How long until I feel better? Need advice for post-surgery recovery

This was a reply to a fellow ostomate but I felt if I posted it I might get more answers that might benefit me and give me some perspective. Has anyone or everyone else been here and it does get better? I had a collapsed and damaged J-pouch lying on my pelvic floor. No doctor or surgeon took me seriously and the years and years of my digestive dysfunction caused heavy damage to my entire system. It's been 26 years and I only got the help I needed 2 months ago - not quite. They had to move my surgery up because they discovered I was experiencing organ death and saw that I was a severely sick woman. My surgeon told my significant other I would have been dead in a few more weeks' time if they hadn't seen my test results when they did. I keep thinking it took me a long time to get that sick so maybe there's some better equation of healing and recovery time expected I should just be keeping in mind when I get filled with despair.

I have no confidence left in the system here in the U.S. I've been re-hospitalized 2 times for exhaustion and my doctor is almost a moron. I have tried many other doctors but keep coming back to her because the others are either like Nazis and not only impede my healing but my ability to heal and cause me to regress. At least my moron is a kind moron. I am truly traumatized by my experiences in the medical world. It leaves me hugely challenged to call upon their help or make any necessary trips to the E.R. or into Urgent Care.

I am not able to eat enough yet to create any real energy. Once the calories are used up I get a sensation like being kicked in the chest and need to collapse onto my bed. I am always dehydrated and drink 1-2 bottles of Pedia-Lyte a day, still am dehydrated.

I had low blood pressure before the surgery and it was a real problem, and after surgery, it's dropped to 90/60 or 85/50.

I just can't seem to be able to get any traction. Does anyone have any advice for me? I am at a loss right now and too dehydrated to manufacture tears, but I am filled with them. I have decided to post this. Maybe other ostomates may have something I can actually benefit from.

Signed-

Very low feeling helpless

Kahlo, I can hear the frustration, anger, and sadness in your post. You have been through so much and are feeling weakened and vulnerable right now, with good reason. The truth is, none of us can really tell you how long it will take for you to heal. You must do whatever you need to do to regain your strength and health and leave fighting the medical system for when you are able. I too have felt anger and frustration at the medical profession. I am also hearing that as a common theme on this website. Someday, if there is interest, I will post about a productive way to fight back. Doctors, however, are just human beings, like the rest of us, whether or not they care to admit it.

If you truly feel that your doctor is incompetent, then you need to find a different one. It is helpful that she is kind, but that isn't all you need right now. It isn't easy to look for another doctor when you are feeling so low, and please don't look on doctor rating websites to find one! Those sites are filled with doctors who write their own reviews or who pay monthly fees to the rating website to remove negative comments or otherwise bump up their ratings.

Because you have recently had serious medical issues, your doctor might take your plight more seriously and give more thought to your situation. You need to find out what her plan for your recovery is, and if you have concerns about it, you might need to ask for a second opinion. For now, you just need to get better, and that is likely to happen slowly, given how ill you are. Good luck. Let us know how you are coming along.

It sounds like it would be to your benefit to have your blood drawn regularly (once a month for me). It may indicate deficiencies related to your weakness. I am on TPN due to malabsorption, a result of the ileo. As for how long does it take to feel better....well I am an extreme case as my ileo left me disabled so for me I was counting months not weeks. I am hoping your circumstances are less severe. ORS are helpful too, Oral Rehydration Solution. Hang in there Kahlo; it does get better.

Hi Kahlo

Sounds like you are going through hell. I'm so sorry to hear that what has actually happened to you is malpractice. There has to be a doctor/s somewhere that understands and can help you. With your dehydration, your doctor should be setting you up with weekly blood tests and IV fluids to help you get hydrated and feeling a bit better. I wish you all the best with this battle. Hang in there, you are stronger than you think.

Ange

Hi Kahlo,

Ok, how about some more info? You mentioned there was significant damage to your digestive system.......so let's start there. When they gave you the ileo how much small bowel did they remove......and from where (duodenum, jejunum, ileum)? Was there any damage to your stomach? Liver or kidneys?

