Second Hydro and doing worse

[Peggi]

Hi All. It's been awhile since I've posted; however, I am on the board every day reading and listening! It's such a comfort to know I am not alone (by far) in this I. C. world! (THANKS). First of all, I was diagnosed with I. C. 15 months ago though have truly suffered from the symptoms for 2 1/2 years. Then of course, it took them 10 months to finally diagnose me. I currently suffer with medium to severe I.C. and am on several pain meds; I tried Elmiron, Vistaril, amongst many others but they did not help. I just had my second Hydro Thursday, 2/28/08 and it has made it worse. In reading various posts, I noticed quite a few people have not done well with a second hydro....any idea why? The first one relieved 50% of the pain for about 5 months; this one has made it 50% worse???? Also, would anyone know if it would be worth it to try the Rescue Instills (after 2 Hydro's)? I've never had them and my Uro is always asking me to try them; I just assumed that a Hydro had a higher percentage rate of relief; though, I'm not so sure anymore. Thanks (in advance) for any replies and help!

[samandmichelle]

Michelle didn't have a problem with the hydro because her uro put in a bunch of numbing jelly. She had great success with a rescue instill prior to the hydro/cysto. Best of luck!

[Kirs10]

My old urologosit would only do a Hydro every two to three years, and then my new one says that the new studies say that they are less effective everytime you have them done. Personally i think that is a crock. the first two worked and gave me relief for the first 4-6 months, the third one didn't help at all. I am not sure why, except that i have been in alot more pain before this one, and they had tried the interstim and it ws not successful, so I think that it was just that my bladder is so worked up that not much is going to help it.
I hope that this is helpful.
Kirsten

[ICNDonna]

It's only been about two weeks since your hydro --- it still might help. Have you been checked to be certain you don't have a post op infection?

Donna

[Peggi]

Hi Donna, you were right (as I forgot to mention in my post) I did have severe pain in my kidneys as well as pelvic and lower back a couple days after the hydro, so I went to my Uro; they took a urine specimen and sent it off to the labs. They called me 3 days later and said I had a mild infection; put me on Cipro for a few days...and, luckily the pain in my kidneys has gone. However, the I. C. pain (bladder, pelvic, lower back, urgency, frequency, etc.) has not improved and continues to worsen every day. ???

[mlzippy7]

Peggi I am sorry that you are having a hard time. I can tell you when I had my hydros I was 100% worse. My pain was out of control that I had to be hospitalized for a week. My frequecy, urgency and bleeding got way worse and still hasn't gotten back to the way I was before the procedure and that was well over a year.
Again I am so sorry. I hope you are feeling better soon.

[rachdfw]

Hello, Peggi, it was my obgyn who discovered I had IC with just my symptoms. I'm currently on Elmiron and Elavin (this drug was used for mental health moons ago but my doctor attests that it helps the bladder). Another drug he prescribed was Sal something. I'll look it up and provide it to you in another reply. (I just had a hysterectomy so my walking is limited). Anyway, another thing you should really try is your diet. Food allergies is one of the causes. I, for example, discovered that I when I drink any red colored drink, I'm in severe pain. You should probably keep a food journal and try to narrow/identify a pattern of what you eat too much of. Yogurt is another taboo for me. As for rescues, ask your urologist if you could have a rescue with elmiron in it. Thats another thing my doctor suggested if the regular rescue didn't relieve any pain. My doctor's office also had me come in for pain management type exercises. Its not very pleasant but it does help. Basically they insert a small (like inch tall) tube anally to first get an idea of how strong your muscles are and then eventually they help you exercise those muscles near the bladder. Drink lots of water too and avoid carbonated drinks and juices as often as possible. Trust me, ever since my obgyn diagnosed (sp), my pain has been manageable and when I start to hurt, I self medicate with just those things I mentioned and it works. I hope this helps but my obgyn keeps current on this IC thing because many obgyn's usually misdiagnose.

Good luck and hope you feel better!

