Feeling low

Replies
15
Views
417
Mark1

Had my procedure sycloigy Strugling I'm sure not alone looking for help in UK tried ever avenue but to no aviale doors slamed in face am I alone in this ???

Beachboy

Hi Mark,

What struggles are you having?

Gray Logo for MeetAnOstoMate
Top 5 Collections
Mark1
Reply to Beachboy

To be honest from the beginning I had diverticulitis then developed stenosis of the rectum my hole closed up the man who done 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 councling after Christmas been a struggle to say the least 

Sorry for being so graffic 

Bill
Reply to Mark1

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

Dharms

Hi Mark

Your not alone, most of us have experienced what similar feeling 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 opp was during covid and had very little chance getting out of hospital either because of a toxic colon or catching covid. Not being able to seeing family and friends was the cherry on top.

Watching videoas of fellow ostomates on Youtube/Instagram motivated me and got me on track again.

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

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

All the best! Dharms 

 
Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
Ben38

My circumstances were very different to yours  so I'm not going to lie and say I know what your 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 there numbers admin would delete them, the ones I'm thinking of are the Ileostomy & internal pouch support group and Colostomy UK there numbers are easy to find if you google them     

Mark1

Thanks for kind replies is hard was going to a group for people with stomas got told can't talk about your experience there as others may be more sensitive not what I thought groups were about so decided to sort for my self with a professional 1 to 1 I'm sure for me that's the best thing as like others here were in it together and I am so very greatfull for the support and kind words 

Daisy2023

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

Beachboy
Reply to Mark1

Sorry hear about your situation.  This web site 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.

Downtown

Hang in there Mark, you are definitely NOT alone. 

Happy-but-Newbie
Reply to Mark1

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 :-)

Caz67

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 maybe far away you can bet that someone will be a great listener, shoulder to cry, or even scream at. Xx

victoriaelsbeth1990

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 dont 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. Its 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 stands and I suspect now narrowing. I am shocked however that you get no help, and I think in an earlier post you said you didnt get help from a colostomy nurse? Where on earth in the UK did you have this procedure done? Its one of my fears that I will have the stoma and then just 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 over and I recover I am thinking of setting up a group myself. Its 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) 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 too 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, its draining, and I havent 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.

Jayne
Reply to victoriaelsbeth1990

Hello Victoria Elsbeth,

 

Welcome back to 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 Journies we subsequently travel, a shared concern can be helpful ... Particularly positivity and a broad balanced perspective. 

 

With any run up to surgery - and  followup Clinical Appointments, there are varying degrees of anxiety - we would not be human if we felt no concerns!

However lack of Knowledge and pofessional 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

 

 

 

Jayne
Reply to Beachboy

BeachBoy,

 

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

Naturally I am a very private person - certaiily about ones own physical challenges - and Like BeachBoy historically have been unable to express my personal feelings, so far as my Medical life - Wellness 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 ie I have needed to follow a route whereby the circumstances of my MEdical Experience, specifically with Medical Trial proceedures - has 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 consquence - 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 decending aeroplane 'going down'.

 

So much can be said about compassion, and there IS empathy amoung us .... BUt at the End of 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 ...... Its only THEN when the unforseen propels us from our comfort of the 'Usual'and make 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 Beach Boy, I actually have a big challenge to openly talk about the real impact of accepting  ultimate of weakness because I have always been so strong - no 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 folk's thoughts .....

 

There are only Good Thoughts worth transmitting ......

So hear I send my BEst Thoughts

 

Jayne

Beachboy
Reply to 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.  Takes time to heal physically.  And a lot longer to recover mentally.

Take care,

Dan

* Please, do not post contact information, personal information or advertising.
All times are GMT - 5 Hours