Touchy Subject- Crohn's and Intimacy Problems

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crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 8/19/2008 2:35 PM (GMT -7)   
hi everyone, im just wondering if some of you are willing to get personal with your stories and advice about being intimate with everything we go through. ive had a boyfriend for over two years and when i was in remission over a year ago we used to have a great time. we're young and in love and thats the way it should be. but im ashamed to say that we havent done anything more than kiss in over 6 months and i find myself feeling extremely guilty. the obvious reasons for this lack of intimacy are the constant pain, nausea, touchy bowels, urgency, and general discomfort as well as things like my self awareness and embarrassment due to the mess that is my backside (aka skin tags and raw rashy areas)... it just don't make me feel sexy. and i know it's not my fault that when i or anyone feels so sick i'm just never naturally in the mood. i would be perfectly content not being intimate until im 100% but i feel really bad like im depriving my boyfriend i dont want him to feel unloved. anyone else experience this or have any ideas or ways to create intimacy through the pain and symptoms or ways to feel good about yourself even when your "down there" area is a mess.? thanks
diagnosed with Crohns since 2004
Hospitalized often for colon rest and TPN
Have been on 6MP, flagyl, cipro, prednisone, remicade (3 1/2 years).
Currently trying Humira every week.
Just got put back on Prednisone :(! 30 mg/day
Put on Augmentin too


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 8/19/2008 2:44 PM (GMT -7)   
I bet I'll be popular with the guys with my answer. I know what you mean and I have a lot of the same issues. More or less I never really feel "in the mood." But when I want to do stuff but am feeling gross I usually tell my husband tonight is all about him, and just do what there is to do w/o my pants coming off. Sometimes once I am in the midst of doing whatever we are doing I forget how icky I feel and don't care what I look like and just go for it. Other times it remains just about him and I feel good for making him feel good. Don't forget you can always leave the lights off or wear lingerie. But unless you have wrist problems and mouth sores there is probably something you can do lol!
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14994
   Posted 8/19/2008 2:45 PM (GMT -7)   
Your not alone in your feelings. When you are feeling like crap the last thing you want to do is have sex. I am doing pretty good Crohnswise, but because of being anemic, and the joint pain I live with daily, some days I just ache too much or am just too tired.

Many folks in the past have recommended "other" things than intercourse you can do;) My husband and I snuggle alot. Sometimes just feeling his skin next to mine is enough. Hopefully some of those folks will be along soon with more ideas. Just wanted you to know, its not only you.

One lady that used to post alot here, said it had been 2 years since she had sex with her husband because of being ill and multiple surgeries she had to have. She is now feeling better and has been able to reconnect with her husband.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 8/19/2008 4:10 PM (GMT -7)   
You are definitely not alone! When my joints are flared and I'm so tired that I have no energy, being intimate is the last thing I want to be doing. Medications interfere with it all too. My poor hubby gets upset sometimes but he understands and just has to be patient until I do feel good.
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS and Arthrities too
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone 10mg this week
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg once a week
                           Wellbutrin twice a day
                           Cipro
No Surgeries
 


closure
Regular Member


Date Joined Jul 2008
Total Posts : 471
   Posted 8/19/2008 4:54 PM (GMT -7)   
my boyfriend and I recently went 6 months with nothing more than kissing. we've been together for almost 3 years and it was never like that before. with being sick like this sex is honestly the last thing on my mind. I kept telling him it had nothing to do with him, that I still loved him and found him attractive, etc...and tried to explain it was mainly because of how sick I was. that's definitely important...making sure they know it's not them or whatever. I know if the situation were reversed and he didn't explain things or reassure me I'd be thinking the worst. I felt horrible about it though...he kept telling me it was ok and that he understood, but I just felt bad. then I would try to "force" myself to be sexual and then it kind of felt like a job which totally turned me off...I felt like this was something that should be natural, not forced...you know? so that didn't help things.

