/2011 12:06 AM (GMT 0)
I keep a bucket in the car with a bag of clothes, wipes, and paper towels.  I know it is silly but it helps me feel better. If I start stressing out I say to myself well if I have to I can go in the back and go in the bucket. I also tell myself if I have an accident then I have a change of clothes and wipes to clean myself in the car.

I have a hard time with this in my marriage also.  It is stressful and my husband doesn't really get it. I also can't really talk to him about it.  My mom and grandma are my sounding board.  I also worry about surgery and I think I will be nasty or unattractive with a bag.  I know alot of it is in my head but like I said to my mom why do I have to get a illness let alone one that is nasty and embarrassing.  I know how you feel. Hang in there.

Also, I don't eat if I have to go somewhere. Like run errands.  I am hungry and stuff but it usually helps.

Posted 5/2/2011 12:53 AM (GMT 0)
Runaway, I am really sorry you're having these problems in your relationship. I have similar issues with my fiance, I always feel so guilty about having IBD. I know it impacts him and though I am feeling pretty good right now, I consciously do things to try to keep my UC under control like not drinking excessively. Many weekend nights he will want to go out and I just don't feel up to it. I know going out involves alcohol and I don't think drinking is the best thing for me. I guess my point is, you have to do what is best for you and it seems like he is understanding. My fiance has become very understanding of my need to stay in and relax a lot more often than I used to. Have you spoken to someone about gettting some anti anxiety medication? That may be helpful to relax you. I find that when I am flaring, it's best if I can avoid long drives or even rides in the car when I don't feel up to it. If I have to stay home, so be it. When I feel up to it, I use those days to their fullest.
Posted 5/2/2011 1:36 AM (GMT 0)
It's not really that I'm having problems in my relationship, it's rather that I keep trying to not make my UC a factor in our relationship. We're going strong and everything is fine, sometimes I just wonder how I can try to make sure that there are just the two us in this relationship, not me, him and my illness. I tend to overanalyze so I'm thinking I should just try to chill and not think about whether this might affect us negatively in the future..

(..I think anti-anxiety medication is probably a good idea, even regardless of the UC. :)
Posted 5/2/2011 1:03 PM (GMT 0)
I think you need to read to him what you posted today. Will help him understand where you are coming from.
Posted 5/2/2011 1:34 PM (GMT 0)
Also, I have UC and my husband has major back issues(he hurt his lower back in the Army and then hurt it at work, he is on surgery number 4). It is hard to be with someone who is sick but use this as a trial run. He seems understanding and if it really bugged him wouldn't you think he would have left by now.  I know with me I worry about a bag or having one forever, I know it isn't the end of the world but I worry I'm unattractive. I told my husband this and I said sometimes I feel like you just think whatever about my UC and he said I don't like talking about it because I don't like seeing you sick. It makes me feel really bad. He said I like to ignore things, which maybe is wrong he said but I couldn't deal with it if something happened to you. I feel better now that I talked to him about it so now I talk to my mom and grandma more about it then him because I know it kind of freaks him out. You know me and my husband laugh about my UC alot. You know I will say pull over now and he will laugh or I have to go and we both laugh about it, I guess that is all you can do. 

Also, I would talk to your boyfriend. Tell him this is forever. I will have health issues forever. If he can't deal with it tell him then tell him you understand and you guys should move on but I think he is dealing with it and understanding. I think it is more how you feel not him, which I understand totally. I think you have a great guy and it sounds to me like he doesn't really mind. Talk to him, I think it will make you feel better. This UC sucks and is so embarrasing and unattractive. Ugh

Posted 5/2/2011 4:09 PM (GMT 0)
I second all the suggestions everyone has provided to you. I often took Immodium with me everywhere. I always carried some in my purse just in case.

I also want to say that it sounds like you have been in a pretty bad flare for some time now. That alone causes mental stress as well as physical.

What meds are you on and have you discussed alternatives with your doctor? My old doctor would let my flares go on and on and on... I got to the point where I kind of gave up and thought I just had to learn to live with the constant flares. My new doctor has a different philosophy - he will help in any way to give his patients as much control as possible over the disease. It makes me feel better to know that my docotor is right there beside me helping me through this. I feel more in control and less anxiety now.
Posted 5/2/2011 4:53 PM (GMT 0)
If you are eligible for it, then colon surgery. Don't wait until

1. you loose your mate

2. you've taken so much medication that the side effects are worse than UC

3. your colon is so damaged that you don't have as many options for surgery as you would have had if you got surgery earlier
Posted 5/2/2011 8:06 PM (GMT 0)
It was a bit of a problem for me when I was dating my husband until I told him I would rather have peace (no loud sighs or other signs of impatience) to do what I need to do than be with any man, and I meant it. He never, ever again complained. Instead, he asks, what do you want me to do? (pull over now, stop at the next restroom, etc).

