Surgeon warned me

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Subzeromambo
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Date Joined Sep 2009
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   Posted 7/16/2011 10:25 PM (GMT -6)   
I have been having a lot of trouble about feeling sad and not being able to sleep without a night light. Surgeon suggested this might happen due to visually traumatic blood loss and my heart stopping. Has anyone else experienced this? I am very glad to be alive but my emotions seem to be all over the place.
Diagnosed 1987 with lower left colitis. Hospitalized often. Mega toxic pan colitis Dec. 1999. Perforated colon and total colectomy April 2011.

2b ColonFree
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Date Joined Nov 2008
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   Posted 7/17/2011 2:26 AM (GMT -6)   
hi Sub, i'm sorry for all you've been through. i also lost a lot of blood after my colectomy and needed 2 transfusions. i don't know if that exactly was the reason, but i also was VERY emotional after my surgeries. i simply cried day AND night NONSTOP! it was overwhelming... it took me some time, but it gets better. i think it also helps to talk to someone profetional, just for a while after surgery. it can really help a lot. hope you feel better soon. wish you all the best!
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 7/17/2011 7:08 AM (GMT -6)   
Definitely speak with a professional and possibly a very mild antidepressant to start with to take the edge off and see it if helps.

Everyone handles and accepts this major event in their life differently. There is no right or wrong way. You need some help and accept it to help you cope.

Good Luck!!!!
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

stripey
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Date Joined Feb 2011
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   Posted 7/17/2011 7:15 AM (GMT -6)   
I would see if your GP can refer you to someone as I always have to have blood transfusions after every surgery but never experienced those sort of feelings afterwards. I'm just relieved that the surgery has been done to sort out whatever problems I had been having and so can't wait to heal so I can get back to health again.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

answers4me2
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Date Joined Dec 2008
Total Posts : 1325
   Posted 7/17/2011 9:08 AM (GMT -6)   
I did not have a significant blood loss, but I am suffering with extreme sadness and depression since my 1 surgery that turned into 4 surgeries. Maybe it is because we now truly know we are not invincible. I don't know, but I do know that I am ready for this depression to subside. Good luck and know you are not alone. Tracy

summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 7/17/2011 10:19 AM (GMT -6)   
well i would say it's perfectly normal to be emotional after dying briefly. I mean, i don't see how anyone couldn't. I have heard that losing an organ you go through the stages of grief, and that makes sense to me.
if it's really bad try an antidepressant or some sleeping pills, and you know what there is nothing wrong with sleeping with a night light i have always slept with the light on!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 7/17/2011 1:41 PM (GMT -6)   
Subzero,

After 5 years I STILL have the depression. But my story is VERY DIFFERENT. Upshot is 2 surgeons did removal of sigmoid colon (was told I had an internal prolapse of sigmoid) and "correction" of internal prolapses I NEVER HAD! And many I did not consent to. The procedures I did consent to were based on wrong info given to me by 3 surgeons and 2 radiologists. As result of that surgery, I permanently lost the use of my colon and rectum and for 7 months the use of my small intestine. Lost 1/4 of my body weight due to ongoing small bowel obstructions from adhesions. Anastomosis (join of colon ends where sigmoid was removed failed and colon scarred in to diameter of a pencil) No f/u from my original surgeon though he dx'd the failed anastomosis on xray. He faxed me 5 faxes saying he would "DO nothing!" Had to see 11 surgeons at 7 hospitals over 13 months before full extent of damage could be realized. THEN only one would do what could save me, cutting of very dense small bowel adhesions and permanent ileostomy. Lucky I found this one doc to do the best that could be done for me and very lucky to be alive and have travelled a lot since this and have taken up ballroom dancing days I feel like it.

Residual I have chronic fatigue, vertigo, very heat sensitive, and have had some ileostomy diarrhea and issues trying to get impacted disuse colon mucous out of my rectum. BUT if this is all I get result of all this, I WILL BE LUCKY!!!

