Re-post for bridget

[vm]

This is a re-post from bridget. The original post was on a thread started in 2001 so we thought you'd get more response if you had your very own thread just for you. :)

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trying to understand

hey i have ic and live in pain for two years iam not here to judge and sometimes i wish i could take something to make the pain go away i have not had agood night sleep in over two years because iam scared to get addicted to anything i should say while iam typing my husband is at a twelve step meeting hes been clean for six months after serving two months in the parish jail for a dirty urine after a year of soberity hes in his program in is doing very well but there is a lot of butts first i had ahydro done in was scared to take meds home so i didnt not that iam not in discomfort but i dont want the temptation there second his sister is in the i.c. unit for an overdose on lorecet the drugs are all around us and very easily can be very addictive without even notice so the question that i have after all that is do i stay in pain or do beleive in myself and trust that i need pain meds because iam in pain b/c for some reason i feel weak if i was to take them iam not sure if that made ant sense to anyone but if you get it give your best response

bridget

[vm]

Hi, bridget. :)

Are you a recovering addict or alcoholic? I think the suggestions people make may vary depending on whether you do have a history of substance abuse or if you do not and are just worried about possible addiction.

Around here you will always read that if you are in pain you NEED to treat that pain. There is no reason to stay in pain when there are medications out there that can help you sleep and live comfortably. If you had diabetes you would take the medicine you needed; if you had a heart problem - same thing. Please don't deny yourself medication soley out of the fear of addcition.

When people are truly in pain the chances of becoming addicted to pain medication are very slim. The media has spotlighted pain medicine addiction and it has scared many patients and doctors from taking or prescribing adequate pain medication.

PLEASE discuss this with your doctor and tell him or her of your concerns. You are absolutely not weak if you take pain medication. Not at ALL. When we are in pain it affects our own lives and the lives of those around us. Think of doing it for others if not for yourself ---- that may make it easier.

If you are concerned about having the pain medications around the house b/c your husband is in recovery you could always lock them up so it's less temptation to him.

Good luck. Follow your gut on this, OK? :kissing:

[tigger_gal]

Thanks Kim, and great post.. my hubby has been sober *again* now for nearly 2 years.... its alot of work and I am sure a great strugle.. he stil don't attend functions that have any alcohol.

[ihurttoo]

Dear Bridget,

I just read your post, and was waiting for an answer to Kim's question about whether or not you, personally, had ever had a problem with addiction before I responded. However, the more I have thought about it, the more I think it really doesnt matter if you have or havent had a problem, because if you need pain meds, then you need them, regardless of what your history is.

Even people who have had problems with addiction can still have real pain that really has to be treated with pain meds. However, that being said, there are some that are preferable to others if addiction is a concern. For example Methadone is a pain medicine that is also used to help addicts get off pain meds, because it doesnt give the "high" that some meds could give.

However, I do take daily pain meds (Morphine and Lortabs) and have never gotten "high" or "buzzed" from them. I think it is because all of the medicine is going to work on the pain and there just isnt anything left over to work on my head. (Sorry if that is too simplistic of an explanation, I just dont know any other way to describe it!)

It is true what Kim (VM) said, that studies have shown that very few people who take pain meds for actual pain actually become addicted. They may become habituated or tolerant, but that is an entirely different thing. Besides, drs who prescribe pain meds will taper you off of the meds when the time comes, and they will also generally prescribe other meds to help ease any symptoms of withdrawl when you are ready to go off of them.

Having said all of that, there are lots of things to try before most ICers have to go the pain med route. Once a d/x of IC has been made, most Drs. will start the patient on Elmiron, a med thought to help coat and possibly heal the lining of the bladdr. They also generally prescribe Detrol LA or Vesicare, or another type of drug in this genre to help with urgency and frequency. Vesicare also helps with bladder spasms. Then there is Pyridium or URimar-T and those kinds of meds. These are the ones that turn your urine a different color and help with the burning, and some of them also help with bladder pain, but they only go to work on the bladder, and dont make you feel groggy, drunk or anything else that other pain meds can. Most Drs. will also order Elavil, an antidepressant, or a differant one. These help ICers in many differant ways. Some of these ,(like Cymbalta, which I take), also help with neuropathic pain (which includes some forms of IC). Then there are Drs that prescribe neuropathic type drugs such as Neurontin, Keppra, etc. These drugs also help with neuropathic pain.

The above listed drugs are just a very small sampling of the meds that are currently used in the treatment of IC. There are many, many more! None of the aforementioned drugs are narcotics, and none of them are drugs that a someone who has a drug problem would steal or would use for kicks, b/c they would get nothing out of it, unless they needed them, like you do.

