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TOTAL COLECTOMY PART 32

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Posted 3/9/2010 1:59 AM (GMT 0)
For those who have continuing problems (hopefully less severe!) is it mostly those with pelvic floor dysmotility?

And is there a 'conservative' step between keeping the colon, and removing it ALL? The biggest abnormality in my colon is the very, very long sigmoid section. Has anyone done a 'partial', then later had to have a total colectomy?

Back when things were looking like I had internal hernias, which could be repaired via lap, I was considering a partial hysterectomy at the same time. I'm not using it, I don't need it, and don't want to deal later with adhesions and scarring. Now, I don't think that's going to be an option.

Thank you ALL for the welcomes. I'll be checking in here often and will get to know many of you.
Posted 3/9/2010 2:50 AM (GMT 0)
Lori,
I've been waiting to hear from you! I know this is a huge surgery, but you're in great hands. Before my surgery I asked my surgeon what the worse thing that could happen would be and he said "you could die". I think that's just one of the things they have to warn you about. There is always that possibilty, but we're all going to think positively and soon you'll have your life back. I know it's only natural to be scared, and I would too, but please try not to drive yourself nuts worrying. Keep talking to us here about how you're feeling; we'll all be here for you:)

Rottiemom,

My colon was over 8 feet long and very twisted. My doctor wouldn't consider leaving any of the colon, he said statistics show that with CI, removing part wouldn't work. As it turns out, removing all of it didn't completely work for me either. For the first 3 months, I went about 10-20 times a day. I never minded going so much, it was the first time in my life I wasn't stopped up! Then around month 4 things slowed down so much, and eventually in October I started taking miralax. It's made a big difference, but I still resort to enemas and prune juice fairy regularly. It's pretty discouraging but still much better than I was before surgery. I definitely have pelvic floor dysfunction, which is my biggest problem now. I still don't understand why the first few months were so good though. My surgeon is pretty surprised, too.

Hodaya,

I'm so sorry about your doctor visit. My doctor pretty much said the same thing to me when I was having so much rectal pain. He didn't even recommend miralax; he just said all he could offer me was a stoma! I said what about if I try miralax and he said "that's a good idea". I think he just didn't want to deal with any problems. I still need to go back to get the results of my last mamometry (sp?) but I keep putting it off because I'm trying to figure out what to tell him about how I'm doing. Some days the miralax works really well, other days not so well. I'm sure alot has to do with my diet, but I try to copy the foods I eat on a good day, but it doesn't always work that way. I'm still not eating much during the day, and after my evening miralax I sometimes go alot of times, and sometimes just get bloated and have that horrible rectal pain until I use an enema. It's just so discouraging, as you know. good luck sweetie!

Peltzier,

I've read your previous posts, but I guess I really didn't understand completely how difficult things are for you. I'm so sorry, and it just makes me sick that a doctor can have so much power. If you don't mind me asking, how old are you? Maybe you've said before, but I don't remember seeing it. I pray you'll find someone to help you.

Gotta run for now, but would love to talk to you all. I truly wish we could all get together for a reunion one of these days.

Hugs,
Janie

Post Edited (Janiepain) : 3/9/2010 5:54:03 AM (GMT-7)

Posted 3/9/2010 3:36 AM (GMT 0)
Having a very scared day....woke up anable to bend most of my joints. I have been only peeing once a day for about a week if I am lucky twicw. I can barely move today and I am not sure what is wrong. Hoping its just a virus, bit my mom said my dad acted the same wat when he had acetaminophen toxicity. I went to picl up scripts from dr tonight and nurse said oh liz, you look horrible and not any better. My joints in fingers are so swollen I cannot fit my wedding ring on....and I feel 90 yrs old when I try to move.

