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TOTAL COLECTOMY PART 35 THREAD 13

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Posted 6/26/2010 10:26 PM (GMT 0)
Hi Allie,

Please relay to Lizzie that nothing I've said was in judgement. Heavens, I sure hope it did not come across that way. Fully realize that she, as the rest of us, have made decisions based on the information we were given in hopes of a better quality of life or to correct a complication. All we want is for her to get better. I would be the LAST one to judge anyone what with my surgical history! So glad you told us how she was feeling and thank you so much for putting this out there for us. I think in our zeal to "make her well" perhaps a few of us were trying to figure things out to the best of our abilities based on our experiences and knowledge as patients. My guess is that is what has happened. Assure her we are all well intentioned and many of us are in the same boat. I for one will just send prayers from now on. If anything I said made her feel bad, please assure her it was not meant that way. I sincerely apologize if this was the case.

Rosemary
Posted 6/26/2010 10:30 PM (GMT 0)
By the way, GREAT news from Tracy. She started passing gas from her stoma and is feeling somewhat better. Voice sounded lots stronger on the phone. Still heavy output and needing IV's but passing gas is a major step forward. :-) Yeah Tracy!

Rosemary
Posted 6/26/2010 11:02 PM (GMT 0)
Hodaya, I am filling bag after bag of fluid...absolutely no chance of constipation. It is amazing. Now my electrolytes are off because of TOO MUCH output ....feeling a bit better today and expect to go home sometime next week. I am still on clear liquids due to sluggish intestines, sounds not heard on both sides of abdomen???? But, my stoma started farting today. WHAT? I mean, like a loud, wet fart. I heard others talk about the noises, but geez, I had no idea it was that loud....LOL HAHAHA I think this must be a good sign that things are waking up. Thanks for all of your prayers.

I will have to give ya'll the run down of my surgery as soon as I am able. I can't read for too long, must be the pain medication.....Tracy

Love you Lizzie!
Posted 6/27/2010 12:50 AM (GMT 0)
Allie,

I did not mean to judge Lizzie for her decision she has made based on the information she was given at that time. I feel she would have been better with an ileostomy right after the surgery but nobody could tell if her complications now are just temporary an managable or a long-term problem. I just wanted to share my results of my own research. If think that most docs do not inform their patients properly before undergoing surgery: while they do tell you the acute complications directly resulting from surgical intervention they fail to tell you the possible FUNCTIONAL problems which can be only temporary but also long-term. I hope you text her about the acidosis issue anyway. It is just an idea but I think it is worth to follow since there are no other explanations for her issues at the moment and most surgeons just forget the functional aspects of their interventions just BECAUSE they are surgerons..it is not intention, it just happens since they do not tend to follow-up their patients. Most times, the patients manage the functional problems by their own since they are not drastic but Lizzie may have them "just" a little bit more severely.
Posted 6/27/2010 1:15 AM (GMT 0)
Hi Allie,

If you can, and you sense the time is right with Lizzie, could you just ask her to ask her Gastroenterology doc if he thinks she has this acidosis issue Peltz is talking about? Peltz is a wealth of info (obtained the hard way). Peltz is correct about surgeons not always telling patients of (or maybe not even knowing of) functional issues result of surgical procedures. As she said, functional issues are not surgeons' specialty. Maybe Lizzie could just run this past her GI. He would be the one that specializes in the functional issues of this pouch. It wouldn't hurt to ask the question. Rosemary
Posted 6/27/2010 3:44 AM (GMT 0)
Allie, pls let Lizzie know that i'm first of all TRULY SORRY if anything i've said offended her in any way, i love her too dearly and would NEVER do or say anything to upset her. i never had any intention to judge her.... GOSH, i know all she's been through and KNOW all her dicisions were based on thorough research, NOTHING of it was taken lightly and i've always and will always appreciate her knowlege, experience, good logic along with her wonderful abbility to be an amazing friend, supporter and the loving beautiful person that she is.... gosh, non of what we've said was meant to judge HER, if it was so, you think we would have written that right out in the open like that? seriously, we all just truly trying to simply think together, BUT..... i guess it's NOT our job to do that, and i'm deaply sorry if that was not in place, that SURE wasn't our intention in any way. this was taken deaply into my heart, cuz i care and would hate a long friendship to be disturbed like this, esp if the intention was not the way it unfortunately appeared. Lizzie, just know that i have and will ALWAYS praying for you my love, i guess that's all i can/should do for now.
Posted 6/27/2010 3:52 AM (GMT 0)
Tracy, thats' such GREAT news hon!! WOW.... does it make noises when gas pass..?? i thought it doesn't... i hope this calms down tho.. LOL you sound great :) :) :) i hope you're able to go home soon.... hang in there, much love to you hon!!!! OMG... i'm next!!!!!!
Posted 6/27/2010 3:57 AM (GMT 0)
Hodaya,

