total colectomy!?!

I'm a little numb, in shock, I guess. Saw my GI dr today and he is recommending a total colectomy for my severe, chronic constipation and colonic inertia. To back up and try to make a long story short, I am 6 years post RNY, sub-total gastrectomy, hiatal hernia repair and 5 years post double ventral hernia repair with mesh placement. The last 2 years, I have developed severe, chronic IBS with constipation, unresponsive to diet changes and multiple prescription meds, as well as colonic inertia. To make matters worse, I am on opioids for pain control of my severe back and neck pain (a patch as well as a pill). I have daily nausea and heaving (seldom actually vomit, d/t hiatal hernia repair), struggle with malabsorption, dehydration and abdominal pain so severe that I will be on the floor in tears several times a week. I have seen several local GI doctors and I'm now going to be referred to a large center in Dallas (awaiting the referral). Has anyone else had similar issues and what has helped? Can anyone recommend a good GI clinic in Texas (I was thinking maybe UTSW or Baylor). The last thing I want is more surgery, but I'm not sure what else can be done. Help and advice please!!!

I am so sorry you are dealing with this!

Wow, I am so sorry you are dealing with this nightmare.

It sounds like you have a good medical team- at least you are being treated as best they know how.

Probiotics haven't helped you at all? Allergy tests? SIBO?

It is such a tricky balance for me personally to stay regular - stool softeners, fiber, dietary choices, water intake, calcium and magnesium etc. I don;t have any advice except to say I am sorry you are dealing with all of this. I have had multiple hernias and I know what a drag that can be to deal with and pain meds, while necessary, make things worse. I have found that eating up to 8 times a day (tiny portions) helps with nausea and that changing the temperature of the liquid (luke warm, hot or super chilly) make a huge difference with my own issues of dehydration. Maybe change things up a bit while you wait for your medical team to respond?

I wish you well - wish I could help more :/

I've tried Multiple different probiotics. I was also treated for bacteria overgrowth in my intestines. I already eat tiny portions but because of the nausea, can only eat a couple times a day and do good to get in 10-12 oz of water a day because of the nausea. I'm on zofran and marinol for the nausea. I take 1,500 mg a day of magnesium , which is more than the max of 1,200 mg my doctors have said to take.

What is SIBO? I should know but can't think of it...

thanks for responding!

SIBO - Small Intestinal Bacterial Overgrowth. H.A.L.A is a longtime Vet on this site and my chime in if you are lucky. She will likely tell you to google FODMAP. She suffers from multiple food allergies and SIBO. She may have some good insight or you can look her up and her posts.

The narcotics aren't helping in terms of constipation. But I doubt that is news to your medical team.

Honestly, when I was taking morphine all day long to deal with my hernia repairs and complications the only thing that worked for me was upping my stool softner to 7 gel caps a night and drinking 5 liters of water a day. I still drink between 4 and 7 liters a day. It helps.

I wish I had more to offer - keep us posted. This is helpful for all of us....

Right before my hernia surgery (incarcerated bowel that was nearly to the point of strangulation and emergency surgery plus 2 more) -- I was so backed up that even the surgical prep couldn't clear me. After surgery, the pain meds made it feel like my lower half was filled with cement.

Like Ashley -- I took 7 to 10 stool softeners a day, PLUS miralax in several capfuls, AND Magnesium Oxide with more than double the amount of water recommended.

I would hazard a guess that it's the opioids that are causing or exacerbating this. I would not undergo this surgery unless they had been eliminated to check it's not that!

Chances are you'll find you are taken off them at some point anyway, what with the opioid crisis and all, so it might be opportune to try alternative methods of pain relief before they cut you off anyway

I know several people , who have had good result with cbd oil for both pain and constipation issues.. solves both...as will coming off opoids. NNot an option for DH because of laws here. the withdrawal needs to be done over several months... insurance will take you off in a single month when they refuse to fill RX.They do not care if you are in Horrific pain or die from withdrawals.

I see so many people struggling to find alternatives now because they've just been cut off with no notice.

Thankfully, I've never needed opioids other than a day of surgery, but if i were a long term user the thought of being cut off would definitely force me to find an alternative before it happens - and it will happen!

I know people with prescriptions hate being called addicts, but this is how opioid users become heroin addicts - their supply suddenly dries up!

THe problem is they are treating people who are in continual intractable pain as "just addicts", Not as people who have pain and need help to control the pain so they can be productive. I have a family member I have watched for years with this issue.

Those who must take medication for blood pressure are Dependent on blood pressure meds. People in intractable pain are Dependent on meds to control their pain..Note.. it does not totally relieve and give someone pain free days,just some time with a more tolerable level of pain..

The difference is: addicts take pain meds to get high and are incapacitated by them. Chronic Pain patients take medications and they are able to mow the yard, walk the dog, cook a meal, spend time with family...and almost no one is aware they have a chronic health issue and are in pain for many hours each day- even taking their medications on a prescribed schedule.

There are a few natural supplements that help nerve pain, Most effective are not legal in Tn, because some kid bought something off the street to get high on. kratom , MJ and cbd all work on nerve pain. ..thye are legal in some places. There are some legal ones, not as strong but give some relief.... You will have to do your own research and trials. Knowing what works for pain will be a good thing to know.

. Legislation will not fix the problem. The opioid prescription death rates have been inflated with ALL illegal drug use added in. Most opioid drug deaths are from illegally obtained drugs.

So their answer is: to make it where people in pain can no longer get their pain relief meds.

When one must go to a pian clinic and obtain meds and Insurance can stop you from filling medications a specialist has prescribed... your Doctor( who has a relationship and has examined and done evaluations including EMG's) is not in charge of your health, but the Insurance company.