Normal sex life?

[em6263]

Hi guys.

I'm newly diagnosed. It's been a complicated few weeks, to say the least - wound up contracting c diff when I was in the hospital for the CD, and now have hemorrhoids from using the bathroom so much. Needless to say, I've been really, really sick.

I hope this isn't too personal, but I'm starting to get really concerned about my relationship with my bf. We share an apartment, and he has been completely amazing throughout this whole ordeal. He's really taken care of me. I don't know what I would have done without him through all this. I'm worried because we haven't had sex since this all began, about 6 weeks ago, and I have no idea when I'm going to be up for it. I just feel so ugly. I feel like a horrible leaky monster. I am terrified that our relationship is going to start to suffer. He means the world to me. He has been unbelievably understanding, but I can sense that he's starting to get frustrated in that department. Any advice would be greatly appreciated. I just can't foresee ever feeling pretty or sexy ever again after all this.

Thanks very much, and hope you are all well,
Em

 

[Heather_D]

Hi Em, I believe if he really loves you he will stick by you. My husband and I had only been dating a year when I was diagnosed. We've now been together almost 7, married two. We have definitely had our ups and downs. I don't recall the longest time we have gone without sex, but I definitely know it's been more than six weeks before. He became better with the gaps when I started opening up a bit more about what was going on with me. As embarassing as some of it is, I would rather help him understand than for him to think it's him. He's also gone to a lot of my appointments with me over the last year, so he was going to hear it anyway.

I had surgery 8 weeks ago and I believe it was around the 6 week mark the first time we had sex again and before the surgery I think we were down to maybe once a month for a few months because I was in so much pain most of the time. The first time was super awkward (since one of my incisions is really low and I don't like anything touching it) not as bad the second (although I still don't like to take off my shirt). I now have my cycle this week, so I guess it gives me a week that he wont try anyting.

Good luck to you. We all go through this. I hope your bf is supportive and understanding; it will definitely make things easier on you if he is. Regardless, you can always find someone here who can completely understand what you are going through and offer support when you need it.

Take care! Heather

 

[em6263]

Heather,

I can't thank you enough for your reply. Just ... thanks.

-Em

 

[Jennifer]

Can't add much more to what Heather said. I agree honesty is key. My fiance and I have our own dry spells due to either him or I not being physically of mentally able. We both have our own medical problems. We talk to each other about it openly and both understand where the other person is coming from. We're still planning our wedding so I know that the lack of sex isn't affecting our relationship in an extreme manner.

One thing you could do is just do what you can when you can. If you feel up to it, go for it even if its an "old fashioned" (use your hand or mouth if you're ok with that) which doesn't involve any bouncing around or the removal of clothing.

And don't worry, this topic has come up many times before so you aren't alone for sure.

 

[Bridgetinabox]

Hi Em,
I would try talking to him about it. Its so difficult when you are first diagnosed, to feel like the beautiful person that you are, when your insides are feeling wonky. Opening up a dialouge, especially when you have such a supportive partner, definitely helps. I've been really open about how I am feeling with my boyfriend, which has definitely helped when it comes to intimacy. When i had my gallbladder out, i swelled up like a balloon and felt like the michelan man, not to menton my abdomain was WAY too tender to put any pressure on. If you're in the mood but are too sore, forplay without the sex definitely helps, im with crabby on this one!

 

[sararay]

I have been on both sides. I had an ex-boyfriend who was supportive for a while but became really controlling and verbally abusive when my health got bad. My husband is AMAZING and supports me no matter what. The key is communication.

You have to talk to him. If he is a good guy he will understand, but you have to tell him what is going on. If you don't, that is what is going to drive you apart, not the lack of intimacy or the medical problems, but the lack of communication. These downs in life are very telling and expose who people really are deep down. I know it is hard but it can also build your relationship. It can help you see how really AMAZING he can be. Give him the chance.

 

[em6263]

Thank you all so much for your replies and advice. Had a really bad day today. I work part time as a freelance classical musician in addition to my day job; had a double today - 3 hour rehearsal near home, followed by a concert for a different gig that was 2 hours away. I was feeling ok in the morning, but mid-way through the rehearsal, I got really sick - it hit me like a ton of bricks. I freaked. Completely panicked. I had to have my bf drive me to the concert, so I could take a painkiller (lesser of two evils?), and took a lot of my frustration and stress out on him. It was a really bad day. He's been a saint through all of this. It's so hard for me to ask for help, which drives him nuts - I know it makes it so much worse for him, but I can't help the guilt. I cried all night.

