How bad does it get

[vh8484]

My mom was diagnosed with IC about 15 years ago. The doctor had her on very strong meds -- Oxycotin, Morphine, Percocet, sleeping pills and probably more I don't even know about. Plus my mom drank. She was housebound, never drove or went anywhere. Needless to say she was a zombie and always blamed it on her IC pain.

14 years later, last christmas, mom had a seizure. She and the doc decided to wean her off the hard drugs and start her on a treatment of Methadone with occassional Percocet. Oh and she is also on Xanax. She quit drinking alcohol as well. For the first few months, I had my mom back. She was coherent, driving to places, participating in family events, it was the most wonderful thing in the world time in the world for us all, including her!

Slowly, she began to complain of the pain more and more to the doc, who just upped her meds. So now she is back to where she was, only worse. She is so pale, high, slurring, etc.

My question is that I wonder if this is how it is with IC. Sometimes I think my mom is addicted to the drugs and uses the IC to get more. Although I know she suffers from quite a bit of pain at times, is it really bad enough for her to be on these hard drugs? I have reviewed a lot of forums, and I never hear anyone describing it like my mom does.

Thanks for listening,
Lynda

[ICLori]

Researchers who have studied IC, claim that in severe cases (like what your mother has, and what I have had, and so many others here) the pain is comparable to the pain of someone dying of cancer.

And what is worse, is that the longer this pain continues, especially when not fully controlled by pain meds, the more nerves grow to carry the pain signals, and the stronger the pain becomes and harder to treat.

So, short answer, your Mom asks for those drugs because she absolutely needs them. Her life isn't very much fun at all, even on those drugs.

There are some new treatments now for IC that are showing some promise. For example, some researchers believe IC may be autoimmune in origin and have tried treating IC'ers with a drug for autoimmune diseases called Cyclosporine-A (Neoral or Sandimmune). With this drug, they achieved a 75% to 85% complete remission (no bladder pain at all) rate with patients with severe IC who had not responded to any other IC meds. This drug does have risks, and can have side effects, but the researchers concluded after studying the issue, that this medicine is both safe and effective for treatment of IC.

There are many posts on the boards talking about CyA or other meds to treat IC. Perhaps you could find out what meds your Mom has tried, and maybe she could try other meds that she has not yet tried, like CyA.

Thank you for caring about your mother, and welcome,

Lori

[Imustpee]

I had my bladder removed in Dec because I couldn't stand living with it anymore. I lived with I.C for 40 years...enough was enough....I no longer have any I.C. symptoms. Altho I am having some post-op complications I will be all well by this time next month..I have a life I have never known...I "Pee" every 5 1/2 hours now....4 - 5 times a day.....I hope your mom finds the help she needs...none of us deserve to suffer with this horrible disease..

[vm]

It can absolutely get that bad - we see it here on the boards. Some people are in contant pain and need the harder hitting meds to be able to function. We're talking oxycontin and meds like that. Most people wish desperately that they didn't need to take them.

That said, it must be very painful to watch your mother go through this and to feel like the mom you knew before is gone. Many of us know the pain of feeling like we lost the life we had before, but for the family members of IC patients it has to be hard, too. I think we both grieve when this illness takes its toll.

I bet it was hard to feel like you had your mom back for those few months and then have it taken away - must have felt like the rug got pulled out from under you. :( I'm sorry she wasn't able to function pain-free for very long without the medications.

It is possible for someone in chronic pain to also be addicted and to abuse the meds. I can't possibly say if this has happened with your mom - I have no idea. I know people in AA who really do have chronic pain - and who also abused their pain meds.

Either way, I believe it must be painful for you to feel like your mom isn't the person she once was. Please know that she is probably feeling the same way - and probably has a lot of guilt that she can't be there for you like she wishes she could be. I hope you have friends or a support network to talk to about your feelings. It is HARD to live with someone in chronic pain - I've been on both sides.

Good luck, OK? :kissing:

[ICNDonna]

Not everyone with IC has the horrendous pain your mother has, but for those who do, even normal daily activities become impossible without pain relief. If your mother is in that group, the best possible thing you can do for her is to accept that she needs the medications just as much as she would need to take insulin if her diagnosis had turned out to be diabetes.

Of course it's not okay to drink alcohol with pain meds, but you have said she isn't doing that any more.

You can help by accepting her the way she is. She's still the same person and needs you to see her that way.

I think it's great that you really care and are looking for answers.

Warm hugs,
Donna