Newbie with a recurrence of IC

[modernhausfrau]

Hello everyone,
My name is Kerrie-Ann and I am 28. I was diagnosed with IC several years ago, but haven't had a problem with it since I found out I was pregnant with my son, who is now 2. Last month, I started getting horrible cramping in my lower abdomen and the pain spread into my back and groin. Going through a series of tests (and being seen by several people) has only shown a mild UTI that is now taken care of, and two kidney stones which are still in the kidney. My pain is so severe that it has disrupted my life for the last four weeks. I have finally come to the conclusion that it must be a flare-up of the IC, and now I'm not sure what to do. The last urologist I saw told me she didn't believe in IC, and that all I had was weak pelvic floor muscles. Yes, they may be weak, but I didn't like the attitude towards IC and didn't see her again. I think I saw her when I was still pregnant, so it's been a while since I saw another urologist. Used to take Elmiron, but can't remember if it was ever successful - I think you have to take it for several months before you see results, correct? Anyways, this is why I'm here.

I do have an appointment with a pain clinic because I also suffer from chronic pain, and was diagnosed with Fibromyalgia 8 years ago, but have not found anyone willing to treat it. My nurse practitioner also suggested to them that I need to be seen for chronic pelvic pain. Has anyone done the same thing? I sure am hoping to find relief from this soon - pain pills aren't helping anymore.

I am new to the site so I am sure I have plenty to read. If anyone wishes to point me into the direction of something I really should read or be aware of, please do so! I greatly appreciate any help anyone can offer.

Thank you,
Kerrie-Ann

[ICNDonna]

I have a couple of suggestions: First is to read the information in our Patient Handbook at http://www.ic-network.com/handbook --- and put yourself on an IC diet today. Sometimes that single step can offer a great deal of relief.

The second suggestion is to see a urologist for help. There are many treatment options available. You are correct in saying that elmiron can take several months to help, but many feel it's definitely worth it.

Sending healing thoughts,
Donna

[Sarojini]

Well, lots of people here are seen by pain clinics -- in fact, I have my first appointment at one on September 14.

As for Elmiron, yes, it can take 3 months up to even a year to be effective in many people, so when you try it it's best to be prepared to be in that one for the long haul!

You may want to take a look at our Patient Handbook (http://www.ic-network.com/handbook) here on the site -- it is full of information about treatment options and self-help strategies, including the IC Diet. This diet, which includes eliminating acidic foods from the diet and other things, has been a great help to many patients.

:grouphug: and :welcome: to the site!

[Dianne]

As long as you have two stones, I'd be looking at that as the cause of pain first. Kidney stone pain is severe. What is anyone doing about that?

[traceann]

Hi Kerrie-Ann and :welcome: to the boards! Yep, there is a lot of info to wade through here so, try to take it in small bites, lol. :biglaugh: It can get a bit overwhelming in one lump sum! :)

Everyone has already given you great advice, I will just add a link to right directly to the diet, as it seemed for me, I could never find it twice, lol :loco:

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

And yep, Elmiron does take at the very least 6 months to feel the benefits and could be up to 12 months for full benefits. Just depends, lol. I have been taking it since Nov of 2004, and I believe it's helping me immensely. I also take Ditropan and hydroxyzine. Things really started to improve when I added in the hydroxyzine (antihistamine). That was the last med added in, and haven't needed to change anything yet, and that was Dec of 2004.

Hope you are feeling better soon, and don't hesitate to ask any questions or vent or whatever, we are all here for you!!!

Hugs! ;)

[modernhausfrau]

Thank you so much for all of the wonderful suggestions!! I asked another site to send me a list of IC doctors they recommend, and ALL of the doctors at my pain clinic were on the list, so I'm happy they will be able to help me. I'm sure I will be put back on the Elmiron, but I'm used to taking medication and waiting for them to work properly - had to take almost a year of birth control pills to get my endometriosis pain under control, so I'm ready for the long haul! I have read a lot about the diet and have eliminated a few of the foods that were on the list. The rest of them I already avoid (soda, coffee, cranberry juice, etc.) due to acidic stomach and migraines caused by sulfites and nitrites.

No one will do anything about the kidney stones. They tell me they are small, and still up in the kidney and therefore do not pose a threat. My logic says okay, so you leave them there, only to get bigger and one day get stuck? That makes no sense to me. Don't they have medication that breaks them up or am I just dreaming? I'm not sure if I want to do lithotripsy again - I feel as if the last time I had it caused me to have chronic pain from the site, as my pain has worsened right over my kidney. Coincidence?

