Desperate to avoid colostomy/urostomy.

[RojasPuraVida]

Hi everyone,

I was left with bladder control problems after I had a car accident and subsequent spinal fusion surgery in 2013. I am only U-IC. I've tried so many different painkillers since to deal with chronic pain, none of which have ever really worked too well. I've been taking gabapentin for the past 3 years or so which hasn't really ever worked very well, the pain is less if I take it compared to if I don't but it's still there and really bad.

I've now been prescribed amitriptyline a few weeks ago and for the first time in years, I've been in much less pain, I can be more active and more comfortable which is amazing however it's caused some pretty nasty constipation and cramps.

The pharmacist told me to take movicol which didn't work, I then tried fybogel which also didn't work and now I've seen my doctor and was prescribed biascodyl tablets (5mg x2 per day) which stops the constipation, but works too well.

I eat a high fibre diet habitually (I'm from the Mediterranean so bread/fruit/nuts are staples for me) and I've always been pretty 'regular' bowel wise if that makes sense.

I've now got really bad urgency and until I actually had a fecal accident this evening driving home from work, an absolutely horrible experience and the first time I've had a fecal accident since being a toddler.

I don't want to stop taking the first painkiller to actually work, but I also don't like the effects that the tramadol is causing. I really don't want to be in the position where I'm virtually F-IC as well and everything that brings with it.

I had a telephone consultation with my doctor again today and was offered the same thing they've been offering since my accident; a colostomy/urostomy. Something I am desperate to avoid at all costs.

Now, I can either stop taking the amitriptyline and be in more pain or; accept my fate and either manage the fecal urgency or have the surgery I've been avoiding.

Does anyone have any tips/ideas/suggestions?

 

[Bigbabybret]

Well, i take a lot of meds myself, and the issues that go along with them, and try to take as little as i need to.

My first suggestion would be to cut down the bisacot down by 1/2 and see if that might help with the urgency and alike.

i take that when needed, but prefer to use just saline enema if at all possible, and that works for me most the time.

But of course let/talk to your dr, but if the bisacot is doing too good taking less might be the ticket.

I myself stay FAR FAR away from the knife as much as i can, and surgery is the LAST thing I will do. Bu that is just me.

 

[shannara6767]

Biggest thing is to see if what you are taking is a stimulant or softener as they work different. A stimulant irritates the bowels forcing everything out and for me causes cramps/severe urge while a softener will just help keep things loose to avoid locking up. My go to stimulant is Dulcolax and will take 1 pill if I know I am backed up 2 if I am locked up. My go to softener is MiraLAX and will keep you regular while taking Opioids. Also be careful with stimulants as your body can become dependent on them.

 

[Subtlerustle]

There is an organic solution too. Drink two psyllium drinks a day like Metamucil and at bedtime take some magnesium bisclynate capsules. I take three at 200mg/each. You sleep well and in the morning you wake and have a one and done bm. The former is good for keeping the intestinal tract clean and the latter gets the motion started.

 

[Maromi]

Everything aside I had a colonoscopy done and was probably as nervous as you were, during so they took out a polyp (that was thankfully non-cancerous.)
Was prolly one of the most cost-effective procedures I've had done avoiding chemo and cancer treatment. Entire thing only ran me $800 (in US, unsure of what it might cost there.)

That aside, the drive for me getting it done was to see what was wrong with part of my colon, which is hard to get treatment drugs for unless you have that done.

 

[Edgewater]

I agree, that the colonoscopy is a safe tool to determine the health of your colon and something I have done on an every five year schedule. It can be a prelude to more aggressive surgeries. The prep is far worst than the procedure. It is commonly required before a urostomy, which I agree with others above is not a simply inspection /review, but a surgical change.

Not sure what doctors are available to you, but it would seem to me that seeing someone who is an expert in spinal pain maybe be a better choice as it sounds like you will want to confirm that your original spinal surgery was handled properly and/or if newer technics are not available.

