Newly Diagnosed Male Need Direction

[ScottR]

xxx
I was diagnosed with IC 2 weeks ago but have had symptoms on and of for 15 years with 3 major flareups the third starting 2 months ago.
My diagnoses from a Urologist two weeks ago was made solely on my past history and a digital prostate exam. I did have a Cystoscopy and IVP during my first flareup and my present Uro. knows this.
After all the Drs. I have seen in the past, this was the first time I had ever heard of IC. I was always told "You just have an overactive bladder." If I would have had a correct diagnoses I could have corrected this 15 years ago.
The treatment plan from my urologist is to take 8 Tums a day 2 with each meals and 2 before bed and come back in three months. The Tums gave me some immediate relief but then the IC came back.
My first flareup ocurred when I changed my diet radically from a dairy based vegetarian to a plant based diet (lots of tofu and tomatoes). I mention this last part since I noticed that some people have mentioned a trigger by extreme diet changes.

I have a couple of questions:

First: My Urologist has a horrible bedside manner so I am looking for a new one fast since I am waking every half hour at night urinating. The only Uro. that is familiar with IC in my area is a female. Since I am male, I was wondering if it would be better to find a female Uro.
Second question: Does the course of action that this Uro. i.e., the diagnosis and treatment he has given seem normal compared to what you have all gone through.
Third question: Diet; Since I am a vegetarian following the IC diet will have me eliminate almost 80% of what I eat. I have lost 10 pounds already in 2 weeks and I weigh only 150. Should I be working with a nutritionist?

Fourth question: I don't have any pain as described by many on these boards except for a low throbbing pain just under my left Kidney (which I notice that a couple of people seem to have). My only really bad symptom is urinating all of the time which in the day I can handle, but night forget it. I am starting to run on empty.
I hope I made clarity out of my message which on 6 hours sleep in the last two days is hard. I feel a bit overwhelmed as to what direction to take next regarding treatment, Drs. and diet.
Any suggestions would be greatly appreciated.

My heart goes out to all who's stories I have read!! This is not a fun condition. Only three weeks ago I was exercising and having fun and now am just hanging on.

Thank God for the internet, what else is there to do in the middle of the night.

:headbang:

[patricia1]

Hi Scott and :welcome: to the ICN family. I am sure you will find tons of support...most of us are females but there are some men who come here that can also help you.

I am not sure I can answer all of your questions but maybe I can help a bit. The dr question, finding a dr who knows anything about IC is like finding a needle in a haystack. I would say if the only other uro is female and she knows about IC and is able to treat you I would go see her and start using her. It took me 5 uro's before I got my diagnoses. I was told by my gyn 2 yrs before my official diagnose I had IC and to get tested. The uro I was seeing said "you are to young to have this disease and if you did there is nothing that can be done for you" it was 2 yrs later b/f I had a diagnose's. I not sure about the tums thing, although diet can play a huge part in IC flare ups and so forth. Tomotos for me is a huge NO NO. Have you tried Prelief to take before eating somethings you should not. This can be bought over the counter at most pharmacy and so forth. This would probly help more than the tums. Also did the uro put you on any antihistimines? If not maybe you could try benadryll or something (sorry for the spelling) sometimes this helps also. Alot of uros prescribe the antihistimaine Atarax or vistriall. About the pain issue, not everyone symptoms with IC are the same. Thats the bad thing about this disease and the meds cause some work on people and not others. Some have the urgency and freq and no pain and others just have pain. Me I have all three urgency, freq and pain. I am a case that is consider severe. I use the bathroom every 15 to 20 minutes up alot at night and so forth. The meds and treatments did not work for me so I ended up with the interstim, which is not working now and I am going to have to have a revision done. Sometimes the antihistimine taking at night will help you sleep.

Have you had a cystoscope with hydrodistenstion done I hope you find the answer you are looking for. Also have you looked at the patient handbook on this site. It is worth looking at. Best of luck to you.