Another thing that is so critical for most ICers is the IC diet. You will find links for it at the top of the page. Almost all ICers have sensitivities to at least some foods and beverages, that make their symptoms much worse. It is imperative that you do the elimination diet discussed on the diet sheet, if you have not done so already, to find your personal triggers. This step alone helps a great many ICers enough that they do not have to take pain meds on a regualar basis. I strongly encourage you to take this step, if you havent already done so.

Alot of ICers also get alot of relief from having medicine put straight into their bladder with a catheter. These are called bladder instillations. Differant drs. use differant formulas. I have tried the DMSO treatments, and while I saw some improvement with them, I now only do what is called Rescue instillations that contain Lidocaine to numb my bladder when I am having a really bad flare. (I have daily pain, but for me, flares are when my pain is unbearable.) Many ICers go into remission from the DMSO treatments.

Alot of ICers also go the Alternative Medicine route, using herbs, vitamins, accupunture, meditation, pelvic floor therapy, etc. I am not very knowledgable about this area, however there is a whole area of this site devoted to this, so it would defintely be worth looking into.

The ICN also sells a wonderful book in the shop called "The Interstistal Cystitis Survival Guide" by Dr. Robert Mouldwin. There is a link for the shop/market at the top of the page. This book was invaluable to me when I was first d/xed, and I still refer to it from time to time.

In this book, the author defines IC, lists the possible causes (although no one still knows for sure EXACTLY what causes it), tests to diagnose it (and descriptions of the procedures), meds commonly prescibed for it and their side effects,, co-existing conditons (including descriptions and their treatments), therapies and treatments beneficial to IC patients (including descriptions), IC and disability, and much more. I would recommend this book to any ICer. It is very inexpensive, and well worth the money. (I mean I paid $14 for mine 2 yrs ago, and still refer to it now! Whereas, I have paid many $20 co-pays to Drs to find out what I had, and came up with nothing! I learned more about IC in the 2 hours it took to read this, than I did in the 7 yrs I had been going to drs at least twice a month!! So, needless to say, I think it is a MUST for every ICer!

I have rambled on and on, but the point I was trying to make is this: If you have tried other things (or are trying other things) and are still in pain, then by all means, you should definately look into pain meds, whatever your history. No one should have to live in pain! But, if you have not tried any of the above, then you owe it to yourself to look into them first, b/c who knows, they might help you enough that you dont need pain meds after all!
But, if you have tried (or are trying) other things, and still in pain, then please talk to your dr. about what your other options are, and about pain relief. No one deserves to suffer!!!

I hope that you will take the time to explore this site. It has been a God-send to me and many other ICers. There is a world of info on here and many good, caring people to help you.

I hope you get the help and relief you need very soon! Hugs, Amy

[mare mare]

Hi Bridget!
Take the advice of these very wise ladies!! :angel:
It seems you are focusing on the needs of others around you before yourself.
(which is not a bad thing at all!)but it seems time you focus a little on your own needs. As long as you're under a Dr's. watch with your meds and you might have to find a hiding place for them, don't feel guilty! This is what pain meds are actually supposed to be used for!! Pain!! I know you must have suffered after your cysta/hydro if you didn't take pain meds.:headbang: The better you feel, the more you can be there for your family!!
I'm sure you've heard this before: "If mama ain't happy, ain't nobody happy!" So, So True!!!!:smile tee
Hugs, Mare Mare

[ICNDonna]

I have to agree. You need to be comfortable and if it takes some pain medications to get there, I encourage you to talk with your doctor about this. You might consider investing in a small safe to use for storing your medications. Since your husband is in recovery, and because you love him, you will want to keep temptation away --- for his sake.

I do think it's an excellent idea to be frank with your doctor.

Sending gentle hugs,
Donna

[vm]

However, the more I have thought about it, the more I think it really doesnt matter if you have or havent had a problem, because if you need pain meds, then you need them, regardless of what your history is.


As a person in recovery for 16 years I have to absolutely disagree with this. There are precautions someone with a history of substance abuse should take if they need pain medication. I've known people who have relapsed while taking pain medication for a real pain issue.

I have had to take pain medication 3 times in recovery - after my 2 c-sections and after my cysto w/ hydro. It was extremely important for me to let my doctors know my history and to work with other people in my support system as I was taking the medication.

A person in recovery absolutely should not have to live in pain, but there are things they need to do in order to safeguard their sobriety in the event they need pain treatment.

[BeachBaby]

Hey Bridget,

Well, I am not real well versed on a personal level, so my response to this will be somewhat generic. I am also not clear if you are posting in regard to the well being of your husband, or if it concerns you as well. I don't even think you need to answer that. I think your concerns are clear.

