What is normal?

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PeaceLoveFly

Hi! I’m new to this site and the ostemy world. My story is very different from any I’ve read. In March 2021, I gave birth to my kiddo. Thank god he is doing well. During my birth I almost died. I remember the doctor screaming at the nurses about needing more suture kits, passing out/loosing consciousness, and just having the most traumatic experience possible. I never felt the need to push, the doctor told me to start pushing….. my child got stuck, the doctor used the vacuum not once, but twice, and when he pulled my kiddo out, my partner said that I split open like the Red Sea. The birth was one of the most traumatic things I’ve ever experienced. Post birth, for over a year, I had a recto vaginal fistula, where I was pooping out of my vagina for over a year. I also did not have a sphincter attached during this time. April 2022 I had my first operation. They went in to fix the fistula and sphincter. They did an overlapping sphinctoplasty at the time. After months of not healing and having so many issues, I wound up with a drain from the colon out the perineum, in March 2023. In May 2023 I had a surgery done where they tried to make a flap, using my colon, to help cover the damage to the colon. That surgery was a complete failure too. After months of being told I’m nuts by the doctors, I went to Mayo. Thank god I did. They took my case seriously. They got me in for tests and surgery asap. December 6, 2023 I had a loop ileostomy done at Mayo Clinic. They found a hole in my colon where both the doctors were able to stick their fingers into the hole…. They found the sphincter is not attached and that there are so many lesions and so much scar tissue throughout my uterus/pelvic floor, the recto-vaginal fistulas (yes, now we know there are more than 1) are back…. Never in a million years would I have thought that childbirth would result in having a bag, but what is normal anyways……

I’m struggling a lot with the mental side of this procedure. I’m very thankful for it too. For the first time since childbirth I can sit in a chair without pain or my cushion. I am not having bowel leaking out of my rectum/vagina every few minutes and causing my butt/perineum/vaginal area to be on fire constantly no matter how many sitz baths i would take. This surgery has been a blessing. But I’m really struggling with the shock of this all. I didn’t know I was going to need the ileostomy until maybe 16 hours before I woke up with one. I have not been able to change my bag at all. I’m beyond lucky and thankful that my husband is able to do it for me. Being so far away from Mayo’s has been scary. I don’t have much medical support around me that understands stomas. I had a nurse for a couple days, but she didn’t really know anything, just read the pamphlet on how to change the bag and then did it. But my husband has since taken over.

Is this denial that I’m experiencing? Is this something that is “normal”? I can’t look at my stoma without almost throwing up or just breaking down….. 

Bill

Hello PeaceLoveFly.
First of all, welcome to this site where many have found the support they need, when they have needed it.
I am sorry the you have had such a torrid experience during the birth of your child. It's a traumatic enough experience without all the extras you have been through. 
When you say that you are struggling with the mental side of having a stoma and then ask the question 'is this normal? The simple answer must be a big 'YES!'
However, the general consensus seems to be that those who were not expecting to get a stoma tend to have more problems with the 'shock' than those who were well prepared and probably elected to have one. The latter group probably had a lot of time to adjust prior to their surgery, whereas those who did not have the pre-preparation have the added disadvantage of coping with the 'shock' and the surgery after the event. 
The 'mental' side of these things has very similar symptoms to those of Post Traumatic Stress, which many medics are very familiar with nowadays (after so many needless wars).
From what you say, the sight of your stoma maybe creating a form of 'flashback', to make you relive the original trauma all over again, if only in your mind.
This too is 'normal' in these circumstances.
It might be worthwhile keeping a diary , or at least writing down your feelings so that you can reflect on the writing rather than the actual incident. 
In the early days of my stoma I got through the 'traumatic' stages by writing rhyme. This help me clarify my thoughts, but much more important than that, it helped me control and direct my 'emotions' into a more logical format. To give you some idea of how this works, I am still writing rhymes today, for much the same reasons.
Most of my past rhymes on the subject of stomas and related issues  have been posted on here over the years and these can be found in the 'collections' section at the head of the page.
However, It is always nice to be able to resurrect these early rhymes to show how I felt in those post operation days, weeks and months so I'll copy the very first one below.
There are few reasons to think that you cannot deal with this yourself with time and patience. However,  please don't let the 'trauma' aspect go on for too long before seeking professional help, as the sooner you get a grip of it the sooner it will become 'manageable'.
And, if you do decide to write your thoughts and feelings down, please share them with us, because there will be many other 'newbies' thinking similar things and asking similar questions.

