Reversal Pain - Normal at 3 Months?

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CSue
Oct 03, 2016 5:22 am

Hi,

I had my colostomy reversed on July 1, 2016. Other than having an obstruction after, things have been pretty calm health-wise until now.

I am now having some pretty weird pain where my stoma was. Kind of a burning, stinging pain. At three months out, is this normal? I would love to hear your reversal story and to know it will get better....and just how long did it take to get to feeling normal again?

In total, I have had three small bowel obstructions since my first surgery for colon cancer in Dec. I am so scared of having another. Talk about mental duress! I think I may have bowel PTSD. I'm not making light of PTSD, I really think I have it. The NG tube was pure trauma, every time. Now when I eat, I am worried I am just one hour away from needing to go to the ER. Any words of wisdom on how to deal with the paranoia?

Thanks

Bill
Oct 03, 2016 6:23 am

Hello CSue.  Thank you so much for posting your interestng problems and I hope you get lots of replies. Unfortunately, many people who have reversals which are successful, no longer have a need for the support of a site like this one and only pop in from time to time to see what's going on.

Three months is really no time at all in the healing process for these types of operations and many of the weird pains and sensations will be due to that healing process. However, the advice must be that if you feel worried about it, whatever 'it' is, then you should dseek professional advice, if only to put your mind at rest. That would be the number one priority because if there is something physically wrong, no amount of 'thinking' about it will put it right.

When you talk about PTSD and paranoia, these are things where I do have some small experience so I will try to make some helpful comments.

Firstly, I have absolutely no doubt that the acute trauma of having these sorts of conditions, going through the operations and having all the associated worry and stress can, and does, cause the condition that has become known as Post Traumatic Stress Disorder. Personally I would say that some can also suffer with 'pre- traumatic stress' as well but that's a different story. The 'Disorder' element  is when the condition goes beyond a very hazy line between what is expected before the person gets better, resulting in a need for outside intervention to bring the person back to what could loosely be called 'normality'.

In all my years of working with people who have been labelled as 'paranoid'. Once the background is fully understood, I have yet to come across anyone who has not had good reason to have some degree of paranoia. --As the saying goes "Just because you're paranoid, it doesn't mean they are not out to get you!" The term paranoia is usually used in psychiatric and psychological  circles to describe those who allow their emotions and sensitivities to develop to the extent that they get out of hand and adversely affect their daily lives. There are a miriad of different ways that people adopt to control and manage their sensitivities and emotions from yoga, exercise/sport,hobbies, sex, concentration, education, distraction, self-harm,and many others. I use writing poetry or prose to achieve an equilibrium when things affect me too much that I need to distance myself from the source of the problem. 

As with so many things in life, there is no single answer to this problem that suits everybody. We each need to figure out what distracts us best and helps us to move on and leave the crap behind. I happen to be a firm believer in 'Self- Organised' living and reflecting, so I rarely seek help from others. However, I have met many, many people who cannot learn by themselves, of their own volition and need someone else by their side as they find solutions to whatever problems life throws at them. If you are such a person, there is no disgrace in recognising this need because recognition is one of the first steps to putting things right.

The only thing I would say about that approach, is that you need to be very careful who you put your trust in to help you in times of need. There are lots of people out there,(some of them with impressive qualifications) who are on the look out for vulnerable people so that they can relieve them of their money, without really helping them with the underlying problem. These despicable people will often cause more trauma than they purport to be helping with.

One technique that I have used that proved to be very helpful with certain people, was to get them to keep a diary of what they were worried about. This enabled us to work out the percentage of times that the focus of worry either happened or did not happen in reality.  I used to point out that the level of 'significance' is usually set at 5%. Anything under that, could and should be used as an indicator that whatever they were worrying about was most unlikely to happen. This approach is a bit like weather forcasting, in that it helps to give people confidence in thinking that rthey are worrying unnecessarily. However, it doesn't necessarily stop it raining unpredictably!

Perhaps I've said enough. I hope you find your way of managing these thougths and emotions sot hat you control them, rather than let them control you.

Best wishes

Bill       

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Bill
Oct 03, 2016 6:26 am

Oh! I forgot to say how much I enjoyed your profile picture.

iMacG5
Oct 03, 2016 8:09 pm

Hey Csue, unlike Bill, the closest I got to understanding the human brain is Psyc 101. I know even less about my own brain or wherever my feelings come from. I'm pretty sure I satisfy the definition of “human” but I'm really only one in about 7.4 billion. So are you; so is Bill. But we do have some stuff in common. We were traumatized. Maybe it was when the doctor said “You have Cancer”. Maybe it was when we were told a bag would have to hang on our belly maybe forever. I don't think we deliberately entertain memories of NG tubes, the smell of ICU, the fear while anticipating surgery or any of the crap we might have been subjected to but it happened, we experienced it and handled it somehow. Are we left with scars? I think so but most of us work to heal completely and never have to go back. A lot of the healing comes from sharing with each other the things we can relate to and find we're not so completely different. We actually learn, mostly from each other, that we're pretty normal. PTSD is real. Anxiety and depression are real. The doctors usually don't tell us about those parts of our journey but they happen.

My MAO prognosis for you is between good and great. Continue sharing with us and we'll be relying on you for help down the road.

Respectfully,

Mike

Ewesful
Oct 05, 2016 6:10 pm

You are most likely getting pain from adhesions --- there is a fabric the surgeons can use to prevent them which you need to request in the future. Don't panic - let things go for awhile and see if you can get your head around it....

 

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BeYourOwnHero
Oct 25, 2016 12:41 am

I agree with the whole PTSD, it's all very traumatic, in every sense of the word.

I wanted to comment about the NG tube, they are the worst. My doctor put in a Mic-Key Tube which basically looks like the plastic thing on a beach ball. I guess it's a pediatric feeding tube device but he's using it to decompress the abdomen and it's fantastic. It will hopefully keep any and all NG tubes far, far away from me with the Mic-Key. I can suction it if I need to and medication can go right in too. If my ileostomy does get reversed, I'm keeping the Mic-Key tube and I'm happy about it. I understand the paranoia, I told my doctor never again will I get an NG tube and this was his brilliant solution. Maybe it could work for you too.