Surgery AGAIN!

[Diane C]

Hi All,

On Friday, March 6, I'm having MORE surgery. I hope I'm the exception to the rule and that once you have a colostomy, abscess, hernia, and ileostomy, no more surgeries are ahead. I'm no longer in shock. My last surgery seems like yesterday -- Nov 2018. Since then, I've had recurring urogyn infections and TOO much Cipro which obviously my body became resistant to. No CT scan, MRI, vaginogram, or even exploratory surgery with anaesthesia located a fistula which APPEARS to be lurking in my small intestine and this situation has gone on for a year. It SEEMS that a leak is causing ongoing infections that no longer are painful but the bacteria keep showing up. My energy is low -- really tired. Not much swing dancing but still ushering at theater and taking care of my mom who turned 103 on 2/27! I was looking for Assisted Living for her but that's on hold for now. She's in Independent Living and I hired caregivers and pray she'll be ok.

This time, I totally respect and LIKE my TWO surgeons at Fairfax Hospital in N. Virginia. A urogyn surgeon, who reports that bacteria are probably in my uterus and found that my cervix was in poor shape, has decided to do a total hysterectomy. At 68, I'm ok with this and won't have to worry about ovarian or cervical cancer which are definitely not fun. (Odd that my mother suffered from a hemorrhage in her 40s; back then, a total hysterectomy without a diagnosis was par for the course so we never learned the problem and my mom was lucky to benefit from very good health; it's my FATHER who was chronically constipated and distended and who dealt with pelvic floor issues that I inherited all his life.)

The more difficult surgery is locating the fistula which may be hiding behind my uterus. The tissues and organs there are all packed in tightly and after 5 (?) OPEN surgeries (only my colostomy was performed via laparoscopy), I've got adhesions and scar tissue. Wish me luck in building up my abdominal muscles after this surgery because I never did after the last 2 surgeries. Once the uterus is out, it'll be easier to find a fistula or other problem. If found, the surgeon will do a resection of the small intestine. We discussing changing the location of the stoma which was (wrongly?) placed on top of my MACE scar but it's working and best not to mess with it -- and I'd wind up with even more scar tissue. If the colorectal surgeon finds anything amiss, like the formation of a new hernia, she has my permission to "fix" it. They expect me to be in the hospital about 5-6 days -- until my small intestine and ileo are functioning again -- and then I'll come home. So, I've a mountain of cleaning and organizing to do and want to be available to my mom asap.

I recently told a young gal's cousin about this fantastic discussion group. The gal has suffered from Crohn's and her ileostomy this morning went well but she's nervous. I hope she'll join us and post. I know you're all amazingly supportive.

I also just received a package of Hollister supplies with a large output pouch and hope these will help. The Coloplast pouches actually were doing a good job along with Brava strips but I was ready to switch. Yes, I keep the spout on -- helps with emptying but pancaking remains a problem. I'm ordering a large, wedge pillow for sleeping. Found some new strips that looked helpful so didn't order more EASE strips and pray these do the trick.

After or during recuperation, I will experiment with the FODMAP diet plan to help with the gas I'm experiencing from small intestinal bacterial overgrowth (SIBO). I think the urogyn bacteria are adding to the mix... but am unsure. The distention is difficult and also causes leakage.

I'm wishing you all well and will try to post with an update. Thanks for caring in advance.

[BillGK]

Wow. Again. They certainly will find the cause of this, and hopefully that will be the end of it and you will finally be able to move forward with your life and be past these gut issues!

[Jimbob]

Will be praying for a good outcome for you Diane.....Jimbob

[To Dream a Dream]

I am so sorry, Diane & will be praying for you as well. Have no practical advice as I have never really examined a large output pouch, except to ask if it can be flushed out with clean water using a large bulb syringe? Also, I highly recommend taking your own supplies with you if hospitalized. God bless you & your mother.

[Diane C]

Thanks so much, BillGK, Jimbob, To Dream, and others. Really appreciate your support which helps SO much.

Definitely bringing my own supplies and yes, can clean high-output pouch with water. Have a bulb syringe although they are not made as well as they once were.

Well, I hoped to write a blog or book about this journey -- so more pages to add! It will go well. I trust these doctors a lot although can't say that the hospital's pre-op department has been on its toes. All will get done and wish I could beam down a magical helper to organize me at home and clean my bathrooms before the plumber arrives on Wed.

I've arranged physical therapy for my mom. Called her this morning as my brother and sister-in-law were here for a visit for her birthday but unsure they'll return while I'm recuperating. She had no idea where they went at 6 AM E.S.T. I had to remind her: to the AIRPORT to return to the West Coast. Old age is hard for all. She'll be on my mind but the best way to help my fabulous mom is to get well.

Endless gratitude -- including to our webmaster!

[To Dream a Dream]

Your resilience & positive outlook encourage us all, Diane. God bless!