Best wishes
Bill

FIRST OSTOMY.

I must admit I had a scare
the first time that I saw it there.
I can’t remember what I said
about this thing so crimson red.

Some thoughts were flashing through my mind
about how fate had been unkind.
Most of all I thought “Why me!”
that had to have this ostomy.

What in the world had I done wrong
that to this thing, I’d now belong?
This thing that stuck out from my tum
replacing my malfunctioning bum. 

Right now I only speak for me
when talking of my ostomy.
They told me I would benefit
but I began to doubt that bit.

To tell the truth, I won’t pretend
I thought that this would be the end.
I thought the active life I’d led
was now gone, forever dead.

There was no way that I could swim
with what looked like an extra limb.
There’s nothing anyone could say
to keep these type of thoughts at bay.

The negatives exaggerated
as my mood degenerated.
It seemed that I had lost control
of my body and my soul.

But now I’ve had this ‘thing’ a while
I can look back and I can smile.
For now I’m doing so much more
and I’m  more active than before.

                                    B. Withers  2012

 

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warrior

It would appear that you are the princess warrior !!  and you are right- I don't think anybody on this website has ever been through what you have been through but I'll tell you this...

there might be somebody out there now who's just been sitting on the sidelines waiting for somebody like you to open the door for them ...thank you for that!!😇

so I would suggest you  sit tight ...be patient ... you're very young so you're going to recover rather quickly than some of us  old farts ..

I think that  you are in a good place now with us here... plus you have a very supportive husband and you may find that being very rare in some cases the husband ends up leaving .. it's really a sad aspect of having a bag attached to your body like that..  but I think you're going to be okay... I think you're one of the lucky ones... I'm thinking you need to keep your chin up and obviously you're a fighter, a Survivor, and I'm wishing you the best ...Just stay with us. Ask.  question.

yeah its normal hon..what yur feeling. it will pass. give it time.

just sit tight and people will be chiming in and that you can take to the bank.😊

( and as I write this and edit it I see Bill has beat me to the reply. so " what Bill said" too)

Riva

Welcome .  You have come to the right place . Education is key on this new journey of yours.   I suggest you check out UOAA, United Ostomy Association of America. It’s our National organization.  Also , Ostomy101.com .  You will learn about foods, blockages, skin care, clothing , Ostomy products, travel, activities , and a whole host of other tricks of the trade.   You might also want to check out a local support group near you .  Just remember you are not alone on this new journey of yours. Wearing a pouch does not and will not define whom you are.  There are solutions. We’re here for you . Best of luck.

Axl

Hello PLF

Wow you have had a very tough time there. A lot of us have had very dark moments with our own experiences and many have had to do it alone. I can recall moments when I had briefly considered not continuing but it didn't last long, we all have places to go and adventures to be had and people who need us. The emotional component of this can be very overwhelming but time does change things. You will learn tips for changing your appliance and honestly the day will come when you mostly forget it's there. I remember getting considerable comfort from this site knowing there were others just like me. Before long you may even find yourself offering advice to newcomers. You are brand new to your new circumstance, just let yourself evolve don't fight it, you can do it, you will see.

Take care

Axl

 
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Jayne

Welcome to the site Peace Love Fly.

 

You have come to the right place.

Our heart felt Best Thoughts are with you.

 

Each of us has a different Journey - even those with a similar medical history.

 

No other person can parrallel Your Own Journey.

You have begun to help your own acceptance of what has happened by sharing.

 

Be kind to yourself and know that time WILL help!

 

Gradually, ever so subtly, our emotions begin to adjust.