Anyways...Lori....Please try and remain calm and you ar ein such good hands. I was told the whole death thing as well, esp woth this last surgery and small gut syndrome as well....but he is going to make you all better and you have to believe that. Its just something they have to say....We are all here for you...mine was not 8 hrs, but very risky for my state of health as well and I understand your fear. I was not too scared until that day and recovery...its going to be long, just prepare yourself. I am staying off work until i fell 100% wether I have my old job or not. I have to get better and I am nowhere near doing anything right now. I can barely be out for a few hours without losing all color in skin and having so much pain. We are all here for you.

Peltz- I am SO sorry for you and I pray you can find the doctor who does not need/abuse his power. I pray for you and hope you can get this needed surgery.....glad you have started sharing more. we are here for you.

Hodaya- Worried.....pleas check in. love you.

Can barely type....

Lizzie

Posted 3/9/2010 3:05 PM (GMT 0)
Thank you all so much for your compassion and warm words!

Janie, I am 23 years old, I will turn 24 in August. Have had problems ever since birth/childhood that became really bad in adolscence but somehow I managed to go to school. With 19, after my second grade, I experienced a severe and rapid deterioration; ever sine then my life has not been normal at all, it is a mess. (although you couldn't consider my life before as normal, too), before my ileostomy it was hell on earth.

Since December 2007 (practically within one year) I have had three big bowel surgeries, the bladder surgery along with removing my rectal stump would be the fourth big surgery which could also last up to 10 hours. I have had numerous little interventions: placement of the hickman catheter, placement and changings of the nasal feeding tube I had 4 months and I have regular painful changings of the bladder catheter.
In the last 4 years I have been in the hospital 10 times - everything between several days (for subileus due to impaired motility, for diagnostic tests/investigations) and 2-4 weeks after bowel surgeries and 2 months (to try enteral tube feedings for weight gain, I was down to 78pounds) each time. In additon I regularly have outpatient appointments and I had numerous, countless appointments in the past. Ever since my first marled deterioration in adolscence I had been trying every med and therapy (non-conventional, too) under the sun with no success.

Life still revolves around my body and how to manage each day with the numerous problems I have. In addditon I have to deal with the pain and the overall situation and the arrogance and ignorance of the docs here.
Posted 3/9/2010 6:21 PM (GMT 0)
pelztier86
     Oh honey my heart just aches for you.  Your so young to have gone through so much and still having to deal with it.  You seem like a very positive person, is that how you have been getting through all this?   I pray for God to lay his hands on you and heal you from your affliction, and give you health and peace and happiness in your life.

You have tons of support here so always turn to your friends here because we will always listen to you and have compassion for you in any way that we can help.

I just feel so bad for you being so young and dealing with all that..

Leslienono

Posted 3/9/2010 6:44 PM (GMT 0)
Leslie,


thank you very much for your words. Indeed, I don't know how I have been through all this, I just had and have to! I mean noone ask you if you are ready and able to stand it, i guess it is like when people live in exceptional/extreme situations like in war times. You don't think, you just keep trying to go on, each day, without looking into the furure, neglecting the next day which may bring up further problems, just concentrating on the next second, the next minute, hour.

That doesn't mean you always succeed in coping with the situation, it is more a survival thing. it is not (at least always) an active/conscious decision, maybe more the human instinct for survival that is sometimes much challenged when all you want is to give up and have your peace in mind and body.

You can't help you have to hope.... even if you feel extremely despaired... somewhere, there is something in you that keeps a smallest amount of hope and makes you go on no matter what the current situation is like and what your body and mind tell you.
If this part dies, then the disease has won.

I won't lie... it is very hard, this way of living, but it is MY way of living, so I have no choice and try my best.
Posted 3/9/2010 6:56 PM (GMT 0)
pelztier86
No truer words have ever been spoken.  It is exactly that min by min and day by day.  Keep up your amazing faith, and courage.  You are a example to all of us....Have as good a day as you can have sweetie.  I know that this all started for you when you were very young, mine did not start till 1993 with my gallbladder surgery.  Everything kind of slowly started showing itself but I had no idea what was going on.  Every year got worse and the last 2 years or maybe 3 now that I started researching anything and everything trying to figure out what was wrong with me.