[mom_in_ma]

Peggi,
I'm sorry you're having such a rough time. An infection in an already inflammed bladder (from the hydro) is going to take some time to heal...at least a couple of weeks. That said, my uro doesn't do hydros anymore because he says they have limited thereputic value for most people. I also think it depends on whether you have classic IC (where your bladder shrinks so it's good to get it stretched) or more nerve inflammation. Some on the boards have had good luck with them, others....have had your experience. Have you talked to your doctor about your increased pain? Maybe they have some other ideas for you.

[Peggi]

Thank you ALL so much for the replies; as always, they are so informative and helpful. It has been 2 weeks today...and the pain is the same (if not a bit more severe). I have an appt with my pain mgmt doc today (and my Uro next week); and I will surely pass on the info I have learned from all the posts! Thank you, again...will keep you updated!

[suzz]

Just had second hydro. Things are not so good. Checking to see if I am logged in, if so I will write more.
suzz

[TinaM]

Hello all
I would appreciate if you experts might be able to help me understand my cystoscopy report from Feb. 06. The doctor wrote as follows "included diffuse petechiae throughout the anterior and lateral bladder. Functional uterine orifices bilaterally and normal-appearing bladder mucuso prior to the procedure and a maximum capacity under anethesia of 600 cc". She further writes "The bladder mucusa was noted to be normal throughout. There was no intrinsic or extrinsic lesion noted and the bladder was instilled to capacity with the water at approx. 65 cm above the pubic symphsis. ................. The bladder was then drained and the capacity was noted to be 600 cc and there was noted to be diffuse petechiae at the anterior and lateral bladder. No other abnormalities were noted. Functional ureteral orifices with clear efflux were noted. The uterus was small, retroverted, approximately 8 weeks size. There was no adnexal mass and there were no other palpable abnormality."

My question: what is diffuse petechiae? I have seen pics of damaged bladder on this site? Is that how my bladder is? All the red bloddy veins exposed, inflamed, damaged?

I asked my present doctor to tell me how bad my bladder was in 2006, he didn't even look at the report but started giving me advice on how I can get bladder instillations done in his office (not a very interested doctor). The way I like to deal with diseases is to at least understand it a little bit first before jumping to treatment. Since I don't have any extreme severe pain right now, I would really like to try some alternative treatments first.

Anyway, just in case this interests anyone, I am shocked to realize today that maybe there was a doctor at Kaiser in July, 1986 who knew something about the disease of IC. I was only 29 years old and just went to see him to be tested for allergies. I wasn't even suffering from any severe allergies at that visit, but just wanted to get it done for whatever reason. After doing the injection for allergy tests, he told me that in his practice he has seen some people who are as sensitive as I am, and that they at Kaiser were doing a research as they find that I belonged to that group of people who were different, or maybe more sensitive than others. He had told me that a person like me should never ever take aspirin, and that it could even cause death if I took it. Ever since then, I have always put down on my medical information files, that I am allergic to aspirin. I have never experienced any allergies with aspirin, as I never took it, after he told me that. The interesting part is that this doctor said in his research, he was looking into the possibility that people like me were actually sensitive to salicylates, which is a natural occurring chemical, the salicylate radical. He had given me a 30 page or so document from his research, and it mentions a few foods which contain salicylates, they are tomatoes, cucumbers, oil of wintergreen, tea, cloves, aspirin, etc. I still have this document with me to date, 21 years later. I think this doctor was on to something, regarding IC disease.

Do you think we are all allergic to salicylates?

A bladder is an organ just like kidney and liver and I am afraid to let doctors touch it. I am sure you all take your pros and cons before doing any procedure. I am trying all sorts of herbs right now. I will start with a more conservative approach first and see how it goes. I am really feeling lost these days. This disease is something else, isn't it?

