TOTAL COLECTOMY PART 28

oh.. it's a right side colectomy.. which doesn't apply to any of us.

Jen, it must be scary to have cramps at this point.. just make sure you call if you are at ALL concerned!

I'll catch up later - watching the video!

Rosemary, I did finish watching it.. interesting. Glad you were able to get a question in! I was wondering.. did you ever actually find out what your problem was? I know that you had issues with not emptying.. and then your nightmare of misdiagnose.. but obviously, you had some type of problem, and I wonder if you ever found out? The video was kinda scary - with the talk of anastomosis stricture, which I imagine is a risk we all take..? In your case, you'll never know if they did what they were suppose to do, but again.. you aren't a doctor, and you made the best decision at the time with the info that you had!

Oh, and on the video was two doctors, and they talked about bowel prep.. they disagreed with each other! One always did it and the other.. never! The one who never did it tells patients to eat a steak and potato dinner the night before! I'd be afraid to do that.. and I'll be doing clear liquids (as my doctor ordered) Tuesday.

Marisa,
What happens if you eat spaghetti or lasagna, etc? Do you get pain, or does it make you go too much or not enough? I feel so strange because I can honestly eat most anything and not have any pain. Fried oysters are the only thing that ever gave me any pain, but it wasn't too bad. The only problem I had with eating some things were that they completely stopped me up (pizza). Now that I'm taking miralax things seem to go through pretty well. I actually had spaghetti for dinner--in fact spaghetti was the first meal I had in the hospital when I could finally eat. I hope your diet will be able to change eventually. It would be terrible to not be able to eat without being in pain. Good luck on your surgery.

This time of year I'm REALLY happy to be living in Florida. It was 80 degrees here today. I had my grandbaby and we shopped all day! I have to admit of all the things I've done in my life, becoming a grandma has been the best (not that I actually DID anything to become one!!) I used to laugh at the bumper stickers that said "If I'd have known how much fun grandkids were, I'd have had them first". Now I get it. This little baby girl has totally stolen my heart!! She turned a year old on Thanksgiving. What a gift to be thankful for.

Lizzie,
I'm glad you're going back to CC. Hopefully they'll be able to explain all your results to you. It's great that when you're empty you have rectal control, but you can't stop eating just to feel good. I really hope you're able to feel better.

Janie

I questioned the bowel prep with my doctor 2 times, and clear liquids the night before is what he wants me to do, I'm not going to do a bowel prep on my own. After he told me this, I did google it and a ton of research has been done on this topic, although.. like the video - doctors do disagree on this topic. Some still do it - others don't. However, the research shows that chance of infection is no greater, and safe to do a colectomy without a bowel prep. It is more stress on the patient and all the electrolytes are out of whack. There are many, many online reports on the subject, and here is one of them: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1514315/ I know I asked before on here about the bowel prep thing.. and a few here said they didn't have one either. I don't want to start off as a disobedient patient, and my goodness.. I have already done 4 of these preps in the last 8 months.. so I very happy not to have to do it again!

Janie, I'm very happy to be living in FL! We moved here about 16 yrs ago, when our kids were still young, so we all live here (along with my parents and most of my siblings) We moved from the Adirondack Mountains.. so I can honestly say, I don't miss the bitter cold at all! It's good to hear you can eat just about anything! Enjoy that little grandbaby!

Marisa, sounds like your doctors are on top of things and looking for the reason you are still bleeding. Hope all goes smooth.. and stay warm!

Rosemary, yes.. they did go on and on about how important it was not to create tension. They did make it sound as getting a stricture is not all uncommon, but the same breath they talked about how important it is to address it. It amazes me your doctors did nothing! They had one question about a temp ostomy, and they mention it is rear that they end up doing one.. only if they are worried about something, and the one doctor mentioned something about a rectopexy.. so *IF* I do end up with one, I think it might be because they are worried about the mesh.. OR because they are doing a rectopexy and it might be a little taunt.

I hate I missed the video of the operation.  I bet that was interesting.  I had to do the prep...it was the miralax gatorade deal. My surgeon said it was safer in case anything were to happen.  Of course they are only human and accidents can happen and if anything was nicked or something happened its just safer to have an empty colon. Of course I have read where they all differ on this and there have been many operations where no prep was done and everything was just fine.  So Jenise I would just say that I'm sure its just fine not to have a prep especially if that's what your surgeon is used to doing.  I really think it is just a preference among surgeons.  Just like the NG tube...some put it in no matter what during surgery some like mine don't put one in...they wait to see if an ileus develops....they are all different.

I am feeling better this morning.  I am a bit weak and dehydrated from not eating and drinking good yesterday but I have no cramping like yesterday.  I think I'm just going to have good days and bad days but if the cramping does come back today I will call the doctor.

Jenise what was your date again....next week??  I am praying that everything goes well for you..just think positive! I really think once I heal this will all be worth it...even if I end up on miralax....better than popping 20 pills every few days and feeling terrible and blowed up all the time.

