Your First Time

Who wants to share about the first time you saw your stoma post-surgery? 😉

The good, the bad, the real...

And the ugly 🤮

JB, I thought about going the full Clint Eastwood route... but then I just went with real. 😉

I thought I was going to have a hole on my side, not my red guts sticking out. It hurt like heck, looked yucky, and the smell was crazy bad. Thank goodness for M9!

Remember sitting in a chair the day after surgery with a clear bag on, seeing a stoma that looked like some kind of monster. I hated the sight of it, thinking, "Oh my God, I've done the wrong thing," as I'd had the choice of having a J-pouch. Then I gave myself a kick and said, "I've got to get used to it," and kept looking at the stoma. After a while, it got easier. I think it helped a lot having an MRSA wound infection; that was my biggest problem. I hated seeing my wound open more than the stoma.

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Lol…okay then, the real…ugly. I guess I will never get over owning this thing. I know so many are grateful, and I totally understand that, as I have 3 close family members with IBS and have often thought they would benefit so much from an ostomy. Many times, I would be with one of them shopping, and I would hear - "I gotta go" and saw that "deer in the headlights" look on their face. However, I was so fortunate to have never experienced any urgency or pain such as that in my entire life. After sporting an ostomy for the last 3 years, I often think - if only they knew how much easier an ostomy would have been for them if they were able to find the best surgeon in the land and the least amount of surgery required. Given a choice, I would have picked an ostomy for sure. Today, I am thankful a large non-malignant cyst was removed, which caused the removal of a damaged right ovary and my appendix, both of which I didn't need anyway. I guess my bottom line here is - for those who love their ostomies, bless your appreciative hearts, and I do totally understand your feelings - for those of us who don't - well, we must try to learn to live peacefully with them. jb

I didn't see my stoma until almost three months after my surgery. I spent those three months mostly on opiates, and bag empties and changes were done by my nurses. I have vision issues that affect my ability to see anything at the bottom of my vision range. It wasn't until I asked a nurse to let me take a picture of my stoma that I saw it. I had a brief flash of a traumatic episode from my past and did not want to look again. I deleted the photo. By the time I was able to lift myself to where I could see the stoma, that had passed and was replaced by a sense of wonder at how we can still live when we are inside out. :-)

Daniel

I suffered from IBS for six years, and November 8 was my two-year anniversary with Stella.
I still have IBS but not the bloating and need to be near a WC. My surgery was elective, and I wish I had done it years earlier. I never had pain but was often very uncomfortable. The quality of my life is much improved. I'm tempted to call her Rosie but like Stella. She could be Stella Rose😅

As far as my first reaction to seeing my stoma, I had looked at pictures online before the surgery. I thought it was "interesting."

Thanks for sharing - it sounds like this was a good decision for you. Actually, this is the very reason I have (so far) opted out of a reversal. I would much rather deal with my ileostomy (Seymour and his sidekick) than take a chance on perhaps having diarrhea, constipation, trapped gas, and bloating for the remainder of my life. After much research, medical delays, and what I feel were “signs,” in addition to my daughter saying, “If there comes a time when someone will need to attend to you, I for one would rather clean up your belly than your butt.” However, the sidekick is waiting and wondering what the heck, “Do I have to hang around in this god-awful bag with absolutely nothing to do but smell poop!” Such is an ostomate's life... jb

After surgery, it was covered by the bag. I could only imagine what was in there.

Eventually, a stoma nurse visited and removed the bag and wafer. And there, standing prominently, was my little red beast. It was love at first sight.

Okay... no... I was somewhat grossed out. I told the nurse, "Good thing I'm already lying in a hospital bed." It was very weird seeing something that's normally inside your body now sticking out. The first time it let loose with a gas blast, I was like: Whoa...Whoa, WHOA! I yelled at my wife, "Get the nurse!" Everyone had a good laugh... except me.

As a retired public health nurse, I have taught many stoma owners. A totally different story this side of "the bag." I looked at the very swollen red protrusion and decided to face this journey with determination. Several days later, after placing my first ostomy supply order, I cried. It is overwhelming but slowly becoming a new part of my clean routine.

