Tenative Cysto/Hydro Dec 14th

[kjones1]

I have scheduled a tentative cysto/hydro with a highly recommended doctor but I am still nervous about the procedure. I have been diagnosed with mild IC (if that) on symptoms so the procedure may help diagnostically but of course i am hoping more for the therapeutic benefit. Praying that this procedure will knock this IC thing into remission for a long time. :pray:

The thing is I am starting to feel better with the diet and the medication and am scared that the procedure could make my situation worse rather than better? Its so hard to make these decisions. :hmm:

I at first was all about the procedure. I am getting married in June and was hoping that the procedure would help me heal and be less depressed and more focused on marrying the man of dreams. I just don't want to rush into a procedure thinking its a quick fix though either.

Any advice? On the procedure? Whether someone with mild IC should have it done? Can it make it worse? Whats the best result (any success stories)?

Thanks everyone. Kelly :bow: I owe you!

[emilyrose197377]

Good luck with your cysto and hydro you will be in my prayers.

[Briza]

I think I have read that hydro helps symptoms in 50% of patients? Recovery time seems to vary,however,...from a day or two up to two months. There's no way to tell how long your recovery time will be or if your symptoms will be relieved by this procedure. I am one who cysto and hydro did not help and also had complications that put me into the hospital for a week. I was at the end of a 4 month bad flare and my symptoms were mild at the time of the procedure. If I could turn back time, I would have given my medications more time to work before deciding to have the hydro, but I was looking for the quick fix. It was this week one year ago that I had the procedure and have regretted it ever since. I have been managing well since then with diet, elavil, and pyridium, and I would say that I have mild IC. Symptoms come and go, but are not debilitating. I missed over a month of work last year due to that surgery, the complications, and the recovery time. With my medication plan now working, I have not missed any days of work so far this year due to IC.
I know that this is a difficult decision that only you and your doctor can make. I know that many others have had a completely different experience with this procedure than I had but it is important to know that complications, though rare, can and do happen.
There are others here who have declined the hydro and cysto and their doctors have worked with them on a medication plan.
Best of luck to you. Whatever decision you make, I wish the best for you! :)

[Dianne]

What happened that put you in the hospital and affected you for a year?

[blendno14]

Hi Dianne,

(almost) every word that wcq said is valid for me as well. I had mild IC, had the hydro, needed 3 month to heal (without any complications from UTI though). Frequency went up, bladder volume down, pain up. Note: nothing went wrong, I just turned out to be a "slow healer" and my bladder didn't like the procedure.
Now I am where I started. I had no option, in germany you have to have the hydro for diagnosis.
I know we are all different, some have very good results from hydro, but if I could turn back, I wouldn't do it again. No way.

If your medication is already working, why risk anything?

Good luck with your decision :)

[Dianne]

Thanks for the info. The only option left for me is spinal cord stimulator (for pain, not Interstim) or bladder removal. I've tried everything there is out there. So if I do another hydro (my 3rd), it's kind of a last ditch for pain control. I didn't have any trouble with the other two but I like to stay informed.

[kjones1]

Has anyone with Mild IC went for a cysto/hydro and got better rather than worse? Im getting a little scared that I might be making the wrong decision about getting the cysto and hydro for the diagnosis and pain. Please let me know if you have had mild IC and had recovery after the hydro--Kelly

[Oxana]

It are some people here on the boards who were diagnosed by symptoms and after only regular office cysto(all doctors do it make sure if it is not more serious things).

I'm one who was diagnosed without cysto/hydro. I'm on medication only for 2,5 months and want let them time to work. Believe me, I was in the same position as you are now.

In your place, I couldn't do cysto/hydro right now. I could wait more, especially if I already started have some improvement of the symptoms being on medication.

But it is your decision and only you can make it.
I wish you feel better soon!

[sweetangel2080]

kjones1,
I have been helped by the hydro and I think I only have mild IC although there was significant bleeding found during the hydro - the hydro helped reduce the number of frequency flares I get and increased my bladder capacity. I had a UTI from it and felt rough for about 2 weeks but otherwise it was fine. I am going to ask to have another one when my symptoms go out of control again.

[Briza]

Diane
There's a thread in this forum titled Severe Pain after Hydro...that I started after my hydro last year, if you want to read about my experience in detail.

Long story short, after being released from the day surgery I was urinating, but not much, and had a lot of pain. The retention became so bad that my belly swelled huge and I experienced abdominal pain like nothing I've ever felt which is why I was hospitalized two days after surgery. Anesthesia from the surgery as well as the urinary retention led to paralyzed bowels, which contributed to the pain. A friend who visited me in the hospital likened the pain to being in labor for a week. My stomach was pumped through an NG tube (inserted through nose) to get my bowels working again. I didn't sleep or eat for over a week. It was a very traumatizing and painful experience that I wouldn't wish on my worst enemy.

I became very depressed. I imagine anyone would. And because I'm a middle school teacher, I lost so much time that I needed to give to my students, and my classes got totally out of control while I was out and I had a really hard time regaining control when I went back to work. So I have felt a lot of guilt for not being there for them, teaching them what they needed to succeed the next year.