 

[FrenchFriedOnion]

Hi everyone,

I was left with bladder control problems after I had a car accident and subsequent spinal fusion surgery in 2013. I am only U-IC. I've tried so many different painkillers since to deal with chronic pain, none of which have ever really worked too well. I've been taking gabapentin for the past 3 years or so which hasn't really ever worked very well, the pain is less if I take it compared to if I don't but it's still there and really bad.

I've now been prescribed amitriptyline a few weeks ago and for the first time in years, I've been in much less pain, I can be more active and more comfortable which is amazing however it's caused some pretty nasty constipation and cramps.

The pharmacist told me to take movicol which didn't work, I then tried fybogel which also didn't work and now I've seen my doctor and was prescribed biascodyl tablets (5mg x2 per day) which stops the constipation, but works too well.

I eat a high fibre diet habitually (I'm from the Mediterranean so bread/fruit/nuts are staples for me) and I've always been pretty 'regular' bowel wise if that makes sense.

I've now got really bad urgency and until I actually had a fecal accident this evening driving home from work, an absolutely horrible experience and the first time I've had a fecal accident since being a toddler.

I don't want to stop taking the first painkiller to actually work, but I also don't like the effects that the tramadol is causing. I really don't want to be in the position where I'm virtually F-IC as well and everything that brings with it.

I had a telephone consultation with my doctor again today and was offered the same thing they've been offering since my accident; a colostomy/urostomy. Something I am desperate to avoid at all costs.

Now, I can either stop taking the amitriptyline and be in more pain or; accept my fate and either manage the fecal urgency or have the surgery I've been avoiding.

Does anyone have any tips/ideas/suggestions?

I was originally told to eat a high fiber diet. I did for 7 years, I had 3 surgeries on it. I switched to beans/whole grains for fibre, dropped almost all veggies and fruit. High protein. 13 years without a surgery so far.. well aside from injuries

 

[SamESpencer]

Hi everyone,

I was left with bladder control problems after I had a car accident and subsequent spinal fusion surgery in 2013. I am only U-IC. I've tried so many different painkillers since to deal with chronic pain, none of which have ever really worked too well. I've been taking gabapentin for the past 3 years or so which hasn't really ever worked very well, the pain is less if I take it compared to if I don't but it's still there and really bad.

I've now been prescribed amitriptyline a few weeks ago and for the first time in years, I've been in much less pain, I can be more active and more comfortable which is amazing however it's caused some pretty nasty constipation and cramps.

The pharmacist told me to take movicol which didn't work, I then tried fybogel which also didn't work and now I've seen my doctor and was prescribed biascodyl tablets (5mg x2 per day) which stops the constipation, but works too well.

I eat a high fibre diet habitually (I'm from the Mediterranean so bread/fruit/nuts are staples for me) and I've always been pretty 'regular' bowel wise if that makes sense.

I've now got really bad urgency and until I actually had a fecal accident this evening driving home from work, an absolutely horrible experience and the first time I've had a fecal accident since being a toddler.

I don't want to stop taking the first painkiller to actually work, but I also don't like the effects that the tramadol is causing. I really don't want to be in the position where I'm virtually F-IC as well and everything that brings with it.

I had a telephone consultation with my doctor again today and was offered the same thing they've been offering since my accident; a colostomy/urostomy. Something I am desperate to avoid at all costs.

Now, I can either stop taking the amitriptyline and be in more pain or; accept my fate and either manage the fecal urgency or have the surgery I've been avoiding.

Does anyone have any tips/ideas/suggestions?

I would say have the procedures done to make sure nothing else is causing your bowel incontinence. They say incontinence is usually caused by other health conditions some which may lead to life threatening problems if not dealt with promptly. I am bowel incontinent myself and just this year had my first colonoscopy and while dealing with the many dirty diapers was awful the fact is that they found polyps in my bowel and signs of gastroparesis, so my medical team and I know what we need to keep our eyes on. I can't say it was pleasant but knowing early allows you and your doctor to formulate a plan to deal with the issues you might be facing.

