After 5 years of relief...here I go again

[icnewlywed]

I was diagnosed with IC in 2001 at the age of 17. My symptoms were so severe I was homebound my senior year of highschool. In 2002 I had a bladder dilation and drastically changed my diet to a more "ic friendly" diet. I discovered my main trigger had been onions. To this day if I eat something cooked near onions I have an IC flare. I managed to go several years with flares only about once a month. About 2 months ago I had a kidney stone and then a month ago a very agressive bladder infection. For the past 2 months I have had flare ups daily. I finally had to take medical leave from work the past two weeks. I had another dilation done last week with no relief. I am allergic to antispasmodics which really limits my treatment options. I spend anywhere from 4 to 16 hours a day in the bathroom. I swear everyday the bathroom gets a little smaller. I started dating my husband right before I was diagnosed in 2001. He is a patient man, but I think he has finally reached his end. We were married this past August, and i think now he feels responsible for ensuring I'm OK. We are both worried about me being unable to return to work. I have started considering interstim therapy and have been reading thread after thread on the subject. I'm just terrified that at 24 I will be unable to work or raise a family in the future. It has been impossiple to control my anxiety or depression after having to sit in the bathroom day after day alone. My husband tried to take me on a date to chear me up last night, but we didn't make it 2 miles down the road before we had to turn around because of another flare. The urgency just gets so bad I can't leave the bathroom. I just feel so alone. My mom was diagnosed with IC several years ago, but has a very mild case. I watch my diet (to the point of having a very small menu to choose from), I exercise, I try to control my stress, and yet I still have symptoms everyday :cussing:

Sorry to write such a long rambling post I just needed to vent to a group that may understand what I am going through.

I go tomorrow to have a catscan to ensure there is nothing else going on. I also am trying amitripalee (sp?) and I currently take Paxil and Elmiron. I've had two dilations and severl DMSO treatments. If in a couple weeks I still have no relief I will be looking into doing a test for the interstim. I take pain killers, xanax, and pyridium when i have a flare ( I call it my IC cocktail).

[hdwadman]

Hang in there! I am so sorry that you are going through this right now! I really wish you the best. I have a similar situation. I have been off work for months, and I am afraid that I am going to end up on disability. i can't sleep at night, etc. The only advice I can give is to keep on seeking medical solutions, and try to avoid stressful situations. I will be praying for you!

[bluetou]

((HUGS)) to you. I am sorry for your pain, and the stress you are experiencing right now.
I am wondering if you take a step back and start at square one, and follow all the steps in ways to help alleviate the pain and discomfort of IC. I know you mentioned you are exercising right now...maybe take a break and rest your body. Take a warm bath, try to use the heating pad as much as you can to help your bladder pain. Deep breathe and try to relax through some of the anxiety and stress that is in your life right now. Eat from the ONLY OK list on the IC diet, and drink a lot of water.

I wonder if you just take a few days to gather yourself and try to gain some control back you may find a stepping stone to some healing.

Peace and find healing one minute at a time, be slow and gentle to yourself, allow yourself to nuture your body and I pray you find some future pain free days ahead.

Peace
Blue
:pray:

[SharonA]

:welcome: to the ICN...

I am so sorry that you are going through all of this. I hope things ease up very soon.

You mentioned that you had an aggressive bladder infection a few weeks ago. Have you been checked to make sure that is not still hanging on? Sometimes, these infections can be very stubborn and hard to get rid of.

Are you drinking enough water to keep your urine diluted and make it easier to flush out of your body? Most dietitians recommend 6 to 8 cups a day. I know that when I was first diagnosed, I tried to limit my fluid intake so I did not have to urinate so much, but that is not a good thing.

I also wonder what type of water you are drinking? If you are drinking bottled water, make sure you check the label to see if there is anything added to the water like sodium or other things. I find that I can tolerate any brand as long as it is labeled Natural Spring Water and does not have any minerals, etc. added to it.

If you are drinking your city water, check with the provider to see what, if anything, is added to the water. Chlorine can be very problematic to an IC bladder as can sodium and/or other things.

