hi, I am a nurse practitioner finishing my masters. I am trying to write an article regarding ostomies and sexuality. the article willprovide information to all levels of nursing regarding sexuality issues. I would like this article to provide information regarding some of the problems such as: knowing etrerostomal therapists are great sources of information regarding ostomies what information should the regular staff nurse know about sexuality and ostomies. I have heard about ostomy lingerie that fits or hides the pouch, crotcheless panties, tube tops etc. also vaginal dryness and erectile dysfunction can be an issue. I have also researched the different appliances that can be used. Any other ideas? What questions did you want answered? Do you feel the nurse should bring up the topic regading sexuality? (the literature says yes as we discuss bowel and bladder already with ease ). I thought I should cover all the bases and put the questions out there as I only know 2 people with ostomies and have already heard from them.
To be honest, I got most of my information about living with a stoma from message boards like this one. Although the nurse at the hospital was very good about making sure that I didnt go home until I could do a bag change,got the right bag for me etc. Other than that it was then a case of "phone if you have a problem"
I think that more information should be offered "before" someone has the surgery. I feel this is important especialy when Rectum removal is involved. I am female and I wish that someone would have explained about what could happen after surgery with periods, and sex. Because the rectum is no longer there, my womb is now tilted at such an angle that when I get a period it sort of pools in one area and hangs around longer than it should. I can have nothing for hours and then suddenly it gushes(sorry to be graphic)I am actuely on day 16 of a period(not massive amounts now thankgoodness) but I never where I am with my dates anymore. Removal of the rectum has also made it impossable for the Doctor to be able to take a biopsy from me as even with me under a general anesthetic he just could not get past the cervix. Thankfully sex has not been painful or difficult but because of this problem with the way everything has now "shifted" I also have a problem with (shall we say Body fluid) hanging around longer than it should and this concerns me because I worry that I might end up with an infection. Don't get me wrong,I can live with all this, after all, my surgery has given me my life back. But I do wish that someone would have taken the time to explain what "might" happen after surgery. At least then I could have been prepared.
Thanks for the input Sue, the article I am writing will be exactly that, infor that you shopuld discuss with your patient before during and after. I will also let one of my collegues know re the periods, sex and biopsy problems that you have encountered as she is an ET and often sees the patient before the general duty nursse. I guess what I am asking then is should I put int he article that perhaps the patient should discuss with the patient the complications that can arise after surgery as the uterus can shift etc. Was this ever discussed with you? I have read about the dryness that can happen etc. What about regualr paps are they different now as well? Again thanks for getting back to me, I have been reading message boards to get more info and it certainly has helped. Besides this is there any other questions that you felt should have been discussed before or after surgery? Thanks Simone
As it happened,I had a pap test(I call it smear test here in England)just a few months before my surgery. Thankfully it was normal. I realy don't know what is going to happen when I am due for another one because as I mentioned in my above post,the Doctor could not get in there and aparently he tried every which way. I am so glad I was under a general anasthetic. The reason the Doc wanted a biopsy was because I had vaginal bleeding for 7 weeks following rectum removal. In the end it was decided that as the scan and blood tests didnt show anything other than normal that they would leave me alone. And in answer to your question, no I dont remember anyone talking to me about the "shift "of things that would take place with the removal of the rectum. I suppose when I think of it now, it is only common sence that this shift would happen,but at the time I was only thinking of the advantages of getting rid of a diseased rectum so the gyne side of things was the last thing on my mind. A leaflet to explain this side of things would have been good I think
I was thinking, that before my first surgery for the Ileostomy,that the stoma sight might have been discussed a bit more with me. As it happens the nurse marked my stomach just right and I am happy with my stoma position. But I didnt realy give it much thought at the time and I wasnt asked if there was any reason why I would want the stoma higher or lower or whatever. Speaking with different ones over the 3 years since my surgery,I have realised that not everyone would be happy having there stoma sighted in the same place as me. Some people are into sports such as car racing,rock climbing and a number of other things. I think this has to be taken into account when deciding where the stoma will go because the person might need to wear a harness or some other contraption for a sport. Also, it seems that many people I have spoken with have had a problem with leaks from the bag after surgery because the surgeon didnt make the spout of the stoma long enough. The surgeon is probably thinking he is doing the patient a favour by giving them a nice neat and farely flat stoma but in reality this only causes problems for the patient after surgery. Again,I was lucky with this and have no problems but maybe a list of these things would have been good so that the patient can discuss all the options with the surgeon before hand.
I have not been approved for that kind of activity yet, so I can't say much from experience, but I have been on these message boards for quite some time and have heard a lot of people talk about how after surgery they have trouble in the sexuality department: low libido, not feeling sexy, pain or discomfort for females (very common in J-pouch patients!), ED in men....
