Not sure this is where I need to be yet ...

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Carneysh
New Member


Date Joined Mar 2010
Total Posts : 6
   Posted 3/12/2010 1:48 PM (GMT -7)   
I am very post surgery (12 years) for total colonic inertia. Forgive me if I don't remember the medical terms I thought I was healed and done with the poop issue! yeah In September 1998 I had total colectomy with ileorectal anastomosis, I think ... I know, I know I should know every thing that has been done and all that. I think I just wanted to forget it after it worked; which, BTW, it worked very well. I almost didn't make it out of the hospital without a bag, was within 4 hours of being "rushed" back into surgery if I didn't start producing bile; but, my stomach and small intestines decided one surgery was enough thank you (literally I thank them). However, since that time my general overall health has been degenerating at what my husband and I consider a pretty rapid rate. I have had (firmly believe is unrelated) internal demetreosys and complete hysterectomy, pulmonary embolisms in both upper lobes, arterial spasms, chronic sinusitis, and today severe and moderate degenerative disease in my knees, osteo-arthritis in my neck. With my gallbladder removed back in 2001.

Okay, my question is this:
I have been eating what I want, I cannot take vitamins because I didn't process them well to begin with and now alas they don't stay in my system long enough to matter. I am now beginning to have bowel movements just because I stand up and incontinence issues. I can eat and drink fruits no problems or pain. However, after continuing to work for the last 12 years in a high stress field, I am now always exhausted, several trips a month (sometimes week) to the hospital for arterial spasms. And, my body seems to be getting the cold, flu, etc., etc. every two or three weeks. I also have severe insomnia, a huge amount of gas and my hernia is back.

Can removal of part or all of your colon (I still have a 12 cm section for the attachment small intestines just above my rectum) cause an immune problem for the rest of your system? And, does it sound like I am having problems with my gut again in the small intestines or rectum?

It just seems like my body is dying bit by bit and I don't know how to stop it and still be here in 10 or 20 more years to see my great-grandbabies. Any reply would be appreciated.

Pardon the lack of technical terms and spellings, I really didn't think I would need to use them ever again I was doing so good until 2003! Oh, BTW, I am 50 this year and was extremely healthy and active athletically all my life.

reflux surgery May 1998
total colectomy with ileorectal anastomosis September 1998 (well except for that 12 cm :-) )
gallbladder removal February 2001
total hysterectomy, 2003
pulmonary embolisms, March, 2005
arterial spasms, June, 2006

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5695
   Posted 3/12/2010 2:14 PM (GMT -7)   
You have a very complicated health history but I don' t think your problems are related to your colon being removed. Thousands of us don't have colons for many decades and have no health issues. Certainly your continence issues are related to your GI issues, though. Have you thought about investing the time and money for a comprehensive physical at a place such as the Cleveland Clinic in Ohio? Certainly some of your GI issues could be addressed an possibly managed. Sometimes it takes going to the best place in the nation to get the right course of treatment.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 3/12/2010 2:17 PM (GMT -7)   
Carneysh
You work in a high stress field!? You need to get out of that. The exhaustion can't help anything. Apply for SS disability. With your history it should be approved. Can't afford to not work? Sounds like you cannot afford TO work! You need to be able to address your problems full time.

Dan

Carneysh
New Member


Date Joined Mar 2010
Total Posts : 6
   Posted 3/12/2010 2:25 PM (GMT -7)   
Sue,
Thank you for your reply. I would love to look into the possibility of a comprehensive physical such as the Cleveland Clinic but right now my husband and I are sitting in survival mode until our finances are straight ... living in Central Texas as we do it would mean quite an investment for the trip let alone the physical. I trust my current physician, he is absolutely a very thorough doctor and is looking at the overall "big" picture. I just wanted to make sure that what happened years ago, is not what is causing the now :-) !

I am fighting daily through everything I am dealing with ... my faith is great that I am still here after almost not being here several times in my life!

Thank you for listing and replying!

Carneysh
New Member


Date Joined Mar 2010
Total Posts : 6
   Posted 3/12/2010 2:35 PM (GMT -7)   
Dan,
Thank you! Yes, I am applying for SS disability as we speak. When hubby gets home (he remembers more than me right now sometimes because of the exhaustion) we will be going over the second set of paperwork and starting on third so I can concentrate on getting well! We realized when I was found almost comatose several days ago that I was at the breaking point for work and I had already cut back to 3 days a week. I am now on paid leave until the end of April (at the reduced rate required by SS) ... bummer, but the company couldn't afford it anyway and will only work as needed to answer questions.

