My life experience with a Stoma

NAMAN JAIN
Mar 29
14 min read

Disclaimer: This article is based on my own personal experience as an Urostomy patient. Any detailed and authentic advice and guidelines have to be followed as per the instructions of your doctor/ surgeon and/or qualified ET-Enterostomal Nurse . This article is mainly written with an objective of providing confidence to other Ostomates as how they can lead a normal life with a stoma. Each patient’s conditions may vary and hence kindly treat this as a layman’s experience only and NOT an authentic medical advice.

How I became an Ostomate

After having a healthy life till late 2020 , being lucky not getting affected with diabetes /hypertension/ any cardio-vascular issues etc , I had a major setback having diagnosed with malignant tumours in my urinary bladder . The only treatment was to undergo a radical cystectomy , that is complete removal of urinary bladder , prostate gland, and lymph nodes. Luckily for me, the tumours were muscle non-invasive and so the malignancy was confined within the inner walls of the urinary bladder and hence I did not have any chemotherapy.

Although it was a major shock for me , I somehow sailed through the major surgery with the excellent support of my surgeon, hospital staff and most importantly my wife. And above all the divine blessings of the Almighty God helped me in recovering fast. Having a positive attitude , exactly following the advice of my Uro-surgeon , not worrying unnecessarily, and having complete faith that the Almighty will help me overcome the setback -all these factors also helped me during that difficult time .

What is Stoma

What is a stoma? The term stoma was something completely new to me and my family- none of us heard about it till I had this surgery . It refers to an artificial opening made in the abdominal region either to evacuate urine ( for Urostomy patients like me) or stool for Colostomy or Ileostomy patients for whom the colon or rectum is removed . I am sharing in this article only about Urostomy that I am aware of.

In case of Urostomy, since the urinary bladder is removed , the surgeon makes an ileal conduit , that is a small portion of the ileum ( part of intestine) is cut and attached to the ureter and from the kidney the urine is diverted through this path to the stoma opening and through this mechanism the urine is taken out from the body.

Since this is an alternate path and there is no bladder to control the flow of urine , it keeps flowing continuously. Hence this requires a device to collect , store and evacuate the urine from the body. This device , called a Urostomy pouch, consists of a wafer that sticks to the abdomen around the stoma , with a pouch attached to it that collects the urine and has a small outlet with a valve ( something like a small tap) that can be regularly opened and closed to drain out the urine.

Care for Stoma and items needed

For any Urostomy patient the most challenging task initially is to learn how to change the wafer and pouch without anyone’s help. The stoma for an Urostomy patient is mostly on the lower right quadrant of the abdomen and only in rare cases , due to some individual patient’s constraints it may be located in other spots. The position of stoma is such that unless we have a mirror , it is difficult to have a clear view while fixing the new wafer and pouch. Colour of the stoma should always be deep pink or red like the inside of cheek.

During the first change of the urostomy pouch that was done by the ET ( Enterostomal Therapy) nurse, my wife observed the procedure and learnt how to change the urostomy pouch and also other aspects associated like cleaning, the stoma area, caring for the skin etc. Later on I learnt from her and started doing it myself and within 2-3 weeks , I was able to change the wafer and pouch without anybody’s help. Now, it has been more than 4 years from the surgery and I can share some of the practical tips that may be useful for others Ostomates.

First and foremost is to accept the new lifestyle and proceed with life. There is no point in brooding over what fate had thrown at us! For example I have been a non-smoker throughout my life and still I got malignant tumours in urinary bladder ( at least 80% of the cause for such tumours is supposed to be smoking!) . Till today I do not know what exactly caused these tumours to be formed in my bladder!

