Relationships with Colitis 2013 Survey Results

(IF YOU ARE WANTING SOME TIPS ON RELATIONSHIPS, THERE ARE SOME GOOD TIPS TO THINK ABOUT AT THE BOTTOM)

In this month’s survey, there were 301 participants who have been diagnosed with ulcerative colitis.  There were two participants who answered “no” regarding having ulcerative colitis and their responses have been removed.

AND, guess what…

218 of the participants this month are women (that’s 72%) and 83 participants are men or 28%.  Come on guys… whassss up amigos:)

Below are the questions and answers.  And, for the final question, I included the responses from people who answered the final question AND who uploaded their pictures.(Big thanks to all the PP’s (Picture People:))

In the interest of time, I’ve once again published these preliminary results, without all of the hundreds(maybe thousands) of other comments and answers from many of the participants to come in a future posting with all the details.  That will take me several days to get squared away on, so for now, I think you will all get lots of good info regarding relationships and ulcerative colitis below.

Thanks for all your participation once again newsletter people!

-Adam Scheuer

Question #1:

Have you ever stopped trying to start a new relationship(s) because of your colitis?

160 people or 55% – No

99 people or 34% – Yes

32 people or 11% – Other Option

Question #2:

Have you ever been in a relationship that stopped because of your colitis?

258 people or 86% –  No

43 people or 14% – Yes

Question #3:

Have you ever felt nobody is going to want to be with you because of your UC?

137 people or 46% – Yes

101 people or 34% – I found someone who I’m still with before I was diagnosed:

58 people or 19% – No

5 people or 2% – Other Option

Question #4:

Do you find it very hard to talk about UC when you are starting a relationship with someone?

68 people or 23% – No, it’s not a big deal for me to talk about

53 people or 18% – Yes, it’s hard but it’s getting easier as time goes on

45 people or 15% – No, it’s not easy, but not very hard

43 people or 14% – Yes, it’s very hard to talk about

37 people or 12% – Other Option

35 people or 12% – Yes, so I avoid it as long as possible

13 people or 4% – Yes

7 people or 2% – Commitment, now that’s hard to talk about

Question #5:

Describe the best date you’ve been on since being diagnosed with UC?

(below are just 5 of the 94 responses, all of the responses will be published in the follow up detailed version of the results)

• We met up and ate patbingsu (a dessert in Korea, shaved ice, ice cream, red beans, strawberries!.. I’m an expat in Korea). Then we went to the jimjilbang, or Korean spa, together. The baths are separate, but then you put on the shorts and tee from the spa and hang out together in different saunas, relaxing, wearing face masks. It was so relaxing!
• Yeah I met an amazing girl and really fell for her too. She was great, making me the food I could eat, the non-drinking wasn’t an issue but that didn’t work out for different reasons and that happens too. Never talked about bowel movements though and I had little or no urgency at the time.Just one example: going dancing for hours with my new love and then having him sit with me all through the night while i was in agony holding my hand, bringing me water, accepting this disease as just another part of who I am.
• I’ve been on a lot of great dates since being diagnosed, but one that is great in the context of this survey is when I was on a date with a guy I really liked and I told about my UC. He was a nurse so he totally understood my condition. He took things very seriously and told me that having UC did not in any way make me less attractive to him. Having him reassure me that I was beautiful regardless of my disease meant the world to me. After that I have felt much less ashamed and more confident.
• I had just started dating someone (about a week in officially), and we went to our rugby clubs 50th anniversary celebration. We were all dressed up and ready for a party! But after the dinner I started to get a “colitis stomach ache”.. the ones where you’re bent over in fetal position doing everything in your power not to start crying or screaming in pain. My date came over to see what was wrong and said “I’m taking you home.” We ended up spending the night on my couch watching Family Guy, with me in my sweats, simply holding hands because I was in too much pain to even cuddle. It was an amazing night and I knew I’d found an amazing guy who wasn’t going to let colitis get in the way of our relationship… 3 years later I’m still sure!

Question #6:

Would you consider starting a long term relationship with someone else who had a disease such as UC or another “auto-immune” disease?

