Feeling Scared :(

[OllieR]

Ugh my IC is soooo bad. At least recently I have not been very depressed at all, surprisingly, I'm just scared. I see a great specialist and he is going to look in my bladder, but he warned me treatment won't be easy. There's a decent chance he'll take my bladder out.

I just want to be better!!! I sleep a lot. I'm 23, but it's insanely hard for me to get out and do things. I don't work anymore. The doctors and nurses I see keep asking me to be patient, be patient, but I hate that!!!! I have had IC this severe for almost a year now!!! Pain every single day.

And, my medicines cause me crazy side effects. The doctor knows about these, but we agreed that I should stay on them. I tried to go down once and my body actually broke out in hives and I had really bad medical problems (went to the ER of course), because it could not handle the pain and symptoms. Anyways I'm sleepy, can be out of it, one makes me tremor. I was totally embarrassed at the mall last week when I could barely scribble out a check. The cashier was really sweet though, just smiling and waiting patiently. Oh! And the nausea!!! Gross.

I realize when I see my friends my entire life has been interrupted with the nuances of IC. Everything, even a trip to the store, can become this HUGE deal. I feel so out of touch with reality/the world. Anddddd, this great guy and I have gone on several dates but I don't know if it will end up anywhere. I'm starting to get too sick.

I really really hope the doctor keeps his promise to take my case more seriously and urgently. I'm afraid of what the medicines are going to do to me if the "watch and wait" approach continues. I had one medicine that caused me severe mental symptoms and I ended up having amnesia, completely forgetting 2 1/2 months of my life!!!!!

I'm so scared of not getting better. Of nothing being done. I'm not hopeless yet!!! There are more things that can be done but the treatments just take soooo long to put together I've ended up being this waste of a human being trying to hang on a little bit longer. It's depressing (though like I said earlier, picking up some peaceful hobbies like painting, piano playing, reading books I never would have read before, etc. seems to help the depression a lot).

Any advice on how to wait without freaking out? I get so miserable. I can't even be comfortable. My IC is really hard to treat. Oh, and a new thing is that since my IC isn't getting better my pain doctor thinks I'm lying about it to continue seeking drugs and has labeled me a "drug seeker." Last month I had to go into withdrawal before I could get help! I am seeing a new doctor on Monday and am praying they'll help me! K, that's my vent.

[ICNDonna]

I have some concern if you're having allergic reactions to medications and continue taking them. I think it would be a good idea to talk with your primary care physician about your medications --- and a second opinion from a different urologist is something else to consider.

Allergic reactions can be serious.

Warm hugs,
Donna

[OllieR]

Thanks for expressing your concerns Donna! Medications always worry me too. My uro is a couple hours away, but fortunately I have a really good GP. Any doctor who prescribes me medication keeps up with me on a regular basis. After ignoring a reaction once, my doctors made it clear that I am to call right away with any new symptoms and they will call me back as soon as possible to figure out a plan. On top of this, I basically see at least one doctor a week, or more (which is good for my health, but is getting tiring lol). Like I said, unfortunately I have to live with some side effects in order to get enough relief from the IC. At this time, it would be much worst to be off the meds. The ones I am on help a lot and make life more bearable.

I do get pretty nervous sometimes. I'm on a new anti depressant though and it's helping a ton. I have so many fears about my life and IC. When I said I had amnesia and everything from that one medicine I went to a lot of doctors and hospitals and even specialists, and nobody paid attention to me. I later found out when I was admitted to a hospital finally that some of my reactions could have been very harmful. I hated that feeling. So now I am much more cautious about my meds and make sure to talk to my doctor about what would happen if I had a really hard time again (I figure it is much easier to make a suitable plan before something goes awry because things can get pretty hectic. And of course these things always happen on the weekend lol).