 

You are already expressing such gratitude for your Son and your Husband.

 

Believe in Yourself, Try to be grateful for Your Family and Friends

and KNOW YOU ARE NOT ALONE.

 

ON a personal note, I am beginning to learn - at such a longtime into my own Journey,

what is the true worth of being able to share with others - others who have actually "been there"

By reading of experience, that I can relate to in a very particular sense of recognition;

 

Asking questions - One continues to learn everyday.

 

Interacting with those Souls who have true empathy because they too have been in a similar emotional place,

and have dealt with the physical, personal stuff, on a daily basis.

 

ALthough I am a biologically aged person - my own Psyche remains at '30-Something' - for I will NEVER GIVE UP.

 

You have a whole life of opportunity and love ahead of you ....

which, I feel sure you will gorw into and fully realise many opportunities in the future -

A FUTURE which BEGINS TODAY!

 

It is OK to feel as You - for now.

 

BUt, in the wise woords of Bill, in due course, there is NO stigma in having professional help if you find your transistion remains a difficult one over time.

Few - if any have been through your own particularly tramatic experience.

 

 

As a personal 'take-away' Some of us have the kind of character, who like me have a 'stiff upper lip' and have spent far too long in life believing that they cope by keeping all the hurt at Soul level - shut within the body [and the mind]: Sometimes, professional theraputic help may be very valuable in aiding the 'release' of that which we trap inside.

AND some folk, when they do finally have professional help to release these feelings which are held at a very deep level - wish they had done so earlier.

 

 

Give yourself time - for the early stages of adjustment and 'ALLOW' yourself to actually make the time that is needed.

 

I CAN empathise very specifically with you in terms of my own acceptance of my stoma.

We do learn to be grateful - but there is a relationship than needs to be built with our stoma before it becomes an accepted part of us.

Please know that you are not alone in this aspect - IT takes a very personal - totally unique transition before we become at peace with ourselves.

 

I send a virtual hug across the pond.

Feel free to communicate through the forum - AND KEEP TALKING - do not withdraw - YOU ARE NOT ALONE!

 

 

 

Best Wishes

Jayne.

 

 

 

Justbreathe

My heart goes out to you, you have been through so much.  You have almost described my introduction to my ileostomy.  It was like a death sentence to me and I too could not even look at it.  My husband was there to take over for me in my mental absence in those first few weeks.  Thank goodness you have come to this site - I swear it saved my sanity and well as helping me to find my way back to life as I knew it which included humor and a positive attitude.  Welcome to the site - remember as a newbie reading daily posts which are enlightening there is a wealth of information in older posts you may want to refer to them as well.  Best wishes to you on your journey.  jb

ron in mich

Hi PLF welcome to the site fellow Michigander and how bout them Lions, like others said what you are feeling is normal, there are stages we go through after serious surgery and to have a new baby on top of it is a lot to process there are stages of anger, why me, that a person goes through and you dont have to feel bad about it, as others said ask questions someone on here might be able to answer them, and as a suggestion eat small meals of foods you like and try to get some walking in outdoors if possible in the middle of our winter, we got another 8-10 of snow last nite so we here in the U. P. have got close to 4ft. since last friday.  good luck  

Audrey Warren

Somewhere your doctors screwed up big time . I see you live in Mich; I live in a suburb of Detroit and I  know Mich has some excellent hospitals/doctors. Henry Ford is excellent, albeit there are  a few bad docs there. 
Please seek legal advice about negligence

and incompetence. If cost prohibitive I wouldn't pursue it. It would only create more stress.
And more importantly, try and find a therapist who specializes in PTSD.

Good luck and don't give up.

Jayne
Reply to Audrey Warren

Hello again, Peace Love Fly.

 

I endorse the general comment as regards Legal Advice. 

