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Lack of sex drive (Anyone else? Med Related?)

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Lack of sex drive (Anyone else? Med Related?)  
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Posted 10/11/2007 5:15 PM (GMT -7)
Good evening...

I'm hoping to get some honest feedback from others diagnosed with UC and on medications. Within the past 6 months I feel I'm spiraling into a lackluster life. I'm 28 years old and in a committed relationship. Recently, I have been experiencing new symptoms related to my UC - joint pain and nauseasness. I take 4x3 Asacol, Lipitor, Fish Oil Caps, Iron Supp, Nexium, Birth Control Pill and Women's One A Day Vitamin.

I have no desire to be intimate for fear of feeling sick the next day due to my joints or cramping because of the pressure during intercourse. I'm always tired and don't know if this is related to my meds (my anemia is under control). It's hard to explain to your partner, I feel exhausted, in pain or weak - EVERY NIGHT. But it's true. He's beginning to feel helpless because there's nothing he can do to make me feel better.

Please tell me I'm not the only one...Any advice?

I'm trying to find a support group for us in our area (Elkhart, Indiana) But so far, no luck. It would be great if there were other couples to talk to.

~Aubrey

UC Diagnosed Nov 2006

Anemia Nov 2006

 

Posted 10/11/2007 6:40 PM (GMT -7)
Yes I'm in the same situation exactly.  I'm trying some herbal drugs (testo-jack for males) which seems to help a little bit, but not exactly sure why my labido is almost nonexistant at times.  It's the pain sometimes, cramping others, and probably meds too.  You're not alone, that's for sure.

---Nathan---  31 yr old male

Diagnosed May 2006 w/severe UC

Currently in mild/moderate flare

2 400mg Asacol 4X day

20 mg Prednisone

1 multivitamin/day

2 grams calcium/day

75mg Imuran/day

100mg Tramadol/day for abdominal pain (as needed)

1 Fioricet ever 4 hrs as needed for severe migraines

Posted 10/11/2007 7:28 PM (GMT -7)
I've experienced the same thing. Especially when I was really sick. I had some major joint pain for a few days before I started prednisone. It did not come back when I got off prednisone.
Unfortunately my sex drive has never really come back all the way either. It's better than it was, but by evening I'm usually really tired and just want to sleep.
I read somewhere that people with IBD should get about 10 hours of sleep at night, and I really think that's true for me.
Sorry I can't help with the main issue, but you should talk to your GI about the joint pain. That can be a symptom of UC and perhaps a quick run of Prednisone could take care of it.
James
Current Meds www.myspace.com/gardenerjames

Asacol 4 tabs 2x daily
Forvia once a day
Probiotic twice daily
Methotrexate 3 pills once a week
Actonel once a week
Calcium supp.
Omega-3 once daily
Eighth Remicade infusion End of August

Posted 10/12/2007 7:08 AM (GMT -7)
I have this problem too. Of course its worse when i have symptoms but my sex drive is nothing like it use to be. Now i make a conscience effort when i am feeling ok to make the first move on my husband. My husband and i talk very openly about postitions that aren't too stressful on my body and other things we can do that don't put as much pressure on my body...wink wink....

There were a few MONTHS when my husband had to be very patient becuase i was just too sick to do anything. He was great. I never felt as though i was any less of a wife.

It is hard. I am constantly aware of my husbands needs. I don't want to sound like i am doing things I don't want to do...i'm not... but i realize that i don't think about sex at all so i try to plan ahead or take advantage of those times when I am feeling better.

Really talking about it with my husband is the best thing I did. It releived a lot of tesion.

Good luck!
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, Rowasa every other night, 15 mg pred. until immuran kicks in...
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07
Prontonix once daily for acid reflux, zofran twice daily for nausea

Posted 10/12/2007 7:10 AM (GMT -7)
I can identify. And as fairly newlywed, the drop in sex drive is not good. I feel guilty, which makes it worse. Alot of times, I'm just too tired and/or I don't feel attractive since I've been flaring and lost weight and muscletone.


On the upside, I try to initiate "relations" on weekend afternoons when we're both home and I have more energy and enthusiasm for it. My hubby's a night owl; I'm an early bird... so that makes things difficult, too.
Diagnosed with ulcerative colitis spring 1999

C-scope confirmed UC diagnosis 9/18/2007

No explanation for right side pain and thickening of bowel wall

 

Maintenance dose sulfasalazine, back on a pred taper for first flare in years

Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.

