Medical Status of Boardmembers

[Milltown Row2]

The science involved is something else, the way you've approached things and able to relay that has been truly inspirational. It's obviously therapeutic and gives us a real insight into something that can be very personal to a lot of people but you update us during a difficult time for you and your family!!

I took my sister to her latest MRI scan on Thursday, chemo finished the week before, fingers crossed things seem ok, though waiting on the scan results can be nerve wrecking.

Just with the latest news of the death of Sarah Harding due to breast cancer, it really brings it home and how cancer is a bastard!!

[imtommygunn]

Jesus mr you haven't had it easy on this front either.

Great thread this.

[Ball Hopper]

On to the next phase with very little progress.

After the fourth treatment with the scaffold powder, the surgeon says that history tells him the space is probably not going to close fully as gravity seems to cause the powder to fall out quickly.  Since such spaces usually close within 12 months of the surgery anyway and we are now gone over 14 months, we are at the stage of "this is as good as its gonna get".

To best avoid future infection, it is proposed to staple the mouth of the space in the open position in a process called "marsupialisation".  This will make the space into a permanent dent or a pouch (hence the name) that will allow complete drainage of any fluids/solids that enter. 

The technical term is: "Endoscopic stapled marsupialisation" and Wikipedia says: Marsupialization is the surgical technique of cutting a slit into an abscess or cyst and suturing the edges of the slit to form a continuous surface from the exterior surface to the interior surface of the cyst or abscess. Sutured in this fashion, the site remains open and can drain freely. This technique is used to treat a cyst or abscess when a single draining would not be effective and complete removal of the surrounding structure would not be desirable.

Although I don't have any cysts or abscesses, you can see why this is preferred to just letting everything stay as is - the risk of infection when particles get trapped and fester is eliminated completely by leaving the space wide open to drain fully.

The stapling procedure will happen on Wednesday next, 13 October, on an outpatient basis.  To confirm there are no leaks at the back of the space, another water/dye contrast CT scan will be scheduled about two weeks after the procedure.  The surgeon may consider having that CT scan as the first item of hospital admission for the ileostomy reversal surgery, probably the last week of October.  Hospital stay could be up to a week.

Six weeks for the ileostomy wound to heal and about the same length of time for me to regain body functions will see me in great shape for Christmas.

Everything else is great, even the peripheral neuropathy is fading quickly, with only minor issues in the sole of my left foot.

As always, I greatly appreciate the support from everyone on here...I'm getting very close to the end of this journey and you have helped me immensely.

Hopefully next update will be giving the date for the ileostomy reversal.

[whitey]

God bless you.....you are a trooper

[Dougal Maguire]

Best of luck to you as you continue your battle. You really are an inspiration.

[bannside]

Fantastic BH. You are beginning to see the other side now...one more push. 

[Farrandeelin]

Good man BH. You're an inspiration to us all. You put all the other arguments here into perspective too. Best of luck Wednesday. You'll have a good Christmas le cúnamh Dé. If your body shows the same positivity as you do then you'll be flying it!

P.S. we all support you here, and we're all glad it helps.

[Jeepers Creepers]

Good Man BH. Thanks for the update. Keep'er going!

[J70]

Well done BH. Keep it going!

[JoG2]

Amazing BH. So inspirational.

[Taylor]

Exactly what JOG2  says - inspirational

[joemamas]

Great news BH
Very inspiring.

[Armagh Girl]

Fair Play to You BH, you are a total inspiration to us all!  Good Luck for the next few days/weeks and hope all goes well!   

[Ball Hopper]

On to the next phase with very little progress.

After the fourth treatment with the scaffold powder, the surgeon says that history tells him the space is probably not going to close fully as gravity seems to cause the powder to fall out quickly.  Since such spaces usually close within 12 months of the surgery anyway and we are now gone over 14 months, we are at the stage of "this is as good as its gonna get".

To best avoid future infection, it is proposed to staple the mouth of the space in the open position in a process called "marsupialisation".  This will make the space into a permanent dent or a pouch (hence the name) that will allow complete drainage of any fluids/solids that enter. 

The technical term is: "Endoscopic stapled marsupialisation" and Wikipedia says: Marsupialization is the surgical technique of cutting a slit into an abscess or cyst and suturing the edges of the slit to form a continuous surface from the exterior surface to the interior surface of the cyst or abscess. Sutured in this fashion, the site remains open and can drain freely. This technique is used to treat a cyst or abscess when a single draining would not be effective and complete removal of the surrounding structure would not be desirable.

