Hospital update and feeling anxious and panicky

I saw Mr Brown yesterday and the plan is for yet another surgery, it will be in the new year.

I have two large hernias and they are causing daily, almost constant pain. One is behind my stoma and one is in the old stoma site.

I also have a 6.6cm cyst on my ovary that I’m not sure if it’s causing pain or not as my whole abdomen hurts so who knows what is what.

Mr Brown wants to bring a new surgeon in to work with him, he specialises in complex abdominal problems and due to having so many surgeries, I’m filled with adhesions and scar tissue.

Theyll also be working alongside a gynae surgeon to remove the cyst and possibly my ovary, so it’s all hands on deck!

I just feel sick that this is happening yet again, I’ve really had enough and honestly it doesn’t get any easier, every surgery gets tougher and tougher. Ignorance is bliss when it comes to knowing what recovery is like and I’m so anxious and scared.

Ive used up all my sick pay with having two surgeries this year so any time off work will be unpaid which is super stressful, I know I need time to recover but knowing it will effect our income adds more pressure.

Im writing this at 4am as I can’t sleep for worry. I’m also coming down with some bug as I’m hot and cold and coughing and feel crap but when you have a chronic illness sometimes it feels like you can’t take time off for “normal” illnesses.

I know I’m just having a middle of the night panic but everything just feels very overwhelming right now.

I just want to be well.

Im sick of being in constant pain, it’s so draining. I’m sick of taking painkillers every day though I’m relieved to get some better pain relief today from the GP. But it’s a constant weighing up of being in pain and being able to think straight and taking drugs and feeling dizzy and not with it.

Its the first time since I started working for Scope when I’m actually wondering whether I can cope with it all. I love my job but right now it’s causing me to worry. I worry about how my illness affects my team, I worry about whether I can cope and I worry that if I don’t work, whether we can afford to live the life we do.

Theres not much positivity in this post but as always, it really does help me to be able to blurt all this out here so thanks for reading and I hope that in speaking about the tough times, it helps others to know they’re not alone.

I hope things feel a little brighter when the sun comes up

 

✌🏽& ❤️

Sam x

7 replies
  1. Derek Horton
    Derek Horton says:

    I can really identify with this. I also have very big hernias, associated with a former stoma site, and I have multiple fistulas which are much harder to manage than my stoma. I basically have no abdominal wall at all, and my doctor has concluded the risks of any repair surgery are just too great now. I know you will be feeling miserable bu I really hope the latest operation works for you. You are a massive inspiration to me and lots of people. Stay strong! Thinking of you and wishing you well.

    Reply
  2. Bruce
    Bruce says:

    I am so sorry that you are having to go through this again…especially so soon. Sometimes it feels as if we are given to much for us to handle. So much piled on our plate all at once and (it seems) no way to see around that problem. When we try to carry that load by ourselves, it only gets heavier. Allow those around you to help you carry that burden…that pain. You have many near you who love you dearly and will help you in any way they can.

    The difficulties that your medical problems might cause to those around you is is very minor in comparison to what you are have, and will be, facing through these additional surgeries. Trust that those who love you will continue to stand by your side just as they have in the past. Know that the problems that you face are of through no fault of yours…but it is something that you must face. Do not try to face it alone.

    Reply
  3. Angela Turner
    Angela Turner says:

    Bruce says it so well and I agree with him; it’s time for you to lean on your lovely family & friends and let them carry some of your burden. Sounds like you have a good team of specialists in place to do your surgery. Ever the optimist I really hope this is the surgery that allows your mind and poor body to find peace as well as time to heal properly. On another note – please don’t be offended – I know you are a proud and independent person but it may be worth considering asking one of your close friends to start a crowdfunding page for you to cover the costs of your recovery period? You have a huge following out there who – like me – just want to see you happy and healthy (as you can be with a chronic illness); it would allow us to do something – anything – to help you heal. It would also give you a huge boost of positivity and love that would definitely aid the healing process. Totally believe in the power of the universal conscience.

    Reply
  4. Robin
    Robin says:

    As I told you in my reply to your BBC post, I also have a double hernia. They operated on mine and used the mesh to try and shrink them. I am sorry to tell you that it does not always work. Although the pain is not as sevier as it was I still get pain, especially on the hernia under the stoma. Sometimes it feels like a knife is being pushed in from the center of my abdomin and under the hernia. The one on the left of my body is not so bad and the pain there is more like a constant ache.

    Since I had the Illiostomy there has been one worry after another. First worry was ‘Is it cancer?’ No, it was Ulcerated Colitis. Second worry, ‘Will they find cancer in my bowel?’ No, that was clear. That was rapidly followed by the revelation that my stoma was permanent. I just didn’t know how I would be able to live with that. Then came the operations, yes, I did mean plural, to seal up my anus. This took three attempts because it would not seal dispite the best attempts of the District Nurses. Then what seemed to be the final straw. While out walking I actually felt my hernias pop one after the other. My first instinct was to try pushing them back which obviously didn’t work, so then followed several operations to cure them, the final try being the mesh.

    I don’t know if it is the same mesh, I have tried to find out, but I have read recently that one mesh has been causing problems, mainly on women, where it has been used in ‘Trans Vaginal’ surgery, but it has also been used with hernias. Google ‘Problems with surgical mesh’.

    Mostly I now feel comfortable with my Illiostomy, but every so often I just feel like glueing something over the stoma so that I never have to use another bag. Luckily that doesn’t last long. My ex-wife was very supportive and still is, but I made the great error in leaving her for someone else and my new partner wants nothing to do with it to the extent of not touching the box my bags are delivered in.

    Good luck with your op, I hope your pain goes away.

    Reply
  5. pauline
    pauline says:

    I feel so sorry for you and I can only imagine what you are going through after so much. I have been so lucky with my surgeries. I had the ileostomy and proctocolectomy initially with not much trouble after. Then I had hernia surgery which hurt like the clappers but since then I’ve been relatively fine except for a bit of depression.

    To face yet another surgery is really tough but I know you will get through it. You help so many people with your blog. You have a wonderful family and friends. Don’t worry about a job, worry about getting well. I agree with the crowd fund page.

    Reply
  6. carol griffin
    carol griffin says:

    You are in my prayers. Thank you for sharing the high points and your low points. You are a beacon to all of us who have problems. I try to be positive but understand your fears at 2 or 3 am. That’s when I’m awake and fussing too. Try to get as much rest as you can before the surgery.

    Remember, you have a brigade of angels all pulling for you.

    carol

    Reply
  7. Helen Harfield
    Helen Harfield says:

    I don’t know if it applies- you may already have explored, but there is ESA (employment support allowance) for when you don’t eat any statutory sick pay. May be worth exploring. It’s not much, but better than zero! They don’t make it easy to claim, and a lot of paperwork- I would start it as soon as you have a surgery date.

    Good luck and I’m so sorry this is happening to you again. Xxx

    Reply

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