Crohn's & Intimacy

[CLobster2142]

Hi All,
This is a tough topic to bring up, but I'm getting to a point where I feel beside myself. Basically, I was officially diagnosed with Crohn's about 1 year ago, but in retrospect I know I've been symptomatic for about 3 years. I'm 30 and currently my Crohn's is not well-controlled at all and I am having frequent flare-ups despite my best efforts to take care of myself and find a medication that actually works. I am almost always fatigued, I've lost a lot of weight, I have abdominal pain often enough, going/not being able to go problems, blood passing, etc.

Now, all of this does not translate to me feeling rather intimate often during the day. And some days are good, some are bad. I've known my wife for 7 years, been married for 3. We had a very active relationship initially for a good 4 years, but the last 3 years has seen that decrease steadily. I didn't know why initially, but I definitely know Crohn's is a significant factor now. I love my wife more than anything and that spark is still there. She is my best friend and we have a great relationship. But my desire to have sex is so low because I am so tired all of the time.

The only time I really feel like I am up for it is in the morning because I feel like I've got some energy then. I've been making a concerted effort in the last month or so for other times of the day, but I know its still not enough. My wife is extremely supportive of me and is helping me through this, but I don't think she understands how difficult getting in the mood is now and how my desire for anything is severely diminished. I don't think I'm explaining it well to her either, unfortunately. This is further complicated by us wanting to start to have a family, but of course if I'm not being intimate with her this is not going to happen easily at all, which is even further frustrates her. I know she is starting to feel like I am treating sex as a chore, and I feel like that is dragging her down.

I don't want to point the finger solely at Crohn's, but has anyone else gone through anything like this? Perhaps I'm focusing too much on the disease too much and there's other things I need to work on to be a more intimate partner? It's driving a rift between us for what should otherwise be a happy time, and I want nothing more than to have a family with the woman I deeply love. But I just don't know what it's so hard to be intimate with the woman I love. I can't explain it, and I'm sure you can read between the lines that I am frustrated and getting pretty depressed by this. Any thoughts, criticisms, and/or experiences are welcome. Thanks.

 

[Ihurt]

Hey Clobster

I am sorry you not doing well. I am not dx with crohns. I was going through testing, but got waylaid due to having a bad reaction from the MRE I did. I had to drink that contrast and in turn it gave me nasty diarhea and I ended up with a horrible UTI that I am having complications with.

I can relate to what you are saying though. I have many other health issues ( IC which is a severely painful bladder disease, Chronic UTI's,digestive issues, fibro, possible connectie tissue disease, grade 1 heart murmur, chronic fatigue, etc..). I am happily married to my husband for 10 years. I got chronically sick 9 years ago. It has all been kind of down hill since then. For me, the IC bladder disease is the worst of all evils. It is the most debilitating disease for me. It caused me to not be able to work anymore which was a complete blow to me. It also robbed me of my sex life! So this is where I can relate to you. I am very fortunate to have a husband who is very wonderful and understanding. I have not been able to have actual sex with my husband in the last few years due to all the pain I have and risk of getting infections. He is very understanding and in fact he is the one who says it would not even be worth it to have sex only to have me suffer for days on end afterwards. I also have a very low sex drive right now. I think that is common when you are dealing with chronic pain and fatigue. How can you possibly want to "get it on" when you feel like crap right???

I really get where you are coming from. It sounds like your wife is very understanding and that is good. There is more to a marriage than just sex. I mean there are other things you guys can do besides the deed. I mean just holding each other and cuddling is nice. Also of course I do not want to get graphic here lol, but sometimes just kissing and touching and just being together is nice and satisfying. I mean believe me, coming from a woman, I think most women like to snuggle and just talk and be together. And like I said, there are other ways to be intimate if you are not in the mood or do not feel well or up to being that intimate. Also, some do find help in doing relaxation techniques. Just wanted you to know you are not alone... and it is normal to feel how you are feeling especially considering what you are dealing with in terms of health.... Hang in there....