[vm]

Hey, Scott! Welcome to the ICN. :welcome: I am sorry you had to find us, but I think you'll be glad you did. :)

The biggest thing that stuck out to me reading your post was the part about eating "lots of tomatoes". Tomato can be such a big trigger for people with IC. It was the very last of my trigger foods I was able to add back into my diet once I found a medication regimine that worked. I would really try to eliminate the tomato for awhile and see if that impacts your symptoms at all.

You could do a search on "vegetarian" here b/c I know in the past other people who eat a vegetarian diet have had a lot of questions about what to eat. You could either use the board's search function or one that searches the entire ICN:

http://www.ic-network.com/search.html

You asked about your uro and what he has done so far... In my opinion, and this is ONLY my opinion, him just telling you to take TUMS is kind of weak... :( There is so much more out there to try, and while I don't know what his future plans are for your treatment, taking TUMS would barely scratch the surface.

When you get a chance, review the Patient Handbook here: www.ic-network.com/handbook It will get you very familiar with the treatments, symptoms, the IC diet, etc. Then you can kind of bounce what your doc says off of what you have learned and then you should get a good gut feeling about what he proposes.

Good luck and please keep us updated. :)

[ScottR]

Patricia: I am going to the store and try some PreRelief.
I have not had a recent Cysto. done but have a feeling this will be next.
As for the Tomatoes, I have been buying them by the case for the last 15 years.
My first flare up seemed to be around the time that I loaded my diet up with tomatoes.
I have been a vegetarian for about 15 years and I can say that I would change my diet to eating raw meat if I could get this IC under control.

Thanks so much for responding!!

[Babs RN]

Scott,
Just wanted to add my hello to the ICN. Good luck as you begn the IC journey.

Hugs and :welcome: ,
Barb

[ICNDonna]

First of all, I'd like to welcome you to the IC Network.

I do encourage you to read the information in the Patient Handbook regarding diet and give it a try. Tomatoes are a real problem for me, but it should be possible for you to follow an IC diet and stay vegeterian if that's what you feel most comfortable doing.

Along with following the diet, you'll want to be sure you are drinking an adequate amount of water --- you need at least six to eight cups a day --- don't drown yourself, but getting enough water can help keep the urine dilute and less irritating.

I don't have a problem seeing doctors of either sex --- my uro is a male and I see the same doctor who diagnosed my IC thirty years ago.

Donna

[ScottR]

VM: Thanks for the link to find Vegetarian information.
I agree with you on the "TUMS" treatment. When I first saw that DR. I was in such bad shape that I just took the diagnosis and treatment and left thinking that maybe this isn't that complicated. He had such a nasty dispposition that I was glad to leave.
I am not a pushover but when you are sick as heck you don't have much fight in you.
At least he gave me (I think) the right diagnoses. My other DR. thought I had Prostate problems and wrote me a presciption for BETA BLOCKERS and when the Urologist heard this he went into a mini tantrum.
I have just been connected to an MD in the area by a local IC support group contact who is supposed to have a very good bedside manner and has IC herself sooo....this is my next step.

Thanks again, your support helps,
Scottr

[ScottR]

ICN Donna: I hope I can stay on a Vegi Diet. When I got the diet printout I became overwhelmed because it seemed like the whole list of foods not to eat were the ones I ate and the ones to eat were the foods I don't eat. I think I tried to do everything at once so I could correct this condition immediatly and became overwhelmed. I guess I have to take a few steps back and observe this experiment in change from a distance so I can make some sense of it.

Thanks for your concern Its nice not to be out here in IC's ville alone.

