Young Vet with IC

[MrIC]

I am 26 years old, and was diagnosed with IC 2 weeks ago. I was on one hand relieved to find this web site, while on the other hand it has created some concern for me. My urologist did not explain to me the severity of IC. He made it sound as though after I was finished with the DMSO treatments, and some changes in my diet I would have about an 85% chance of successful recovery. This does not seem to be the case from what I am reading here. I do think that my case may be mild in comparison to some. About one year after returning from Iraq I started to have problems with extreme urgency and frequency of urinations. I fortunately do not experience the pain that some have mentioned on this site. I have three questions. First, knowing that the causes of IC are a mystery, has anyone heard of any other military personel contracting this condition? Second, the pain related to the DMSO treatments is worse than the symptoms of IC that I am currently experiencing. This said are the treatments worth while? Lastly, should I expect to experience more of the symptoms of IC (such as pain) in the future eventhough I am not experiencing them now? Thank you very much to all those who post here. I am glad to have found this site.

[yvette]

Well First off ...WELCOME!!!! Thank God you're back home. Second you'll notice oodles of us are women, don't let that scare ya ;) There's a few guys too and they're great...really helpful.You'll find tons of information here and lots of support and ideas.

Your questions: 1) I don't know of any military personnel that have IC -- hopefully others can chime in.

2) DMSO -- first time I tried it, the pain was sucky, but the results were good. I tried it again years later and....nothing...pffft waste of my time, money and both times the pain from DMSO was awful. I also don't have the pain that others describe. I only have the urgency/frequency.

3) I've done all sorts of treatments...trying them together, apart, revisting them (your body changes sometimes), diet modification can really help too. For myself, I eventually opte for surgery and had the Interstim implanted....I love it, but its really not for everyone.

4) I've had IC for at least 10 years and it hasn't progressed in terms of pain...but everyone is different. I believe tat IC is not progressive for the most-part....there a really small percentage of people whose IC gets worse....

If you can check out the hand book on this site.

Good Luck! :hi:
y.

[vm]

:welcome: MrIC!

Yvette gave some great info - I don't have much to add except to tell you to always remember that the stories you read here will be some of the worst in some ways. Most people with IC do go on to find treatments that help - but once they do they don't typically stick around for long. People who come to any health related message boards usually do so b/c whatever illness they have is currently causing problems and they need information and/or support. The people who feel good don't need the boards. Keep that perspective as you read, OK?

[ICLori]

Hi, Mr. IC, welcome. I'm sorry you have this disease - you are right to be concerned, although there is certainly hope. But it's not a "no big deal" disease as I'm sure you know by now, by how much you've been suffering. It's one of those diseases where, if you can't get the symptoms under control with meds or other treatments, it takes over your whole life.

I can't answer many of your questions, but I can say, there are lots of military personnel who have come down with IC. I wasn't in Iraq but was a Gulf War veteran. I developed IC a long time after coming back home - about 9 years afterwards in fact.

I go to Walter Reed AMC for my treatment and I can tell you there are quite a few soldiers who have had to get out of the military because of IC. Even men, although it's rarer in men.

Not sure if it's more common in soldiers or not.

There have been some studies where they are discovering that this IC stuff is WAY more common than they ever thought. I am reading words like "epidemic" in these studies. Doctors are alarmed by the number of new cases that are appearing, this disease seems to be spreading at a very rapid rate. And I don't think it's entirely because it's being diagnosed - they think there are actually more cases now.

Blessings, Lori

[ICNDonna]

I'd just like to add another :welcome: to the IC Network family. The Patient Handbook is located at http://www.ic-network.com/handbook and contains a great deal of information about IC.

My IC was diagnosed in 1975 and has not worsened. IC is not considered to be progressive --- only a very tiny percentage of IC patients get worse over time. Most of us find it takes time to find the most effective treatments and which foods and drinks are a problem, but most of us do find relief.

When I first started DMSO it was very irritating, but in the long run it has helped keep my symptoms under control. I'm now on a once a month treatment schedule for DMSO.

Sending warm welcoming hugs,
Donna

[harold rosen]

hi i hope you dont have it and if you do its a mild case i will tell you what i know first i have a very bad case of it and when i first went to the doc about 2 and 1/2 years ago he first thoght it was cancer and the did a biopsy he did that 3 times to make sure and ruled that out there are 5 things that have the same symtoms taht have to be ruled out and ic is basicly a imflamed bladder and what i noticed is it effects verybody different and the best thing is to get it under contoled so it dont run your life things that help me drink water only stay away from tomatoes and if it burns when you pee try almondmilk that works with me i hadit so bad i would pee at night very 15 to 30 min and bleed alot with lots of pain i went though 2 docs and found 1 that is on the cutting edge of this and he is giving me starriod shots in the bladder which is real new matter of fact i was told i was the 1st male in the usa to have this done and i had my doubts but it is diffiently working big impovement so there is hope ihope i helped and please dont give up :bonk: :welcome: harold see ya

[MrIC]

Thank you very much to all of you who replied. It is very helpful to hear from others.

