Trying to find some acceptance

**Magick** · 03-13-2011, 03:19 PM

So after two and a half years of many different doctors (internists, gynocologists, urologists) I have finally been diagnosed with I.C. My feelings about this are mixed: I am so grateful to finally have a diagnosis but I am dejected that IC doesn't have an outright cure. As for medicines, I took almitryptaline for 2 weeks but the dry mouth was unbearable. I tried the hydroxyzine but it made me constipated. The elmiron makes me feel queasy but I am sticking with it.

Honestly, I feel completely overwhelmed with all the dietary restrictions and get irritated with my boyfriend because he constantly asks me to go out to eat and I don't even want to deal with it. I am so tired of flairing and just want normal urinary function back! Its like IC has taken over my life and I am so afraid that the elmiron wont help and I will have to live with this forever.

I am grateful for this network though and thanks for letting me vent

**playethic** · 03-13-2011, 07:16 PM

Hi
Someone in the forums once wrote to me, 'many of us in her took the scenic route to diagnosis'. Sound like you saw a lot of scenery.
Elmiron can take a bit to kick in, are you with a urologist yet who you'll see ongoing - and do they offer any instillations or other treatments in their practice?
Do spend some time exploring the forums -- there are also supplements (run these by your dr.'s first) & complementary therapies that some have felt really helpful.
Feel free to ask lots of questions in the forums.

***ICNDonna*** · 03-14-2011, 02:05 AM

to the IC Network!

It's very possible to eat in restaurants if you're a little selective about where you go. I do fine if I stick to simple things like grilled chicken or even steak, baked potato with butter only (I order it on the side) --- I even eat pizza, but without tomato sauce. Fish and chips is usually okay. My favorite is the places that serve breakfast all day so I can have hash browns with eggs.

Donna

**Linda May** · 03-14-2011, 02:05 AM

has your uro mentioned rescue treatments or dmso?

**Magick** · 03-14-2011, 06:10 AM

No, my uro has not mentioned rescue treatmenst of dmso. They gave me elmiron and set an appointment for 6 months away to see if it is working. They did say that I should call anytime I was in pain or it was getting really bad. What supplements and complimentary treatments are you ladies referring to? I just feel a little overwhelmed, some days are better than others but when I am in a bad flare I can get discouraged really easily. What exactly are instillations?

And Donna, you are right..there are places to eat but I guess I am focusing on what I can't have instead of what I can. I used to love ethnic restaurants, now I am afraid of anything with seasoning on it.

**bob04951** · 03-14-2011, 06:30 AM

Welcome to the IC journey. Please don't feel discouraged, some meds take time to work, Elmiron being one of them. Some people get relief within weeks, for others, months. You should probably call your doc about the tummy distress, sometimes that just goes away, but in the meantime maybe he can suggest something to relieve that. The dry mouth from hydroxyzine also usually disappears on its own. Instills are where they put a catheter into your bladder via your urethrea and pump in medication. This does help some, and it is something you can learn to do quite easlily at home. Would think maybe it is a little too soon for that, and perhaps that is why it was not mentioned. But do your research on it and if you do not get a lot of improvement or get worse, you may want to speak with him about it.

Hang in there, make your way around this site, google stuff, be informed. There are many, many options. And don't be afraid to eat out, just stay away from the major trigger foods and you should be fine. You can have fries and a burger, just no ketchup. You can have raviolis, but with alfredo rather than tomato. You can have white pizza. Fish, fried chicken, a steak, the list is endless. Don't curl up into a ball and forget about getting out. One of the worst things you can do. You are lucky your man wants to take you out! Take him up on it, you will feel better. And don't be afraid to ask for specific alterations to your food, any cook/chef worth his salt will be happy for a challenge. You will see there are a few here who are feeling better and have been able to add no-nos back in.

Don't give up, don't be distressed (that only hurts more) and everyone wishes you luck as you go down this road. There is relief out there, it just takes time to find the right thing. You will be fine. Jill, wife of Bob

**Magick** · 03-14-2011, 12:02 PM

Thank you for the support. I have also been takin uribel and that has been helping some. As for eating out, I have been afraid to eat burgers because I am worried the buns have preservatives...do I not hae to worry about that?

**cmclien** · 03-14-2011, 12:43 PM

Originally Posted by Magick

Thank you for the support. I have also been takin uribel and that has been helping some. As for eating out, I have been afraid to eat burgers because I am worried the buns have preservatives...do I not hae to worry about that?

,

Hi, it depends on the person. Breads don't bother me at all, its the biggies like coffee, tea, soda, artificial sweeteners, spicy food, vinegar, tomato anything, alcohol, chocolate, citrus etc. Some people are more sensitive and those things will bother them. My doctor gave me a list too and preservatives are not listed though meat preservatives bother alot of people. There are alot of lunch meats/bacon etc that are now preservative nitrate free. Maybe focus on the "biggies" for now since you are feeling so overwhelmed.

The elmiron is easier to tolerate if you take omeprazole or pepcid with it. Elmiron helps alot of people but it can take time depending on how severe your IC is as only a little bit gets to your bladder to coat it with each pill you take.
Hydroxyzine constipation can be overcome by stool softeners (short term) and I find taking magnesium supplements counteracts those effects as so many medicines do that to us. Also flax seed oil capsules will help.

There are other tri-cyclics that have less drying and less sedating side effects, pamelor is one, there are others, they are newer classes of the same types of drugs.

Read through the forums on these various topics and you'll get all kinds of information. There isn't one solution for all of us unfortunately but different combinations of things can help most of us in symptom reduction.

**babygirlh1** · 03-14-2011, 02:32 PM

I'm single and hardly ever cook. I eat almost all of my meals out. I'm with Donna I am a big fan of all day breakfast places. But, there are other options. Once you know what bothers your bladder and what doesn't, it gets so much easier. I hope you stick with the Elmiron. I am so happy I stuck it out.

**Magick** · 03-14-2011, 03:15 PM

I really appreciate the advice, I think I will talk to my urologist about trying a different med besides the amitryptaline. How many mg of magnesium do you take in order to combat the constipation? Do you take it daily?

**cmclien** · 03-15-2011, 01:49 AM

Originally Posted by Magick

I really appreciate the advice, I think I will talk to my urologist about trying a different med besides the amitryptaline. How many mg of magnesium do you take in order to combat the constipation? Do you take it daily?

Alot of people here take nortriptyline, mention that one to him. My husband and I both couldn't tolerate the amitriptyline either but the nortriptyline has barely any side effects at all. Make sure he is starting you at a super low dose like 10mg. "Most" people don't need more then 20mg for symptom reduction.

I take magnesium and flax seed oil capsules every day. I am unusual in that I get REALLY constipated so I take alot of magnesium, around 1000-1400mg a day depending on what meds I'm taking, (but thats just me, you probably won't need that much). You can take it at bedtime or with your meals, I take it with my meals. Taking these keeps me very regular with no problems. Start with 400mg and if that doesn't work the first day, then the next try 600mg and so on because since it draws water into the bowels it can cause diarhea so there is a balance to find between the meds and the supplements. Also flax seed oil caps are helpful in that regard too and very good for you. Costco and target both have them pretty inexpensively. I take 6 of those a day but thats more for my dry eye syndrome then anything else. I think most people take a couple a day. Of course, make sure you eat enough fiber too. I tried different fiber pills but they set off my IC more. I aim for 25mg of fiber a day with beans and blueberries and high fiber english muffins etc. but its just not enough by itself for me anyways.

Hope that helps and good luck with all.

**wtotten** · 03-15-2011, 06:45 AM

How long were you taking Elmiron before you were sure it was helping? How much does it help? I started it a few times, only for a couple of months each time because A) it wasn't helping, B) It's very expensive, and C) it's hard on my stomach. I'm wondering if I should take another go with it.

**sailawaygrl** · 03-15-2011, 07:27 AM

Wtotten,
For me and I know of some other's as well, it took at the least a year to show significant signs of improvement. I know that some that experience stomach upset from elmiron also find that taking it out of the capsule and mixing it with water helps to ease that symptom. I think it is what the capsule is made of that causes many to have problems with elmiron. If it is in your budget, I would say it is worth it to give it a good try.

Magick,
Someone mentioned imipramine earlier and wondered why their Dr had given them that particular med. I have taken it for my IC and honestly had forgotten why I took that instead of amytriptyline or nortryptyline (pls excuse sp). I had taken nortryp in the past and even though it has fewer side effect that the amy I still had a lot of weight gain. So, I did research and found that imipramine works the same way with a lot less of the side effects. I did see some improvement from it. If the other's aren't helping or the side effects are unbarable, maybe you could ask them about that one. Just a thought, maybe it will help.
Sandra
Sandra

**brandymdic** · 03-15-2011, 08:00 AM

I am new to this site.. and am looking for someone or something to relate to.... I was diagnosed with IC recently after many many years of stomache issues and have recently went through the bladder distention and am on one month of Elmiron.. still do not feel much relief.. feel almost like its gotta worse... Tired, run down.. feeling like this is never going to get better... just frusterated... needed a place to vent for people who know what I am going through...

**Magick** · 03-15-2011, 01:18 PM

I am right there with you brandy. Before IC I used to pride myself on being all natural and not taking any medication. In the past month I have filled about 5 different perscriptions and all come with their own set of side effects. On top of that, I feel like most people think I am being "dramatic" and don't understand what the big deal is...its like i'm extra high maintenace!

cmclien:
Thank you so much for the advice, does hydroxyzine work immediately or does it have to build up in your system? I am trying to take as little medication as possible but its hard to tell whats working and what isn't...