Then I started going to the doc's and many different ones and they just told me this was the way my life was going to be.  I did not accept that, so through all my research I figured out what was wrong with me all by myself.  Once I decided what needed to be done in my mind I went to a teaching hospital in Oregon where I live..OSHU and asked for some tests to be done.  Once they were done and just offered me bio-feed back to start with I said no and called a surgeon in my home town of Roseburg and went to see him.  I told him everything and he listened to me and I said what I thought was my problem, so he had me do another sitz marker test and he confirmed to me that I was absolutely 100% right.

So that is how I got the surgery I needed...So be your own advocate my dear, dont just accept what they are saying is the end all and be all..

Wishing you peace today  Leslieturn

Posted 3/9/2010 7:22 PM (GMT 0)
Leslie,

I have fought to get my ileostomy,belive me, my doc didn't want to do it first.
I have fought many fights, some which you shouldn't have to fight since they are so usless and only take your force without going a step forward: i speak about the fights against the ignorance and arrogance of the docs who keep telling you that you have an eating disorder, that it is your head etc and who don't accept my diagnosis even now.

If I hadn't fought and gone to Italy to the expert who finally diagnosed me I would have probably been starved to death which would have been explained by anorexia, of course.
I am incredibly grateful for this expert. I know if I should be ever in such a bad condition again then there is no other option for me than going to Italy again.
Posted 3/9/2010 8:30 PM (GMT 0)
I am so happy to hear that, ya they always think its something to just explain away...but no we are real people with real symptoms, not just in our head....best of luck to you..
Posted 3/9/2010 11:31 PM (GMT 0)
Hey everyone!

I have been reading these posts for the past two weeks and decided that its finally time to share my story and get help from people who are dealing with the same thing I am. My name is Amanda. My constipation issues started very suddenly. I am 20 years old and just started having severe constipation when I was 18. All of a sudden I couldnt go to the bathroom at all, and that lasted for about 3 weeks before my health service at my college told me it was time to go to the hospital. Long story short I ended up seeing a doctor at Rush in Chicago. The doctor at Rush put me on several different medications seeing what would work, I was on a mixed combination of miralax, kristalos, dulcolax bisacodyl, stool softeners, phospho soda, milk of magnesia and many other laxatives. The dulcolax bisacodyl was the only thing that actually worked for me.
I started out being able to take just 2 bisacodyl and 3 stool softeners a day and that would have me going. Slowly I started having to take more and more bisacodyl in order to go, currently I take 21 bisacodyl a day. I took a trip to cleveland clinic and had several tests done there along with pelvic floor dysfunction therapy. After one session of therapy it was determined that PFD was not the issue at all. I was then diagnosed with Colonic inertia. November of 2009, I was taking 11 bisacodyl and 3 softeners a day, suddenly I was unable to go so I upped my dosage and still couldnt go. I was told to go to the ER just incase it was an obstruction. After xrays and my parents freaking out at home (this all happened when i was away at school), we found out that it wasn't an obstruction and being at a college town hospital they had nothing else to tell me. So i set up an appointment with the doctor at Rush again. He told me that it was time to talk to a surgeon and just see what the surgeon had to say. We set up an appointment with the surgeon at Rush. After talking to him and telling him what seemed to be my life story but was really only 2 short years of my life he decided that it was time to get a stitz marker test. I had the stitz marker test 3 weeks ago and just got the results back last week. Turns out that it takes the average person 40 hours for full transit and when it gets to 60 hours thats when things begin to lead to surgery. He said that my time was over 100 hours shocked. THroughout the test i did not go to the bathroom at all so every single marker was still inside of me, lets just say the days after the test was not any fun at all.
So now at this point we have scheduled the surgery for May 10th. My last day of finals is May 6th so I have all summer to hopefully recover and not miss any school during the fall. I am really anxious for the surgery because i feel like after all this there is finally a light at the end of the tunnel (ofcourse I do realize that light is FAR FAR away) but still there and reachable. My parents (as all parents would be) are to say as an under statement freaking out. I know they want me to be "normal" and "fixed" but they are scared of the fact their daughter will be getting a major surgery.

