Feeling alone and scared

Hi . Please don’t feel alone - everyone on the board will be happy to help and support you. Did you mention the pain that you’re still in to the surgeon? I was told that recovery is about 5 weeks so you should be feeling a lot better by now. Perhaps you could give your Colorectal Nurse a ring for guidance?

I wouldn’t have thought they would consider a reversal until after you’ve fully recovered from this op and then they give you an appointment where they will check that the bowel rejoin is fully healed. The surgeon will always have to give you the possible problems with a reversal but presumably he considers that you have enough rectum remaining for a reversal to be successful? Reversal experience can vary. You will never go back to how you were before surgery but will get used to a ‘new’ normal. It can take several months (in fact up to a couple of years) to settle down but I have absolutely no regrets. You may find this post that was written a few years ago helpful 

https://community.macmillan.org.uk/cancer_experiences/ileostomy-and-colostomy-discussions-forum/f/ileostomy_and_colostomy_discussions-forum/188680/part-2---the-faqs-of-having-a-stoma-reversal

To be honest I would focus on recovering from the op first. The reversal can come later and I don’t think many are done during the hospital winter pressure period anyway so you can have a think about it

Take care and feel free to post if you’ve any questions or worries 

Karen x

Hi Kareno62. Thank you for your answer. The link was very helpful and answered a lot of questions I had.

You wrote: I wouldn’t have thought they would consider a reversal until after you’ve fully recovered from this op and then they give you an appointment where they will check that the bowel rejoin is fully healed. 

My appointment with the surgeon is middle of December and the reversal is set in January 22. I'm far away from fully recovered. Without oramoph I won't be able to do simple tasks. 

What should I do? In your link is the information that there s no time frame for a reversal. I'm so confused. I don't want a reversal so soon. I wish I could wait couple of more weeks or months. 

Thanks

Hi Ananas,

I am only replying to you because my husband is 5 weeks from having a colostomy. There is no way we would be contemplating a reversal so soon. We haven't cracked this bit, yet!! He has had pains on and off, but I think the more he is walking and eating, the better he seems. I'm guessing he is much older than you, and takes it slowly. 

I had a hysterectomy at 72 and had pains for quite a time afterwards. Make sure you are getting enough rest. I'm sure any consultant would listen to your wishes. xx 

Hi . Personally I would keep the appointment with the surgeon especially if you’re still struggling and then ask him to postpone the reversal until a later date if that is better for you. There is no set timescales for a reversal to be done within. I had my op in Nov 16 followed by a few hiccups and then chemo. My reversal was in mar 18. I was talking to a lady on a follow up course I went on and she’d had her stoma for 5 years before having it reversed. 
They won’t ‘force’ you to have a reversal and you will have to sign a consent form for the op to go ahead so just tell them that you’re not mentally or physically ready and can you postpone it for now?

Take care

Karen x

Hi Ananas 

Hi Anans

I had my surgery in August and was told they would discuss a reversal at my 6 week follow up with a view to reversal in November. I really wanted this but was a bit worried that was a bit soon. However at my 6 week follow up with my surgeon he said the reversal would be discussed at my 12 month appointment in August 22 I thought that seemed too far away so we agreed to discuss it at my 6 month follow up in February! They want to make sure I'm fully healed to give me the best chance of the reversal working and pooing properly again with minimal side effects. I personally think they told me 3 months because they knew how much I didn't want the stoma (Ileostomy).  

As far as the pain goes deffo check it out with your stoma nurse and specialist nurse but also try not to feel too down.  I discovered this group about four weeks after surgery when the area around my stoma was so sore and I was getting lots of leaks and like you I felt very low and alone.

It does get better, honestly it does, the pain gradually subsides and managing the stoma gets easier every day, don't be afraid to ask your stoma nurse to try different products there are loads out there!

Aside from your family issues remember it is normal to feel sad and teary following surgery - the anaesthetic can cause this and you've been through so much and are only just getting to a new normal so don't be too hard on yourself.

Take care 

Melly 

Hi Ananas

This is the best place to be, there’s lots of us that have been through what you’re going through and lots are the other side. 
What fantastic news to have the opportunity to have a reversal   My LAR was August 4th and I wasn’t pain free for at least two months. I weaned myself off opioids slowly and substituted to off the shelf. My GP was supportive and gave me slow realise. My operation was very invasive so I had pain that was at times really bad. I felt like I’d been hit by a truck. 
I had a follow up at couple of weeks then two weeks ago another follow up with my results of the gastrografin test. Which is absolutely nothing to worry about. Easy peasy. The results then show if the bowel has healed and no leaks. I need another test then I will be put on the list. In Bristol it can be six months waiting list for reversal as it’s a small op they fit them in around the longer ones. 
Im sure that you will have the blue dye test before you will be put on the reversal list. Hopefully if you contact your team they can reassure you. 
I hope your pain level improves soon. 

Thank you Karen, the surgeon did explain clearly that the stoma has to reverse in a time frame otherwise I have to live with the stoma bag permanently. When I read your information and the details from discussion forum part 2 then I don't understand why the surgeon is giving me wrong advice. I asked him if we could wait one year or so, until I feel much better, he said latest January 22 or permanent.it feels like he will force me into the reversal. My pain around my tummy, special stoma area could come from the back but we are not sure. No painkillers helping me. The Oramoph only a short time. The surgeon said that the reversal wouldn't changed that. 

I will ask him again to postpone the reversal.

Thank you, Chrissy x

Hi. Tramadol worked for me. I had liquid Oramorph as well but didn’t need it once doctor gave me slow release I spread taking them over 24hours which really worked and I was able to get around so much better

im not sure why there’s a rush for your reversal I would phone yout MDT team my nurses have been fantastic explaining in lay man’s terms. They’re amazing. Maybe worth giving them a ring for reassurance and explanation on why the time frame. In my case my surgeon said could be three but depending how busy they were it’s now six but definitely before a year as he said the bowel can be more difficult to get working after that time but not impossible. I know covids hit the hospitals bad. 

Hope you find out the reason for your surgeons quick turn around

Oh my love this made me so sad. I have seen your lovely supportive posts to others and had no idea you are struggling. Pain takes over everything. You need to see your doctor ASAP! I want to give you hope about the reversal. It is early days as you need everything to heal really well first. My case is a bit different in that I had an Ostomy and had my Stoma for a year and had it reversed two months ago.  For a month afterwards I kinda regretted it as I read things like "you never go back to normal" etc. Usual horror stories! I can report that I seem to be out of the tunnel already! One month: couldn't leave the house without wearing a nappy! 6 weeks : calming down a bit. 2 months: I am going to the toilet 2/3 times a day, controlled,  comfortable, gradually eating more variety sticking with small meals. Looking back on it 8 weeks is nothing, to be free of my Stoma and "normal" again. There is hope. And please keep posting. Btw I noted everything down so any questions you may have just fire away! Love you.