I think you are absolutely right. We were all trying so hard to pool our knowledge to help come up with a solution for Lizzie because we care so much for her. We did so with good intent, though unfortunately it evidently came across to her as judgement.

Thanks soooo much Allie for telling us how Lizzie was viewing all our "brainstorming". Otherwise we never would have known we unintentionally hurt her feelings.

We all love you Lizzie and just want to see you well. Praying for you.

Rosemary
Posted 6/27/2010 4:09 AM (GMT 0)
Hodaya and Tracy,

Yes at first the gas passing from the stoma is quite loud. As the body gets used to being without a colon things calm down. Hodaya, you are already without your colon, but I am sure that your ileostomy stoma will quiet over time also. BUT remember that sounds are a POSITIVE thing. :-) It means that you are coming out of ileus and that your guts are working. This is our goal :-)

I'm going on year 3 now and mine barely ever makes a loud noise unless I am extremely hungry then I eat. The air that was in the intestine then gets suddenly pushed along with food. So that is a good thing, but that is when noise is apt to happen. So once you are well on the mend and are able to eat (awhile off for Tracy yet), they advise you to eat multiple small meals per day rather than three big ones. That way the gas of being empty does not build up so much.

The reason Tracy's stoma is making so much noise now is that she has not eaten since what Saturday or Sunday and it's now the following Saturday. Plus with her intestines just waking up, she has a lot of gas in her that is GOOD to be rid of.

So just wanted to assure you "newbie" ileostomates that sounds won't always be that loud. Rosemary
Posted 6/27/2010 5:31 PM (GMT 0)
Hi All,

Tracy posted a great diary of her surgery under the title my surgery experience, my new stoma. Lots of valuable info. She is doing soooo much better. Still in progress but getting better. Rosemary
Posted 6/27/2010 6:34 PM (GMT 0)
I am still in the hospital and keep forgetting to ask my doctor about this. My teeth feel "fuzzy" and gross, no matter how many times I brush them and my tongue is coated white. No pain, just the annoying fuzzy teeth. Is this thrush or has anyone ever had this?
Posted 6/28/2010 2:25 AM (GMT 0)
Hey Tracy,

The "fuzzy" teeth are new to me. :-) Could be the beginning of thrush from the antibiotics????? Just a guess. Hope you keep coming along and they get a handle on the dumping. My guess is your body will adjust itself. Easy does it with anything you eat. Best wishes. Rosemary
Posted 6/28/2010 4:39 AM (GMT 0)

Hey Tracy, So happy to hear you are doing well!  Praying that your healing will continue to progress and that you willsoon be home:)

Will be out of town for a couple of days having some tests done (what a way to spend yet another b-day) but looking forward to next saturday when I leave for a month to visit my daughter at the beach!!!!:)

Will talk soon.

