Ulcerative Colitis and Relationships

Introduction:

I am 21 years old from Massachusetts and was just recently diagnosed with UC in August of 2011. I have no family history of IBD so the diagnosis came as a bit of a surprise. It has been difficult dealing with symptoms and also balancing school, work, and continuing doing the things I love like horseback riding and traveling.

My Story:

Hey Everyone! My UC diagnosis is pretty recent and came while in college, so it has been difficult dealing with a disease that is new to me and also balancing the stress of school, work, and a social life. So far the only thing that has given me good results was prednisone, but I was on it for so long at such a high dose that my doctors were afraid of potential harmful side effects. I am currently on Imuran, Humira, and a hydrocortisone enema, but have seen little relief from my symptoms so far. My family and friends have been very supportive and helpful, and I couldn’t be more grateful for how great they’ve been.
Although the symptoms are difficult to deal with, one of the most difficult things about Ulcerative Colitis that I have experienced is being in a relationship. I have been with my current boyfriend for four years. He has been with me through the onset of symptoms and through the diagnosis process, and I know he is trying his best to cope with me and my symptoms. However, I can see that he sometimes gets frustrated when I say I am too tired to go here, or my symptoms are too bad to go there. So I was just wondering if any fellow UC’ers have any tips on how to explain to a significant other exactly what’s going on. This is especially difficult when he is in the mood to do more “physically intimate” things and I just don’t feel anywhere near up to it. I feel awful that I can’t fulfill that aspect of the relationship as often as I’d like to. There are days when I feel well enough, but there are days when I just can’t. He has been with me for three and a ha lf years while I was healthy, and I’m finding it hard to explain to him how there will be periods of time when I just can’t, or that we may be interrupted by my symptoms. So i was just wondering if anyone has been here or has any advice?

written by Erica

submitted in the Colitis Venting Area




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4 Responses to Ulcerative Colitis and Relationships

  1. Ash May 28, 2012 at 5:21 pm #

    honestly, it has to be a 2 way street. he knew you when you were healthy and he knows how bad things are now, so my advice would be to try and keep the communication lines as open as possible. my husband is super aware of how i feel all the time, and even if I’m saying I’m okay to go out and do something, or eat a certain something, he insists on me taking it easy. have yall ever gotten to sit down and you really be able to explain exactly how bad you feel on certain occasions and why you can’t/won’t go anywhere? he probably knows you hurt, but maybe he isn’t understanding how AWFUL it really feels. Also, if my husband and I have plans to go somewhere and it’s not a place where I can eat much or whatever, I’ll eat a little meal before we leave and take all my meds with me and then snack a little when we’re with everyone else and that helps control some of the problems. I had UC for 6 years, had my entire large intestine removed, had a temporary ileostomy for 6 months, then had my j-pouch hooked up… now within the last 5 months i have had 8 ER visits, 5 hospital admittances (4 for GI problems and 1 for double pneumonia with a collapsed lung), and within the last 3 weeks had my diagnosis changed to Crohn’s… all the while, my husband was there and even tho I frustrated him at times, you have to be willing to give and take. this disease isn’t going anywhere, there’s no cure, so it’s like a packaged deal he (or anyone) has to be willing to accept.

    i know you’re only 21 so marriage isn’t something you might be thinking of yet (or at all) but whether you marry a guy or not, if you’re going to be with someone you have to know there’s going to be hard times and good times and learn to bend and flex with each other. your flare won’t last forever and you’ll be able to get back to yourself… and hopefully the right guy will be there to help you through the dark times. if anything, let him read some of the stories and comments from those of us with the disease – or better yet, the stories or let him talk to the people that are the significant others of us UC patients. Just as we understand each other bc we have IBD, maybe the significant others understand each other more.

  2. Elizabeth May 29, 2012 at 6:02 am #

    I’ve had UC since before I turned 21, I had been in a deep relationship going on 4 years when i started showing symptoms. I am now 23 and realize that my UC was a big facter in why we are no longer together, that and I’ve been with another guy who knew i had UC when he met me, we dated and got engaged in one year, He ended up so frustrated all the time that he couldnt take paying for the expense of me and my disease. I havent been able to work and once again had to drop out of school due to my disease.Because I hadnt had my disease very long and it hadnt been very bad in over a year I told him I could make it threw a year and a half program in a different state. Boy was I wrong, 6 months in I ended up sick 2 times and in the hospital both times. The first time they did a colonoscopy. The Jan 4th of this year they called me on the phone and told me the biopsy came back and I had crohns…..I was back in the hospital in that state right before coming home. One month later I was back in the hospital here at home and they did an endoscopy and a colonoscopy on easter. During that hospital visit 2 things happened. The man of my dreams walked away from me and the state said they’d pay for remicade infusions, oh and they found C-diff in me. Well here I am still talking to my ex whom I love dearly, He still tries to take care of me when he’s home and I’m visiting him. And I have C-diff again, Remicade seemed to have started working after the second infusion but with the c-diff its hard to tell. On the 8th i have my 3rd infusion and I cant wait. People say it doesnt hurt and it doesnt but its uncomfortable to have to sit with the bag in your arm for 5 hours when the nurse forget to come back or she gets too busy with someone else because they are short staffed. It frightens me more that I still have symptoms and I had my second infusion. I worry that I’ll never get my life back But I know every day that I keep trying Is one more day I get closer to recovery. Oh and they told me I dont have crohns I have UC….But either way the remicade should clear it.

