HealingWell
Search Close Search
☰

TOTAL COLECTOMY PART 30 page 12

Support Forums
>
Ostomies
✚ New Topic locked
1 2 3 4 56 7 8 9 10 11
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/2/2010 6:23 PM (GMT 0)
lizzie,  Good grief girl sorry to hear you are having so much problems...my prayers go out to you...take care.  Usually infection cause feavers, and why the blood coming out the tube, is it because its irritated?  Hope you have a better day today then yesterday..

Leslie

Posted 4/2/2010 11:51 PM (GMT 0)
I saw my colorectal doctor today and he said I DO NOT HAVE ANISMUS! He said not one of the tests indicate any sign of anismus.

He is not positive what the problem is, but said it could very well be rectal intussusception! I have to have another defecogram next week and he will compare the old one with the new one and we will go from there. I really dread having to retake this embarrassing test. UGH But, remain hopeful that he can do some type of surgery that will fix this life altering problem.

He still says I can not have a total colectomy until the outlet problem is fixed.

All my angles on the defecogram were normal and with the rectal EMG test, the rectum relaxes when I bare down just like it is supposed to.

I am still miserable and not pooping enough to give myself relief. I will take senokot tonight to hopefully stimulate the colon to move the poop through.
Posted 4/3/2010 12:55 AM (GMT 0)
Hi everyone,

It's been a busy couple weeks, but I've been checking in without time to write. Tracy, I'm so sorry you're having so many problems. I'm really surprised your tests have been normal with all the problems you have getting poop out! I understand why your doctor is saying he won't do a colectomy until he figures it out though; it's a huge surgery to go through and still have problems. Does senokot work better for you than miralax? I know before my surgery miralax did nothing except liquid would come out a little at a time all day, and it was impossible to live like that. Senokot however usually worked, but it just got to the point that I had to take so much and it would take hours for it to work. I only took it every 4 - 5 days, and I had to plan the whole day.

My first defocogram before surgery was normal, the one I had after surgery showed delayed emptying....go figure. I'm still taking miralax and metamucil twice a day and for the most part things are ok....not great, but ok. It's ok day to day, but when I have to be somewhere early in the am (other than work, I finally got over my fear of pooping at work!!) or if I am going out for the evening, I really have to just stop eating for several hours. It's just nice to be able to go though, even if I still need help. It's sure not what I was hoping for, but I can live with it.

Lizzie,
I can't believe you're still having problems sweetie. What in the world????? I've been praying for you, and I just feel so horrible for you. You have an amazing attitude through it all; it can't be easy. Please hang in there, honey!

Lori,

I've been thinking about you so much, too. I hope you've been able to talk to Dr. Wexler and that you can be at peace with your decision if you decide to go ahead with the surgery with him. I haven't seen you posting lately, I'm sure you're just too confused and scared to write much now, but know that we're all pulling for you!

Leslie,

I'm confused. Is your small intestine connected to your rectum? Didn't you say you had a pouch? Just trying to figure out how you're put together!! LOL I'm glad you're doing well and that the surgery seems to be a success for you!

Marissa,

I saw on facebook a little while ago that you're feeling better! I'm so glad. So glad the pain is finally gone. I hope you continue to heal and feel well!!

Gilda,

So since surgery you've had alot of diarrhea? Your surgery was for colon inertia? Diarrhea was the thing I was expecting after surgery, but after the first couple months, I sure haven't had that problem, although now that I take miralax daily I do go often. If I took 3 lomotil I'd be backed up for 3 days though! I'm sorry you're having problems. Are you also still in pain and that's why you're taking pain meds? Or are they to slow things down?

Rosemary,

Do you have your land legs back yet? I know after a 7 day cruise, I still feel like I'm on the ship a day or so later. I can't imagine how it must feel after months!!!

I hope everyone has a happy Easter weekend,

Hugs,
Janie
Posted 4/3/2010 3:36 AM (GMT 0)
answers4me2

Hi, sorry to hear still having prob's.   They told me that too but it was not true at all.  Once they took the colon thigs worked ...they told me in my memometer test that my xternal and internal sphincter muscles in the rectum were so tight and could not relax....and they said that was the reason I could not poo...WRONG,  once the sitz markers test's showed no movement, my colon was not working and it put constant pressure on my rectal area...