 

[CLynn]

CLobster, I had Crohn's when my husband and I started dating. When we were 35 and I was pregnant with my 2nd child (last child, actually) he was diagnosed with type I diabetes. In all reality, he'd had it for over a year before being diagnosed. So we had many days and nights where he was not well but we didn't know why, he would go to bed right after supper, slept alot, etc. Now, I will admit, before we knew he was sick, I will tell that I wondered and doubted as to why we had lost most of our "time together". And what I will tell you is that communication is of the utmost importance, talk to her and be honest, she will understand much more than you think, she loves you!

 

[CLobster2142]

Thank you, both. I agree that communication is ofthe utmost importance, and there is certainly more to marriage than just sex. I'll admit, I'm a guy and I have some guy moments, but I try my best to be open and talk about how/what I'm feeling. I know it's tough for her and this is still relatively new to the both of us, so we're dealing as best we can. It's just a really tough time.

Ihurt, your personal experinces are very much in line with our's as well. My wife also has IC, chronic UTIs, and a heart murmur. So syncing up our feeling good and healthy times is soooo difficult. But you're right. She is indeed a cuddle-bug, lol, and I indulge. I'm really happy to hear you're going strong after 10 years of marriage despite debilitating health problems.

I don't know if we'll ever get used to it, but I hope it gets better when I can get my Crohn's under control. Right now it's just so tough and frustrating when our friends and family members seem to be having children so easily. I know it's upsetting for her, and I feel terrible about it.

 

[CLynn]

You'll get there, CLobster, you will. I've had this dreaded disease since 1988, there are the times where you just can't find one bit of energy, and then those times pass. And sometimes, we just get used to the no energy, lol!

 

[Ihurt]

Clobster,

Yeah, hang in there, I know it is rough, believe me, I know. I am sorry your wife has IC. My IC is horrible to the point of debilitating. If you dont mind me asking, what does your wife do for her IC and UTI's? Is her IC mild and how does she cope?

Oh and now that you tell me your wife has health issues, ( especially IC), I am certain she will be very understanding about how you are feeling right now in terms of your health and crohns. I swear to God, I think crohns and IC are two of the most horrid diseases there are out there. People should not be made to suffer so. I guess all we can do is trudge along and hope and pray for relief and to get better. I am sure you will get your crohns under control, you just got find the right treatment. You both are in my thoughts and prayers!!

 

[CLobster2142]

Hi Ihurt,
My wife was diagnosed with IC about 2 years ago. She went into remission with it for about 6 months, but unfortunately its back in the last couple of weeks. She definitely experiences significant pain sometimes especially after sex, is prone to UTIs, and can pass a lot of blood in her urine. It's strange, but her remission seemed to coincide with stopping birth control. I'm not certain if there's a correlation, but the 2 did seem to sync up.

Generally she stays away from spicy foods and rigorous exercise which seems to make her flare. She also had a surgery to help when she was initially diagnosed, but honestly it didn't much change anything. From her experiences, I can say surgery should be a last resort.

Some days can be tough, but my wife is extremely supportive and understanding. I give her that same support to her, as well. I very much agree that Crohn's and IC are not fun and are quite debilitating. It's an incredibly difficult reality to acclimate to. It is comforting (if that sounds strange) to know there are others out there like us. We look at our friends and family members our age who are all pretty healthy and it can be a little depressing. But, we're learning to cope and keep moving on. I wish you and your husband the very best. You will certainly be in our thoughts and prayers, as well. Thanks.

 

[Spooky1]

Hi CLobster,

Strange, i was always a morning only person. perhaps its because i had rested during the night. I know my nieces ex boyfriend is often fatigued and she always was understanding. For us females though i would have to confess that at times sex was impossible due to abdominal pain during sex. Didn't know it would be difficult until we'd started. Had to stop though. just out of interest do male sufferers have sudden pain during sex? I was thinking its cos its internal for us, unless you're gay of course. no bias though.