FitzyK23 has some good suggestions. also going so long without sex can leave you feeling disconnected from your partner. try having some heart to heart conversations, cuddling, kissing, but don't feel pressured to have sex. make getting reconnected your goal, not sex. tell him your insecurities too. if you start to connect again emotionally you may start to feel sexual again and forget about all this crohns stuff for a little while.

where did I come up with these ideas...therapy! lol. that's how bad I felt about it...I actually devoted a whole therapy session to it and boy was that an awkward hour. I felt so guilty about the lack of sex though so I didn't care about the awkwardness...til after then I felt really embarassed thinking about how much I shared. maybe I should've looked for a sex therapist or someone who specialized in intimacy lol. as awkward as it was though I got some good ideas and better ways to approach the situation.

in case you were wondering...after 2 weeks of sort of what Fitzy was suggesting, plus the reconnecting without worrying about the sex it all worked out. hopefully it won't get to the point it was at before. like tonight I'm really sick, but hopefully it won't be the start of another dry spell.
27 female
 
Bipolar, panic disorder, PTSD, PCOS, hashimoto's disease/hypothyroidism, acid reflux, and in the process of being diagnosed with either crohns, colitis, or even lupus...who knows really! the docs sure don't lol. Now possibly even celiacs disease!Lots of tests coming up so hopefully I'll know more soon. Too many meds to list!


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/19/2008 5:19 PM (GMT -7)   
My boyfriend and I are all right just being together. He understands that I am not always able to be intimate in that way so use that time to bond mentally..and then for the rare occasion that I am feeling well enough to have sex we take advantage of it. It doesn't have to be rigorous or anything I mean sometimes we're just extremely gentle and careful. We both miss those days where we could do whatever we wanted whenever we wanted, but it is what it is now and I think if you both can be happy together then that's what counts :) It's really nice that your boyfriend is staying by your side in all of this, and I wish you both the best of luck.

As for pleasing him well..I can only say what the others said. As long as you don't have mouth sores or inflamed joints hah.
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 8/19/2008 6:26 PM (GMT -7)   
haha thanks guys for the good advice, may i just add though the one thing for me that's a downfall for the suggestions from fitzy and others is i do get cracks on the side of my mouth from inflammation called angular stomatitis (extremely painful) so that can be out of the question and not to mention it doesnt help my constant nausea haha and then i get severe joint pain in my wrists and finger (and knees but thats irrelevant to this topic) so my poor baby is out of luck haha. but yeah he's amazing and is always very understanding and im lucky that i dont need to added worry that he will go elsewhere if im not able to be sexual, because i know he wouldnt, i mean if he didnt care enough about me to be 100% dedicated he wouldnt deal with all my crap haha figuratively and literally! lol but yeah i hope there is a day soon when i feel okay and we can break this dry spell. great advice though and im glad to know im not alone and its also nice to hear that other boyfriends/girlfriends have also been supportive. it makes me reassured that his loyalty is really too good to be true! haha
diagnosed with Crohns since 2004
Hospitalized often for colon rest and TPN
Have been on 6MP, flagyl, cipro, prednisone, remicade (3 1/2 years).
Currently trying Humira every week.
Just got put back on Prednisone :(! 30 mg/day
Put on Augmentin too


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 8/19/2008 6:37 PM (GMT -7)   
Haha, buy him some good videos then lol!
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6923
   Posted 8/19/2008 6:57 PM (GMT -7)   
ok having just taken my second therapy class this summer that pertains to subject. I would suggest also a selection of instruments for him.
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 8/19/2008 7:51 PM (GMT -7)   
haha nice idea, and yeah im really thinkng about seeing a sex therapist for other reasons anyway so maybe ill get some good ideas
diagnosed with Crohns since 2004
Hospitalized often for colon rest and TPN
Have been on 6MP, flagyl, cipro, prednisone, remicade (3 1/2 years).
Currently trying Humira every week.
Just got put back on Prednisone :(! 30 mg/day
Put on Augmentin too


hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 8/20/2008 7:15 AM (GMT -7)   

Okay....guys point of view....but know going in this is a POV from a guy over 50 and one who has been with the same partner for over 28 years.

My wife and I have always had a very active and healthy sex life.  So when the CD hit we were not ready for the downturn in activity.  I had a lot of desire but not a lot energy and just like many on here I did not feel clean or in control of my system enough to be romantic.  It is hard to think my wife would find it exciting to make love to a guy who has been usingthe bathroom 20 or 25 times that day.  We went from several times a week to a couple of times a year in flash.

Add to this that just as I started feeling better from taking Tysabri (test market trials) my wife started getting hit real heavy with menopause....so now she was not really feeling "the love". 

So over the years we have had to learn to understand each others feelings and adjust to a less intense fire.  We talk openly about things...if one of us is really in the mood we do certain things to let the other know and many times even when the spirit is willing but the body is weak we still manage to work ourselves slowly into a good time...sometimes it is all about me and other times it is all about her....but mostly is us together.