Please Note I have no personal knowledge of any US specific hospitals/clinics/ specialist  staff within them;

ALso I must make it clear that I have NO professional medical or legal knowledge and my thoughts should not be relied upon in the place of your seeking recognised proper Legal Advice and MEdical Advice AND if any doubt exists seek a Second Oppinion / Professional View/s regarding both

 

Personally,  I may be inclined to take specialist legal advice - ideally before the theraputic route - so there is no compromise in your legal  redress or shortfalls of funding for any necessary treatment.

As regards legal redress, in most countries there is a time frame as to Legal Limitation - ie one may need to register - through a lawyer - your concern before your legal right is lost after a certain time frame elapses from the event: I am not aufait with US law.

As regards to thereputic treatment I am led to understand that there are various conditions that are related to PTSD or indeed CPTSD - not all symptoms / elements need be experienced - It is important for a patient to receive the correct root diagnosis with specific focus on the features that are symptomatic - BUT Even more importantly, it IS crutial, apparently, to work with an experienced professional therapist who has a track record and appropriate qualifications to ensure treatment is effective

[A lot of time and money can be spent ineffectually when incorrectly diagnosed or the right help is not found - Therapy works when the patient and the therapest have a relationship which works - there needs to be mutual respect, correctly placed trust and understanding - This is a personal chemistry!]. 

 

All things to think about - but not to be intospect about either!

Stay Positive and Outward looking.

 

Try to ENJOY  the day - concentrate on that which you DO LIKE - outside from yourself ....

and don't be bashful to treat yourself with some nice little surprises - all the little GOOD things add up!.

 

Best wishes

Jayne

 

PS

PLEASE NOTE THAT I AM NEITHER A MEDICAL OR LEGAL PROFESSIONAL AND AS SUCH THERE IS NO ADVICE AS SUCH IN WHAT I CONTRIBUTE - BUT please consider these points so that you are able to seek professional advice and medical opinion which is appropriate for your specific circumstances.

The negligence element of your medical care should be addressed ie logged and defined - even if you do not pursue an involved legal Case - BECAUSE there may be consequential isues arising many years later - and this is important to understand - so as not to negate any future INsurance for subsequent care you may need - It is good to be informed and take a professional Opinion to safeguard your future medical time line.

None of these things are said to over burden you at this difficult time - but are said as a kindly note of information so that you your Family have reference to enable informed decisions in due course.

 

tnmontan9721

What is normal?  I too questioned this.  My surgery was last August and to this day I cry every night.  Fortunately like you my husband does it all.  empties bag, replaces wafer and cleans skin and then adds new bag.  I don't know what I would do without him.  Hang in there!

Justbreathe
Reply to tnmontan9721

I would think normal is a bit different for everyone.  For me it was when I actually started to feel healthy again which took a while.  Also my acceptance of the fact that the little alien on my belly did in fact have some benefits.  Again, this did not happen for a while.  At first I had a male nurse come to our home every 5 days to change my appliance- that was very unpleasant for many reasons and my husband would stand close by to watch and learn and we both thought the fella did not have much training.  We basically told our insurance company we no longer needed him.  My husband took over for a short time and then I began to think I can do this myself and did.  Early on, when showering I would wrap my belly appliance and all in Saran Wrap or Stretch and Seal because I was unaware I could get it wet.   So much for all of that b.s. when I joined this web-site and learned you can shower totally naked which was the first stepping stone toward normal for me !!!  Many more stepping stones followed with the knowledge shared on MAO along with the realization that there are so very many more folks with unimaginable and traumatic injuries and illnesses than what I had experienced and they survived their journey and shared with those of us who are here to seek information and advice and above all….understanding.  Normal for me is getting back to good health and no pain…. I have very nearly achieved that except I still have my stoma …which at one time was supposed to be reversed - that never happened by my choice -  since my health has returned and I have no pain, I have opted out of the reversal.  Time is truly a healer and hopefully in time you will learn to accept your stoma - you may want to try to attend to it yourself which helped me from my initial repulsion.  Doing that for myself definitely toughened me up and I was able to start to head toward normal.  jb

Jayne
Reply to Justbreathe

Just Breath,

So well written and expressed from a perspective of being 'WITHIN the Journey'  - the approach to the stepping stones of gentle transition - Thank you,  for expressing the true worth of 'one step at a time'.