I had to go back to work sooner than I should have, because my paycheck was already being docked since I had used up all my sick days even before the surgery for other IC related doctor appointments, pain, etc. Even though I have insurance and had already met my deductible, this procedure and the unexpected hospital stay cost me thousands of dollars and a couple thousand more in lost income, which has been a major financial burden over the past year. I finally paid it off last month, but it took a lot of sacrificing.

So that's why I wish that I had listened to my family when they encouraged me to wait longer to see if the meds would help, especially since I was beginning to feel better at the time of the hydro. Having the procedure was a major setback for me because it affected my physically, financially, and emotionally.

Possibly there are things that could have prevented or shortened the hospital stay: being released from surgery with catheter and foley, x-rays or CT scan as soon as pain got so bad, NG tube and appropriate size (pediatric) catheter inserted sooner than they were.

I am doing very well these days on my medications. :) But another hydro is not in my future.

[kjones1]

does anyone know (either from reading it somewhere or personal experience) what the cysto/hydro usually helps in terms of symptoms. My capacity and frequency is pretty good its more of the burning and pain. I just spoke with my nurse about the surgery. Getting Ready :woohoo: Im actually really nervous but pretending to be stong. :)

I asked all the right questions (thanks Donna) about pain meds and antibiotics. Im afraid of antibiotics. I my two big flares were on Augmentim (thats actually when all this IC business started) and Cipro. They said something about Macrobid? Does anyone know anything whether thats bladder friendly?

Thank you -Kelly

[DebbieD]

Macobid Is only the Antibotic that will Treat UTI's Only.This Medicne helpd the Urinary tract only.It does work.

Any questions I will try to help Okay.

Hugs :grouphug:
DebbieD

[kjones1]

Debbie,

Have you used this antibiotic before either in small doses for long periods of time or for a UTI? Have you had a cysto?

Any theories on bacteria and IC? I almost feel like going on antibiotics caused my IC but I know that sounds ridiculous.

Any recommendations about the cysto and taking the antibiotic would be greatly appreciated--Kelly :hi:

[kjones1]

Well tomorrow is the day. I just finished my semester (last class and exam today) and now I move on to focusing purely on recovery. I am having my procedure tomorrow at 8:15. Prayers would be greatly appreciated. Im nervous about the pain and about the diagnosis (keep hoping its a cyst or something else rather than IC-DENIAL). I am studying clincial psychologist so Im going to have to work on that. I feel okay but more worried that I am putting too much hope into the cysto/hydro. I want a cure or at least massive symptom relief for my upcoming wedding in June. I have learned so much and helped myself as a result of the great advice of all you out there. I think I am going to try and let go and let whatever happens happens. I have a good doctor, the best mom who is traveling to take care of me, and a little bit of faith left. Cysto work your magic! Im going to try and keep positive and hope that Im falling in the 50% that gets relief.

As Im having my cysto (or more likely after my cysto while heavily medicated) I will pray and wish the same relief on all of you out there.

Less pain for everyone!

I'll keep you posted--Kelly

[Imustpee]

I had this done in August. I was just fine, just sore for a few days. Make sure to ask for photos of your bladder...this is what helped me in my fight to get my bladder removal surgery..a picture does say 1000 words...I have been taking Macrobid for over a month now with no troubles at all.....this is to keep me from having an infection as I am having my bladder removed next week...good luck and try not to worry...I am sure you will be just fine... :)

[kjones1]

Thanks ImustPee. I wish you lots of luck too with your bladder removal. It helps so much to hear from the people who have gone through things already. I hope you get lots of healing over the holidays....

[mela414]

Imustpee,
good luck with your upcoming surgery. You've been through so much and I'll be praying that you have a speedy recovery. Hang in there. better days are coming.
I've asked my uro for my photos at both post-op appts and both times he said he didn't have them in the chart. He said they were at the hospital...... I sure wish i could see the photos. I think visualing my bladder would help me to get a handle on things.

[Imustpee]

Mela...you are intitled to your medical records..go to the hospital and ask for copies.....I have all my medical records..I am glad I asked for them...you wouldn't believe all the mistakes esp from ***** ....Never let someone you love go there...they said I was instilling Elmiron, hydroxizine and aloe vera gel.....then the second dr that reminded me that she was the one that went to medical school and I didn't know what I was talking about....oh the stories I could tell......get your records!!!

[kjones1]

Hi Everyone,

I am just resting up and doing a little around the house since my cysto/hydro last Wed. The procedure went pretty well. I had a great doctor and although I obviously was in pain after the procedure it wasn't as bad as I thought it would be. I was on pain meds for the first couple of days and my mom and fiancé took great care of me. There were so many meds to take and some had to be taken with food, without food, 2 hours after this one, an hour apart from this one, and so on :dizzy: My mom helped me with that because I obviously was too drugged to deal with it.

