Part 2 - The FAQs of having a stoma reversal

FormerMember
FormerMember
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Hi all

You may remember that I started this post Part 1 - waiting for reversal - I need to know at the end of September and now have this for you, Part 2 - the FAQs of having a stoma reversal and hope you will find it of interest and of help pre and post reversal.

Before I list the FAQs it only right that I thank the many stoma care specialist nurses that I am associated with for looking this over for accuracy also all my contacts involved in the manufacturing and supply of stoma products and to the Cancer Research, Bowel and Bladder UK and Chrohns and Colitis UK, the United Ostomy Associations of America and our own NHS for their helpful articles that helped me double check all the FAQs and not forgetting  for suggesting a few of her personal "things to know" that she requested be included

FREQUENTLY ASKED QUESTIONS -

STOMA REVERSAL 

Q. What is a stoma reversal?

A. Stoma reversal surgery involves rejoining the piece of bowel that is your stoma with either your colon or your small bowel and then closing the stoma site. Both a colostomy reversal and an ileostomy reversal are performed in the same manner.

Q. Is there an Alternative to surgery. 

A. The alternative to this surgery is not having the stoma reversed and keeping the stoma. Around 1 in 12 patients who have had a planned temporary stoma for cancer of the rectum will keep a permanent stoma. 

Q. What happens during a stoma reversal?

A.The stoma is cut away and the remaining parts of the colon/bowel are are attached by stitching together and placed back into your abdomen.

Q. I have a loop COLOSTOMY, can I have a reversal?

A. Yes, Reversing a loop colostomy is a relatively straightforward process

A cut (incision) is made around the stoma so the surgeon can access the inside of your abdomen. 

The upper section of your colon is then reattached to the remaining section of your colon.

Q. I have an end COLOSTOMY  can I have a reversal?

A. Yes, An end colostomy can be reversed, but involves making a larger incision so the surgeon can locate and reattach the two sections of colon.

It also takes longer to recover from this type of surgery and there's a greater risk of complications. 

Q. I have a loop ILEOSTOMY , colostomy can I have a reversal?

A. Yes, Reversing a loop ileostomy is a relatively straightforward procedure that's carried out under general anaesthetic. A cut (incision) is made around the stoma and the section of small intestine is pulled out of the tummy (abdomen).

Q. I have an end ILEOSTOMY can I have a reversal?

A. If most of the large intestine (colon) has been sealed and left inside the abdomen, It's sometimes possible to reverse an end ileostomy

The area that had been divided to form the stoma is then stitched back together and placed back inside the abdomen

Q. I have a urostomy can I have a reversal?

A. No, As a urostomy is a surgical procedure which diverts the normal flow of urine from the kidneys and ureters into a specially created stoma the urine will continue to pass through the stoma, completely bypassing the bladder. The bladder may or may not be removed. 

A urostomy is permanent.

Q.  How long will I have to wait for my colostomy reversal?

A. A colostomy reversal will only be carried out when you're in good health and have fully recovered from the effects of the initial operation. This will usually be at least 12 weeks after the initial colostomy surgery.

The reversal may need to be delayed for longer if you need further treatment, such as chemotherapy, or you haven't recovered from the original operation.

But there's no time limit for having a reversal, and some people live with their colostomy for several years before it's reversed.

Q. How long will I have to wait for my ileostomy reversal?

A. The reversal operation will only be carried out when you're in good health and fully recovered from the effects of the original ileostomy operation.

This will usually be several weeks or months after the initial surgery, or sometimes even longer.

There's no time limit for having an ileostomy reversed, and some people may live with one for several years before it's reversed.

Q. How is a loop Colostomy reversal carried out.

A. Reversing a loop colostomy is a relatively straightforward process. A cut (incision) is made around the stoma so the surgeon can access the inside of your abdomen.

The upper section of your colon is then reattached to the remaining section of your colon.

Q. How is an End Colostomy reversal carried out.

A. It is carried out in the same way as a loop colostomy except that it involves the surgeon making a larger incision he can locate and reattach the two sections of colon.