Posted 10/12/2007 2:12 PM (GMT -7)
I love Grooviegirl very much! She is an inspiration as all of you are! I appreciate all the feedback that you have given her! We are a couple that needs each other in life and obviously want to get as close to normal as possible. In other words, we just want to have sex with each other at times but UC has decided to intervene. We shall overcome and thanks again!
Posted 10/12/2007 4:24 PM (GMT -7)
I'm with you ... constantly tired, nauseous, achy ... my husband is EXTREMELY patient. Aside from those symptoms, I just don't feel "sexy" when in the back of my mind is the possibility that I'll crap the bed. I feel like I've aged a decade in the 18 mos since my diagnosis.

It won't always be like this though, the illness is cyclical and when you are in remission you'll recover your sex drive. The most important thing to do is to try not to stress about it because the more you stress about anything the worse your symptoms will be.
Diagnosed UC April 27, 2006

Remicade: 1st infusion 7/21/07; 2nd infusion 8/18/07

Lialda, 4 tabs in the morning; Protonix; Prednisone 4/27/06-present, holding taper at alternating 5/0 mg; Xanax; Lexipro, Rowesa; Asacol; Colazal three 750 mg capsules 3X day;

[2/22/07 started Imuran, off within two weeks due to bad reaction]

Posted 10/12/2007 9:13 PM (GMT -7)
Saw your post. I posted this below under topic--Sex, what's that?:

Posted 9/22/2007 12:58 PM (GMT -6)
Yeah, just don't feel like it anymore--too much fatigue, too tired, face it, diarrhea is not sexy--lol. I am totally o.k. w/not feeling sexual right now, but I'm concerned b/c I have a long term partner, who is very sympathetic to my situation, but still, I feel bad. This is NOT a medication thing, or a libido thing, it's a dealing with chronic illness thing. Can you relate? Oh, yeah, we are very affectionate, kissy, kissy, hugs, etc., And, yes, we've talked about it, but still my partner's very healthy, fit and "normal" physically--you know what I mean.

Not many responses. Mostly people telling me I will get back my sex drive when I'm in remission; not sure people got what I was trying to say, I'm coming from a chronic illness thing. I've had UC over 10 years (IBS longer) and remission? Yah, I have periods of less activity, but pretty much every day is a challenge with one thing or another. I also don't always want to be the "sick" partner, I don't think it's fair and I don't want our relationship to revolve around my illnesses--so I do my best to keep my spirits up, or not talk/focus on it all the time and that in itself is work too.

I would love to have a support group in my community too (I've looked, nothing), the internet is great and all, but their's nothing like live feedback, seeing empathy in another person's eyes/face/body language.
Dx Ulcerative Colitis 1999; IBS; CP: Asacol x3 x3/day, Rowasa, Proctofoam, Prilosec, Bentyl, Prozac, Endocet (as needed), multi vit, probiotic, fish oil caps x2/day, calcium 1200 mg./day, Prednisone (off/on, unfortunately).

Posted 10/14/2007 9:37 AM (GMT -7)
I think when I was flaring so badly, the fear of an accident during sex just wiped out any interest for me. Now that isn't a real concern, but yeah, I'm not as needy in that area as I used to be. I think my experiences with UC have altered my brain somehow. I also got in the habit of waking up at the slightest feeling of pressure, and it finally got to the point that I just couldn't go to sleep if I was going to need to use the bathroom within the next hour or so. The urgency is gone, but the sleeping problems still are with me. If I don't go to sleep when I go to bed, there's a really good chance it's because I'm going to go soon. I also still flinch every time I cough or sneeze, worrying about leaking.

Judy

 

Left-sided UC diagnosed 2001.  Taking Colazal and Imuran, Remicade infusions and moving into remission. Finally off steroids after four years! 

 

Now in remission for almost two years. Remicade has been my wonder drug.

 

"If you spend your time second-guessing your past decisions, you'll never have time to enjoy today."


Posted 10/15/2007 7:19 AM (GMT -7)
Prednisone turns me into a sexual beast.
Male 36yrs old. Indeterminate Colitis 6 yrs.


Lialda 2 a day

Protonix
multi vitamin

Posted 10/15/2007 7:16 PM (GMT -7)
Dirk - so glad to see you here! There are so many other "significant others" who don't seem to give a darn - and don't try. Cheers to you!
Pan-colitis and GERD diagnosed May 2003

Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed

Aciphex, Effexor XR, BCP, Rhinocort nasal spray

Culturelle, Biotin, Folic Acid, Forvia, Calcium, and B12

 

Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.