I will be wading through the patient guiide more today. Thank you so much for everyone's help - you all are a blessing to those of us suffering and still confused, and I wish you ALL nothing but pain-free days and peace.

Take care,
Kerrie-Ann

[traceann]

You are so very welcome!! :)

[Freedom]

Hi! I've had kidney stone troubles too. We have great results taking magnesium
and marshmallow(not marshmellow!).They are both vitamins you get at the vitamin store.I read an article about how they can dissolve kidney stones and folks that
take them (Canadian medicine article) when they return to the Dr. he can't find
them on the xrays anymore. My husband was gonna have to have kidney stone
surgery,so we decided to give it a whirl. Two weeks later when he went back in
the Dr. couldn't find them on the current xray that day and was floored! That was 3 years ago! So, give it a whirl!
t

[modernhausfrau]

Wow - great advice!! I have been wanting to try marshmallow as well as a few other supplements I have read about in other places regarding IC. Magnesium is also something I need more of. I am also having some tests done for hyperparathyroidism because I also have recurring stones. Nice to hear someone has had much success with them! Thanks!

[Freedom]

What I didn't tell you with the story of my husband is I tend to have granulated kidney stones,but when I do- the marshmallow and magnesium
I pass them!I have reoccurring kidney stones and found it is caused by the foods I eat.
I am unable to eat foods with a lot of calcium in them, including things like broccli.
When I was diagnosed in June with IC my doctor told me to do some research and develop an IC and kidney stone deterring
diet.With the help of a friend I have and can email it to you,if you would like.

[Tracey5399]

Hi,

I am replying to Kerri's email because i to am new to IC. This my first time even on here or any message board so i could any assistance on posting hints would be helpful.

My name is Tracey, 34 located in south florida
1st let me say to Kerri-ann is i know what you are going through ( just like everyone else ) I just found out that have IC, it is awful as a matter of fact when i called the ICA foundation i spoke with a lovely woman named ann-mari, I asked her "well why have i never heard of this" she stated " you never will unless you or someone you know has it" I was devasted.

I now thank god have a great support group and a good doctor and i read and read as much as i can as a lot of the time i sob and sob.

i came on here tonight i guess looking to make some new friends or aqantinces. get as much information from anyone who would like to share.

My pain is so bad most of the time and i pray every day for remission. It just seems like such a long & difficult jorney. Any insprirational or positive advice will be greatly appreciated.

My email, Traceyslilworld@aol.com

[emilyrose197377]

:welcome: to the icn.

[trytosmile]

Welcome to both of you, check out the website, wealth of information. Good guildelines for the diet, in the beginning alot of trial and error but given some time you will soon learn your ok foods vs the bad ones.

[traceann]

Hi Tracey5399 and :welcome: from another "e-y" Tracey! LOL Glad you found us! Jen (trytosmile) is so right, this website is amazing for info and the boards are just the best! So much help and advice here, it's truly wonderful!

Here's a link to the Patient Handbook where you will find info on treatments, coping, diet, etc.

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

And here is a link right to the diet that trytosmile also mentioned:

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

The diet is one of my (and many others) biggest tool to keeping the bladder happy as possible! We are all different of course, as one can eat something and not be bothered, but another won't be able to tolerate it all. Like Jen said, it's a lot of trial and error, but worth it!

What I did, as most do, is to eat just out of the "usually ok" list for a few weeks until bladder calms down. I did feel some relief in the first week, but it took another 3 or so to feel a marked difference. Then I started adding foods one a time from the "may be ok" list, and if I had no increase in symptoms, it was a keeper. This is the "find your triggers phase" of the diet. If I did have an increase in symptoms, it was put on my no-no list to be retried at a later date. If it didn't pass the second test, it was put on the permanent no-no list, which thankfully, is pretty small! It's very hard in the beginning, I won't kid ya, because it's pretty restrictive. But it doesn't stay that way forever. You just need to eat very kindly to your bladder for a few weeks or however long it takes for your bladder to calm down. Then start re-introducing the other foods, it's a big help to know exactly what things you can and can't tolerate.