[Babs RN]

Mr. IC,
Welcome to the boards. You will find useful information, paths to consider, and while I know guys do the HOOAH thing and suck it up and drive on, we are hear to listen too. I'm glad you made it back safely from Iraq, my hubby just left 1 Jan 05. I am a former Army nurse so I understand the complexities of the military health care issues, especially when you are on active duty with a chronic illness that is different from "run of the mill"(GRRR for people thinking that way). Either you are malingering, trying to avoid a PT test, or trying to avoid going to work. Not of that is ever true(there are those few that jack it up for all). My hubby was a company commander twice and it really stunk for him being married to a nurse cuz I told him that if someone is truly ill and trying he needed to give them a break. I have also endured my first VA appt and eval for compensation and would be glad to share that with you. I have been a child dependent(01), active duty for 4 years(20 aka 66H), and a spouse(Blackhorse 03W)--just jokes to make you laugh. Could care less about hubby's position or rank. I am just me, vet, missing my hubby, mama to Lindsey and have IC. I am here for you anytime. Please don't be shy if you need a shoulder. There are plenty of us that have huge hearts ready to give you support and empathy. Welcome again and good luck as you begin this journey.

Hugs and :welcome: ,
Barb

[Dixiefireball]

:hi: and :welcome: to the ICN family i'm sorry i'm late in replying to your post but i just had surgery and just getting back to the boards.

i'm sorry you have I.C but you will find loads of support here and will notice everyone cares about each other.

I'm very thankful you made it home safely and thank you for supporting the U.S.A your truely a hero!
God bless you

Please check out the website they gave you at www.ic-network.com/handbook its a very helpful site to new comers to ic. even for us older members with I.C its still can be helpful
the ic diet may help you get your systoms under control and the dmso may help kick in elimron. which is very important because you must have something to coat the bladder lineing.
I wish you lots of luck remember we are here and care.
sending you hugs and prayers
Rhonda

[rhea]

:welcome: Hi MrIC-I know this welcome is coming in kinda late, but just wanted to say welcome to the site. I have had IC for most of my life, officially diagnosed 15 years ago but am a "newbie" to this wonderful site. The people on here are very compassionate, wonderful, caring, funny and sincere. Like the others stated, don't let the fact that we are mosty women scare ya off. Oh - and just a quick THANK YOU for all you did to support our country and WELCOME HOME!!

[theclownster]

Hi there! I also want to add my warm welcome to the ICN. It can be challenging to have IC especially at a young age when you don't expect to be faced with chronic illnesses.

My primary symptoms are frequency and urgency and and overall uncomfortable feeling I never used to have. I will say I did not initial think pain was one of my symptoms. However, after getting some meds that are helping me, I realized that I always had a pretty constant low-grade pain that never left. I think over time I got used it and didn't realize I had any pain at all. Now that I am mostly pain free, I notice a huge difference. I also think my inability to get a full night's sleep made my situation worse. Once I was able to get a full night's sleep again - it made a remarkable difference.

Explore your options and come to us for support when you need it.

Hope you find some good relief soon!
Jennifer

[Trying2Cope]

Just wanted to let you know you're not the only man, or military vet, here. I was diagnosed with IC just a few months ago, shortly after turning 40 years old. I used to have frequency/urgency issues, although now it's just painful urination. I left the Navy about 15 years ago, and I too served in the Persian Gulf area, although it was during the Iran/Iraq war. I don't think the IC is a result of anything I came into contact with in the military, but then again nobody really knows what causes it.

You made the right move by coming to this board. I've received MUCH more information and help here than I have from my urologist. Try to follow the diet restrictions if you can, it does help. I still have painful flares about once every 1-2 weeks, but it usually happens as a result of physical activity, not something I've eaten. Sometimes I still get into trouble eating the wrong thing. I recently discovered peanut butter is a big no-no. I used to enjoy my beer and cocktails, but I haven't been brave enough to try those again, mainly because of the meds I'm taking. If you smoke, try to stop. Cigarettes were another big flare inducer for me, although I only smoked every once in awhile, so it wasn't difficult to quit.

I still get pretty bummed about my situation, but then I look at my wife, who's diabetic, and I realize she has more serious things going on than I do. I guess it's how you approach your illness and deal with it that counts. Get as much info as you can, and be active in your treatment. Don't be afraid to ask your uro questions, and question their methods if you don't agree. I put an end to my instillations because I didn't think they helped that much and the catheter was too painful.

Until the day there is a cure, you just have to do the best you can with the treatments and preventative maintenance that you can.

[greghh]

I'm a male too. I'm little suprised that you started with DMSO treatments. My urologist started with oral medications; Elavil, Elmiron, Hydroxizine. I'm taking only the Elavil now and that has reduced my pain substantially. Has your urologist told you about oral meds.

[MrIC]

Just wanted to thank everyone again for all the wonderful support. Things are going well between the treatments and diet for now. I will be checking in often and will hopefully be able to post to someone else's thread, and offer some helpful words.