My doctor diagnosed me with very mild IC ( I'm glad he said very mild) and that I would be okay as long as I stick to the diet, take the meds, and make sure to do my kegels. I have been avoiding those so my fiancé is now coaching me through them. My doc says I'm spasming because I'm scared which he said was normal. He wasn't condescending but explained that my anxiety is making it worse cause I'm expecting to feel pain. My brain is wired to tell my nerves in that area that I have pain so now I need to undo that programming by practicing kegels. It makes sense to me. He also gave me a picture of my bladder which I might frame to add some humor to the whole thing. :lmao: Overall I'm happy that I did the procedure and a bit more positive about getting better.

My doc wants me to keep on the strict diet (it’s worse than the IC diet posted on the website (no nuts, no potatoes and lots of other random stuff) for another two months until I see him at my follow up. He also doesn't want me using Prelief yet but said I could do it over the holidays and cheat a bit. He says I should feel a lot better (from the procedure, diet, and meds) the next time I see him in Feb. A month before when I saw him he said I would be feeling a lot better the next time I saw him at the surgery (just from the meds and diet) and he was right- so I’m going to believe him. He's cute. He's this little old Irish man with a white beard that has nine kids. He is reassuring-confident but not cocky-kind but honest. He makes me feel safe and gives me hope. Now that I think about it he kind of reminds me of Santa. Maybe he will give me the best present Santa could ever give me- real relief from IC. :pray:

[Janie Miranda]

Glad to hear you have "mild" IC. I hope you do really well on the meds and the diet!
When you have time and feel better do you think you could post the diet he gave you? The reason I ask is because I flare from potatoes and i would like to see what else he has on his list that is different from the ICN diet. Thanks bunches.

[mela414]

Oh what a great post! I can picture him and his beard! I really do hope that this Santa will being you all you want for christmas!
I'm glad that you are maintaining a positive attitude. It's half the battle!
Hang in there!

[Kimberly32]

Hi everyone,

Just wanted to share my opinion a little with you all. I have had great success with the hydrodistentions I have one every 3 to 4 months and next week will have my 3rd. Over time you can start to space them out a little farther apart depending on how you do. I can tell you that since my bladder has been better I got stuck in a flare 2 weeks ago and thought I would just die!!! And I know it was because I haven't had to deal with the pain nearly as much so when I do get it now I dont know how to handle it.
I think it is important to trust your dr and whatever he/she says might work if you dont agree then it is important to move on until you find the right Dr. for you. I don't like to hear all of you ladies with the bad experiences we all have had them weather it be meds, instillations, etc. It is truly frustrating I totally understand but I just wanted to share that hydro's do work for me and helps keep my bladder under better control so it doesnt run my life as much.
Thanks for letting me share
May God Bless All Of You
Kimberly

[SusieQ045]

well thank you for the informaiton, i am new to all these treatment options and it is nice to hear when people have good experiences. i think that is something that i am going to talk to my doctor about. the only thing that ive done for pain etc...is apin medication and IC oral meds. im just worried that if i was to get it done i would be in alot of pain afterwards. what are the sideffects if any? how long do they last? and i have another question- like i said i am new to this what exactly do they do? do they put something in you? sorry i ask so many questions but i am in so much pain all of time, its getting where my pain meds arent even working. thanks

[kjones1]

Janie, I am home in NY for the holidays and dont have access to a scanner. Once I return to Mass I'll scan the diet he gave me. It seems to be helping. I cheated a bit today and yesterday with the holiday (using prelief- do you use it). but overal the diet seems to be helping. He wants me to do it super strict for the next two months and then start reintroducing things and using prelief. Im still hoping the hydro will help me. Seems to be helping a bit but too early to really know. Have you had any done? What meds are you taking? hope you are feeling well. --Kelly



Glad to hear you have "mild" IC. I hope you do really well on the meds and the diet!
When you have time and feel better do you think you could post the diet he gave you? The reason I ask is because I flare from potatoes and i would like to see what else he has on his list that is different from the ICN diet. Thanks bunches.

[Ward14]

kjones1

I just wanted to tell you my experience with the cyst/hydro since I noticed that you metioned something about burning and pain. I just had the cystoscopy/hydro 12/20/05 and I haven't felt any Pain with Intercourse or buring afterwards since I had it done. :woohoo: I feel so relieved b/c I have been having those symptoms for a year now with no diagnoses and finally have found the reason why. I guess I was in that precentage of people who benefit from the surgery. That was my first time ever having it done and the reason I did was so that we could find out if I had IC. I just started taking Elmiron (100mg 3x's a day) and Elavil (1x's a day 20mg). So I'm keeping my fingers crossed that my pain and burning doesn't come back anytime soon. Good luck to you and hope you are doing well.

Tiff

[Dianne]

Oh I'm so happy for you! And jealous! LOL I had my 3rd hydro on 12/19 and haven't had any results so far.

[hoping4acure]

Kelly,

I am happy to hear you are doing well :woohoo: as I told you in my PM, they really helped me...I hope they do the same for you.


