Operation choices AP Resection

Hi

Big welcome to the forum . Hope we can be of some help to you. 

Can I ask if the change of plan is a timing issue due to surgical issues currently being experienced? Totally understand your concerns given his fitness level and keeping his quality of life as a priority. I personally can’t answer your question but I am going to tag in a few people to discuss the adjustments to a stoma and maybe take it from that angle. I know may be some help ( name a bit of a giveaway) . might have some insights and ,and might have some help with this and Peacock62 . I am sure you mention resuming swimming !

Also there is a search facility just at the top right hand side which might let you look to see past posts which have made reference to that type of surgical procedure. I think for some people the toileting frequency has become an issue and have sought out other solutions thereafter for long term wellbeing but not all people .

Hope some of them can give you some insight .

take care ,

 Court  

Thanks for taking the time to reply. 

The alternative surgery option isn't related to covid-19 actually, thr surgeon said he felt it could be an option to avoiding a permanent stoma as he knows my husband would prefer to not have one. The way he has described it though sounds like the risk of having urgency to go to the toilet, leaks etc could be high (50/50 chance).

Hearing from other active people who live with a stoma would be great to give us an idea of how big an impact it would have on 'normal' life.

Thank you.

Hi Northern101

Helen I have had an Ileostomy just over 10 weeks now done on the 10th February due to a blockage in my bowel after I had surgery to remove a tumour in my large bowel. The resection obviously didn't go as planned and almost 6 months after original surgery I had an Ileostomy fitted. I am a fit well sort of 49 yr old male I have gone back to doing normal physical garden work as I work in an office for my job but currently shielding due to chemotherapy. Obviously my situation is completely different but I have adjusted ok to the Ileostomy and deal with it ok on a day to day basis. Hopefully this is abit helpful but please don't hesitate to ask anything and I will try to answer also please see my full profile by clicking onto my name.

Stay safe everyone

Mark

Hi Helen,

Welcome to the group. What a decision to make! I wanted you to know that having a permanent stoma is something that you can live with, and live well with. I've had mine now for nearly 8 years, and of course things are a bit different, but you can pretty much carry on living the life that you had pre-stoma. With a permanent stoma you can look at irrigation as a method to give back some control over the bowels. Some people irrigate once a day or every other day, but the confidence that it gives you is immeasurable. So perhaps the permanent stoma and then irrigation is a way forward for your husband. Having a stoma will not stop your husband continuing with his sporty life, and nor will it hinder him being active with the kids as they grow up.

Always happy to answer any questions that you might have.

Take care,

Linda :-)

Hi

I had an anterior resection in October and have a temporary illostomy,  I have to admit it has not been easy but I have before the virus resumed swimming , walking loads and doing a park run with the illostomy whilst being on chemotherapy   I wear all the same clothes as I did before and nobody even notices I have one. I was terrified of having one I am still afraid of hernias etc but they provide you with support belts etc I have a special one for swimming , I have also done yoga , resistance band training and Nordic walking all with the wonderful Maggie Centre.  I have to say there is a difference between an illostomy and a colostomy as to how you eat and change the bag etc, I honestly thought I would never be able to cope but I do . I can't at this time comment on the reversal this is what worries me most about afterwards but I can't see this happening for a while because of the virus. There are on the Coleplast site various excersises you can do after your surgery when it is safe to do so to help prevent hernias etc I wasn't advised any of this at the hospital so it's worth checking out online to help yourself , I had open surgery so had to wait at least 12 weeks before any thing other than walking . The stoma nurses will take very good care of you and won't let you home before you can manage  , I couldn't look at mine for ages but they were very patient.  Sorry if it sounds like a mixed bag but I didn't want to gloss it over but you can and will be able to do your favourite sports , I can't wait to get back to open water swimming when the virus is over and will do with the ilostomy,  Well good luck with you all the way

Lots of love

Peacock62 xxx

Hi Helen, my surgeon made it a slightly easier decision for me, as he said it would probably be a very slim chance of a rejoin being a success, I will be honest what one person see's as a success may not seem that way to someone else, I am six months post op and am pretty much back to normal, if honest fitness strength and stamina eighty percent on a bad day, ninety percent on a good day, the colostomy is fine and doesn't stop me doing anything that I did before, it is a big operation and takes a lot of time and effort to recover from, I wish you well in making your decision,there are no right or wrongs, I always think to go with what's right for you, cheers John.

