Stoma

HI Jackie,

I'm sorry to hear that your cancer has returned, and cannot begin to imagine how you must feel. Although, I expect it's probably at the back of everyone's mind when they're given the all-clear. 

I have a permanent stoma, and didn't know what one was until I was told I was to have one. It does seem pretty daunting at the beginning, but it's actually not that bad, living with a stoma. You will have some wonderful support from your stoma team - don't be frightened to ask them any questions... they will have heard them all! And of course, we are here too!

I think the key to a stoma is to get into the mindset that it is what it is, and then just deal with it. You may think it's a big deal at the outset, but over a short space of time, it'll become like second nature to you. Without knowing specific questions you have about it all, it's hard to know what to say! But I hope this will help a wee bit.

Linda x

Hi Jackie

Welcome to the online community and the Ileostomy, colostomy and stoma support group  I'm sorry to hear that after two years of being clear it has returned and your need surgery and the formation of a temporary stoma.

Living with a stoma is not too bad and it is certainly preferable to the alternative

With a stoma you will be able to continue to have a normal life and I have put the following together for you.

Stoma surgery

can often be an overwhelming experience, but being well prepared before and after surgery can make a big difference to you and your recovery.

To help you through the first 12 weeks after stoma surgery, these notes will give you an indication of what you can generally expect with each stage of your recovery.

Day One – Waking Up with an Ileostomy or colostomy.

When you first wake up following stoma surgery you will be wearing a pouch over your stoma. You may hear this be called a bag, a pouch or even an appliance. You may find your stoma may not work for 24 hours but don’t panic as this is quite common depending on your type of stoma.

At first, your stoma may seem to be larger than you expected, but this is normally caused by the effects of surgery and will reduce as you recover (this can take up to eight weeks). 

The ward staff or stoma nurse will help you care for your stoma at this stage.

When you have mastered the act of emptying and changing your pouch by yourself you will be ready to go home.

With an ILEOSTOMY your output will range from watery to porridge consistency.

With a COLOSTOMY your output will be thicker and formed

Ostomates should drink about 2 litres of fluid per day (water, squash, tea, coffee, soup all count towards fluid intake.

Small meals and often is best.

 Going Home After Surgery

The time you might have to stay in hospital following surgery can vary from person to person depending on the type of operation and your general health.

Whilst you are in hospital it is very normal to feel overcome with emotions. You may find yourself feeling confused, sad, angry or generally fed up, or you may have a mixture of these emotions. Try not to worry as these feelings are completely normal and should diminish as you start to adjust to life with a stoma. If you feel like this then you can talk to your stoma care nurse. Depending on where you live, you will either have home visits from the stoma care nurse or you may have to visit the stoma clinic at the hospital.

When you leave hospital you will be given an initial supply of pouches and any other accessories that the stoma nurses think you'll need  they will also arrange for a months supply to be delivered to your home within a few days and give instructions how to reorder, the recommended time to reorder is when you have 2 weeks of everything left. You can't afford to run out. Your supplies will be delivered to your home by a dispensing appliance contractor or DAC although your high street pharmacist can supply the DAC's are experts and they normally hold stocks of most items.

You should receive complimentary items such as disposable bags and wipes with each order.

Adapting to Life with a Stoma

During the first few months after stoma surgery, it is important to recognise that you and your loved ones will be undergoing a major period of adjustment. Having a stoma means you need to adapt to a new “normal” way of life.

Don't lift anything heavy and if you feel the need to sneeze or cough protect your abdomen with your arms/hands to avoid getting a hernia.

As you start to feel better the chances are your appetite will improve and your body shape may change as a result. If this is the case, then it may be necessary to be reassessed to ensure you are wearing the right pouch. Not only can wearing the right pouch increase your confidence, it can reduce discomfort, prevent leakage, as well as help you to get back to the activities you loved to do before your surgery.

Your stoma nurse can advise on what products are available and give you advice and arrange samples as necessary  

Introducing Activity Back into your Life

12 weeks on and you should be starting to feel much more comfortable and confident with your new lifestyle as your stoma management becomes a more routine part of your life.

Listen to your body before engaging in anything strenuous.

This could be a good time to start revisiting the activities you enjoyed before your surgery such as swimming, golf, archery and more. Once you do start to become more active you may find the product you are using may not be suitable.

During this initial adjustment period, however, make sure to keep in close contact with your stoma care nurse. The answers to any problems or concerns are usually just a phone call away.

It’s widely acknowledged that a healthy lifestyle can improve mental health and aid recovery. Active can mean something as simple as carrying your food shopping to the front door or playing with the kids. It could also mean walking, jogging or even more strenuous sporting activities like running, cycling or competitive sports. It’s important to find the right type and level of activity for you, but every little helps. LISTEN TO YOUR BODY

You’re Not Alone

Adjusting to life with a stoma may feel like a challenge, physically and mentally, but just know that you are not alone. Your stoma care nurse and healthcare professionals are there to help you every step of the way and you will receive a tremendous amount of support from the members of this group.

If you do feel like you are struggling to come to terms with adapting to life with a stoma just come on to this group day or night and tell us what you are struggling with or concerned about and as we all have a stoma or have had one we will give you all the help, support and advise that you need.

Remember YOU own your stoma, your stoma doesn't own YOU.

Your stoma items are supplied on GP prescription.

Check to see if you need a medicine exception certificate or do you need a prepaid medicine certificate.

You are entitled to use Disabled toilets and you should have a RADAR NKS key and an URGENT, CAN'T WAIT TOILET CARD.