So out with the colon and then come the poop .....  Just like normal people...  If I eat I can poop....  they try to talk you into  surgical or bio-feed back just to run up bills...  So found my own surgeon and he gave me my life back...

Leslie

Posted 4/3/2010 7:19 AM (GMT 0)
Hi Lizzie,

I hope that the doctors will soon be able to find ways to help you. Have you been able to gain any weight back since your last surgery? I hope they are keeping you pain free with all that you have to endure. It sounds like they are giving you a lot of pain meds. I had to take two 500 mg Vicodins tonight; this used to really make me feel kind of spacy but now my body is so used to it! I really have to take them to control diarrhea more so than pain; other medications don't work very well for me. Anyway, I don't remember your Dad at Ottawa. I graduated in 1970; when did he teach there? Of course it has been so long since I attended Ottawa that I don't remember that many of the teachers (and of course all the meds I have taken over the years have kind of damaged my memory). I kind of remember the really nice homes in the Heritage Hill area. I will let you know if I am going home (G.R.) this summer to see my parents. If I do we definitely should meet! I am going to keep praying that you will be doing much better by then.

Gilda
Posted 4/3/2010 2:56 PM (GMT 0)
Leslie, see, my problem is NOT tight internal or external spincters. The rectum relaxes like it is supposed to when I bare down to have a bm. I also had an EMG, and this test showed that I am using all the correct muscles when I push down to have a bm. With anismus, the numbers get higher when you push down to have a bm...not mine, the numbers stayed really low and this rules out anismus. This also pretty much rules out biofeedback seeing as my numbers are within normal ranges. I did have high resting pressures on the anal manometry, but, this does not indicate anismus either.

I am hoping the defecogram that I get next week will give the doctor more information and a surgical solution to my outlet problem. This is my biggest complaint because even with laxatives, I can't get the poop out, even if it is watery?? It takes hours of my day to poop a tiny amount.

Would the total colectomy cure the outlet problem? My doctor is worried that I may suffer from small bowel obstructions after the colectomy due to this outlet problem. Atleast now, I have a colon that can hold tons of poop!
Posted 4/3/2010 6:19 PM (GMT 0)
Woke up today to about three inches of snow. Good grief. I feel like spring is never going to come. The sun is shining though, so that is encouraging. So, I can finally say that I am pain free. I cant remember the last time that I went a day without severe pain. I almost do not know how to react. It feels great. I have a new lease on life!! I finally feel that God is listening to me and helping!! I just wish that everyone could feel well. Some of you have been going through so much for so long. You are all an inspiration to me. I love you all~~ We are all connected to each other and I think we will all be forever friends. OK.............I am such a mush! I am tearing up right now as I write this. I just cant express to you all how much you all mean to me. I just wish everyone could live without the constant worry of pain, swollen bellys, struggling to poo, its just such a terrible burden to live with. But, I am always here for all of you. Like flies on a toilet seat, I will always be here. Love you all
Posted 4/3/2010 11:20 PM (GMT 0)
answers4me.....I am SO sorry that you have to do the defecogram again. Hopefully though this will show your problem and you can be on your way to getting it fixed. I knew a girl that had intussussception and she loved herself again after the surgery. She said it wasn't really painful much either. If this is the case I hope they find it. I am glad you don't have anismus because sometimes biofeedback doesn't work and at least if you have the other there is a fix for it. When are you doing the defecography again?

Lizzie....I am so sorry that you are having so many problems. When do you find out about your blood work? Are the steriods helping?