Jen

Rosemary - just an update.  I drank and drank and drank yesterday.  I had several drops of pee (which was an improvement) but I gained 8 pounds! GRRR! I woke up at 3am and decided to go on the scale b/c I felt super bloated.  I took a water pill and went back to bed. With in a hour I peed like crazy.  I lost all 8 pounds in 4 hours. Today I am drinking, drinking, and drinking and hoping my kidneys will kick in on their own.  My nephorologist is sending me a referral to get a ultrasound of my kidneys and bladder.  Then I follow up with him on Dec. 18th.  Thank you for the push to call him yesterday and let him know what is going on.

Take care,

Amey

hey everyone! Jen, SO glad you're o.k, i was getting worried. Lizzie, i had the exact same issue when i had biofeedback. i had 10 treatments. during 9 treatments my tone was average 20 and then in my 10th and last treatment (they all were at 9 p.m) in which that day i didn't eat (but i did drink about 1 1/2 litter of water), that day i felt most empty and didn't have the rectal pressure i usually used to have and amazingly my tone that day was 5-7. my pt didn't know why and how to explain it. i wonder what this means? i'm glad you're going to CC and i hope they can help you! Marisa, gosh im sorry you have to have surgery again. didnt quit understand what this procedure is, but i hope and pray all goes the best for you! Amey, not peeing dounds aweful. so sorry about that. Janie, glad you're enjoying your baby gradaughter so much :)  so i went to see that colorectal surgeon who's now an omeopath (sp) and nutritionist. it was a very long meeting of 1 1/2 hrs. he was extremely nice and seems like a very pleasant persom. he told me my condition is rare and that he's amazed that after having my whole colon removed i still get so badly constipated only by eating a small potato or a small amout of pasta/rice etc. he said that it could be my smalls are also slow, he said he's almost sure of that. he asked me what i eat and i told him about my short list of foods that don't cause me too much trouble and he said to stick to it for now. first step he asked me to do some blood work and pee checking, then he'll know what exactly to give me. he's plan is for me to take magnesiun, he says this should help relax my rectal muscles.... i say WOW!! if that only what it takes to finally KILL this dreadful anismus, that should be... don't know how to say it in english... an enormous revelation (if that's the right word) to all of the gastro field! anyways, also wants me to take vit D, enzimes with each meal (which i don't have many real ones a day) and fish oil (YUCK!) but it's gonna take about a week to just start, cause i need to do my blood work first and pee check. hope you're all doing well!

I would like to let you know about a new therapy for incomplete evacuation, constipation etc. It is called Sacral Nerve Stimulation.
http://www.medicalnewstoday.com/articles/71770.php, second abstract. It is supposed to be effective in evacuation problems and dysfunction of the pelvic muscles/nerves

http://en.wikipedia.org/wiki/Sacral_nerve_stimulation
http://www.ncbi.nlm.nih.gov/pubmed/18322757
http://www.colorep.it/Rivista%20CEC/sacral_nerve_modulation_for_chro.htm
http://findarticles.com/p/articles/mi_m0CYD/is_20_36/ai_80744183/
http://www.pelviperineology.org/pelvis/severe_constipation_colonic_manometry_sacral_nerve_stimulation.html

maybe an opion for you who still suffer from constipation after colectomy that could be linked to pelvic floor/rectal/outlet problems.

Sarah

Post Edited (pelztier86) : 12/3/2009 4:12:50 PM (GMT-7)

Janie, If I eat those foods I have really bad cramps. And I also can not go to the bathroom and can get backed up for days. I just have not tried to eat them again. I am too scared. If I know that something has not caused cramping then I stick to those foods. Just safer for me. But, I think its great that you can eat them, cuz I sure do miss real food.

Hodaya, the surgeon is basically trying to find where my bleeding is coming from. He is still concerned that I have Crohns. So he is doing the colonoscopy to get up five to six feet into the small intestine. And then an endoscopy to look at the begining of the small intestine. He also believes that I may have a stitch coming through the anastomosis site, adhesions, or a tear that could also be causing the bleeding. So he just wants to check it all out and make any repairs if they are needed while I am there so I dont have to go back a second time.

Jen, are your days getting any easier? Hows the weight coming along? You know what helped me was banana cream pudding. I loved it!! And it went through so easy. I ate ramen noodles a lot too. I hope you can find things you can tolerate and give you calories.

So, is everyone ready for Christmas? I am slowly getting there. Still no tree up yet. I feel like a big old scrooge! I hate Christmas music and dont put my tree up until two weeks before Christmas and it is usually down the day after. Eight hours of Christmas music is just too much at work. I cant stand it!! And then its playing in every store you go in. Maybe it would not be so bad if they didnt start playing it before Thanksgiving. Or I could just be a bah hum bug!!! Who knows?