Cleanliness- most important aspect while changing the urostomy wafer and pouch is to clean the hands thoroughly , with a good soap and also have the finger nails cut frequently so that there is no dirt in the fingers.
Frequency of change-though most of the companies that make the wafers and pouches recommend change of new wafer and pouch in 4-5 days, I find practically we can do it weekly once. For those still having regular in active service/ business etc , doing it on a Sunday , or whichever day is the weekly off is ideal . That will help in giving proper rest so that the wafer and pouch sticks to the body properly.
Types & Brands of Urostomy wafers and pouch: There are basically two types of pouching systems-single piece & two piece. In single piece the wafer and pouch is one single unit , whereas in two-piece the wafer is separate and pouch is separate-both are fixed together with the help of a flange. Wafer is the piece that sticks around the stoma and has a flange around which the pouch is fixed -one should hear an audible click when fixing so that it is ensured that the pouch is fully fixed to the wafer.

I have been using a two-piece system only so far and find it comfortable, though single piece is supposed to be more superior, but a bit costly. I have been using all along Convatec brand , but others like Coloplast and Hollister are also good brands. Of late I hear there are some brands made in India , but I have not tried them so far.
Accessories – Apart from the wafer and pouch , there are other items required to ensure a proper fitment and prevent frequent leakages.
- A paste called Stomahesive is applied on the circular portion around the wafer’s centre, along the hole , to ensure there is full adhesion of wafer and no leak occurs. Many Ostomates use an additional elastic barrier tape also for better adhesion , but I have never used them ; instead I apply a simple wide area fixation dressing tape around the edges of the wafer and it gives me confidence of full adhesion.
- A skin protective wipe is used to clean the area around the stoma before applying the new wafer so that it gives a good sticking surface and also helps in cleaning the area just near the stoma.
- Skin conditioning cream ( made by companies like Convatec/ Hollister/Coloplast specifically for Ostomates) to be applied in the area around the stoma is required to maintain skin health.
- A hand-held magnifying mirror helps in getting a good view of the stoma and while applying the wafer , we can be sure that it is perfectly aligned over the stoma centrally. Mirrors with one side having magnified image is better as it gives a perfect view of stoma while applying the new wafer.
- Small pieces of clean cloth , suitably disinfected with Dettol and dried or sterile gauze strips for cleaning the stoma area immediately after the old wafer and pouch is removed.

Process of changing the wafer and pouch:

Ideally for a Urostomy patient, it is essential to carry out the change of wafer and pouch weekly. And most important is to do it early in the morning , without drinking any water, liquids etc so that the output from the Stoma is absolutely minimum. I am trying to give a step-by-step process that I follow -individuals can make slight changes or adjustments as per their own convenience.