Hi IanEmily,

It gets better. I'm one year post-op and am really used to the stoma. At first, I was scared trying to clean it, replace the wafer, change bags. I hardly ate anything... worried about blockage or diarrhea.

You'll get used to it too.

Take care

For the first few weeks in the hospital, I looked away every time the bag was changed - I didn't want to accept my new reality, and I cried a lot. The aides would empty it because I was feeling too sick, drugged up, and emotionally overwhelmed to learn how to take care of it. The wound nurse would take pictures each time, and I would catch a glimpse of it on the computer screen - yikes.

I finally got a good in-depth look at my stoma about 2 weeks into my hospital stay when the wound nurse had to tend to a huge blister under it from the wafer leaking. I asked that they not give me my pain meds until afterward, so I could actually retain some knowledge about caring for it.

It was a real eye-opener. My daughter was with me and she gagged from the smell, and I laughed for the first time in a long time. I know it was mean to laugh at her, but her face was priceless. Then she laughed, and the wound nurse stifled a laugh. That's when I knew it would all be okay someday, because I could still laugh and laughing is one thing I love to do and it made me feel a little like 'me' again.

Now BumTum and I are friends (that's his name), and I'm grateful that my life could be saved this way. I am somewhat fascinated watching him too - it's so surreal. It was hard to learn how to do the appliance changes - I remember feeling this same way a few years back when I had to start giving my cat diabetes shots. I cried the first time because my hands were shaking and I thought, "I can't do these shots!" But I had to, so I did - became very good at it actually. Same thing with this...I had to learn how to take care of my stoma, as hard as it was - and I did.

Let's just say I nearly called my stoma bag after Baga Chipz on UK Drag Race thanks to the similarity to their well-filled lips.

Alone and on one's own - actually may not be a 'bad' experience

Provided one can finally "process" one's feelings!

Yes, a first, in fact a double, if not triple first for me, that I am only beginning to understand, how helpful the sharing of it may be

And so, it's taken me a while before expressing here something, that I know will help me, if I do share it!

And I share it without prejudice and as a genuine well-wish for all who find themselves "alone"   

My first time of viewing my "stoma" that was factored for me to continue the management of my existing ileostomy, following the explant scalping out from my bowel and abdomen, of my TIES device, was a sight that engendered a feeling within me that I had never experienced before! 

And I say that, as I was, at the time of my explant in Sep 2019, a sixty-five-year-old 'young' ostomist who had learned to live and manage her former stoma from the age of 25 years when she first had her ileostomy ...... So perhaps it can be appreciated I was not a 'newbie' - with little experience, viewing what I was "left with". I was an experienced patient of 40 odd years living with a stoma and all that entails.

In fact, following the decline of my abdominal tissue whilst hosting TIES and many deep channels expelling infected material followed by clear fluid and then infected material and then clear fluid ..... a cyclic ongoing expelling process ...... I knew, before the final explantation - the excision of the device, that I was faced with no alternative but to have the surgeon who had implanted the device, schedule me for its explantation - with both he and his patient not knowing how that was to be done and what I would be left with! There was little 'stable' abdominal flesh to sew to!

When I first sighted the "stoma" that had been left on my abdomen, I was horrified - and was very grateful that the specialist nurse for the TIES trial team was there with me, on the ward, by my bedside, when I first peeked - as the bag that was with it had leaked and I needed to attend to my new circumstance of no longer retaining the TIES device. And, I needed to keep it super clean - so elected to dress the area within as clean an environment as possible - using 'sterile' facilities at my bed.

This was my new future!

Apprehension was balanced with an open mind, and I had already convinced myself that whatever I now had was what I now have!

So yes, first sight by me ......

I saw, we witnessed, for the first time, a very black heavily encrusted and stitched stoma pointing down with no spout and signs all around the stoma area where the draining points of my abdomen had been, were now, partially, closed to allow for continual drainage and there I was! 

Not only that but also this new post-surgical scene brought home to me with its own second midline incision ..... the big horizontal scar from the old original stoma site prior to TIES, for as well as a vertical midline scar there had been no 'neat cat's bottom closure' on the other side of my abdomen - so I was by then feeling pretty well cut up and held together in a manner that I had difficulty in accepting.  

But I held this all inside and put a brave 'professional' patient face - hiding what I felt inside!