Take care...and stick to that diet ;)


:grouphug:


Louann

[kjones1]

Thanks Everyone. I am feeling better (its just such a slow process). I have returned to my status before the surgery with some burning and pain but the cysto itself wasn't as bad as I thought it was going to be. I just hope now I start to see some real relief. I heard from most people that they see real symptom reduction 2-3 weeks following the surgery? Was that true for all of you? Especially Ward14? How did your symptoms go away, gradually, all at once. I can't wait to have sex again . :). Im doing my kegels and getting ready.

Im trying to stay positive and stick to the diet (thanks Louann for the words of encouragement). I cheated a bit at Xmas but the doc said it was okay with some prelief which I havent been using on a day to day basis. Its a rainy day today. I have been doing a lot of reading. Trying to keep my mind of my IC (not so easy huh). I think I am too preoccupied with it. I need to just let myself heal and let the hydro help out on its own. Id love to hear from you guys about the timeline following the surgery. How did relief start? I have had more relief but i am impatient (Bad Kelly!). It would be great to get some more hope from all of you. Thank you all for the kind words. I don't know what I would do without this board. Hugs--Kelly

[hoping4acure]

Hey Kelly,

Yeah...It averaged 2 weeks for me until I started to feel "normal" again. I think you are doing the right thing and letting yourself "heal" It's so important not to jump right back into your daily routine. I believe that is what healed me more quickly...I allowed myself that time to heal.

I'm so happy that you are doing better and that it wasn't as bad as you thought it would be.

Sending warm hugs and healing thoughts your way ;)


Louann

[Ward14]

I'm not sure what kind of pain and burning you have, but mine was Pain with Intercourse and Burning right afterwards. So when I had the cystoscopy/hydro on 12-20-05 and got some relief from those symptoms. I started having sex about 4 or 5 days after my surgery and its been okay since. I'm just praying that it stayes this way for awhile since I have not had any relief in a year now.

Tiff

Thanks Everyone. I am feeling better (its just such a slow process). I have returned to my status before the surgery with some burning and pain but the cysto itself wasn't as bad as I thought it was going to be. I just hope now I start to see some real relief. I heard from most people that they see real symptom reduction 2-3 weeks following the surgery? Was that true for all of you? Especially Ward14? How did your symptoms go away, gradually, all at once. I can't wait to have sex again . :). Im doing my kegels and getting ready.

Im trying to stay positive and stick to the diet (thanks Louann for the words of encouragement). I cheated a bit at Xmas but the doc said it was okay with some prelief which I havent been using on a day to day basis. Its a rainy day today. I have been doing a lot of reading. Trying to keep my mind of my IC (not so easy huh). I think I am too preoccupied with it. I need to just let myself heal and let the hydro help out on its own. Id love to hear from you guys about the timeline following the surgery. How did relief start? I have had more relief but i am impatient (Bad Kelly!). It would be great to get some more hope from all of you. Thank you all for the kind words. I don't know what I would do without this board. Hugs--Kelly

[kjones1]

Tiff, I hope you are still feeling well. I am having similar symtoms but havent tried intercourse yet. Still in the initial phase of this whole thing. The last couple of days have been better though. Hopefully the Hydro is starting to help. I am also doing exercises and am hoping they will help with the burning and pressure. Im getting married in June and would love to be having sex pain free before then. Heres to wishing.:pray: What were your symptoms and treatment for the last year (before the cysto/hydro)? Just curious. Is this your first hydro?

Good luck to you! Wishing you lots of great sex and a happy holiday! :)

[Ward14]

Hi kjones1,

How are you doing? Yes I'm feeling much better, except I felt a little burning yesterday after me and my husband had intercourse. But I'm still going to continue to take my medicines b/c I think the Elavil helps with the burning and I know the Elmiron takes awhile sometimes to show any improvements. I actually started having Pain with Intercourse 11/04 and I believe the burning came on sometime after the pain started. I have been through alot in the past year with trying to find a diagnoses for my pain. I started out on Antibiotics for maybe a yeast infection or bacterial infection. Then I also got off the Depo thinking maybe when I got the shot it could have done something. I had an ultra sound, transvaginal ultra sound and a MRI done and they couldn't find anything. I had a sample of my uterus taken to see if there was anything like bateria or whatever could be there (there's actually a name for this procedure, but I forgot what they call it), and still couldn't find anything. Then after all that, they decided to do a Laparoscopy to look for Endometriosis. So when I had that done, they still didn't see anything except they said it may be possible that I have adenomyosis but wasn't even sure that I had it and if it would be causing my pain. Then, me and my husband decided for me to go and see a specialist who specializes in Pelvic Pain and that was the biggest mistake I made b/c he didn't tell me anything that I didn't already know and I had to pay the cost out of my pocket b/c they didn't except my insurance. After all of that, the only thing I was left with was to have the cystoscopy done and hope that IC was my problem or do the Lupron treatment for Endometrosis since it wasn't 100% sure that I didn't have Endo. So I decided to do the cystoscopy on 12/20/05 and I believe that IC is the cause of my pain from what my results were from my surgery and I feel some relief for once.

