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Total Colectomy Part 10

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Posted 3/25/2006 5:05 PM (GMT 0)
Sounds like you're doing well.
Cathy
Posted 3/27/2006 7:37 PM (GMT 0)
Annette-
There have been a couple of us that this happened to. The reason my hair fell out was due to malnutrition. I had complications after the first surgery, and I was on TPN (total parenteral nutrition) IV for a few weeks, then a second surgery and eating was slow going after that. I lost about 3/4 of my hair and I'm starting to grow some again. I don't plug the shower drain anymore with hair falling out. I really did feel like it was all going to fall out but suddenly it stopped falling out and I have new peach fuzz starting. The hair loss is not a life threatening side effect, it was my life threatening infection/sepsis that caused the hair loss. It's not the norm.

Cathy
Posted 3/27/2006 9:26 PM (GMT 0)
Hi everyone,  I had my first x-ray this morning from my transit study. They said that all the rings have passed through my small intestine and are now located on the lower right side of my large intestine and kind of bunched up.  This is exactly what I thought would happen. Nothing moves from that spot.  I guess I have to feel "lucky" that I have good motility in my small intestine right?  I mean if I had to have a subtotal colectomy isnt one of the things they check is the motility in your small intestine?  Isnt the lower right side the beginning of your large intestine?  It wil be interesting to see what Wednesdays x-ray shows.. Thanks for your help ! P.S. Cathy thats scary about the hair loss..... I'm glad thats not a common side effect of this surgery.
Posted 3/27/2006 9:30 PM (GMT 0)
Cathy, I forgot to ask, why did you get the sepsis? Is that common after undergoing a colectomy because residual stool can leak out during surgery and get in your bloodstream? Thanks
Posted 3/29/2006 3:21 PM (GMT 0)
Mom23-

I got septic because right after my colectomy surgery my anastamosis site herniated through the omentum and perforated.  It took 2 1/2 weeks for them to figure out what was going on and in the meantime I got septic (or sepsis-infection into the bloodstream).  I was in total system failure, confused and disoriented, and in ICU before they figured it out.  At one point they drained 3 liters of fluid out of my abdomen, which was obviously infected.  They say I looked 6 months pregnant.  My husband literally grabbed an intensivist (ICU specialist) by the shirt collar, explained that his wife was dying and no one could figure out what was wrong and would he please take a look at me and my records.  He quickly noticed an air line on my CT scan that the radiologist and surgeon both missed, and within 3 hours I was back into surgery.  I was given 2 units of blood and an ileostomy.

So, the long and short of it is that this was not a normal side effect of the surgery.

The hairloss was from prolonged malnutrition while I was "out of it".

Hope this helps.

Cathy

Posted 3/29/2006 10:12 PM (GMT 0)
Hi everyone,  Thanks for the information Cathy.  I went for my second x-ray this morning and all of the rings are still on the right side except for two of them that have slightly moved to the transverse colon.  I am so miserable it is beyond words.  I then went down the hall to my GI's office, (still trying to be rational and sane at this point) and talked to the nurse.  She called me back and apparently he wants me to finish the x-ray on Friday so it can be "documented" .  What the heck does THAT mean?????  He already said that I failed the test and I wanted to shout I TOLD YOU SO..... but I held my self back.  I will see him next wednesday to discuss what to do.  So what exactly are my options here, because I know its going to be the same on Friday?     I just dont think I can wait that long, I dont think I can even make it till Friday?  What if my colon explodes?  HELP PLEASE!!!!!!!!!!! 
Posted 3/30/2006 1:19 AM (GMT 0)
Thanks Annette,  Did your Dr. tell you there were any other options other than the subtotal colectomy. You're scheduled for that in May right?  Although if there were any other choices, I would have surely have tried them by now. I'm going to be on that x-ray table on Friday with a box of ducolax in my hand and a water bottle in the other.  Thanks for your help.
Posted 3/30/2006 2:31 AM (GMT 0)

I have to say I have been watching all of the posts with alot of attention and I have read every single one, even though I have not had any time to reply.  I have to honestly say I am concerned with some people whos surgeons have been recommending the surgery.  I would have tried ANYTHING to go to the bathroom normally and when I had my surgery there was not ONE medication that actually worked. 