Thanks,
Deb

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/12/2010 3:51 PM (GMT -7)   
Carneysh
   Sorry to hear about your health declineing.  I too am curious to find out if the colectomy is causing your immune problems.  I read your post and have been searching to find a answer for you and cannot find a thing.  So I guess you better talk to your doc and have some tests run on you to find the answer.
 
I just had a total colectomy on Feb 10 of this year, and I would be devistated if it was true about the ammune system.  I had done a lot of research on my surgery before I had it done and have never seen anything remotely that would suggest such a thing.
 
Hope you get answers and please share when you do.
 
Leslie
Leslie King


Carneysh
New Member


Date Joined Mar 2010
Total Posts : 6
   Posted 3/12/2010 4:06 PM (GMT -7)   
Leslie,
Believe me, I did the same back in 1998. When my final question to the doctor was what happens if I continue to take laxatives the rest of my life (non-surgical option in addition to living on a purely liquid diet), he quietly let me know that because of my family history of cancer I would more than likely end up with cancer [if I remember right I had pre-cancerous polyps removed in one of the zillions of tests]. So my husband and I went about researching as best we could through every source we could and finally determined I would have the surgery. It was awesome, six weeks of minor pain (for me compared to 9 months of he**) ... and I was pooping, eating and done with doctors except for minor stuff that we all live with when we get it. Now I can't seem to get well at all. I just am trying to start the research again into my new problems and trying to determine if my old ones are causing anything. I don't believe they are, other than I will need to get the incontinence and stand up have to bm checked. I figured at some point stuff would start to slide south as gravity takes control. I'm not looking forward to anymore surgeries in my life but it looks like I have at least a few in store (my knees and probably to remove and biopsy that polyp in my sinuses). I just hope none of them will involve my intestines, etc. anymore. That was the worst time of my short (I say short because I have a great deal to do still) life and continue to hope it is going to stay in the past.

Please do not, for goodness sake, regret or worry that this might be the case. I do not in my heart believe that it is. I truly believe I might have a little more in my genetic history that is coming into play that I was not told before my parents passed.

I have read all of your posts and it brings back so, so much. I remember the pain, agony and all the rest like it was yesterday. Believe me when I say there is great light at the end of the tunnel. I have already said prayers for your regulars and everyone else I have read about. Stay strong and trust your body, it will tell you for sure what it needs and doesn't.

Deb yeah

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/12/2010 5:29 PM (GMT -7)   
Deb,  I feel so good compared to a 21 days ago its almost unreal.  I really dont feel in my heart that it has anything to do with your colectomy.  I sure hope that you can find the answers you seek, because it seems like you have been through the ringer.
 
Today I have had the squirts for the first time in a week, I was down to 2 bowl movements a day.  But I am sure its just my bodies way of working through all the trauma, and even if I had the squirts for the rest of my life I will be happy.  As long as what I eat comes out I am good with that.  I feel so much better day by day, even on the bad days I know that I am getting better, so I am happy.
 
Good luck to you and I will continue to search for you also.
 
Leslienono
Leslie King


Carneysh
New Member


Date Joined Mar 2010
Total Posts : 6
   Posted 3/13/2010 8:07 AM (GMT -7)   
Leslie,
Yeah for you! Yes, I love the squirts too! I am so happy for you about feeling better. It gets even better as your body heals!

The only thing I have found so far (with the help of my son) is some studies began between 2007 and 2009 on the long-term effects of my surgery. Other than that, so far nada (which is a good thing).

I'm with you in that I don't think any of this stuff is related; however, my hubby has it in his noggin and I have to help him through this too! I remember when I was taking care of my mom (she had Alzheimer's after a stroke) being a caregiver is never easy.

My research continues!
Deb

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/13/2010 11:29 AM (GMT -7)   
Deb,  yes we just to have to take it each day as it comes.   Still having a lot of surgery pain inside and out....  dang sometimes that incision area and especially the belly button area really hurts but I guess that is to be expected...
 
Find answers so good luck with that...we are all praying for you..
 
Leslie
Leslie King


Carneysh
New Member


Date Joined Mar 2010
Total Posts : 6
   Posted 3/15/2010 8:18 AM (GMT -7)   
Leslie, Yes, the incision area will hurt; but, it will not last forever (yeah) and it is well worth the short time discomfort.

Research so far gives me even more confidence that my troubles now are not related to my colon surgery. I am having to deal with the discomfort from taking medicines that give me the runs ... but that I have lived with and it does not bother me.


Thank you for your prayers ... I also will continue to pray for all of you!
Deb

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/15/2010 12:45 PM (GMT -7)   
Deb,  ya the surgery stuff will pass, just happy to be feeling as good as I do...hope you feel better soon.
 
Love Leslie
Leslie King

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