Update After Nov 1 Rectum Removal/Surgical Wound

[Diane C]

Quick update for this week.

Yay -- my wound is finally healing. It's decreased in diameter and width/length so much that although Blue Cross approved the insertion of a bovine graft, the wound care nurse decided not to pursue that. So, the home health nurse continues to come M, W, and Friday and is applying some medication and covering it. I continue to focus on protein (and Juven) -- and dehydration. Tonite is Passover -- going to my mom's in MD. I'd like to get an exercise program going soon with a PT (foot doctor said YES) asap.

Wishing all a nice Passover, Easter, Friday, wkend and the best health you possibly can enjoy.

Thank you so much for your support!

Diane C.

[Button]

Diane:
That your perianal wound is showing continued healing and granulation tissue is a wonderful gift for you to receive on this spiritual period of Passover.

I hope you can put all the whirlwind of the past several months (surgery, hospital and skilled nursing stay, oozing wounds) to the back of your conscienceness, so that you can enjoy Passover with your mother. Just “being” in the moment and fully appreciating time shared with each other.

You’ve kept a focus on moving forward, despite some setbacks in wound healing along the way. You have been able to find your inner strength when you needed it the most. You’ve done it. You have succeeded.

Continues best wishes,
Karen

[abbyjoy58]

Does the rectum removal help cure Pelvic Floor Dyssentria and rectal defecation disorder? Do you feel constipated and having it to find it difficult to poop with an ostomy?

[Diane C]

Many thanks, Karen! With the 2 broken toens (!), it's been rather uphill but yes, I think we turned a MAJOR curve. Home health nurse back Monday. To Wound Care Clinic next week. I look forward to focusing on Spring's prettier sights. I can feel the wound closing + appreciate the sensation!

Next up: calling the PT studio and arranging sessions asap... and then much more walking and exercise but with care. The need to lose weight -- esp on my abdomen -- is high on the priority list and not just for aesthetic reasons. I don't want a hernia or complications. All the puffiness is NOT distention.

Wishing you beautiful flowers or whatever you enjoy on this holiday wkend. I wish I could order you a pooch to snuggle with for the wkend. Weather here is nice. Hope the same in OR.

T-you!

Diane C.

[Diane C]

Abbyjoy58,

I was diagnosed only in the 1980s with a disorder similar to yours. I inherited it from my father and was constipated all my life as was he. After MANY kinds of treatments (I still debate writing a book or blog to help folks tho unsure how to reach the audience) from galvanic stimulation, biofeedback (superb set-ups in Chicago, Milwaukee, Sherbrooke/Quebec – and I imagine the start of the art has vastly improved in many cities now; Google Jeanette Tries in Milwaukee whose PhD focused on relaxation of anal/rectal/vaginal/other muscles in the pelvic floor), botox injections in my pelvic area, and MUCH more, I opted for a Malone Appendicial Colon Enema (MACE) procedure. However, since my anal muscles did not relax with synchronicity, the MACE didn’t really help – but did help others I was in touch with. You way want to contact the International Foundation for Functional Gastrointestinal Disorders and request their info and doctors to explore this (IFFGD.org). That fabulous, small organization that focuses on functional GI disorders like pelvic floor syndrome led me to phenomenal doctors.

After the MACE, I had a colostomy in 2002. This might be the answer for you. It wasn’t for me for many reasons. Irrigation helped a great deal – and I still used the MACE tube made of appendiceal tissue within my abdomen for irrigation when I had my colostomy.

Removal of my rectum was not to help with constipation. I finally opted for an ileostomy because of continued slow motility in some areas of my large intestine, especially where stool collected in my sigmoid causing much discomfort and distention unless I irrigated – and I’d need to irrigate more than 1x/day. Surgeons had told me back in 2000 that the ileostomy was what I needed but I just wasn’t ready for it – and since November 2018, I’ve been adjusting to the output with my ileostomy and various ostomy products.

You’ll need manometry and other tests of the sphincters, nerves, and your condition to see if a colostomy or ileostomy will help you or maybe you've had these. If you already have the diagnosis, I gather you have a doctor. Follow up with that person and get more tests.

Yes, an ileostomy has ended my days of constipation and my colostomy helped.