I'm having a hydro in less than two weeks to check out the shape of my bladder. What if there are no conclusive findings and I still lack direction? What if, after the hydro, the doctor wants to move very slow or not act at all? I mean, even he agreed there had to be something done about the med situation soon, but I hear that all the time but nobody offers an alternative to the meds. There are times when I literally feel barely able to stand my physical condition (not in a suicidal way though. I just get pretty sad on these days). I'm tired, where am I going to find the strength to go on to this next phase of treatments? Will I ever have a normal young adult life? I think of these things and a million other questions. I feel I've actually been taking it all OK, but my mind can't help but wander sometimes.

So yea, I'm scared. I'm so glad I have this support here. I'm also excited and nervous and really really overwhelmed! *sigh*. Sometimes the IC can just really be a lot to handle you know?

[Mothergoose]

Pharmacists can be a wealth of information, I would talk to the one where you fill your scripts, see if any are interacting with each other, ask about alternatives to meds you are talking.

A friend who lives in chronic pain, was on all kinds of meds and was a zombie, but in time, more than a year I am sad to say, her body got used to them and she can function much better now.

It is best not to worry about the what ifs you will have plenty of time to worry about them if they become reality. Worry and stress makes things worse.

Keep us posted what is found on your hydro.

Hugs MG

[OllieR]

Hey thanks for the advice Donna and MG about my prescriptions. My first instinct was to think I was already doing the best I can with my meds. But then, I probed further and thought it wouldn't be too much trouble to try to switch a couple of them. I will ask my pharmacist and my doctor when I see him next week.

And yes MG, you are totally right about stress and worry making things worst! For a while recently I was told on a daily basis that the IC was all my fault, and a big factor was that I had too much stress or anxiety or I wasn't good enough, etc. I like the way you wrote it. I need to implant these ideas in my mind in a more healthy way and remind myself the IC isn't my fault, but that stressing less will at least help it. I'm going to try, but it's kind of hard not to worry when you have IC lol! I am improving a lot though from how much I worried about things earlier this year.

[KathiB]

Ollie, just checking to see how you're doing. Did you have your hydro? Did it help? Did you switch any of your meds? This disease is such a mystery sometimes, trying to figure out the best combo is so tough. Hang in there and know that you are not alone.

[melanie626]

hi

OH Ollie,
FIrst, I love the idea of folding 1000 paper cranes, where did you hear that?

Ok. So with meds, yes, scary so read the side effects and give them a try while talking with your GP and Uro/ pharmacist. I know getting the right "cocktail" is hard with IC, I do.

I also know the desire to get things rolling and how hard it is to wait. I am getting near removal but trying "one more thing" to see if it gives us more insight into if it will help with is a superpubic catheter. We will see.

I agree that getting some good mental health support and doing the things you like will help. I suggest pacing yourself over and over again. I know it sucks and plans can change your day but it also is nice to be kind to yourself to and remeber this is a hard illness and your doing your best.

How are things after your hydrodistension>? Did it help?

[OllieR]

Hey! I haven't been on the ICN for awhile! Shortly after I wrote this thread I had my hydrodistension, which wasn't great, especially for my age, but not as bad as the uro thought it could be (worst case was that it would be almost gone and we would have to build a new bladder a.s.a.p.) But things are serious. Recently, after the hydrodistension I have been in a lot of pain, often going to the bathroom every 10 minutes trying to get just the tiniest bit of relief. He did send me to a pain clinic that is *way* better. Since then I've had almost all my medicines changed (again lol - but this is a good thing as Donna and MG have mentioned), had the interstim in and out - even though before we weren't sure this would work anyway (fail), and a couple nerve blocks (success, but not enough yet). After the Interstim fail I got a suprapubic in. All this is 3 hours away from my house so I am traveling all the time. Since the IC itself has caused horrible amounts of pain for me for a long time I'm a bit tolerant to the medications and so all this stuff has hurt beyond all belief!!! I don't know what will happen if I have to have my bladder taken out, but I guess we're hoping either way I can at least go down on my meds while I have the catheter in.