You are probably wondering why it took so long for the doctors to find what my problem was, but I also went through some trouble having my first and second surgery. The first surgery (Laparoscopy 5/31/05), I ended up having to see a blood doctor (hematologist) b/c when they did the lab test for my surgery, they thought my blood was thin. Then for the second (cystoscopy 12/20/05), I got sick in November with a cold and had to reschedule it for December.

Yes, this was my first cyst/hydro.

So anyhow, thats my story for the past year. I hope you are feeling better. :)

Tiff

[kjones1]

Hi Tiff,

Im sorry the last year has been so awful for you. I have been having symptoms since this past August. It did seem to take them a long time to figure out that you had IC. Do you only have burning and pain after intercourse or do you have them or other symptoms during the day? I had a couple of good days last week and then a couple of awful days that were brought on mainly by stress I think. Im starting to get nervous that the hydro isnt going to help me but I heard sometimes it takes up to eight weeks to see an improvement?

Have people heard of that? Hope so. I really would like to get some long term benefit with my wedding coming up. Everyone keeps telling me its mild IC and is controllable. Its so hard to be patient. I need to keep myself busy. I bought lots of books and my fiance and I are trying to start a bookclub together. Its been hard not being able to feel close with sex. We are trying to figure out other ways.

How long have you been taking elavil and elmiron? Im wondering if I should try elmiron after my wedding. Keep feeling good--Kelly

[jujuz100]

i AM NOT YET DIAGNOSED AND WONDERED CAN I.C CAUSE PAIN IN LOWER PACK NEAR BUTTOCKS AND SHOOTING PAINS DOWN THE LEGS? IV HAD A MISERABLE TIME OVER XMAS, MISCARRIAGE AND U.T.I, NOW SUSPECTED I.C. THANKS, JUJUZ XX

[kjones1]

I had some shooting pains in my thighs and buttocks but not really down my legs. They luckily have gone away since taking and switching my meds. Are you on meds now? So sorry to hear about your baby and now all these health problems. Life can be so cruel. I am going to pray for you that you don't have IC. Thinking of you--Kelly

[jujuz100]

Thanks very much kelly, im on detrusitol at the moment which seems to be helping a bit, but i dont want to take it too long as we want to try again for another baby-im 33 and married five months and dont want to hang about. thanks for your prayers xx p.s does i.c ever go away or do you always have it?

[kjones1]

Jujuz- What is detrustil? Im a bit of a newbie to the IC thing. Just got diagnosed in Dec although I was having symptoms since August. It could be IC that is giving you those pains but it could also be the medicine your taking or the other health issues. You would def have to talk to a doctor about that. Do you have a good gyno or urologist that is knowledgable about IC? You will probably have to do tests in the future but hopefully your symptoms will go away. You will probably need time to heal emotionally and physically. Stay away from stress (I know that that is almost impossible but if you can, do try). IC is a chronic condition but lots of people live normal lives with medication and diet (you might want to look at the website to keep away from certain foods). And better yet lots of people go into remission for periods of times (sometimes 20 years.) Also I wouldnt jump the gun. You may not even have it. You have been through a lot which might be a more likely cause of your pain. I wish you luck and let me know if I can help direct you to good info. Congrats on the wedding (5 months ago, huh). Im getting married in June (Im 25). I am struggling to get my IC under control before the wedding. Diet and medication has helped a lot but the stress from planning the wedding-not helping so much. :)--Good wishes--Kelly

[jujuz100]

Dear kelly, iv seen a gyne doctor who could find nothing wrong, and have been waiting to see a urologist, but the general opinion seems to be this i.c, and looking at different websites i seem to have all the symptoms. To be honest im terrified and wonder why me-but im sure thats everyones reaction. In the past iv struggled with ibs, and interestingly i see a lot of i.c sufferers do also, so there must be a link. Detrusitol seems to be a drug to stop bladder spasms, and although it seems to be working-its hard to know when you need to pee! and i still have intermittant pains and pressure sensations and around hips and buttocks, and burning sensation in vagina. Congratulations on your wedding, i hope its not too stressful and you have got a wonderful and supportive husband -to-be- god knows they need to be!!!!! :bunny: your replys have really helped me, thank you very, very, much xxxx jujuz

[Ruchily]

Hi Kelly!

How did the procedure go for you? I am scheduled to have this done Jan 26th...but I'm getting nervous already.

Would love to hear how you're doing!

A newbie,

Ruchily

[hoping4acure]

Ruchily: Being nervous is normal. I had 5 hydro's done. I know ICNDONNA has had many...some call her the "hydo queen" ;)

Anyway...I hope they help you as much as they helped me. Good luck and keep the faith :)

[Ruchily]

The more I learn the more I find hydro is an option...not a defenite. I'm now trying to make the decision whther or not to have it.

