Total Colectomy part 26

HI everyone! ANother quick hello as I'm on the ship!

lizzie, so sorry you're in pain and not feling yet YERT.. but it's early into your recovery, and I'm sure each week will get better! Glad you are pooping = that's a GREAT thing!

Hodaya, hope you are able to get your work sch. worked out.. I'll catch up more with you later!

RoseMary, have you read my posts where now the colon doctor isn't sure I have the sigmoid ocl? Not sure yet what is going on.. I think (I KNOW) something is blocking the stool.. how eventually did they figure everything out with you? DId you bring your doctor all your tests?

Tracy, I haven't had any anal surgeries, but I do know things are different since my pelvic surgery.. did you by chance have a rectopexy too? I did, and my uro -gyn thinks this caused a kink.. because of the extra loops of colon. My colonoscopy did show my sigmoid scared and twisted.. most likely from pelvic surgeries. He too thought I was too young to have a resection done...

Jen, try and not focus and worry too much - I know the clock is ticking closer!

Trouble is they don't know what it is like not to poo!

I'm doing pretty good on the cruise.. and last night took Milk of Mag. with is something I recently tried. It worked.. a little too good! I woke up and have been awake in the middle of the night w/ diarrhea! I even had a small accident!! However, my tummy feels good this AM and it was worth it!

Take care everyone.. I'll catch up with everyone else ASAP!

Hello all...

Just got back from the surgeon. I have a hematoma under my inscision, but otherwise the CT looked good for no infection. He is admitting me right now from home for hydration and pain control. He said I am very distended and just did not look well. I will keep you updated. I had been walking and everything, I just could not get the pain  under control.

Lizzie

Marisa,

Just wondering. When you have days when you can't go much, do you get that horrible rectal fullness? It just feels like I have a ton of cement sitting in my rear and I can't get it out; even after one small meal. Also, I may be able to push tiny amounts out, but then my rear gets SO sore and painful. I'm just so sick of this.

Grape juice doesn't work nearly as well for me as it did at first. I'm still drinking prune juice most days. I hate the taste, but it at least gets something out. I haven't tried miralax or MOM yet, I'm saving that for if and when the prune juice stops working. Before surgery neither worked, but hoping now they will if I have to resort to them. I forgot, do you have pelvic floor issues??

This is just not what I had imagined; I honestly thought I'd have diarrhea like in the beginning. I so wish that was the case!!

Lizzie,
Hang in there sweetie. Sorry about the humatoma, but at least you're pooping. Just rest and try to eat a little...

Everyone else,
Hi, gotta get back to work, will talk later.

Post Edited (Janiepain) : 10/14/2009 8:26:35 PM (GMT-6)

Jenise,

Glad you're doing good on the cruise. If Milk of Magnesia worked so well, why not keep using that as needed. If you're able to go, why have any surgery? (I'm just playing devil's advocate, but if I had all to do over again, I would just treat my original issue.......incomplete rectal emptying sometimes, other times fine) medically not surgically no matter what any test showed.

To answer your question, my defecogram was done on a machine that did not use barium paste. I had the lying down dynamic pelvic MRI that showed my anorecetal angle widened normally for defecation and angled normally for continence PRIOR to 2006 surgery, but then I also had a defecogram done with ultrasound gel contrast, but sitting up on the MRI commode (at a Boston hospital...very advanced machine.) However, the radiology resident mistook a loop of small bowel descending into the rectovaginal septum for my sigmoid colon,). Her work was not checked by her supervisor as is normal protocol. Three colorectal surgeons then erroneously opined that I needed my sigmoid colon out based on the faulty report. They also all viewed the actual DVD of the defecogram so they apparently didn't know a loop of small intestine from a loop of sigmoid colon either. These were top hospitals with one of america's "top docs" where I sought surgical advice. All thought it was my sigmoid colon due to a resident saying (in error that it was). The doc I finally went to saw in surgery that my sigmoid was not elongated and proceeded to remove it anyway, then did multiple other unconsented procedures. Then did not follow-up on complications. Due to this surgery I lost the use of my rectum, colon, and temporarily my small intestine due to scarring. Then luckily I found the one doc who removed the adhesions from my small bowel and did the ileostomy which was all that could be done to save my life. I only found out that the defecogram had been read wrong when I sent the DVD to a forensics company then had it reviewed by 4 other pelvic radiology experts across the US and in Europe in 2008 in preparation for my suit. I never thought to have the accuracy of the test double checked prior to surgery as I'd had the test done at at top Boston GYN hospital.

If there is doubt in your case as to whether it is your sigmoid or not, I would have ithe defecogram DVD reviewed by other radiologists. You don't want your sigmoid removed if it's not desceding. You could also have a repeat of the defecogram at another hospital. I've come to the conclusion that tests are only as accurate as the people who read them. Also one test can be interpreted differently by different radiologists. Hope this helps. Enjoy your cruise. I hope I stay well as I'm planning one for jan-March around south america. Yahoo!