  3. Cortney
    Cortney May 31, 2012 at 10:06 am #

    Hi Erica,
    I do not have UC; however, my husband does.
    Just like Ash said, it’s a two-way street. Although one street may be lined with heavier traffic, the road can’t be closed. What I’m saying is that communication is the key. You need to make sure that your significant other understands everything that you’re going through – encourage him to ask questions and do research on the effects of the disease on a person physically, mentally and emotionally, and even the side effects of the meds your on. The more he knows the better he can help you. Don’t leave room for guessing. Tell him that its easy for you to get dehydrated, that you’ll be tired a lot, that you’re probably going to try different medications and diets and anything else he might need to know that might change the way the relationship needs to be. Also, make sure he knows everything you’ve done to treat it – this helps him help you, which he’ll want to do.

    On the other hand, there are some things that you should do, too. As the wife of a UC patient, I can tell you that a relationship is not a piece of cake – for either person. You should understand that he’s going to worry a lot, and there’s a lot of mental and especially emotional strain that’s going to be put on him. You need to make sure that he’s doing okay, too. I always love it when my husband tells me how much he appreciates me, and I make sure to tell him how wonderful he is.

    The biggest thing he needs to understand is the disease itself. The biggest thing you need to understand is that there’s a level of strain he’s going to be put under.

    But, the biggest piece of advice i can give you is this: Don’t EVER ask yourself, or especially him, why he’s with you. This question is extremely offensive to the other person in the relationship – I know because my husband has been there. If he loves you, he’s not going anywhere.

    Although I don’t have it, I have accepted Ulcerative Colitis as a part of my life. I always tell my husband that UC is a *part* of his life, and that in no way does it define who he is. I’ve let him know that his disease is ours, not his, and that I’m ALWAYS going to be there to help him get back up when UC has knocked him down.

    I hope this helps, and good luck.

  4. Meghan Christine
    Meghan Christine June 4, 2012 at 11:07 am #

    Hey Erica!
    I feel that we are at similar points in our lives!! I have UC, am 21, going through college and I totally understand how you feel with your Boyfriend. I dated my boyfriend for a year before I was diagnosed and have lived through the worst parts of my UC with him and it’s almost four years later. It was definitely hard and still is when it comes down to what the Old Meghan (before UC) was like and what I am like now. There have been a many of conversations between us and when he wishes that the Old Meghan could come back sometimes. I can tell he will get really frustrated as well when things come up (flares) and I can’t always do some of the things that we planned. I definitely feel sometimes that me having UC is a burden that he feels the need to carry as well. But, he never has left my side. When I realized that he was having a hard time with it all, he explained to me that he felt helpless and incompetent on the whole situation. I ended up explaining some things that I didn’t feel entirely comfortable with; like what it felt like to have a flare, or what all those pills really help me with. He was still kinda confused so I took him to one of my GI doctor appointments, where he learned a lot!! After he really understood what I was going through, he became super attentive to how I was feeling all the time. If I ever give a look of any kind of upset, he does whatever he feels he can to make me feel better. He still struggles with the whole situation sometimes and I have given him many chances to exit the relationship without guilt if me having UC is too much for him. He has amazed me, but he refuses to leave and takes any sacrifice in stride. As for the more intimate details you’ve mentioned… he usually knows when I’m having a flare (which is often) or not feeling my best since we’ve been living together this past year. When that is all going on he gets the hint and it’s never a question. It’s frustrating sometimes but you understand that you just simply have to be intimate in a unphysical way sometimes.
    The way I’ve understood things throughout the years is that if he’s made it this long through good and bad. And, he is still more than willing and determined to be with you despite everything. Then that’s the man for you, even though you’ve changed the man in your life needs to change with you or it won’t work out. This whole ordeal has definitely made us stronger in our relationship even when certain things are lacking… One important thing I can suggest, don’t blame yourself because you have UC or that your not good enough for anyone let alone him because of UC. I went through a time where I thought that and looking back I sometimes feel ridiculous because I let UC define me in that way.
    One day my boyfriend told me “Basically I feel like this will just be an obstacle in our lives forever, but we deal with it together and make the best of whatever heads our way.” That gave me hope that I would never be in this alone in this.

    Keep your head up if this is rock bottom we can only go up!! Best Wishes for you and your boyfriend!

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