Maine is a large State

[Zygala87]

I hope I am posting this in the correct place. Maine IS a large State. Is there anyone in Central Maine near Waterville that would want to start a support group or contact each other? Bangor has a group but it is a long ride for me. I was my Doctors first patient he knows of with IC. Since my diagnosis he told me he has seen three other women with the same problem. That is just one Doctor. There must be many more.
I am not wise about using this site so excuse me if I have posted in the wrong place. Hugs, Ziggy

[emeraldjules]

I am looking into a position in Rockport, ME. I am seeking out anyone who has advice on support groups in the region and or IC friendly physicians and or NPs. Thank you!
Julia

[Zygala87]

Julia there is a hospital group called "Penn Bay. close to Rockport. You may want to do a search to see which Doctors are accepting new patients. You may know already that Rockport is one of the most beautiful little Seaports in the all of the USA. I doubt there is a support group any place close. The only one I found is a rather long drive to Bangor.
Welcome to the State of Maine! If you find a job in Rockport you have hit the lottery big time. Breath-taking. I wish you success and all happiness. I'd love to know how things go for you and would be happy to help you in anyway. Hugs, Ziggy

[bob04951]

Hey you two, sorry took so long to write, really just finishing reading all the posts. There is a support group in Bangor, but it is too far for hub to drive. We are lucky to have had his diagnosis fairly quickly and have an extremely understanding PCP who is generous with meds. Have also started PT in Bangor with a PT I found through other PTs and making a mess of phone calls, and she is very knowledgeable about IC. Now we just have to find a new uro as we dumped ours. Have heard about Penn Bay, will check it out and let you know. Please keep us informed on your progress with IC and treatments and keep writing. Good luck.

[bob04951]

Come on guys! Surely there are many of you out there. We need to support each other because we are so far away from any major medical centers that have docs that specialize in IC. We need to keep each other informed, and if any of you out there has any info, please post soon. There are not many of us who can afford to travel any great distance for help, so we need to help ourselves. Support groups are great, but most of us cannot get to them, so please post with any info you have on docs, what works for you, do you get flares after stacking wood, etc. etc. Snow shoveling is coming, so that could be another flare. Let's find some docs in this great state to help...:help:

[Zygala87]

I am in Waterville. Where are you? I do have a great Family PCP and a OBGYN here who has helped me the most. I did go to Lewiston and saw a Urologist but I was less then happy with him. I'm doing OK but wish I could exactly talk with those who have the same condition face to face. Hugs, Ziggy

[bob04951]

Hey Ziggy

Thanks so much for responding. We are in Monroe, which is about midway between Bangor and Belfast, in the middle of ji-bip.

My name is Jill, and my husband Bob has pretty severe IC, was diagnosed about 2 years ago after his uro removed 1/3 of his prostate. When his symptoms did not go away he simply said "I didn't think that was going to help you" HUH????? and did the PST in office and the rest is history. He told us to go home and look it up on the internet, but not to believe everything we read. He even went so far as to saying diet had nothing to do with symptoms. (Jill gives doctor a big slap...HA)

Yeah, we too have an absolutely wonderful male nurse practioner as our primary, and he had never had a male patient with IC, but he very quickly educated himself, and he is an angel. We did revisit our uro after Bob got disability and Medicare (we're only 54) and he really doesn't want anything more to do with us unless Bob has the interstim. He has proven himself to be a jerk, Bob has severe water retention problems, and more retention would kill him. So we have dismissed him and are shopping. Our NP wants Bob to see a doc Ellison down at PennBay Urology in Rockland, just to be established with a uro and take it from there.

You are right, and if a doc is a jerk, forget about it. I can't believe some of the stories on here about how docs treat people. In this day and age, and in this country, it is a disgrace. We are SO lucky we have someone who totally gets it. Glad you have found someone as well.

If you need a physical therapist, we found one in Bangor, and she is real knowledgeable, more so with women, but she was helpful and actually gave us info we had never heard. She also totally gets it, the PFD, the diet, everything, and she's real sweet. We have elected not to continue for now, because Bob just can't do much at all as far as following up at home. If you want that info, let me know.

It is good to meet you, I have seen you on here before, but did not realize you were so close by. Please keep in touch.

And shoot, how the heck are YOU doing? Let us know and also if you happen to stumble on a uro who knows what the heck he/she is doing, and we will as well. Take care!

