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Total Colectomy Part 10

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Posted 3/13/2006 7:45 PM (GMT 0)
Hey all,

I didn't mention this in my last post because I was just assuming that I had the flu or something.  However, after spending a very unpleasant night, I thought I would post what is going on to see what you guys have to say.

As I said before.  about 3 weeks post up, my bowel movements had settled down into a nice pattern of ~3 times a day and had become more solid than liquid.  All of the pain had pretty much gone away and except for an itchy incision, I was feeling well on my way back to normal.

However, about a week ago, something changed and I am now going 20+ times per day (sometimes much more), nearly 100% liquid.  In addition, I am achy all over my abdomen and have started vomiting.  The vomiting seems to be a hit and miss thing and seems to get worse at night, although I have had some bouts with it during the day.  Laying down on my side in the bed seems to make things worse but I seem to be able to tolerate laying on my back in my recliner and have slept there several nights this week.  Is this part of the normal course of my body adjusting?  Do you think it could just be the flu?  I have no other symptoms, no fever, etc and the nausea and vomiting are not a constant. 

Thanks for all of your input and support over the past couple of months.

/hugs

Chris

 

Posted 3/14/2006 4:20 PM (GMT 0)

Chris- those are symptoms that I would never consider to be the flu first.  nono First, always assume it's your intestinal issues because if it's not, it's only egg on your face, but if it is you've saved valuable time. yeah

By now, you're surely dehydrated and are in need of IV fluids.  You probably need a CT scan to make sure there isn't a blockage or narrowing of the anastamosis site.  GO TO THE ER!!!!

Let us know what happens.

Cathy 

Posted 3/20/2006 2:19 AM (GMT 0)
Cathy,
Thanks for all the useful information. What was wrong that you had to go in for this? I have colonic innertia. I had the flu over the weekend.UGH!!!! Its been pretty nasty. The pains are getting unbearable as it is and now this....I am nervous about the surgery. I wont go in until April. I wanted to get things done before hand. Did you have abdominal bloating before surgery, nausea, vomiting of bile. ?????Please write back
Posted 3/20/2006 4:34 PM (GMT 0)
Hi Tweety,
I too, had colonic inertia. I was getting pretty sick before surgery. Bloating, nausea, vomiting etc.

I was nervous about surgery too, mainly because I didn't know what to expect, and most of my colleagues had never heard of this dramatic of a surgery for our problem. But, that God for this forum. Talking to people who understand, and know what we're talking about is a real help. There is no way that my husband can understand what I was/am going through. He does his morning ritual everyday, rain or shine. Even doctors think we're nuts.

My subtotal surgery went fine until postop when I herniated and perforated at the anastamosis site. That went undiagnosed for 2 1/2, meanwhile I was getting very sick. I ended up in total organ failure/peritonitis before a third doctor looked at my CT scan and saw the leak. As we say in the business, I had one foot in the grave and the other on a banana peel. Once the diagnosis was made, I was back into surgery within hours. I came out of surgery having been given 2 units of blood and an ileostomy. I stayed in the ICU another 2 1/2 weeks then out to the floor and then home to recover. 4 months later we did an ileo pull down where they reconnected everything again. So, right now I'm 6 weeks out and where I should have been in mid Oct.

My story is not the usual. I'm the only perforator amongst the group. That's pretty good numbers. 6 weeks has been the standard for recovery time. If it goes faster for you then great, but don't be surprised if it takes the whole 6 weeks.

Let me know if I can answer any questions.
Cathy
Posted 3/20/2006 10:34 PM (GMT 0)
Hi Cathy,  I'm new here and have been following a few of your posts.  Did you have a subtotal colectomy?  Thats what they think I will have to have done.  Does a person always have to have an ileostomy for a few months if they have this surgery?  I am having another transit test done to confirm colonic inertia.  My colo rectal surgeon on the other hand, had sent me to biofeedback due to the results of manometry testing.  However I feel that was such an inaccurate test compared to what it is really like. The biofeedback did nothing for me at all.  You sounnd like you had a really rough time of it.  The worst thing for me is the NG tube...i dont think I could do that again.  Thanks for any help.
Posted 3/21/2006 1:57 PM (GMT 0)