It also takes longer to recover from this type of surgery and there's a greater risk of complications.

Q. How is a loop Ileostomy reversal carried out.

A. Reversing a loop ileostomy is a relatively straightforward procedure that's carried out under general anaesthetic.

A cut (incision) is made around the stoma and the section of small intestine is pulled out of the tummy (abdomen).

The area that had been divided to form the stoma is then stitched back together and placed back inside the abdomen.

Q. How is an End Ileostomy reversal carried out.

A. If most of the large intestine (colon) has been sealed and left inside the abdomen, it is possible to reverse an end ileostomy.

The surgeon will need to make a larger incision to locate and reattach the small and large intestines.

It therefore takes longer to recover from this type of surgery, and there's a greater risk of complications.

Q. How long will I be in hospital after my reversal? 

A. If your hospital has an Enhanced Recovery programme where you could be discharged the day after your operation, As long as you are tolerating fluids and a light diet, are mobile, have passed urine and are reasonably comfortable on pain killing tablets then you can go home. The doctors may decide to keep you in longer if they think it necessary.

Q. Recovering from a colostomy and ileostomy reversal surgery. 

A. It's likely to take some time before your bowel movements return to normal. Some people have constipation or diarrhoea, but this usually gets better with time.

If necessary, your GP can prescribe medication to relieve diarrhoea until things improve.

You may have a sore bottom after the reversal, but this should improve as you get used to passing stools through your anus again.

After every bowel movement, it may help if you:

  • Wash the skin around your anus with warm water.
  • Pat it dry with a soft cloth.
  • Apply a barrier cream.
  • Avoid using baby wipes, talcum powder or scented toilet tissues (try Waterwipes sensitive baby wipe instead) as they can cause further irritation.

Other possible problems include 

  • Needing to go to the toilet more often or more urgently than usual. 
  • Excessive wind (flatulence). 
  • Some bowel incontinence or leakage.

The reversal operation is usually a smaller procedure than the initial colostomy/ileostomy procedure, but it still takes several weeks to fully recover.

Your bowel activity may never return to the way it was before you had the operation.

Q. Will I have any tests/examinations before the reversals.

A. A stoma reversal will only be offered if your surgeon is confident that you can regain enough bowel control following surgery. 

You may have some tests before your surgery to check that your bowel has healed sufficiently and that your anal sphincter muscles are in good working order, including:

  • Rectal examination to determine your sphincter muscle strength and your bowel control
  • Flexible sigmoidoscopy to see how well your bowel has healed
  • An enema to check that there are no leaks with your bowel join
  • CT scan to confirm that there is no active disease that could compromise your reversal.

Q. What to eat after a colostomy/ileostomy reversal.

A. Once you are home you should gradually build up to a normal diet

Your digestive system may be sensitive after a stoma reversal. The main advice is to eat little and often until your appetite returns to normal and you feel able to return to a healthy balanced diet. 

Certain foods are also more likely to irritate the gut.

Foods that contain fibre will be hard for your bowel to digest initially.

It may help to limit or avoid:

  • citrus fruits – such as grapefruits and oranges
  • spicy food – such as curries
  • large fatty meals
  • vegetables that increase flatulence – such as cabbage and onions
  • large amounts of alcohol or fizzy drinks
  • Meal snacks like crisps and biscuits are good to nibble on when you start eating. 
  • You may find your sense of taste and smell is altered following the surgery. This can be because of the antibiotics, anaesthetics and painkillers. Be reassured that your taste and appetite will return to normal within approximately six weeks. 
  • A good fluid intake of eight cups a day (some of which should be water) is advised. 
  • However if you experience constipation, you may need to drink more. 
  • If any particular food does seem to cause problems (such as frequency) just stop eating it for a while, then try again at a later date. 
  • It is advisable to keep a food diary and note any problems.

Q. Will I experience any Complications following reversal of my stoma.

A. Possible complications following surgery

As with any surgery, the operation to close your stoma has some risks which you need to be aware of. Your surgical team will take all possible steps to prevent them from happening. 

