Considering j pouch surgery.

Thanks for the positive replies. It's a huge decision for me, which is all the more confusing, especially as I've longed for the day to get rid of this bag.

Before and after the creation of my Stoma, my diet appears to make little difference to my condition or stoma output. Yeah, I found out the hard way; peanuts can cause a constipation effect of the small intestine, otherwise, what I eat makes no difference.

Suppose, once all has settled after surgery, 6 visit to the toilet per day, which I guess is 6 times during a 24 hour period,  is not so bad if there's no urgency.

As my Stoma output is very thick and has been since its formation, I'm hoping such a consistency would help reduce toilet visits and assist with j pouch control.

My biggest worry and fear is the possibility of nerve damage and erectile dysfunction after surgery.

It doesn't help that my Consultant is full of praise for my Surgeon and paints a wonderful picture of life after surgery.

Yet my Surgeon paints a grim picture, highlighting the possible complications during and after surgery, with an emphasis on failure rates, visits to the toilet and the possibility of erectal dysfunction.

Also, says that as I'm tall, my intestine may not be long enough ?

Comparing my Surgeons empathy to that of Surgeons on US reality Tv shows, who constantly reassure patients of their surgical skills and explain how wonderful life will be after surgery;  I can't help but feel that my Surgeon is planting seeds of doubt, so I change my mind and I don't go ahead with the J pouch.

What I'll do, is attempt to contact Mr Heald at Basingstoke, that's if he's still around and if so, I'll compare his approach to  J pouch surgery with that of my Surgeon.

UCWarrior, I'm the same height as yourself.

I'm in the UK and should I go ahead with J pouch surgery, it'll be carried out by the National Health Service, at no cost to myself, so I don't believe I have the option to speak to or choose an alternative Surgeon.

My UC Consultant sends me to a Surgeon of his choice.

In the UK, I dont believe Surgeons' who excel in a particular procedure have their names banded around like it appear so in the US.

As I've been given a UK Surgeons name by another forum member, I will attempt to make contact but in all honesty, I believe it's unlikely I will received a reply.

I didn't realise I was posting in a female area, I thought I was posting in a general discussion area.

As for choosing to have my operation laparoscopically; on the NHS, I don't believe I  have such a choice, once I'm on the operating table, I get what I'm given.

After my ileostomy op, I was somewhat disappointed to read on web forums, especially experiences of ostomates in the US, that a laparoscopic or a Caesarian type procedure is normally performed, yet I have a huge scar.

It appears in the UK, especially with the surgeon I've had experience of; have the attitude of " I'm saving your life, who cares what you look like afterwards, you're still alive aren't you ? "

Yes, my Surgeon has stated if the J pouch does fail I can revert to a ileostomy, but he also expresses the difficulties and complication I will face in such circumstances, which still doesn't sound very promising.

I'm aware that all surgery has an elements of risk.

In the US, based on what I read online, it appears that from the onset, J pouch surgery is a Surgeons goal, I guess due to the patients ongoing cost of colostomy bags etc when a Stoma is formed.

In the UK, it appears a Surgeons goal is to create a Stoma first and only perform J pouch surgery if a patient insists.

If, like myself and insistent; paint a bleak picture of the procedure, possible complication and life with a j pouch, in the hope that a patient changes their mind.

Scott;

I totally agree, the functional and cosmetic differences between an appliance and a J-pouch are the very same reasons as to why I'm considering J pouch surgery; cosmetics and body image especially.

My comment was in reference as to what I've read on various web forums, as it appears in the U.S, once its been decided the Colon must be removed, the objective of the surgeon and consultant, is to eventually create a J pouch at the earliest opportunity.

Which from a surgeons point of view, is probably due to the on going cost (to the patient) of colostomy bags, especially in countries that don't offer free health care.

After all, that was one of the reason why J pouch surgery was pioneered, especially in the U.S.

In the Uk, I believe a NHS Surgeons philosophy is somewhat different; such as, remove the colon, create a Stoma, "my work is done."

Once a Uk patient has recovered with a Stoma, after 3/4 weeks the patient is discharged from hospital and refered back to their Doctor or Consultant, with a hospital follow up appointment 6 months later.

From my own experience, any mention of Stoma reversal is fobbed off with one reason or another, such as, time to heal, time to adjust etc.

It appears a UK patient, like myself has to pursue their desire to have a reversal, explaining their feelings as to why they would prefer life without the use of a colostomy bag.

Thanks for your support Holly, very good of you.
Im please you're doing well.

Although, another example of US medical philosophy, only 9 weeks with an ostomy before reversal ?

Although the creation of my ileostomy was technically an emergency, I was assured of a reversal prior to the operation.

However, before the diagnosis of Crohns, I've had to constantly ask for the reversal.
It's only due to my insistence that I've finally been diagnosed with indeterminate UC.

Until my recent diagnosis; I'd as good as accepted the ostomy was for life, it's only since the break up with a long term girlfriend did the reversal become a desire.