I have seen people who state that a certain medication actually works them... although the medication is not palatable.  You really need to think about whether you can live with the complications that could result from this surgery... this is a life altering change and you have to also consider the implications that could occur later in life.  I would never have had this surgery if there was ANY other to produce a BM besides an enema for me...

Sorry just had to put my two cents in!  Cathy - it sure sounds like you are doing well girl!  How is the practice doing?  How is your husband?  Daughter?  Dont forget to take some time for yourself!

My medical update, they are theorizing that I have dysmotility of the small intestine as well, as I recently just had a small blockage which needs to be removed with multiple enemas and my stool frequency is not what they would expect.  Additional testing was offered, but I refused at this time because I am still going every 2-3 days and I do not need medications and getting further testing will not change my prognosis or treatment... so thats where it is left right now!

Sasha and Chris - how are you guys doing?

Hugs,

Emma

Posted 3/30/2006 3:14 PM (GMT 0)

Annette - thats wasnt my intention to make you leave... I was kinda cranky last night, but I did reread my post and I think it is just honest.  This is a major surgery, ask your self... could you deal with it if you came out with an ostomy and had to live with that forever... there is about a 5 percent chance of that happening.  ALOT of people on here have had complications, some major some minor... but they are definately out there.  If Mag Citrate actually works for you, why dont you just take that medication on a weekly basis or something like that.  Have you tried miralax?

My dysmotility was so severe that I had to be hospitalized to get prepped for the surgery... because NOTHING they had tried was working.  In fact nothing did work... I ended up vomitting large amounts and had about a million enemas to get cleaned out for surgery... no prep was effective to make my colon produce results.

Sorry if I offended you...

Emma

Posted 3/30/2006 3:33 PM (GMT 0)

Then I misunderstood you, and just ignore me.  I had 4 sitz marker tests and never had any kind of prep afterwards, so I did not understand you.

You know if this is the right decision for you, and it sounds like it is... so I am sorry.  Guess perhaps I shouldnt post after working 16 hours... my mind isnt quite clear!

Posted 3/30/2006 3:33 PM (GMT 0)
Emma,  I didnt reply to you last night, because I wanted to reread what you wrote to make sure I was understanding you correctly.  You said you are concerned that everyones surgeon is recommending this surgery. Well why did YOUR surgeon recommend this surgery?  I still have all 24 of the rings in my colon and they havent moved. So did Annette.  I have tried EVERY known medicine to help my situation and for a while they have worked, but over the years it has gotten less and less effective.  I am to the point now where enemas go in , but they dont always come back out.  I had to quit a job that I love and am litterly housebound due to this pain. I have NO quality of life whatsoever!!!!!  I also dont think that drinking golightly or magnesium citrate weekly is any way to live. 

    What long term problems are you referring to as a result of this operation.?  Please explain.   From what I have read, people seem very happy to have been given their life back.  I have read through all the posts on this entire forum and I do have to say it seems like a very tight knit group, that I'm not going to be able to break into no matter how hard I try. I havent had much feedback or support from anyone compared to the previous posts. 

   Annette, if you find another forum, please let me know.

 

Posted 3/30/2006 6:08 PM (GMT 0)

Alright since you asked, here are the long term complications that can result. 

First you could end up with an ileostomy for the rest of your life, or just for a short time while you recover.  You could have a rupture of a anastomosis site resulting a severe systemic infections.

about 1/4 of all patients who have a major intestinal surgery will develop a small bowel obstruction at least once in the first year after their surgery.  Thankfully, most of these clear with treatment and without surgery, but about 10% of people will have to have an additional surgery to fix this. 

Dehydration, because your large intestine is responsible for reaborbing water, you are more susceptible to have more severe illness from any infection that causes nausea and vomitting.  Unlike prior when you could get away with not drinking or eating for a day or two when you were sick, now if you do not have intake for more than a day or two you could get dehydrated.  I have already had to be hospitalized twice both times for one night because of nausea and vomitting from an illness.  All they did was give me IV fluids, but it was still obnoxious and an inconvenience for me.

And adhesions, every time that you have intra abdominal surgery, you run the risk of developing adhesions (which people on this list have had) and those adhesions can cause a bowel obstruction which may need to be surgically removed.  Now you are looking at another section of your intestines that is not present, and looking at a section that was absorbing nutrients that no longer can do this.

