Coping with Anxiety While Awaiting Medical Results

Hi, I was wondering if anyone can relate?

I recently had a dye cast enema and scan to see if I am able to have an ileostomy reversal after 12 months and am awaiting results. If all goes well, this might happen around Christmas time this year, which is what I want after stage 4 colorectal tumor removal 8 months ago.

The question is… My mental health has become really fragile over the last month, which has never happened before in my 58 years. Have I worked myself up to this state, or can it be seen as PTSD? I have spoken to mental health professionals via phone only, who have fallen short of hitting the nail on the head. I am losing faith in them as I have shared my intimate thoughts that I haven't shared with my family or friends, and they have not been able to assist.

I am not looking for recommendations to professionals, but stories from the online community that are or have experienced similar issues.

Thanks in advance, and God bless.

G-Day Gary,

If the reversal is what you want, I hope the test says it's OK, but I am more worried about your mental health. I think a face-to-face, not a phone call, would be good.

I have read your notes, and you say you are doing OK with your ileostomy. I had a J-Pouch fitted 22 years ago, and it was a disaster for 18 years, always looking for a toilet, and it is painful. So, 4 years ago, I went back to an ileostomy, and now my life is perfect. I can manage my stoma well, and there are no problems.

Give some thought to keeping your ileostomy, but get your mind into gear first, and not on a bloody phone; go see a good person.

I am sending you good vibes and hope you get to where you want to be.

Regards, IGGIE

Can't agree more with Iggie.👍

Get your mind set properly.

It sounds like you are comfortable with the ileo, managing it well compared to other newbies.

You stay here and get the good advice from members. You are not alone in your thinking.

You have time. Sometimes that's good to research. Other times not so good. Some folks here never had the time to research due to the urgency of surgery—being a life or death situation.

Thank you, IGGIE, for your kind advice.

Two things, sir.

1. Why would I consider keeping my ileostomy, and how would this benefit my health and well-being?
2. What is a “blood phone”? If it's a typo, it shook me a little, as I don't understand the terminology. I do appreciate your help with this question. Many thanks, Gary.

Bloody Phone Mate. As for considering keeping your ileostomy, you said in your original notes that you were handling it well. Then consider the devil you know as to the one you don't know. So many reversals end up in a shit mess, so do a lot of research and then make your decision.

IGGIE

How to Manage Emotions with LeeAnne Hayden | Hollister

Gary, do you know how much of your large intestine is left? This is critical for a successful reversal.

That's one thing to ask the surgeon.

Some forum topics address the reversal. Some members have success. You can read their stories and contact them directly.

I think what Iggie is trying to say is, if it ain't broke, don't fix it.

Your ileo is working, and you seem okay with it. Your head is someplace else, though. PTSD?

If your reversal fails, you have an option to go back to the ileo.

Some members had that done.

Your surgeon should be able to explain the pros and cons of a reversal. If he can't or doesn't, we welcome your questions and can help you.

Gary,

I do not have the option of a reversal - as it appears you may have .... However, it seems to me - in my particular circumstances, that in my particular case, when I had thought I was going to have the potential for an alternative option to the ileostomy external Brookes collecting pouch, that I had had for 40 years, - namely, when I volunteered for a clinical trial to try a novel implant titanium device to negate the need for a pouch - THERE IS MUCH TENSION, EXPECTATION, AND "INTERNAL" stress that we harbor inside of ourselves: - We try to protect those near and dear to us and hope that we can overcome our challenges and generally be 'the island,' as it were ..... When, in actual fact, maybe the mental/emotional toll takes a deal of time to work through and process.

As has been said by others, it is not always apparent how we deal with our various journeys, and there seems to be a delayed 'fallout' that some of us try to contain, but end up being rather more overwhelmed than we 'thought' we might - i.e., we all 'cope' differently, over time.

Please try to be gentle with yourself, for over time, in my experience, there are a range of emotive states we pass through .....

And sometimes our 'stability' becomes really shaky.

Stay with your own best intention, and try to open up and not feel one has to shoulder all the 'difficult' patches that can manifest - because, I too, was deeply surprised by a number of really difficult emotions my implant/explant caused ..... the whole experience for me was a far cry from the 'walk in the park' that potentially a successful outcome may have been.

I know a number of folks may wonder why I touch upon my own experience when answering your own specific route of questioning ....

And it is simply this: "We need to learn to be gentle on ourselves" - for whilst we may be really fortunate with a loving family, helpful caring loving partners, children, grandkids, and a great bunch of friends ..... there is no one like our own simple 'Inner little Me' .... and for us to fully accept what we have experienced, we NEED TIME, and we need the space, to grow the TRUST, and grow the hope in order to come into a place of comfort where we can be 'at one' with our feelings. There is no shame in this - we are actually the more beautiful BECAUSE of it - but sometimes we only FEEL this as we progress past our own inner fears.

It seems to me that for the process of the roller coaster of surgery, coming to terms with the ostomy, and being offered the possibility of reversal/alternative options for our current state of 'learning'/management is just in itself a TRANSITION of what may become possible in the future.

One sure thing is that we have been through change - and some changes take time and processes to fully accept and adapt in many ways - and we can NEVER become the person we once were 'before' and so, by degrees, we slowly evolve into the butterfly we will grow into and take on - gently, and wholly, the person we continually live to 'become'.

I do hope that you find an inner calmness, through which different states of being you start to be comfortable within yourself.

Believe me, sometimes the phases of our journey are rather longer than we previously thought possible .....

But I believe, with hope and a self-gentleness, we do, bit by bit, become more comfortable within ourselves ......

And so, not only do we become comfy within ourselves, so too do those around us become more assured that we are 'coping' and are happier in their/our associations.

