Men with IC - need advice and support!

[lovemyicman]

Hello all you dear souls,
This is my first post, so forgive me if I ramble a little! Firstly let my say that every inch of my heart goes out to all of you who are suffering. You are in my prayers, and please know that there are so many people who would just reach out and hug that bladder of yours if we could! My fiance was diagnosed in January with IC after having been in unexplicable pain since July of 2007 (the pain started ON his birthday, can you believe it?). After reading on this site so much, I see that his symptoms are not quite as extensive as some very severe cases, but they are enough to have brought his positive and blissful universe to a screaching hault. His symptom has predominantly been CONSTANT PAIN. He feels pain in his bladder on some level 24 hours a day. During a flare, his pain will be worse and his frequency will be greater, but even off a flare, he constantly feels pain and pressure in his bladder. He has had no genital pain or orgasm pain, just pure bladder discomfort. Since we have known it is IC, we have cut out all caffine, citrus, tomatoes, fruit, chocolate, beer, and all other stuff that we know hurts him. We have even tried ONLY baked chicken and potatoes with absolutely no seasoning for days, and he still has some level of pain. We tried elavil, but it made him more depressed and just didn't treat his mood well, and even 10mg didn't really take away the pain (we're waiting to try a higher dose as a last resort). Since March or April he has been on Elmiron 2x2, clonazapam as a pain med when needed, and Allegra (we were told by our uro that Allegra is the only antihistamine without sedative affects). So basically, here are my questions for all of you, but if there are men out there with a similar story, please help!
- is Allegra the same as Hydroxyzine (meaning, as strong?)
- does everyone with IC ALWAYS have some level of pain? Is there anyone who has completely gotten rid of bladder pain?
- what is an example of a strict ic diet - seriously, I want daily details ;)
- has anyone ever flared because of prelief
- i just ordered cystoprotek- has that taken away all pain for anyone? and i've gotten him pure aloe vera gel to drink with it (it has nothing but aloe vera, no acid or other chems)

I'm sure I have more questions, but I'll wait for other days. I'm heartbroken over my broken prince, so any advice or comfort is SO SO SO SO dearly appreciated. He's been in chronic pain for a year, and I know compared to many of you that's small beans, but I just want to help him so much. Thank you so much in advance for your replies and kind words.:pray:

[turnaround]

What a wonderful gift you are to your guy. Seriously wonderful.
The first year I was diagnosed with IC I had some level of pain always. I strictly followed the diet and took Elavil 5mg. in a.m. and 10 mg. at night. After about a month, I really started to feel better. I ate pretty much just what was on the IC diet until I felt less pain. I also added Glucosamine MSM which I believe really helped my IC. Also, I take Uristat otc when the pain is bad. It really helps me. Also 1 tsp. baking soda in 8 oz. of water 3x a day has reduced the acid in my urine.
Things will get better. You are really going to be a big help in his battling of this nasty disease. Good luck to you both!

[5andi]

I’m really new to IC; I was just diagnosed in May, but I can answer a few of your questions. Allegra and Hydroxyzine are not the same drug,. Both are antihistamines, but Hydroxyzine is generic for Vistaril or Atarax. Hydroxyzine is also a weak analgesic and used for anxiety. You’ll see Vistaril and Atarax in a lot of places as a treatment for mast cells, a suspected irritant.

I’m on Vistaril and it helps me sleep through the night; I don’t get up as much to run to the bathroom.

It sounds like you’ve already found your prince to be affected by many foods. Here a link to an IC Diet listing on this site:


http://www.ic-network.com/diet/dietcheatsheet.html (http://www.ic-network.com/diet/dietcheatsheet.html)

My best advice is to read labels carefully. Most processed foods contain preservatives that can and do affect many IC patients including myself. My husband and I just grilled a steak tonight. Ron took a bit and said it tasted salty. I hadn’t seasoned it while grilling - hmmmmm. I pulled the packaging out of the trash and found out the steak had broth, flavor enhancers and several preservatives. This came from the fresh meat section at the grocery store! I’m only shopping at Whole Foods (organic supermarket) from now on. Read the labels even with organic products, citric and ascorbic acid are frequently used as “natural” preservatives.

[leelee88]

I really want to applaud you!! and say :welcome: I think it is wonderful you have came here to find ways to help your prince!!.

As far as the IC diet, I stayed on it pretty strict for a long while to get my bladder calmed down and drank nothing but water and milk. I slowly started adding things as my bladder started calming down..I knew my triggers right off. What helps is to keep a diary and chart things down that he can have and what his bladder reacts to.. I would stay away from anything in the MAY BE OK just until things calm down. here is the link for that chart:

http://www.ic-network.com/handbook/diet.html#topfive

As far as prelief I use it when I eat something I am not sure about, like when I eat out. Here is something you might want to read on Prelief:

http://www.ic-network.com/handbook/diet.html#acid


I do not know about if Hydroxine is stronger than Allegra but if that is a problem he can always take it at night, this is what most ICers do. It also helps them sleep. I am the opposite lol it keeps me awake.. grrr Now you said that he has trouble with Elavil, I had reactions with it also and my URO gave me Tofranil it is in the same class of meds as Elavil but it does not give me and Neg side effects. So this might be an alternitive. There have been alot that have reported doing well on cystoprotek. I am on glucosamine/MSM and doing pretty good on it, but still have flares.

Here is a link that might help your sweety it is just for men here on the ICN:

http://www.ic-network.com/men/

And while IC is very painful and can not be cured, please keep encouraging him that it is treatable and he can get to a point of relief!!

[ICNDonna]

You've already been given some good advice about where to find diet information. I think it's great that you are supportung your loved one.

When you read these forums, it's important to remember that for every individual posting here because they are in pain, there are literally hundreds out there who feel good and don't have a need for the support of the boards. It can take time to find the most effective treatments in any individual with IC, and it can also take time to identify which foods and drinks are a problem --- but most of us get there --- and most of us feel good most of the time.

Donna

[lovemyicman]

Thank you all so much. Great advice so far, and thanks to what you have said, he is now keeping a food journal and is agreeing to a very minimal diet until the pain is controlled. It's a tough adjustment when you're diagnosed with something. I've found that some people put the treatments off so long because they just don't want to think about changing their lives, or admit to having something they have to change for. But with constant confirmation from the people on this site, I believe he is going to really start listening and focusing on the healing. He has always wanted to, but sometimes wonderful people just want to beat it with their minds. And he has a wonderful mind....:smile tee Thanks again for the links!

[Wolfe]

If I watch my diet, I don't have that much pain. Also, I take Elmiron, and that has helped a lot with all of the symptoms. Stress seems to be my biggest flare causer.

If your guy needs an antidepressant and Elavil doesn't help, imipramine (generic for tofranil) is wonderful. It is frequently prescribed for bladder problems, kind of "numbs" the bladder. I looked for an antidepressant for years, and not even any of the tricyclics worked for me without causing a flare -- until this one.

Kudos to you for your support of your man.

[SharonA]

:welcome: to the ICN to both of you. :)

[NewLife]

Is he doing anything for stress management? Stress is a huge factor for me. I had to cut all stress factors out of my life. Now, my husband drives me to work because I don't want traffic to aggravate me, I try to take it easy at work, then he takes me home (luckily, he works nearby and I don't have to travel for work) and all I do at home is relax--light exercise, reading, cooking, walks, TV, etc. Same for the weekends. I also had to limit stressful social contacts. As soon as I get stressed out or even excited about something positive, I get a flare! Perhaps stress is the cause of your fiance's flares?

As for other factors--perhaps he has a hidden food or chemical sensitivity. I would suggest eating natural/organic and only the "ok" foods from the IC list. Even if he feels better for a couple of days, he should not be tempted to try unsafe foods because their effect is cumulative! It used to be that, as soon as I god better, I started drinking coffee, eating pizza, etc. and I would get a flare again a week or two later.

Also, I would suggest looking into low-histamine diets. I got a flare once from a perfectly safe IC lunch--mushrooms, eggplant, and potatoes and then I found out that eggplants are high histamine. I try to avoid high histamine foods for now.

As for a typical diet: some safe breakfast foods for me are farmer cheese w/blueberries, bagel with plain cream cheese or oatmeal with brown sugar; lunch: carrots/lettuce/cucumbers + eggs or plain chicken or beef and unseasoned grains, such as rice, quinoa, buckwheat, etc. Only water, occasional milk and hazelnut milk as liquids. Try to avoid processed foods and foods with additives at all costs.

The fact that you mention that he gets flares from Prelief and antihistamines don't seem to help much make me think that he might have a chemical sensitivity. I actually read a story of a male who developed IC after taking OTC anti-histamines for a while. Of course, I am not a doctor, and this is just a personal opinion, but perhaps he could look into ingredients in his pills, supplements and their capsules to see if there is anything that triggers his symptoms and whether he could stop taking any of that for a while if his doctor agrees and see if that makes a difference.