A little bit about my stoma journey

Maybe it's wise to grab a coffee and some popcorn first though... oh, and a comfy chair. :)

In 1987, due to bladder problems, I had an operation (Cystoplasty - whereby some bowel was salvaged to be implanted into my bladder, to help me hold more urine). Over the years, right up until 2006, all went brilliantly well with that operation, apart from some mucus problems that were caused due to the implanted bowel not knowing it didn't need to produce mucus anymore. I was given weekly treatments of Uro-Tainer to try and break down the mucus.

Numerous infections followed though over a couple of years and a concern for reflux happening to my remaining right kidney, due to the fact I had, years ago, lost my left kidney due to reflux from my left ureter.

Although several surgeries to re-implant the ureter again helped for a short time, the narrowing of the ureter occurred again and again. This caused my kidney to be diseased, hence the need for it to be removed.

In 2009, due to numerous infections, it was necessary for me to have the Urostomy.

The bladder is still inside, not used of course. A few problems eventually arose, bladder spasms, I have been given courses of botox, 24 injections, 20mls each, also Pregabalin due to nerve damage, which all help.

The unfortunate problem I had stemming from the Cystoplasty operation was severe pains in my bowel which eventually led to me needing surgery several times, (long story short), resulting in the Ileostomy 1989. It seems where the bowel was salvaged from it caused adhesions and many blockages. I had to have the Ileostomy.

I do get mucus build-up in the remaining stump, also very thirsty so much over the day. I was given the artificial saliva spray, that helped a fair bit, but that for some reason can't be got now for some reason, my doctor tried to get me other brands of that but no luck. I have been given Oralieve moisturising mouth gel, that helps.

How it all stands now is, due to a lot of operations since 1989 due to adhesions/blockages, and just to mention the latest bad times, over the last year I have been admitted another 3 times to the hospital for small bowel obstruction, horrendous in itself as for anyone sadly experiencing those.

Surgery is not as much now the first port of call, on admission as IV fluids, pain relief, along with a nasal gastric tube and some Gastrografin, which fortunately worked is given, but my word what an ordeal all in all to get through. Severe weight loss and weakness left me in a state at home for a couple of weeks in recovery from that.

The bowel surgeon spoke to me to say he will think what is for the best to do for the future. I will see him again this March. It was initially booked for this month, but due to recent doctors/consultants strikes it had been changed.

... 10th February.

When I joined I didn't realize it would be so costly to actually get to meet new friends. £38 a year, or £59 for all time is too much for me. I of course would gladly donate to this website, but no way can I pay that much.

Thank you to everyone who has left such kind messages to what I have posted. I wish everyone all the very best for their future health. x

Oh, Fairy, you certainly have been through it for such a long time. I hope your March appointment gives you some direction.🙏

Hello Fairy69.
Thank you so much for sharing your story (and what a story it is too!). I suspect that there is little any of us can do to help, other than wish you well for the future, which I obviously do.
Best wishes

Bill
 

Thank you eefyjig and Bill for what you have so kindly said. x

In a way, writing this down has helped as it is really the first time I got it all out, feeling amongst many who have surely walked the walk in their own way.

I know the surgeon at my bedside the last time I was admitted in December mentioned that due to the state of my insides and possibly risking more surgery, he talked about maybe having TPN (total parenteral nutrition), but that in itself is a big deal, I gather from reading a bit about it. So basically, he said he will have a good think and have a chat with another consultant, a friend of his, in readiness for my next appointment.

So I now await the appointment.

Fairy, you have really been tested by the fire, haven't you? I am so glad that you got your story out, and that you find comfort in sharing with us. Best wishes and prayers for your doctor visit and decisions to be made.

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Thanks for sharing your story. It does help to get it out and see it in print. I go back and read my story from time to time. It reminds me how far I've come.

I had TPN for a while. Had to take an antifungal medication with it. Didn't have any side effects. But I have read a lot about TPN and it can cause trouble.

Hang in there 😉

 My God, you have been through the wringer and back again.  No matter how much one might think they have had it bad, there is always someone else who has had it worse.  My four surgeries and at least a dozen hospitalization over a two year period seem trivial to what you have experienced and continue to go through.  I think we often realize we are made of stronger stuff than we thought.  I admire your courage and strength and amazing attitude.  Sharing it with others by writing it down is definitely therapeutic, and this is a place where you can be free and vulnerable, so take advantage of it!  I'll be sending all the positive vibes I can muster.

Terry

Hello Fairy,

I had my first bowel obstruction episode.  The pain is unbelievable.  After 4 days they did surgery.

I have never experienced this pain.

I pray your appointment brings u some good news🙏❤️

Thank you for your kindness and thoughts, Morning glory, Beachboy, TerryLT, and Cbanks. x

Yes, for sure, Morning glory, I have been tested by the fire. It's amazing what many have to go through; there's really no choice but to take it all the best we can.

It did for sure help getting it out on paper, just like speaking it out, which I have never been able to do before.

I wonder, Beachboy, why the need for the antifungal meds when you were on the TPN. Is that maybe usual for anyone on TPN? Yes, you're so right about seeing how far each has come when reading back or simply thinking back to such hard medical times.

I think I got squashed flat with the wringer I have been through, TerryLT. All I can hope is that something is done soon and then I'll be more able to move on again.

So right, Cbanks, about the pain with bowel obstructions; the pain is horrendous, and all that goes along with it. I so hope all has gone well for you since the surgery.

I feel your pain with the bowel obstructions.  I've had three, hospitalized with each, and they eventually cleared themselves without surgery, but pain like I've never experienced before.  I remember one occasion in the ER, waiting to be seen by the doctor, lying in a room that faced out into the open ER.  I was howling in pain and unable to control it.  Someone (a nurse? another patient?) came and closed the door of the room, I presume so that I didn't disturb the other patients waiting in the ER.  Talk about adding insult to injury!

Terry

That's awful what happened that day TerryLT, how alone you must have felt then, as if no one cared and you should be quiet. 

I totally agree about the extreme pain with blockages, I honestly didn't know where to put myself, it was horrendous. Even the pain relief didn't help for long enough, 2 1/2 hours tops, so I couldn't have any more for another 1 1/2 hours. 

Hi Fairy.

So sorry to hear your story. It has so many similarities to my own journey over the last 33 years. I totally get where you are now.

I live in Surrey, England. If you ever feel like talking or sharing, which I always think helps, as we are surrounded by people who do their best to understand, but it's not easy to burden your loved ones. We are not alone, even if it feels like that at times. Wishing you well.

Thank you so much laughalot, really appreciate what you have said. So sorry to hear what a journey you have had over those 33 years, so much of our lives taken up with illness, pain etc. Amazing really what we all land up going through, taking each step best we can through it all. x

I am not able to contact anyone via private message as I am not as yet a premium member.

Sounds like here, I went to the ER in terrible pain and a temp. The doctor told me to go home and take my pain drugs. I can't eat opiates.

I ended up being taken by ambulance back to KC with a bowel stump infection.