After waking up and finishing the morning toilet routines , get all the necessary items ready after washing the hands thoroughly.
For Urostomy patients , during the initial 6 months , the stoma size can vary and hence one is advised to measure the stoma using the template provided by all wafer makers and cut the wafer according to the stoma size. Use a clean and sharp scissors to cut the hole at centre as per your stoma size. There are some types of wafers that have a mouldable centre that does not require cutting , but I have not tried them so far.
I apply the pouch to the wafer flange as it has a transparent window to view. Earlier I used to apply the wafer first and then fix the pouch , but found it is better to fix the pouch beforehand as it helps me in holding on to the pouch and wafer quickly after sticking . There will be a removable paper on one side of the wafer which should be removed only at the time of sticking the wafer.
Keep all these items in readily accessible place: stomahesive paste, skin protective wipe , wide area fixation dressing ( cut into strips of around 3- 4 cms width) or elastic barrier tape , lots of clean tissue papers ( will need them if there is output of urine from stoma at the time of fixing) . Also keep the hand-held mirror ready, with proper lights on in the room. If you are changing the wafer & pouch sitting on a bed , then keep a small plastic/rubber sheet to sit as many-a-times the urines flows out and this will prevent the bed from becoming wet.
Use an adhesive remover spray and apply that around the wafer and wide area fixation dressing or elastic barrier tape so that the skin is not stretched too much while removing the wafer. One can also use warm water around the wafer and dressing/barrier tape , but the adhesive remover spray is more convenient and has less stress on the skin One has to remember that life-long the skin is going to get stretched during every change.
I have the full bath on the days I change my wafer. I have seen some videos in which people have a full shower /bath with the wafer on all days by using a protective wrap around the wafer , but I have not personally tried this. On the regular days, wrap around a towel around my stomach , thereby protecting my wafer & pouch and have a bath by cleaning all the areas except the abdomen. I find this convenient with no worry of getting the wafer drenched in water. Those who would like to use a shower daily , please go ahead by seeing the videos that show how you can protect the wafer & pouch with have a regular shower.
Use a clean cloth or gauze to wipe the area around the stoma after removing the same . I use a very tiny drop of mild liquid soap to clean the area around the stoma. Never use strong soaps/ soap bars especially directly on the stoma and immediate place around the stoma.
Alternate weeks , I also use a disposable razor and shave off any excess hair around the stoma so that it helps in keeping the area clean and for better adhesion. However utmost care is needed while shaving -ALWAYS USE NEW DISPOSABLE RAZOR AND THROW IT AWAY AFTER ONE USE. NEVER USE REGULAR RAZOR THAT WAS USED FOR NORMAL FACE SHAVING. Also the shaving must be done by moving the razor away from the stoma , on the circular area . If someone is not confident about this , please avoid or take help of someone else you trust.
After completing the cleaning and bath, dry the area around stoma using a clean towel or tissue and use this opportunity to be there in the bathroom for some time. This is to help the skin “ breathe” a little as otherwise it is always covered. Apply a small quantity of skin conditioning cream once the area is dry and allow it to get absorbed.
I usually do the process till this and then some out to the bed and sit in a reclining position on a plastic /rubber sheet and apply the stomahesive paste to the wafer ( that was already precut to the size of stoma and attached with the pouch) after removing the protective paper . Allow it to rest for just 1-2 minutes and during that time , use skin protective wipe to clean the area surrounding the stoma thoroughly.
Keep the hand-held mirror in one hand and place the wafer around the stoma , carefully ensuring the stoma is right in centre without any skew. Ensure the room is having sufficient light . Press the pouch and wafer together with one hand and continue in reclining position for 2 minutes.
Those who have a clean , sterile, and proper shelf space in the bathroom can change the wafer in the bathroom itself after the bath. However it is advised that the wafer is applied either in sitting position or lying down-I apply it in sitting position and after 1-2 minutes , holding the pouch and wafer cupping the palms over them, I immediately lie down and hold the both the palms cupping over the stoma for at least 10 minutes. So if you are fixing in the bathroom, after fixing , go to the bed and lie down for 10 minutes.
Then carefully lie down , without lifting the hand from the wafer and keep applying mild pressure -the palm should be cupped and should not be pressing the stoma directly.
I usually lie down , placing the cupped palms ( both hands one over the other) for around 10 minutes. This provides a mild heat from the palms and so the wafer sticks fully to the skin. Also all the four sides of wafer will stick fully with this step.
Use the hand-held mirror to place a strip of wide area fixation dressing on the bottom side of wafer-you can hold the mirror by bending the knees and placing the mirror between your legs so that it reflects the bottom side of wafer clearly. Apply further tapes on all sides either lying down or in reclining , sitting position.
Do not move for 10 minutes after this and ensure the wafer is completely sticking to the skin with no leakages.
You can then get up and dress up .
I usually do not do any bending activity or movements for one hour- I sit still in a sofa or chair for around one hour . Of course this is just abundant precaution and generally one can move around the house after 20- 30 minutes of fixing the new wafer abd pouch. Avoid too much of bending forward on that day so that there is no leakage.
Still , despite all these careful steps, on an average twice a year I have faced unexpected leakage from the wafer on the day I attached a new one either on same day or even next day. I still do not know why it happens-just be prepared for this and stock your wafers & pouches accordingly!
All old wafer pouch, tapes , cloth used for cleaning , razor etc should be put in a plastic bag and safely disposed off as per the garbage disposal rules in your locality.

