Trying to learn more about C

[EyesofThunder]

My mom has Ulceritive Colitus and Crohns, pretty bad, the scope of her colon showed it to be tar black.

I know virtually nothing about it. I know she is taking a lot of pain pills and that concerns me, around 8 darvocet a day and others with it. Seeing that darvocet causes gastro bleeding, it has me very concerned this is making what is bad, worse.

Advice, tips, info, please!
Thanks!!

 

[DustyKat]

Hi EyesofThunder and :welcome:

I'm so sorry to hear about your Mum. I'm not familiar with the pain meds your Mum is taking but I'm sure there will be others along from the US that can help out with that.

I guess the thing I would want to know is where is your Mum at with her disease and why is she in so much pain?
I am assuming she is in a flare so what meds is she taking to bring things under control? Are they helping at all with the symptoms?

Has your Mum had any surgeries? Is she on any diet?Please stick around and have a browse through the forums, if you have any questions just ask away and we will do our best to help out, nothing is TMI!

I hope your Mum can get things under control and she is surrounded by a good GI and health workers. You must be so worried, do you live with your Mum or close by?

Take care, :hug:
Dusty

 

[Dexky]

Welcome Eyes!! Dusty pretty much asked everything! How long has she been diagnosed?
Maybe you could convince her to join the forum. It's such a relief to find others who have or are experiencing similar things. Good luck to you both!!

 

[Astra]

Hi Eyes
and welcome

I'm not familiar with darvocet neither, had to Google it, apparantly it's an opioid, a painkiller, and was called Co-Proxomol here in the UK, but has been withdrawn for a few years. But you're right about the gastro bleeding, as well as liver failure.
Has your Mum got a gastro specialist? Do you know which IBD meds she's on?
Hope this forum helps you to answer all the questions buzzing in your head!
You're no longer alone with this, any questions, fire away, always someone here to help
Take care of you too, try not to worry.
lotsa luv
Joan xxx

 

[EyesofThunder]

She was diagnosed maybe a year ago, and it is pretty severe, dr said worst he has ever seen, her colon looked like black tar when they did a scope of it. She is in a flare now, and not sure what meds, but they had her on a generic that she said didn't work, and she needed one that is around $125 US a month. They want her to do some sort of blood infusion, but her insurance won't pay for it. I don't think much is helping her right now.

My mom is in down south, I am around 1300 miles/2100km north of her, so I can't be there much, as well as unemployed now, so money is very tight.

She hasn't had any surgeries, not sure what they can really do being I don't know the nature of the disease. She has active bleeding, bad mouth sores, bad headaches, diarrhea often, bad nausea, and bad abdominal pain. She is coping with the Darvocet (I think also called propoxyphene in UK) now, best guess the D100 dosage and taking more than prescribed dosage to get the pain under control. She doesn't feel that the drs listen when you tell them you are in pain. I am not happy she is taking such a high dose, the Tylenol/acetaminophen dose with that many pills a day (around 8) is over the 4 grams a day limit and pushing lethal levels (6 grams+ in a 24 hr period). I am angry they put acetaminophen in everything. The drug companies NEED to stop, they need to realize people WILL and DO overdose on it, fact of life, they are going to, and they are going to get too high levels of it and make the liver toxic. And people don't know they are even doing it. I am mad over that. It is a drug that is out of control completely. People don't understand that it is in everything from cold meds to pain killers to headache relief.

I am trying to get my mom to call the dr and get something different that works better. She has some oxy-codone/OxyContin, she takes with the Darvocet when she is really bad. I don't like her mixing these strong meds at all.

She is on a diet, but I don't know if she has one that really works well for her. She can't seem to eat much of anything. If you have diet recommendations, that would be great.

She is in pretty bad shape over this. It seemed to come up suddenly in her mid 60's, but after talking to her and my dad, I wonder if she has had some form of it since her 20's, but never diagnosed. Extreme stress all her life. She has had ulcers since she was young. She was taking (some years ago) 1600mg Ibuprofin on an empty stomach before bed nightly, as well as other pain meds like vicodin (hydrocodone). Bad for the colon/GI tract.

She has been on pain pills for years for back issues. So many of these drugs have such bad side effects on the colon/GI tract.

Thanks so much DustyKat, I will dig around and see what I find. It is such an out of control situation for me, and when i find out all the pain meds she is on and the overdose of them I get so concerned. And somehow the drs all prescribe more. The drs should be monitoring this so it doesn't get out of control like this.