Marisa, good for you for keeping on with your passions in life! I am so far keeping up with my passion of international travel, bag and all. We all deserve FUN!!!!!!!

Lizzie,

Personally I'm glad they readmitted you and think they sent you home WAY too soon. I hope they can get a handle on the pain for you and that you have a better recovery. I sure am glad you are able to poop after all this. Will send good wishes your way.

Sincerely, Rosemary

hi @all

chronic intestinal pseudoobsruction is not another name for colonic inertia or oligive-syndrome. I was diagnosed with CIP last December after a subtotal colectomy hadn't brought me any relief for my severe constipation (my docs thought I only suffered from CI), severe pain, severe nausea etc.

CIP is very rare, even rarer than CI.
Chronic intestinal pseudoobstruction basically means SEVERLY paralyzed/slow entire GI tract (at least small and large bowel are affected, often stomach and even esophagas and bladder can be diseased) to the degree that you live in a permanent subocclusion-like state. LOTS of pain!
By defintion there must be signs of subocclusion (dilated bowel loops, air-fluid-levels) on plain films/x-rays of the small and/or large bowel.
So with CIP CI can be involved.

Colonic inertia only describes severe dysmotlity of the colon.
Oligive-Syndrome often occurs after surgeries and is an acute! (functional, not mechanic) obstruction of the colon (with characteristic obstruction patterns: dilated bowel loops, air fluid levels) mostly due to trauma etc. It doesn't describe a chronic condition.

Sarah

Hi to everyone -well I started, had my last meal- a bagel with creamcheese this morning, was delicious and for about 2 hrs have been drinking the poison called= Golytely- I have it chilled with a straw and follow each gulp with apple juice. Still waiting for it to kick in. Also waiting for my phone call from Medical College of Virginia for my OR time tommorrow. Got a place for my dog to stay and going to take him there tonight, then put my soap and a few things in a bag and go to Richmond- 2 hr drive. Friend is taking me. Trying to say goodbye to my colon- its hard to loose parts of yourself. IN 2006 lost ovaries, uterus, appendix, In 2007 lost bladder, urethra, right colon made into pouch for urine, IN 2008 lost gallbladder, adhesions and hernias. Looking forward to recovery time, then onto a new big city and a great nursing job with my pup. love to all my new friends, Shmuel's mom

best of luck Shmuel!!!! my thoughts and prayers are with you!!!!

Shmuel,

Good luck....hope everything goes smoothly!!

janie

Hi Girls,

So sorry I haven't been on lately, miss you all.  I was trying to read quickly to catch up but soooooo much has been going on with you all.  Please know that you are in my prayers and I will be back on soon when things are straightened out at school.  Things are very stressed right now; I'm filing a greivance against my superintendent and to top it all off I have a urinary tract infection which is iritating the stent a LOT!!!!!! So life is not easy at the moment but I'm praying that it will get better, please say a prayer.

Lizzie-Love you and praying that you are better soon. HUGS my love!!!!

Shmuel-I'll be calling you tonight:)

Peace and healing to you all,

Judy

Judy.

Hugs to you and hope you feel better soon. We've missed you!!

Janie

just a quick update:

I got here and was really sick with pressures in the 80's and pulse in the 130's. They gve me a liter bolus and am now o my foith bag and have only peed once. I am so nauseated, but finally after sleeping from 2-12 feel asl though I can take a sip of water. I am on reglan, zofran, compazine, and dilaudid.

I think not having a colon we can get sick so quick. Just an update. Love you all. Have not had time to read others.

Lizzie

Kristina,

in fact, if you were told your small bowel is slow , too then you definitely suffer from small bowel dysmotility. Did they say anything about dilated bowel loops?
If this progresses to the degree that you have signs of chronic subocclusion or periods of (sub)occlusions you develop CIP which fulfil the definition criteria.
Furthermore, CIP is usually a progressive disease. It starts somewhere in your digestive tract and spreads onto other parts.
This usually may take some time but sometimes/sometime you exprience a rapid deterioration.

However, CIP means parlayed digestive tract by slow motility itself (=functional), not by decreased motility due to adhesions or due to narrow bowel lumen (like many people with Chron's have subsequently to the inflammation process) that both cause mechanic obstructions.

Most people with CI (CI sorry, not CIP) have an elongated, loopy colon but only few people with CI have dilated colons. I think these people are more prone to develop small bowel dysmotility, maybe eventually CIP.
I think you mentioned your colon was very big when they did the emergency surgery.

But what about the others: Did/do you have a chronically dilated (very increased in diameter) colon with your CI?

Thanks for letting me know!

SArah

Post Edited (pelztier86) : 10/16/2009 1:07:34 PM (GMT-6)