Struggling with Slow-Release Meds & Ileostomy

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Past Member
Feb 20, 2020 9:41 pm

I'm on slow-release medication, having had two small bowel resections and an ileostomy. I'm struggling to make my doctor understand that I should take immediate release. Does anyone else know anything about medication with an ileostomy?

Be great to hear from anyone who cannot also absorb slow-release meds.

Adele xxx

w30bob
Feb 21, 2020 4:35 am

Hi Adele,

What determines the "release" is more about the medication's packaging (uncoated, coated tab, gel cap or capsule), than the med itself. Where it releases also determines the amount of systemic effects it has on your body... so it really depends on what part of your body you want the med to act on and how bad the med would be if it were allowed to act on your whole body. I'd suggest you talk with your Doc and find out specifically where he's targeting with each med and how does he know it's being released in that area. I have taken meds that came out whole and "un-released". I decided to "help" release the meds earlier by biting the tabs in half before swallowing, or cracking the capsule with my teeth before swallowing. I'm not recommending you do that until you better understand what the impact on your body would be if they released too early. You need to be careful because some meds you absolutely do not want releasing in your stomach and being spread through your whole bloodstream and body. Most meds can be compounded in different release packaging, but some cannot due to patent protections. For those that cannot, you can follow my example (if recommended by your Doc). Speeding up the release is much easier than trying to delay it.

Regards,

Bob

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Bill
Feb 21, 2020 6:46 am

Hello Adele.

I'm with Bob in thinking that you should be discussing this sort of thing with your doctor. However, if he/she is not listening or does not understand, then try speaking to a stoma nurse. I have found that these nurses are very good at 'advising' doctors about what they should and should not be doing with regard to management of stomas post-operation. Alternatively, when I am dealing with my own GP ( who openly admits to knowing little or nothiing about stomas) I will take him some (brief) information obtained from the internet, so that my points are reinforced by those of his own profession. 

Hope this helps.

Best wishes

Bill 

britathrt60
Feb 21, 2020 6:57 am

Hi Adele.

I have an ileostomy and never take anything that's time released. Like Bob, I too have had meds that pop out whole. I always remind my doc when he writes a script. Take care.

Ange.

ron in mich
Feb 21, 2020 2:20 pm

Hi all, I take a time-release medication in capsule form and I always see tiny white BBs when I empty it. So, I mentioned it to my doctor and he said as long as I benefit from the medication, don't worry about it. He also said to talk to the pharmacist to see if there is an alternative, but I never did.

 

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newyorktorque
Feb 21, 2020 4:09 pm

I have a loop ileo and some serious malabsorption issues. While I was still in the hospital post-surgical, I noticed some pills were dropping whole right into the bag. Some pills had to be crushed or I simply asked for another form of that drug.

w30bob
Feb 22, 2020 12:01 am

Hi Ron,

Your doc probably wasn't concerned because he figured some of the medication was dissolving before it hit your bag. I forgot to mention above that each person's bile acidity also plays a role in breaking down whatever is coating or covering the medication. So for each of us, the actual release point is different. It gets pretty dicey when they try to target specific portions of the bowel, but most meds are coated/covered primarily to make sure they don't release in your throat or stomach.

Bill said "However, if he/she is not listening or does not understand, then try speaking to a stoma nurse," and that's good advice for sure. But if it were me... I'd also start looking for a new/better doctor. Having a great, not good, relationship with your doctor is always incredibly important. He or she advocates for you if things get ugly and you're unable to... so I've found it of utmost importance to keep changing docs until you find one that really works for you. I know that's inconvenient and a lot of work... but it's not something you want to regret later... when it's too late. Just sayin'.

Regards,

Bob

britathrt60
Feb 23, 2020 5:32 am

Hi Bob

Changing docs in Canada is like getting blood out of a stone... Tons of people here can't even get a doctor.

...If you can change docs as easily as that in America, then you are very lucky...

Ange

w30bob
Feb 23, 2020 4:20 pm

Hi Ange,

Sorry, I always forget this is a world-wide audience on here. Yeah, when I get rolling I tear through Docs like McDonald's french fries. I'm constantly amazed at how many dumb-ass doctors there are here in the States. I just feel real bad for the folks who don't know that and blindly do what they say. I hope that if you don't have the selection of docs up there that we do.........you at least have better quality.