Peace, prayers and love to all,

Judy

Posted 6/28/2010 3:34 PM (GMT 0)
Hi all.. finally home from vacation, we had a nightmare on our leg home. (0 miles from home, rock cracked our windsheild, and we blew a front tire. Took hours to get a roadside repair.. finally made it to the RV place at 12:30 Am.. they put us in a lot with a bend tree.. that our roof hit! Guy came to help in his golf cart and he hit another customers car! We were stuck for 24 hours more.. just exhausted by the time we got home and I just really started feeling "normal" yesterday! (Janie - I should mention - this all happened on MY birthday!! not a fun way to spend a b-day)

So good to hear from Tracy!! Tracy, I was on that same medication for a week, but my bowels never woke up until day 6. That dry, cotton tongue.. I had it too.. I think it has something to do with anesthesia or did they give you that patch for anti nausea? I always improved after I take the patch off.
Posted 6/28/2010 3:46 PM (GMT 0)
WHOA Jenise, sorry to hear about your birthday. What a nightmare. Rosemary
Posted 6/29/2010 3:35 AM (GMT 0)
Hello everyone. I'm wriring from my tiny blackberry phone screen, so I haven't been able to read all the previous posts and will not be able to write much tonight.
So I had the surgery. It went very well. I even got a picture of my weak intestines.!!! Yikes. I was able to walk the first night.
Tonight doing ok. Had surgery on thurs, and I Haven't passed gas yet so still only on liquid foods and now I'm just nauseas. I don't feel like putting anything down. Tummy distended. May have to hv NG tube again if I throw up. Scared of that.
What r ur experiences with passing gas? Since its takin a bit does thismean the surgery didn't work, or I may still have constipation issues.
I have not experienced any bowel movemenets. Tummy is very tender. Abdomen muscles hurt bad when I go to pee, but they r getting stronger each day.

Pray that I pass gas please!
Posted 6/29/2010 3:45 AM (GMT 0)
Barb,

You are likely in ileus (temporary shut down of guts post-surgery....extremely common). I had the NG tube put in awake as I was severely distended with no output after my ileo surgery but it was worth it as I felt soooo much better with it in. So if you need it you will feel better with it. This is only a post-surgical issue. Your intestines need a lot more time to wake up. Go real easy even with liquid intake. Maybe just suck on some ice cubes. Good luck, Rosemary

P.S. Tracy dealing with some similar issues, then too much output, so real common to not normalize so soon after surgery.
Posted 6/29/2010 4:17 AM (GMT 0)
Barb, you've made it!! don't worry, it takes time for the guts to wake up, it took me a little more than a week till i started passing gas - i had an ileus. but this definitely doesn't mean the surgery didn't work, it's all very normal post op. the ng is yuck, i know, but it will help you with the vomiting. i couldn't put anything in my mouth, including liquids for the first 8 days, it'll get better i promiss. keep walking....
Posted 6/29/2010 4:45 AM (GMT 0)
Barb,

Yes, I forgot to mention the walking. very important to wake up the guts. It really works. Remember with your "great rectum" :-) from that defecogram, I am betting you will get a fabulous result. (As I remember you had small intestine hooked to the rectum.) Rosemary
Posted 6/29/2010 9:07 AM (GMT 0)
Tonight hasn't been fun. Had another blockage. Dunno what caused it, cause I ate all the normal foods that I've been eating. and about 8pm I noticed I started having some stomach cramps and the output stopped.
It wasn't until about an hour ago when output started again. I vomited three times and did all the "unblock methods"
Thought I was going have to go back to the ER until I tried a heat packet and took a lorcet. Couple of minutes later it felt like someone stabbed me with a red hot knife. At first I thought the intestine may have ruptured, but the pain pretty much went away.
I'm still having some minor cramps but it is nowhere near as bad as it was earlier.
So yea it is 5AM here and I'm not sleepy at all despite taking melatonin to try and help me sleep which just made me groggy and in pain. Had to get my fiancee to run out to the 24/4 CVS to get my Lorcet refilled and I took one of those and I'm still wide awake lol.
Posted 6/29/2010 10:09 AM (GMT 0)
Thanks all 3am here. I get about 2-4 hours of sleep at a time and wake up. Doesn't bother me too much, its the routine right now that my body is workin on.
I have been walking a lot, but I am going to try and do much more - this is what my surgeon suggests as well.