[bob04951]

Oh and Ziggy,

Yes maybe we can get together sometime after the holidays. Would love to commiserate with you....We could certainly find a mutual mid way spot to have lunch (no pizza please! LOL)

[Kirs10]

I live in Maine right outside of Bangor. I know there is a support group in Bangor at Eastern Maine Medical Center. I have never attended but I really should.
The doctor I see for my IC is Dr. Robert Grover. He doesn't have a great bed-side manner. He is very knowledgeable about IC and the forms of treatment. He pushes the Interstim implant pretty hard, as well as DMSO instillations. I have seen Dr. Grover off and on for 7-8 years. I was very resistant to the Interstim and DMSO. I just really was scared about having something put in me for the rest of my life. The DMSO besides making me very nervous about the damage it can do, it is very expensive. I have insurance but I pay $50 co-pays for meds and I can't afford that much money every week.
I did go to another IC Specialist in Maine. Dr. Ted Roth is in Lewiston, Maine. He is not one to try any instillations, his entire practice revolves around the Interstim implant. He also doesn't have a great bedside manner. So he did my Interstim then when that didn't take the pain away and it didn't help me, he said there was nothing else he could do but refer me to a doctor in Portland, but that dr. doesn't believe in IC, so he wasn't sure what he would do for me.
I went to Boston and a specialist there to see if I was seeing getting the right treatments or if there was a technique that isn't being done in Maine yet. Dr. Church was incredible, and he assured me that they were doing all that was available to IC Specialists.
So back to Dr. Grover I went he checked my Interstim and discovered that it was twisted and not connected correctly. So he removed the old leads and re-implanted new leads and added a new battery. Now we are back to trying to get me to do the DMSO which I still will not do. He gets mad at me because I turn off my interstim because it really makes me feel like I am losing control. So I am getting ready for him to tell me again that I am refusing his standard of care so he is going to drop me as a patient again.
Dr. Grover is a very busy Dr. He is a gyno-urologist so he has the OB patients as well as female urology patients. I also does vaginal rejuvenation, and some other plastic surgery type procedures.
I know that if you call Dr. Grovers office they can tell you where and when the support meeting are being held.
I am sorry that this is so long winded reply, I hope this is at least semi-helpful. If you want to you can PM me and I will answer any questions you may have.
Kirsten

[bob04951]

Thanks Kris

Good to hear from you. Sorry you are having problems with the docs, been there...Your docs are uro/gyns and girl docs, which doesn't help my hub. Glad you went the distance, and the guy in Boston is probably right. There is just not much more out there, but at least you tried.

I refuse to deal with doctors who are rude to us. Just will not do it. My hub suffers from "resolving" depression and had a real bad paranoid/psychotic episode where everyone was coming to get him, so I have to be real careful about how docs treat him. He could be talked in to anything. Our male nurse practioner has been an angel from heaven. He is so empathetic and intelligent, and has wonderful bedside manner. We are so fortunate.

We felt we needed to get established with a new uro, and he did suggest Ellison down at Penn Bay in Rockland, but he also questions why, because there is really nothing to be done. So we will hold off for now. Bob is having some good days with Hydroxyzine and his pain management, so don't want to mess things up. We tried every drug, every treatment, instills, blah blah...So it is just status quo for now. Do stay in touch, and you are the boss of your healthcare, not the doctor. Do not allow yourself to be treated badly. Our original uro will not see us anymore unless he can cut Bob open. So goodbye to him. He was nice in the beginning, but also never mentioned interstim until Bob was on Medicare. We educated ourselves, which we all have to do. He also does not believe diet has anything to do with symptoms. Cya later doc.

Good luck to you and let us know if you find anyone new. Oh, did find an excellent PT in Bangor, so if you want her info, let me know. She was wonderful and very experienced with IC. bob04951@hotmail.com Take care. Jill, wife of Bob

[morgorm]

I have been just floating these boards and not joining for a year now because I'm not good at mixing with people. I would be willing to drive as far north as Augusta to meet sometime if you want to, but that's the limit I can drive without being in severe pain.
I have seen Dr Roth, who seems pretty stuck on the interstim....which I don't want. My primary problem is pain NOT frequency.
I am seen for pain by MRA in Lewiston and they have been very good for the most part in helping with that.
I am severely tired of the snide remarks and looks every time I get my RX filled at the pharmacy though. I am still a medical provider with a DEA number and I can't believe the whispering that goes on behind my back.
I am a Family Nurse Practitioner and I would like to see a URO MD with some other ideas than INterstim.
Does meeting in Augusta sound doable for any of you? I promise to check this site frequently... if I can help anyone or answer any questions I would be happy to do so. My best thoughts go out to each and every one of you.... may tonight be a good one.
Morgorm

morgorm@yahoo.com

http://www.flickr.com/photos/17476696@N00/535608901 (Sabattus Pics)

[bob04951]

Sorry Morm did not get back to you sooner. Augusta is kinda a far drive for Bob as well, he just can't go that far (over an hour for us) and we can never set plans because we never know when it's going to be a good day. But nice to meet you anyway!