Co-Mod for the UC forum

Keep HealingWell running smoothly:  www.healingwell.com/donate

Posted 10/15/2007 8:12 PM (GMT -7)

UCreallySUCKS said...
Yes I'm in the same situation exactly. I'm trying some herbal drugs (testo-jack for males) which seems to help a little bit, but not exactly sure why my labido is almost nonexistant at times. It's the pain sometimes, cramping others, and probably meds too. You're not alone, that's for sure.

I know both the disease and the meds affect my hubby. He said he asked his doc about having zero libido at times, and the doc said it's probably due to the Imuran. We've had a lot of ups and downs with this disease, especially since Feb of this year, since he hasn't been able to stay in remission without the prednisone. You enjoy the good times, and you hang tough together through the rough times.

This board really helps - it's nice to be able to talk about this stuff with others, and read that we're not the only ones going through all the stuff UC throws at ya!
Husband diagnosed with ulcerative colitis in 2003(?)
Hospitalized 4 times
Asacol, Imuran, probiotics, fish oil, Vit D, Librax, Zoloft, Metamucil
Started Digestive Advantage Colitis formula 7/16 - hoping for some relief!
(Still working on listing all his meds and doses of each!)

Posted 10/15/2007 8:42 PM (GMT -7)

Harpo said...
Prednisone turns me into a sexual beast.

LOL! I think that was the funniest thing I've read all day. Thanks.
23 years old
Diagnosed with UC March 2007
Current inflamation in the rectum
Asacol 4 tablets 3x/day

Rowasa (generic) - nightly

Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; experimenting w/fiber supplements (Metamucil and Fiber Choice); Viactiv (Calcium and Vit. D) for Osteopenia; ground flaxseed

Posted 10/16/2007 5:59 AM (GMT -7)
Odd...Prednisone seemed to have an opposite effect on me.

I recently had a tumor removed from my pituitary gland...it was a hormone producing tumor and my testosterone levels were extremely low, and prolactin very high - i was a dude ready to lactate!!
Anyway - my sex drive was non-existent. Soon after the surgery (thats a story in itself) and some recovery time, my sex drive was VERY strong....up until this flare - now that I am on prednisone, it has dropped...not as bad as with the tumor - but it has definitely dropped.
33 yr old male. UC for 13 years. Recent Endonasal surgery to remove non-cancerous hormone producing tumor on pituitary gland.

Posted 10/16/2007 6:08 AM (GMT -7)
I guess this affects me also, I always want to make sure that I took a shower just before, and I always try not to eat much that day...... Like it can never just be on spur of the moment.........

Diagonsed with UC in about 99 - 

Started new GI 9-25-07

Lialda 2.4 in AM(started 9-26-07) canasa 1000mg  2xs per day(started 9-26-07)
Probiotics, calcium with Vitamin D, slow release Iron, Psyllium Husk Fiber. 

Posted 10/16/2007 6:28 AM (GMT -7)
At the beginning of our relationship I was in a remission period. I was vibrant, out going, confident and sexual...now I don't even think about it most of the time. I know it's been very rough on him because he doesn't understand the difference between when we met and now. This is my first major flare since we've been together and I know he's in the learning process of UC. I try to explain to him it's not him...nor is it that I'm less attracted to him from when we first met....it's not those things at all!
~Aubrey