The worst part of my scenario is that my whole experience was caused by original misdiagnosis of a rectal empyting difficulty issue (But I WAS MOVING STOOL RECTALLY AND A NORMAL AMOUNT DAILY), then original surgery done that did not need to be on retrospective review of the original scan, then no f'u to complications. I do have a medmal case going on that certainly looks promising. BUT nothing can undo all of this. With all I have learned of the "busine$$ of medicine" it truly scares me. We all have to know who we are dealing with and be sure they are in medicine for the right reasons, such as the doc who saved my life is. I'm in counseling for post-traumatic stress and am making FULL use of every day, life can be short, so we all need to go for it.

I will never be the same because now I know too much. It took me two years, but I figured out my own case even. VERY scary to know that much. THEN found out that the original surgeons did not even send my needlessly removed sigmoid colon to the lab at the hospital. Instead what arrived at the lab with my name on it was a length of what from the path report evidently (according to reviewers) and what I have found to be circumferences and diameter of small bowel v.s. sigmoid colon, was small bowel instead of sigmoid colon. THEN in the op report no mention was made of removal of any of my small bowel which would not have been part of the original surgery anyway. I'm like What?????? Violation of tissue disposal laws or what? Then we found out the hospital billed my ins co for $26,000 for the original surgery and my ins had a contract with that hospital to pay them $44,000 for removals of sigmoid colons (apparently needed or not.) Ins. fraud? I just have to wonder.

So for very different reasons, I can relate to how you feel. Emotional stuff gets better with time, then what becomes the major focus is that we stay OK the way we are, find out what to do to care best for ourselves, then make good use of our time. We are still all here thus far despite some incredibly awful experiences. We have to all figure we have a purpose and more life to live.

I wish you all the best, and just needed to share my REALLY BIZARRE story. I have all the records, etc to back everything up. As I learned enough to put together my own case, I just was in disbelief. Maybe it's worse to know in cases like mine, but there must be a greater purpose for that too. Best wishes,
Rosemary

Post Edited (esoR) : 7/17/2011 1:45:15 PM (GMT-6)


esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 7/17/2011 2:10 PM (GMT -6)   
Subzero,

I forgot to add to the above post that prior to dealing with my original surgeons, I did check them out with the state medical board and was told by the rep on the phone, no claims with the board and no suits in my response to asking.

After my whole ordeal, when I called the Board back and asked if the original surgeons had claims and suits, I was told they had between 6 and 8 combined claims and suits....... a number of them PRIOR to my surgery. I did send my complaints to the Board and they are now part of the original surgeons' file and copies (without my name) will be given out if prospective patients know to enquire. The Board has now changed their method of giving out this information, and now one central person does it rather than just relying on the rep you get on the phone. SO, I have to hope my experience went for something, for at least making public information accurate when consumers call to ask. The original surgeons are now up to a combined total of 13 claims with the Board and medmal suits. I never knew it but medmal suits are also public information. They can easily be found, most often, by going to the court house of the city in which the doc practices and requesting copies of suits from the civil superior court clerk's office. With HIPPA laws and such, I never would have imagined medmal suits being public information. AND WHO even thinks they NEED to do this type of research even if they knew how. Somehow we just trust our docs.

My experience certainly is not typical nor do even I view other docs in this light. MOST docs are seriously trying to make accurate diagnoses, honestly planning surgery in the patient's best interest as accurately as they can, then do their best work as did all the other docs who helped me out after my injuries. BUT scary learning! Rosemary