I have been diagnosed by this uro with PFD, Vulvodynia, an autoimmune disease, and we highly suspect IC. I have SEVERE pain to the point sitting down and sleeping can be disturbed from these conditions.

But I haven't really tried the diet yet...

Would you give the diet (or meds...haven't done that either!) a try before doing this surgical procedure? Any thoughts?

Thanks again :kissing: :angel:

[hoping4acure]

I would try the IC diet (listed below or at the top of the page) FIRST before doing the surgical procedure...some can keep the IC under control on the IC diet alone.

When your URO dx's you he/she will tell you what your options are as far as treatments.

Good luck :)

[kjones1]

I agree with need2heal. Def start with the diet and the meds. The foods you eat can help heal your bladder or make your pain worse. I used the diet and some meds for about a month and my pain went from around an 8 to more like a 3. Its not no pain but it made a big difference. By the time of the surgery I was already getting better. My hydro went really well (confirmed my very mild IC). I had a really good doctor that gave me good advice, pain meds, and information following the procedure. I think that is super important to have a good doctor you trust and can "bother" with questions. I healed from the surgery part of it within a week I'd say. Just stayed low and relaxed which is something I dont do often (Im getting my Ph.D in clinical psych and am planning my wedding). I have had some symptom reduction and I think I am more positive about beating the IC now that its confirmed and I have a picture of what Im dealing with. It made it more real for me. Over the holidays I had lots of stress so unfortunately I think it held me back a bit but Im hoping and waiting to see more symptom reduction. Its different for everyone and I heard it can take anywhere between 2-8 weeks to see a real difference.

Im no expert and a bit of a newbie myself but I think the diet and meds are the place to start and then you can move onto the hydro when your doc feels you got all the benefit you can from the diet and meds. Good luck. Keep us posted. --KJ :)

[kjones1]

Janie,

I am sorry I haven't got that diet to you yet. I was trying to scan it and my scanner at home is not good enough. My fiance is going to bring it to work with him Monday and try and scan it from there. You can email me directly at kj1o1o@gmail.com if you want. I swear once I get it in the computer- Ill email it to you. How are you feeling? Still feeling good and banging on remission's door? I hope so.

Im feeling better but Im a bit pressured with my wedding coming up and it makes it hard. Im putting a lot of pressure on myself to get better (which I know is not good). Im getting impatient with my hydro. It seemed like it was really helping and then I flared so now Im not sure if Im not getting benefit or if its just waiting the flare out? What you think?-- :) KJ



Glad to hear you have "mild" IC. I hope you do really well on the meds and the diet!
When you have time and feel better do you think you could post the diet he gave you? The reason I ask is because I flare from potatoes and i would like to see what else he has on his list that is different from the ICN diet. Thanks bunches.

[jujuz100]

can someone tell me where to find the i.c diet?

[kjones1]

JuJuz Here is the link (below) to the patient handbook. There is some really helpful stuff there including the IC diet guidelines that you can find under the diet section.

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

Good luck and I hope you are feeling better--Kelly

[mela414]

If you go to the top of this page you will find the IC Handbook. there's a lot of info there.
Ruchilly,
I would try the diet and some meds (with the help of your dr) first. See if that helps. If you have IC it will definately help. As for the hydro a lot of girls here DO get relief from it but then.....there are others like me who did not. I still have pain and find that if I watch not only my diet.....but also any supplements that I take, the pain will subside.

[kjones1]

Hi Everyone,

I just wanted to update you guys on how Im doing. Ive had a couple of good days this week and I think that the Hydro might finally be starting to reduce my symptoms.

Its hard to say because I am still sticking to the extra strict diet and doing the calcium citrate/evian combo (although I have only been using cal cit in 1/2 dosages and for a day or so). My stress level has def gone down too but I have a feeling its more than that.

I had the cysto/hydro on Dec 14th and its almost four weeks later. I def felt some initial improvement after the surgery but then would have a flare or setback either because of the food over the holidays or stress but then I would have good days again. Slowly two steps forward two steps back it seems that its helping (hope Im not jinxing myself). Imustpee I also got a pic of my bladder. Thanks for the advice. Your right it really is motivational to have a picture to look at and see what Im up against.

So I wanted to thank everyone for the kind words and encouragement to do this procedure. I am glad that I went through with it and am getting at least some relief from it.

i know its so hard to treat IC mainly because it sucks so much you treatment success is so variable. I want to try everything at once to reduce symptoms but realize that its a process. Its hard to be patientand do one thing in order to see whats really helping but that seems to be the best approach to this. In the past I always would be able to push through life and fixing whatever was an obstacle. I am learning to ask for help and accept that I dont have to (or want to) do everything for everyone. Thanks for the support!

Imustpee I hope your bladder surgery went well. Feel Good

jujuz100 hows the diet working out for you?

Ruchily when are you scheduled for the procedure?

Hope everyone is well.--Kelly

[Ruchily]

That's great KJones1!!! :kissing:

I am scheduled for the 26th of this month...about 2.5 weeks away. I'm VERY nervous about the whole thing...so it helps to hear you are ok!!!