155 people or 52% – Yes, that for sure would not be a problem with me

43 people or 14% – I don’t know

42 people or 14% – Yes, but it would make things more difficult

39 people or 13% – Maybe, it would depend on alot of things though

15 people or 5% – I don’t think so

7 people or 2% – Other option

Question #7:

With regards to your UC, what are the challenges you’ve faced with relationships? How have you overcome them? And any advice you’d like to share with other UC’ers who might be struggling with starting/having/figuring out the whole relationship deal?

 

 

 

 

be open and honest with your partner. its a lot less stressful to let the other person know how you are feeling. if you need something let them know. if they dont want to understand and will not help, they are not worth your time.

 

 

 

 

Some of the struggles are : having to run to the bathroom a lot while being on out on a date. Lack of a sex drive during a flare, I sleep on the couch when I know I will be up going to the bathroom a lot so I don’t wake my partner which isn’t a big deal but I can tell he is sad and lonely when I do. I can be mean and take things out on my partner when I don’t feel good and or when I’m on prednisone. My partner knows a lot about what I should and should not be eating during a flare, so if he sees me eating junk I get a little lecture about how eating right is so important. It can be frustrating since I eat smart most of the time but have my days.

 

 

 

 

To not let him feel guilty if he wants out of the relationship because of my UC. We’ve always talked everything out, the biggest problems happen between us because of miscommunication. My advise to figuring out the relationship deal is don’t try to coverup how your feeling because of your UC and try to put yourself in your partners shoes and find out how their feeling when you go through your Flares. Usually they feel worst Than you do and just want to understand what’s happening and how they can help.

 

 

 

 

 

 

Trying to figure out how to communicate, and live with this disease and deal with it as come and share with my partner in crime ( my wife).

 

 

 

 

I was married for 16 years before I was diagnosed with UC, and we will celebrate our 25th anniversary this year. I know it has been hard on him sometimes especially during flares. I am so thankful for his support. If you are thinking about being in a relationship, you should be open about your UC sooner rather than later, I think, because it affects so much of your life. There are people out there like my husband who can handle the stress involved and be a great source of joy and support in your life. It is worth the risk.

 

 

 

 

 

I found someone who I’m still with before I was diagnosed.. been with my boyfriend since i was 15 years old, got diagnosed with UC When i was 19, and now im almost 21..were still going 5 years stong
He was very supportive the whole time and stayed by my side my whole week in the hospital, and even stayed by my side when i was all swollen with a “moon face” from prednisone for months! That was such a struggle for me my looks had such a big transformation i didnt want to leave the house.
If someone really loves you they will be by your side no matter what happens and support you <3

 

 

 

 

The sex life has been a little affected. Try to do what you can when you feel good.

We are all sick, but don’t take it out on the one’s you love.

Get better. Do what you can. Change your diet. I have tried many things to obtain remission. (Took 1 and a half years to do it.) “Eat for Health” By Dr. Fuhrman helped me and taking sulfur out of my diet.

 

 

 

 

I actually moved in with a woman I was dating into a small 1BR/ 1BA apartment. The biggest problem was that the bathroom did not have a fan.

My advice is that people take their cues on how to act and respond to things from you. It’s not that big a deal to most people unless you make it a big deal. Be your best self, and tough it out as much as you can, don’t allow yourself to be a victim of the illness, just deal as best as you can and keep going.

 

 

 

 

 

Challenges include dealing with a flareup and how I would cope with the “embarrassing symptoms” that plays a big part of the worry of getting to know someone new

 

 

 

 

 

Being honest about the fact that I’m a poop monster, and that I don’t want kids as a side effect of having this disease all the way up my family tree. Also having the honesty to tell them when I’m feeling physically bad instead of just withdrawing, so thy know it’s not their fault.

 

 

getting over the embarrassment factor was a big challenge. I was initially fairy mortified that my hubby (boyfriend at the time) could hear my “bathroom noises” – or that it would wake him up. the best thing we could do was joke about it – now we laugh about it & it’s really not an issue. he’s the most understanding, caring guy – if someone is going to judge you for what you have to put up with, they’re not worth having around!

my advice is be open at the start of a potentially serious relationship – mention food allergies, needing the bathroom more than the average person, the meds you have to take… they don’t need to know more than that unless it turns into something special.