Any nice person who can shed some light on my report, I thank you a million times in advance. Do you think my bladder is in a very bad condition? I have had continuous frequency/urgency all the way from 2003 till to date. I didn't pay attention and just took the inconvenience, until lately, when I got the pain a few times. I have now realized there is something serious going on with me and I need to get this treated.

Lastly, I really regret having had the cystoscopy done. I wish I had never had it done.

Thanks to all for listening to me.

[SandyRN]

Diffuse petechiae are the little red places you see on the pictures. I wanted to address your question about salicylates. I really do not believe we are all allergic to them because I am able to take pepto bismol (a salicylate) and asprin as I need it without problems and have never had problems other than some minor bladder issues as of late with the foods you mentioned. I'm sure some of us are, but certainly not all of us.

Be careful with your herbs. If you are going to go that route please only take one at a time for at least a week to see if it causes you any problems bladder wise. Also, if you ever have to take an RX medication make sure you tell your doctor what herbs you are taking.

You may regret having it done but most of the side effects of the procedure wear off rather soon...usually within a couple weeks to a month (in my case a month) after I had the procedure done. At least you had someone in your bladder to rule out cancer, which is always a concern for us so that is a plus so that is something to consider and hopefully make it somewhat worth it for you.

As for if your bladder is in very bad shape or not it doesn't sound horrible. I've heard of much worse reports here on the board so you may be lucky in that respect. It sounds like you do have IC though and knowing that is the first step in being able to treat it.

Sandy

[GriffsMommy]

I have only had one hydro as mine was only done to verify my diagnois. It did not help me at all so unless somewhere down the road I get much much worse and a dr feels the need to take another look at my bladder I have no plans of having another one.
As for the rescue instills alot of people find at least some relief from them. They usually have some type of numbing medicine in them, mine has lidocaine so if nothing else it numbs my bladder for awhile.
It might be that you need to give yourself a little more time and then you will start to feel better like you did after your first hydro. But if you don't you might want to consider the instills. They are very easy to do and many of us do them at home and alot of us find relief. Good luck.

[TinaM]

Thanks to both SandyRN and GriffsMommy for replying to my post. The only herbs I was referring to were MSM-Glucosomine from GNC, The Desert Harvest Aloe Vera, Prelief, Wild Yam and RX Elmiron. These are all I take. My problem is that I have no pain, only frequency at nights and urgency sometimes. Unless I write down all the liquids I drink and the number of times I go each day, it is hard to figure out what food/herb is causing a problem and what is not. What would you suggest? How does one figure out if something is causing a trigger? I am not sure.

The reason I said I regretted having the cystoscopy done is because, I guess after seeing the bladder pictures, I freaked out. I feel that I am one of those people who practices mind over matter sort of thing, I sort of visualize in my mind what is going on inside my body, either think and make my thoughts negative or learn what it is and make my thoughts positive towards healing. Not sure if I am making any sense.....but ever since I saw those photos of the bladder, and after reading my report, I am now imagining that my bladder is red and inflamed, thinking negative. In one of those pictures one can see that the veins and markings are all there, however, not broken or dark read, but after the procedure in the after picture, those blood vessels, arteries are all broken and look really painful and damaged. I guess from this picture, it really struck me that cystoscopy is a rather invasive procedure.

The Elmiron seems to be working for me, however, my nighttime is the worst urgency/frequency wise. What is that all about? Why just nighttime? During the day, I think I am pretty controlled with Elmiron.

Once or twice when I have had mild pain, I have described the pain to doctors as having a "tooth ache" in my pelvic area. I have also described it as similar to giving birth, the legs shaking. Right now when I get up from my desk I experience tightness on my upper thighs. Is that normal to experience that?

Thanks again for your responses.

[TinaM]

SandyRN, I just wanted to say one more thing, thanks much for pointing out that yes, the cystoscopy was worth it ruling out cancer, yes, that really was worth it when you think that way. Of course, if I didn't get it done, then I would always have wondered whether it was in fact cancer. That makes me feel better.