A few PTs and docs down Portland/South Portland and Rockland who supposedly specialize in IC. You can find them on this site, sure there are more. Gotta make those phone calls, let your fingers do the walkin'. If they don't know what it is when you try to get an appt, just say thanks, but no thanks.

Our uro as well tried to force Bob into the interstim. After researching, it was just not for him (he has a lot of other health issues) so we have not been back, and he does not want to see us unless we go for it. Bye, bye! There is just not a lot out there other than meds and the diet that help a lot of people actually have remission, at least for a while. And not necessarily narcotics, although most ICers need them from time to time. If you are in pain all the time, that can sometimes do more damage otherwise to your body, increased BP, all kinds of stuff. Google chronic pain.

Hope you get some relief, maybe someday when everyone is feeling good on that particular day, we can meet up. Spring is coming one of these days, fly season would be a good time to have lunch! Take care, Jill, wife of Bob

[bob04951]

to all of you in Maine, Bob recently had a hydro done to see how bad his bladder is at this point (won't give you the gory details right now, it was BAD). The uro who did this was Lars Ellison, out of PenBay Urology in Rockland. He was real nice, good bedside manner, familiar with IC, ruled everything else out first before being invasive, and was very gentle with the hydro. We would recommend him, and you can get in quickly, usually within a week. Just make sure your records get to him before your appt. Unfortunately, he had no answers other than to stay the course and do whatever works. The hydro did help Bob a little, Bob requested to come home with a foley and an overnite bage so he could get some SLEEP, and sleep he did, for 2 days straight. Bob removed the foley himself, on the 3rd day, his urine was clear at that point. The staff at PenBay were wonderful, by the way. The whole procedure took all of 20 minutes, and we were in and out in a total of about less than 5 hours. Bob was twilighted and not intubated, but that is the anesthesiologists call. You ought to give Dr. Ellison a shot, you can always say no...

[bob04951]

Hey to all of you in Maine, whether you post or not, Kirsten hope you are still out there, would love to hear how you are doing!

Bob's hydro helped him for less than 2 weeks, and it was back to the usual. Unfortunately, he has to take water pills for lower extremity swelling, which can get quite severe, with pitting edema and swelling so bad it looks like his legs are going to split. Anyway, at least we have the "real" diagnosis, which will help when his disability review comes up in 2013.

He has been prescribed medical marijuana by a doc with Intgr8 down in Augusta. We did not make the drive, our nurse practioner recommended the group, and everything was done via phone, fax, etc. Bob cannot make that drive of over an hour. There is a dispensary in Ellsworth. This has helped him TREMENDOUSLY, he can sleep for more than an hour. Still has flares, but sometimes he feels so good he pushes himself, and TA-DA, flare city. But the point is, it helps him. Wish I could use it myself for my arthritis, but I cannot tolerate the stuff. You all oughta think about it, nothing to be scared of, the doc at Integr8 was very helpful, and the folks at the dispensary are knowledgeable with what works for what pain. And they will grow plants for you if you don't want to do it yourself. A little expensive, but they have devices that make a little go a very long way.

Integr8 has a website, you should all look into it. In final thoughts, the diet is essential for sure. We have been able to sneak in some lemon rind in some foods (like seafood) and it seems to not bother too much, and maybe a tablespoon of tomato sauce with italian type dishes. Bob always takes some tums after (he can't do the bicarb, too much sodium). We plan our "sneaks" foodwise around when he gets his pain meds refilled, just in case. Otherwise, the medical MJ has been a savior for him, but the frequency/urgency, while still there, is better some days. And the weather definitely has an effect as well. Just hoping spring will get here for good soon!!! Take care y'all and please let the rest of us eskimos know how you are! Jill, wife of Bob

[Kirs10]

Hello I am glad that Bob has found something that has been helpful for him. I have often thought about doing the medicinal marijuana.
For me I have been doing about the same. I have alot of pain all the time and there isn't much else that they can do for me. I have been taking my IC meds for almost 10 years, and I don't see much of a difference with the Elmiron or with out it. I follow the diet closely now too. I gave up soda, and don't drink caffeine.
I am now taking just oxycodone for the pain and it just don't touch it.
I will definitely take a look at the integr8's website and see if it might be something that can help me.
It's nice to hear from you.
Kirsten

[Zygala87]

Hi Jill. I always said I would never take MJ but I'm ready now for sure. I have one cig and it sits there unused. I keep thinking I might be doing something unlawful. I did not have a Doctor tell me to use it. Until I do I'm a big sissy. I'd rather take it in a brownie or something that won't burn my throat. OMG I am so happy Dear Bob found something, anything that will bring him any relief at all. He sure has been through way too much and as we spoke about before it's a family disease. You are suffering right along with him. I think of you both every day. Hug, Ziggy

[bob04951]