Cathy

Thanks for all your support and information.  Before I found this site I was really scared.  Don't get me wrong I m still scared.  But it helps to know I am not the only person in the world going thru this.  And of course I' m not nuts.  Yeah the bloating has gotten alot worse in the last week, I had the flu last weekend.  And now I am bloating every single time I try to eat.  I can't get very much food down and then the bloating and nausea starts.  Its a nightmare.  I am hoping this surgery takes care of all of that.  Not a lot of people know about this stuff.  Is it hereditary?  Do you know.  I have alot of family members that take laxatives on a regular basis and I try to tell them they don't have to continue doing so if they see a doctor.  I am sorry to hear that you had such a hard time, I hope I don't have those.  They are going to try to start lap and hopefully not have to open.  I have had a lot of other surgeries abdominally so, he said it is a possibility that it could go to open.  I had a hysterectomy at 24 , and two bladder suspensions , gall bladder removal, and appendictomy.  I have had endometriosis quite a few times since the hysterectomy.  So I have had a few to say the least.  But this one seems a whole lot worse.  I don't know if its because they are removing so much of the colon or what but it does seem a little more scary than the rest.  Thanks for giving me so much input ,  Please let me know more if you can think of anything.  Thanks , by the way I am 37 now.  confused

Posted 3/21/2006 2:04 PM (GMT 0)

Mom23,

Hi, welcome to the forum.  I have only been posting for just a few days but go back and read some of the other forums.  Total Colectomy Part 6,7,8,9.  They are all very interesting and alot of the same problems and complaints.  I am 37, I have colonic inertia, and I am going in for a subtotal colectomy on April 10, I am very scared.  I have been speaking alot to Cathy she has helped me alot .  I have 3 kids and this makes me very nervous.  When do you go for your test.  I finally found a good doc to help me with this , most of the others have said to use laxatives, over the counter meds, and left it at that.  I've done all of that for years and nothing seems to work including the enemas.  Most of the people on here sound like they have been going thru the same exact thing.  Take some time and read the posts .  Thanks

Posted 3/21/2006 10:12 PM (GMT 0)
Hi Tweety, Thanks so much for your reply.  My transit test starts on sunday. I dont know how I'm going to get through the week without laxatives.  I know all the markers will still be in there.  My dr. has told me to continue to take laxatives as well. I'm sure you have gone through all of them like I have. This is totally controlling my life. Im 46 and my kids are older and in college, but I have no one other that my husband to help me and he travels quite a bit.  There really is no "ideal" situation I guess. Did your Dr. send you to biofeedback?  Also, did you get a second opinion of any kind?  I am also scared  out of my mind to have this done. I'll read through the posts to see more of your story.  Did you just keep searching for a Dr. who would finally take you seriously?  I think I need to do that. Please keep in touch.
Posted 3/22/2006 4:00 PM (GMT 0)
Hi Mom23 and Tweety,

An ileostomy isn't normal after a subtotal colectomy, I had herniated and perforated after surgery, which is some of the potential risk factors, and needed a second surgery. Once they diagnosed my problem and reopened me, they knew right away that I needed an ileo.

The sitz marker test is diagnostic of colonic inertia, the manometry tests let them know if you can push the stool out properly if the motility thing is not an issue. The biofeedback is to help you "will" the stool out, lol.

I'm 39 and I have 4 kids, so I know that this is scary. When I started to wake up after my second surgery, I knew that I had died. I saw someone unfamiliar and asked "is this where we go when we die?" I'm sure she thought I was nuts. I had been in a state of mental confusion for a couple of weeks due to the infection that I had, so I was nuts, but I really did think that I had died. I remember rationalizing in my mind that my husband would be okay raising the kids and that they could handle this. How sad is that!

I'll be checking back if you guys have any questions.
Cathy
Posted 3/22/2006 4:30 PM (GMT 0)

Hi Cathy,

Thanks, that is the part that runs thru your mind.  Nobody wants to talk about that.   But I keep telling myself that I will feel much better in the long run.  I've been feeling sicker and sicker these days.,  every once in a while I have a good day yeah

far and few in between.  I appreciate you being honest with everything, it does help quite a bit.  You have actually let me see the better side of the end of this.  cool    Thanks for the input. 

Posted 3/22/2006 10:24 PM (GMT 0)
Hey Tweety,
I too had a hard time after my surgery. I had surgery twice. The first time I had the subtotal colectomy as a lap. The second time I had adhesions and my small intestine was a in a ball with webbed like adhesions. I had to have the open surgery and I developed an infection too like Kathy. I ended up having to have two units of blood because of my hemoglobin count. I am not telling you this to scare you. I want you to be aware of what could happen. I had a lot of surgeries too. My adhesions could of been there or grew fast after the first surgery. The doctor says they were fast growing adhesions. I don't know what to believe. I am just thankful to be alive and almost fully recouperated. They say the magic number is six weeks. It has been about twelve weeks since my first surgery. Just keep the faith is all I can say to you about being scared. I am a believer and I was at peace with both of my surgeries. I will be praying for you to feel peace,and for a successful surgery.