Anyways the point of this LONG post (sorry for this short novel) is that I know I will have several questions along with my parents questions. Right now we are all overwhelmed with the new information of surgery, but i am curious what questions you guys asked your surgeon the first few times you met with them before the surgery. I don't want to walk into the consultation with no questions because I am the kind of person that tends to freeze up. Do you guys have any suggestions?

Thanks & God bless,

Amanda
Posted 3/10/2010 2:08 AM (GMT 0)
Amanda, did they say what kind of surgery they would do?  What part of the colon did your sitz markers end up at?  Leslie
Posted 3/10/2010 2:28 AM (GMT 0)
Peltz (Sarah)- I have such an aching heart for you tonight. I just told my husband and he could not believe what your poor little boday has gone through. I remember when they mentioned CIP to me in the previous months before my recent surgery, but I knew listening to your stories I was not in the same situation as you. You have an amazing attitude and taking it day by day is all you can do, but I will pray God wrap his arms around you and lift you up in these times of struggle and pain. I hope that you can find a doctor to listen....as you know that took me a great deal of time to before I was wasting away and in so much pain I felt like dying. I hope you use this forum more as a place to reach out for support. We are all here for you as you are far to young to have to still be dealing with such horrific pain and frustrations. My symptoms started as a baby as well, but it wasnt until I was approaching my 20's it get so bad. I still thank you for all your help during my recent crisis and know I am here if you ever need anything.

Amanda- Welcome honey....I started out the same way as you....please give a little mor einfo about the surgery they have decided on. A total Colectomy is my guess as I hope they would do this versus a sub total colectomy? I would love to help you  out if you just give a little more info. Welcome sweetie. This is a great place with a weath of knowledge.....and caring people here for you.

Lizzie

Posted 3/10/2010 3:44 AM (GMT 0)
Peltzier, I am astounded by your courage to be your own advocate. What an incredible journey you've had, and thank you for sharing it here.

I am going to re-do the Sitz marker test this week. Last week I was off of all my 'tummy' meds, but I still was taking meds for another chronic disease that MAY have influenced the results. I told my GI that I really needed to re-take the test, for MY peace of mind, since the results have such an impact on my decisions. He still expects it to be abnormal.

I'm not entirely sure if for some reason the transit comes back 'normal', if that will mean removing the 'extra extra' part of the sigmoid. My question for those of you here: If I understand, the total colectomy is the treatment of choice for the CI, with or without pelvic floor dysmotility, right? SOOOoooo, if there is redundant colon withOUT delayed transit, then what? I'm pretty sure I'll have the same abnormal result (really abnormal), but if for some reason it isn't TERRIBLE, what are my choices?

Amanda, I'm right there with you about wanting to gather the questions I need to ask. I meet with both GI and surgeon later this week, before my Sitz marker test is complete. If anyone can suggest questions for me to ask, for MANY of us newbies, actually, Please post.

Thanks so much for the generosity of your knowledge.
Posted 3/10/2010 4:41 AM (GMT 0)
Hello,

I am a new poster, but have been reading these posts for a couple years now. I, too, have colonic inertia. As a child, my mother said I was already very different from my other siblings (as far as bathroom habits go). As a teenager, it got worse and worse, and now in my twenties, it is unbearable. I have horrible side effects most of the time. A normal timeframe for any activity for me is between 10-16 days, and at that point the small amount that is pushed out is not remotely satisfying. I now have to take something to have any real activity whatsoever.