 

[ltaluv]

Just so people know, a colostomy is not the same as a colonoscopy. A colostomy is a surgical procedure where the bowel is brought out through a surgically-created opening in the abdomen, and stool exits the body through this opening into a bag. That's a lot different from a colonoscopy, which is a routine procedure to view the inside of the colon with a fiber optic camera.

For the OP, I struggled for years with chronic constipation. I tried everything my gastroenterologists could come up with - laxatives, Linzess, high fiber diets, low fiber diets, Metamucil, Citrucel, Miralax, you name it. Nothing helped much. With my doctor's guidance, I managed it with water enemas two or three times a week, though toward the end I even had trouble getting the enemas to come back out. Some days I'd spend three hours in the bathroom, trying to get my bowels to work right. Linzess was the biggest thing that helped, apart from the enemas, but it wasn't enough to give me complete relief.

I had an end ileostomy with proctocolectomy last year, though it wasn't actually for the constipation but rather for an extremely high risk of colorectal cancer. It was a leap of faith to get the whole thing done at once, but because of my specific medical situation I was at high risk for complications if they'd done a J-pouch. I ended up getting my entire colon removed along with my rectum and anus, so there's no possibility it can ever be reversed.

The recovery from surgery was pretty rough, though honestly not as bad as I'd expected. I was in surgery for a bit over six hours, though that's because of the large amount of work it takes to get all the way down through the abdomen to get the anus removed. If you end up needing a colostomy, it's likely to be a simpler surgery that won't take so long. I had a lot of pain after the procedure, and it was a couple of days before I was able to start getting up and walking around. I was hospitalized for eight days after the surgery, though most people who aren't getting a Barbie butt aren't in for that long.

It's really amazing how much better I feel since my surgery, though. No more pain, cramping, bloating, or hours spent in the bathroom trying to manage my bowels. There's a learning curve with having a bag, but it's way less time, way less hassle, and way less pain than what I was dealing with for years. Even though mine wasn't done specifically for the constipation, if I'd known how much better I'd feel and how much it would improve my quality of life, I would have considered pushing my doctor for it a lot sooner.

That said, an ostomy of any sort - colostomy, ileostomy, or urostomy - is a major change and isn't something that should be done without a very compelling reason. I don't know what your doctors have tried, but if it were me I'd want them to try everything else before resorting to that sort of surgery. Many colostomies and ileostomies are reversible, so it's worth discussing with your doctor how long you'd need to have the ostomy and what the plan would be to reverse it. What are they going to do with your bowel while they've got the waste diverted to solve the constipation issues? These are valid questions, and you deserve to get answers to them from your doctor.

Meanwhile, as far as I'm aware, most urostomies are not reversible, so that's something you'll have to discuss with your doctor as well, and consider seriously before you commit to getting it done. It's certainly one approach to dealing with intractible incontinence, but it's one of the most invasive and life-altering ways of doing that. Have they explored options like AUS (artificial urinary sphincter) or other surgical options?

Regardless, most of what I wanted to say was that life can still be wonderful after ostomy surgery. My life is significantly better since my surgery - the bag is easy to manage compared with my longstanding bowel issues. As with any major surgery like this, there's an adjustment period, and many people struggle with body image issues afterwards. I'm far enough through my life, and have dealt with enough medical challenges, that I've been fortunate to avoid many of the body image problems, but I see many ostomates who struggle to feel like they can get back to doing the things they did before they had their surgery. Nearly everyone eventually works through that, but it can be a difficult journey.

If you have questions or need input, please feel free to message me. I'm active with the local ostomy community, and I'm happy to help you get answers to any questions you have about it. In the meantime, I hope you're able to find effective ways to deal with your bladder and bowel issues that don't involve this kind of surgery - as positive as it's been for me, it isn't something that I would recommend to anybody who has other options available.