Subzeromambo
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Date Joined Sep 2009
Total Posts : 1143
   Posted 7/17/2011 10:37 PM (GMT -6)   
Hodaya, answers4me2, Tracy, Summerstorm,
Another UC wife and stripey,
Your kind words mean a lot to me. It is good to know that I am not the only one who went through emotional swings. Doctors in the hospital were telling me I was going home right up until my intestine broke apart. Two GIs even told me that a colectomy would be optional for me in the coming ten years.
I think my sadness is probably due to the current reality vs my expectations before the surgery. Surgery was the last thing I expected. Most of the time I am delighted to be alive, but when I am tired or in pain the sadness can be strong.
I am probably also being impatient to be back to "normal." Lol!
Another UC wife and stripey,
I confess I do not have a lot of faith in professional psychiatrists or psychologists. My husband and two of our children have adhd. We did not have positive experiences with any of the professionals. The professionals were too quick to assume that an rx was a panacea. We found other solutions that have worked for the long term. Thank you for your suggestions though.
Szm
Diagnosed 1987 with lower left colitis. Hospitalized often. Mega toxic pan colitis Dec. 1999. Perforated colon and total colectomy April 2011.

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 7/18/2011 12:54 AM (GMT -6)   
i know what you mean about not having faith in professional psychiatrists and psychologists, i feel the exact same way about most of them... actually maybe 99% of them.... i never felt it contributed me in any way. only after surgery i went to one and she was really good. she really knew how reach me and get the best out of me. but unfortunately i went for only 3 meetings with her and then couldn't go any more, cuz i started working and she works only once a week and only for few hours in the morning. now that i'm not working, i've considered asking if i can go back to her (she works through the public health care only). oh well.. will see.

but my point is that there are good ones out there, they're just hard to find :/
 
but in any case, it all does get better with time. i promise.

Subzeromambo
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Date Joined Sep 2009
Total Posts : 1143
   Posted 7/19/2011 12:11 PM (GMT -6)   
Rosemary,
Thank you for all of the information. You have been through some very scary experiences. I appreciate your research and making sure that other people do not have the same experiences.
We have four surgeons on my street. After a phone call from my husband, they all called the surgeon they wanted to operate on me. Because it was an emergency he had to drop everything and come immediately. I am very lucky they advocated for me. My surgeon was the one all of them said they would choose for a family member or themselves.
The hospital GI was the terrible one. I did file a complaint with the hospital and received a sincere apology from the head of that department. I suspect that my intestine was so diseased even a superb doctor would not have been able to do anything differently. I still don't understand why my regular GI wasn't there but I have moved on to a better GI and don't want to dwell too much on it. As you said life is just too short not to make the best of each day.
I hope you are pain free very soon!
Szm

esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 7/19/2011 12:19 PM (GMT -6)   
Thanks SubZ. You were lucky you had 4 surgeons on your street advocating for you. WHEW! You lucked out. Thanks for well wishes, Rosemary

Subzeromambo
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Date Joined Sep 2009
Total Posts : 1143
   Posted 7/19/2011 12:23 PM (GMT -6)   
2b ColonFree,
Thank you for your supportive and encouraging post. I keep having to remind myself I am getting better every week. All of the posts advising that it takes a longer time to recover from this experience than other surgeries have been very helpful.
What type of specialist was the one you liked?

Subzeromambo
Veteran Member


Date Joined Sep 2009
Total Posts : 1143
   Posted 7/19/2011 12:41 PM (GMT -6)   
Ron,
Thank you for your wonderful post. Laughter also helps me get through the pain except that yesterday I laughed so hard at a joke my youngest son told that my abdominal muscles seized up. He felt terrible but as I told him, pain from laughter is better than any other type of pain.
Fondly,
Cynthia

stripey
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Date Joined Feb 2011
Total Posts : 1059
   Posted 7/19/2011 3:40 PM (GMT -6)   
Szm, I have to be honest and say that I have never held much stock in the mental health professionals but many people find help from talking to a trained doctor/nurse who specialises in depression/anxiety. Each to their own, if it works then that is what matters. Sometimes just getting it all off your chest about how frustrated/angry/upset etc can make a huge difference.

Hope you find something that helps.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.
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