However, regardless of US medical proceedure compared to the British National Health Service is irrelevant, it was just an observation, a surgical philosophy which I believe should be adopted by the NHS.

Hey plankrun

My Surgeon states the same figures as your surgeon, although the 20% failure rate is due to the diagnosis of Indeterminate UC, therefore, if  my condition was a definitive diagnosis, a 10% failure rate is stated.

Regardless of the type of UC, I've been told there is a 10% risk of erectile dysfunction post op, which is most concerning.

These percentages, I guess are either based on the success rate of J pouch surgery at a specific hospital or on the J pouch surgery performed within the UK or maybe the world at large ?

I've also been told to expect an average of 6 bowel movements per day, could be more !

My rectal stump has remained since the creation of my stoma and due to the possibility of post op erectile dysfunction, my Surgeon and Consultant have stated there's no urgency to remove it.

While a rectal stumped remains, there is an increase risk of developing rectal cancer, although due to the location of the stump and the Colon has been removed, I've been told such a diagnosis is not has serious as it would be to someone who is fit and well with no issue of IBD; less risk of spreading apparently, however being diagnosed with Cancer is serious.

Therefore, my Consultant ensures I have a sigmoidoscopy every few years.  

I'm also medication free, other than folic Acid and Imodium, I take nothing to control my illness, therefore, I'm kind of cured.

However, I do suffer from Proctitis, which causes no issues and I only became aware of it due to the results of a sigmoidoscopy.

I'm prescribed Mesalazine Suppositories, so when I notice blood from the back passage for more than a couple of days, I use the
Suppositories for 5/7 days.

In regard to percentages, the figures quoted are what been stated by my Specialist Colorectal Nurse, my Surgeon and Consultant?

And also concurred  by Plankruns Surgeon.

As for erectile dysfunction; there has been no mention of TEMPORARY !

Based of what my Surgeon has stated, I'm of the understanding there is a 10% risk of being unable to maintain an erection after J pouch surgery, such a figure is also stated by my Nurse.

Erectile dysfunction is my main concern.

I've not read any studies, the only information I've acquired is from my Consultants, Surgeon and Specislist Nurses.

Figures such as a 1-2% risk of permanent impotence is more accepting but still a huge concern.

I need more evidence of Uk failure and permanent impotence rates.

As said, my surgeon paints a very bleak picture of J pouch Surgery, to an extent, I believe he's attempting to change my mind.

Anyone considering J pouch surgey in the Uk should not disregard the percentages quoted by Plankruns as it appears such figures maybe specific to the Uk.

Update, Update, Update, Update;

My surgery is due this year at St Marks Hospital, London.

Although I've had the ileostomy for some time, this will be the 2nd stage operation, thus creation of the J pouch and loop ileostomy.

I still have my reservations, although I'm sure I will go ahead with it.

My Surgeon at St Marks has a totally different perspective on life with a J pouch, there is no doom and gloom or emphasis on the number of times the pouch is emptied or the possible complications during or after surgery.

Also, the percentages of risk of impotence after surgery is stated as less than 1%, not entirely sure what that means and it's still a major concern, but it's much easier on my mind than a figure of 10%, which was mentioned by the first surgeon I visited and also by his specialist Nurse.


Thanks Monkeyme for highlighting the options available on the NHS and referencing St Marks Hospital.


Thanks too, to Goody2shoes who also mentioned the options available.

My biggest fear is impotence and the slight risk of infertility issues.

I'm also concern regarding recovery time after surgery.

After the forming of my ileostomy, once out of hospital, although mobile, I struggled; I had difficulty standing up, getting into and out of bed, wasn't well enough to shop for myself or prepare food.

I believed this was due to the recovery of the UC flare up as well as the surgery; the incision was still stapled.

Once discharged, I returned to where I would have help whilst I recovered.

On this occasions, there's no one to help care for me, unless I manage to acquire a new girlfriend before my Hospital admission.

As I won't be recovering from UC, I'm hoping my recovery will be much quicker and I'll be able to take care of myself.

Through-out my illness and after my operation, I've never experienced any pain.

When discharged from Hospital after my ileostomy op, I wasnt prescribed or required pain relief medication and I was driving soon after.

I moved to where I am now to be close to friends but they have since moved away.

Yeah a 10% risk of impotence is what is normally mentioned, which in my opinion, is a huge risk.

However, my current Surgeon at St Marks has explained that the first Surgeon I visited is actually a cancer specialist and although able to and has performed J Pouch surgery; cancer specialist are use to cutting more out, which is why there is a higher risk of impotence.

The Hospital performing my surgery, St Marks, London, is one of only two specialist centres within the UK. My surgeon and his team perform 20 J pouch operation per year, mainly due to UC and the risk of impotence is less than 1%.

A risk of 1% or less is still a concern but its such a low percentage, it has convinced me to go ahead with the surgery, although there's still time to back out.