 

 

 

 

 

 

I’m still trying to figure things out in regards with relationships… I haven’t been successful in this area, but I just don’t give up.

 

 

 

 

 

 

It has distroyed our sex life. I am ussually too sick to be in the mood.

 

 

 

 

 

 

I can’t go out on dates with whoever I want and whenever I want. I have to do things around my UC and when it is acting up. I am not as confident when i’m feeling sick so I can’t be outgoing and spontaneous. I have no advice just because i’m totally clueless on how to make a relationship work when you have UC. I’m just glad I can have pets so they keep me company!

 

 

 

 

The hardest part of having UC and been ing in any relationship is knowing that others see you struggle and that they can’t do anything for me. When I was in a flare it definitely put some strain on my relationship with my boyfriend because we could rarely have any private time. But he was extremely supportive and a lot of that strain was probably made up in my own mind.

 

 

 

I was in a relationship before being diagnosed and my boyfriend says it does not bother him at all. At times I am embarrassed with some of the things I go through but he says “it happens…what are you gonna do about it?” like it’s no big deal. I feel very lucky that I have someone that doesn’t feel it is a problem. I don’t know if they would be called difficulties or challenges but I don’t really think he understands the fatigue portion of it. Sometimes he gets upset that I fall asleep like I don’t want to spend time with him. Sometimes I really can’t help it and other times I can be moody (maybe side effects of meds/sometimes my own frustration and anger of having the disease). One difficulty is being able to eat out together. I feel like I hold him back from going places because I can’t eat certain foods and we always end up going places I know there is something I can have. As for advice….don’t give up on dating just because there are certain people that may not want to be with you because of the disease. There is that someone special out there for everyone. When you find it and you can comfortably talk about everything and find it funny, then that’s the one. Don’t be embarrassed by it….having a sense of humor about it goes a long way!

 

I was lucky enough to find a guy that stuck with me, even after a ditched him so so many times by saying “I’m not feeling well.” But I’m not sure everyone out there would have the same patience/persistence. My advice is to explain your disease as much as possible/you’re comfortable with. Though I don’t believe we should ever be embarrassed about our UC, I understand that talking about pooping your pants on the first date might scare them away. All I used to say is “I have colitis, sometimes it gives me stomach aches.” Easy, safe, not-gross, but provided no explanation for why I might be going to the washroom so much, or why I might not want to go on all types of dates (swimming in a teeny bikini with the potential for explosive diarrhea? pass). So of course you can ease into it, but if your date says to you “I’ve never heard of colitis, what is it?” Jump on the opportunity! Stomach aches, going to the washroom more often, pain.. and make jokes to make them feel more comfortable.. “So if I run off in the middle of the date it’s not because I’m trying to make a get-away.. just using the bathroom.” And invite them to ask questions in the future! Make it something you can talk about, not something you hide.

Patience runs thin when chronic illness is concerned. It’s the whole “ugh you don’t feel good again? Or still? Get over it already” People get frustrated and don’t want to deal (in my experience). I often was blamed for my illness as being psychosomatic (all in my head) and that I wasn’t trying to be positive enough or trying to get healthy. My guy was really supportive in the beginning, especially when I was on my deathbed (seriously). He even told me how beautiful I was when I turned into the ugly prednisone monster. I had lost half of my hair, had moon face, gained weight in places I don’t gain weight, had acne all over my body but yet he still loved me and told me how gorgeous I was. He didn’t care what I looked like. But then over time it all changed, not that he didn’t still want to be with me regardless of my physical appearance but I really started to feel that, even though he experienced my problems first hand in absolutely every way, he still didn’t understand what I was going through. (He even had similar problems.) it got so frustrating.

Thankfully I had a relationship where we kept everything real. I wouldn’t hide my bathroom habits from him. We didn’t hide anything from each other. It was so open and comfortable. I know a lot of people are embarrassed about their disease and what happens throughout the process but I firmly feel that we need to be open books to people about this disease. Yes, everything in due time because its never good to give too much information too quickly when dating, but once you’re in a good place, I feel you should just tell it like it is. As a matter if fact. People can’t argue with that, it’s just the way things are. Now what they decide to do after that is on them.