What you're saying here is you can't eat enough to get energy.....but your profile says you want to lose weight.......those seem to be at odds with one another.......so are you working with a dietician (not a nutritionist)? You mention that you're dehydrated.......how do you know that? What color is your urine.....and does it change during the course of the day? Torquey mentioned ORS.......did they explain to you how you'd need to change your liquid intake so your small bowel could absorb what your colon used to absorb?

What testing have you had done recently? Reason I ask is because what you describe..........feeling pain when you run out of calories........isn't because you've used up all your calories (the body doesn't work that way), so I suspect something else is not right. Without knowing how much bowel you have left I wouldn't even try to guess why. So shout back with more info and we'll unravel this mystery.

Regards

Bob

Hello KAHLO. (I have posted this reply on your other post, so forgive me for repeating it here, but others might not have seen it there.)

I know from personal experience that low blood pressure can cause all sorts of problems for the 'sufferer' and my experiences with the medical profession make me very cynical as to whether they can do anything at all to help with it. For years I went to doctors asking about my symptoms of fatigue and exhaustion, only to be told that I was probably overworking. On one occasion when I was in hospital, they told me that my blood pressure was dangerously low and then it started to become clear what the problem had been all along. Apparently, there is not much they can do for this condition and it seems that they are more interested in treating people with high blood pressure than low. As for medics and their medication. After my heart bypass operation, they wanted to give me medication to lower my blood pressure; I took one pill and it made me pass out, so I immediately stopped taking it and got myself a blood pressure monitor to try to ascertain what was going on. I now know that my bouts of severe fatigue are directly linked to my low blood pressure, which in itself is worthwhile knowledge. I don't bother the doctors with this problem any longer because I cannot see the point in going to someone if they do not have any constructive solutions. Upon reflection, I think that the job I used to do(where all my colleagues suffered with high blood pressure) was probably beneficial to my health by raising my blood pressure up to what is considered 'normal'.
I have found that sitting, laying or simply doing nothing will only make things worse, so I try to be physically and mentally active, which can be equally exhausting, but in a different way.
Whenever I have problems that seem to be insoluble, I tend to write rhymes to capture the concepts. so below is just one about tiredness and exhaustion.
Best wishes
Bill

I GET TIRED.

My chronic illness makes me tired
and so it’s hard to get inspired.
So what I choose to do instead
is think that I should stay in bed.

But laying there I am inclined
to get more tired in my mind.
Then as that tiredness is built
I start to feel a twang of guilt.

To myself I chide and scoff
there must be people much worse off.
Just look around and you will see
there’s many people worse than me.

But then my mind will once again
focus on my chronic pain.
And whilst I may have empathy
my instinct is to apathy.

Because I do not want to shirk
I’ll force myself to do some work.
That’s in the hope that I’ll get tired
in ways that might be still admired.

So up I get and off I go
and smile, so people will not know
that all that time, way deep inside
my true feelings I will hide.

Because my feelings are repressed
I will tend to get depressed.
But still my duties I’ll fulfil
though I know it makes me ill.

But I get tired of it all
chronic illness, big and small.
And sometimes when it gets too rough
I simply feel I’ve had enough.

                                     B. Withers 2012

Bill

Once again, you have aced it with poetry...cheers!

It will get better with time. Try some home remedies for low BP and ORS as suggested by Torque. Low is better than high, that is the one that is most damaging and the reason why they don't take low as seriously. All doctors make mistakes, they operated on me with those long knives two weeks after I had received four stents in the arteries, with the result that I almost exited this world twice, the ticker stopped, once on the operating table and once two hours after. The reason given was that they did not want the bad cells to spread. Maybe the mistake they made eventually went in my favor! The doctor is now a friend, makes sure I never miss any check-ups either with him or the colonoscopy people. Wishing you an early recovery.

Hi Kahlo, I had my ileo 35 years ago and 2 years ago had a resection surgery. Now my ileo almost works too well. Before surgery, my BP was 118-119 over 80s to low 90s. Now it's high 90s to high 60s, so a change that leaves me lightheaded. My surgeon and cardiologist said to add a pinch of salt to food and water that I sip all day. As for dehydration, I don't drink just one thing. I drink a variety of fluids starting with coffee in the morning, then some milk, Gatorade made from the powder to my taste, different juices especially V-8, occasionally a beer, and that routine works for me. Good luck.