Tuesday, May 11, 2010

The Last Two Weeks

Sorry we've been so quiet. I've really been having a hard time. About 2 weeks ago a bad flare started and I was heavily bleeding from my bladder. This caused me a lot of increased pain but last week was one of the hardest weeks I've had in a while. For 4 days straight I was completely incontinent. It was so miserable. So of course this meant that I had to cath.

When you have IC you're going to the bathroom every 30 minutes but when you have to catheterize yourself you can't do it that often. This brought on a lot of frustration and pain in itself. I'm used to going to the bathroom and instead I had to wait a few hours in-between each time I cath which caused so much pain and pressure in my bladder. Ouch!

Ok well that's not the worst of it. The worst part of the whole thing was that we ran out of our normal rubber catheters we use so we used these other short plastic ones instead. The first time it worked fine, but the second time something terrible happened. Because I was so swollen this plastic cath decides it wants to latch on to my insides and never let go! Oh my gosh I cannot tell you how badly this hurt. I screamed and cried more than I ever have in my entire life. The way I described it to my husband was as if someone had taken a surgical clamp and clamped it to the inside of my bladder or urethra and then started pulling. It literally would not come off. I guess what had happened was the swelling on the inside had nowhere to go when the catheter was in there so it went into the holes of the catheter tip. I tried to just slowly inch the catheter out but it wouldn't let go of my bladder and plus it made me scream bloody murder so I had no other choice than to yank it out. I did it in a short but fast motion and it finally let go. When I handed the catheter to my husband it was filled with bright red blood. I was already crying because of this stupid plastic catheter that just cut my insides. Needless to say this went on for 2 more days while we were waiting for our supplies to be delivered.

On the 4th day my pharmacy said they do not take our new insurance so Rich went out to the regular pharmacy and just paid cash for some catheters until we could get the correct order in. I was relieved to have the right catheters but still nervous because I felt like I had been tortured over the last few days. I mean I have an open wound inside me and it just kept getting reinjured after every catheter use. The first time I used the rubber catheter after I got cut it felt horrible. Yes, it didn't cut me like the plastic one did but since it was rubber when it touched the wound it irritated it. It felt like someone had poured rubbing alcohol or lemon juice on the wound. I was not happy. Luckily the next day I was finally able to go to the bathroom on my own and I have been able to since.

I'm still in a lot of pain and now trying to recover from last week. I was working on another post about my IC background when all of this happened. So I will be posting that hopefully in the next couple of days. Thank you all for the positivity and support for us and our blog. I know a lot of our readers also suffer from IC and we hope that you know you are not alone in this.


Shannon said...

I have to tell you thank you for sharing your experience. My daughter was diagnosed with IC almost two years ago at the age of 15. We have tried all the different medications with no luck. She is often in pain and has a hard time sleeping. She also has IBS and vulvodynia and probably fibromyalgia. She is managing her IC with diet, but it doesn't completely control it. Sometimes different supplements seem to lead to a flare, so we've tried aloe vera/vit. D and then she'll flare and we'll stop and then try again and she'll be OK for a while. I don't know. It's just such a challenging, difficult illness. She had plans to go away to college but now, because of her IC, is going to stay home and go to a local community college instead. Reading about people who continue to march bravely forward is an inspiration to me and helps me to help her. Thank you for sharing your difficult experience.

life turned upside down said...

I want to thank you for sharing your story. I currently am fighting with the same illness. I have been having trouble being able to go to the bathroom, even though my bladder is burning and the pain is so severe. I thought this was just a normal part of the disease. I sometimes will have to just put going to the bathroom off. I so far have only had to wait about 2 hours before I was then able to get some relief. The bad thing is once that starts it is hard to get the pain under control. I feel for you, no one should have to go through what the people with IC go through on a daily bases.

Shelly said...

Oh hun, I am soooo sorry, I am hoping you feel better soon, of course I know your pain and yet I ache for you!

stringsofme said...

Shannon, I feel for you and your daughter. To have IC that young is just so unfair. I mean it's unfair for any of us. I'm 28 and feel like my life has stopped and can imagine she feels the same way. I too have IBS, vulvadynia, and fibromyalgia. They are caused by our IC and are just another thing we shouldn't have to deal with. Please tell your daughter to stay strong. I'm glad she has you while she's going through this.

Life Turned Upside Down, I'm sorry you have to deal with this terrible disease. I feel for you and your incontinence. The pain it causes it so terrible. You're right no one should have to suffer from IC.

Shelly, thank you I'm feeling better in the sense that I'm going to the bathroom on my own. I'm still trying to recover from the cuts and the pain that has caused me.

Thank you all for the support and let's hope for a cure soon!

Rattler Venom said...

I really appreciated you and your husband setting up this blog, to let others who don't know about IC, know what it's like to live with, and to let those who suffer from IC, how you two are affected by it.
although this is a new blog, I have been reading from the beginning and contemplating creating my own.
The only thing that rubbed me the wrong way as a fellow ICer is the line "I had to wait a few hours in-between each time I cath which caused so much pain and pressure in my bladder you have no idea. Ouch!".
Well, surely, I have an idea, and I'm sure those reading who have a loved one with IC and have watched that person have a flare or self-cath can understand how badly this could hurt.
I'm just letting you know, that if you put your pain on scale above anyone else suffering, you may lose readers. I would love to read a blog about someone else living with IC, but not if that person is going to elevate their pain, suffering, progression of disease, above mine. That makes me believe I am inferior to the one who holds the pen.
With that aside, I would love to hear more and I do love your idea, and I wish you all the best and happy, pain-free days.

stringsofme said...

Rattler Venom, I would in no way think I'm superior to anyone. The "you have no idea" part is a common saying and next time I will pay attention to what I'm saying. I'm sorry that you would think that. I didn't mean to offend anyone and I have deleted that line.

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