I’m super open to people about my disease. In doing so it allows others to be able to feel safe and share with me. It’s crazy just how many people have digestive problems. I wouldn’t have found these things out and been able to help others if I wasn’t open about myself. So that’s my advice, be open and matter of fact about your disease. It’s something we have to accept and embrace. If you’re strong and confident about it and yourself people will be way more accepting.

 

 

 

Painful intercourse would be a huge problem during a flare.

 

 

 

 

 

I guess the hardest part is when you have a flare up. It’s less embarrassing talking about it then it is dealing with it first hand. Putting that person in the forefront of the situation is really difficult. My boyfriend now is experiencing that situation right now, amd even though I already told him what I go through every day to prevent this from happening and what I went through im the hospital to get to a place of peace, it was still really hard asking to lean on him when I started to feel ill again.

 

 

 

 

I was in remission when I met and started dating my current boyfriend. He knew about the UC and it didn’t bother him at all. I tell everyone about my UC, whether or not they are a “prospective boyfriend.” I think it’s something interesting to talk about, and I find that people are interested to know more about it. So bringing up the UC or deciding when to “reveal it” to the person you’re going out with has never been an issue. Things are much easier if you are open to talking about everything. Even after I did have a flare of the disease, my boyfriend still didn’t care–he was just worried about me and wanted me to feel better. Anyone that only cares about you when you are “healthy” is not worth it anyway.

 

 

 

 

I try to keep a sense of humor about my condition. No sense in being a cry baby about it. I have UC…it doesn’t have me…I am still going to live my life and be happy!

 

 

 

 

 

 

at times I live in fear of having an accident (whether in a relationship or just day to day functions).

 

 

 

Bc I haven’t really been in a steady relationship since my diagnosis I don’t have many challenges. The only challenged that I face when thinking about being in a relationship & dating is how I will tell the person about my condition. Or how I will react if I have a flare while on a date….

I have become a little more comfortable telling others about my condition bc I see that I am not the only one. For a longtime I felt that I was alone. Silly right? But it’s true. My advice on that is to get connected to forums & websites (such as this) about colitis & other autoimmune diseases, so you can learn how to open up. When the time comes u will feel more at peace with talking about it with others & more at peace with your self mentally, emotionally & physically :-)

 

 

 

The biggest thing I feel is the embarrassment of a flare if you weren’t having one when you first got together. I never had a flare while with my current bf until right before the birth of our child. I know, after having kids together it shouldn’t be embarrassing but I was. Anyways, when I had the flare that’s when it was finally time to explain to him what exactly Ulcerative Colitis was and what symptoms I usually have I just never b*tch about it, or what was happening at that time, why I cried in pain or why I was running to the bathroom more than a normal person lol. I come to realize, if someone really cares for/loves you, then something like a health problem, should and will not matter. He is more supportive than I could have ever imagined.

 

 

 

Being hospitalized for weeks at a time put a tremendous strain on my marriage. My husband had to take my daughter to and from school then to the hospital to visit with me. He didnt understand why i needed to be in the hospital. he could never understand how bad it is. After 4 hospitalization a in 8 yrs. I guess it was too much for him. Strange thing, after being divorced for the past 5 years I have not had a flare that I couldn’t get under control and not spent one day in the hospital!!! Maybe he triggered the flares or contributed to not being able to get them under control.

 

 

 

 

Just my confidence and losing myself in the relationship. I didn’t feel pretty or acute attractive anymore.

 

 

 

 

The key is preparation. Not just yourself, but the other person. Deciding the right time to tell them can be difficult and you’re never going to be 100% comfortable telling another something so personal, but people are a lot less judgmental and harsh than society would have you think. My most recent relationship is going on 12 months, we got together when I had UC and he supported me through the surgery. It really is worth the risk. :)

 

 

 

 

Being tired and chronically unwell. I had j pouch surgery only 6 months into my marriage. Could not get much bigger than that. He was amazing!