Totally stunned - and totally numb.

I then, as is my character, adopted a stiff upper lip and went through the gentle motions - with as much 'controlled presence' that I could muster, of cleaning me down and drying what I could and placing another collecting appliance to protect that which now was on my abdomen - I had a very red, excruciatingly sensitive, abdomen, and was in what I could best describe as "a transitionary state".

I and my specialist nurse took a photo on her phone - that day 24 hours or so following surgery - and sent it to my email and also to the trial record.

I sent it on to the sponsor CEO so he could see what I personally saw the very first time I viewed - emailed as the camera saw it - as I saw it - that which I was left with following the explantation.

When I went to repeat the change on Friday late afternoon - some 48+ hours following surgery, I was concerned as I was in no fit to go home and did not feel safe to do so!

Despite having been presented with my discharge notes!  ....

So, in the circumstances, that afternoon/early Friday evening, as my main surgeon was on call - and although I had been told I could go home the same Friday night I rang my main surgeon's personal mobile to express my concerns as he was away from the hospital but on call given that it was a Friday night [start of a weekend, only a general doctor was available to come and view me live. -

When I went to repeat the exercise of changing the bag - 48 hours following the explantation surgery ...... I was showing signs of continued infection, was still very unstable physically within the abdominal area, and viewing my discharge notes in disbelief:

The patient discharge notes categorically stated: "No further treatment required"

So that was my first - and my 'second' first view of my unstable situation!

A viewing of a flat stoma to manage the ileostomy that I had been managing - well with a spouted stoma discharging into my collecting bags - for forty years!

And now being discharged without any follow-up care in place!

That experience has remained with me - and try as might I seem not to be able to totally dismiss it from my psyche!

Over an extended period of time I battled to be heard .....

I restlessly traveled - driving myself from the Welsh Hills where I have been looked after, alone, during COVID, padded up - because a taxi was not an option - then - and I attended NHS appointments to see clinicians in an attempt to access the treatment and professional care that I needed.

In fact a somewhat surreal experience during lockdown having London Westminster Bridge to myself with only cyclists out for a delivery journey. London was relatively empty - none of the usual highly trafficked busy central streets filled with slow grid-locked metropolitan life!

And so I continued to self-manage and pursue professional dermatological expertise following a lengthy process to view the histology both from the explanted material and that which was later taken from the recovering stomal area.

I would also like to express, right here, that as an individual I have never ever viewed myself in any way as a 'victim' of circumstance - but rather, have always striven to maintain a stiff upper lip, holding my own self-respect high and not whining!

This "first" experience after explant remains with me - although I am grateful to say that after many months of careful management - with little help from outside my home, - I did finally, access, with the help of my lawyer, proper reparative surgery - and I now have a spouted textbook stoma - but unfortunately am still in need of further surgery to manage bowel which has become trapped near the stoma itself, and I have pain upon every time I eat once the bowel is moving.

+ + + + + + +

There was another first for me that preceded my explant surgery and my odd discharge from hospital .......

That was, in fact, a very lonely and almost intolerable experience the night before my scheduled explantation.

I have written, elsewhere on this site, of the lone experience I had when cleaning down the TIES device, for the last time, alone on the ward at night knowing that the following day it would be removed from my body and then go on an air flight to Sweden for examination, and the histology from which, would become part of the data set of the research and development of the TIES device.

I did somehow find the 'lone' courage ........ and after cleaning down for the last time, I managed to pad myself up with a collecting facility which was to remain in place until my surgeon came to see me on the morning of explant, explaining to me in all honesty that he did not know what he was going to be able to achieve until within theatre live on the operating table.

Apart from expressions of bravery and a sit down by my side, and for the first time, a little sideways eye contact, I managed - I hope - to 'enable' the surgeon to conduct a short patient visit prior to his scrub-up and gowning-up for the final implant of the TIES device that year - which was scheduled in theatre immediately prior to the explantation of my own device.

But I have finally come to realize that also there can be great release - and at times, we do not understand how this plays out - only that we are grateful to have lived through such a release!