;0)

Regards,

Bob

Past Member
Feb 23, 2020 5:49 pm

Hi Ange,

Your comment is very interesting in light of what one of our presidential candidates wants to do with ours here in the states.   My son and family lived in Burlington, Canada for a number of years and their limited experience with Canadian healthcare was pretty good.

Best,

DAVE

sculptorjohn
Feb 23, 2020 5:52 pm

Between 1998 and '06, I had what's called a K-pouch, which was my ileostomy built inside of my abdomen, allowing me to drain it 2-3 times daily with a catheter, and simply wore a little patch over it. No leakage or odor issues whatsoever. It allowed me to go back to work as a nude model for the CIA (Cleveland Institute of Art). There may have been others, but so far as I know, I'm the only artist's model who ever had his guts pulled out, sliced up, and stuffed back into his belly so he could go back to work posing naked for art students.

But what I'm getting is that some idiot neurologist prescribed me the "enteric" time-released version of the generic Tegretol that I have to take for epilepsy that I acquired from a 1994 brain injury. He thought he was doing me some sort of favor by giving me pills that I'd only have to take twice a day instead of 3 times.

Well, it was a g*ddamn bloody mess because the husks of those enteric pills stuck to the inside of my ostomy like barnacles, and I didn't realize what was going on till I'd taken a whole month's worth of them. I had a hard knot of the damn things in there that kept blocking my efforts to insert the draining catheter inside of me, and for the next two years, I had to spend hours every day just navigating it past them as they slowly worked themselves out attached to the openings on its side.

I should have sued him, but I didn't 'cause I thought he was a nice guy. But then, fully aware of the trouble I was still having with that, as well as the drowsiness those pills cause and the general inability to focus and countless partial seizures I have every single day in spite of the meds (that cause spasms on my right side and disorientation but not unconsciousness), he refused to sign a waiver that would have released me from jury duty. The bastard. (I learned years later he'd been sued by a couple of his nurses for sexual harassment, but I digress...)

My colorectal surgeon, the late Dr. Victor Fazio (who, in 1981, had directed the emergency surgery on Pope John Paul II after he'd been shot, via high-resolution fiber optics from Paris to Rome), wrote my neurologist a blistering letter that NO person with a colostomy or ileostomy, not just one with a K-pouch, should ever be given that sort of time-released medication because of their propensity to block up ostomies or leave the body without releasing the full dose. Please have another talk with your doctor and stress that to him.

britathrt60
Feb 24, 2020 1:43 am

Hi Dave.

Yeah, I mean our healthcare is good in that we don't have to pay for doctor visits, hospital stays, etc... It's just that we have such a shortage of doctors here because of the government BS. I live in a city of 45,000 and my doctor has 4,000 patients and is here 3 days a week and in Guelph the other two, so it's hard to get an appointment. I've been going to him for 20 plus years.  I called for an appointment on Feb 18 just for a prescription refill and they are booking into May. They squeezed me in on March 23. It won't do much good because I don't have any pills left. ...Crazy, crazy cutbacks the government is imposing on healthcare, education, etc. here. Bloody ridiculous government. ...Take care.  

Ange.  

w30bob
Feb 24, 2020 10:28 am

Hi Ange,

Your doc won't simply call in a refill for you without seeing you?

Regards,

Bob

JudiA
Feb 24, 2020 3:00 pm

Hi

I have an ileo and multiple revisions. My doctors are leaning more towards Crohn's with my IBD. I have found undissolved pills in my bag during flares. I take some meds in liquid form (Bentyl and omeprazole) and others I chew (yeah, nasty). So I hear you and understand. I have found a compounding pharmacy will often be more helpful than a regular one. Good luck!

Judi

britathrt60
Feb 25, 2020 12:56 am

Hi Bob

No, you have to have a regular appointment for refills. He won't even do refills when he does his walk-in clinic. I'm going to have a talk with him on March 23 about his snotty receptionists who act like prison wardens. Take care.

Ange.

Urostomate
Feb 25, 2020 10:30 pm

Your pharmacist may have a better insight than your doctor when it comes to absorption of medication. Some ileostomates that I know have found that capsules and tablets go straight to their pouches and very little, if any, of the medication stays in your body.

w30bob
Feb 26, 2020 2:02 am

Uro,

I think you're right about talking to a pharmacist.......but I don't think he can change a prescription in any way (including how it's released, such as gel cap instead of coated tablet) without consent from the prescribing doctor. That would involve assuming a shitload of liability by the pharmacist and surely piss off the doctor. So I'd talk to the pharmacist, get his recommendation and then re-discuss with your Doc. If there are any docs or pharmacists reading this, can you clarify please.......I'd love to know if a pharmacist can change the delivery system for a prescribed medication.