Hi EyesofThunder and :welcome:

I'm so sorry to hear about your Mum. I'm not familiar with the pain meds your Mum is taking but I'm sure there will be others along from the US that can help out with that.

I guess the thing I would want to know is where is your Mum at with her disease and why is she in so much pain?
I am assuming she is in a flare so what meds is she taking to bring things under control? Are they helping at all with the symptoms?

Has your Mum had any surgeries? Is she on any diet?Please stick around and have a browse through the forums, if you have any questions just ask away and we will do our best to help out, nothing is TMI!

I hope your Mum can get things under control and she is surrounded by a good GI and health workers. You must be so worried, do you live with your Mum or close by?

Take care, :hug:
Dusty

 

[DustyKat]

I have had a look at what Darvocet is marketed under in Australia and it appears to a Digesic or Capadex type preparation. I have a fair bit to do with pain management in my job and to be honest from the pain you are describing your Mum to be in it would be next to useless. It is very rare that I see these drugs prescribed as they are considered to be for mild pain and moderate pain at a pinch. The consensus here seems to be that you may as well be on straight Paracetamol (Tylenol) as Digesic. Paracetmol 500mg 2 tablets 4 times is frequently used as a basis for pain management upon which you then add the stronger meds, such as the Oxycontin, you have already mentioned, twice a day. The key to pain management though is for the regime to be regular and consistent. I personally have no issue with well developed pain management programs but I can certainly understand your concern with your Mum's use of Darvocet 100 and something needs to be sorted out with the prescribing of this drug to your mother.

In view of your Mum's chronic pain, gut issues and age perhaps it is time for her doctors to start looking at prescribing pain patches instead, Norspan/Durogesic. I would imagine that your Mum's pain may be quite complex and not only related to her gut.

Do you know if there has been any mention of using Prednisone to bring the flare under control?

Dusty.

 

[EyesofThunder]

The dr wants her to take a steroid, but she puffs up bad with it and gains 40 lbs, so she won't take it. She has nad bad reactions to them before. I have take it before and never had problems, but she has had a lot of issues with them.

I was wondering if the patches would be better.

I have always wondered what "pain" people are trying to stop. Take the edge off, or be 100% pain free and even a little is not allowed? I had shoulder surgery, and everyone said that is one of the worst pain, and I didn't do too bad, but I also followed the directions of the dr/nurses to a T, they said do not "not" take your pain meds, follow the schedule of them. So I did, I had my kids help as I was sorta drugged up. That helped a lot. They said (and many others) that if you miss a dose, it would take longer to get back up to what is needed to manage the pain vs staying on it. So I did. And was fortunately able to ween myself off completely of the hydrocode 10mg in 10 days. Most everyone I talked to was on it for 2-3 months. And I was torn bad in my shoulder too.

Yes, she has some back pain that she can't sleep well with etiher. She fell some 44 years ago down stairs and it has never been the same since.

I have had a look at what Darvocet is marketed under in Australia and it appears to a Digesic or Capadex type preparation. I have a fair bit to do with pain management in my job and to be honest from the pain you are describing your Mum to be in it would be next to useless. It is very rare that I see these drugs prescribed as they are considered to be for mild pain and moderate pain at a pinch. The consensus here seems to be that you may as well be on straight Paracetamol (Tylenol) as Digesic. Paracetmol 500mg 2 tablets 4 times is frequently used as a basis for pain management upon which you then add the stronger meds, such as the Oxycontin, you have already mentioned, twice a day. The key to pain management though is for the regime to be regular and consistent. I personally have no issue with well developed pain management programs but I can certainly understand your concern with your Mum's use of Darvocet 100 and something needs to be sorted out with the prescribing of this drug to your mother.

In view of your Mum's chronic pain, gut issues and age perhaps it is time for her doctors to start looking at prescribing pain patches instead, Norspan/Durogesic. I would imagine that your Mum's pain may be quite complex and not only related to her gut.

Do you know if there has been any mention of using Prednisone to bring the flare under control?

Dusty.

 

[DustyKat]

As far as the Pred goes, well this is a hard. I can't speak from experience but I know it is a love/hate relationship for the majority of people and in many cases the only way to bring things under control. Maybe your Mum has also reached a point that it is all too much and she needs someone to assist her take control for her.