[Diane C]

Thank you so much, To Dream a Dream. It's weird... ever get those questionnaires that ask about your health? From Fine to Lousy? I honestly don't consider myself in ill health most of the time although I've had breast cancer, back surgery, and this loverly gut with so many surgeries and SIBO and the FODMAP diet plan yet to figure out. I read about people in much worse condition and I'm grateful most of the time. Sure, I get down but I think the issues have solutions. Would rather be at the theater or swing dancing than searching for answers... and not exactly looking forward to MORE surgery. But "it is what it is." This discussion board offers so much help, wisdom, caring, and positive vibes. So thank you!

Am not ready yet for the surgery tomorrow so after I add a post about adjustable beds and our support group's spring regional conference, I'd better get back to business... and enjoy some apple juice. Tomorrow -- just sips of water.

Be or get as well as possible. With appreciation!

[To Dream a Dream]

Great to see you are now post-op & up to contributing to the discussion board. Hang in there. Rest & hydrate. And know you have my prayers & I'm sure those of many other members who follow your progress.

[Diane C]

Hi all,

My Internet access has been spotty. Right now am tired and need to hydrate but have been home since Tuesday. Very quickly, I'll post that the cause of the ongoing urogyn infections was never determined. CT scans, MRIs, and other tests couldn't "view" behind the big block of scar tissue behind my uterus. This was my 4th open surgery. Obviously, we all hope for laparoscopic procedures which are so helpful. My MACE in 2000 was the first. Then, my colostomy in 2002 was created by laparoscopy. But the MACE used the appendix to create a tube within my abdomen over to my navel. I used the trusty MACE to irrigate when I had a colostomy. Unfortunately, in 2015, I developed an abscess and some "strangulation" of the colon below the stoma -- open surgery to fix that. My BIG surgery in 2018 to switch to an ileostomy and close the colostomy (and more) was #3. This last surgery -- brought on because no doctor could detect the cause of nasty infections -- was #4.

So basically, due to MANY adhesions and scar tissue, very little could be seen until that was cut away. My very good colorectal surgeon spent 3 hours cutting away scar tissue -- and then had to stitch very small parts of my small intestine. I had a hysterectomy to avoid future infections (cause never found -- mired in scar tissue) except for the left fallopian tube and ovary. Too much scar tissue was there and the surgeons decided that cutting more would only create more problems.

This has been the toughest surgery to bounce back from which surprises me but it's also the one with the shortest hospital stay. No one suggested going to a skilled (or unskilled -- like last time!) facility so I went home. MUCH to do at home (uhhhh, both toilets stopped working right before surgery-- hired a plumber -- and soon hope to have the energy to clean and order 2 new toilets -- they are less money than replacing the parts in the tank!). I can't tolerate the prescription painkillers though took a couple of Tramadol in 2018. Too much nausea. This time, it's been Xtra-Strength Tylenol -- or falling asleep. Need to increase my protein intake, WALK, climb stairs (clean 2 bathroom floors!), etc. If one was to have surgery, I guess this bizarre sci-fi time is as good as any other... I'm getting a lot of rest (too much?) and still want to order the wedge pillow.

Yes, I was warned that the odds of this recurring are pretty high. Sigh. But I know the warning signs and to get myself to surgery if I feel nauseated, constipated, experience a blockage, or bleed. To help with scarring on the OUTSIDE, I'd begun to use the services of a very experienced acupuncturist who'd worked wonders with others who had other kinds of scarring. The scar from my colostomy was disappearing and I wonder what was going on below? We curtailed acupuncture due to the infections but I may start going to her again once recuperated.

Made appmts to see the colorectal and urogyn surgeons within 2 wks. Need to get back on my supplements and recreate normalcy but very fatigued.

Grateful my 103-year old mother in an independent living facility in MD is doing OK. We chat on the phone 2-3x/day and she seems to have accepted all the changes that the virus has brought to our lifestyle well. My mom has seen so much -- and is my biggest cheerleader. Vice versa is true!

Hoping that health providers and others in the service industry will be safe and our level of compassion multiplies. Everyone, take good care!

[paula]

Hi Diane, just saw this and was so sorry to hear you had to have surgery once again, but are now home. you might remember me from my previous posts, where you also posted and helped me. My problem to quickly resume, is that I had a colostomy for about 16 years and then a few years ago, started to constantly go to the er with really bad cramps and violent bouts of vomiting. Finally, they diagnosed scar tissue, and I was operated on last year, in February to remove them. Got an infection, and had to be operated on a second time which left me with an ileostomy this time and over one month in the hospital. Had a couple of episodes last year after surgeries, but since last August, all was well, even though very tired and still sometimes nauseous, etc, but able to manage at home, until this past Tuesday, that once again had to go the er, diagnosed with partial obstruction and stayed a couple of days. Very disappointing, but the doctors said this would happen unfortunately. I've been walking a lot, doing some yoga, drinking lots of water, doing some exercises specifically for scar tissue and even had a therapist come to the house to do some manual messages. Anyway, as you said, there's always someone worse and am thankful to be back home. Would appreciate from you or anyone else any other suggestions to do with this scar tissue problem, foods to eat, not to eat, etc, etc. Wishing you all the best in your recovery and God Bless your mom at 103 years old.

thank you. paula

[ron in mich.]