Hi Helen, please let me welcome you to your online Community, the bowel group and Ileostomy, colostomy, urostomy and any other stoma support Group and whilst we are all very sorry to see you here we appreciate the journey you are about to embark on with your husband is not going to be easy but with us beside you to help, advise and support you it will make journey easier to accept. We are here to answer questions and in each of the group's we have members who have been on the path before and will share their experiences with you and other members will be on hand if you need to chat.

Its some curved ball your husband's surgeon has thrown and you are very right there is little or no information on the proposed surgery except to say that as its a partial intersphincteric AP resection that has been proposed which could eliminate wearing a colostomy pouch which means that he is hoping to cut away the diseased part of the bowel and rejoin the two ends during the surgery.

The partial part of the operation refers to the upper ⅓ of the Internal Anal Sphincter and that is why is there 50% chance that incontinence will occur.

An anal sphincter is a group of muscles at the end of the rectum that surrounds the anus and controls the release of stool, thereby maintaining continence. There are two sphincter muscles one is internal and one is external.

Unfortunately because of the current Convid-19 situation I can't refer you to our volunteer anal surgeon who would have been able to give you more on the pros and cons of the procedure.

During the meeting did the surgeon mention that even if your husband decided to go along with the plan that there could still be a chance that once he sees the inside picture he might still have to go for the colostomy.

Living with a stoma is very doable and leading an active lifestyle should be as your husband has now, many men and women engage in combat sports especially rugby with one or two teams made up of colostomates playing in a league in regular games. I honestly can't think of an activity that he wouldn't be able to take part in and still enjoy.

If you do go along the road of the partial intersphincteric AP resection and your husband is on the wrong side of the 50% would it be possible to go back to the surgeon for the colostomy formation and wearing of a pouch.

I think you have to ask the surgeon a lot more questions before making the final decision as this is about quality of life more than anything else and he has to look at the 50% chance, that he as a young man, may have to suffer incontinence for the rest of his life.

If I can go back to having a colostomy bag, not an Ileostomy bag (two very types of surgery) that after about 2 - 3 months he might be able to carry out a procedure called irrigation on himself. This means that every two to three days in the morning he attaches a tube into his stoma and introduces warm water into the bowel which in turn empties the bowel of a faeces, there is a bit more to it but that the basics of it, the end result is he wouldn't have to worry about emptying his bag as virtually nothing will be going into it and after a while he may decide he doesn't need a bag but opt for a cap instead..

Helen I don't know if I've been of any help or not, maybe given you both something to think further on and 2 weeks is not a long time to think about it, but one thing I can assure you of, is that I have never looked back since my ileostomy was formed and if I didn't have so many other medical problems I would be out living life to the full as thousands of others do with a stoma.

Just one more suggestion, were you introduced to a stoma care nurse before the surgeon threw his curved ball into the ring as she would be an excellent person to talk everything through with.

Can I ask one thing of you could you please let us know the decision you come to and how the surgery went.

We all like to keep up with members who are about to have surgery and the progress made, plus after the surgery you will probably have a lot more questions that you want to ask and I hope you know that each one of us will be here for you both.

Best wishes

Ian

(I own my stoma and I live my life with it daily)

CC

Hi Helen

I have had a permanent stoma since June 2019. I wasn't given any choice as my tumour was very low down in the anus. I have found living with the stoma is easy and does not have as big an impact on the quality of life as assumed. I am not exercising as vigorously as before but thats more to with getting over the APR itself than any restrictions caused by the stoma. If I were in the position of your husband I would go with the stoma, and it should be perfectly possible for him to do just about anything when it comes to sport and being active with your children. 

Hope that helps

Sean

Hi I had Apr surgery 2018 I was 45, I now have perm stoma I can honestly say I do everything I done before, I done zip lining, swimming, walking, work, dog grooming, the only thing that changed for me I can no longer have fresh cream stoma really doesn't like that.

I can say having my stoma saved my life my cancer was very low down to, I didn't want or even consider an op where I could be bowel incontinence as I feel I am to young to worry about having no control,

I wish you all the luck for the op 

Love bud xxxx

Thank you everyone for taking the time to reply to my post. I've been blown away at the generosity of people in the community to share information, opinions and advice.

The insights into life with a stoma have been very helpful. I suspect my husband Rob will take this route as it feels like it presents more certainty and more of an opportunity to take some control back which is important to him.

I will post again after his surgery on the 28th with an update and I am certain we will have more questions.

Thanks everyone for your support, I hope we can do the same for others in the future.

Helen x