TOTAL COLECTOMY PART 36

Hi Hodaya,

Others will never understand that a stoma is preferable to what we had before. For me it is better than (not better than my original body), but was a life saver from the scarred shut colon and rectum I received from that unneeded 2006 surgery. So even I can say, YES to STOMEE! I just drank way too much caffeine and am outputting like mad. I GOTTA go back to decaf for sure. There's just something about a cup of caffeine in the a.m. BUT I gotta control myself.

Trying to get caught up after return from vacation with appts. etc.

I WISH they'd just make Lizzie a stoma (made correctly) and get that girl back on her feet. What is their issue with all this postponing? I will never understand the medical world.

Rosemary

hi Rottiemom,

i'm glad your surgery went well and you're happy with it. sounds like you're doing really good and i'm happy for you. are you still on a low residue diet?

i also had the colectomy for CI a year ago, but after 2-3 months i got constipated again and at 6 months post op couldn't have spontenous bms again, so i now have an ileostomy and i love it! i feel great!

sounds goooood to me :)

o.k i'll put'm all in the blender and just pour it into my throat... nahhh just kidin :D lol

Hodaya,

I have been released to try whatever foods I might want to try. So far, things are tending to run thru me very fast, within 60 min of eating. Surprisingly, I do ok with most meats. But fiber, in fruits or veggies, not so good. My sole vice is Diet Coke in the morning. I've found that liquid breakfast is ok, like Carnation Instant. How ironic that so many products are boasting about fiber content now!!

My dr wants me to decrease the amount of fluids I drink, in an effort to decrease my frequency. Sounds like some here have the opposite issue!

My biggest problem is fatigue. I have other chronic illnesses, but I would love to hear how others make it thru the day. I am still napping most days, and my gi dr says that it isn't from the surgery---I am far enough along in healing (4 months now).

Any tips? Thanks all!

Rottie, have you tried eating bananas, peanut butter, potatoes, white bread etc. if you have increased output, then your diet should consist all the thickening foods. oh yeah, and avocado, this one really thickens the stuff. and how about trying immodium, lomotil, metamucil - those can help thickening your output. also, what about all of those supplements, like gatorade, ensure, boost etc - maybe those can help with your energy?

i agree with Rosemary, if you have too much liquid output, then you're prone to dehydration, you MUST drink more, not less. it's really odd what your dr said.

yes, you're right, i'm having the opposite problem, i had my colectomy due to CI exactly a year ago, but it seems my small intestine is also extremely slow and i'm still constipated. i was affraid i would have too much diarrhea post op, needles to say that didn't happen, but gosh..... i didn't expect to be SOOOO constipated still :( i actually wish i could be more like you, cuz all drs say that diarrhea is much more easy to manage than constipation.

anyways, i had an ileostomy surgery about a month ago and it's so much better with the ileostomy, i love it. i do tend to have blockages very easily, so i have to REALLY watch what i eat. it's not easy, but i manage much much better now with the ileostomy - this is heaven for me compared to 17 years of nonfunctioning system. life is good :)

Hi Everyone,

 

Lizzie has been scheduled for surgery tomorrow, Wednesday, August 18...many, many prayers are needed. Dr. Luca Stocchi will be operating. She does not know what time surgery will be yet, but Dr. Stocchi did come and talk with her for awhile. He said that this is going to be a very long and delicate procedure.  

 

Pray for a smooth and flawless surgery, that there would be NO complications, that Lizzie's body would respond well to everything that is done. Pray also for guidance and wisdom for Dr. Stocchi and all of the other doctors in the OR. Pray that he would be able to make the best ileostomy in the history of ileostomies, remove all adhesions; pray against any infections, abscesses, clots, and hemorrhages. Pray for a full recovery and complete healing.

 

Pray for peace, comfort, and encouragement for Lizzie and her family. This will be her sixth major abdominal surgery since January 2008.

 

Thank you all so much and I will let you know more details as I get them.

 

Love to all!

 

Allie

Lizzie, GOOD LUCK honey!! will say a special prayer for you!

LIZZIE,

The docs are going to do this ileo and take down of adhesions as you've needed for soooooo long. I pray for you Liz with every ounce of my soul; you deserve a flawless recovery. Thanks for the update Allie.

Rotti,

Try drinking the water a half hour after you eat and a half hour before you eat, then of course at other times. This is what I had to do when my ileo was new so not everything got washed out of me. THis should help with the dehydration.

Rosemary

Marisa - I hope you enjoyed your family reunion

Val - I'd definitely take the multivitamin tablet. Absorbtion is carried out in the stomach and small intestine, so not having a colon shouldn't make a difference.

Allie - thanks for the update on Lizzie. Praying for her.

Hodaya - glad the pressure has started to fade. It sounds similar to when a patient, for example an amputee, suffers from phantom pain while their brain adjusted to the amputation.

Rottiemum - pleased to hear your surgery went well. Good luck with the new diet.

Rosemary - I inject VitB12 on a daily basis, as the malabsorbtion of vitamins and minerals is part of M.E. I know what you mean about people not understanding our health problems. Yesterday, when I saw my G.P she said that, in her opinion surgery was far too drastic, and believes I should contiune taking laxatives! I know people don't understand problems like Colonic Inertia and Anismus, so explained the symptoms in more detail.

Tomorrow evening, I've got another appointment with the Gastroenterologist. He's now seen all my notes and spoken to the surgeon, so hopefully I'll have a better idea of what is going on, and find out when I'm due to have the nerve study tests. Got a few new things that I need to explain to him, so I'm pleased his secretary called and asked me to go in tomorrow.

Hodaya, cookie and Rottie - Thanks for the advice regarding vitamins.

Hodaya - I do feel like I empty out enough - tummy is always flat now (oh boy but the saggy skin!). But very often I feel like I have to go but can't. Of course, I have to get used to what normal feels like after decades of not going.

Rottie - I'm also taking an extended release pain med for fibromyalgia. Since the surgery my biggest problem has been fms pain so I'm wondering if that could be my problem as well. Maybe I will stop taking it to see if there is any change in the pain levels.

Thanks again!

val

Lizzie,

I'm so glad Allie will be in Michigan and be able to literally "be there for you." Know that we all are there for you too, though at remote distances. I pray so hard for you that things go well and you become a successful ileostomate. Prayers and love for you now more than ever. Thanks for posting personally. You must be very weak and we appreciate the effort you must have had to use to post.
Love, Rosemary

P.S. If it's not to late for you to ask your doc, ask if he plans to use Seprafilm adhesion barrier. Tracy and I both had it. It lessens the number and denseness of any new adhesions that may form. It's worth a try. My adhesion lysis and ileostomy surgery had to be done open too due to the severity of my small bowel adhesions from what turned out to be the unneeded 2006 surgery for sigmoid resection. My doc at Lahey says open is the way to go if many and severe adhesions are expected. I was told that laporoscopic would not be safe for serious adhesions. So it sounds like you are in good hands. You are in safe hands. All of us are holding you too.