My sex questions before surgery were pretty basic: - How will the procedure affect my vagina/sexuality/etc? - How long do these effects last? - Is there anything I can do to help avoid/prevent/treat these issues? - How soon after surgery can I have sex? - What percent of patients have permanent issues/problems sexually after surgery? - Anal sex is off the table forever now.... right? - How will my period affect my J-pouch? (When I asked my surgeon she said it wouldn't, but I have read otherwise on these forums.)
What I can say from experience is that when women are engaged in such activities, their abdominal muscles often will automatically tighten up a LOT as part of their response, which can cause a bit of stinging around a fresh stoma if it is still healing.
And I'd just like to add that about three weeks out from my proctocolectomy is when my sex drive finally started to RETURN after being gone so long due to disease and drug side-effects. I was sure glad to see it again. I am now just over a month out; I have noticed no ill-effects in that department (though still just running "solo" - able to maintain arousal, no dryness, etc.), and it is only getting stronger, so... not all the outcomes are bad. You could list increased libido due to returned health as one possible post-op effect. ;-)
I do think the nurse should bring it up first just by asking if the patient has any questions regarding surgical effects on sex/sexuality. Sometimes people have questions but aren't sure how to bring it up or are too shy to ask. It was not discussed by any medical practitioner with me, but I wish it had been.Follow my story: ronnielee-fightingforit.blogspot.com
32-year-old single female (teacher) 10/4/12 - proctocolectomy / J-Pouch construction / loop ileostomy Take-down scheduled December 11th
Dx mild/moderate UC 1995 Dx severe pancolitis 2011
Post Edited (bootstrap) : 11/8/2012 2:38:28 AM (GMT-7)
I think you should make sure your article does not only focus on sexuality issues for heterosexuals. Many nurses (and others) use "sex" as a synonym for heterosexual intercourse, but sexuality is much more broad than that. Depending on the context, many people who are gay/lesbian or otherwise have same-sex partners are not going to feel safe with you unless you make it clear that you are safe.
Suzy that's interesting about shifts in the angle of your vagina -- I've noticed that too. It's a pain when I take a bath or swim, just seems like so much water gets trapped in there.... doesn't seem as extreme as yours, but there are some issues w/blood getting out for my period.... I have had a pap smear since surgery though. Hope someone can figure something out for you....50 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound Sept 2011. All healed up now. Healthier than I ever expected to be again...
Simone. I just couldn't imagine ostomy nurses discussing sexuality issues. ALL of theET nurses I have encountered and that has to be well into the double digits because I am on my fourth ileostomy.. are completely focused on getting an appliance/system to work or solve the current problem I am having with my current appliance/system. I think the hugest thing lacking for me was the complete lack of information from my ostomy nurse BEFORE surgery regarding what an ostomy was. Granted my surgery was emergency.. but there was a meeting in which she came in to speak to me and mark me for my stoma. She could have at bare minimum brought in some ostomy appliances. I mean I had 2days waiting in the hospital from surgery decision to being on the operating table. I think an ET nurse should of spent more than 5minutes with me.
Anyways - suzy.. I am absolutely floored by what you described. As I have been dealing with the EXACT same problem to the EXACT same level you describe since my jpouch excision and back side removal and permanant ileostomy surgery last spring. Basically the vagina is tilted AND part of it bent/curved backward so that fluid sits on a "shelf". This fluid pools in there until it hits a certain volume and then RANDOMLY gushes out in massive volumes. Such massive volumes that pads etc.. won't deal with it.
I too was not warned of any potential gynecological issues; however I was warned in depth about potential urology issues. go figure. I strongly believe that the colorectal surgeons should discuss potential issues in advance - menstrual problems, pain, anatomy changes, sexual pain, and other gynecological things. This is a doctors job, not an ostomy nurses job. They are aware that these problems can happen so it sure would have been nice to know about it. In particular, for me... my jpouch excision and permanant ileostomy surgery was a long hard thought out decision-making process which involved myself, my surgeon's head nurse, my surgeon, and my GI doctor over about a 6month timeframe. At no point in time.. did anyone mention potential gynecological issues.
Anyways... this problem has been so major for me that I have found some "fixes" shall we say. I have been working with a urogynecologist to make this situation more acceptable to live with. First and foremost have you fully been examined for a fistula or any kind of opening in any of the walls of your vagina? This would probably have to be under anesthesia because if it is like my situation they cannot access your vagina in entirety because of the anatomical changes. My urogyn. checked me while I was checked while under anesthesia with my colorectal surgeon to deal with my perianal wound. If there is a fistula some of this fluid could be urinary or peritoneal fluid. This is the first step. Initially I had a fistula - from a massive abscess. So that was attributing to some of the fluid that was pooling. My fistula has now has healed on its own. But that was only part of the problem!