I have tried everything and asked every doctor I've ever been to for help. Recently, I have started seeing a specialist. I really went to the specialist knowing what my issue is and knowing what tests I need, etc. I let him know this, and he said, "I've been doing this for ten years, and I've never had to recommend that someone remove their colon." It made me think that he is unwilling to listen to me or work with me. He is trying to put me on combinations of medications, which aren't making any difference. I have had the sitz marker test, which showed very little/no progress inside the colon after 13 days. I have had a colonoscopy as well. (The prep for the colonoscopy made me go to the bathroom, but in a controlled fashion--I could sleep through the night. My other family members described their experiences as "violent" after drinking the prep. The doctor said that there was still waste in my colon during the colonoscopy. I wanted to ask him that if the prep can't clear me out, why does he think small/regular doses of other meds will?) Now, he seems to want to continue trying medications and I just want to have the defecography and manometry tests so I can move on with the process.

Has anyone else had troubles with doctors not working with you (simply because it is new to them)? In addition, is it possible to have these other tests without your doctor referring you? Finally, does anyone know a surgeon in the Louisville/Cincinnati/Cleveland area that they were happy with?

I am scheduling another appt. with the doctor soon, but I don't like the idea that he can hold me back from what I need just because it is out of his comfort zone. Any input would be appreciated.

Thank you for sharing all of your experiences.

Quinn
Posted 3/10/2010 7:05 AM (GMT 0)
thank you so much for all of your guy's support already. It's so nice to finally be able to talk to someone who knows exactly what I'm going though!!!

They want to completely remove my colon and attach my small intestine to the rectum. The stitz markers were mainly in my rectum/lower colon but there were about 10 that were still scattered throughout my colon.

Amanda
Posted 3/10/2010 1:22 PM (GMT 0)
Quinn, if I were you I would go to Cleveland Clinic. They've got top notch doctors and will get to the root of your problems. Lizzie just had her surgery there, so maybe you could ask her some of your questions.

To all of you,
Thank you so much for caring so much. You are the most wonderful women! I hope that we can all find peace along our paths, and that the doctors will listen to all of you, too. Dr. Wexner from Cleveland Clinic in Florida has been great. He even told me to make another appointment if I wanted to talk some more, and he is such a busy man. I was scared when I came out of his office, but I'm going to hand it over to God and let him be in control. I'm praying for all of you, too. We're all one big family..

butterfly
Posted 3/10/2010 6:13 PM (GMT 0)
Amanda,  when your colon does not work the best thing to do as they did to me was remove the whole colon and reattach you to your rectum...find a teaching hospital and the will do it Laproscopically....mine they had to cut through all my muscles so a much longer recovery.  Find a doc that will listen...good luck hun...Leslie
Posted 3/10/2010 6:15 PM (GMT 0)
Quinn, when the prep does not work then that tells you gobs.  My golightly and everything else I took did not come out at all.  So they took my colon because it was shot....keep the faith.  Leslie
Posted 3/10/2010 6:50 PM (GMT 0)
Quinn,

I am from Michigan and have had four surgeries now, but the last being my most risky and difficult was done in Cleveland at Cleveland Clinic by Dr. David Dietz. He studied under Dr. Fazio who is known as one of the best, but does not practicw much anymore or if at all. I saw four surgeons there (Zutshi, Remzi, Marrero?, and Dietz) I just recently had a K-pouch made. I had colonic inertia and also developed rectal inertia so the Total Colectomy did not work for me. I had my first three surgeries (TC, ileostomy, ileo reversal) here in MI, but I was in the hospital nearly 6 weeks this last time and Cleveland has the best. I siffered many complications after the surgery and never felt I could have been in better hands. Dr. Dietz is very nice, has great bedside manner, and the surgery I had not many do anymore or like to do or your not a candidate for and he did it for me.....I have his info and numbers if you need them. I just got home about 3.5 weeks ago so I still have everything handy. Hope you can get some help and Cleveland is where you should go!