Scott

[traceann]

Hi Scott! I wanted to add my welcome to the mix also! And I agree with Kim, there are soooo many more treatment options out there then just the Tums, that can help, but not to the extent you are most likely looking for! I use the Prelief too, and I use Tums for after I have maybe eaten something that is bothering my bladder, but not as a sole means of controlling the symptoms of my IC! :)

I currently take Elmiron, Ditropan and Vistaril (hydroxyzine -- an antihistamine). I too was diagnosed on symptoms and history alone. I was put on the Ditropan originally to help with the only problem I was experiencing at the time, which was totally urethral...until a UTI kicked it all into gear. Then I recieved Elmiron, then in Dec I asked to also be put on the Visataril, after all the info I had read about it here on this site.

And since then, this combo seems to work for me, I am very happy with my improvements! I went from peeing 20-30+ times a day, and like every hour at night, to 12 times a day average, and not getting up at all now during the night, unless it's a UTI (for me that's my first big clue what's brewing). So, I would definitely agressively pursue a good treatment regimen and re-vamp my diet using what info you can find -- tomatoes for me too are a huge bladder aggrivator! I have a couple tbsp of tomato sauce on my pasta on weekends if I have had fairly a strict week, lol. Along with prelief of course, and that's it, and it usually will up my frequency for a couple hours, but to me it's worth it, lol!

Take care and again welcome, and hope to see you around the boards!!!!

hugs,
Tracey :)

[neal1044]

Hi Scott :welcome: ,

Just experiment with your diet and see what aggrevates your IC, that 's what I have been doing since I was diagnosed in October 04. Be sure to drink lots of water, it helps me a lot when I am starting to flare. The one thing that have eaten that has caused me a great deal of pain is a fudge ice cream bar. I ate it Friday evening and have been in pain since then, it isn't as bad now, but the first few days we awful. I found that a heating pad and lots of advil helped a lot. I also found that most tomato based things irritate me too, along with carbonated drinks.

Hope you feel better soon!!! :grouphug:

[vm]

I am not a pushover but when you are sick as heck you don't have much fight in you.

That is so true, isn't it? :( I promise you that the more info you gather about the disease the easier it gets to be assertive.

[Sarojini]

Hi Scott and welcome!

Are you on any other medications other than Tums?? I ask because there are many treatments for IC out there (Elmiron, Elavil, Atarax, and the like -- you can find info on them in the Treatments section of the Patient Handbook at http://www.ic-network.com/handbook ). The Tums will help alkalinize (raise the pH) of your urine and make it less irritating to the bladder, but it often is not enough for IC patients, especially in cases like yours where you're getting up so often in the night to urinate despite the Tums. Perhaps you could take some of the info you find on treatments to your doctor and ask to try them. Some of them are quite good at helping relieve nighttime urination (nocturia).

Believe me, I understand your frustration at the nocturia thing, too -- I have had episodes where I would lie down, have to pee, go, come back to bed, immediately have to pee again, go, come back to bed... and this would go on for hours until it was like 2 or 3 in the morning. The next day is always awful after that. However, I've found a treatment plan that is working for me and most nights I sleep through the night now (although I do wake up with bladder pain from holding urine so long, so it's a double edged sword, I guess -- however, I'm better able to deal with things when rested).

I think you can stay on a vegetarian diet -- you may want to start eliminating the most acidic foods from your diet, say, tomato, citrus, cranberry, etc and see what happens. That would leave you with many options. I sure hope you're not sensitive to soy like I am, because I'd imagine you eat tofu and things like that for protein.

[ScottR]

BabsRN: Thanks for the message. From what I have read on the boards "Luck" is what I'll need alot of for sure.

Thanks,
ScottR

[Dixiefireball]

:hi: Scott and :welcome: to the ICN family. Seems like these ladies has already gave you some great advice so i will just add my welcome to you for now, but please take the time to read over the hand book and try the prelief. some even say If you don't have high blood pressure if your in a flare eight oz glass of water to one tsp of baking soda sometimes eases a flare.
sending you hugs and prayers
Rhonda

[Katrina]

:hi: Scott :welcome: to ICN!
I feel for you....I have multiple diseases...many of which have a diet I am supposed to follow...I feel like there is very little I can eat. I have considered talking to a dietrician. I know others have done so and my family doc believes everybody should see one.