Then she had me douching every few days or so with just a vinegar/water douche. No chemicals. What this does is with the pressure of the douche water pushing up into there, it "backwashes" out the area where the fluid is pooling. It is super gross to do but it cleans out most of the fluid so that it won't gush on its own when you are in the grocery store or in a yoga class or out in a pub. Problem with this though it that you have to do it very often so it was causing irritation if you know what I mean, and I sometimes felt that some of the douche fluid was hanging out a bit up in there.
So most recently, my urogynecologist devised a contraption for me to proactively "suck" out the fluid. Depending on how much fluid is pooling or if it is just pooling on your periods.. kind of will depend how often to use it. For me, I can feel the gross fluid pooled up in there, so I know when I need to do this. Sometimes it is a couple times a day.
She also had me get a Mirena IUD. The goal of this was to reduce my periods, because like you.. they are massive and long just adding to the huge volume of fluids pooling. She could only do this in surgery because my anatomy is so changed. I cannot say whether the mirena has been a success or yet not. I have only had it for about 2months and it has been very painful. Supposedly it takes a while for the mirena to "settle in". But if it works.. it may make this situation entiretly more manageable.
I cannot believe what a relief it is to hear I am not the only one suffering from this supposdely uncommon occurence. I was very disturbed by my colorectal team not taking my newly shifted anatomy problems seriously, but I hunted out a very good urogyn. and she has been able to help me. So hopefully Suzy, some of the tricks I have described may be able to help you too
let me know.
and good luck with your project simone.
liz.
Post Edited (ddd45) : 11/8/2012 7:44:31 AM (GMT-7)
Just FYI, finding the right birth control pill can also help reduce the frequency, duration, and intensity of periods. With the one I'm on right now, I only menstruate once every three months, and even then it only lasts a few days with minimal bleeding and none of the standard symptoms/effects like cramping, bloating, or mood swings. I love it. Could be included as one possible remedy/suggestion for patients who have trouble with their periods being affected.Follow my story: ronnielee-fightingforit.blogspot.com
32-year-old single female (teacher) 10/4/12 - proctocolectomy / J-Pouch construction / loop ileostomy Take-down scheduled December 11th
Dx mild/moderate UC 1995 Dx severe pancolitis 2011
I agree with ddd45. I couldn't imagine the ostomy nurses I had discussing sexuality issues. In my experience, the nurses didn't even provide the information they should have with respect to the ostomy/stoma. They basically put a bag on me, sent me home and said call if you have any issues. The nurses only provided information I asked questions about and since my surgery was emergency I didn't know what to ask. Also, for the 2 weeks I was in the hospital, I barely wanted to look at my stoma or deal with changing the appliance. The nurse's only concern was making sure I could do a bag change on my own before I went home. Intimacy wasn't even close to being on my mind at that point. Other than 1 follow-up appointment a week later, the 2 weeks I spent in the hospital was the only contact I had with the ostomy nurses.
Most of what I learned and all of the support I got were from the people on this site.05/17/12 - Bowel resection to remove endometriosis 05/25/12 - Emergency surgery due to leak in join resulted in temporary ileostomy Reversal planned for Fall 2012
Suzy - count me in your group too! Last time I was in the hospital they sent GYN down to examine me b/c part of my problems were a brown/blackish vaginal discharge. No odor at all. Scared the bajeesus out of me as I immediately thought fistula. Anyway, she had a HELL OF A TIME with the speculum the first time and I was in SO much pain from it. She stopped and went for a manual exam first and popped her head up to say "OH That is why it was so painful - it's like a roller coaster in here!" All my 'lady parts' had tilted backwards :( Turns out I had bacterial vaginosis and the pooling of stuff TOTALLY makes sense as to why/how it happened! I haven't had intercourse since before my surgery (Dec '11) and ugh that just makes me feel horrible. My husband was so afraid to touch me for so long and then when he was over the fear and I was feeling up to it he started having issues :( We are striking out all over the place.Melissa Dx Crohn's disease 2003 Hospitalizations to numerous to list Prednisone, Rowasa, Pentasa, 6MP, Remicade, Asacol, Humira, Imuran, Flagyl, Cipro Total proctocolectomy with end ileostomy 12/15/2012 Currently battling peristomal Pyoderma Gangrenosum, tx topical steroid ointment, silver powder, aquacel AG dressing and back on Humira
Wow - I had no idea that was such a possible issue/complication! I've never heard of it before this particular thread. If it is happening to more than just a couple women, then it is definitely something that female patients should be aware of so they can watch out for it or know that it's a possibility if they have similar issues at home or during exams. I would freak if that kind of stuff started happening and I had no idea what was going on. Thanks for the heads up, Ladies. That's why these forums are golden.Follow my story: ronnielee-fightingforit.blogspot.com
32-year-old single female (teacher) 10/4/12 - proctocolectomy / J-Pouch construction / loop ileostomy Take-down scheduled December 11th
Dx mild/moderate UC 1995 Dx severe pancolitis 2011
melissa.. that's EXACTLY how the fluid issue first started for me. brown, black, gray fluid GUSHING out about 2months after my original surgery. And I mean gushing. Lets just say when I went to my PCP's office they had to mop the floor after she tried to check me out. GROSS. anyways... hopefully some of the methods my urogyn figured out for me will help you. and to whomever posted above.. the mirena IUD is a form of birth control which is approved to reduce menstrual periods. The hormonal "whole body" impact of it is supposed to be substantially less than oral birth control pills.
