I'm having surgery

[born2swim]

Hey guys,

I'm having surgery in August to explore for endometriosis and/or some structural problem related to my bladder. My doctor said it is possible to have a structural problem (injury from sports like running, but unlikely considering I haven't given birth (but it's possible, yet not likely)).

Considering I have symptoms of IC and a very strong positive to the PST, they diagnosed me with IC. So... they wanted to give these bladder meds a try (Elmiron, Elavil, Atarax, Topamax, Lexapro, instils, diet, etc). Since they don't seem to help, they have decided to explore just to make sure I don't have something else complicating matters (or something else entirely). I will talk with the doctor again at the end of July as a pre-op and to make sure that is what we should do. I have one more thing I want to try (in addition to all these meds). I am going to order Cysta-Q and give the month of July to that to see how it helps. I have time to make sure I have done everything (short of sacrificing a goat at midnight as Carolyn said) to help my symptoms. My surgery date is August 7th (it's a Tuesday). I will find out at my pre-op appointment on June 25th what time and what to expect. I've had 2 other laparoscopic surgeries, so the recovery is a breeze (unless he has to do something like endometrial abalation or bladder fixation, etc). Just thought I'd let you guys know what's going on...

I'm scared to have a foley. I'm scared to have surgery to just look, when I could have nothing wrong (and risked surgery for nothing)... but I had those fears about my gallbladder because tests were not showing trouble. Finally one test did and we took it out and I felt great. But I just can't stand feeling like this! Why doesn't anything help? It's been months and I practically only eat oatmeal...

[ICNDonna]

If you do end up with a foley, it's a good idea to ask the nursing staff to tape the drainage tube to your leg to be sure it doesn't pull. I do really well with a foley as long as there's no tension on the tubing.

Warm hugs,
Donna

[born2swim]

Thank you for the suggestion Donna! I can't stand having a foley and the last few instillations have been killing me (even with a pediatric cath.). The instils didn't really help me.

[leelee88]

Born2swim,
Did you ever have cysto/hydro?

[justice4j]

New to forum, but 22 years of IC, LONG

Hi,
I just joined the forum last night. I was diagnosed with IC in 1986, but believe my symptoms began as early as 1970. My first really bad flare was in 1980. I had a cystoscopy without hydrodistention, so it remained undiagnosed until six years later when I was in so much pain I could barely walk. Then the hydrodistention was done, and I was diagnosed.

I'm an R.N. with 13 years ER and 4 years OR experience. However, I haven't been able to work as a nurse for the last 12 years. IC is not the only reason. I'm one of those all too typical patients who have a myriad of other co-existing illnesses : hypothyroidism, IBS, allergies, asthma, migraine headaches, restless leg syndrome and fibromyalgia.

I have some bad days, but mostly am able to manage quite well considering. Just my health is not predictably reliable enough to work a regular 8 or 12 hour job. I have a lot of times when I'm very tired.

I've been doing heparin 50,000 U in 5 cc, Bicarb 8.45% 4cc, and Lidocaine 4% for the past year. Previously, I instilled Heparin and Lidocaine 2%. I get much better relief with the Bicarb and 4%.

I don't usually do instillations unless I'm in a bad enough flare. I can't afford to even though Dr. Parsons would like me to do one per day routinely. I really appreciate being able to administer the instillations myself at home.

Believe it or not, I have an averagae of 2 cups of caffeinated coffee per day.
I love Italian, Mexican and Thai food, and my bladder is usually okay with that. Sometimes foods irritate my IBS

I worked my way up to high doses of Atarax, because allergies are the culprit in most of my flares. I also find that the coffee enables me to take 25 mg. of Atarax during the day.

Here's my complete regimen:
Elmiron 300 mg twice a day
Atarax 100 mg at bedtime, and up to 25-50 mg every four hours
Urelle for IC and IBS flares ( the Levsin antispasmodic component helps IBS)
Instillation:
Heparin 50,000 U in 5 cc
Lidocaine 4% 5cc
Sodium Bicarb 8.4% 5 cc
DMSO 5 cc when nothing else works Vicodin for extreme pain only

I manage the worst flares by taking the maxiumum allowable dose of Atarax, instillations, and Vicodin. And, I lie down. Seems if I get off my feet, it helps alot. I try to sleep alot while my bladder calms down.

I feel like I really have a handle on managing IC. I have an absolutely wonderful boyfriend who allows me to be myself, and appreciates me as a whole person. He loves me enough to overlook my faults, like my temper, and values my good qualities. I play jazz piano and my boyfriend plays all the basses - upright, stick, and hand held. We play music alot together and enjoy each other's company. We live in southern California with my three standard poodles, Layla, Hope and Binky.