The rectum removal is unrelated to constipation. It’s due to diversion colitis – a different issue. You can find information at this discussion group on the subject by putting the words in a search. Many ostomates whose rectums remain intact after surgery, especially if they had no cancer, deal with diversion colitis and a mucous output caused by the lack of healthy short-chain fatty acids found in stool that are diverted into the pouch after an ostomy and no longer reach the anorectal canal. Ostomates find various ways to deal with this, including a method of cleaning out the mucous, but my anorectal canal was inflamed and since I was getting other surgery anyway, we decided to remove the anus and rectum. That’s not your primary focus now but you might ask your surgeon or GI doctor about it to consider the effects of diversion colitis that affect many ostomates. My experience has shown that many doctors underestimate the discomfort that diversion colitis can cause.

I encourage you to do some research and read up. There’s much published info now on all this which was sorely lacking before 1980. You may start with IFFGD.org and the many posts here which you can search.

Good luck!

Diane C.
1976 – Partial sphincterotomy of involuntary anal sphincter due to constipation; temporary relief
2000 MACE Procedure
2002 Colostomy
2015 – Surgery for peristomal hernia; insertion of mesh; removal of abscess in sigmoid
2018 – Creation of ileostomy; removal of hernia, mesh, colostomy, MACE, anus and rectum

[Diane C]

All,

Wound continues to decrease. VERY small. Yay!

I'm at the Wound Clinic NEXT Friday. Maybe that will be IT? I hope? The bovine graft won't be scheduled. Until then, the home health nurse comes Mon and Wed to check it and insert Prisma for healing. Logging off to eat some protein. Still on Juven. It's pretty small to insert any kind of dry dressing. Fingers X'd. Tomorrow, I'll call the PT organization to arrange for exercise sessions -- and then get to Gold's after that. I REALLY need exercise... even more walking. Speed-walking to the theater where I am ushering does not count!

Wishing you all well. Still thinking about the August conference. Have not decided. Would like to see the exhibits most of all and learn more about ileostomy products.

Be good to yourselves! I'm working on that... meditating, etc.

Diane C.

[Diane C]

As of Friday, the hospital's wound care clinic stated I'm healed. Wound has closed. FINALLY!

I'm still consuming protein and finishing up the collagen-filled Juven (my hair is much thinner after this surgery -- and I didn't have that much to begin with -- genetics...). I'm cautious as I know wounds can re-open.

Now, I can order my own products again as the (wonderful) visiting nurse no longer must. And yes, Juven does also give me the side effect of diarrhea. Definitely ordering high output pouches. Never rec'd my sample from Cymed Microskin so just requested again -- the longest pouch possible. (Shorter on staff now?) If I can't receive Cymed, will order high output pouches elsewhere until I finish the Juven.

Calling PT agency on Monday. SO need exercise! Abdomen still bulging.

Thx for all your support!

Diane C

[JerryNYC]

By the way, Aquacel silver was recommended because it has a local antibacterial action. The antibiotic was likely ordered later because the staph infection may have gone deep into the wound where the aquacel silver could not reach.

[Diane C]

The wound nurse was not thrilled with the product or type of aquacel silver. The surgeon and home health care nurse regarded it as helpful. Seemed to do a great job in the beginning but she later opted not to use it. Whatever -- the wound finally healed in May, thank goodness! Thank you.

Diane C

[To Dream a Dream]

Excellent news, Diane. May you continue to recover. We've learned so much from sharing your difficult journey.

[Diane C]

Thank you, To Dream. I learned a lot, too! Wound care is a subect unto itself. I'm glad the surgery is over. It packed more of a punch than I expected although doctors at the Cleveland Clinic in FL warned me of this. I'm now getting physical therapy 3x/wk and want to increase the exercise. Learning about my ileostomy. Investigating products. I wish I didn't need the Immodium to lessen the output but I'm not consuming as many vegetables as I want/need to so for a while, will continue with it. Life is a learning process. I wish we all could get our diplomas tonight!

Diane C.

[To Dream a Dream]

Well said. One thing I have learned over the many years is to make the supreme effort to stay hydrated.

[Diane C]

To Dream,

Yes, hydration is key -- for SO much. This product did help me get going although I love tea and had quarts of it (mostly uncaffeinated) after surgery: https://drinkcirkul.com/ Cirkul has the best customer service. I think this started as a kickstarter campaign or something like it. Flavors and ingredients vary. You don't need a sweetener but can get flavors with a bit of sucralose or stevia. I chose the latter. Check out the varieties. If you order it, do mention me in Arlinton, VA. Happy drinking!

Diane C