I had my two tests yesterday....defecography and rectoanal manometry. They really weren't as bad as I worked them up to be. I should have listened to you guys. It was really nice that the nurse who did my manometry told me everything she found whether normal or not during the test. Good news is no Hirschsprungs like the doc. was worried about. My muscles work great when pushing which I was really greatful for as well. The problem I had was towards the bottom of my rectum I could not get good "sqeeze" pressures. This all changed after surgery so I am sure from nerve damage. The biggest concern though and maybe some of you "experienced" colon people might know what this means...She did a test where she filled the balloon and I had to tell her when I felt as though I couldn't hold my poop any more....I got to 90 pressure...then she inflated it really fast and asked me to tell her when to stop when it got too uncomfortable and I did and then I was supposed to tell her when the feeling of having to go left....it never did and my pressure here was 100. She said that wasn't good at all and that normal peoples pressures are 180 to 200. I was cramping really bad. Does anyone know what this means? Does that mean I have a tight muscle? What do they do for that if that is the case. Nothing was found out yet about the defecography. I wonder if this is a muscle and the muscle is so tight if thats why my poop doesn't come down. What do you guys think? I hate trying to analyze this all myself. Thanks for reading this. Ugh such a relief to have you guys!

Shannon
Posted 4/4/2010 3:19 AM (GMT 0)
Shannon, on my anal manometry, my resting pressures were high....when she filled the balloon up, the number was very high when I felt like I had the urge to go poop...my doctor said 75% higher than normal. I never experienced any cramping and never really felt like I had to go poop, just like I maybe had to fart. If I could do the test over again, I would clarify that I just felt like I had to fart....LOL So,my sensations were off! My doctor also thought I had hirsprungs disease and I was almost disappointed to find out that I did not because there is a surgery to cure it.

I did not eat today and took 4 senokot-s, and some miralax. I am hoping I can get cleaned out and feel better. I have not had much luck so far, but surely the laxatives will work tomorrow.
Posted 4/4/2010 3:58 AM (GMT 0)
answers4me2
  Well for me even if its watery before I could not get it out either..but this has changed everything for me.  I hope and pray they find a solution for you as well.  Pretty tired tonight as I went to my sons house all day and did Easter dinner, I took it easy but I did not lay down today so I am spent....Happy Easter to you...I hope you poop...bless you I know how you feel..

Leslie

Posted 4/4/2010 5:16 AM (GMT 0)
answers4me....my resting pressures were not high at all..They were all normal. What does you having the high pressures mean? I didn't feel like I had to fart. I was definately cramping and feeling like I was going to have diarhea any minute. It was really a neat test to mean that they could test all that. Do you have to do the manometry again?
Posted 4/4/2010 2:32 PM (GMT 0)
Hopingforanend, I am unsure what high resting pressures mean...I just know he said nothing indicates anismus. I would think your anal manometry test results were very good, that your sensations were there, and that you will probably do great with the total colectomy.

When you had the defecogram, did you empty all of the paste out of your rectum in 15 to 30 seconds? My doctor said we should be able to empty our rectums in 15 seconds???? If I could do that, my life would be awesome. I would not have to live on the toilet....

Still no luck pooping! I will take more senokot-s today with miralax and see what happens. I don't feel as bas as I have been since I did not eat yesterday. I want to eat today though because we are cooking Easter dinner....Oh, I hope I poop so I can eat.

It is going to be 85 degrees here today. YAY I am so happy we are having warm, sunny weather. I have been sitting outside in the sun the past week and I have felt less depressed!
Posted 4/4/2010 2:59 PM (GMT 0)
Tracy, that is such great news that what you have is NOT anismus but that thing you said!! that means there's still great chance for you to have a TC w/o needing a stoma. i'm just dacing a happy dance for you honey! and i pray the new defecogram verifies it!
Posted 4/4/2010 4:01 PM (GMT 0)
As my surgery date comes closer and closer i've been thinking more about it each day, and I came up with this question. Did you guys have a tube down your throat the first day or so in the hospital. My mom is a nurse and thinks that they will have a tube with suction making sure no bacteria grows, is this true?


smurf Hope everyone is feeling better!!!!! Oh and ofcourse, Happy easter

Posted 4/4/2010 5:25 PM (GMT 0)
HopingForAnEnd
The only test they repeated for me was the sitz marker test...

