Living with urostomy and colostomy

Hi Dorota

I live not far from you and I have a urostomy and colostomy for the same reason-recurrent cervical cancer. I had my surgery almost 2 years ago, and it’s nice to “meet” someone who will know exactly what it’s like, so hello! How are you getting on? It’s a tough recovery process. xx

Hi Sarah,

So nice to hear from you. Often seems like I am the only one with 2 bags, especially in my area.

It's been only 2,5 months but feels like a lifetime, so much happened. Hard times to get used to managing bags. Hard recovery road, but slowly getting better. The first weeks at home were hard, urostomy bags were leaking and felt like a ticking bomb as was so unpredictable. Thanks God a lovely stoma nurse got us a good pouch and adhesive lolly pop so it sticks for good 36 hours.

Now I'm trying to sort out a colostomy as pancaking and pushing a bag open at the top. Taking 2 Laxido a day and recently started eating tinned prunes every day, but comes out still quite hard. I've been struggling with my bowels since last year when I had an operation to remove ovarian cancer and extensive radiotherapy in 2019. My bowels seem to be asleep for 2 days and then get very active giving me painful cramps.

Are you follow a special diet with a colostomy?

I also find it uncomfortable wearing a leg bag with my urostomy when I walk outside. I started wearing at first straps to hold the leg bag but they were getting loose while I was walking outside for longer than10-15 minutes. Then I bought a net to hold it and felt tight and secure while at home, but while outside feeling like sliding down and I'm afraid my leg bag would get disconnected from the pouch causing a mess.

How are you doing with your colostomy? Do you wear a leg bag all the time?

Sorry for the long message. I've been having a lot of anxiety fearing the urine bag would start leaking in public.

I hope you are fully recovered.

Thank you for your warm message.

Dorota

Hi Dorota

It does feel lonely at times, and I don’t know anyone local to me with 2 bags. You are very recently out of surgery, and things definitely do get better as time goes on. I also had a lot of leaking from the urostomy at the beginning, but very rarely now. The adhesive lollipop is the best thing ever-it has made a big difference to me. 

I have never worn a leg bag with my urostomy. Only the bag on my tummy, and I feel very confident with it. Can I ask why it’s necessary for you to wear a leg bag? It was never suggested to me. I go everywhere with the simple bag, even travelling abroad.      

I don’t follow any special diet with my colostomy-but I am careful with nuts. Basically I can eat and drink anything I want to. I do sometimes have issues with pancaking, but I am now using a different type of bag and it is much improved for me.  I have never had to take any laxatives in the last 2 years-sometimes my bowel goes to sleep for a couple of days, but I’m ok with that!   I only wear the bag on my tummy with nothing else. No leg bags at all. 

Recovery took a long time and was very hard, but I’m still glad I had the surgery. My life now seems completely normal, but it took a long time. I hope we can stay in touch-it’s so nice to connect with someone in the same situation. xx

I have just been told I need this operation to have 2 bags and so scared 

Hi Star10473 

I’m sorry you had to find us, but hope we can help you as much as possible. Would you like to share a bit about your story so we can understand what has brought you to the group? I notice you are a member of the cervical cancer group, so perhaps you’d like to make a post in that group to introduce yourself there too. 

It’s always scary to find out you are facing major surgery but if you want to let us know a little about your situation we can do our best to support you. 

Sarah xx

I had cervical cancer in 2000 and had radiotherapy chemotherapy and internal radiation. I was clear of cancer a few years later. End of last year I was getting a bad back had X-rays, ct, mri, ultrasound and told slight authorities. The. I was suffering from spot bleeding and stomach pains leaking from back and front. Had a hystoscopy for biopsy and then told it was cancer but unsure if returning or new cancer. Told I need an mri scan pet scan to see if it has spread if not this radical procedure of removing everything and having 2 bags was not what o was expecting and it’s just so painful I just can’t my head around it. My daughter and family are supported it’s just goin through this and what I have to deal with the rest of my life. 

Hi Star10473 

Thank you for the update-it must have been such a shock for you to get another diagnosis of cancer after being so long clear.

So your doctors still don’t know if it’s a recurrence or a new cancer? It sounds incredible doesn’t it, that this type of operation is required when cervical cancer recurs? I couldn’t believe it when I heard first about the surgery when I literally had a small tumour recurrence of less than a centimetre. 

It will be important to get more scans to understand if the cancer has spread beyond the pelvis first of all. Do you know when those scans are likely to happen? 

It is a massive thought to process all this, but I think before going into that in detail it will be important to know about any spread. Unfortunately if the cancer has spread beyond the pelvis then the surgery won’t be possible so your doctors cannot say until the scan results are available whether or not surgery can go ahead.

For this reason I think it’s better not overload you with information at this stage in case it doesn’t go ahead, and some other treatment is required. 

I had my surgery 4 years ago, so if you do have to have this surgery I hope that might give you some hope.

Sarah xx

Hi Dorota, I only have a Urostomy (nearly 2 years) and have had trouble with adhesion in the past. At first it was because I was allergic to the adhesive so changed bags, spray etc and used  calamine lotion or hydrocortisone scalp lotion for the rash. My stoma nurse suggested a belt too which has helped a lot to hold it in place (on prescription) but the best thing has been to fasten the bag on then hold it with my hand to keep it warm and get the adhesive working well before I move. I have a fitbit with a 2 minute mindfulness programme so I sit there and do my deep breathing while it sticks itself on. Far fewer leaks now.

I use a leg bag - first time to go and see Elton John at the O2,  2 months after my op. It gave me peace of mind especially on public transport - took nearly 2 hours to get there. Since then I used it again on a long walk in London and back by tube this summer. That was ok but in the heat the adhesive did begin to break down. I use stoma pants but because they were a bit loose and the main bag couldn't go into the pocket because of the connector tube it must have rubbed a bit at the bottom of the flange near the top of my leg. I find the Velcro straps ok but did have to retighten them while emptying the leg bag from time to time. I intend to keep using leg bags as needed. Hope these help

I had a pelvic exentaration and I am now left with 2 stoma bags permanently. It’s been tough these past 4 months 

Hi Star10473 

It’s definitely very tough surgery to go through. I remember speaking with ladies in real life who had gone through it and they told me it would take about a year to recover. I thought they were wrong, but they weren’t! 

How are you coping with the two bags or is there anything you are struggling with?

Are you feeling well enough in yourself?

I don’t think anyone can fully understand how life changing a total exenteration is unless they have been through it, and things are very different going forward.

Sarah xx