• Posted by Cathy
  • 16 Aug 2010

Scars, scars, and even more scars. Some scars tell me where I’ve been. Those scars are painful yet they are also a comfort to me as well. I’ve known what happened with those scars, and the pain I endured while those scars were fresh. Those scars tell my story up to this point; they say where I’ve been and what my life and IC was like then. Now I have new and fresh scars. Scars from my neobladder, BIG scars, the biggest scars I’ve ever had. I have one that is 7 inches long, which creates a new me, and the other is 3 inches long, and that is there to cover up what had been and where I have been for the past 2 years.

These are the scary scars. The ones that come with doubt, fear and uncertainty. Will I stay at a low pain level? Or will my IC shadow come back with a vengeance? Was this surgery a mistake, and will it make things worse then what they were before? There is the possibility that I will get worse. But so far I’m feeling good my, my quality of life has already improved tremendously so that is telling me I didn’t make a mistake in deciding to have this surgery

So where will these scars of uncertainty bring me? There are only 2 ways it could go, good or bad. So we’ll see how it goes from here.

Written 1 month after neobladder surgery

  • Posted by tuckersmimi
  • 27 Jan 2010

I had a hysterectomy about 4 yrs ago because of a cystocele. Everything went fine after my recovery time.  After a couple of yrs I started going to the bathroom a lot more, having infections, and basically was so tired i did not even want to get up of the mornings. I did not want to think about  something going wrong so i put it out of my mind until last Christmas when we made a trip to Iowa to pick up our grandson and before I got there I could not go to the bathroom. After many trips of sitting in a hot tub I finally got things to working and when I got home I made an appointment with uro, after several trips and some testing he confirmed I had ic and pfd. I had never heard of ic so I stopped on the way home to pick up a handbook which told me just about everything I wanted to know. During this month I was also diagnosed as having fibromyalgia, rheumatoid arthritis in hands, and in knees and lower back, all of this explained a lot but I was scared, mad, depressed,then back to mad again. For the next few months I could probably count on one hand the times I was out of pajamas and recliner! My heating pad and bathtub were my new best friends! I really don’t know why everything hit me at one time but it really changed my life and not for the better. The pressure and pain got continuously worse until Aug of 09 I had to have bladder support surgery again. Uro told me it was nothing that I had done he suspected it was the ic to blame, anything out of the ordinary throws my bladder into a fit so needless to say after this surgery it was  a month before I could actually go to bathroom like a normal person. Things have been fairly decent until now and the spasms and pain has started again. Uro told me at last checkup I could do no more lifting, or straining of any shape form or fashion, he said it would be the repetitious daily things that would get me into trouble so that meant no more keeping grandchildren…I cried all day.  It has been 5 months since surgery and if I am on my feet all day long I feel like everything is going south again. I am lucky in the fact I do have someone to help with the housework and my mom helps me daily.  It is so frustrating because I WANT MY LIFE BACK!  At a time when I should be enjoying myself I have to deal w/pain every day. I do worry what the future holds for me, I realize it could be a lot worse and I am thankful that I am not in as much pain as a lot of people I have talked to. I try and watch what I eat and I have found a few foods that really set things off. I have only had to have 2 instills  but I think I will probably have to start them again, I take trammadol/Tylenol 3x a day plus methocarbamol 3x a day, so far it kinda keeps things under control but I still have a lot of spasms especially at night. I really hate being so negative but I’m still kind of a newbie to all this, you see I have always been a take control, get things done person…and that is not happening anymore.

  • Posted by Cathy
  • 15 Dec 2009

10 more days until Christmas!!! Well, this is normally the most stressful time of year with making sure trees are decorated, cookies are made and gifts are bought and wrapped! So this is a very very hard time of the year with people with IC. Stress gives us more pain. So we really need to make sure that we keep our stress level down. There are some great relaxation CD’s on the Interstitial Cystitis Network website. There are ones specifically for IC. I have one, and it is a God send! I use it at night to relax me enough to go to sleep, but after you’ve listened to it enough you can use the breathing techniques in order to calm yourself down and get your pain levels down. So the other thing we have to watch out for is the holiday food!!! We all LOVE to have all the good food we only get about once a year. We all love it, and it’s so good, but there are some foods that we just can’t have because of our IC. It will give us a HUGE flare up, and I know I’ve spent the past 5 Christmas’s in extreme pain. So I’m trying to think of everything that could help us all have a good holiday. One medication that I found to be WONDERFUL is Prelief. I take it before a meal and it works wonders. I’m not saying take it and you can eat anything! But it does help with the acidic foods. It is meant to take the acid out of foods. I would tread lightly. It does help, but I wouldn’t go and eat everything acidic in the world. If there are some foods that you really enjoy eating at the holidays and you know it’s going to make your pain level go through the roof, use the Prelief. I would try it before the holidays just in case. Try it with some spaghetti sauce, or something that really bothers you and see what it does for you. You just take it right before you eat and it helps a lot! You can buy it over the counter. There are some pharmacies that don’t carry it. So check your pharmacies now and see who carries it. I checked Rite Aid and they were one of the pharmacies that did carry it. If they don’t have it they can order you some and you’ll get it within a week, normally within 2-3 days. So try the Prelief see what it does for you and hopefully you can eat some of the wonderful Christmas foods that you’ve enjoyed so much, but make your holiday horrible. So everyone enjoy I hope that some of the things here will be able to help you enjoy your holiday!

  • Posted by Cathy
  • 29 May 2009

I’m very angry, and upset, and just disappointed yet again. The super high power instillation I had been doing has stopped working! After I do them, it takes about 3-5 days to get all the fluids out, and I experience really high pain levels the following few days after the instillation. I was hoping this was something that would help me, but silly me I should have known. Everything that works, only works for awhile. I’m mad, and just don’t know what to do anymore. I need something to work because I can’t keep living my life in bed with a heating pad on. That’s the extent of what my life is right now. I feel like I’ve been robbed. People my age are working, having a family, and going out and enjoying themselves. But here I am in pain and not able to do anything. I’m hoping I’m just going through a flare stage, it’s been going on for 3 weeks. I see the pain doctor on Monday, and I’m hoping he has some new light to shed on this, because something really needs to be done! I just don’t know what to do anymore. My only other option for surgeries is to get the Indiana pouch and get rid of the bag. I’m going to ask for a second opinion on the pain pump and see what happens. I need something to be done, I just….don’t know anymore. Hopefully one of these doctor’s that have such brilliant minds can come up with something. I love my doctors, they’ve helped me through a lot but it’s time to take some drastic action, and come up with some answers so I can enjoy my life, like I’m supposed to.