I look forward to reading many of your posts.

Anyone having any tips about getting assistance for prescription meds., please let me know. My fianancial situation is pretty grim, as Blue Cross has cut benefits to shreds over the last few years.

Thanks for listening! Jan

[born2swim]

Ronda, I never had a hydro/cysto. I had 2 regular cystos and they both looked perfectly normal.

[born2swim]

Jan, boy you have had a rough time with IC, but I'm glad you can manage your symptoms well (and that you have an understanding boyfriend). I am single and I feel like I will never find someone to understand my constant need to pee, etc. I am also in med school (doing a pre-matriculation year before starting) and I can't afford to lie down and rest when I feel bad. All the drugs I am on make me feel like I am in a stupor and I want to sleep all the time. It's so frustrating. I am having surgery in 3 weeks to see if I have endometriosis bothering me (instead or in addition to IC). I just wish something helped. I do not have trouble with diet unless I ingest something that is a diuretic. Then I'm in trouble because my bladder capacity is so small.

[leelee88]

Yea. Born2swim.. I figured that out after a few more of your post from you...lol

[Briza]

Alyssa,
How long have you been on Cymbalta? It put me to sleep for an entire week...I've never had that side effect with any other antidepressants and I've tried quite a few. I know leelee has had success with it, others too, but if this something new to your regimen I would consider talking with your dr about it. The sleepy side effect it had on me may have gone away with time, but I'm a teacher full time and didn't have the time to take off work for the side effects to go away! I also have to be certain that my meds don't affect me in ways that make me not able to drive or work.
Did you get the tips I sent you to make a hydro easier...I've also had a lap and like you said recovery was a breeze...compared to a hydro. If you didn't get them, let me know, and I'll send them again. If when you wake up from your surgery still cathed, have them replace it with pediatric size cath if the cath you have in is not tolerable. This is something you need to ask for a couple days before your surgery, since they might have to order it from some place in the hospital and when I needed the small cath, it took 2 days for them to receive the order, and this was an emergency situation!

For any single gals reading this, yes it does take an understanding man to deal with IC, but it can be done. I am newly single since last summer and have been able to date and tell about my conditions, if it gets to that level, without much problem...if I feel it's going to be a problem, then it's dating only if I enjoy the guy's company, and actually has been a good experience and has taught me to not rush things, just date and have a good time, without taking it to the next level, and you'll be amazed at how much that may change what you feel about a guy, and if you still don't feel like he's the one, then you have made a good male friend, and those are good to have around....especially if they know anything about fixing cars and lawnmowers and how to use the weedeater (I'm terrified of that thing)

[born2swim]

Alyssa,
How long have you been on Cymbalta? It put me to sleep for an entire week...I've never had that side effect with any other antidepressants and I've tried quite a few. I know leelee has had success with it, others too, but if this something new to your regimen I would consider talking with your dr about it. The sleepy side effect it had on me may have gone away with time, but I'm a teacher full time and didn't have the time to take off work for the side effects to go away! I also have to be certain that my meds don't affect me in ways that make me not able to drive or work.
Did you get the tips I sent you to make a hydro easier...I've also had a lap and like you said recovery was a breeze...compared to a hydro. If you didn't get them, let me know, and I'll send them again. If when you wake up from your surgery still cathed, have them replace it with pediatric size cath if the cath you have in is not tolerable. This is something you need to ask for a couple days before your surgery, since they might have to order it from some place in the hospital and when I needed the small cath, it took 2 days for them to receive the order, and this was an emergency situation!

For any single gals reading this, yes it does take an understanding man to deal with IC, but it can be done. I am newly single since last summer and have been able to date and tell about my conditions, if it gets to that level, without much problem...if I feel it's going to be a problem, then it's dating only if I enjoy the guy's company, and actually has been a good experience and has taught me to not rush things, just date and have a good time, without taking it to the next level, and you'll be amazed at how much that may change what you feel about a guy, and if you still don't feel like he's the one, then you have made a good male friend, and those are good to have around....especially if they know anything about fixing cars and lawnmowers and how to use the weedeater (I'm terrified of that thing)

Briza, I've been on Cymbalta for 3 weeks now. I'm still really groggy during the day and honestly I feel more "oh hum" on this than Lexapro. I don't think I like it very much. I have an appointment with my internist this week and I'll talk with her about it. I can't afford to be tired with med school classes. I need to get this resolved soon!

I hope the surgery helps me. I don't know if my urogyno will do a hydro, but I will see him this week too and talk about all that. I did get your tips on hydro and I really appreciated the advice! I just hope if I get it done, it will help me!