General complications that can happen after surgery include:

  • Deep vein thrombosis (DVT) is a blood clot in the leg which can occasionally 

move through the bloodstream and into the lungs causing a pulmonary embolism (PE). Whilst you are in hospital you will have an anti clotting injection daily and support socks to prevent this happening.

  • Chest infection.  
  • Urinary tract infection (UTI). 
  • These complications are avoided by early mobilisation and deep breathing. Getting up and walking around and out of hospital quickly can help prevent these problems.
  • Wound Infection.  Bleeding from the operation site. 
  • Formation of a fluid or blood collection under the scar (seroma or haematoma).
  • These complications are not serious but are the most common. 
  • Infection would be treated with antibiotics 
  • A collection of fluid will either be reabsorbed by your body or  discharged through the wound. 
  • Wound infection would usually occur after you have gone home, if the wound becomes hot, red and sore you should contact your GP or practice nurse for further advice. 
  • Hernias  

A hernia occurs when the bowel protrudes through the muscles of your abdomen causing a bulge beneath the skin. The hernia may reduce or increase in size  when lying, sitting, or standing. Hernias occur at sites of potential weakness (the stoma reversal site or at the scar of the first operation). The risk of a hernia formation is small but is more likely in frail, older and overweight patients. It's also seen more frequently in those who have strained their bodies or have undertaken too much exercise in the first few weeks following surgery. Management includes supporting your hernia with a belt or binder. This helps with decreasing the protrusion and assists in maintaining a good posture. Most hernias appear over subsequent months, generally developing within the first two postoperative years. Surgical repair may be necessary.

Q. What are Pelvic Floor Exercises

A.Both men and women will benefit from Pelvic Floor Exercises

 (click on the green text to open)

Q. Should I have a standby bag (grab and go) made up and what should I have in it?

A. It would be a good idea to have one or two handy in a place that you can easily put your hands on them. If you work have one at your workplace.

Remember you can still use disabled toilets with your NKS RADAR key, you should still carry your CAN'T WAIT TOILET CARD.

You can use any suitable bag that should contain pads, spare underwear, dry/moist (not perfumed) preferably biodegradable that can flushed wipes or Waterwipes sensitive baby wipes (not flushable), barrier cream, poo bags to put any soiled clothing in.

Q. When can I resume driving?

A. You can drive as soon as you are able to concentrate fully and can make an emergency stop without discomfort in your abdomen. A minimum of two weeks is suggested however it is advisable to check with your own insurance policy as some insurance companies state that you will not be covered for six weeks after any abdominal surgery.

Q. When I can I return to work? 

A. You can return to work when you feel ready to. However you may be surprised at how tired you feel after this operation, so it is advisable to consider returning to work on a part-time basis for a few weeks. If you have a physically demanding  job or involves heavy lifting, it is preferable not to consider going back to work for six weeks, and to request lighter duties if possible. This will initially allow you to build up your stamina and strength for normal duties. 

Q. Caring for yourself at home?

A. Having had surgery on your abdomen, you are advised not to lift for the first six weeks. It is important that you do not do any heavy lifting (no heavier than a half-filled kettle) for at least two weeks following the operation, and build up gradually. The concern is that if you put too much stress on your abdominal muscles, you may cause a permanent weakness, which may lead to a hernia in the old stoma site. 

Q. Coping with bowel problems when I get home?

A. Your bowel habits may be erratic for some time following surgery. You may experience 

  • Loose motions or constipation,
  • Urgency, 
  • Pain when passing motions, sore skin around the back passage, 
  • Incomplete emptying 
  • A degree of incontinence for up to a few months following surgery.

Following your stoma reversal there are some things you can do to help control your symptoms and regain your bowel control following stoma surgery.

After each bowel movement. 

  • A barrier cream such as zinc, castor oil, Sudocrem, Cavilon or Vaseline can help you to prevent getting chapped and sore skin
  • Try using a haemorrhoid cream if your bottom gets very sore, as it has a slightly anaesthetising effect
  • Retrain your bowel – your rectum and pelvic floor muscles are likely to be weaker than before your stoma surgery. This will be because they have been inactive for some time. Pelvic Floor Exercises can help to strengthen and tone these muscles, which will help you gain better control. 