Although I don't have any cysts or abscesses, you can see why this is preferred to just letting everything stay as is - the risk of infection when particles get trapped and fester is eliminated completely by leaving the space wide open to drain fully.

The stapling procedure will happen on Wednesday next, 13 October, on an outpatient basis.  To confirm there are no leaks at the back of the space, another water/dye contrast CT scan will be scheduled about two weeks after the procedure.  The surgeon may consider having that CT scan as the first item of hospital admission for the ileostomy reversal surgery, probably the last week of October.  Hospital stay could be up to a week.

Six weeks for the ileostomy wound to heal and about the same length of time for me to regain body functions will see me in great shape for Christmas.

Everything else is great, even the peripheral neuropathy is fading quickly, with only minor issues in the sole of my left foot.

As always, I greatly appreciate the support from everyone on here...I'm getting very close to the end of this journey and you have helped me immensely.

Hopefully next update will be giving the date for the ileostomy reversal.

HEALTH WARNING: DO NOT READ WHILE EATING

The stapled marsupialisation went off without a hitch on Wednesday with two titanium staples used to keep the space open.  The mouth of the space was also enlarged by "deroofing" the space.  I was quite sore for a few days but back to normal by Sunday or so.

Next up:  the long-awaited ileostomy reversal is set for 3 November.  I will have another leak test in the days before it to verify the only open space is the free-draining pouch. 

I'm told the normal hospital stay for ileostomy reversal is 4-6 days, so home 10 November is most likely.  Surgeon says he'll take action to avoid a hernia on that side by inserting a support mesh - the muscles have been idle for so long they need help for a while.  The opening in my side will not be stitched shut, instead it will heal itself from the inside.  So all they will do after the plumbing is reconnected properly, is just put gauze in the opening and bandages over that.  Daily gauze replacement plus new bandaging will be my task for the approx six weeks of recovery time, which takes me up to 15 December or so.

By the time the opening has fully healed, I expect to be at the new normal of bathroom/toilet function.  Getting myself potty-trained all over again will not be pleasant for me (and probably those in the house as well).  In fact, I expect it to be somewhat humiliating for a few weeks.  As I was always open about everything going on with me, I must declare that I do not look forward to the month or so of adult diapers in my immediate future.  I somehow doubt very much that sharing that experience will bring me the comforts previously gained by giving details on surgery, chemo, and so on. Hence the warning on top of this message - not exactly a breakfast reading/discussion topic.

The need for diapers is the fact that everything has shrunk and weakened.  The rectum is smaller and stiffer with much less capacity, while the muscles holding everything in are out of practice.  The expectation is that I'll have a lot of bowel movements once I get home - up to 15 or 18 a day initially.  Diet will play a big role in this and small, frequent meals are planned, with nothing after 6pm to see if I can get more than 3 hours of sleep at a time, even if wearing a diaper.

As the system strengthens up, with the rectum returning to a larger size, I hope to get down to 4 or 5 trips in the first hour of each morning, then nothing till the following morning.  It seems that as the rectum fills  and I empty it, it refills quickly as the body has to re-learn the art of sending everything in the colon down the chute at the same time.  Hence the 4 or 5 bowel movements in an hour, even after a few weeks.  Once empty, the colon will refill slowly and will be able to hold its contents for longer and longer - getting to almost 24 hours eventually.

I have been performing kegel exercises that are better known to women after childbirth, but I'm sure I will be under-prepared.  Strengthening the "pelvic floor" is such a strange concept - but I fully understand the incontinence that results from a weak one.  I'm also grateful that we decided to purchase a bungalow with two bathrooms - we will manage for the awkward first month or so and work the new habits into the routine after that.  Shower right beside the toilet might also be an unforeseen benefit to all in the house.

Anyway, I'm delighted to be nearing the end of my medical treatment journey with such a positive outcome.  I'll have scans and tests and so on for years to come, but this coming month will represent a huge milestone for me. 

Many sincere thanks again for all the support and I'll update again when I'm home - hopefully by mid-November.  After that, I can't wait to write the final chapter of my battle as I return to a normal life.

[general_lee]

Maith an fear! you can't keep a good man down 💪🏼