So now I have the suprapubic. I can't believe you wrote that you were getting it too Melanie! Even though you wrote that a couple months ago I hope you still see this thread and let me know how it is working for you. I am finally nearly completely over with the surgical pain which is good. I like how even when I'm in pain I don't have to go to the bathroom every 10 minutes like I was doing before this. I was actually able to go drop off/wait for/pick up my own medicines at the pharm. yesterday without having to worry about using the bathroom 2-3 times. It was an exciting trip, which is kind of pathetic, but oh well. Are you having problems looking at the site? The place where the hole is kind of grosses me out (it's not infected). I keep it covered by gauze most of the time and don't like changing it lol. I probably just need a little longer to get used to it.

I guess at some point I'll have the diversion reversed and we'll see if giving my bladder a rest helped. I'm basically through with all the current stuff. Except the one thing I haven't tried yet is CyA. Neither the dr. or I are very sure about it because of my problems with being sensitive to drug side effects and the problem of it being an immunosuppresent while I have been going in and out of the OR. Have you tried that Melanie? I know it's kind of experimental.

Oh, and my depression and anxiety went away after having an IUD removed. :o)

[Daisy Mae]

Ollie I hope hings are going well for you, it sounds like you've been through soo much!! Glad you're pursuing treatments.
Something you posted really made me want to mention a couple of things that may be helpful to those who are dealing with a lot of pain. Jill or Donna please let me know if this seems out of line. I just have a few recommendations for people who feel they are being considered "drug seekers." This is based on my experiences as both a patient and a nurse.
1. Use the same pharmacy for everything if at all possible. Staying with one pharmacy will help you keep track of what you're on, of course, but can also help you avoid dangerous interactions. Pain mgmt docs don't like seeing patients use multiple pharmacies.
2. Speaking of pain mgmt, I highly recommend IC patients have a pain mgmt doctor. If you dont' have one, it's a great idea to discuss it with your primary physician and urologist. Sometimes pts feel as though their doctors are accusing them of being drug seekers because they don't like to write for narcotics. The truth is, docs who don't specialize in pain take great risks when they prescribe long-term pain meds. They are being more carefully scrutinized by the DEA than ever. They often prefer their patients to be with a pain specialist so that they can be safely treated by someone who deals with this on a regular basis.
3. Don't get prescriptions for pain meds from multiple doctors if you can at all avoid it. It can be perceived by some doctors as sneaky,as if a pt is attempting to manipulate the system. (I totally get it, though, when you're in misery it's all you can do to make it to the ER and then when it runs out ask your primary, etc.)
4. Be honest with your physicians. So many of us try to say what we think the doctors want to hear or what will convince them we're legitimately in pain. Sometimes it's better to just look them in the eye and tell them exactly what's on your mind. And it's okay to ask your doctor why he doesn't want to prescribe something for pain and what he recommends you do about the pain that's interfering with your life.
5. Be open to other options in addition to pain meds. In the hospitals we've learned to be leary of patients who insist they're allergic to tylenol, advil, can't use heating pads because of skin irritation, don't respond well to other options, etc. Some insist they ONLY respond to demerol or dilaudid. Doctors and nurses make recommendations for a reason: to use multiple methods of trying to get you some relief. Say yes to things other than narcotics also and they'll be more likely to realize you're truly genuinely in pain. Most of us who have severe chronic pain know what I'm talking about. You'll try anything!! Most IC patients will sit on a heating pad or ice pack, drinking water in small sips to swallow their pyridium and pain medicine, take prelief, pray, and even fold paper cranes just to find what works!! ; )
Like I said, these suggestions are based on my own experiences, both personal and professional, but may help. The main thing is keeping an open line of communication with your physicians. Always, always report side effects or reactions immediately, even if you thik they're small. They may be significant.
I wish you pain-free days!!!

[Mothergoose]

I just wanted to say, I have an allergy to generic tylenol, I will take tylenol but it has to be Mcneil brand, so it is probalby a filler I am allergic too.

I was in the hospital and the Dr. had written orders I could have T#3, when they were brought to me, I said I am allergic to the generic brand could I have a name brand one, I was told no the hospital didn't carry anything but generic.