Blessings,
Sasha
Posted 3/22/2006 10:28 PM (GMT 0)
Hey to everyone else!
I have been busy, and still checking in once in awhile.

Chris- How are you doing? Are you feeling much better?

Cathy- How is it going for you? Are you taking it easy?

Blessings,
Sasha
Posted 3/23/2006 12:53 AM (GMT 0)

Hey Everyone,

I posted back in part 9 for the first time. I am 8 weeks post op a open lap-assisted subtotal colectomy. I returned to work last week and I am doing good. My recovery after the hospital stay was uneventful THANK GOD! I followed up with my surgeon and my GI doc last week. I found out from my pathology report that my colon showed idiopathic colonic neuropathy consistent with colonic dysmotility. Does anyone have any info on this? I was told that I would probably lose the rest of my colon due to this and given a timeframe of 10-15 years. I would then have a J-pouch?. Can anyone offer some information about this? I hope everyone is doing well. Thank you. Tammy

Posted 3/23/2006 1:33 AM (GMT 0)

SaShayc,

ThankS , sorry my s wasn't working.  I am scared , believe me.  I am sorry to hear you had all those problems.  I hope I don't.  How  did you know you were having this happen and how soon after the first surgery did you have to go in for the second???  I am worried about all of the previous surgeries causing problems now. Was yours open or lap?  And how is everything working now ?  Hope your recovery gets better for you ..  My thoughts are with you..... yeah

Posted 3/23/2006 2:38 AM (GMT 0)
Hi everyone,  Just a few more questions if you dont mind.  Were all of you diagnosed with colonic inertia by just the transit study? Were all 24 of the markers still inside? And did any of you have to go to biofeedback because your Dr. thought it was "in your head" that you couldnt relax enough to get the stool out? Like pelvic floor dysfunction?  It is only my colorectal surgeon who keeps thinking this, but my GI dr. is a bit more open minded.  If all of my markers  are still in place, then there really isnt anything that will help, is that right?  More and more laxatives just arent doing it and colonics etc.   It's as if everyday its soooo much worse than the last.  Thanks sad
Posted 3/23/2006 2:52 AM (GMT 0)
Hey Tweety,
I had a my surgeries within 2 weeks of each other. The first one was on Jan3
and second was on Jan 28 th. I was released from the hospital on Jan 16th for the first surgery. The second one I was released on Feb 10 th. Off and on I spent a month in the hospital. I started throwing up and having doubled over cramps on Jan26 th. The doctor admitted me and started me on iv fluids. They did a gastrographin enema and notice that my anasmosis was getting smaller. That is the connection to the small intestine I think? The doctor wanted to go ahead and do an laproscope and it ended up as an open procedure. I had developed adhesions in a matter of weeks. If you have anymore questions let me know.

Blessings,
Sasha
Posted 3/23/2006 3:00 AM (GMT 0)
Mom23,
I too had colonic inertia. I had the transit test done twice. My GI doctor told me since I had this going on for such a long time, I needed to see a surgeon. My colon surgeon requested I have the transit test first. My doctors knew it wasn't in my head. That would really tick me off if they had said that. If you arent happy with your surgeon get another one before you let him or her operate. I will be praying for you.

Blessings,
Sasha
Posted 3/23/2006 12:44 PM (GMT 0)
Sasha,

Are you feeling much better now? Is is worth the risks?  I just wondered how your recovery is going and what can I expect?  I appreciate you guys soooo much for sharing this information.. cool

My thoughts and prayers are with you ,

Tina yeah

Post Edited (tweety110968) : 3/23/2006 5:47:31 AM (GMT-7)

Posted 3/23/2006 5:55 PM (GMT 0)
Hi everyone,
Tammy- colonic neuropathy implies that the nerves weren't firing like they are supposed to, that's why you had the colonic inertia. If they did not take enough of the large intestine out the first time, there is a chance that you may need the rest removed. They leave a short part of sigmoid colon and the rectum, so no j-pouch is needed. J-pouches are for people who need the rectum removed due to ulcerative colitis. It sounds to me that you have colonic inertia and not ulcerative colitis.

Sasha- I'm so glad that you're improving and doing well. It's been a long haul.

Tina- Relax, don't worry so much. If you have a complication, you'll know it. Usually, diarrhea and vomiting sets in. Pain is a pretty good warning sign, too.

I am back at work fulltime now so I'll check back between patients.
Cathy
Posted 3/23/2006 6:12 PM (GMT 0)

 Hi Cathy,

Glad to hear you're back to work full time.  Is everything working good now?  Thanks for all the input , I know I am starting to relax alittle bit now.  It sounds like there has been a lot of success with this procedure for colonic inertia.  I was just trying to get a grasp on everything.  But I definately look forward to feeling better yeah ! 