UC - Diagnosed Nov 2006

Anemic - Diagnosed Nov 2006

~~~~~~~~~~~~~~~~~~

Asacol 400mg 3x3

Iron Supp 325mg x 1

Fish Oil Caps x 4

Birth Control x 1

Lipitor 10mg x 1

Nexium 40mg x 2

Women's One a Day x 1

Posted 10/16/2007 6:29 AM (GMT -7)
mbx5...seems like prednisone did the same thing to me.  though it gives me alot of energy, doesn't do anything for the sex drive

---Nathan---  31 yr old male

Diagnosed May 2006 w/severe UC

Currently in mild/moderate flare

2 400mg Asacol 4X day

20 mg Prednisone

1 multivitamin/day

2 grams calcium/day

75mg Imuran/day

100mg Tramadol/day for abdominal pain (as needed)

1 Fioricet ever 4 hrs as needed for severe migraines

Posted 10/16/2007 9:06 AM (GMT -7)
yeah, crampy diarreah 10-20 times a day, just does not get me all hot and bothered for my husband. He is very understanding and I can't wait to start feeling better.....darn UC is ruining my mojo!
Beth, 32

UC Diagnosed March 2000

Imuran 100mg 1xday;Remicade tests pending;Hydrocortisone enemas 1xday;Lialda 2.4mg 1xday since 8/24/07 ;prev. Asacol 4800mg day

Calcium and Vit D 500mg 3xday.

Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007

Prednisone 60mg 1xday, Simvastatin 20mg 1xday, Diovan 80mg 1xday. Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.

Posted 10/16/2007 5:24 PM (GMT -7)
You know it has been true for me...but it started first because I was very ill, and the last thing on my mind was sex when I was really sick.  Then it became a chronic disease and I found my body morphing into a pred based balloon - and the last thing I wanted to do was undress or look in the mirror no less inflict myself on my beautiful wife.  Then it became diabetes and loss of my walking/legs due to diabteic osteoporosis.

Now the good news - My wife has been the most living person in the world.  She has been extremely romantic and intimate - without necessarily having sex.  Yet of late, I have been more fulfilled.  Cuddling with a shared blanket in front of the fire.  Reading to each other, holding each other...to me that is real intimacy.

Perhaps it is me being 49, perhaps my wife is a saint...I am not sure.  We are in the mood occasaionally, but we find so many other ways to share ourselves with each other.

Love to everyone here,

bob 

Posted 10/30/2007 9:39 AM (GMT -7)
Hi,

Hate to tell you, but it might be the birth control pills. I'm on sulfasalazine, and, while I've never been able to get my doctor (or my gyno) to put this together, I think there's something about the vitamin deficiencies of UC, plus medication, plus the vitamin deficiencies/horminal weirdness that birth control pills can cause, that make for a bad, libido-killing combination (sorry to be so general about this, but I don't want to give wrong medical info -- you can google about the Pill and low sex drive and will find a host of resources). I went off the Pill about 10 months ago, and it's helped the situation a lot.
Posted 10/30/2007 3:45 PM (GMT -7)
I'm almost a senior copy of Judy.  Until recently, I was too embarrassed to engage in any sexual activities for fear of an accident or really unromantic GAS.  I don't remember prednisone making me feel very interested in sex.  It made me feel like I was jittery and jumpin gout of my skin, and, oh,  fat.

Now, for the first time in almost 3 years, I am back to myself.  Maybe, I should start beating the bushes for any available male over 40.  Hope I can remember how to behave! devil

  • LINDA

         

Prescriptions: Lialda (on a study) asacol, hycosamine, protonix, synthroid, zyrtec, avalide, nasocort, Miacalcin spray and Trazadone for sleep.

OTCs:  Usana multivitamins and multiminerals, Usana Procosa, Usana Mega Antioxidants, Omega 3, Vit. E,  Healthy trinity probiotics, Calcium Citrate


Posted 10/30/2007 4:40 PM (GMT -7)
I am having the same problem with my 2nd flare (which was a big one).  Feels like i have no special purpose at all, its like a little turtle hiding in its shell. Of course hershey squirts with extreme stomach cramps really dont make me feel all sexy. Flare ups are the worst. My wife is getting a little worried but luckly she is very understanding. Im hoping that when i start working out again i can get the juices flowing otherwise i have to take some testosterone increasing formula or get a vigra prescription.
Posted 10/31/2007 6:46 AM (GMT -7)
I have had this disease for 11 years. Have had problems with libido for the last 3 or 4 years - not sure if it is entirely UC related - I am post-menopausal too. I have a wonderful husband and though he isn't as informed about this disease as I would like, he is very understanding. I think those partners who are supportive and understanding need to be recognized. It can't be easy living with us and in a society where divorce is common, these partners are hangin' in there! Have any of you tried going to a motel? I couldn't think of a birthday present for my husband so I booked a room in a nearby motel for the night. Just the change of scenery helped me feel more "frisky"! I couldn't have chosen a better present for him!
left-sided colitis diagnosed after 3rd pregnancy 11 years ago: was in remission for 5 years

Current UC Meds:  12 Asacol per day

                          1 Rowasa enema at night

Other Meds:  Lipitor, Multi-vitamin, asadophilus, cinnamon capsules

 

In a flare since the middle of April

Posted 10/31/2007 9:21 AM (GMT -7)

Before uc, I was a stud muffin; now I'm a muffin without the stud.

sad
Diagnosed with Ulcerative Colitis January 2007

Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil

Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily

Carrot & Garlic supplements (natural anti-fungal) x2 daily

Posted 10/31/2007 10:11 AM (GMT -7)
Some of these post really made me chuckle:) I am in the same boat though--Since this all happened for me Sept 17 on...I have had no interest. We have been together like 2-3 times:( I know it takes a toll on him, and he is not half as understanding about the disease. He told me yesterday that alot is in my head and I need to not think about it to get better...go figure (he treats me like a child here lately anyway- he is 17 years older than I am ) but I am trying to hang right now:) hopefully I will feel better soon!! Hugs to all!
Terri
Terri D.

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