I asked if there was anything thing else I could take and was told no, only what Dr's orders were. I understand this, I explained that if I took it I would have a terrible migraine in about 1/2 an hour and then would really be in pain.

This nurse gave me no option take what she had or be in pain from surgery, so I took the generic T#3, sure enougha while later she was calling the Dr. for the excurciating migraine I had and was giveing me a shot of Demerol for that, which was over kill for the surgery pain.

I really felt she would not call the Dr. because she didn't believe me, even though it was written on my file. Now it is written in bold red letter's on my file no generic tylenol.

When telling my gp about this he said you wear a medical alert braclet anyways have that put on the bracelet. He flet Dr's and nurses would take it more seriously.

But the things we have to go through, it was not like I wanted something stronger just different.

MG

[Daisy Mae]

Aww, Mothergoose!! That's not fair!!! Remember you always have the right to refuse any med! Although it sounds like you tried to do that, in a reasonable manner, but it didn't get you anywhere. You didn't come across as a drug-seeker, since you wanted Tylenol, just not the generic kind.
It seems like when you're just right out of surgery you shouldn't have to fight so hard to get pain relief. Anytime that happens in the future, if it seems like the nurse isn't working with you for some reason, you can always ask to speak to a charge nurse or nursing supervisor. You were right to stick up for yourself, I'm just sorry you weren't heard. I hope you're feeling better!!!

[Mothergoose]

Thank you this was a while ago, and I have learnt much better how to stand up for my rights.

The Dr. was mad when he heard about it, and said it would have been fine for the nurse to call him to change the orders. To me she just didn't believe I couldn't take generic Tylenol.

My mom who won't take a reg Tylenol unless forced too hurt her shoulder, she has never taken any pain meds in her past to speak of, she got a Rx for T3's took them and they did nothing for her at all, she went back to her Dr. who believed her and wrote a Rx for something similar but different somehow, she went to her normal pharmacy to fill the Rx, they filled it with the same T3's they had filled the day before, she ask if it wasn't supposed to be a different med, the pharmacist reply was yes but we don't carry that so he had substitute it with this. She said they don't work for her, or do you think I took all 50 I got here yesterday.

She finally asked for her Rx back and went to another pharmacy.

Both of my son's have trouble too, one at 16 had his wisdom teeth pulled and was told to take t3's and Advil, I said he can't take any NSAIDs, each time he has tried taking it I have ended up taking him to the ER for abdominal spasms, so the dentist just rxed him T3's. I didn't know they had no effect on him till we were on the highway headed home. The next day our Dr. rxed him percocet which worked fine, but he sure did suffer that one night. My older son is the same although he can take NSAIDs but T3's have no effect on him either. They don't actually need anything stronger, just not that medication doesn't work for them.

We are all different. MG

[Daisy Mae]

I'm just back here catching up on some threads and wondering if you have any updates? How are yall feeling?
I've been in the hospital since last Friday, have a foley in which has done a great job of giving my bladder a rest and having strong pain meds to help me cope. They're also addressing other issues like inflammatory arthritis, connective tissue disease, sub-therapeutic blood levels on my blood thinners, etc. so this is giving me a great chance to break the pain/inflammation cycle.
I hope all of you are doing better. Take care! Hugs!

[melanie626]

Hi

Daisy Mae hope you are well.

I am a mess and a half. BUt in a fairly good way. My S/P cath was done with a hydrodistension and botox (why, I have no idea) and it came out day 4, by day 6, couldn't pee. Not good. Knowing botox doesn't help with pain any pee would make me want to cath so I went to the local ER since my URO is 2 hrs away and got a nice small foley (10 fr).

Then called MD, he had me do a test, it seemed like it was out so I pulled it (very easy, no pain) and a big ball of good on it no wonder it stopped working.

SO the urethra is raw and flaring and mad and spasamaing from the foley, and still getting over the hdyrodistension but NOT PEEING ROCKS. I go back on Dec 5 to re do the s/p to really mimic a diversion and god willing we take this thing out. My hydro had my volume down over 200cc since my last one! sad

Thats my upate.
Cheers