Come on, Mainers, we know you're out there! I think Zig, when we post, we should remind people to go to their state site. Where are you Kirsten??? How are you??? We need to stick together! And yes, the medical marijuana has helped Bob a lot, it is expensive and insurance does not cover, but we are allowed to grow a couple of plants (they take forever!) so that will be good. It does relax him and help him sleep, there are different strains for different problems i.e. pain, sleep, anxiety, etc. and they do what they are supposed to. And Bob is in a happy state when he gets to the point where he's had just enough, and can forgo a dose of oxy. Tough to relate to someone on another planet (I no can use the stuff, whacks me) but it's comical and worth it to see him have a few hours of relief. Would be nice to get to the point of no pain meds, but that's wishful thinking. Certainly nice to be legal and not have to worry about that aspect, and the procedure to get there was painless. Jill, wife of Bob

:hi: WHERE ARE YOU MAINERS???:welcome:

[Lauralee U.]

I live in old town. I developed ic in October, boy what a ride! Hi Jill, glad to hear about bobs success with mj. I am would love to hear more about it. I have pain and anxiety, but who wouldn't when you deal with ic. So happy something is working. This disease is exhausting!!! I have talked to kristen before, we have the same doc. I would love to change to a different one. The last time I saw him he was trying to sell me on his cosmetic line. He told me he could do hair removal and lighten some of my freckels. Um no thanks, I happen to like them. Crazy, I'm here for ic nothing else. Take care Mainers! Raising my water glass and toasting you all pain free days!

[bob04951]

LauraLee, that is just insane. We knew a doctor like this at one time (emphasize at one time) back in Jersey, quack, quack. We were very impressed with Dr. Ellison down at PenBay, he has been real good to us, understands the travel issues, and confers by phone, but you of course need to see him. He'll probably want to do the cysto/hydro/biopsy to rule everything else out, but he was very gentle, Bob had no problems after. He does not over extend the bladder, and make sure you talk with him about it. He will talk with you about the interstim, but he does not do them, think he just has no answers for ICers, and that is a last resort. No thanks. Did ask him if it would help the pain, he said absolutely not, so he was honest, think he was just trying to help with the frequency issue as we have tried everything on the market. Can deal with the frequency if the pain would just go away. Yes, the medical MJ does help Bob, it is expensive though, but we are allowed to grow a few plants (the waiting is the hardest part). I don't touch it myself, but it is interesting to see Bob on one level where everything's funny and I don't get it. LOL. Your girls are adorable, wish you could feel better and be able to get out in this beautiful state and do things with them. Yes, it is a journey, you are just starting it, but would certainly advise you to FIND ANOTHER DOCTOR. If you do go to PenBay, ask for Dr. Ellison, you can get in within a week. You can find info about him online. Good luck to you, if you do see him, tell him we sent you. There is power in numbers, we need to stick together and get this nasty disease outfront and center!!! He would be an advocate. Stay in touch please! Jill, wife of Bob

[bob04951]

Kirsten, really good to hear from you. Goodness, you are on a lot of meds! Is the Elmiron working for you at all, have you tried going without? Your oxycodone dose is still in baby stage, but sure doc wants to keep you low as you can tolerate. Bob is up to 90mg every 4-6 hours, plus fentanyl patch 100mcg every two days, so he is pretty much maxxed out. Methadone has been discussed, but we want to stay clear, too scary, way too scary. Too many people already know Bob is taking narcotics, we lock our doors now. The medical MJ helps him a lot, but we can't afford it, not covered, trying to grow a few which is allowed, and more for him because I don't touch it. Did you ever look at, Integr8? Heard there is another in Brewer area, but don't know much about it, these folks are smart not to plaster it all over the web. Know the pain meds don't help much, the patch and oxy combo seem to help Bob somewhat, but as you know, when that bladder fills, nothing is going to touch it. He is able to function inbetween with it, but is sleepy all the time. Hope you are maybe having a good day today, are you finding with all of the thunderstorms/low pressure areas scooting through that you feel more pain? Just curious, Bob can predict with pain. Take care, Jill wife of Bob

[dixiecupdog]

Hello Maine!
Hope your still here! Can't believe we're it
For the whole state! I live downeast
Small town... My doctor treats several other
Women for IC but does not believe in giving out
Pain meds..I do live most of my life with no flares
But oh boy when it's bad it's WICKED AWFUL
I am almost bed ridden ... Wish I could find a pain med manager
And wish we had a support group!
Hope to hear from you & hope your day is pain free

[bob04951]

I emailed you, but don't know if it went through. We are in Maine and close to downeast. Email me back at bob04951@hotmail.com so we can be in touch. We have much info for you. Jill, wife of Bob Hope you have a good day too, but this weather doesn't help much!