Absolutely. 

The actual stepping stones of realisation ..... progressing towards 'normal'

 

I feel this helps us to 'engage' with the tentive DOing .... which slowly brings us into BEing  once aginn "back within" Ourselves.

 

JB, you are able to share the 'gentleness' of confidence.

 

Blessings

 

Best Wishes to All

 

Jayne

 

 

Jayne
Reply to tnmontan9721

"Allow" yourself time tnmontan.

IN your gratitude to your Husband, gently feel first, in helping him, and by degrees, the feeling will evolve ....

HUgs to Both You and Your Husband

 

Best Wishes to All

 

Jayne

Bill
Reply to Jayne

Hello jayne. 

Thank you for this post as it has provided me with the concept of 'doing' for my next rhyme.
Best wishes

Bill

Justbreathe
Reply to Jayne

Aww Jayne, thanks for the kind words. Much appreciated! hugs to you, jb

louathome2011
Reply to Bill

Your poem was very amusing and echoed how I felt after my emergency surgery and consequent colostomy bag following a perforation and peritonitis, after being a fit 68 year old and 11 months on although I have had no pain following this and have felt well, I feel more traumatised and anxious than I did when I was in survival mode. I am much more active now but have not returned to my normal weight and look underweight. It is not good for anyones mental health to see a piece of your intestine and a large scar, even though it may have been life saving. Having never had a major op there were a lot of first experiences to get through. I am  on my own and need to keep busy to keep morbid thoughts in the background. 

Bill
Reply to louathome2011

I am so glad that you enjoyed the rhyme.
If your experiences run true to form, it won't be long before you adjust and take it all in your stride.
Best wishes

Bill

freedancer

I am so sorry tat you have gone through such difficulties.  I pretty much know how you have been feeling.  My ex-husband tried to kill me by poisoning my supper. I thought it tasted funny but he said that the meat was "a bit aged" and not to worry. Thirty minutes after eating, I was screaming in pain as my lower bowel was dying. I begged him to take me to the hospital but he did not take me until 1am. Then, after taking me there, he left me, went home, shut off all the phones and went to bed. It wasn't until I was in the ICU that he found out I did not die. I was in ICU for three days and then on the surgery ward for another 10 days.  Along with this, I had broken the base bone of my left foot and was unable to put any weight on it for 90 days. This happened in Utah when I went to George E. Wallen VA Hospital to have a throat surgery checked that I had done on the 7th of June 2017. I had gone there 1 day prior to the appointment because the civilian surgeon only came to the hospital once a month.  The night before the appointment I fell over a bad spot on the sidewalk that had caved in. I ended up being admitted to the VA hospital where I had surgery to put a screw into my foot to pull the break together. My spouse was furious because he had to drive from Montana to Utah to bring me home due to all the durable equipment they gave me. We got home on the 1st of July 2017 and on the 12th of July 2017 I almost died during the first emergency surgery.  7 months later I landed in the hospital again and almost died again after the first ileostomy strictured and failed. I had suffered with severe cramps and barely any output for 7 months. On the 12 of February 2017 I was rushed into surgery again as all of my remaining small intestines were so full they were ready to burst. Unfortunately,  they never ran toxology for poison the first time so my ex spouse got away with everything. I refused to eat anything that he made me ever again.  I had a fantastic Ostomy nurse who taught me how to change my bag and do the skin care. If you had an Ostomy nurse in the hospital, you should touch base with them. They will teach you what to do and you won't be afraid to change it yourself.  I am so sorry you had such a terrible birthing experience.  It should have been a beautiful experience for you.  I hope you will poor out your heart on this site because there are so many people here that have been through this and other surgeries and they can help you.  I change my own skin barrier and bag. One thing that really helped me was to get a mirror that you can look at while you change.  It helped me to see the site and I could make sure I had the placement correct.  I hope you will feel better soon and gain good confidence. Feel free to ask me anything and I will help you.

 

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