Janie, I am soooooo jealous of you and your 80 degree weather. That sound so great right now. It only got up to about 5 above zero today. I dont know if I can survive this cold.

Hi Lizzie,

If the Cleveland Clinic thought you were ready to be rehooked and it sounds like you are not/really were not, then I really believe this pelvic floor rectal pressure business defies even the BEST docs who are really trying to do their best for patients like you. CC is one of the best gut centers in the world. Wish I'd heard of them prior to 2006.

I'm back to feeling lightheaded, the good effects of the IV wore off fast, BUT, if after all I've been through lightheadedness is all I have to put up with, then I will count my blessings!

As you know I am completely and permanently diverted with an ileostomy. Believe it or not I feel GREAT rectal pressure every time I eat. For awhile mucous does accumumlate in the defunctionalized colon and rectum and does need to pass out of the rectum. As my rectum is wrecked, mucous cannot pass, so I have to have my current surgeon suck it out every so often with a sig scope. It's not too bad and only takes about 5 minutes or less.


However, lately when I've gone for suctionings there is NOTHING there, no mucous whatsoever. He says that the mucous either gets reabsorbed, what I feel if just a tiny piece of mucous which can feel like a ton, OR it could be old nerve ending brain-gut connection left over. Eating normally triggers bowel action, as I am diverted above the colon/rectum, it makes sense that old colon/rectum nerve impulses are still triggered by eating. So even I have this rectal pressure after I eat and I'm not even using my colon/rectum.

2008-2009 I did manage to figure all this stuff out and that I did not need the original surgery in 2006 except for repair of rectocele (according to one radiology reviewer that is.) BUT it took me two years of practically full time study to figure all this out. I SHOULD have just taken two years off from my job and educated myself in 2006, sent scans around, found out about other tests. Had I not gone to 3 colorectal/GYN consults at major medical centers, I would likely have dug into this a whole lot more. BUT with opinions from 3 major med centers, I trusted, and that's where things went awry. But no going back. Glad I can share with all you and hope my info helps.

If you end up having to go back to the ileostomy and can afford the travel, Lahey clinic in Burlington, MASS makes great ileostomy stoma's. So far that is the one thing that has worked for me (barring regrowth of adhesions on the inside), but they even used Seprafilm adhesion barrier to try and prevent that so I may just stay OK as I have been since their procedure. With a correctly made stoma, you would not suffer the retraction and skin issues you suffered with your prior ileo. So take heart. I'm heading off on my 6th major cruise in Jan (assuming all stays well), I just bring a suitcase of supplies and go to town with it. Permanent ileos are do-able if stoma construction is done correctly.

Good luck at CC. We are having 60 degree weather in the northeast. IT's fabulous. OUr climates sure vary don't they? Good LUck, Rosemary

Hi Jenise,

Nothing at all was bulging out of me. TVL total vaginal length was 7 cm. POP-Q measures (pelvic organ prolapse quantification scores) showed only a 2 cm posterior prolapse in the back of the vagina with no external prolapse. This would have been the internal rectocele. No apical prolapse (That means no prolapse of the top of the vagina. IN spite of having had a hysterectomy the top of my vagina was not falling so did not need to be hooked to my sacrum as it was already well suspended.) I had no anterior prolapse (that means no bladder prolapse.) So resuspending the top of my vagina has made my vaginal vault extremely high and narrow. One GYN told me after surgery I look like a 15 year old inside and that sex would likely be very uncomfortable. As mentioned before, the over correction of the bladder that was not falling in the first place, makes it hard to empty.

As I did not consent to all these procedures, nor were they even mentioned as a possibility prior to surgery, I did not even know these original surgeons had all this on their "agenda." I only learned all this had been done when I got my op report. They did not disclose to me they did all this stuff. No mesh was used. Their other suits are for loss of bodily function and deaths related to post-op complications which they ignore. Ironically, these other patients all had the same procedures done on them.. Plus these were all done on the woman I met in the hospital that had surgery by these same two surgeons the same day I did. It's like a template surgery they do on everyone, needed or not with all these multi-procedures they get paid for by the procedure. This is why I'm suing (and then am going to try to expose them. IF my settlement doesn't come with a "gag order" that is.) It's nothing they figure out scientifically.

I think the reason they disposed of my original defecogram was that it did not show all these prolapses beyond showing no sigmoidocele. So what's in my file at their office indicates only the need for removal of a right ovary due to a large benign cyst.

VERY SCARY. If you are researching that much and know of POP-Q measures that indicate need for prolapse surgery vs those measures that don't need surgery. I would be willing to look mine up and share them. Needless to say prior to dealing with these "butchers" I knew nothing of POP-Q measures or what mine were, or that mine were just fine except for the rectocele. Ironically no doc could actually feel the rectocele by a digital rectal exam, but it is on the defeocgram scan. That is another reason why I never suspected all I had was the rectocele.

Rosemary