Do you have any tips/advice for me? What's this about geting a pic to see how your bladder looks?

It's good to hear a positive story about the procedure...I've read so many negative ones!

Thanks again and I'm glad you're doing well :grouphug:

Love,

Ruchily

[kjones1]

Im keeping my fingers crossed that I keep going in the right direction. I think it is really important to have faith in your doctor and talk with him or a nurse about what the procedure is and what to expect. Also talk to fellow ICers. For example when I peed in the recovery room I peed blood. Now I remebered someone had said that that was normal. Knowing that -I didnt freak out. I only peed blood once some people pee blood for a day or so.

I made a list of questions to ask him after the procedure (which my mom asked since I was in recovery). I could send them to you if you give me an email address. You should def ask for pain meds for a couple days after the procedure and an antibiotic. I also took a probiotic with it so I could keep the yeast away.

Having my mom and fiance take care of me while I took a couple of days off to lay in bed, read, and watch DVDs was key. Def try to get a couple of days to recover and a person to hang with you. Relax, relax, relax.

What kind of symptoms are you having? I was diagnosed with very mild IC. My doc went in and after the expand the bladder they take pictures. Based on the color, tearing, inflammation, etc they can tell what type of IC you have. Sometimes they can do this just on symptoms. Its not perfect science but what really is.

Imustpee suggested I ask for a picture. I asked my fiance and mom to ask for it and they were like "no way". They were embarressed. Luckily my doctor was so good that he gave them it before they had to ask :). Now I have a picture and an idea what it looks like there. It kind of made it more tangible for me. All bladders have some damage so dont get too grossed out when you see the picture.

Good luck and let me know if I can help you with anything else. Good Luck and feel good--Kelly

[Ruchily]

Hi all (esp Kelly)

Did you speak with your doc before the procedure at length about the complications involved, etc. or did you get your info. here on the boards? I called and spoke to some very rude nurses ("we charge $25 a question"...can you BELIEVE they said that to me??) about some of the things I wanted to confirm that I've read on the boards.

Anyhow...I am just wondering how you got your questions answered? Did you get them answered right before you had the procedure done or at an appointment or over the phone?

Were you nervous beforehand? How did you relax?

Did you sleep most of the day after the procedure? I.E. not many any plans for later that day? About how long will it be before I'm up cooking again? (How many meals should I freeze ;) )

The doc says I have legions. Is that an integral part of IC? Does it mean/guarantee IC? What do legions mean? Does this make it more neccessary to have the procedure done than someone who does not have legions?

Thank you :grouphug: :kissing: :love: Sorry so many questions! I just want to feel as comfortable going to the OR as possible!

Thank you to my IC friends...you're all :angel: :angel: :angel:

[Ruchily]

I have been doing the diet and it HELPS! Does this mean I can skip the hydro altogether or do I still need to have it? Also, I have lesions...is this something that needs removing? Is it indicative of IC?

Thanks for your help *hugs* and :kissing:

P.S. Hope you are doing well...

Love,

Ruchily

[kjones1]

Ruchily, I don't know what legions are (did he mean lesions). I am still looking for my questions to send you but let me answer some of your questions you recently posted.

I cant believe they are charging you for questions! That is ridick! My doctor and nurses answered all of my questions. I spoke with my nurses before the surgery several times about the diet, whether I was going to get pain meds, what antibiotics would he probably perscribe, etc.. I also had a presurgical phone call a week before my surgery (through the hosipital). They gave me an overview of what would happen the day of the procedure. That helped me relax a bit.

Talk to as many people as you can to help you learn more about the process (nurses, other ICers, doctors, etc.) Ultimately you will need to make the decision whether the procedure is for you. I was in a similar position where the diet and meds were helping but I wanted to try the hydro and see if that could help even more (also wanted to know for sure).

Maybe Im lucky and have a great doctor and hospital. The hospital even called me the day after to make sure I was okay and that people were taking care of me, I wasn't having bad reactions, etc.

Do you really like your doctor? If not I maybe would look for someone with a staff that is more informative and well basically nice. I dont know though maybe as you get closer you will get phone calls for presurgical visit.

Mine was over the phone but sometimes doctors do it before hand. I also spoke with my doctor after the surgery while in recovery. I am not happy that those nurses are making this even harder for you. I want to yell at them. :)

So basically I got a lot of my questions answered by the nurses, hospital staff, and my doctor but I also got very important questions answered on the boards. ICDonna and everyone else on this post gave me great advice about their experiences.

I feel more relaxed if I know more about things. They also give you a sedative while you are waiting for the procedure and that relaxes you. Then they knock you out in the OR pretty quickly. I also tried to come to peace with the hydro and think that it was being done and whatever the result I would just have to move on from there after it was completed. Luckily I was diagnosed as a mild case and I didnt have a bad recovery.