Thanks,

Bob

Urostomate
Feb 26, 2020 6:15 pm

You are right, a pharmacist can only fill a prescription as written, but he/she can call the doctor and between the two of them, come up with a workable solution.

britathrt60
Feb 26, 2020 10:45 pm

Hi Uro

That's really interesting...my doctor and pharmacist don't communicate...the pharmacist sends faxes to the doc and never gets an answer back...would be great if they had verbal communication...never happens.

Ange

w30bob
Feb 27, 2020 12:33 am

Hi Ange,

That's the norm. When a pharmacy calls a doctor, they never actually talk to the doctor. They talk to the doctor's assistant....call them what you will....intern, nurse's aide, nurse, etc....but it's just not SOP for docs to actually talk to a pharmacist. What normally happens is the pharmacy calls the doctor's office if they have a question, leave a message with an assistant.....the assistant leaves a note for the doctor.......the doctor replies to the note with another note......the assistant calls back the pharmacy......and you get your meds. Yeah, it really is that screwed up. At least down here in the States. But regardless of that, it's always good to have a pharmacist as a friend. They are pretty smart folks, usually with some street smarts, and can get to know you better than your doc. Just sayin'.

Regards,

Bob

britathrt60
Feb 27, 2020 9:05 am

Hi Bob

Thanks...yes, it is good to have a good relationship with the pharmacy. I've been with the same one for years...they are very helpful and knowledgeable. And lord knows they have sent multiple faxes to my doc on my behalf but to no avail. It is what it is...it's not my doc's fault...it's his prison warden receptionist who won't relay mine or the pharmacist's request to my doc...all I need is a prescription renewal....I can't get an appointment to see him until March 23...he will not be impressed with his receptionist when I tell him about the unprofessional manner in which she has conducted herself to me and the pharmacist....this has been going on for the past ten days and now will be another month without my meds until I see him...such a pain in the ass... good thing it's not heart medication or I'd be dead now..lol..

Ange

w30bob
Feb 28, 2020 12:48 am

Ange,

I sent you a PM.

Regards,

Bob

Immarsh
Feb 29, 2020 3:24 am

Hi Adele & fellow ostomates. My name is Marsha, and I have had my ileostomy for over 50 years. I had the entire large intestine removed as well as the final (rectum removal) surgery as well. As medications changed and developed, I've had numerous conversations with my doctors (especially gastroenterologists) to ensure I was getting the benefits of the medications I was taking (prescribed by other doctors). When I have more medication questions, I consult with pharmacists. While they can't change a script from your doctor, they are an excellent source of knowledge about the medications in general. Like some of you, some meds come out "whole", but I was assured by the pharmacist that the potent part of the medication was "squeezed" out. Without a large intestine, we don't absorb as much fluid as others do, so we can see the "bulk" part of some pills come out. I try not to take pills with the hard outer coating and try to avoid time-release pills as well. For me, on an empty stomach, I have about a 4-hour food in/food out time frame. I make sure I tell the prescribing doctor the details (if he/she isn't a gastroenterologist or general doctor). I hope this helped. Best of luck to you. Marsha

IDIOstomy
Mar 04, 2023 9:30 pm

My mom has an ileostomy and we get her psychiatrist to write for the Effexor tablets (not-XR) and she has to take it three times a day (Pain). I'm a pharmacist and I just want you to please talk with your docs prior to crushing/dissolving or breaking ANY medication in half because some extended/sustained release formulations are not meant to be taken this way. They are made to deliver the drug dose over time and crushing them could potentially dump more drug in your system all at once and be dangerous.

I'm currently researching this topic because 3 times a day is difficult for my elderly mom to keep track of and so far, I found this regarding COLOSTOMIES on the manufacturer's information for EFFEXOR XR:

Residual Spheroids


Effexor XR contains spheroids, which release the drug slowly into the digestive tract. The insoluble
portion of these spheroids is eliminated, and patients may notice spheroids passing in the stool or via
colostomy. Patients should be informed that the active medication has already been absorbed by the time
the patient sees the spheroids.