I do have feeling in my belly and butt, gasey noises and motion. No passing of the gas though. This is normal??
I can tell when it happens its probably going to be somewhat painful, but I'm ready when my body's ready to move to the next step in all this.
One of the nurses suggested a little clear carbonated soda, like sprite or 7-up? What do u ladies think?
Posted 6/29/2010 10:41 AM (GMT 0)
Barb, sounds in your abdomen is a good thing. The gas should come along shortly. Walk your butt off, as much as you can. That helped my intestines so much. How is your pain level? This is a huge surgery, so try to be patient....

Newshinycd, I am up at the oddest times also. I just came home yesterday and am totally off schedule. I wonder why you had another blockage? UGH, that is my fear. My stuff is still totally liquid, kind-of looks like coca-cola.....is yours thicker now? Just try to eat softer foods and maybe increase your liquid intake.

I am okay, but still very sore and a little depressed tonight. I went to sleep at 10pm, woke up at 1am to empty my bag, ate some pretzels, drank some gatorade, then back to sleep at 2am and back up at 4 am to empty bag and eat some more pretzels. I also took pain medicine and am still awake at 6:40am. The doctor told me to try and eat something with every drink until the output slows down....but it still has taken less time to empty the bag than what i was going through, pre-surgery. :)
Posted 6/29/2010 12:46 PM (GMT 0)
I think I just tooted!!!!!!!!!! Omg, this girl is happy. Whew, It is just ail after 530 now and I woke up feeling a lot of pressure so I just wanted to get to the bathroom. Took a seat, pushed and it was just one big 'blow' sound. Like when u get something stuck in your straw and u blow and whatever it was pops out the other end??!?!! Well black watery poo did *yuck*- just a lil but enough that it changed the color of the water. And it hurt for sure! It had to be the pressure.... So that is it!!


Traacey, hello!! And goodmorning!! I can't wait to go back and read all ur posts and others from the past wk that I have missed!! I hope ur surgery has gone well as can be expected!!
Posted 6/29/2010 2:41 PM (GMT 0)
I dunno why I had another blockage. I'm thinking it may have been some pasta I cooked or pizza. I'm thinking it was the pizza.
It also could have been the fact I've been eating a lot lately and I probably just ate too much at once.
Posted 6/29/2010 4:03 PM (GMT 0)
Tracy,

Besides avoiding sugar and fake sugar for the dumping, I was told to drink between eating not while eating to calm the dumping. The eating and drinking at same time comes wayyyyy later. Try baby banana 2 tsp to slow the flow. If you take immodium, try 1/4 chewable as we discussed. A half one stops my gut dead in its tracks (have to use those if I overdo sugar or fake sugar and output bags of clear yellow.)

Shiny, What is Lorcet? SOmething to break up a blockage? All I know of is grape juice and hot tea and LOTS of walking IF not nauseaus that is. BUt you were vomiting. If you ever need an ileostomy lavage to remove a food blockage at an ER be sure someone trained in it does it. It is way different from a colon stoma irrigation. If I were you, I would have a CT Enterography image test. You need to know if you have a kink or a stricture behind the stoma. 3 blockages in a short time isn't good. Ask your doc. I have had 3 food blockages all I cleared on my own but were not fun (over 3 years). 2 were on mashed potato and one on high fat cottage cheese and potato chips. I have to eat extremely bland even though my CT enterography showed all was open and hunky dory. Pasta, pizza, mashed potato all have a high starch content. Though we are all different, I really think these dense foods may cause issues in SOME of us. OTher ileostomates can and do eat "anything they want" and they are lucky. THe rest of us have to modify, modify, modify. Best wishes.

Barb, Yeah I think you're on your way! Rosemary
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