You should put together a little bag that you take with you whenever you leave the house. The bag should contain a spare pouch, wipes, disposable bag and any other items that your stoma nurse has suggested you use at every change, you may find that you'll want to include some spare underwear in the bag and I'm going to be very honest with you accidents happen, punches leak but if you're prepared and don't panic and just find the nearest toilet and do a change brush yourself of and carry on with whatever you were doing previously

You may wonder what a person with a stoma looks like and I can tell you we look like everyone else.

I know you will have lots of questions and these will pop into head at all times of the day or night when have a new question just come on here give the BODACH a shout and I'll answer any question you want answered and really Jackie I do mean it I'll answer any questions you have to do with having a stoma, there is no subject that I haven't answered a question on before ranging from the colour of poo to the personal side of relationships.

I have a stoma, I live with a stoma, I own my stoma and you will do the same with the help of everyone in this our poo corner.

I am Ian and I'm the and I look forward to be of help and support to you with advice from now onwards.

Please keep in touch.

Ian 

Hello Linda thank you so much for replying to me.  It’s good to read other stories and pick up tips  

I only saw this today as it had gone into my junk mail. I was due for my operation tomorrow but hospital rung and cancelled due to no bed . Now scheduled for 24th September. So frustrating. 

I have my first appointment with the Stoma Nurse this Friday. Feeling overwhelmed but putting on brave face xxxxx. 

Oh Wow Ian thank you so much !!! 

What a great amount of information !  Sorry for delay in replying but your reply went into my junk mail !  

My surgery tomorrow has been cancelled and rescheduled for the 24th September. I have my first appointment with Stoma Nurse this Friday. 

Thank you again, I’ll keep you updated. 

Jackie. X

HI Jackie

Sorry to hear that your op has been cancelled, it is frustrating having an extra wait imposed on us, try not to think about it and just carry on as normal if you can.

As your say you're having your first meeting with stoma care nurse on Friday this will probably be to mark the position of your stoma on your body. You should take time to consider the type of clothes you wear and even more importantly what you will be wearing when you return home. Pay particular attention to how high or how low you normal have the waist band on your skirts and trousers and ask the nurse to mark the position in such a place that your clothes wont cut your bag on half as this may cause problems at a later date. The stoma care nurse will know what you are talking about but she will need to know the type of clothes you normal wear, but as a guide loose fitting tops and stretchy trousers and skirts are the order of the day.

The position will be marked with cross and covered with a large plaster so showering etc will not be a problem.

The ladies will no doubt be a long shortly to give their advice on the best type of clothes to wear after your surgery, but I afraid I have to tell you having a stoma is not an excuse for a new wardrobe, sorry.

Seriously my offer is always available to answer any questions you may have in the days leading up to the surgery but when you get home I'll still be here to help you out whenever you need me at anytime.

Hopefully this doesn't end up in your junk box, I would maybe check your inbox settings as these messages do occasionally end up in the wrong place.

Hope all goes well for you and do please keep in touch and let me know how you get on or if you need to know anything.

Ian

Hi Jackie,

I'm sure you must be frustrated with the delay in your op, but I thought I would try and brighten your day and give you something to think on...… with your surgery scheduled for September, set a goal to enjoy your Christmas Day dinner! My surgery was in September 2012, and I spent Christmas Day 2012 with family, at the dinner table and for the duration of the dinner too! To many that probably sounds daft, but to me, it meant so much to have been able to do that. Of course there were ups and downs between my op and Christmas, but I certainly enjoyed that Christmas!!

Keep in touch.

Linda xx

Hi Linda 

Thank you for that message and yes you are right. I must start thinking that way and setting goals, rather than dreading Christmas lunch !  I’ve been a bit down and miserable, but I’ve given myself a talking to today and am getting my positive mental attitude back !! 

Thank you again xx. I will stay in touch x 

Jackie x 

Hello Ian, and thank you so much again for reply and the information. That’s something I didn’t even consider - my clothes !  Actually they are all too big as Im loosing weight so fast !  All these years of wishing I was thinner. 

But thank you I will think all about this before I go to the appointment. 

BTW message ended up in Junk again. Waiting fir Grandson to come round and show me what to do

j

Jackie xx 

Hi, I know that having a stoma is a daunting prospect but I was pleasantly surprised at well I adjusted to it. Do make sure that you stick to a low fibre diet in the beginning then gradually reintroduce fruit & veg. I started with fruit smoothies and veg soups. Jimmy has been posting my recipes Dining with an Ostomate on the Community Blog, take a look.

As far as clothes are concerned, I took loose fitting, elasticated waisted trousers to hospital and wore them for a few weeks afterwards too while the soreness from the operation decreased. Once that had happened, I pulled all my clothes out the wardrobe and tried them on to see how the stoma bag fitted underneath. I either wore 'big pants' that covered the stoma bag and held it flat if I was wearing skirts or dresses without tights, but ordinary ones when wearing tights as they also do the same job. It seems really noticeable to you but not to others, honest! I wore tight fitting dresses, it helps if you have any with ruching around the waist or a belt that you can tie and position over the stoma site.

I have just had a reversal so no longer have my stoma. I had it for 7 months, and by the end I really almost forgot I had it most days. I was eating pretty much what I wanted. It will be very strange in the beginning and takes some getting used to but I'm sure you'll have support from your stoma nurse. Any questions just message me. Good luck! x

Hello and thank you for replying to my message.  

Its a waiting game at the minute as my operation is now on 24th September. I try not to think about it too much but I know I need to start getting my bag prepared for hospital. 

Thank you for the clothes advise I will keep you updated and am sure will have lots of questions once I’ve got the Stoma

Jackie xx