I have been getting very good results with the amitriptyline (Elavil) for several years. I hope it will begin to help you. It might take several weeks before you see good results with it. I am sure you know that the Elmiron can take several months and sometimes up to 1 year to have maximum results from it.

Stress is my #1 trigger. I am easily stressed, so I really have to pay attention and try to keep myself calm and not take things so seriously. For me, that is difficult but absolutely necessary.

Don't try to see into the future. That is not going to do anybody any good, especially you. Try to take each day as it comes without worrying what will happen tomorrow or next year. You have every chance that you will get relief from the symptoms you are having now. There are so many options for pain control and/or treatments to try.

Don't rush into the Interstim before you try other methods of controlling your symptoms. It really should be a last resort option because it is surgery and they are implanting a foreign object into your body. But, if you and your doctor decide that it is what you should do, than continue your research and read everything you can get your hands on before you proceed. Check out the doctor who will be doing the implant making sure that s/he is experienced with the procedure. Ask if you can speak with those who have used this doctor for this procedure. I know with the rules now a days, that is not easy, but you can ask the doctor to contact patients and give them your phone number so you can speak directly to them.

Which ever direction you decide to go, know that we are here to help support you and help you any way we can.

(((Hugs)))

[icnewlywed]

Thanks for all the feed back. I keep telling my self to relax, that I definetly won't change anything by becoming stressed out.

Here's some answers to the above questions...

I have only been drinking Evian water because it said on the IC diet it was the only OK water...I've only been doing this for about 3 days, no change yet.

I do have a wonderful urologist who has treated me for all 7 years of my IC. He even called last night (on Sunday) to check in and see how my symptoms have been over the weekend. He has worked me into his schedule 3 times in the past 2 weeks and even came in to do my dilation on Christmas eve. He truely is one of the few doctors who is in it to help people. Since seeing him I compare every doctor to him and have yet to find one that compares. However I did find out about a specialist in Greensboro that I'm considering seeing, but wonder if it would be a waste of time since my doc already consults with him about my case. I talked to my doc about interstim today and he was very realistic with me about the success of it. I'm tempted to try the test series for a couple of weeks just because I am so tired of being sick.

I can't believe it took my 7 years to find this site. I feel so thankful to have a place to come and vent with people in similar circumstances. No matter how hard others try, IC is a hard diagnosis for even those with it to understand, never the less those who have never experienced it. I already feel some relief from the responses I received. Thank you for your support, it means a lot.

[SharonA]

Your doctor sounds wonderful. I am so happy that you were able to find a good one. They are worth their weight in gold.

There are some on these boards who report that they can not tolerate Evian. As with everything else about IC...It is totally individualistic how we react to things diet wise or treatment wise. What one can tolerate, the other can not and visa versa. Of only this was not the case. It would make things so much easier for each of us. To me, this is the most frustrating thing about IC. Why does one thing help me and not all the rest of us???

[formom]

Hi there! I see you mentioned you are taking Elmiron. I don't know when you started it, but that can take a few months to kick in. The thing with IC is being patient and alot of trial and error but I am sure you know that already. I hope something begins to work for you soon.

Stress can be a big trigger, so try and relax(easier said then done, I know) but really, you need to. Talk with your husband and explain that you will feel better again once you figure out what will calm this flare.

Big huggs to you and I will pray you feel better soon.

[Adela]

I am so sorry to hear about your daily flare ups. IC is so frustrating.

I think many of us who find stress relief in exercise go there as a way to cope with our IC. It took me a really long time to realize that most health-club type exercise will trigger flare ups for me. It was a major life adjustment for this three X week elliptical skier to switch to ONLY walking, but that certainly helped. I try to take 15 minute walks two to three times a day.

Also, the other big non-dietary trigger for me is sex. Penetration ALWAYS causes a flare and sometimes simply an orgasm will too. Yes, refraining from this type of activity is very trying on a relationship. But it is an important first step to restoring some quiet to your bladder spasming - especially when one is in a "trigger happy" condition (as you are -- probably initiatied by all the anatomical manipulation/stress caused by the stone and infection). My best approach is to abstain until my bladder is quieter.

Also, hydroxicizine (also visteral or atarax, I think are the name brands) has given me great relief from the urgency -- which was my most vexing system, and sounds like one of yours. I had to insist that my doc try it, I brought in an article that indicated it helps many IC patients. It's a cheap med with virtually no side effects, you should definitely try it before doing interstim. It started helping right away for me (immediately slept better) and really showed improvement after three or four months on it.

GOOD LUCK! Let us know what is helping and how you are doing!

[kadi]

Hello,
I'm so sorry, what you're going through is very hard. I'm also one who cannot tolerate Evian water. I also could not tolerate Elmiron, in the two months I was on it I got worse & worse to everyone's surprise. I went back to my previous level of symptoms about 2 weeks after I stopped it. I'm mentioning this in case you found you were getting worse after you started taking it. If it's not bothering you, they say it takes up to 9 months to work, so if it's ok, hang in there with it.

One thought I had reading your post is that you've not mentioned trying rescue instillations at home. Those have given me back my quality of life. If you've not tried them already, they're worth discussing with your doctor. I do an instillation every night before bedtime & if I'm in a bad flare, also one in the morning. My formula is 20,000units of heparin, 5cc sodium bicarbonate, 10cc marcaine, 20cc sterile water, instilled by non-latex catheter & held for an hour before voiding. Several doctors recommended interstim for me before these & I am so glad I tried these before going that route. I'm able to work fulltime, exercise, travel, attend movies & church, wear jeans comfortably. All of these things were either very difficult or impossible before I started the home instillations.

Physical therapy helped me as well. My doctor said he didn't think I had pelvic floor dysfunction, but gave me the prescription for pelvic floor physical therapy & myofascial release because there wasn't anything except clinical trials or interstim left. We were both surprised at how much it helped, not just the IC, but also constipation & menstrual cramps. It's important to find a physical therapist who is trained in pelvic pain disorders & I also found it important to have her create a home exercise & gym exercise program for me, because the staff at the gym are nice, but don't "get it".

Just another few ideas to discuss with your doctor if you've not already.

Wishing you relief soon,

[elamar]

I saw that you wrote that you are allergic to antispasmodics - There are lots of variations out there - just was wondering if you have truley tried them all. Unfortunately with your symptoms, that sounds like the exact type of medication you should be on. I had to use high doses ditropan in combination with urelle to get that constant urge and frequency under control to at least a more manageable level. The ones that I can think of are ditropan xl (generic available), urelle (generic available as utira-c), prosed, pyridium (generic available), pyridium plus, hycosamine and also lots of those over active bladder meds you see advertised - vesicare, sanctura, enablex. I didn't have any luck with the over active bladder meds but then again we all react so differently to meds. It seems that there should be some sort of antispasmodic that has a formulation that you aren't allergic to. Another thing that worked for me after my hydro was a B&O suppository. It is belladona and opium suppository. My doctor won't give them to me under any other circumstances. I've read on these sites that at some point they weren't available for a while, but I think you can get them again as long as you have a prescription from your doctor. That was the best thing in the world after I woke up in agonizing urgency after my hydro. I wish I could use them everyday! I can't think of any other meds that help with urgency. Maybe someone else can chime in with other ideas. I do take atarax at night but don't think it really does much but help make me sleepy so I can get through the night easier. I'm not sure if muscle relaxants would help much in your case. You might want to ask the doctor about low dose valium or something else to help get those spasms to stop. I'm sorry you are suffering. Lord knows many of us have been in your shoes and can relate. I have been battling this for almost 3 years now and I still have days were I'm just like a prisoner in my own home. I used to also spend hours on the toilet. Luckily those days seemed to have passed for me, just the constant pain keeps me inside. I tend to feel worse in the cold weather and when I force myself out just to take a walk around the block, it just makes the symptoms worse. Anyhow, really review antispasmodic options with your doctor and see if maybe something has ingredients you can tolerate. Hope this helps.

[ellenjb]

I am so sorry you are having such a difficult time with your IC. I would ask your doctor about either heparin or elmiron instills (with lidocaine and sodium bicarb). They have really helped me!