Diagnosed on Friday...

[Lexie]

Hello :) I had my cysto/hydro on Friday and was diagnosed with IC. Kind of bittersweet -- I'm glad to know what's wrong with my body, but sad that it's IC (I'm sure you all know the feeling).

The cysto/hydro went very smoothly. All the nurses and doctors at the hospital were wonderful. I had my mom, dad, and godfather at the hospital with me. I gave them a typed list of questions to ask the doctor after the surgery.

Here's the list of questions (I've typed in the answers that my doctor wrote in):
- Was I tested for mycoplasma/ureaplasma bacteria? YES


- Based upon this procedure and my symptoms, have you diagnosed me with IC? YES


- If so, based upon the appearance of my bladder and my symptoms, would you classify it as mild, moderate, etc.? MODERATE (THOUGH HE WAS REALLY ON THE FENCE ABOUT THIS QUESTION. HE SAID THERE'S REALLY NO WAY TO TELL BETWEEN MILD AND MODERATE. I WAS REALLY UPSET THAT HE SAID IT WAS MODERATE BUT HOW CAN ONE REALLY DIFFERENTIATE?)


- Is my bladder inflamed? If so, which part of my bladder appears inflamed?
ALL PARTS

- Did you note any glomerations (sp?) or pin-point bleeding? Ulcerations?
GLOMERATIONS

- Was a biopsy taken?
NO

- Was my urethra inflamed?
NO

- Were any pictures taken that I can look at?
YES (HE GAVE THEM TO MY FAMILY BUT I'M SCARED TO LOOK AT THEM)

- What was my bladder capacity? Is this capacity considered "normal"?
600 CC'S. A LITTLE LOW.

- Will I experience relief of my symptoms from this procedure? Will my symptoms initially be worse? YES & YES


- Based upon the results of this procedure, what is my treatment plan? Is there anything I can do immediately to relieve my symptoms? Rescue instillations?
RESCUE INSTILLATIONS -- YOU WILL BE PAIN FREE IN ABOUT 2 MONTHS BASED UPON APPEARANCE OF YOUR BLADDER AND YOUR SYMTPOMS.

- Will I be given any pain meds and/or antibiotics after this procedure? What can I do to make myself more comfortable while healing?
YES -- WATCH DIET (PRELIEF) & MOTRIN.

After the surgery, my doctor came out and told my family that I had IC. When I woke up my bladder was burning, but the nurse in recovery gave me some IV pain meds and they helped. I was also given Percocet and in an hour was pretty much pain free. I rested all weekend and felt pretty good. I had my first rescue instillation yesterday (with heparin). I told the doctor that I want to be very agressive in treating this condition. He gave me a script for Elmiron, which I'm going to take orally and use for the remainder of the instillations. The doctor seemed very confident that I'd be okay with just the rescue instillations, but I want to cover all my bases and be as agressive as possible.

By the way, the doctor liked that I had questions printed out for him. And, my parents and godfather (who's a doctor) loved him. They said he was so friendly and also very optimistic and told them without a doubt that I'd be okay in a couple months. Aside from the fellowship that he did on IC, he's been treating it for the past 11 years, so I feel like I'm in good hands!

[ICNDonna]

Do I understand that you will only be taking elmiron for a short time? The reason I ask is that it can take six months or more before it does anything. Another potential problem is motrin. Many ICers find ibuprofen medications are a problem.

I'm blad your procedure went well.

Warm hugs,
Donna

[Lexie]

Hi Donna,
I plan to use Elmiron instead of Heparin for the remainder of the instillations and then take Elmiron orally for however long I need to take it (forever?!). I wondered about the motrin, but my doctor (according to my parents) was pretty adamant about taking it. He said that it would help to reduce inflamation. I'm still taking pyriduim as well. I was feeling great up until this morning. Not sure what happened. Might have been something I ate for dinner last night...

[mimi1027]

I am happy your procedure went well and that you have a definite diagnosis. I hope your treatment plan works and you are pain free soon.

[lisabar36]

I am glad everything went well, also glad you seem to have a good treatment plan in place. I hope you feel better and better. Be careful with the motrin, I know when I take it, I have alot of bladder pain from it. I hope its ok for you, we are all different in what works. I actually took tylenol when I needed to. I always got name brand and I would get the extended release. They didn't hurt my bladder so I just stick with those. I hope your getting some rest and feeling better. :) Lisa

[vm]

Hey, you! So glad to see your update!!! :)

I'm glad it seemed to have gone so well, Lexie. Sounds like your uro is wonderful and bonus that your godfather the doctor thinks so, too.

I'm just happy you know what is going on now so you can get on that road to feeling GOOD. You are so proactive - I know you'll be doing whatever it takes to work towards healing that bladder. :)

[Lexie]

I'm very relieved to finally have a diagnosis. I've had 2 bladder instils so far -- the first one with heparin, the seond with Elmiron. I actually was supposed to wait a week in between but ate something that aggravated me and called my uro's office and they had me come in this morning. They mixed the Elmiron in the "cocktail." The physician's assistant told me to hold it for at least 20 minutes, but I held it for over 2 hours. It's already helped!