I honestly don't know what I'd do without him, but right now, I feel like everyone would be better off if I were just alone. I hate putting all of this onto someone else. I'm so sorry I'm venting like this, but I'm just at my wits end. I hate what this is doing to me, and especially to him. He didn't sign on for this, and shouldn't have to deal with it. I just want to crawl into a hole and die already.

I'm so sorry to unload all of this onto you. You've been so kind and helpful, and I'm just a never-ending mess.

 

[sararay]

I have felt that way and sometimes do still get into that darkness. Remember that you didn't sign up for this either. You didn't do anything to deserve it. I am also not good at accepting help from people. I would rather do everything myself. A very wise person once told me that by not allowing people to help me I am robbing them of the opportunity of giving and loving another person. If people do it willingly then they need to give as much as you need the help. Think about how you feel when you do a favor for another person. You feel good and you are happy to help, so why rob another person from that joy as well. Men, especially want to feel needed and appreciated for what they do.

Also, you won't always be in a flare up. It will make you appreciate the good times even more. Also realize that while your feelings are normal, many of us go through situational depression. It is a real thing and you may think you want to push everyone away but that may not be what is best for you or them. I chose to get phsychological help twice throughout my journey. Once when I was diagnosed at 19 years old when my life was supposed to be beginning and it felt like it was ending. At that time some counseling sessions seemed to be enough to pull me through. In my recent flare I had to go through resection surgery, I had a toddler to chase and couldn't even care for her (my mom and MIL had to be with me all day while DH was at work because the pain meds made me loopy) and counseling was not enough. I have been given some options for medication that I am considering. You don't have to do this alone.

 

[Jennifer]

Unfortunately this illness is part of who you are and he seems to be accepting you for who you are completely. Lots of people have health problems and everyone goes to the dark side of feeling angry, lost, frustrated, sad, self loathing oh my how the list does go on. You gotta do your best to try and pull yourself out of those dark moods. Even a therapist can help with coping mechanisms (I think most of the people on the forum have seen a psychologist at some point). Talking about it helps, A LOT. I talk to my fiance about how I'm feeling and he does the same. We help each other get out of those dark moods. Talk to your bf about your worries and concerns and I'm sure he'll put your mind at ease.

 

[Heather_D]

Hi Em.

We all feel this way sometimes, my common saying to my husband is that he married someone who's broken. Guaranteed I got a lot worse in August 2011 (after we'd been married for a year). Neither of us realized how bad it was going to get; it's not really a disease you can predict. I guess that's part of the 'for better or for worse' part of the vows. On top of it, I was also told I have endometriosis in April from my surgeon...great. We all have days that we want to crawl into a hole and die. However, I really try focus on positive things. For example, before my surgery we had signed papers to buy a house; so I really tried to focus a lot of my energy into that. If you think about it too much it will make you completely crazy. As hard as it can be sometimes, staying positive can really help. I definitely know that can be easier said than done, as I have gone through several periods of depression over the last several years. You mentioned that 'he didn't sign up for this'; however none of us did. I certainly know I would not have signed the papers for this

Can I ask how long you and your bf have been together? Also, has your GI put you on any medication to try and control some of your symptons? They can really be beneficial to making you feel more 'normal' again. Depending on the meds, it can be a lot of pills; but I have found that they are better than feeling like a 'leaky monster'.

Keep your chin up and hopefully it will get better.

Take care, Heather

 

[Ally]

Hey there Em, I was diagnosed at 19 with CD. I got together with my then boyfriend not too long after my third surgery in a month. After almost a year with him I still felt guilty about him having to take care of me when I felt really ill. Then he just snapped on day and asked me what kind of person I thought he was. Did I really think so little of him that doing caring things for me shouldn't be a matter of course? That got to me loud and clear. I liked cooking and feeding him and just doing little things to make his life easier because I cared. Why shouldn't he be able to do the same thing? I know it seems sometimes that we take more than our fair share of being taken care of, but if he didn't like doing it he wouldn't. And I totally agree with sararay about it giving people the opportunity to do something nice. It's like with this forum. I've been on here and gotten tons of helpful advice and encouragement when I felt as if I was a huge burden on everyone around me. Now I get the opportunity to try and give a little of that back.

