Feeling Low After Procedure: Seeking Mental Health Support in the UK

Had my procedure, psychology struggling. I'm sure I'm not alone looking for help in the UK. Tried every avenue but to no avail, doors slammed in my face. Am I alone in this???

Hi Mark,

What struggles are you having?

To be honest, from the beginning, I had diverticulitis, then developed stenosis of the rectum. My hole closed up, and the man who did my procedure tore my anus. I ended up feeling like I had been abused, and now I have this bag that can't be reversed. So, mentally not coping, I start counseling after Christmas. It has been a struggle, to say the least.

Sorry for being so graphic.

Hello Mark.
Thank you for your post.
You are certainly not alone in the manner in which you acquired your stoma.
My stoma was a direct result of some butcher of a surgeon who decided to treat my piles by stripping the walls from the anus. This caused so much scar tissue that the hole closed over completely. 
After many procedures trying to put things right, eventually, after several years of incontinence and pain, I opted for a stoma. It took some getting used to, but gradually I adjusted and now I am grateful for it because it make life so much more manageable than it was before.
The mental strain is just as difficult as the physical pain and there is little point in giving advice on this aspect, because it is something that we need to work through ourselves. Counselling may help, and I wish you luck with that.
My own theory is that counselling is a process of helping/enabling people to help themselves. 
My preferred option was to take time out to write my thoughts down in rhyme. This helped me clarify more precisely what the problems were and how I might overcome them. My rhymes relating to stomas can be found in the 'collections' section on here, as I did think that some of them might be worth sharing.
One of the things that also helped me was that I adopted the attitude of 'What's done is done' and I was not going to let it ruin whatever life I may have had left.
That's sometimes a hard position to maintain when occasionally I look back and become resentful about what happened. However, I put this down to the PTSD aspect of the 'trauma', which has the characteristics of 'flashbacks'. 

The way I deal with these is a sort of repetition of how I got through the trauma in the first place ( a sort of 'practice' effect).
I don't envy you being at the early stages of what is a physical and emotional journey, but if there is anything I can do or say that might assist you in any way, just let me know. 

I am sure that this invitation will be forthcoming from most other people on this site, so don't be shy to speak about the way you feel, and certainly don't be concerned about 'being graphic'. We have all been there and know what it is about and being 'graphic' can sometimes help to get it off our chests.
Best wishes

Bill

Hi Mark,

You're not alone. Most of us have experienced similar feelings or maybe worse, to make you feel a little better.

It's hard physically and mentally. What got me through it was thinking I have been given a second chance to live again, so I'll make it a positive one! My operation was during COVID and I had very little chance of getting out of the hospital either because of a toxic colon or catching COVID. Not being able to see family and friends was the cherry on top.

Watching videos of fellow ostomates on YouTube/Instagram motivated me and got me on track again.

There are plenty of different bag styles/suppliers, so do try different ones as they can mentally make you feel better. Coloplast works for me, but it depends on individuals.

It's okay to have a bag and you can do normal things once recovered. 👍

All the best! Dharms

My circumstances were very different from yours, so I'm not going to lie and say I know what you're going through. Pleased to hear you start counselling in January, just wish it was sooner for you.

I believe talking is the best therapy, be it on here or with family and friends. I know it can be much easier talking to someone you can't see. Have you phoned any of the UK bowel charities? They have a 24/7 Freephone number. I can't post their numbers; admin would delete them. The ones I'm thinking of are the Ileostomy & Internal Pouch Support Group and Colostomy UK. Their numbers are easy to find if you Google them.

Thanks for the kind replies. It was hard going to a group for people with stomas. I was told I can't talk about my experience there as others may be more sensitive. That is not what I thought groups were about, so I decided to sort it out for myself with a professional one-to-one. I'm sure for me that's the best thing, as like others here, we're in it together, and I am so very grateful for the support and kind words.

Some days are up and some are down. I'm just glad we are all here to see how it goes.

Sorry to hear about your situation. This website is where you can be as graphic as you feel comfortable. All members here have, or had, an ostomy. We have all suffered, survived, and now share our experiences.

What happened to me:

Hernia repair mesh from over a decade ago migrated into my bladder and colon. My colon was punctured, causing sepsis, C. diff, and peritonitis infections. I underwent 7 hours of exploratory surgery resulting in complete mesh removal and a permanent colostomy. Fortunately, my bladder wasn't punctured. I lost over 60 pounds, was malnourished, and could hardly walk after my 28 days in the hospital.

I know having the stoma is tough. Mine sticks out quite a bit. Also, I developed a peristomal hernia, which makes it stick out even more. But I don't let it get me down. I'm a year post-op and have made a full recovery. I have a very hard time mentally. For the first time in my life, I couldn't summon up my inner strength and carry on. I was like a passenger on a doomed airplane going down.

At my lowest point, I asked God to help me. And I was saved and gained faith.

I cannot speak about my illness and hospital time to anyone. I break down. I will never get over it. And that's a good thing. Having been shaken to my core, each new day is a blessing.

I close with my favorite verse.

Psalm 18: 6, 16

In my distress I called to the Lord; I cried to my God for help.

From his temple He heard my voice; my cry came before Him, into His ears.

He reached down from on high and took hold of me;

He drew me out of deep waters.

Hang in there, Mark. You are definitely not alone.