A lot of us also use Prelief tablets, as they reduce the acid in foods. (found in just about any drugstore, etc) They are wonderful, and provide me a lot more freedom with the diet. They are taken right before you eat anything that is a known acid-offender, and I use it before anything I am not sure about acid-wise. They are a huge help. Also if you eat something and realize too late it's bothering you, you can drink baking soda in water, tastes yucky, but helps. (it's a tsp in a big glass of water, be careful though if you have salt-related health problems!). Tums also work in the same manner. A heating pad can also be your bladder's best friend! I love mine! It's made a huge difference to me, lol. :biglaugh: I finally graduated up to one with an auto-shut off, so if I fell asleep with it on, it will turn itself off, whew! :bonk:

Well, anyway, just wanted to say welcome and hope to see you around the boards!!! You won't find a more caring group of people.... :woohoo:

[Freedom]

I find a lot of comfort in the chat board here that occur like once a week.Unfortunately I don't know when the next one is! It's great
because you can talk one on one with someone. Anyone know when the next one is?
I don't see it on the calendar.

[Rosalie]

G'day Tracey and Kerrie-Ann, you've come to the right place for support and new friends.
You will get the best advice when you need it, a shoulder when you are down, the humour thread when you need a laugh, and the venting thread when you just need to get something off your chest. Got the whole works covered!
I LOVE THIS PLACE
Rosalie

[Tracey5399]

I want to thank those who replyed to me. It's real nice to have someone to talk to who understands.

Today is a horrible day, i tried to take some lemon stuff you drink to get rid of this awful constipation ( nothing else seems to be working ) well this crap didn't work either in fact i was up in bed all day sooooooooo sick, throwing up, bad chills and i still didn't go, I am learning what to take and what not to take the hard way i guess.

I have just never been sick like this, i didn't think drinking a little lemon constipation medicine would hurt, but oh boy did it ever. I feel very lost, i live with my boyfriend who has no idea how to handle any of this ( which neither do i ) Well he has a choice he can leave but i can't i am stuck w/this disease and to be completly frank i am disgusted with it. I can't do so many things that i am used to doing and all i do is friggin cry.

And all i want to do is feel normal again and go to work. I pray to feel good again every day.

I could really use some useful hints on the constipation, i need something that is going work fast because its been awhile since ive been able to go.

Thanks
Tracey

[traceann]

Hi again Tracey! I use Phillips Milk of Magnesia when I need it. It doesn't bother my bladder and it doesn't give me cramps. I am really sensitive to magnesium (it uh, works too well for me, LOL) so I take only 1tsp and it calls for 2-4 I think. 1 is plenty for me, lol.

Hope you feel better soon!!! Are the chills and nausea from your bladder acting up??

Hugs!

[Freedom]

Constipation? Try Kellogg's All Bran Cereal and apple pie.Apples are
a natural remedy and the sugar in the pie really helps. This is often due to
not drinking enough water so make sure you drink.. 100-120oz of water a day.
I drink a 20oz bottle with each meal, afternoon snack,evening snack to do this.
Lemon is big no,no as you discovered due to acid content.
Good luck!

[ICNDonna]

If you haven't had a BM for more than a couple of days, you might try a Fleets enema. They are available in most supermarkets and pharmacies. If that doesn't work, it may be that you need a trip to ER.

Donna

[Tracey5399]

This is only my 3rd post so bare w/me people i am learning.

I spoke to a couple of people already but i need more insight...

I received a job offer today, normally i would be estatic, jumping up and down and running to buy new clothes. This isn't the case today, i am scared out of my mind about it. I haven't worked in a little over 3 months ( due to the pain & emotional strain from the disease ) I get so bored sitting at home and than i get more depressed and cry more so i thought get a job, you need money, you need to keep busy. On the way home from the interview today i had to stop 2xs to go to the bathroom for a 15 min ride ) and every bump i hit on the road, my IC screamed at me.

I guess where i am trying to get at w/this is i know some people work and some people don't. I just feel so guilty about sitting home all day when my bf goes out and works his butt off. We came into this relationship w/both of us working and planned on it staying like that. Life has changed so much for me in the last few months, my world has been turned upside down and i don't seem to be handling it well at all. My mom said if i am not ready yet than thats it, just don't go. I want to go so badly but i am afraid my IC will act up, I am afraid i will have to quit or be in the bathroom every 15 minutes w/people looking & laughing at me. I have never been in a situation like this in my whole life and want to be able to make a decision about the job w/out letting the IC affect me ( impossible )

If anyone has any words of wisdom or has been through the same situation please get back to me.

Thanks,
Tracey

[traceann]

Hee hee, hi again Tracey! ;) I understand where it could be hard to keep a positive attitude about it, there are so many what-if's involved. It can be so scary and paralyzing.