Q. What should I do if I have an urgent feeling of needing the toilet?

A. The obvious reaction is to make a dash to the nearest toilet and hope that you can make it without having an accident en route. Nurses recommend that you stay put and control the feeling with your sphincter muscles until the urge passes then go to the toilet. (See doing you Pelvic Floor Exercises)

Q. Are there any risks and side effects of stoma reversal surgery.

A. All surgeries carry a degree of risk. Below are some side effects and risks that are associated with a stoma reversal. Your surgeon should explain any potential complications in detail with you during your pre-assessment.

  • Ileus – where the bowel stops working temporarily If an ileus or bowel obstruction occurs and your bowels temporarily stop working you may experience increased bloating, abdominal pain, nausea and vomiting. 
  • This can occur because of a delay in the bowel movement or contractions known as peristalsis. The cause of this condition is generally due to the handling of the bowel during the surgery and the bruising which creates swelling. It can take a few days before the bowel movements occur normally again and you start to pass both wind and  stool from your back passage
  • This can be managed by stopping eating for a short time to allow your bowel to rest. It  may also be necessary to pass a small tube through your nose into your stomach to relieve the symptoms. Keeping mobile and chewing gum will help prevent an ileus. You can return to normal diet once your bowels start working again. It would not be expected that you  necessarily have opened your bowels before you go home, but you would be expected to be eating and drinking without significant abdominal bloating, nausea or vomiting.
  • Anastomotic leak – the new join in the bowel where is joined together can come apart and leak into the abdominal cavity
  • This happens in 1 in 250 cases of stoma reversal. This is a more serious complication which usually requires further surgery. If this happens your stoma might need to be reformed. This does not mean that it will be permanent as depending on your general health, it is still possible for another attempt at reversal in the future. 
  • If there is a leak, you will probably experience a dull pain in your pelvis (the area below your belly button and above your hips), have a fever, and feel lethargic. 
  • This complication usually presents within a few days after the operation and can make you feel generally unwell
  • Abdominal Collection: 
  • This refers to a collection of infected fluid inside the abdomen and presents as worsening pain and bloating. You may also have a high temperature and either frequent loose stools or the bowels stop working. The management of this condition involves antibiotics and drainage of the collection using either an ultrasound or CT scan. 
  • Bowel obstruction/ adhesions – due to scar tissue forming in the bowel
  • Risk of hernia
  • Chest infection
  • UTI
  • Blood clots
  • Infection 

Q. When can I resume sexual intimacy  

A. The anxiety and all the stress your body has been through with this operation often reduces your sex drive. This is quite normal and in time it should return. It is important that you and your partner share time talking about your feelings, being close and enjoy being intimate without necessarily having penetrative sex. Once your body feels fitter and more relaxed, you may feel more confident resuming your usual sexual activity again. If you do experience any problems in having sex with your partner, please do discuss this with your doctor.

Q. What can I do with any supplies that I have left.

A. As hospitals and supply companies are unable to take supplies of pouches back you can send them to;

Jacob's Well Appeal

full postal address;

Jacob’s Well Appeal

Jacob’s Well Yard

Swinemoor Lane

Beverley

HU17 0JX

Telephone  01482 881162 

email; office@jacobswellappeal.org

Hospices of Hope

full postal address 

Hospices of Hope

11 High Street

Otford

Kent

TN14 5PG

UK

Telephone: 01959 525110

Send small parcels of supplies to the above address indicating that the parcel contains medical supplies.

You can find a list of the nearest drop point to you here: https://droppoint.org/hospices-of-hope

Note Scottish shops DO NOT accept medical supplies



That's my take on the subject, if you want to have something included that helped you in your recovery let me know and I'll add it to the list.

Hopefully it will be of help to many in the future.