Hey Mark! You already got plenty of answers, just let me add that here you will find someone answering you 24/7... the beauty of a worldwide group ;-)

And we're not skittish! We all have our stoma :-)

Hi Mark

You have done the hardest thing by getting help; that's the biggest hurdle. You can see from everyone on here that you are definitely not alone. Although some may be far away, you can bet that someone will be a great listener, shoulder to cry on, or even scream at. Xx

Hi Mark,

I am still waiting for my stoma, provisional date is Jan 4th. I go round and round in circles in my head, sometimes trying to convince myself I don't need the op and other times, usually when the pain comes and the half-digested cow pads, I think "this is why I need this op." It's a mental turmoil. Like yourself, many have no choice. I am having to make the decision and am terrified I am making the wrong one. I get comfort when people say the surgeon would not be doing this just for fun. I have diverticular disease that is out of control, fatty strands, and I suspect now narrowing. I am shocked, however, that you get no help, and I think in an earlier post you said you didn't get help from a colostomy nurse? Where on earth in the UK did you have this procedure done? It's one of my fears that I will have the stoma and then just be left to "get on with it." I live in Powys, Wales, and there is not a single stoma nurse in Powys. Apparently, there are not enough patients! But everyone I talk to knows someone that has a stoma, including a little girl in the local school who is 6 years old. When this is over and I recover, I am thinking of setting up a group myself. It's mentally draining to have to have this procedure, but to have no follow-up after is cruel, especially in circumstances like yours, where it was the fault of malpractice. (I think I remember right that the colonoscopy went wrong.) I have been thinking about you since I read your first post. If you were ill before the colonoscopy, maybe it would help to think along the lines that you may have ended up with a stoma in the long term? When I had to make the decision, my stoma nurse said two things to me that stuck: I would probably end up with a stoma anyway due to the incontinence, and the other was, "You do not, and I repeat do not, want to end up here as an emergency with a perforated bowel," as that had nearly happened the year before. However, if your colonoscopy was just a routine check to rule out any problems, well, there are no words. I hope what I have written might make you feel less alone? Especially mentally, it's draining, and I haven't even begun my journey yet! Anyway, have the best possible Christmas you can. I will be thinking of you. Your story has really had an impact.

Hello Victoria Elsbeth,

Welcome back to the UK! Norway is a lovely country... and Mid Wales too!

I am not a premium member but am within 20 miles or so of you. Contact if you so wish. I believe premium members are able to email those of us who are not.

Although all our circumstances leading up to the formation of our stomas are unique, as are the journeys we subsequently travel, a shared concern can be helpful, particularly positivity and a broad balanced perspective. 

With any run-up to surgery and follow-up clinical appointments, there are varying degrees of anxiety. We would not be human if we felt no concerns!

However, lack of knowledge and professional responsibility is a very different thing. All on this site extend their best thoughts when we hear of circumstances where vulnerable folk have been left to deal with their circumstances without any recourse to proper support.

My own wishes for all of us is "try to stay positive, but be strong and be open to learn" - how one may be able to help oneself moving forward in the ways that are best for each individual.

Best wishes,

Jayne

BeachBoy,

I feel for your response here - and empathize with what you express.

Naturally, I am a very private person - certainly about one's own physical challenges - and like BeachBoy, historically, have been unable to express my personal feelings, so far as my medical life - wellness and illness - is concerned in a manner that I feel they may be fully - as in empathetically - appreciated. Even for those of us who have a collected similar list of events within our medical history, we all deal with them differently.

It is only relatively recently - within my 69th year - [And I self-view myself as 30-something, and always will] - that I have found it necessary to actually take on a very different state of being - and that has actually been 'propelled' out of necessity, i.e., I have needed to follow a route whereby the circumstances of my medical experience, specifically with medical trial procedures, have caused me to not bury myself in a passive 'abandoned' state.   

Sometimes there is a need for a very different stance going forward.

There are many of us here that are very strong people, and able - for the most part, to "move mountains" when we are called to do so... BUT and there is a very big BUT, we actually take on a state of being as a consequence - and although we may "look OK" on the outside - often we are near to crumbling within.

And indeed are in that very place of 'doom as we are trapped in the descending aeroplane 'going down'.

So much can be said about compassion, and there IS empathy among us... BUT at the end of the day when we are within our own selves - even sometimes, when we have loved ones who do care - it is US - the core "little me" and our inner love for ourselves, that, when we finally allow love for ourselves, which, ever so gently, and ever so gradually, allows our simple little us within to keep body and soul together... It's only THEN when the unforeseen propels us from our comfort of the 'usual' and makes room for ourselves.

Even now, after many, many circumstances which have called to me to be more open to learning to 'love myself' - even NOW I have so very much to learn.

And maybe like BeachBoy, I actually have a big challenge to openly talk about the real impact of accepting the ultimate of weakness because I have always been so strong - no matter what!

In my humble opinion, THIS is where the real learning takes place... from within our most vulnerable self - we begin to truly know ourselves.

.

Best wishes to all, in whatever state of being when reading folks' thoughts...

There are only good thoughts worth transmitting...

So here I send my best thoughts

Jayne

Very well stated, Jayne.

Aside from the physical nature of having a stoma and surviving surgery... I think the toughest challenge is mental. Many ostomymates describe "post-op" mental condition as PTSD.

I agree. It takes time to heal physically and a lot longer to recover mentally.

Take care,

Dan