Other tips and tricks-travelling and night time care

It is always advisable not to bend forward in such a way that the wafer gets loosened. Bend at your knees instead of bending forward
While driving car or even seated in car or anywhere, try to sit in a reclined position instead of bending forward. That way there are lesser chances of wafer getting separated from the skin.
While putting on seat belt in car , place a small napkin over the stoma so that the belt does not apply too much pressure directly on the stoma.
During night time , to avoid getting up frequently for draining out the pouch, use a night bag ( urometer bag) connected to the pouch ‘s outlet through a connector. Remember each make of pouch has different outlet size and hence the connectors also vary. Normally the manufacturers of pouch provide spare connectors free of cost in each box of pouch. Convatec provides two connectors free of cost in a box of 10 pouches. On an average 500 ml of urine gets collected overnight and when you get up in the morning, ensure the night bag is drained off completely , cleaned with fresh water with a drop of Dettol and rinsed thoroughly. Keep the outlet of night bag closed fully and change the night bag every one or one-and a half month.
Some use an extended leg bag that can hold additional quantity of urine and will be useful during long travel with no access to a washroom. I have not tried this so far.
Whenever you are travelling for more than one day, keep spare wafers , pouches and all accessories as mentioned above in a readily accessible luggage , that you carry with you. One thing I have realised is that in spite of taking utmost care while fixing a new wafer , one can never avoid any sudden leakage . Though it happens once in a while ( for me the general frequency of unexpected leakage has been only 2-3 times in a year), it is absolutely essential that you carry spare wafers , pouches and accessories as these are not readily available in a medical store.
While travelling in a flight, always carry a wafer that is pre-cut to the stoma size as you will not be allowed to carry scissors in a flight. I always have two full kits in hand luggage, with pre-cut wafers and spare kits in checked -in luggage while travelling in flight and staying outside home for a week or so. If the stay outside is in months, then take required quantity of wafers & all other accessory items unless you are sure that you can get these items easily in the place you are visiting . When storing these items in car, avoid keeping them in hot area for long time , like boot of the car as the wafers’ adhesion may get affected.
During the security check in , at least on 3 occasions, the security staff found something unusual in the bulge at my waist while frisking and asked me to step aside for detailed checking. Do not worry , they usually check for any dangerous substance not allowed in flight by rubbing a small strip around the pouch and then clear you. I always carry a laminated declaration , signed and sealed by my surgeon that I am an Ostomate and have the artificial system to drain urine. The declaration format is available in many of the prominent wafer -pouch manufacturers website ( Coloplast/Hollister/Convatec). You can download the same, fill -in and get it signed and stamped by your surgeon or hospital.
While draining the pouch in public toilets, train , aeroplanes etc, please check if they are clean and do not have direct contact of pouch with any surface.

Other outdoor activities

I have read about how many urostomy patients swim, do cycling , participate in many sports ( of course avoiding direct contacts over the stoma) etc and lead a completely normal life. Although I have not done any of these activities , one can check the authentic sources in Internet about these . However it is always advised to consult your doctor/ surgeon before undertaking any such activities.
As far as normal job/ work in office or any other non-hazardous occupation , many people do this after having become an Ostomate and life mostly goes on as usual. In my case , I took a break from my regular corporate service and now I am a free-lance consultant , with the freedom to choose the job as per my convenience. I do travel and has even travelled abroad within a year of my surgery and did not face any problems.
It is very important to constantly check with your surgeon for periodic follow up and follow the advice of the surgeon and get the tests done without fail.

Ordering of Wafers, pouches and accessories

The Ostomy Association of India provides most of the items required for Stoma care . However there are some good online sources , from whom I have been buying regularly. My experience is that compared to any local dealer , online suppliers sell at good discounted rates. Always plan your stocks well in advance -I usually keep 2- 3 months requirement in stock; individuals can decide based on their needs.

To sum up a long article, I have shared all the tips that I have been following to the best of my knowledge- Hope those who read this find it useful . Never get dejected by being an Ostomate-life goes as usual and have a positive attitude always. All the best for a healthy life!

By P.A. Sivanandam,

Pune, Maharashtra, India