What we found for us that has worked best is that when we are together...watching TV...sitting on the back patio....or walking the dog...we touch, hug and hold onto each other a lot (we did not do a whole lot of this before)...this helps build desire and enough desire generally surpasses many of the negative issues.

Last thing....if...while enjoying ourselves I get that get up and go urge ...I get up and go.  We don't fret over it...we don't frustrate ourselves by trying to re-create the moment I just ruined...we just, if still interested, start to rebuild the desire and go from there...if the mood is lost for good I am blessed with a women who does not hold a grudge but instead shows understanding and lots of patience.  We may not be back to the hat tricks on a week end....but we ain't doing so bad either....and honestly now. most times, it is more rewarding than in years past.

 


dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
currently on Low Dose Netroxene (started Jan. 19, 2007)...against Dr's wishes, he was pushing for Remicade.  Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose two shots every other week.
Crohns is currently active and has been since April of 2005
51 yrs old


closure
Regular Member


Date Joined Jul 2008
Total Posts : 471
   Posted 8/20/2008 8:20 AM (GMT -7)   
it's nice to hear a guy's point of view. and what you said about when you're together watching tv or whatever is true. the cuddling, holding hands, etc brings you closer together and sometimes does make you more in the mood and less self conscious.

if you have a supportive and understanding partner any attempts you make at being intimate would be appreciated and if you're too sick to try to be intimate they'll understand.

I'm glad you brought this up crohnspatient...it's good to feel not so alone in this.
27 female
 
Bipolar, panic disorder, PTSD, PCOS, hashimoto's disease/hypothyroidism, acid reflux, and in the process of being diagnosed with either crohns, colitis, or even lupus...who knows really! the docs sure don't lol. Now possibly even celiacs disease!Lots of tests coming up so hopefully I'll know more soon. Too many meds to list!


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 8/20/2008 8:42 AM (GMT -7)   
MMMNAVY, I am not sure how buying him a tuba or saxophone or glockenspeil will help. Unless he has some interesting tastes . . .

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6923
   Posted 8/20/2008 8:51 AM (GMT -7)   
lol MikeB I was trying to find a different way of saying something...LOL
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


ddr030505
Regular Member


Date Joined Nov 2007
Total Posts : 68
   Posted 8/20/2008 8:59 AM (GMT -7)   
I know that when i feel crummy I really don't want to .. I know that when I'm in an ok mood my hubby hears be soft.. But honestly 90% of the time I'm not feeling it. He is understanding and although he tries to lightent the mood with joking I still feel guilty alot.. I really miss being able to make him happy like that but he understands and I try and make him happy as much as I can.. You are not alone in the not in the mood group...
23 year old female Diagnosed Sept '03 still fighting for remission
longest break 9mths; meds: Asacol 6-400mg tabs aday, Iron 40mg; just stopped Humira due to a CMV virus which cause liver elevation
Live Laugh Love, Live by this and you can fight anything!!
There are moments in your life that makes you and sets the course of who you're going to be. Sometimes there little, subtle moments. Sometimes, they're big moments you never saw coming. No one ask for their life to change, but it does. It's what you do afterwards that counts. That's when you find out who you are.
 


closure
Regular Member


Date Joined Jul 2008
Total Posts : 471
   Posted 8/20/2008 11:40 AM (GMT -7)   
I was a band geek in school and I've seen people do interesting things with different instruments...you'd be surprised! lol. those band camp stories are usually true.
27 female
 
Bipolar, panic disorder, PTSD, PCOS, hashimoto's disease/hypothyroidism, acid reflux, and in the process of being diagnosed with either crohns, colitis, or even lupus...who knows really! the docs sure don't lol. Now possibly even celiacs disease!Lots of tests coming up so hopefully I'll know more soon. Too many meds to list!


crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 8/20/2008 2:57 PM (GMT -7)   
haha you guys are funny. but yeah thanks everyone for the advice. now im having more of my own problems because i definitely agree with the being close without being sexual but lately ive been turning back into the prednisone monster and driving away all of my loved ones including my boyfriend with my harsh disposition and crabby moody attitudes :-(.. it sees lately like i act like i hate the world, and him, but i dont adn i feel bad the drug makes me such a monster, the past couple days being back on it he's running away from me more than trying to cuddle on the couch hahaha oh well it will pass
diagnosed with Crohns since 2004
Hospitalized often for colon rest and TPN
Have been on 6MP, flagyl, cipro, prednisone, remicade (3 1/2 years).
Currently trying Humira every week.
Just got put back on Prednisone :(! 30 mg/day
Put on Augmentin too

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