Ian



The BODACH October 2019





  • Hi, I know what you mean  it's a constant reminder and I have to change it every day too. Yes I live in the UK. I have had tests to see if  everything has healed OK  which was OK.  Then I had a CT scan and they found a cyst which could mean the cancer has returned and I'm waiting for the results. I want to go away for a couple of days in October but it's not worth booking anywhere as I may have hospital appointments. A friend of mine had a reversal in August and I'm so jealous! I hope it's my turn soon, hopefully this year.

    Cloe x

  • Oh Cloe 

    Im sorry you must be fed up with this.
    I can empathise with you……different scenario but a call back.

    It’s horrible to be honest it’s made me angry!

    Bloody Cancer how dare it interfere with my life 

    I hope you can get away 


    Im sending you a hug and hoping it’s scar tissue from your operation and you can enjoy your holiday 

    Thinking of you 

    Ann
     ‍Art

  • Hi, yes it could be from the operation.. My surgeon said when he cut the wall where the cancer was it could have jumped over to the other side. I am a bit fed up of it all and the strikes make it even worse. I am going to ring up next week to see if they have the results as I waited 6 weeks for the last ones. Thank you for your kind words. 

    Cloe

  • My fingers are crossed for you Cloe - that you get your results quickly, they are good and you get to go away.

    It is the not being able to plan ANYTHING (along with the waiting) that gets me ... recommendations are always to have something to look forward to but it's almost impossible for plan when we're given little notice of appointments etc.  And, yes, the strikes make it so much worse; but, I don't blame them for the strikes at all.  Having spent time in hospital recently, it was obviously that the system was broken and the staff were struggling with what was placed on them but again, there are still some amazing staff that are always willing and able to make you feel that little bit better and more like a human being Slight smile

    Definitely get onto them and annoy them regarding your reversal and how long you've had to wait.  I was speaking with my GP yesterday, and she said that it's just a case of annoying them enough.  While I'm perfectly willing to do this, it shouldn't be the case.  So get on to your colorectal secretaries team and stoma nurse and make your point!  I need to do the same!!

    Sending you lots of positive energy! xx

  • Hi both 

    I phoned lots of times applying pressure. I’m not proud but at the year stage I thought that’s long enough. 
    I also explained things that were happening at home which did get their attention

    ( my hubby was going through health issues)

    I also agree that the junior doctors need less hours they work a ridiculous amount for a pittance of a salary and definitely should have the percentage raise increased 

    A consultants increase on their £100,000 could break the bank. Maybe they could support the junior doctors by striking and take a lesser pay rise.  

    That’s me off my soap box. 
    Have a good weekend 

    Ann
     ‍Art

  • HI, I know what you mean about the nurses. When I was in hospital last year I was in my own room next to the nurses station and heard them talking about how short staffed they were and they were all working very hard. I didn’t have any complaints they were all very nice just struggling because of lack of staff. 

    Thank you for your advice. I usually ring my consultants secretary. I will ring tomorrow and everyday until I get an appointment for results. I need to know one way or the other because this is making me so stressed out and if the cancer has come back could be making it worse. I am no longer in touch with stoma nurse not since last year I only saw her for about 4 months after leaving hospital. 

    Fingers crossed  x

  • Hi, did it help when you kept ring them?

  • Yes.

    I phoned my colorectal nurse explaining that my husband was diagnosed with Parkinson’s and other health issues I needed to have the reversal  quickly. 
    She said when there are special circumstances then you’re put on the emergency list. 
    I was in within the month. 
    You could write down all your reasons to have the reversal sooner rather than later. 
    take care 

    Ann
     ‍Art

  • Oh I forgot to say I said I was up for a cancellation which meant a pretty horrendous ten hour wait to see if I could be fitted in.
    That was very hard and I felt really ill and stressed

    But I’d do it again 

    Ann
     ‍Art

  • Morning Ann,

    Yes, I'm down for cancellations and as I'm 'young' in the scheme of things, I can have it done either of the 2 local hospitals.  It all points in my favour - I think I just have to write again (and maybe every week) explaining my mental health issues and the impact on my life this wait it causing.  i.e. I've been signed off from work again.  

    Thanks for all of your advice x