When I was first dx'd my bf's family were meeting about 3 hours away from where I live for Thanksgiving dinner. I remember posting here, in tears that I was so scared to go, afraid to let everyone down, scared of how my bladder would do with all the travel etc. But, all the replies I got, told me not to put my life on hold for what-if. After all there was a chance I would do just fine, and to have not gone, made myself even more depressed. They advised me to plan to go, and if the day arrived and couldn't do it, oh well, then don't go. To heck with other people thought, my health was more important. So, I went.

I took my meds before leaving the house, Motrin and AZO Standards. It started out rough, cause I was soooo nervous about the whole thing. We got about a half an hour away from home, and I all of a sudden had to pee, really bad. Bf just wanted to turn around and go home, but I said no. After a potty stop, I did well all the way down! Dinner was another story, lol. The spasms started up, the frequncy, etc. I swear I must have gone to the bathroom 30 times, lol. (ok, maybe that is an exagerration, lol) and was getting kind of embarrassed at passing the same tables of people over and over again, lol. Finally we all got the heck out of there.

The ride home started out as hell, once again we thought about turning around and staying at his parent's cottage they kept there. But nope, I wanted to be home. I was thirsty and had him stop for a pee stop and to get me a bottle of water. I accidentally discovered that by holding in between my legs, my bladder was happy! I felt all the pains go away... so I half sat on it (kind of like straddled it) all the way home, and I felt right as rain! Only glitch was having to stop every so often to get a new one, as the old one got warm, lol! ;) (now I keep filled frozen water bottles in the freezer for travelling)

But I guess my point is if I didn't try, I would have missed dinner and discovering that the water bottle worked great, lmao! I was dx'd only the week before too! :) I could have gotten sooo carried away with the what-if's that I wouldn't have tried, at least I could have said I tried, had it gone even worse. AndI was totally prepared for the Christmas Day trip!!! ;)

You have to do what you feel comfortable with, what your heart and gut tell you. All I can do is tell you what I did. If you don't feel comfortable trying it yet, call them and tell them, thank you - but no thank you, maybe some later date they could consider you again, but right now health reasons are preventing you.

Or, give it a go. Sure, you'll have some bad days at work, but more likely than not, they all won't be bad as you get more settled in and settled into your meds more also. At the height of my 30+ trips to the bathroom days, some days here I was going every 15-30 minutes. It was funny once, had the cable guy here to install the internet, and he noticed and even commented to me how many times I had gone to the potty! That was a bit embarrassing, lol. Anyway, you could find a way to deal with it, you never know til you try.

But do NOT stress yourself over it, it will make your bladder feel worse!! ;) Just go with your gut, and decide if you are emotionally up to it yet!! You'll make the right decision for you, I know it!!! Eeeek! I got a bit longer winded than I intended too, send me your eye doctor bill after reading all this!! Sorry!!! ;)

hugs!

[Katrina]

:welcome:Tracey and Kerrie-Ann,
Feel free to contact me anytime. I really wish the ICA had been more hopeful...we are trying to get the word out about IC all of the time and I believe things are improving.

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!!!

http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last one is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=11535 This is nexbie kit from the oldies to the newbies

[modernhausfrau]

Wow - I feel so bad for you Tracey! It's so tough! I know how stressful it can be on relationships, too. My relationship with my husband is pretty hard right now - in fact, he left tonight after we had a huge argument and I do not know where he is. :( I went to see a dr. at a pain clinic, but so far nothing - they got me into the pelvic pain clinic, but that does start for two more weeks. I am willing to try just about anything right now.

Does anyone here have the bleeding ulcers, too? I seem to have that happening right now - lots of blood in my urine, but no one has mentioned another cystoscopy yet.

Sitting on frozen water bottles sure sounds like heaven right about now! I think I might try that! (Only us, right? ;) )

Take care everyone,
Kerrie-Ann

PS - thanks again for the warm welcome and the support - I appreciate it!

[traceann]

Yep, the water bottle really worked wonders, and it's the perfect shape against that area. Depending what I was wearing, I also would put a sock over it so it wasn't too cold, lol. And I would put it in a ziplock bag, so the condensation on the outside didn't make my pants wet on the ride, so I didn't look like I peed my pants when we reached our destination! ;) The only problem I have ever had was when my now hubby drank my ice bottle!! lmao! It had partially thawed, and he didn't realize it was my "ice pack" Now I keep extras in the freezer....just in case. And he uses some in his lunch cooler instead of ice, and cheaper than the blue ice pack things! :)

Hugs!