I personally do not have addiction issues. BUT!!! I lived in a home with not one but two alcoholics and lost both to this disease. My "knowledge" which is definitely second hand and obviously personal at that, is to PLEASE discuss this with a professional with experience. I say this with caution. We think all Dr's are professionals and therefor would understand this issue...BUT, I can assure you that very few of them understand the basics of addiction and how it relates to other health issues.

I saw this far too much and learned the difference when a most wonderful /Dr came into our lives when my mother was terminal. His experience and knowledge was tremendous and pretty much negated everything her own PCP thought to be true and safe.

So, I say this as a caution and as a response to your question...it may have NOTHING to do with you personally, but I am answering as if it might...just in case.

I agree that we are all entitled to have our pain treated adequately, but as Kim (VM) states, perhaps for some there might have to be different ways and methods. If this ONLY is in regards to your husband and relatives close to you, I understand that fear as well, and perhaps speaking to an AA representative or two anonymously might help you find ways to treat yourself and safeguard them!

I wish you relief no matter what, and I applaud your courage in looking for help in resolving this. It is never easy for anyone involved, be well!:smile tee

[bridget29]

thanks to everyone who answered my question i am not an addict my husband is in recovery after a relapse and since this post i did get pain meds my husband asked me not to hide them b/c he said this would show i did not trust him so i didnt well yesterday i eas down stairs helping my lil one do h/w i went up stairs andmy husband informed me that he threw my pain mrds in the toilet b/c he wanted them i was very upset and he said look at you you are already dependiing on them i only took a half of vicodin in three days iam at a loss i told him i should not have to live in pain b/c he cant handle his addiction is this insensitive i will call in talk to his counselor thnks everyone iam going to stop typing b/c iam shaking and getting upset again pray for me thats what iam doing ive lived like this for two years in pain iam just trying to reclaim my prelife bridget29

[bridget29]

oh to answer another question ive had the rescue done and the elmiron both meds do not agree with me bridget29

[vm]

Oh my word... :( Well, they do tell us in 12 Step programs that we will come to a place where we can take or leave the alcohol (or drugs) - that the desire will be taken. But early on, as your husband is, is usually not a good time to have stuff like that around with access to it.

I don't know what to tell you about RIGHT NOW, but when you get the pain meds refilled - get a safe. His addiction issues are HIS - not yours. Lock them up so he will not have the easy access/temptation to them, but so that YOU can get relief for your pain. I'm so proud of you for going ahead and trying.

In early sobriety we are on such an emotional rollercoaster. He probably really thought he could handle having them around and then found out later it was too much for him. It sounds like he then tried to lash out at you b/c of his anger at himself and at the situation.

Be patient with him, but also get your needs met. It's OK for you to need pain meds. It's not being disloyal to him and his needs. That's something he will need to speak to his sponsor or to some 12 Step friends about - it is HIS issue. Don't buy into it when he tries to make it your issue, OK? :kissing:

[ihurttoo]

You poor thing! I cannot imagine how you must be feeling! I would be very feeling very hurt, angry, and betrayed. You have every right to feel every feeling that you are. Dont let him make you feel guilty! You have done nothing wrong! He has! It breaks my heart to read what he has said and done to you. I will be praying for you both and for your marriage, and also that God will send you pain free days, and to comfort you emotionally right now.

There are so many things I want to address, that I am not sure where to start! I guess I will just dive in, and type as I am thinking of each thing. .

First of all, while I think the safe is a good idea, I know that locks can be picked, (I have had to pick my own, when I lost the key!) Also, in a desperate moment, he could always call a locksmith while you arent home and tell them he lost his key and have one made. I dont know if he would think of doing either of those things or not, but if he craves them enough to have thrown yours in the toilet, then I suspect that he very well might do either of those things, if desparate enough. So, if you do get one, I still would not put all of them in there. I would only put part of them in there. It is best to divide your meds and put them in differant hiding spots, and possibly even have your mom or best friend hang on to a few for you for safe keeping. That way, if he finds some and takes them or destroys them again, you wont lose all of them. A great hiding place is in your maxipad or tampon box. No man ever would look in there! Also, where I used to live, we had a drop tile kind of ceiling with those squares. I used to push up those tiles with a broom handle and put Christmas presents up there that I needed to hide from my son. These are just a couple of ideas. Also, you can cut a small hole in the seam of a dress or skirt that you no longer wear, and slip some pills in there, and hang it back in your closet. This is another spot that no one would ever think to look. Hope some of these ideas help you!

My biggest fear right now is that the Dr. who prescribed the meds may not replace them. If this happens you may have to go for the next month with no meds for pain. I HATE that this might happen! It is even more likely to happen if this is a new doctor that you do not have an established relationship with.