Good luck with the surgery hope all goes well and speedy recovery.

[Diane C]

Hi Paula,

Am so sorry to hear about the recent challenges. Scar tissue and adhesions are tough -- literally. Obviously, once you've had open surgery a few times in the same area, they will be a concern. I don't mean to sound pessimistic and don't feel that way now, but the expectation is kind of high that I'll be facing more surgery due to this, especially because to get at scar tissue and adhesions, you need more open surgery -- the cause in the first place! I wish there were a way to aim a laser at them from outside but we're definitely not there.

The ONLY preventive I know of (other than avoiding open/direct surgery which isn't always realistic) MAY be acupuncture. An acupuncturist with much training in Alexandria, VA, had shown several of us on Facebook results from her work in the last year. She had diminished the appearance of scars on the body -- on the OUTSIDE. We had just started to get going when I was bothered by urogyn infections and stopped treatment. When I'm fully recovered or maybe a bit before, I plan to go back for more treatments but I've no idea if acupuncture can help below the skin.

When I had back surgery in 2006, the physical therapist massaged the area of my incision often. It seemed to help, my scar itself is very small, and I feel absolutely no pain there. I asked the surgeons at the hospital if massage could help prevent more scar tissue within my abdomen and their answer was negative. However, I do think massage can work wonders (wish it were less costly!). Years ago, when dealing with pelvic floor pain, I'd get massages every 2 weeks-- even intestinal massages -- kind of new agey but this massage therapist was amazing and even dislodged a quarter from a kid's gut -- and absolutely believe they helped somewhat with pain -- or maybe with stress -- which can cause pain, too. So, I'd continue with the massages. I'm not really in the know about all this but had better become so as it's a condition I'll need to be wary of for life. Maybe I'll start a new thread -- or I bet there already is one up here we can read.

A friend who's a doctor told me that years ago, physicians considered placing a steroidal mat over the abdomen to reduce scar tissue after surgery but this never panned out.

I'm no doctor so for all of the below, check with a professional, please! Our conditions may be different. I had a hysterectomy along with removal of scar tissue and adhesions near my small intestine and elsewhere. If you find valuable details, please do share and take care of yourself!

Here's a good URL for overall scar tissue info. https://www.healthline.com/health/scar- ... #treatment

A non-conclusive study about acupuncture and scar tissue: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6415480/

Abdominal massage (I'd take it easy on this and have no knowledge -- will ask a yoga teacher I know): https://www.modphysique.com/post/2018/1 ... -treatment

Yoga positions/exercise to help prevent adhesions after surgery (I am not ready for this and plan to walk stairs -- or just walk!): https://www.livestrong.com/article/3597 ... adhesions/

More Yoga and BREATHING -- I like this, esp as I had a hysterectomy. https://www.yogajournal.com/practice/yo ... sterectomy

For ME due to hysterectomy: https://www.youtube.com/watch?v=0I9pr3dPcss

About adhesions: https://www.youtube.com/watch?v=2kTJZAHHrFI

HYDRATION! https://advancedtissue.com/2014/06/hydr ... d-healing/

[nickolas]

Hope you have a speedy recovery with out issues.

Thinking of you,

Nickolas

[paula]

Hi Diane, hope you are doing well today. Just wanted to thank you for taking the time to reply to my post. Yes, I also asked my doctors about massages, and they also said it wouldn't do much good, but I feel like you, that it does. Unfortunately, with the coronavirus, my therapist has stopped working for the time being, so I will do it on my own and continue to do what I've been doing. We are now being advised to stay home, so all this will be done at home and just pray I don't get some kind of flare up. Yes, it would be nice to hear from other people who have this problem, scar tissue inside, and that some other solutions could be available. I will go on the sites you mentioned and just keep moving forward. Wishing you all the best and keep in touch.

Thank you again.................paula

[Diane C]

Many thanks, Nickolas and Paula. Appreciate the good wishes.

Paula, massage may be helpful but do be careful. Since I just had surgery, I'm taking it easy with that. It does help pain if I massage lightly and use a healing cream or oil on my abdomen. I'm certainly not massaging the area with great pressure since I just had surgery. Of course, at this time or maybe already, scar tissue and adhesions have formed. Ah, life.

This pandemic is affecting all of us. For better or worse, I do need to get out and walk. Was surprised that my urogyn surgeon warned me about stairs as I had a hysterectomy. I only have 7 IN my condo -- more outside. I've been kind of overwhelmed by some unfortunate family issues that took my focus away from health -- but I'm back now. I'm careful on the stairs but absolutely need to walk as I was doing in the hospital. Frankly, it was so much easier there with food delivered, no laundry to wash, etc. I'm trying to be more organized about everything but it is a challenge.

Take care and be safe!