Thanks

Tweety

Posted 3/24/2006 3:21 AM (GMT 0)
Hi all and welcome to those of you I've not seen before!  Sorry I've been away for a bit (again) but I just closed on my house Friday night and it's been busy since then.

@Cathy-Glad to hear you are doing well enough to be back at work full time.  I am scheduled to return to work on April 3rd myself and am looking forward to getting out of the house, if he actually clears me.  How is your daughter?

@Sasha-How are you doing now?  What were the symptoms you experienced when you developed lesions?

@Sasha & Cathy-the vomiting went away a day after I made my post and all excretory functions have settled down somewhat.  I have had one nausea/vomiting experience since then but am chalking it up to possibly eating something that didn't agree with me.  Number and type of BM's seem to vary from day to day and I haven't noticed any consistent pattern with what I eat as of yet.  I haven't had any 30 trip days since last Monday though, so I guess it has improved. :)  However, the constant aching in my abdominal area has not gone away.  It's not a sharp piercing pain, it's a steady ache that varies in intensity seeming to radiate from my abdominal area to my back in the area of my kidneys, which gets worse if I lay on my side.  I'm also feeling just generally tired and run down.  I think that I may have developed a staph infection and will be calling my doctor tomorrow.  I've had several boil looking areas pop up on my buttocks today and some folliculitis on my stomach. I've also started running a fever of ~101.  I've got an appt with him next Friday but am going to try to push it up if he thinks it is necessary.  If I can't get in to see him tomorrow, under what circumstances should I consider a trip to the ER?  Could a staph infection be related to the other symptoms?

I'm going to go take some ibuprofen and try to get some sleep.  As always, thanks for all of the support and information.

Chris

 

Posted 3/24/2006 7:15 PM (GMT 0)
Heya,

My doctor get me in to see him today and yep, staph infection.  He said that most staph these days were highly resistant to the newer antibiotics and were responding better to the older antibiotics.  So, he gave me a scrip for tetracycline and told me to call him back on Monday if the infection did not appear to be responding.

The aching in my stomach he said was probably due to scar tissue and that with time that should go away.  Also said that time should cure some of the issues I have been having with excretory functions but that I should call him if I experience any further episodes like I had last week.

I have another appt with him next Friday.  I *should* be released for work from that point, provided that we can get rid of this infection.

Chris

Posted 3/25/2006 1:53 AM (GMT 0)
Tweety,  Can you tell me what tests you had to diagnose your colonic inertia?n I passed the defocography, but they did say that my pelvic floor came down too far.  I dont know if that means I cant have the subtotal colectomy.  Does any one know? I will be anxious to finally meet with my dr. when this transist study test is done so he can answer all my questions.  Thanks
Posted 3/25/2006 4:02 PM (GMT 0)

Thanks Kathy,

They had ruled out ulcerative colitis long time ago. My colonic lining was in good condition. The colon was just very dilated and elongated which they were blaming my pregnancies for. My ascending and transverse colon had fallen down then it took a steep hike up to my spleen and turned in towards my spine and looped back down descending towards the sigmoid which had multiple loops. The splenic area looked like the head of an alien so I jokingly called it my "alien baby". I had the pics the doc gave me. The GI doc had a difficult time with the colonoscopy and nearly ran out of scope. The surgeon had said it was the longest floppiest colon he had seen in a long time. I was having lots of mostly diarrhea( no gallbladder) and lots of pain due to the  "kinks". I have about a foot of colon left now. The official DX was colonic dysmotility and then the path report came back with the neuropathy consistent with colonic dysmotility. It is from this report that they told me I may lose the rest of it and would receive the pouch at that time which they estimated to be 10-15 years from now. I just don't really know how they do the pouch and how it works. By the way, I have no pain since the recovery and have 2-4 BM/day. I am about 8 weeks post-op. Life is much much better for me for now. Thank you again. Tammy

Posted 3/25/2006 4:05 PM (GMT 0)
Hi Annette,  I am in the same position as you are.  I am actually starting another transit test tomorrow morning to confirm colonic inertia.  I also have back pain and what I thought was a bladder infection because it seems like I have to constantly pee. It just seems like an all around aching and burning in my lower back and abdomen, plus not going to the bathroom for days and days.  I dont know where you are, but here they seem to just want to keep shoving laxatives at me and its not helping anymore. Did you have a colonoscopy done? were your markers all stuck in the same place? I havent had a colonoscopy and dont really want one either, but I have had EVERY other test you can think of.   I'm hoping more people jump in that have gone through this and answer all my questions.  I wonder if a lot of people are on spring break? In the meantime, I just keep reading and reading here.  keep in touch!
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