You have possibilities, you have concerns, and by the very nature of change, you have a number of uncertainties ....

Bit by bit .....

Maybe, perhaps try a list of both pros and cons [two columns on a big piece of paper] and gently resolve element by element where your true feelings are having the difficulty/ies and then perhaps it may become clearer over time to come to a point of easement and a calm clearing within the forest .... For tomorrow is another day - please give yourself the time you need for the sun to come through

........ For it will, trust me.

Best wishes

... we are stronger than we think - but it's OK to SURRENDER TOO!

Jayne

I have to agree with what others have said here, unless I'm misunderstanding you. It seems that you are tying your declining mental health to the prospect of not getting your ostomy reversed, or is it just the long wait to have it done? If you are managing well with your ostomy, why would a little extra wait be a problem? If you are worried about the outcome, then maybe it's a good idea to consider not having it reversed. As Warrior pointed out, the amount of colon you have left will play a big role in your chances of success, and there is reason to be cautious about this decision. You have lived with an ostomy for a year and seem to be doing well, so why take the chance of making things worse? At the very least, I think you should have another conversation with your surgeon. I have an ileostomy, and my surgeon told me a reversal was a possibility for me. I did the research and decided to stay with, as Iggie said, the devil I know. I wish you luck and let us know how you get on.

Terry

Hi Gary,

It sounds like others, including myself, are wondering if your mental health issue started with the waiting game to hear if reversal is a go…

Do you feel like if the answer is yes, your mental health will go from fragile to something more stable?

There is medical PTSD and a newer term, C-PTSD, which is complex PTSD. My medical PTSD was triggered once when I was supposed to be sedated, and a nurse said, “breathe like when you're in labor.” She had no idea I had almost died during childbirth with my first child. I blew through enough fentanyl for a 300 lb man (I'm not a big person), and they couldn't finish the procedure.

With GI surgeries and the issues that led to the reason for surgery, the signals between the gut and brain can be disrupted. I joined a program through the clinic I go to for GI health that includes help from psychologists.

https://www.mind.org.uk/information-support/types-of-mental-health-problems/post-traumatic-stress-disorder-ptsd-and-complex-ptsd/complex-ptsd

Thank you for your kind response. I will definitely check out this site.

I am sorry for your experience and hope you have found some comfort and peace in your journey.

The answer to your question on when the mental health issue started is that it has sort of gathered speed in the last couple of months and is coupled with increased neuropathy and discomfort from chemo and radiotherapy.

Do you find psychological support benefits you? I have found that this approach for myself is minimal. I understand that it is not for everyone, but the first piece of advice I am given every time is to seek professional help; however, I feel I get better results from speaking online with people like yourself.

Again, thank you for taking the time to answer, and good luck on your path to health and well-being.

Kind regards, Gary

You get the reply from many folks-

"Seek professional advice."

Because you know the professional has your history record. We don't.

The folks who reply saying that reduce their liability.

We can only offer suggestions.

Some advice, but with a disclaimer as "this worked for me... it may or may not work for you." We are not professionals but have gone through the mill with various illnesses...

And offer our sincere advice.

There's a logical reason you see or hear "check with your doctor before starting this."

Getting feedback from people that are in your shoes is priceless. It will make you feel at ease and comfortable. It's not a prescription, though.

Gary,

The simple answer to your question, have I benefited from psychological support?

Absolutely.

The reason I mentioned a PTSD trigger of mine is to draw attention to how powerful our brains are… if I were given a high dose of that medication now when I am relaxed, I wouldn't fare well. But that fight or flight response counteracted how it should have been able to affect me. My brain, my mind did that.

I recognize I am privileged to have access to the specialized care that I do. The digestive disease department where I receive care has psychologists that just work with digestive disease patients like myself. The day after I found out I was going to lose my colon, I called the department and in tears left a message asking for help. The psychologist I was paired with worked with me leading up to the surgery, during my hospital stay, and for a couple of months after.

Now if I have a nutrition question, I'm going to ask my dietitian.
I had an accident last fall that has required neurologists, neurosurgeons, orthopedic surgeons, chronic pain specialists, physical therapists… different parts of the body = different specialists.

Unfortunately, brain health (I'm including psychological under this umbrella) carries a stigma still.
But if I were having pain from my heart, I sure hope someone would direct me toward a rockstar cardiologist.

Support from others on a similar journey is, like Warrior said, priceless 🙂

Jodie,

Such a pertinent post - indeed timely, appropriate, targeted help is priceless ... and yes, you are a very lucky girl!

Hope all is well with you - particularly following your accident.

Let stigmas fade and an openness and target for excellence be the aim of all involved in health care - it makes such a big difference when those who are truly engaged with the service they are focused to share cause such individuals to stand out from the crowd ...... For, sadly, it can be a fact that some folk who have 'jobs' within the health care - whether a state system or privately funded treatment - have chosen to "do" the 'job' they have, as some sort of thought that they will have a 'job for life' - and not in the good dedicated sense of the concept.

"To excellence" - and also let's also celebrate the intention for us all to have hope and do our research and allow ourselves the time to be kind to ourselves ......... for there is much that can be achieved through cultivating an ability to help ourselves.

Thank you for putting up this post - and sharing some of your own most personal experience - which all adds up to a 'Beautiful Person'

~ ~ ~ ~ ~ Waves from the UK ~ ~ ~ ~ ~

Best wishes

Jayne

Hi Jayne!

Thanks for the kind words. Many of us forget to be kind to ourselves… it is easier to extend that grace to others than to let ourselves rest, heal, and be well…

Send me a message and let me know how you're doing; it's time to catch up! 🙂