I also do much better when I am in the driver's seat, so I usually drive home from the restaurants! I have cntrol, I know I won't be bumped around unexpectedly, I will run yellow lights, little things like that make a big difference. And I keep a huge ziploc, plastic trashbag and roll of papertowels in my trunk. I would wear an adult diaper if I was doing something that left me uncertain about restrooms, but I guess I have just avoided those situations because it has never been necessary. I know what I can and cannot do (remote picnics are out).

I can honestly say that both my first and current husband were more bothered that they were so helpless to make me feel better than that the disease was undignified, smelly, inconvenient.
Posted 5/6/2011 1:39 AM (GMT 0)
Reading this strikes home a bit, but then again all of us who have UC or Crohns are just nodding our heads in agreement with what's being said. I'll add my story. I met a woman in October of 2009 just a little over a month after I was diagnosed and released from a week's stay at the hospital. I was probably at my worse mentally and physically that I had ever been in my life. My pancolitis was so severe I dropped from approx. 215 pounds and very muscular and athletic down to 155 pounds when I was weighed at check in. Regardless, we met, she knew my story and to my HOLY crap surprise, we actually started dating and began a serious relationship. Even though I slightly began to heal and feel better, I never fully remissed except when on high doses of Prednisone. My weight during June\July of 2010 was approx. 250 POUNDS, OMG!!! So she saw me skinny, and saw me bloated and moon faced. Once I got off Prednisone I flared again about 6 weeks later. Our relationship ended around the beginning of August 2010. She wouldn't admit it, but she was tired of my limitations due to my UC and my flares. We were able to go out and do some things but when you get those mini flares and have 5 to 10 BM's a day and they just hit all of a sudden, you don't want to do much or be gone for more than an hour or so tops and that ended up driving her crazy, the old "stuck at home" syndrome. Right now I tend to focus my dating toward those in the medical field (nurses rock!!), and those who thoroughly "Get It" when it comes to all the different flavors of IBD. I think some people are made to handle someone else's adversity and even own it themselves, other's aren't sure what to do so they run or are indifferent. What can you do?

I too pack a backpack and keep it in the car with TP, Baby Wipes, extra clothing, etc. I think this is SOP for everyone. One thing that gets me through the day is humor. My humor is very non-pc, I tell my friends how ironic it is that the guy from high school with all the "toilet humor" and public flatulence ends up with UC. I guess karma is paying me back so I use my humor to "OWN" my UC and not let it totally ruin my days when I'm flared up and sick. Yeah it can be a bit juvenile but I love telling the story of when I was custom fitted for adult diapers. LOL... I'll leave it at that.

Thanks for listening to me ramble. I'll let you all know how the VSL#3 DS works once I get going with that. It's been great reading everyone else's post's too, there's strength in numbers!

Be well, E...
Posted 5/6/2011 2:08 AM (GMT 0)
Thanks for sharing, EStrong :) UC definitely complicates things in the romantic arena..
Posted 5/6/2011 2:20 AM (GMT 0)
Like others have said, I think communication is very important. I talk often to my GF about everything related to my UC and IBS. My GF is very supportive and has become well informed about UC because of me. She is a good counsellor and has helped by cooking foods that are kinder to my gut and helping me with using medications etc. At times when I am down she will sit, listen and try to help me think more positively as opposed to feeling defeated.

I must admit that initially, before telling her I had a chronic illness that would undoubtedly affect the rest of my life, I was extremely nervous of her reaction... but slowly signs of my UC started showing which I couldn't hide anymore so I slowly broke the news to her (first telling her I had general stomach issues, then that I took medication then that I had UC then finally the ramifications of UC). Now that she knows I feel much more relaxed. Importantly, I believe UC has strengthened our relationship particularly because I believe she loves me for me regardless of my externalities or health. In a way all relationships will have to go through difficulties so it will be tested anyway (whether it be by UC or something else such as finances).
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