In looking for a uro you could try contacting a support group leader in your area.
http://www.ic-network.com/activism/supportgroups.html#AK

[theclownster]

Hi Scott! Welcome to the ICN. I am sorry you have IC - you are right it's not the funnest thing to have at all.

Even though I'm a female, my primary symptoms were actually just like yours. Pain was not a real issue (or so I thought), I just had a pretty constant low grade pain in the lower back area. The real issue for me was the frequency and urgency and especially at bedtime. It became ridiculous. I don't think I realized how much these symptoms were effecting me until I was on medication and was able to control the symptoms. I, like you, never thought pain was issue. But now that I'm on meds and my symptoms are controlled, I realized I was having pretty constant pain that really was bothersome. I just was so used to the low grade pain it became normal for me. I am most thankful for the ability to be able to sleep again (most the time through the whole night or only getting up once). I think the combination of my meds is working for me, but the one that probably helped with the sleep the most was the antihistamine Atarax (hydrozyzine).

I originally started off with a female doctor because that's who my primary care doctor referred me to. I think he made the referral to her because he thought I would be more comfortable. I did not like her bedside manner, nor was I comfortable with her staff. I stuck it out for 3-4 months and then went to a male urologist that is awesome. I wish I would have switched sooner. My symptoms are now under control and I can call my urologist anytime day or night and he or someone from his office responds quickly.

As for the nutritionist, it might be a good idea to work with one that can help you figure out your diet. What type of vegetarian are you? Do you eat any dairy? What is your major source of protein? As for tomatoes, they are triggers or most people. However, I can eat most tomatoe based sauces (marinara) with prelief without any major difficulties. I'm lucky in that regard because most people can't. The only reason I'm sharing this with you is so you know that it is possible to be able to eat some foods on the no no list. Also, we are all different, so what works for one of us might not work with the other.

I think you are on the right track with getting a new doctor. I would do what you can to find someone you are comfortable with.

Wishing you peaceful, healthier days with many less bathroom trips!

Take Care~
Jennifer

[ScottR]

TraceAnn: I am going to get real aggressive with this. Hopefully the Dr. I am going to see who is an IC specialist will be able to help me. If I can just get some sleep at night, I will be 1000% better.

Thanks again, ScottR

[ScottR]

Neal: I have been tinkering with my diet (seems like I have eliminated 80% of what I eat). Haven't found any difference in my symptoms yet but I continue to experiment.

Thanks, Scott

[ScottR]

SaroJini: I am only doing Tums at the moment but, they only seem to help during the day and the first few hours of sleep. Just picked up some PreRelief and thought I would try this. Going to an IC specialist Monday, so hopefully will get some relief.

Re: vegetartian diet; I hope I can stay Vegi but, I will adapt. I do eat alot of Soy based products which I have been replacing with dairy in the last few weeks to try and change my diet to include the good list of foods. Its turning into a kind of Atkins Vegetarian diet.
What I find interesting is my flareup started when I had one glass of wine. A week later
I had some real hot peppers which continued my flareup and all the while I had been drinking lots of Cranberry juice on the advice friends and I think this put my flare up over the top.
Regarding Rest: I'm with you, if I could just get a good night sleep I can take on anything.
Thanks again,
Scott

[ScottR]

DixieFireball: Thanks for the Baking Soda hint and the Hugs and Prayers. I do hope I come out on the other end of this soon.

Thanks again,

Scott

[ScottR]

Katrina: I may pursue a Dietician or a Licensed Naturopath. They have a lot of formal training in nutrition and chronic diseases. In AZ they are licensed just like MDs.
I wonder if food combining would help. I know a lot of people believe in this.
Vegis with proteins, okay. Vegis with starches, okay. No protein with starch. Eat fruit alone. These are just a few of the guidelines I have read. Wonder if you can create a more benign alkaline environment with food combing instead of just food eliminating ?

