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





  • Thank you just read about the reversal process,,I’m waiting on having a reversal and parastomal repair, I’m feeling very anxious at the moment wondering whether I’m doing the right thing having a reversal I really don’t want leaking and having accidents just the thought of possibly never having that bowels control ever again, just makes me think to keep my stoma. 

    im just about to have a pre op assessment for having the sigmoidscope so I’m sure I’ll find out whether I should be fine with bowel  control fingers crossed 

    Laura

  • Thanks Ian.  I'm waiting on my ileostomy reversal currently.  They said it would be 3-6 months, I'm at the 5.5 month mark at the moment and they are 'unable' give me any indication of how much longer this will be. 

    I think part of me was like - have the LAR, have the reversal, then return to life and I find I'm just waiting and waiting, while my anxiety is growing and my depression is taking a firmer hold.

    I hate the waiting!

    Anyways, I just wanted to thank you for all this information - it's so helpful to have it laid out like this as sometimes the consultants/nurses words don't hit home the same way as being able to have this kind of information.  I had a pre-op nurses who was very blase and literally avoided answering all of my questions - just not me 'not to worry' and the doctors knew what they were doing.  You would think a medical professional would know not to tell an anxiety patient not to worry!!?!

    Really appreciate you taking the time. Thanks again.

    Kat  

    x

  • Hi there I’ve just picked up this thread sorry I’m late 

    Its a little confusing to read I can’t seem to get earlier posts  sorry if I’ve missed some info 

    I was told three months then six in reality I was thirteen months for a reversal 

    if you have a questions fire away 

    best wishes 

    Ann
     ‍Art

  • 13 months - oh, Ann, the wait must have been awful - I'm so sorry you had to experience this.

    I don't know what I will do if my wait is that long ... I'm miserable and off work at the moment due to a combination of factors mostly relating to stress, part of which is from not having a date!

    Thanks for sharing xx

  • Hi there 

    I contacted my colorectal nurse for a time frame often and she told me eighteen months in the end . I pushed and got thirteen 

    I was fine though with my stoma , I travelled abroad and lived life to the full. I knew the reversal would take time to calm and settle so I pushed for autumn and got it. 
    I was more than happy that my cancer was in the bin. I had control of my output which gave me confidence 

    I hope you feel better soon 

    Ann
     ‍Art

  • Hey,

    My stoma nurse proudly told me that they say 3-6 months but theirs often are done closer to the 3 month mark.  When

    I spoke to her about 6 weeks ago, she said there were less that 10 people in front of me and they had managed to secure an extra surgery.

    Speaking with the colo-rectal secretary a couple of weeks ago, the list no longer works like it did before.  She has no way of knowing when my surgery will be ...

    I know they can't help me and it's not their fault - I know that cancer patients take priority and now I'm clear, I'm no longer that - but it's still a high anxiety limbo to live in when I just want to go back to a 'normal' life.  I'm 43 and I want to be able to do more than I currently am.

    Kx

  • Bless you 

    The strikes that the consultants are taking with the Junior doctors literally is breaking a vulnerable system. 
    I’ll keep my fingers crossed. It sounds as if you were close to the top and maybe if you go to your GP to get support with your stress levels you may get the operation quickly

    Its a simple op in and out in no time however the bowel training can take a little while.

    My surgeon fitted reversals in before and after his larger operation so he made use of the theatre all day. 

    I was in at 6.30a.m and waited until 4.30pm before walking into theatre. As you scan imagine with an Ileostomy I was extremely dehydrated my head was banging. Still it got done 

    Keep reminding them and try and get out more. The stoma shouldn’t stop you from doing anything 

    sending you a hug x

    Ann
     ‍Art

  • Hi, I have had my stoma since July 2022 and am still waiting for reversal. I'm hoping it will be this year but with all the strikes I may have to wait until next year now.

  • Cloe - OMG?! I'm so sorry you have to wait so long ... I hope it doesn't impair you too much.  I find it hard to do things the same way since my surgery - part of which may be just my surgery but a large part is the constant reminder attached to me that I have to empty a million times a day and take loperamide to deal with!

    I find it so frustrating when they give a time frame that is so far off the actual time it takes.  

    I would rather hear that it's longer than expected than given false hope.

    Can I ask where you are based in the UK?  I do wonder if it's particularly bad in some areas and better in others - makes you think about moving if you have constant care needs haha!

    Kat x

  • I’m sorry that you’re having a rotten time with your stoma. It shouldn’t be ruling your life. 
    I hope you get your date very soon 

    Sending you a hug 

    Ann
     ‍Art