I just really need to watch my diet now. I think I've lost close to 15 lbs over the past two months, which is crazy because I was thin to begin with (I'm 5'7" and about 120 lbs right now). I'm just scared to eat most things because I'm worried they'll make me flare. I know I can McDonald's vanilla milkshakes, so that's been a staple of my diet for the past week (awful, I know). On the upside, I'm staying with my parents for the next week or so and they've been cooking things that are IC friendly for me (my boyfriend is in California for work for 3 weeks and I couldn't bear the though of being alone at a time like this).

I am having one awful problem -- I'm terribly constipated from the percocet that I was given after my surgery. It's AWFUL! I've never had this problem before. I took Milk of Magnesia capsules for 2 days and nothing. It's painful at this point. The doc told me to get Miralax. Anyone had any luck with that? I took some this afternoon. Doc said the constipation is probably putting more pressure on my poor bladder too...ugh. I never ends! LOL.

[Claredale]

You definitely wrote up a great example for others to use for their surgeries! Thanks for posting it! We will have to remember where those question are!

I would call your doctor about the constipation and ask him about possibly using a suppository to get things moving a little quicker. It isn't aways "comfy" feeling, but I remember after every time I was put to sleep, it was as if my digestive system stalled. I normally don't have constipation issues ever since my doctor told me to take Milk of Mag and mag supplements. Now that I am taking fewer pain meds, I have decreased my MOM. I used to take a full teaspoon every night. For me Milk of Magnesia and the Miralax work about the same. I take MOM, about a teaspoon every other day now as well as Magnesium supplements, watch what meds you are on with meds to help with constipation because it could mess with the effectiveness.

T83

[Briza]

Hi
I was sooo happy to hear your hydro went so smoothly. I know you were nervous about it, especially when the date was bumped up. It sounds like your dr gave you great post op care while in recovery! I wish I had received the same when I had my hydro!

Your list of questions is fantastic...I saved a copy of them...and that was a great thing to share with all of us. Thank you!

The constipation...yes, that was an issue for me after my hydro, and for many people it seems post op. The anesthesia, the pain meds, bed rest, all those can contribute to slowing down your intestines and bowels. I hope you can get it resolved soon, because I know how painful it can be. Definitely talk to your dr. I know that suppositories and enemas aren't anyone's idea of a good time, but if that is what is required unfortunately you gotta do it, b/c you don't want things to go from bad to worse.

Your dr is correct in saying that being stopped up may be putting pressure on your bladder.... I know it did on mine, and it did not feel good. So definitely talk to your dr ASAP on what he recommends and if you are feeling well enough to get up and walk around, that is one thing that helps very much in getting the intestines and bowels moving as they should.

Best wishes, keep us posted!

[elamar]

Miralax is fine to use, just wanted to let you know it can take a few days to get things moving - make sure you read the box! If you are in dire straights there is always over the counter doculox. It can move things along alot quicker, but I wouldn't check with your doctor first. It can cause some bad cramping for everything trying to come out so quick! I used exlax before and must have had 10 bowel movements in one afternoon! It was good to get cleared out, but I had very intense pelvic cramping during the time - it was like being in labor! Good luck to you.

[Lexie]

Hello :)

I used Miralax yesterday afternoon and took Milk of Magnesia last night and was able to go this morning -- but it HURT! The Physician's Assistant at my uro's office said the Miralax and MOM together would be okay. I took more Miralax this morning. Hoping that will help clear me out a little more.

I had another resuce instill yesterday. They told me to hold it for at least 20 minutes but I held it for like 2 1/2 hours. They seem to really help for about 12 hours and then I either eat something I shouldn't (I'm trying to be strict with the diet) or the meds wear off. I dunno. I know it's been less than a week since I've been diagnosed but I'm just so discouraged and depressed. I guess I just have to keep telling myself that it will get better...it's just so hard to do that right now.

I'm also worried because I'm having pain in my upper back right where my kidney's are. It's sore, but if I press on them it really hurts! Maybe I got an infection from the cysto/hydro or one of the resuce instills and just can't tell because UTI pain feels like IC pain. UGH. I just don't know what to do...

[babygirlh1]

Wow - I am very impressed with all of the questions that you had for the doctor. I wish I had been more prepared when I was diagnosed. I think that I was so focused on my problem being endo related (since I already had several surgies for endo) that the entire IC thing took be my surprise. I wish you a quick recovery and glad you have a treatment plan all ironed out. When I was first diagnosed she gave me a phamplet for Prelief and a green brochure on what to eat and pushed me out into the world. :rant:

[vm]

Lexie - I always hated when I flared and could not tell if it was a UTI or a flare. And then trying to decide whether or not to call for a UA and culture or not b/c I was afraid they'd think I was bothering them if it turned out to "just" be my IC.

That said, when I've been in that position I've always said something like, "I am having a flare and I'd like to rule out the possibility that it's been caused by a UTI."

You've had a lot of urethral "invasions" ;) recently - it's probably worth checking to see if you do have an infection.