I did find a local group leader that recommened a local IC specialist which I will see on Monday. God I can't wait.

Looks like you have a lot of challenges yourself. I hope your suffering eases.

Yours in health,
Scott

[ScottR]

To All: I hope I didn't miss responding to any of you. All of you have been very generous sharing your compassion caring and knowledge and I appreciate it very much.
The world looks so much better when one can contact people such as you and receive so much support in times of crisis.
I have read every response and have taken each very seriously.

Thanks again,
Scott

[traceann]

You are sooooo very welcome! Believe me we have all been there, or are currently "there" in the lack of sleep department, lol. I know, the sleep thing is so very important. Not only does it help you feel peppier during the day, it makes everything a whole lot easier to deal with -- from everyday life, to IC.

Have you thought about trying over-the-counter pyridium before bedtime? The brands I am able to find inmy regular stores (Kmart, Walmart etc) are AZO Standard and Uristat. When my bladder decides it needs to feel like I have to hit the bathroom every hour or more, especially at night I will take a couple of them, and sometimes 800 mg of motrin (ok'd the dose with the doc and it's use)-(I just buy otc motrin and take 4 200 mg tabs) and it can help calm my bladder down for sleep and I generally feel better the next day. It's (the Uristat/AZO Standard) an analgesic for your bladder, numbs things up, and for me helps the frequency/urgency feelings. Not supposed to use it long term, but I know in the beginning, I used it probably more than I should have -- definitely not good I am sure, ugh. But now I just take them as needed, and thankfully now it's very few and far between the doses!!! LOL

I also take the Vistaril (the antihistamine) and that makes me relaxed enough to get decent sleep too, before I had that, I took benadryl at bedtime till I could get a RX for the Vistaril. But, like I said, it's just what I did, not saying you should do this, you should do that, lol. I am the one who asked my doc for the vistaril like I said before, after reading about it here on the boards, and I believe it's been one of the biggest factors in helping me get a decent night's sleep.

Take care and keep us posted on how your appt goes!! Hope they get you on the road to feeling better soon!!!!! (hee hee, if I hadn't been a bit aggressive, I wouldn't have gotten the Vistaril and my doc would have taken me off Elmiron after 6 moths!! ACK!)

Hugs,
Tracey :)

[Amyinagony]

Another :welcome: Scott,
You have gotten lots of great advise here already. This is the BEST support team!!! Full of wonderful, helpful people who know just what you are going through. :grouphug:
Just wanted to wish you the best in your search for an IC/MD and finding a treatment plan (including diet) to work for you. The lack of sleep is a big issue for most of us too. When you find the right treatment, it should include something to help you out in that department too. It takes a LOT of patience, and sometimes it can be a trial and error type thing before you find the right combination to help you. Don't give up, you WILL come out on the other end soon. :) Most do find a treatment that helps them.
Good luck :)

[windwalker]

Hey Scott, welcome aboard, I don't have any other tips to give you, everyone has covered it but I wanted to wish you well and wish you luck on the beginning of all of this, and I hope you get some well deserved rest. Ever try heating pad? I am to the point, I put that heating pad on my abdomen and *poof, knocked out lol. Take it easy.
Dawn

[ScottR]

Windwalker: I will try that tonight. I seem to get to sleep okay but end up waking when the urge to Urinate appears.

Thanks,
ScottR

[theclownster]

Hi Scott! I'm glad you feel supported. Good luck on your visit to the new Doc on Monday!

Take Care!
Jennifer

[vm]

Scott - You do such a good job of responding to everyone who has offered advice, suggestion, empathy, etc. Don't worry if you miss someone b/c you seem to go out of your way to acknowledge each person's attempts to help.

Not that people HAVE to do that, but a lot of people don't do it at all and you wonder if they even read the replies....