Post-Op Urostomy - Pain, Intimacy, Exercise, Clothing - Seeking Advice

Surgery: 30 August 2019
I was diagnosed with bladder cancer in 2013 and since then have had numerous treatments and also numerous biopsies too. It was discussed about bladder removal three or four years ago, but due to an argument I had with the doctors being that I would let them take the bladder but believed that due to the cancer not have spread to leave the reproductive organs as my husband and I would like to try for a child. I got told that is not possible there so they never did it and went for another opinion and was on a lot of medicines mostly natural and it seemed that the cancer went into remission. Great, then we immigrated to the Netherlands. It was mostly fine for most of the time until almost a year in got some pains and after checking and numerous infections went to the specialist urologist and decided no more medicine is possible. But they did mention to me that they can look into not removing the reproductive organs if no cancer had spread. After doing numerous scans and tests, it was shown that the organs all good and also did check on eggs and also good so far.
So the operation happened.
It is a life changer in a good and bad way.
I have to try and learn to love myself with this bag and stoma on my body. My husband loves me still which is the most important. Also, I get to live life with no cancer inside me.
So now after this my question is.....
I have aches and pains around the stoma after surgery and inside it has like a pulling feeling. Does that feeling loosen up and how long does it take? Also, when the operation was done, I know there was mention of the lymph nodes in the groin area being removed. There is feeling there but sometimes like tight muscles and other times half numb. Does the feeling come back completely and if so, how long? Also, does the tight pulling feeling go away and how long? Are there any exercises or things that can help with losing the muscles and area there for more comfort?
Also, my hip and well mostly my whole right side that was always the stronger side to a point, is sore and uncomfortable. Also, my back is sore and I know they mentioned the pain would be there due to kidneys. How long does that take to feel comfortable?
Also, from anyone who has, how long after surgery did you get intimate with your husband/wife/partner and what can I expect to feel or not feel? Has there been any ladies that have fallen pregnant with a stoma (urostomy) more so and was it risky, successful, etc.? Any news would be greatly appreciated.
Currently, I am doing walking when I can and weather allows more so. But I have also started trying to cycle short distances, like to the store and slowly. Any physio advice from anyone as well, please.

Also, some advice on support belts and covers.

Hello jessiej.  You do not mention when your surgery took place but I am assuming by the rest of what you say that it was fairly recent. The first thing that I would say is that I'd be inclined to go back to the surgeon to find out exactly what he/she did so that you know where surgery took place and where the organs were left intact. This information will give you a good idea as to where the scar tissue will be and it is probably this (in its healing phase) that is causing a lot of your discomfort tightness, numbness and pain. Talking to the medics would also give you the opportuntiy of asking about remedies for you discomfort and requesting an exercise regime.

It is good that you are finding exercises to do for yourself like walking and cycling but it is even more important to develop an exercise routine which will be specific to the needs of your healing body and particularly the scar tissue. Sometimes this can be helped by taking advice from someone like a physiotherapist who specialises in our sort of problems. If not, then work out what areas are troubling you and try to figure out what exercises might affect those parts. Alternatively, if you look on a site for heart attacks, they have a general exercise regime which more or less covers everything ( speaking from experience!) and only takes less than an hour each day. 

As for support belts, it really depends on what you want from these devices. I have tried many of them and there are subtle differences which only practical testing will tell whether they will suit you.  Presently, I use a CUI hernia belt and an overbelt  which I made up myself because nothing else seemed to work for me. 

I hope you get plenty of replies to your post  and best of luck finding your own solutions.

Best wishes

Bill

Hi Bill,

Thank you so much for the reply and advice. Yes, the surgery was recent as per my header being 30 August 2019. I am going to the doctor on 22 October and will ask all that you mentioned and have noted questions.

Hope you are also well and have a wonderful day further.

Regards,

Jessie

Hi Jessie,

Let me first say that it is clear you are going through hell and back and that you are a brave woman with a healthy attitude. A good attitude is a great start to getting through this medical nightmare. In addition, your husband is wonderful. It is obvious that he truly loves you. Surgery should not change his love and support. And yes, intimacy is possible with a bag. There are many ways to keep it out of sight. Ostomy Secrets has many items that can be worn during intimate moments, but you can be creative with some less expensive items. (I think a garter belt might do a fine job of hiding the bag). What I found to be most important was ordering the correct bag. In my case, it is an ostomy bag, but I am sure there are products to suit your situation as well. When you call to order your supplies, make sure you ask for bags that are not transparent so that the contents are not visible. Hollister actually makes bags specifically for this purpose. This alone helped me to feel better about the bag. I know you are overwhelmed right now, but it might help to know that all of us on this site have made it through similar situations and are here to support you. I wish you speedy healing and continued support. Stay well!

Maria

Hello, Jessie! First, I want to commend your attitude - a positive attitude will make everything heal faster (and I mean that literally and physically - it's been proven). The love and care from your husband will also go a long way to helping you accept yourself and your new companion. My husband has been a rock throughout my ordeal, and I frankly could not have done it without him. Next, give yourself time to heal and be gentle with your exercise until you do. Walking and biking are excellent ones you have chosen because they don't put a lot of stress on the surgery sites. Do talk to your doctor about a hernia support belt, and wear it when you get ready to do ANY exercises which will put stress on the surgery site and core abdominal muscles. I didn't take my own advice because I didn't like the feel of the one I got, and I am SO sorry now, because I have a HUGE hernia and now the belt doesn't even fit anymore.

Be aware that the healing process is not a smooth curve, and you will have ups and downs where it seems like you are losing ground instead of getting better. Hang in there and keep up your positive attitude through these periods - it's hard to see while you are in it, but looking back over 2 or 3 years, you can really see the incredible progress you will have made by that time.

As far as intimacy goes, there are lots of ways to camouflage the bag and appliance and still look sexy. I think someone mentioned the OstomySecrets site (I've heard a lot of good things about them), and you can also try sexy lingerie that covers that area, or try wrapping a long scarf around your middle for that sexy pirate look. Be bold and playful, and your loving husband will be pleased to play along. Okay, graphic language time: keep an eye on your vaginal cavity size. Sometimes cancer treatments or surgery if it is close to that area can cause scar tissue to form that can make intercourse painful. If that happens, talk to a gynecological oncologist who can help with treatments. It can be treated successfully, often by non-invasive means, so you can fully enjoy intimacy with your husband, and continue on to have children (although they may be C-section instead of vaginal birth). As to when to resume intimacy, your body will let you know as it starts to heal - and there's lots of things that the two of you can enjoy even now, well before you can go all the way with full intimacy.

Good luck and best of luck to both of you!

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister