Newly diagnosed male with IC

[RoyG]

Hi all

I'm newly diagnosed with IC. Sysco/hydro last monday, still painfull. I see my Urologist next monday for results/treatment but I've been looking in the ICN site for a little while because he was certain that IC was indeed the problem (despite the fact that I'm male).

My problems are two-fold. Firstly any form of catheter is too painful - so distallations are out. Secondly I'm British and it appears from my trawling of the web that Elmiron is only available in the U.S.

Can anyone tell me if Elmiron (or any form of bladder coating) is available in the U.K? What other oral treatments have you found to be of use? Any information would be helpful.

[Katrina]

Well the bladder coating of altnerative therapy CYSTOPROTEK which is available in the ICN store http://ic-network.com/cgi-bin/ustorekeeper.pl?command=goto&file=Alternatives.html
:welcome: :welcome: :welcome: to the ICN! I am sorry you have IC and are have the problems you do with treatment. :grouphug: I can't tell you what is available in the UK...I recommend making a post about needing info from someone in the UK ...others from the UK do come to this site and may be able to answer that question. I will give you my full pain relief ideas with links to thinks in the store. Let me know if I can help you anymore. :grouphug:
IC Pain Relief Methods (This list put together by Katrina) Remember I am not a doctor and you should always check with your doc before trying theese. Note that it may take cobining a few of theese to get the help you need.

This list is for when you are already in pain


• Ice/Cold (I believe alternating between hot and cold is best)
o Ice packs
o Ice
o Cold spray water
o In a water bottle
• Drinking almond milk
• Drinking baking soda and water mix or alka selser (about 1 teaspoon baking soda per glass)
Taking alkaselser Gold
• Herbs
o Marshmallow root (althaea officinalis) helps sooth irritation and inflammation due
o Licorice (glycyrrhiza glabra and g. uralensis) good for inflammation and anti allergic but should only be used short term
o Uva Ursi (arctostaphylos uva-ursi) is an antiseptic of the urinary track also used as a diuretic, also for inflammation…also only for short term use
o Black Cohosh (cimicifuga racemosa) not good for me since has similar effects to the hormone estrogen. Is used as a sedative and to relieve menstrual cramps. May have anti inflammatory effects. Avoid large doses.
o Catnip (nepeta cataria) eases menstrual pain, soothes the nerves, and as a sleep aid.
o Chamomile (Matricaria chamomilla) mild sedative, creduces inflammation, relieve menstrual cramps, http://www.ic-network.com/cgi-bin/ustorekeeper.pl?command=goto&file=Foods-Tea.html
• cornsilk tablets are unreal!!!!!
• Drinking a burger king milkshake
• Resting/relaxing (some goes as far as to say laying down….at times I could only lay on my side)
• Acupuncture
• aroma therapy (either in a warm wash cloth across face, in a bath, inhaled from a bowl of steamy water, vaporized on an oil burner, sometimes candles, applied to the skin, or taken orally)
o almond oil
o lavender
o lemons oranges
o all essential oils
o honey
• reflexology
• physical therapy
using a donut pillow
• Yoga mine see , ICN: (http://www.ic-network.com/shop/)
• Prilosec OTC or something...not so much for pain but because it is newly non prescription acid reducer
• Water (drinking plenty of water helps with burning pain and helps dilute urine so that it is less harmful to the bladder wall
• TENS unit Ask your doctor for a TENS unit. A TENS unit is believed to work by providing another source of stimulation to "divert" the brain from paying attention to your bladder. It's based on the spinal gate theory. Some patients find TENS very helpful while driving, or in situations when a pain medication isn't appropriate.
• Migraine Ice Patches
• Tylenol with 4 Prelief (many non prescription meds can hurt the bladder….be careful and watch out for what bothers you) http://www.ic-network.com/handbook/nerve.html
• Topical analgesic…Menthol example ICE Blue Gel
• Heat
o Thermal Care Heat wraps
o Heating pad (http://www.ic-network.com/shop/)
o Thermal care adhesive body warmer (http://www.ic-network.com/shop/)
o Spraying heated water
o a microwaveable pad (http://www.ic-network.com/shop/)
one of hubby's tube socks filled with uncooked rice. I just microwave it for about a minute and it's pretty hot. It's pretty flexible if you're trying to heat in between your legs.
• Extra Prelief (http://www.ic-network.com/handbook/prelieffactsheet.html)
• Taking a shower or Tums if your desperate
• Warm Baths (NOT HOT!!!!) No bubble bath or strong soaps, please! Soft soaps, perfumed soaps, bath salts & bubble baths can be very irritating to an IC patient. However, you can put baking soda in the tub for extra comfort. SITZ Baths Definition: A sitz bath (also called a hip bath) is a type of bath in which only the hips and buttocks are soaked in water or saline solution. Its name comes from the German verb "sitzen," meaning "to sit." I recommend: (a tub divided into two …one half is filled with hot water and the other cold. With part of the body on one side and than switching and back again in quick succession) Recommended 3 times a day for 20 min each
• Foot baths
• Visualization [relax your mind. Make sure you are warm and comfortable, and practice deep long breathing, concentrate on the rhythm of your breathing, as you breath imagine the air going in and out of the painful area (such as the bladder), As you inhale, imagine a warm glow healing the pain, and as you exhale, imagine the pain being expelled. Next imagine your pain as a red ball, now take that wipe it with your washcloth, as you wipe the ball gets lighter and lighter in color, keep whipping until the ball is white.] That was 2 examples do what suits you best.
• Trying things to distract you
o Listening to music
o Watching a movie or TV (some choose to have tapes ready for late night flares)
o Reading
o work on a craft or project
o spending time online
o writing letters
o Working around the house (Do what feels comfortable to you. Don't push it.)
o Being constructive and helping others
• Venting here or to friends
• Hugs
•
• Praying
• Staying positive….believe the pain will end
• Meditating (http://www.ic-network.com/handbook/meditation.html)
• Ask for help if you need it (family, friends, doctors)
• Instillations (http://www.ic-network.com/handbook/instill.html)
o DMSO
o Heparin
o Marcaine
• AZO for Urinary Pain Relief or URISTAT
• Ask for a foot message from your spouse or partner (actually I think it is the receiving one that helps with the pain :)
• Pain meds patch (such as fentanyl)
• Pain meds oral (Remember, the earlier you catch a flare and pain, the easier it is to stop and the less medication it can take to stop it. So, don't wait until you are crying and desperate... because that allows that pain cycle to get firmly started. Try to catch in early!) (http://www.ic-network.com/handbook/painmed.html)
o Oxycontin (Pain med’s are recommendations from other ICers)
o Pyrradium
o Perocets
o Klonopins
o Neurontin
o Codein
• Cold water in a balloon in vagina
• Taking slow deep breaths/other breathing therapies (http://www.ic-network.com/handbook/breathing.html)
• Practice relaxing the muscles near the bladder
• Put some work into lessoning your stress
o Use art to help visualize and express your stress…you can even use it to visualize and than erase your pain
o Spend time with your pet!!
o Play with your children or with children (if you have none of your own)
o Sing (you don’t have to let anyone hear you)
o Listen to a guided relaxation audio tape to relax your body. Commonly available at book stores, we recommend the tapes by Potential's Unlimited (Barry Konicov). If you can't find those, try the Health Journey's series of tapes. [http://www.ic-network.com/shop/]


NOTE: AS WITH ANYTHING BECAREFUL….AND IN RISKY THINGS ASK YOUR DOCTOR BEFORE TRYING NEW PAIN METHODS!!!!!





http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post. The second page has 4 attachments...the last one is a list of ideas for IC pain.....take a look if pain is problem for you

http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!

[SharonA]

:hi: and :welcome: from across the pond and from the land of :elvis:. Not a big fan of his but love that Smilie. Good to have you with us. I am on Elavil and have found it to be of substantial help for me. :)

[Iris]

Hi and welcome to the IC family, I also am on Elavil, and have found it has helped me so much. Katrina's list is wonderful and gives you plenty of information. Hope you will keep us posted and let us know how you are doing, welcome hug, Iris. :hi: :welcome: :grouphug: :flower:

[ICNDonna]

First of all, I'd like to welcome you to the IC Network. You'll find a lot of information and support here.

I suggest you read the information in the Patient Handbook at http://www.ic-network.com/handbook --- there's information there about the various treatments and medications.

And if you're wondering which ones are available in the UK, there's a drug glossary at http://www.ic-network.com/glossary --- which tells you what the various medications are called in other countries.

I hope this will be helpful to you.

Warm healing thoughts,
Donna

[vm]

:welcome: It is so nice to see a male "face" here. Please stick around! :)

[Daniel]

Roy, I can relate about the cathoders. I cannot imagine my self having an instillation, even if I really need them...I have had one in my and removed and it was unbearable. Cathoderization is intensely painful I am sure for most men.

[tired of this]

Sorry to hear you have IC, but glad you came here. We need some more guys on the board. What have your symptoms been like? A lot of what people post hasn't really applied to me being a guy, and I am curious as to what trouble you are having.

This message board has really helped me so far, and many are very helpful when you need them.

Good luck with your appointment.

[tigger_gal]

HI Roy,
so sorry you have IC, but ~~~~WELCOME~~~~ to our happy home.. you will find a wealth of info thu-out the boards.... Nice to have you join us... looks like Katrina really filled you in there..
hugs
Brat

[kelly McC]

Hi and welcome to the ICN,
Good luck with your appointment and finding a treatment that works for you!
Kelly

[RoyG]

Hi all

Thanks for your messages.

Saw the Uro yesterday, having finally discovered the situation with Elmiron. It is available on a "named patient" basis in the UK -- i.e. it's not licensed but can be obtained, both patient & consultant accepting the risks. Anyway, I'll start on it next week.

My consultant is also prescribing a drug which isn't on the ICN list, apparently the main purpose is for the treatment of stomach ulcers! I can't remember the name but I'll post next week.

Hope I get some relief, because I can't move far from home - scared of getting stuck in traffic. The abilility to urinate standing up is NOT a benefit - particularly when it can take 10/20 minutes to start, although I'm desperate to go.

Regards to all

Roy

[mayray518]

welcome roy. I am sorry you got diagnosed with IC but we are here to help. That's strange I can remember calling the UK in 1994 (before elmiron was approved here) and they told me it was available there. Maybe I misunderstood maybe it was on a first serve basis as you said. I believe there are other countries in Europe who have it plus the US and Canada.

[mayray518]

:toilet: welcome roy. I am sorry you got diagnosed with IC but we are here to help. That's strange I can remember calling the UK in 1994 (before elmiron was approved here) and they told me it was available there. Maybe I misunderstood maybe it was on a first serve basis as you said. I believe there are other countries in Europe who have it plus the US and Canada. :toilet:

[XoChelsey03Xo]

Hi Roy and welcome! Chelsey :)

[sparky50]

hey Roy, Welcome nice to know other men are out there as well. Keep in touch You are not alone

[Imustpee]

:welcome: to the board...

[green_the_fish]

Hi Roy! :hi: Welcome to the ICN. I think you'll like it here, you'll always be surrounded by ladies! :lmao:
Hehe, not really, there are a few other guys on here :)
These boards are great, I always learn a lot by coming here. I hope you will as well.

[shennan]

i get headaches from elmiron, so i take freeze-dried aloe vera capsules and quercetin/bromelain. aloe vera is suppose to coat your bladder in the same way as elmiron, supposedly.

you can find these on http://www.ic-network.com/shop/
look at cystaq and there is another product here for men.
you might be able to look up farr labs and get a free sample of there supplement. have to pay shipping. http://www.prostaq.com/
see if you can get this one or the cystaq. ask for a sample of each. give it a try.

desertharvest.com, too.

i started elavil for pain, joint/bladder and body.

good luck.

sorry you have ic. yes, men get ic, too.

shenna




:cat:

[carrie desanto]

I am new to....I have empathy for you. I was recently diagnosed. Still confused of the role pain meds have?
Carrie