The run-up to explant:

I have written elsewhere, that somehow, one finds the spirit within to hold oneself together and carry one's challenge ..... for in the circumstances, I went to the night staff nurse in charge - explained that I had a full measure of my situation, and that I wished to leave the ward, and walk within the hospital to the main atrium area where there was a grand piano. Fortunately, bless her, she did have a total understanding of my request - and knew, that I needed this 'release' there and then, and she also knew that I would re-present on the ward, once I had found the means of 'discharging' my utter 'everything in abeyance" tension that I was holding inside of me.

She acknowledged my need - expressed her empathy, and I left the ward - with a map of the hospital corridors 'scribbled down' within my head for I knew I did not need to access the outside environment in order to find the piano!

I walked, and walked - for what seemed like 'miles' .... in actually a few corridors, the sort of journey a porter may take one upon in a wheelchair when taking the patient to another part of the hospital ...... And I found myself viewing an art exhibition, which had recently been hung in the central atrium of the main area of the hospital.

After a while of viewing the exhibition, just walking, and 'looking' in a somewhat detached state of mind, I wandered over to the piano.

Sat down at the stool, and gently lifted the lid from the keyboard.

I sat quite quietly.

For what seemed a long time.

And gently my arms became expansive and I began to play - like I had done so many years before in my childhood and when my mother had been alive ..........there was always classical music in the house in those days. My mother played the piano. I simply adored her playing. 

But after she died when I was 25 I had ceased to play - I did not have a piano within my married home   ........

I do not read music. But I used to play by ear. And on this particular night ..... I found myself, curiously, 'cared for' - 'protected' and 'belonging to my experience'.

I played. And I played.

Or rather something - 'caring for me within me' - played  .....

A number of night staff apparently had gathered ..... I only subsequently became aware of what had happened, later on the Sunday five days later, when I finally left the hospital.

Just before entering the front passenger seat of my car, a patient - whom I had seen walking the hospital - on numerous occasions before,

• He came up to my partner, and asked him for change - which he duly found within his trouser pocket and gave to the patient.
• The patient, then turned to me and said "Thank you for playing for everybody"
• I had no idea what he was speaking about - until he explained ....
• That patient had a septic limb that he was dragging about and he used to walk - and smoke - as he 'needed' to be outside.
• I was silent and very humbled - so very grateful that in that split second I was able to share in a manner so unexpected.
• I hope he went on to get better!

• And further, I will share something else as well:
• I have reason to be grateful to a particular member of the team who led the sponsor company management - for he was able to support me in a manner that was very special indeed. My gratitude and professional respect remains for this individual - irrespective of my general experience of the TIES trial.

And, for the first time, I don't mind admitting, that I feel awkward in sharing this - but know that it is part of my journey to share this narrative!

We all - every one of us - have our own firsts - and our own "stuff" that we are able / are not yet able to share!

In gratitude.

Thank you.

What's M9?

It was a temporary stoma back then, and what I recall was seeing that rod sticking out of it. I was so doped up from all the painkillers that it did not faze me.

The first time I saw my stoma was in the hospital the day after surgery. I honestly thought it was a synthetic tube to which I would attach the bag and whatnot. I was in a haze of drugs and accepted it. Seemed ok.

About 4 days later, when I met the stoma nurse and she changed the bag for me, I saw it as a bloated, fleshy rose sticking out of my gut. When she told me it was my intestine, I was shocked. I had visions of having someone grab and pull it out when I would close my eyes and nightmares each night.

Until my reversal, I never did shake the dreams and had a very hard time dealing with it. I thought I was stronger than that but only later began to understand real strength.

My first time... it was crazy. Came out of surgery with my stomach open except for a few staples and a red nose on my side. They said half of my large intestines was removed, so I needed it. I had to go back into surgery the next day. They said it was going to be removed or stay, but then they stitched me up and gave me a bag. I didn't want to touch it because I thought it would hurt. But after the nurse showed me, I got the hang of it. It's okay having my stoma because before, when I pooped, I usually got in the shower to make sure I was clean because I couldn't reach my butt area properly. But with my stoma, I can clean it and wash it well. The nurse in the hospital, when I go, tells me I do a good job with it because some of the patients' own are disgusting to look at. Just sometimes it gets smelly when I eat certain foods and it gases up a lot...

Any suggestions about that?