Lizzie

Posted 3/10/2010 8:59 PM (GMT 0)
Checking in . . .

I've been lurking, reading and praying for all of you these past several days. I wish I could give advice but I'm a newby here myself, waiting for my doctor to refer me to a surgeon.

This go around I've been taking one Ducolax per day as well as Miralax, thinking it would be the safest way to deal with the chronic constipation. Yesterday it threw me into a severe colon spasm at work. Also using Fleet at night but none of this is working. Last poop was Friday. Looks like I'll have to go back to popping four Ducolax at once then dealing with the spasms.

Gastro doctor said it could take up to a month before Miralax starting working so I supposed I'll give it that long before I call his office to make an appointment.

Quinn - Sorry your doctor won't help you. Are you going to see if you can get another or does your insurance company have you assigned to this one?
Posted 3/10/2010 9:05 PM (GMT 0)
Another thought - I have a fear that I have a pelvic floor dysmotility because often I have to manually disimpact myself. If so, would having my colon removed do any good? How can I find out? Is there a test for that?

Thank you!!!
Posted 3/10/2010 9:18 PM (GMT 0)
Hischildvalda,  Yes there are tests:
  • Pudendal nerve testing - The pudendal nerves have branches that travel to many of the pelvic floor structures including the anal sphincter muscles. The pudendal nerves are often stretched and damaged during childbirth. Such damage may contribute to fecal incontinence. A simple test is performed to measure the best fibers of the pudendal nerves to the anal muscles.
  • Anorectal manometry - The pressures generated by the anal muscles are tested at rest and during squeezing. We also measure reflexes that contribute to bowel control and various measures of rectal sensation.
  • Anal Ultrasound – Anorectal ultrasound is a very useful tool for imaging the anatomy of the anal sphincters and rectum in patients with a variety of anorectal diseases. It is not an x-ray, therefore there is no radiation exposure. A probe the size of an index finger is inserted into the anal canal and the rectum. Using ‘sound waves’ produced by the probe, an image is captured on the screen. The patient may feel vibration from the probe during the examination, but discomfort is uncommon. The study takes 15 to 30 minutes.

    • Mirilax should work within a few days, my doc said to drink at least 3 8 oz glasses a day till you go.  But nothing worked for me.  I hope this helps...Leslie

    Posted 3/10/2010 9:23 PM (GMT 0)
        JT80 Hi, does anyone know what happened to JT80,  have not herd from  him in a good while.  I hope and pray that he is ok.....worried...Leslie
    Posted 3/10/2010 9:50 PM (GMT 0)
    Thanks Leslie. As cautious as my doctor is, I'm sure that he will have me tested before referring me to a surgeon. Thank you for posting so quickly - you eased my mind (and I needed it eased LOL).

    I don't believe I've seen JT80 post.

    val
    Posted 3/10/2010 10:14 PM (GMT 0)
    Hischildvalda  You know the sitz marker test is a great one for finding out if your colon is the problem, it will tell you if things are moving through at a normal rate.  That test was the final test for removal of my colon.  I will tell you that having my colon removed was the very best for me, mine was not working at all, and I have felt better since the day it was removed and I know that I will have my life back now.

    I sure hope that they take care of you and if you do not like what one doc says go to another a second opinion is always a good thing.  Best of luck to you sweetie, the waiting for things to happen is the worse so I hope that it happens in rapid time for you.

    You know that they say God never gives us more than we can handle.....and I had got so sick and to the point that I almost did not believe that.   But man some things are just endless and so debilitating it makes you wonder.  I am not a church going woman but I do believe in God and in prayers and was raised a Catholic all my life but do not practice that religion.  So having faith or belief in a higher power I figure can never hurt....LOL

    So be strong my friend cuz I will be keeping a close eye on you.  I have had a total colectomy so if you want to ask me anything please feel free nothing is off limits.

    Leslienono

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