 

[Ally]

Oh and I love this thread from Dusty. http://www.crohnsforum.com/showthread.php?t=12000

 

[Neko76]

Hey Em,

I think that all of us women have these thoughts and issues with sex at some point as our disease does involve those regions. My bf, now fiancé and I were only together 4 months when I went into a major flare, abcesses, fecal matter leaking into vaginal area, then a cancer diagnosis which involved surgery and complete reconstruction of my vagina...oh and I now have a permanent ileostomy, cause obviously the other stuff wasn't quite enough!!! Needless to say our sex life has taken a definite hit, just starting to get back on track now almost a year later. Anyways, the two things that bothers my guy the most are; when I shut him out of what's going on and when I get too down on myself. I found it really hard at first to discuss all the details with him I really just didn't want to seem soooo unsexy. Now I find that after a lot of getting over my own issues, it is much easier to have the open dialogue and not have the stress of trying to avoid or hide certain issues. My guy finds it sexy when I don't let my disease get me down (I know.....easier said than done....It's certainly a process).

Also as mentioned above... I go out of my way to "take care" of him in other ways when ever I feel up to it, it's not quite the same but at least you can still have some intimacy and closeness. I also try to be more physical with a kiss or a huge on a day to day basis.

I wish you all the best and it will get easier.....

Kat

 

[em6263]

Thank you guys so much for your help. I'm sorry I haven't responded before now. I've just been really under the weather the last few days, and am really having a hard time with all of this. My doc is talking about admitting me to the hospital again (I talked her out of it last week).

I've had some issues with depression for years (which I'm now realizing were probably caused in some part by low b12), so I already see a psychiatrist regularly. I unfortunately haven't made it to my last few appointements because I've been so sick.

I'll write more later. I just wanted to say thank you.
-em

 

[em6263]

And... I'm back. Ate a bit more today than yesterday, think that's helped somewhat. I'm so, so tempted to just eat normal food (have been on white rice and bread for almost 2 months), since I'm just going to get sick anyway, right?

I just wanted to check in and thank you again. Seriously. I'm so grateful that I have found this group. It's been a very weepy, wallow-ey few days especially, and you have really helped me. A lot. I hope to be able to pay it forward someday too, when I've got this thing more under control.

Heather - my bf and I have been together about two years. We've had some rough things to deal with in that time - we were long-distance for a few months, and now this mess, but regardless of the circumstances, our relationship seems to be pretty good somehow. I can't explain it, because I've really put him through the ringer lately. He's just an incredibly supportive person and I love him to bits. I can't wait to start feeling better so we can get back to our lives already. He's a huge foodie (and great cook), so this has been especially challenging.

My doc currently has me on lialda and donnatal. She says I can't take anything else for the Crohn's till I get rid of the c diff. I'm on flagyl for that right now, but haven't been responding so well, so we'll see. The plan is to get rid of the c diff (having another test for that next week), then do another set of scopes (joy!) and a barium swallow to see if the Crohn's is still causing problems also. If that's the case, she said she'd probably try prednisone, and go from there.

I'm struggling a lot with guilt. I feel like I should be handling all this so much better than I am. I know that so many people have it so much worse. My bf has been my main support system through it - my entire family and most of my close friends are on the east coast, and I'm out in San Francisco. When we got together, I was healthy. We used to have so much fun, all the time. We were always going to concerts (he's a musician also), interesting restaurants, hiking, beer tasting, etc etc etc. And we had a great sex life. Things have just gone so far downhill so quickly, and seemingly out of nowhere. I so appreciate all of your comments. It's been a huge help to know that others have been there before, and that it does get better.

So yeah. Sorry for the long-winded-ness of all this. I have verbal diarrhea too? (ha.) Just really wanted to say thank you again. You all are really helping me through a very difficult time. Hope someday I can do the same.

-Em

 

[Heather_D]

Hi Em, Have you been feeling any better over the last few days? Have you tried a more 'liquid' diet for a little bit to see if that would help? I had to be on one for a while due to issues. Mainly ate ensure, jello, popsicles, chicken brother (with little noodles), etc... I actually had a lot of trouble eating rice for a little while because the stricture was so bad. I think it just caused everything to clog and then back up, wasn't pleasant. As unappetizing as a liquid diet is, it did allow me to live a somewhat normal life while I waited for the surgery.

Hope you are feeling better! What day is your c diff test? This disease is definitely not fun and everyone is different; which makes it more complicated to treat. Sometimes you just have to take it one day at a time.

Good luck! Heather

 

[em6263]

Hi Heather,

Saw the doc today - she now wants to wait until I'm done with the flagyl to re-test for the c diff, so that's about another week. I'm doing a lot better, though. My mom came from NY to see me over the weekend! We sat on the couch in our pajamas watching south park and just talking, for the entire time she was here. It was EXACTLY what I needed. Still not feeling great physically, but my brains are much, much better.

Thanks so much for all of the advice and support, everyone. It really means a lot to me. I hope you all are doing well.

-Em