I had really bad gushing after my original surgery, but I thought it was because I didn't get my period for a few months.... I am perimenopausal too, and that can happen (happened before surgery)... also I couldn't sit at all then, so trying to deal w/my period standing was unpleasant and involved much floor cleaning....it did quiet down some, but I get it sometimes still, very annoying (I stained the couch once just sitting on it, through my pants etc, yuck!). I can't really sort out what is from surgery and what isn't, and I'm sorry to hear what you both have gone through.... but helpful to know that's a factor....50 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound Sept 2011. All healed up now. Healthier than I ever expected to be again...
Liz, yes oh my gosh! The greyish too! I was having lower rt quad pain with it so my surgeon was FREAKED OUT! She actually admitted me without even seeing me in the office - I showed up at the hospital and BOOM I was in a room. She doesn't screw around with me since I am always having some weird stuff happen. I have noticed that if I lean to the left when I am on the toilet (emptyping pouch or whatever) and it is close to my period stuff will gush out - like I am putting pressure on a certain spot and it is forcing things out. Huh, weird. I'm definitely bringing this up the next time I see my GI or surgeon or both to see what they think. I suppose I should get up with the GYN people and go over this info - I guess they don't deal with people's shifting insides much?
I wish birth control was an option for me but I developed a blood clot the last time I took any so NO ONE will prescribe for me. THe GYN actually suggested a hysterectomy which I am all for - my surgeon however is not, not right now or in the immediate future at least.Melissa Dx Crohn's disease 2003 Hospitalizations to numerous to list Prednisone, Rowasa, Pentasa, 6MP, Remicade, Asacol, Humira, Imuran, Flagyl, Cipro Total proctocolectomy with end ileostomy 12/15/2012 Currently battling peristomal Pyoderma Gangrenosum, tx topical steroid ointment, silver powder, aquacel AG dressing and back on Humira
melissa - yes sometimes you can get things "untilted" should I saw with "toilet gymnastics". That was my first attempt, trying to change physical positioning to get stuff out so it wouldn't randomnly gush.
If the mirena doesn't work out for me.. its hysterctomy time. But because I've had so many colorectal surgeries.. my urogyn does not want to do it. She cannot do a vaginal hysterctomy because my anatomy is so messed up. So if its done, she has stated my colorectal surgeon must be there. I consulted with him on it and he said its not really a big deal colorectally that all he was going to do was "lift up and hold the bowel" for her. needless to say that kind of freaked me out.
This is so helpful I can't begin to tell you!!!!!! I have been having issues ever since surgery. I finally got into a urinologist after a year and that didn't even come close to helping. Now that I know what the problem reallly is and why life just might get better. AThey kept telling me it just needed to be stretched out?!??!Those things we keep trying to do get easier not because the feat gets easier but our ability to "do" gets better. Thyroid cancer removed 1988 Stomach problems finally figured out 2001 Crohn's/Colitus Tried every drug without much success Colon/rectal cancer removed Aug 2009 6 Grown kids, grandkids and a great husband to keep me busy
Even though I totally commandered Simone's post... I want to thank her for getting us talking. I am truly floored as to how many of just the few on this board are having the same issue. I am very very fortunate that I had the energy and determination to find a good understanding urogynecologist (the first one I found was useless - maybe because he was a male and thought it was no big deal!) that figured it out and understood that living like that was simply not acceptable. Though its unfortunate that so many of you are having the same problem, it really does make me feel better that I am not alone in suffering. Please anyone.. if you want more detail on what my urogyn has figured out for me in order to manage this issue.. let me know.
Thank you so much for your posting and yes its great information from everyone. i know when i had my ileostomy a little of a year ago, following surgery the nurses seemed scared 2 deal with me or my questions. if it wasn't for my husband being so amazing it would have made the transition a more difficult one. So thank you everyone for your honesty.
Thanks Pluto for finding this thread for me. It definitely fits my situation! Guess I'll print it out and bring to my GYN appointment...wonder if she'll be able to get up there now after reading all this!Diagnosed with UC, July 2010 proctocolectomy with end ileostomy, Sept 2012 Anal stump removed due to complications, Dec 2013 Bye Bye UC!