For recovery the pain meds def helped. I was actually very wired the day after the procedure (I think it was all the adrenaline) but I just sat in bed and watched TV with my mom and got waited on hand and food. I def would suggest having someone with you for the first day if you can. It was a huge help having my mom make my meals. I crashed the day after and slept most of day two. I think I was up and moving in four days or so but that was more of a choice than a necessity. I wanted to give myself time to relax and heal. I eased back into things slowly. Like I went out to do one errand the first day. Then the day after I went to two stores.

It really an individual thing but the things that I think made the procedure work well for me were 1) a doctor I trusted 2) being informed about the procedure and what to expect after 3) pain meds, antibiotics, and probiotics 4) help and relaxation.

Of course I have the luxury of not working or being in school right now. If you can give yourself a chance to heal and read a book or watch a movie that you wanted to rent, do something you want that you wouldnt have have the time for.

Will you have someone helping you out in the beginning?

Hope this was helpful and not too exhaustive.--Kelly

[Ruchily]

Wow...you are a wealth of info. and a great friend to post such a long post to me *hugs*

I DID mean lesions *oops* sorry for the mispell! Do you know what lesions are? Are they part of IC? I saw anothe thread with IC Donna mentioning them...but it didn't indicate what they are and the correlation with IC. I'm hoping that lesions are a good reason to have the hydro...that will make me feel like I need it even more (make sense?)

The doc's nurses were being obnoxious joking that my questions were $25 each :mad: What nerve! I certainly hope I get some great OR nurses to answer all my questions!

Did you get a UTI test kit? I've read about those on the boards. It sounds like a good idea to me...that way I can test myself for a UTI. This will help me relax.

A sedative before the procedure sounds GREAT LOL I wonder if they do for everyone? I'll be looking for it :p

I'm also glad to know about the anitbiotics (I was told I would get them for 3 days after the surgery...was that your case?) and did the doc prescribe probiotics?

I have a pre-op consultation at the hospital 2 days before the surgery. They will also draw blood. I guess I will save all my questions till then and keep posting here. My doc was GREAT...spent over an hour with me at the appointment last Thur. It's his staff that had no bedside manner......I am considering mentioning it to him. I don't want people losing their job...but a talking-to might be in order!

Hubby is staying home with me for day one (he'll work from home that afternoon). Day 2 hubby will leave work early and then it's the weekend since I'm having the surgery on Thursday. So that works out well! :) I plan to cook lots ahead of time and freeze so we have all our meals prepared.

Btw, I don't work (and no kids yet) either! With all my diagnoses...it's not feasible. I was a kindergarten teacher...that was great fun! I def. miss it. But 1st I have to get well. I am def. very thankful that I don't have to work...esp. with the surgery coming up.

Thanks for all your support and for answering my questions Kelly. And for being so understanding about how nervous I am!

*hugs* :kissing: :love:

Ruchily

[lledoux_2000]

I've read that Macrobid is not the best antiobiotic to use w/IC. It sure did make mine bad - My urologist prescribed it before I was diagnosed w/IC.

[hoping4acure]

I got an allergic reaction from it (Macrobid) scared the crap out of me. I didn't know what was happening...horrible expierence.

[mela414]

When I took Macrobid 200 mgs a few years ago it gave me a rash and made me very flushed but...........i also remember taking generic nitrofurantoin in a smaller dose with no problem. It could have been something in the Brand.

[Ruchily]

If macrobid is bad...what are some good ones to ask my doc for? Cipro gives me muscle pain and I already have fibromyalgia so that's a bad bad combo for me! Thanks for any advice *hugs* And thank SO MUCH for the advice on macrobid!! :kissing: :grouphug:

[hoping4acure]

I do aree with you...some people do better on generic drugs vs. the genuine drugs and vise versa.

It was the nitrofurantoin that I took, the only reason I said
Macrobid the first time is because that is what the doctors and nurses call it when I say I am allergic to nitrofuantion.



We are just all so different.


:grouphug:

[Ruchily]

Mela, thanks for this info.! It's great to know of an anti that worked for someone :)

Perhaps I will ask my doc for this anti for after my cysto/hydro...

Thanks again! *hugs*

[kjones1]

I used Bactrim after my surgery and that didnt bother me. I think that might even be a similar strain to Macrobid. Its hard like Need2Heal says "we are all different".

I know I had trouble with Cipro and Augmentin (my two biggest flares) and for me I feel like they caused my IC :evilsmile
but I know my doctor treats other people's IC with low doses of Macrobid and they do fine. :hmm:

I also did fine with some other one thats start with an l...? I forgot the name now. But there is a poll on antibiotics somewhere around here that you can look it up. I think its listed there. Plus you can see on average how these drugs react with IC.

Good luck--KJ

P.S With any antiobiotic I would take a probiotic to keep the natural flora and yeast balance in check. But ask your doc if thats ok and/or if he recommends one like acidophilus.

[Ruchily]

So I am doing probiotics now (but I guess I should ask my doc to make sure that's ok to do...thanks for the tip...) and I will look at the thread re. antis that are safe for IC (well...safe for many anyway as we are all so diff.!)

Thanks again friends :grouphug: