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Advice on possible elective colostomy

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Mon Sep 21, 2020 9:57 am

Hi Guys

 

Thanks for all of the info you all give to others!

 

I had diverticulits which ruptured my colon back in April 2020.  I had a foot of my colon remove and had a colostomy for 3 months.  I had a reversal of my ostomy at the end of June 2020.  Since my second surgery I have had constant diarrhea (4-8x/day) with moderate to severe abdominal pain.  I was diagnosed with C. Diff while in the hospital for the reversal surgery.  I have been on antibiotics twice (Vanco for 10 days each time).  I am starting a new antibiotic today for 10 days (Dificid).  I have seen Infectious disease specialist who told me that this may be as good as I get and that he is not sure the diarrhea I am having is related to the C Diff infection.  

My mother has diverticulits like symptoms and is nearly bedridden with illness when it flares up.  She has severe abdominal pain, bloating and diarrhea for 10 days in a row then will feel better for a couple of days then flares up again. She has had about 8 inches of her colon removed also.  

I am not sure that I can deal with this for the rest of my life.  I have an appointment with a GI specialist after my third round of antibiotics is done.  I want to explore all of my options but I am strongly considering returning to the Colostomy.  I had few problems while I had my colostomy, besides the mild inconvenience, life was better.

I know that we are all different but I just wanted advice from people with more experience with this issue.  I don't mind being an ostomate to feel a little more normal.

Thanks in advance!

Footie

Mon Sep 21, 2020 11:39 am

Hello Footie97. 

It is such a personal thing to consider elective surgery, that many of us might be reluctant to give advice on the subject (me included). However, after many years of pain/discomfort and incontinence, I elected to have a permanent colostomy and, whist I don't really 'want' one, it has changed my previous life for the better, and I have not looked back to think that I would want to go back to the life I was leading before. 

The best I can describe it is: I had to weigh in the balance what my life was like and what were the chances of it getting better, with what it might be like with a colostomy, which would be much easier to 'manage' as well as easing the pain and discomfort. I do not regret choosing the colostomy option, even though I would still prefer to be 'normal' without it.  Life is what you make it and I can think of many worse things than having to manage a colostomy for the rest of my life 

Best wishes in your own decision making. 

Bill 

Mon Sep 21, 2020 11:44 am
Bill wrote:

Hello Footie97. 

It is such a personal thing to consider elective surgery, that many of us might be reluctant to give advice on the subject (me included). However, after many years of pain/discomfort and incontinence, I elected to have a permanent colostomy and, whist I don't really 'want' one, it has changed my previous life for the better, and I have not looked back to think that I would want to go back to the life I was leading before. 

The best I can describe it is: I had to weigh in the balance what my life was like and what were the chances of it getting better, with what it might be like with a colostomy, which would be much easier to 'manage' as well as easing the pain and discomfort. I do not regret choosing the colostomy option, even though I would still prefer to be 'normal' without it.  Life is what you make it and I can think of many worse things than having to manage a colostomy for the rest of my life 

Best wishes in your own decision making. 

Bill 

Thank you for your input, Bill

Mon Sep 21, 2020 3:34 pm

Hi Footie,

The symptoms you are describing sound like LARS (lower abdominal resection syndrome). Has anyone mentioned that to you? If it is, you might want to hang in there for awhile longer; it may eventually resolve itself. There is lots of information on the internet about it; you can read up on it, and then you have more information to help you make a decision. A friend of mine suffered with this after her ileo reversal - she told me it was 2 years until she could confidently go back to work. However, she ultimately was able to resume a normal life. Good luck with your decision.

 

Laurie

Mon Sep 21, 2020 3:44 pm
Padfoot wrote:

Hi Footie,

The symptoms you are describing sound like LARS (lower abdominal resection syndrome). Has anyone mentioned that to you? If it is, you might want to hang in there for awhile longer; it may eventually resolve itself. There is lots of information on the internet about it; you can read up on it, and then you have more information to help you make a decision. A friend of mine suffered with this after her ileo reversal - she told me it was 2 years until she could confidently go back to work. However, she ultimately was able to resume a normal life. Good luck with your decision.

 

Laurie

 

Laurie,
Thanks for the information on LARS, I will do research on it and make an informed decision!  I am lucky in that I have been back at work since 3 weeks post reversal but it is not a normal life at present.

 

Thanks again for the advice!

footie 

Mon Sep 21, 2020 3:55 pm
Footie97 wrote:
Padfoot wrote:

Hi Footie,

The symptoms you are describing sound like LARS (lower abdominal resection syndrome). Has anyone mentioned that to you? If it is, you might want to hang in there for awhile longer; it may eventually resolve itself. There is lots of information on the internet about it; you can read up on it, and then you have more information to help you make a decision. A friend of mine suffered with this after her ileo reversal - she told me it was 2 years until she could confidently go back to work. However, she ultimately was able to resume a normal life. Good luck with your decision.

 

Laurie

 

Laurie,
Thanks for the information on LARS, I will do research on it and make an informed decision!  I am lucky in that I have been back at work since 3 weeks post reversal but it is not a normal life at present.

 

Thanks again for the advice!

footie 

Sorry - I got the acronym wrong! It is Low Anterior Resection Syndrome (not abdominal).

Laurie

Mon Sep 21, 2020 5:29 pm

Hi Footie,  Mine is a similar position to yours right now as I have to decide to stay with the colostomy I have now or go with an ileostomy which may or may not improve my quality of life.  You have one advantage in that you already know how your life was with the colostomy.  It sounds like you have a little more research to do and possibly more options to weigh, but ultimately it's about quality of life in my mind.  Good luck with your decision and let us know how things go.

Best wishes,

Terry

Tue Sep 22, 2020 6:05 am
delgrl525 wrote:

Hi Footie,  Mine is a similar position to yours right now as I have to decide to stay with the colostomy I have now or go with an ileostomy which may or may not improve my quality of life.  You have one advantage in that you already know how your life was with the colostomy.  It sounds like you have a little more research to do and possibly more options to weigh, but ultimately it's about quality of life in my mind.  Good luck with your decision and let us know how things go.

Best wishes,

Terry


Terry

you are correct, quality of life is the driving force behind all of our decisions.  I wish you well with your decision, hopefully your choice will have a positive impact on your life!

good luck, 

footie

Tue Sep 22, 2020 11:03 am

I have had an ileostomy now for 4 months and reversal is an option if everything checks out but I really don't want to go through surgery again. I think I can learn to live with this just fine except I am now getting a hernia beneath the stoma. Am hoping it will be manageable long term. I am back working every day and the bag allows me to venture further from home/bathroom than I ever could before. I am inclined to not have the reversal even if I can. Good luck with your decision-making process!

Tue Sep 22, 2020 11:51 am
Old Bud wrote:

I have had an ileostomy now for 4 months and reversal is an option if everything checks out but I really don't want to go through surgery again. I think I can learn to live with this just fine except I am now getting a hernia beneath the stoma. Am hoping it will be manageable long term. I am back working every day and the bag allows me to venture further from home/bathroom than I ever could before. I am inclined to not have the reversal even if I can. Good luck with your decision-making process!


Bud

I had my colostomy for 3 months and I had a LONG stay in the hospital after reversal, 12 days in with 6 in ICU.  I certainly understand your concerns with possible reversal surgery.  I had a harder recovery from the reversal than I did when I had the colon resection.  If I could get my bathroom habits under control, I would be very happy with the reversal but for the moment I am not sure if it was the right move! 

I was lucky not to develop a hernia after surgery either time as I went back to work within 3 weeks after both surgeries.  I have an active job but not much lifting so I think that helped.

Good luck with your health and decision. 

Footie

Tue Sep 22, 2020 12:42 pm
Old Bud wrote:

I have had an ileostomy now for 4 months and reversal is an option if everything checks out but I really don't want to go through surgery again. I think I can learn to live with this just fine except I am now getting a hernia beneath the stoma. Am hoping it will be manageable long term. I am back working every day and the bag allows me to venture further from home/bathroom than I ever could before. I am inclined to not have the reversal even if I can. Good luck with your decision-making process!


I chose not to have reversal because at least with

the bag I could avoid the many "accidents" I had in public. Quality of life is most important

Tue Sep 22, 2020 12:48 pm
estrogen wrote:
Old Bud wrote:

I have had an ileostomy now for 4 months and reversal is an option if everything checks out but I really don't want to go through surgery again. I think I can learn to live with this just fine except I am now getting a hernia beneath the stoma. Am hoping it will be manageable long term. I am back working every day and the bag allows me to venture further from home/bathroom than I ever could before. I am inclined to not have the reversal even if I can. Good luck with your decision-making process!


I chose not to have reversal because at least with

the bag I could avoid the many "accidents" I had in public. Quality of life is most important

Agree 100%, I guess I am lucky I have only had 2 accidents.  Luckily both have happened at home.  I do always carry an emergency backpack with cloths wipes etc!  I am glad you made the right choice for you!
Stay healthy estrogen!

Footie

Nurse
Tue Sep 22, 2020 3:18 pm

As an RN for 40 years I took care of many, many people patients with colostomies/iliostomies. Last December I had a perforated colon and underwent a colon resection ending up With a temporary colostomy. 25–30 years prior to that I had nothing but problems with my colon, constant constipation, Cramping, abdominal pain, all leading up to hours of diarrhea. I always thought that a colostomy/ileostomy would be the worst thing in the world to have to deal with but after having my surgery in December last year and after figuring out the correct appliance, routine, clothing, etc., I have decided that it is not so bad after all. I did name her Arsy (pain in the arse) but now she isn't a pain at all. She's my bff and I have decided that my life is much fuller with her than it was without her. There's nothing that I cannot do with her and I no longer have all the discomfort. Is it aggravating to have her, yes but all in all I'm much happier with her then I was without.  


_________________
RN, BHA
Sun Sep 27, 2020 9:51 pm

Hi Footie,

 Sorry for the late reply.........I've been away for awhile.  Maybe I missed it, but shouldn't you first find some quality Docs that can tell you exactly why you have the diarrhea and abdominal pain before you even start to entertain such a decision?  Nowadays your Gastro should be able to positively identify what's going on that's causing your problems, and whether it's C-Diff related or being caused by something else.  If it were me I'd want to know WHY before I made any kind of decision regarding an elective ostomy of any sort.  It would really suck if you had the ostomy and the problems continued, right?  Just thinking out loud.  

regards,

bob

Mon Sep 28, 2020 5:09 am
w30bob wrote:

Hi Footie,

 Sorry for the late reply.........I've been away for awhile.  Maybe I missed it, but shouldn't you first find some quality Docs that can tell you exactly why you have the diarrhea and abdominal pain before you even start to entertain such a decision?  Nowadays your Gastro should be able to positively identify what's going on that's causing your problems, and whether it's C-Diff related or being caused by something else.  If it were me I'd want to know WHY before I made any kind of decision regarding an elective ostomy of any sort.  It would really suck if you had the ostomy and the problems continued, right?  Just thinking out loud.  

regards,

bob


Thanks for your advice Bob!  I have an appointment with ID this week and GI a few days later to do some more investigating on the cause(s) of my gi symptoms.   I have "backed away from the cliff" after some sole searching and am focused on finding out why so I can make an informed decision.   Hopefully these next appointments will give me positive direction!

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