Today we have the amazing Kathy Cathcart joining us who is nearly 70 and lives in Devon. Cathy has been really supportive and has always supported my blog which I really appreciate. Kathy has been through so much so please read on to find more about Kathy's story:
- Can you tell me a little about how you got your urostomy?
I had an intense pain in my lower pelvic region mainly on the left side for around 20 months before talking to my GP about it. Pain was every day but at different times with no obvious pattern to it. The GP sent me for a CT scan in December 2014 and on 2nd January 2015, he told me I had a soft tissue mass in my pelvic region. MRI and ultrasound scans followed and I went for a biopsy which wasn’t completed because the gynaecology surgeon was worried it was too close to the bowel. In his professional experience, he believed it was scar tissue from previous surgery using the Avulta Mesh to repair my bowel prolapse. Two months later this arrogant surgeon sent my file back to the colorectal consultant who had asked for the biopsy. A different colorectal surgeon immediately asked me to come to see him and said he felt we needed to achieve a biopsy to close this down definitely. A biopsy was achieved via ultrasound and colonoscopy and eventually I was diagnosed with endometrial cancer. This was very unusual as I had a total hysterectomy twenty years previously. The solution to my cancer was a total pelvic exenteration removing part of the bowel, rectum, bladder and vagina along with the cancerous mass. I was fit and healthy mid-sixties then and the daily pain had almost stopped once my cancer was confirmed and I was told to stop taking HRT immediately (this had been feeding the cancer apparently). No evidence of endometriosis had been picked up when I had the hysterectomy. I didn’t really take in the words of my surgeons when first talking about my surgery and definitely didn’t hear that the vagina would be lost. I knew I could end up with two stomas as they marked me up for both but I remember saying before that I hoped they could save my bladder. They didn’t and I was in ICU for 4 days and hospital for three weeks as I caught pneumonia postoperatively. I felt very bitter about the extent of this surgery and at the time I wished I had been left to live with the cancer. On the plus side, so much had been removed that I didn’t require chemo or radiotherapy.
- What do you feel is the toughest thing to deal with when living with a urostomy and how do you overcome this?
The toughest thing to deal with is the thought that I have these bags for life now. Specifically, my urostomy has prolapsed below the muscle wall so I can get a sizable bump around the stoma which can ache and if prodded sounds like a hot water bottle being moved. I am told that secondary surgery on the urostomy is not advised unless it is an emergency as it is difficult to improve so I am stuck with it. My urine is acidic and I find it eats away at the adhesive within hours so therefore I always change my pouch before going out socially around midday and every night before my bath. So if leaving the house that is 2 bags a day but before I had this routine I had frequent leaks in embarrassing situations. I have the Coloplast overnight bag tubing plumbed into the passenger side of our cars so I can plug in for long journeys where the tube goes out through car floor pan.
- What piece of advice, hints or tips would you give to anybody who is about to have urostomy surgery and start this journey?
Make sure the stoma is put in a right position for your clothing waistline. Test different bag adhesives in advance of surgery. I tried out ten different manufacturers and was allergic to most of them. Understand how your quality of life will be improved by losing your bladder...or in fact life will be saved.
- Are there any support groups, associations or online groups that have helped you live and accept your urostomy?
I am a member of the Urostomy Association Network Online, Double Baggers Support Group and Making Ostomies Cool. Realising why so many people have ostomies as a result of long-term serious medical problems which have been cramping their lives and the freedom they achieve with their stomas, has helped me to come to terms with my relative good fortune.
- Do you feel there is a different level of awareness with the Healthcare Professionals regarding urostomies compared to the other stoma types?
I definitely think urostomates are the poor relations as far as Health Professionals are concerned. I notice when applying for samples from manufacturers that they exclude double baggers totally. If one clicked the box against more than one stoma type their systems cancel the former click. So you can’t ask for samples for both stomas in one action. Frustrating
- How do you feel we can raise awareness for urostomies within the general public?
I think the general public needs to be made aware of stomas, period. The types of stomas should all be mentioned in any awareness programme but not specifically for urostomies alone. I do think Colostomy UK seems to be much more out there talking to supermarkets about disabilities (not all being obvious). Maybe there could be a joint initiative here.
- When you are having a down day what one thing do you do to keep positive that you find helps?
I can feel very down if when I have been gardening and my bulge over my prolapse seems to be very prominent which can be difficult bending over. However, when I get dressed up I realise I look as good as any lady my age and if I read the posts on the various websites I realise I am so lucky compared to the majority of folk writing in for support.
Wow, Kathy, that was an eye opener, thank you so much for sharing! I loved the tip for the car and the night bag...how inventive. You continue to push through and support others which is so good to see. When I started the 'Double Bagger Support Group' I had no idea we would reach 300 members in our first year but also that everybody that have had pelvic extenuation have a place to go for support.
Please join us next week where we have Jeff Kamm joining us :)