Leslie

Posted 4/4/2010 10:01 PM (GMT 0)
Jacoby,

Some doctors use the ng tube and some don't. BUT, I know it is better to get it placed while you are asleep because if you suffer an illeus after surgery, they will put the tube down your throat while you are awake. YIKES I am terrified of that happening to me.
Posted 4/4/2010 10:42 PM (GMT 0)
Just an update! I could only eat a little of our Easter feast meal. I am so upset. I have pooped a little, maybe a teaspoon's worth, but not enough to give me any relief. I just took 4 more senokot-s and 4 doses of mirlalax. What else can I take to make me go and not make me feel worse than I already do? Any ideas, anyone?
Posted 4/5/2010 1:18 AM (GMT 0)
I am so sorry you are having such a hard time going. When I couldnt go I would take X Lax, but it is so miserable to your tummy. A lot of cramping. Any relief yet with the senokot and miralax? Have you tried a fleet enema? That is my only other idea. After a TC you can drink grape or apple juice to help go but that never worked for me pre op.

I did not have an NG tube and I would almost recommend it. Because I vomitted for four days straight after surgery. Very painful. I have heard that when you have the NG tube that is prevented.
Posted 4/5/2010 1:24 AM (GMT 0)
No luck yet. I am going to break down and go buy some magnesium citrate. YUCK I hate drinking that stuff.
Posted 4/5/2010 2:16 AM (GMT 0)
tracy,

sounds like you need the gallon of colyte bowel prep. mix well in a gallon of water. let chill. then 8 oz glass every 10 minutes. Walk quickly around your neighborhood in between glasses to avoid nausea. The poop will turn to liquid, colon contractions will then follow, and poop will fly out of you. Once it starts then the bloat goes away and then you basically have diarrhea. This will work no matter what your issues are medically. The only time not to do this is if you have ileus or a small bowel obstruction. Which you do not have. Do not eat while doing this routine and do not have anything except clears prior to doing it. Like do this shortly after getting up in the a.m. and have nothing but clears before doing it. You will be exhausted at the end, but this will work for you.

Good luck. Sorry you were not comfortable for Easter. Rosemary
Posted 4/5/2010 2:35 PM (GMT 0)
Rosemary, I called the radiology department and they said they don't have another copy of the test. So, I can't give it to my doctor to compare any changes. I am so upset.

The magnesium citrate has started working. I have had movement this morning. THANK GOD! Now maybe I can eat today.
Posted 4/5/2010 2:46 PM (GMT 0)
Hi Tracy,

Sorry I had to run. I logged onto my email from friends house, first stop on my errands, and got the link to your post from my email.

Next step is to call the hospital records office if the radiology office does not have the test. The main records office has everything, it may be in archives by now.

THEY can then contact the radiology office to go into their archives. NO TEST ever just disappears. I learned that the archive thing happens sometimes within only 6 months or so. Try this and see if it works. They have the actual images of the test in the computer and can easily burn another copy onto a CD for you to take to your current doc.

Good luck. Rosemary
Posted 4/5/2010 7:53 PM (GMT 0)
Just checking in....

Rosemary, the steroids are helpinh, but they are making me very "skin crawly" and emotional. I have told my husband he deserves so much better than me and I feel I have just ruined the last two tears of his life, but of course he loves me and consoled me and is here for me. I am having a hard time right now as my tube they had in place fell out yesterday....the tube is smaller than my stoma so leeping it in I had stool leaking and it ate through the device and I had burns on my skin. I have been able to get it in with some resistance, but spoke to CC this am and they are going to see me as something is wring...whether it be my valve, inflammation issie or pouchitis (fever). I have my pain appt wed after noon and then CC in the am on Thursday. I pray for you and your case everyday. I miss talking to all of you so much. I am in a place right now where I just do not want to burden anyone and I should not be having issues and I am and I feel horrible complaining.

I am praying for all of you thhat are still having issues and wish I could take away all your pain. Marisa I am so happy you are doing well and I hope this can help you expand your diet beyond just fruitloops :) and build some strength. I love you honey from the bottom of my heart. Tracy- Always here for you sweetie...I am so concerned becuase something is terribly wrong with that rectum and they need to figure it out. I hope this weeks test shows more than the last one as I think things have gotten worse.