[SandyRN]

I wish I could tell you why nighttime...that is one of the biggest questions here. It is common though, that much I can tell you. I generally get up myself at least 2x a night, sometimes more depending on how unhappy my bladder is.

About your legs it might just be a muscular thing or it might have something to do with the pelvic nerves. The more I learn the less I know I think! IC is such a mystery sometimes and I think most of us have these weird symptoms and we have no idea where they come from. I wish I could help you more.

I don't know anything about Wild Yam, but the others are pretty common around here. Especially the prelief!!! I couldn't live without that stuff sometimes!

At any rate, even though I haven't said much that is helpful to you, we're glad you're here and hope you get a handle on your bladder problems. We've all been where you are right now....sort of just trying to absorb the fact that you've got a real disease/illness or whatever ya wanna call it.

Sandy

[TinaM]

I really appreciate all the different perspectives on this disease and am learning a lot. I know that my frequency/urgency started in 2004, way before I did this diet, called Medifast. Have any of you heard about it? It is an awesome diet plan, which really makes you lose weight. People have lost hundreds of pounds of weight, and become healthy. My own personal story is that my cholesterol came down from 198 to 161, I lost 20 lbs. fairly quickly, everything was wonderful, and then came this horror, IC. I had to stop the diet immediately, and have since gained 6 lbs. back. I am really angry about the turn of events. I was doing so well, I still have 20 lbs. to lose, but am so afraid to go back on this diet. It is a pre-prepared diet plan, where you eat 5 pre-packaged meals like bar, shakes, soups, cracker type snack, oatmeal.......and then one lean and green meal a day, which includes 1/2 cup of cooked veggie, 1 cup of salard greens, and 7 oz. of chicken or fish or other meat. This diet kept me full all day, I was really energetic when I was on it. I cannot say for sure, whether my bladder was triggered by it, as while on the diet, my day was not very different from any other average day. I would give anything to go back on this diet Medifast, but now I am so scared, in case I damage my bladder. Would you experts out there know whether something like Medifast (highly successful for overly overweight people, doctors recommend this diet and many people have gotten off medications, and successfully lost weight to improve their health) would be too dangerous for an IC bladder. I am not extremely overweight, maybe just 20 lbs. Please look at the nutrition values below. I am really desperate to go back on this diet, but am so afraid. I do not wish to ever develop severe IC and am trying my best to not damage my bladder anymore than what it is already. Thanks.

Calories: 100-110 Total Fat: 1.5 grams Saturated Fat: 0 grams Cholesterol: 0 mg Sodium: 135-180 mg Potassium: 280 mg Total Carbs: 15-16 grams Dietary Fiber: 5 grams Sugars: 1-2 grams Protein: 11 grams Vitamins & Minerals: 2-60% daily value

Product Claims:
Also Formulated for Diabetics, Kosher Dairy, Vegetarian Endorsed, Caffeine Free, Lactose Free, Heart Healthy with 7.7-7.8 grams of soy protein.

To name some ingredients: rolled oats, soy protein isolate, dehydrated apples, calcium phosphate, spice, soy lecithin, salt, potassium chloride, maltodextrin, magnesium oxide, acesulfame potassium, modified food starch, ribloflavin, vitamin K-1, Vitamin D-2, biotin, folic acid......etc.

Please tell me what you think? The weight loss gives a ton of health, it is incredible as you start to move faster, your knees feel great due to less weight, you are light, have normal cholesterol, everything just improves tremendously. I spent over $1000 in 7 months and lost 20 lbs........this was a really good time in my life. And now everything seems to be over. I am slowly gaining the weight back, now that I have no idea what to eat, except, rice, milk and vegetables, no fruits, no proper nutrition.

Please help, if you can suggest what to do. I was wondering, what if I mix baking soda with the powerded Medifast food and then prepare. Do you think it could make the food alkaline? I would love to go back on Medifast for say another month or two. Do you think it is a really bad idea? Please check out www.mymedifast.com thanks so much for reading this.