Truthfully, the surgery has been a godsend for alot of people and I would repeat the surgery again in heartbeat, but I like many people had a complicated post surgical experience and have had some complications during the last year.  I only posted my post to make those people new to this surgery aware of both the risks and benefits.  Being in the health care field myself, I know that frequent surgeons like to cut.... and seem to forget to inform patients some of the negative outcomes for fear of scaring them.  I personally feel that you should know the whole story.  That being said, a recent study done in 2001 showed that 94% of patients are happy with the results of the surgery (and this includes people who had complications).

Emma

Posted 3/30/2006 6:12 PM (GMT 0)
Ladies, Ladies Ladies,

I think Emma is right and she wasn't trying to offend any of you. We are not trying to keep anyone out of this forum. I too tried everything I could before my surgery. If the transit test doesn't work, have they done the Gastrographin Enema? My GI did that first before he sent me to the Surgeon. I read up on everything I could get my hands on, but was really fortunate to have a friend who had this surgery when she was 18. She told me about everything. I have suffered chronic constipation my entire life. I must say I now, after having both my surgeries am doing much better. I still have a deep cavity though due to my infection in my incision. I am still having to go to the Wound Care Clinic every two weeks. I have lost some hair as well, not as bad as Cathy. I think the hair loss is also due to multiple surgeries. Please don't look for another forum. We will try to help as much as we possibly can. I have been reading the posts, but I too have been busy. I really think prayer is the only way you can be sure of having this surgery. I will try to help.
Blessings,
Sasha :-)
Posted 3/30/2006 7:31 PM (GMT 0)

Oh my goodness, I've missed alot! 

I don't think that Emma was trying to offend anyone.  I sort of agree that if I found something that honestly worked, even if it tasted horrible, I would have done that, as long as it was safe to do so on a routine basis.

Also, my colorectal surgeon DID NOT recommend the surgery to me.  He merely gave me the facts, helped me to find other options and allowed me talk to other patients that had the surgery (some that had good experiences, others that had really bad experiences).  The final decision was up to me. 

I also never had any sort of prep before or after the marker study.  Why exactly would you need one?  The rings don't make the constipation worse. 

I was one that had no complications after surgery.  I'm very happy with my decision, but of course, I always wish that there had been something that even remotely worked for me, other than just not eating. 

Also, interestingly enough, there is a new medication coming out, sometime in the Spring '06 used to treat chronic idiopathic constipation.  If I hadn't already had my surgery, I think I would be waiting to see what this new med is all about.  But, that is just my opinion. The name of the med escapes me right now, but I assure you, I read the study and clinical trials.

I think all of us here know what it is like to feel full of crap, literally.  No one is trying to make light of anyone else's symptoms or individual story.  It is terrible not having any sort of quality of life, not feeling comfortable, not feeling "good", ever.  In the end, I think we all do what we feel is best for us, I can only hope that much care and thought goes into our decisions.

~Somer

Posted 3/30/2006 8:00 PM (GMT 0)
Hi Somer, The new medicine you are talking aout is called Renzapride (Amitiza).  It will be available this spring, and I certainly plan on trying it before I have any surgery.  But you cant help but wonder if it will eventually stop working like everything else.  I never had any prep before my transit study... what he is giving me is magnesium citrate for after my last x-ray tomorrow to try to get things moving, along with 6 ducolax.  But in the past, these things havent worked for me. 

     I am just very discouraged right now, let alone feeling miserable from being so backed up for the past 14 days (but whos counting).  Can you tell me why your surgeon did not recommend the surgery?  I just want to get as much information as I can. Thanks

 

Posted 3/30/2006 8:07 PM (GMT 0)

Mom - im sorry that you feel so miserable, I was just suprised that they would give you something after the test.  I went the longest of 21 days without a BM and nothing was ordered for me.  My surgeon also did NOT recommend the surgery... honestly I think it has something to do with legality.  The surgery is considered an elective surgery, so recommending it may not be a good legal move by the surgeon.  My surgeon never recommended it, he just gave me information and said that he would be willing to do the surgery if that is what I insisted on.

Somer - so good to hear from you!  You are one of the only people left who has not had any complications from surgery... how is the upper GI stuff?

Hugs,

Emma

Posted 3/30/2006 9:12 PM (GMT 0)

I am confused with some of the reported statistics on problems post op.  Now I had j-pouch surgery which is more complicated than the surgery for  CI but still some of the stats are different than what I have learned.

I have never seen any report that indicates 5% people who have a colectomy end up with an ileostomy.  Could that be because this is related to motility and the problem is then identifed in the small instestine?  This figure certainly is not accurate for those that had surgery due to FAP or UC.

Yes, the opportunity to get a blockage after ANY abdominal surgery is increased.  Most of the blockages are partial and can be alleviated at home.  Most blockages occur in the early months post surgery.  I have had maybe three partial blockages, all in year one post surgery.

Dehydration can be an issue and one must certainly watch their fluids if they have diarrhea and vomiting.  But on a regular day I only drink one cup of coffee and one glass of water during the entire day.  This was my fluid intake prior to surgery too.  You won't really know your hydration until after surgery but most j-pouchers do not have dehydration issues.  In fact the success rate for j-pouch surgery (which is different than surgery for CI) is about 97%.

Adhesions can be a problem but any surgery will cause them.  Again most people don't get severe adhesions.

Any surgery comes with risks.  Knowing the risks and researching the credentials of your surgeon is paramount to a successful outcome.  That and having a positive attitude.  If you don't have a good quality of life and have exhausted medical treatment, surgery can give you your life back.

Sue

Posted 3/30/2006 9:57 PM (GMT 0)
Mom,

I know the feeling, I would usually go 2-3 weeks (which was normal, for me) between BM's-then followed by awful diarrhea.  It is the worst feeling, knowing how bad you feel, and others looking at you like you're crazy.  It is definately discouraging. 

I find it sort of odd that you haven't had a colonoscopy.  Usually that is a gold standard, gives them a good idea of what your colon looks like from the inside.  I think I would have that done, can't hurt right?  I personally, have had 2. 

I don't think any surgeon can "recommend" surgery unless it is absolutely necessary.  Surgery for our problem is, as Emma said, elective.  It is our choice to have this done.  The surgeon can say that one may benefit from the surgery, but must inform you of the risks that may occur after surgery.  I'm not saying that insurance won't pay for it, as long as your history and diagnosis support it and you have supportive evidence that other therapeutic measures have been exhausted, usually they will cover it.

My case was a little different, as I would have severe constipation, followed by what seemed like never-ending diarrhea. 

Emma, good to chat again.  I've been so busy with work, we just hired 3 more doctor's so our practice is booming.  Upper GI sxs are about that same, on Nexium twice a day.  My RA is acting up a little bit now, probably b/c of this crazy weather pattern we have going here.  It feels like you fix one problem it gives 10 other ones a chance to bother you.  Funny how that works! tongue

~Somer

Post Edited (Somer) : 3/30/2006 3:23:26 PM (GMT-7)

Posted 3/30/2006 10:25 PM (GMT 0)
Emma, Somer, Sasha, Chris- I thought you guys abandoned me. I hope you all are doing okay. I've missed you all.

Boy, I take a couple days off and look what happens. As long as everyone is clear that this surgery should be a last resort, we should move on. The 5% ileostomy risk is due to perforations or complications at the anastamosis site. I would like to say, ladies, that I have not cherry coated this surgery. In fact, I've said repeated not to think that this is a piece of cake. The GI's/surgeons need to have documented the sitz marker failure because for starters it is the gold key standard for diagnosis of CI. They cannot "just take your word for it." If the pain and misery gets too bad, go to the ER, but you are at risk for messing up the study and needing to start over.

I'm doing well, all things considered. My daughter's asthma is good right now, April I expect another outbreak due to her allergies. I'm struggling with my 14 yr old son. They can be a real pain in the butt sometimes!!! Work is going well. Busier than ever. I just had to buy 6 more chart racks, we keep running out of rack space. I'm not complaining. I love what I do and wouldn't change anything, well okay, maybe a few less hours. I'm eating whatever I want these days. BM's maybe twice a day. Occasionally a flare up of an old pregnancy hemorrhoid that I could do without. I have never in my life spent so much time in the bathroom. I remember the BM every 4 weeks. That's not much time. I spent more time trying to go than I did actually going. I still have pain in my lowest ribs, I don't know why. I also get the pain on the lower right side that everyone always talked about before. My surgical incision is starting to keloid around my belly button. I'll have to get that treated at some point. Right now, I am just soooo done with doctors and procedures and tests. I just want time to figure out this new body. Somer and Emma- remember I'm just now 7 weeks post op and where I should have been back in Oct 05. It's been a long 7 months. I still stand by the 6 week recoop standard, both surgeries 6 weeks was the turning point.

I just want everyone in this forum to know 1: I wouldn't have made it through all of this if it weren't for you all, and 2: I consider, care and love all of you just like family.

Peace,
Cathy
Posted 3/30/2006 11:39 PM (GMT 0)
Hi, I have also wondered why they havent done a colonoscopy, even though I have asked for one. I dont know about all of you, but my Dr.s have all seemed to just push fiber and biofeedback. But to a person who has colonic inertia, that is the worst thing you can do. I agree with the legality end of things, because my Dr. wanted me to finish this test so he could "document" it. Now I wonder if that was for insurance purposes or to cover himself in some way. I dont know. I know there are pros and cons to having the surgery, and no situation is ideal, but I still cant help but thinking it has to be better than living like this. But maybe I'm geting my hopes up for nothing, and will still be constipated if I have this done. Now I'm getting really scared.
Posted 3/31/2006 1:06 PM (GMT 0)

Cathy-  I kept checking in some here and there, but I've been too busy to reply to any posts.  I'm glad you are doing well, all things considered.  It has been a long haul for you, but I'm glad you are up and running again. 

Mom, all of my GI docs pushed fiber also.  Nothing helped, didn't matter what amount I took, numerous times per day.  Honestly, the only thing that kept me going was not eating, anything.  Nothing goes in, noting in there to come out.  It was a horrible way to live.  Even my husband thought having the surgery was extreme.  I ,too, thought it was extreme and thought about it all the way up to when they were wheeling me back to the OR suite. What if something goes wrong? What if I have to live on the toilet when I'm healed? What if I end up with an ostomy, can I live with that?  There are so many things to consider, I think it is healthy to be scared.  If you weren't scared,  I would be worried.

~Somer

Posted 3/31/2006 3:27 PM (GMT 0)
Cathy- I am doing much better. I have been busy with kids and stuff. I have been reading all the post though. I am now able to eat pretty much what I want. I had chili the other night and was just fine. I am really glad I had the surgeries done now, despite all the complications I had. I just really need to get myself exercising now. I seem to have other female problems going on now though. Have you heard of that happpening after surgery? I have had two periods this month. I too don't want to go near any doctors, or have any procedures done for a very long time. I do however have to go have a mamogram done, I am over due.
I hope you are feeling better and stronger every day. I know what you mean with teenagers, I have a 13 yr old now. He can be really moody or really crazy. Hope life continues to be on the up and up for you and your family.

Emma- How are you doing? I am doing much better. I think it was good of you to express all the pro's and con's of the operation. I hope everyone will do their own research about the surgery, and certainly pray about it.

Chris- How are you? Busy I guess just like the rest of us. How are you feeling after the problems you had?

Somer- How are you doing? I hope things are going good for you.

Mom23- Please don't look for another forum. We will try to help you as much as possible. I do think however you need to get a colonoscopy done. If your dr won't do it, get a second oppinion. What is this biofeedback you all are talking about? I have never heard of it or had it done. Did a psychologist tell you to do it? I am clueless as to how that would produce a bm. What do you do talk it out???Lol Find a new doctor if you aren't happy.

Lesa, all the others- How are you all doing? Our forum has gotten so big. I hope everyone is doing fine.

Blessings to you all,
Sasha yeah
Posted 3/31/2006 6:38 PM (GMT 0)
Hi Everyone,

My surgery is in 10 days.  I can't wait for all of this to stop.. any suggestions on what to take to the hospital with me??? eyes

Tweety

Posted 3/31/2006 6:44 PM (GMT 0)
Hi everyone,  Well its over. I just had my last x-ray and all the markers are still in there.  Just as I thought.  Now I have to wait until Wednesday to meet with the GI dr. and see what he has to say.  I feel like the rest of my life is resting on this next apt.   I'm sure he will want to do a colonoscopy since I have had every other test several times already.  I guess all I can do now is pray. thanks for listening! :-)
Posted 3/31/2006 7:58 PM (GMT 0)
Tweety-
Take CHARMIN, Cottonelle wipes, and your own toothbrush and toothpaste. Hospital toilet paper sucks. I took Tucks pads just in case and my normal toiletries. Now is not the time to change your favorite products for cheap hospital crap! I didn't use the pj's I brought, the gown was easier, but to each his own. I used my chapstick alot and lotion for my legs. Hope this helps.
Cathy
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