To the rest of yo, please know even if I do not write something specific you are all in my prayers and I hope all of you continue to do well Gilda...1970....he was born in 49, but is the baby of his family he had sisters kay, vivki, and brother bobby shalhoup that all went to Ottawaw too. I would love to meet up with you this summer. I have lost weight. I think I have gained. I was down in the  low 90's.  but think I am up to the higher 90's. All I know is after 1.5 L of saline and swelling everywhere I was 104 so I know that I am much less (at least 5 lbs than that from all the fluid). I am trying my best to eat protein slushes and pudding my husband makes me, but that about all I eat and some cherrios here and there and popsicles.....boring, but until I know whats going On I do not want to risk anything as they said my CT showed major dilation, inflammation, and almost appeared obstructed. I am just hoping i make it to thursday. Love to you all.....any of you can text me as I always have my phone. My number is 616-446-4914 (not sure if i was supposed to do that.....love you).

Lizzie

Posted 4/5/2010 8:48 PM (GMT 0)
Lizzie,

Know that we NEVER view your posts as complaining! We WANT to hear from you no matter what is going on.

With all your heart and sole, grab ahold of that unconditional love your husband has for you and let it give you wings to rise above all the bad stuff that is happening to you. Many of us (like me) are never blessed with the love of a good man. Soak it in for all it's worth.

Do go very cautiously with intake as with dilated loops on your CT scan; this is not a good sign; means a partial obstruction which makes the loop after it dilate.

Glad CC is seeing you Thursday. Only 3 more days. Something is going very wrong and it is NOT your fault. Tracy's doc told her that 60% of these internal pouches give severe problems and that he would not even consider doing one on her and she is not in bad shape like you were when you went into the pouch surgery.

You may simply need an external ileostomy to save your life. At this point, do what will work to save you. You will always be the same person whether you have a baggie hanging on your stomach or not. As long as the thing works, what difference does it make? It's the real you that is important.

With a correctly made stoma, the outer part is a piece of cake to care for.

Personally I am still trying to wrap my head around what to eat. I just had a tuna sandwich and potato chips and lemonade. Man was that GOOOOD! However, now the effluent is so thick I'm drinking grape juice to thin it down and move it out. When my ileo was new food just whaled through me and that was that. Now that I've "adapted" and my small realizes my colon is no longer in the loop, things have slowed down and I don't think it's as convenient. BUT, as long as my inner workings stay OK, I really honestly don't care what the arrangement is. It sounds like you may be approaching that point in order to survive.

I pray for you that CC will do for you what they need to do to help you live.

Prayers are with you. Hang in. You have come this far and tried so much. You are coming down the home stretch to some sort of conclusion where you can live and move on with your life.

Love you, Mother Hen (Rosemary)
Posted 4/6/2010 3:41 AM (GMT 0)
Everyone without a colon or without the use of it,

Well, I found out another thing NOT to do. Don't drink two quarts of Propel Calcium vitamin enhanced water. The sucrose and sucralose create severe ileostomy diarrhea. I must have output well over a quart of effluent. This I drank on top of grape juice because I was worried that the tuna and cheese sandwich I ate for lunch was too thick coming out. I WAYYYY over-did. Got bad cramps. It seems to be slowing now thankfully. They say it is a learning process and that is sooooo true. All things in moderation I guess is the key. Wish me luck tonight. I am soooo dehydrated I gotta go to sleep. New start tomorrow. Hope I do OK. Am a bit scared. Rosemary

P.S. I remember no doctor I went to about the incomplete rectal emptying mentioned anything about sucrose and sucralose (Splenda sweetner having a diarrhea affect PRIOR to my having that disaster 2006 surgery for the sigmoidocele that turned out not to be. That would have been such a simple suggestion. Drink Propel calcium water, that would be all I would have had to do. Unreal, that docs don't often think of the simplest things.)
✚ New Topic locked
1234567891011