As to the pain, it isn't so much about stopping it as such but controlling it so that life once again becomes liveable. I think you would find with most people that experience chronic pain that when well controlled many would say they have no pain and for others there remains underlying aches and pains but they are more manageable and they are still able to function very well throughout the day.

That is right what you were told about your medications that why it is so important that appropriate medication is take regularly each day. People fall into the trap of thinking ~ I don't have any pain so I don't need my medication ~ the reason you don't have pain is because of the medication.

Dusty.

 

[EyesofThunder]

Sounds like my mom is on Apriso, but the cost is too much, she can't really afford it. It is like nearly $400 for 3 months worth. Owch! So much for Medicare....

So drugs like Apriso, do they help prevent the problems or control the symptoms, or ?

Thanks!

As far as the Pred goes, well this is a hard. I can't speak from experience but I know it is a love/hate relationship for the majority of people and in many cases the only way to bring things under control. Maybe your Mum has also reached a point that it is all too much and she needs someone to assist her take control for her.

As to the pain, it isn't so much about stopping it as such but controlling it so that life once again becomes liveable. I think you would find with most people that experience chronic pain that when well controlled many would say they have no pain and for others there remains underlying aches and pains but they are more manageable and they are still able to function very well throughout the day.

That is right what you were told about your medications that why it is so important that appropriate medication is take regularly each day. People fall into the trap of thinking ~ I don't have any pain so I don't need my medication ~ the reason you don't have pain is because of the medication.

Dusty.

 

[DustyKat]

Apriso is what they refer to as a maintenance drug so it is designed to control and prevent symptoms once they are under control. It's main purpose is for it to be used when, clinically, the patient would be deemed to be in remission. You say your Mum is flaring therefore the drug, at this point, is not working.

Unfortunately unless your Mum gets the flare under control there is no way she is going to get rid of any of the symptoms, everything she does is only a bandaid solution. I don't in any way mean to scare you and your Mum may never reach this point but if left untreated, flares can have the potential to become life threatening.

I hope your Mum can find the answers she needs. Keep us posted!

Good luck,
Dusty

 

[ragtop]

Hi. I'm the Mum Eyes is talking about. I have had IBS since my 20's and stomach ulcers, actually called an ambulance once the pain was so bad. A year ago last July was the first time I was diagnosed with Crohn's, then they said no, then in January an ulcer in my colon burst and I lost about 2 units of blood. They said again it was Crohn's and Ulcerative Colitis. They put me on steroids that time and I felt great while I was on them, but gained back 40 pounds of the 67 I had worked so hard to lose. It was very depressing. I only agreed to stay on it 6 weeks but it was about 8 before they got me off it. It took me about 3-4 months to get my strength back. I was on Apriso and Carafate liquid. I have never taken the pain meds for the Crohn's but for the back and hip problems my son mentioned. When this last episode came on, we were getting ready to go on a cruise so I started taking the Apriso to ward it off. It worked until Nov. 4th when we were in the Caribbean with Hurricane Tomas. I got severe headaches and all week had an ear infection. I'd also had a sinus infection that didn't go away after antibiotics 3 months ago. I never take pain pills during the day normally, but had to for the headaches. I ran out of Apriso when I got home and went downhill fast. I started bleeding again a couple weeks ago with horrid pain in my abdomen. I've eaten very little since everything turns the cramps on and I'm running. I've been so weak I either am sitting or in bed. I went back to my original GI doctor and he did another colonoscopy in May when I was feeling pretty well. He said it was definitely Crohn's and Ulcerative Colitis, but not a severe case. It's fairly unusual for people 64/65 to get it. I had a bleeding ulcer in my stomach about 3 years ago and my colon still looked fine at that point. My chiropractor recommended a natural supplement called Okra Pepsin E3 and a health food store recommended something called Intestinu. Both are supposed to coat your intestines. Right now my worse problem is a bad sore on my leg. It's like a boil, very red, raised and very painful. Can't touch it at all. I'm going to my primary dr. in the morning to see if there's anything to do for that. So to sum up, I have several problems with arthritis, fibromalgia, headaches, sores in my mouth and body, sinus problems, sore throat. Right now I get very sick if I eat anything sweet so I'm sticking to very bland foods like crackers, white toast, yogurt and tea. I'm hoping to find out about these sores on here if anyone has them or knows about them.
Thanks,
Ragtop