Also, even if your Dr. does replace them, you will have no room to ever make any mistakes now, such as accidently losing them or having them stolen, even by someone else, b/c you not only would probobly not be believed, but you might also be dropped by this dr. I hope that you are able to have a heart to heart with him and are able to explain to him the results of his actions, and the possible future impact this could have on you.

Yes, he made a mistake. Yes, it was a big one. Yes, it was extremely selfish and inconsiderate of him to do this to you and inconsiderate of the incredible pain you are in. Yes, he handled it very poorly by trying to blame you, and trying to make this your problem. But, at least he didnt take the meds and relapse, that is the only bright side to this. Do you believe him? Do you belive he really flushed the? Or do you think he may have taken some and hidden the rest for later use? Since he violated your trust by claiming to have flushed them, (after guilting you into leaving them out), you have EVERY right to question whether or not he truly disposed of them. Personally, I would want proof, thru a drug test. I think you can buy them at drug stores, if not they can definately be purchased online. Although, I am certain that an arguement will ensue if you suggest such a thing. But, FOR ME, (and I am not you), I would have to know for my own piece of mind in order to trust him again.

Trust is crucial in any relationship, but none more so than marriage. Since he has violated that trust, it has to be earned back, and it sometimes take proof that someone is trustworthy again. I can understand if you dont want to have this fight, (and it would be a fight if you insisted on this!), but if I were in your shoes, it would be necessary for me to know this for sure.

It just upsets me to no end that he would put his own health and sobriety above your health and pain, and THEN try to make you feel guilty, by insisting you not hide it to begin with, and then by saying that you are all ready addicted! His behavior is extremely manipulative to see the least and I would also consider it emotionally abusive.

I hope that you will discuss everything with a licensed counselor, possibly one with expertise in marriage counseling and drug counseling, (if one exists). You need to be able to talk to someone to work thru your feelings of betrayal, hurt and anger. He needs to work with someone who can help him to see that NOTHING he said or did is okay. What he did was terrible and what he said to you was almost worse. Then, it would be beneficial to talk to someone together to help strengthen your marriage and help teach you to speak up for yourself without provoking his anger, and to teach him to talk to be supportive of your needs and understanding of your illness and pain. He also needs to be taught how to communicate without using guilt or manipulation.

Again, I am so, so, sorry that this has happened. If you need someone to talk to day or night, please pm me, and I will give you my number. I dont want you to think you are alone, because you are not! Hugs, Amy

P.S. I just posted your request for prayers on the Prayer request board, and said a posted a prayer for you there. Many others have also posted prayers and support for you there. Here is the link:
http://www.ic-network.com/forum/showthread.php?t=30846

[vm]

Bridget: One of the very best places you can receive support for all of this is in the program of AlAnon. There you will find other men and women who have lived with and/or loved someone with a substance abuse problem and it's a program with a good knowledge base about alcoholism. You'll get lots of advice from friends and family, but unless they have been there and know the disease, it's very hard for them to fully understand.

If you've never tried a meeting you might think about it. Another option is to pick up some of their literature to read. The program can be extremely helpful and it teaches you ways to help yourself and to feel good regardless of what the alcoholic does. Trying to control or change the alcoholic simply does not work and it can make you crazy in the process.

Here is a link with more information:

http://www.al-anon.alateen.org/

[Briza]

So sorry this happened to you. All the ladies have given excellent advice and support. I will only add that I also had to keep very close eye on my meds with my ex, he is an alcoholic and very unepredictable in his actions and behaviors and who knows what to believe. Also there are safes that you can have professionally installed with push button number locks that can't be picked and instructions to the installer that safe cannot be opened or combination changed by anyone but you. Just a thought, as well as keeping a portion of your meds in safe places outside of your house, in locked box at work in Rx bottle, family member's house, etc. My heart goes out to you. You and your husband are in my prayers.

[Mel53H]

Bridget,

I gasped when I read your post. I am so sorry you are going through this. My thoughts and prayers are with you.

Hugs to you,

Mel

[ihurttoo]

Also there are safes that you can have professionally installed with push button number locks that can't be picked and instructions to the installer that safe cannot be opened or combination changed by anyone but you. Thanks for letting us know about those! I forgot all about those! (I used one while on vacation). I am definately going to get one of those tomorrow! :) Thanks again for reminding me of this option!! Love, Amy

[sandi303]

Bridget, Kim gave some very good advice! Speaking from experience, Alanon was a life saver for me & my youngest daughter. Please visit the site she posted - and check into if there's one close to where you live.

You're in my thoughts & prayers....