Help Me Please

[KristineJarboe]

Where to start...I went to my gyno last year because I was having lots of YEAST infections. The dr ended going around and about and telling me they think I have IC because of some of my answers to their questions. They did the Potassium Torture test on me. I scream within a min of them putting it in me. They said that I was the worst reacting patient they had in their office. I was in massive pain for about 2 weeks before they decided to do the elmiron instillations on me. Those were HORRIBLE. I have 4 done and was in so much pain. They did a hysterctomy in January to hopefully help the pain. In early Nov. I couldn't stand it anymore. I'm sick and tired of my life running around the bathroom because I go at least every 30 min. I'm taking sleeping pills to help me sleep through the feelings at night. Anyways, I schedule an appt with a highly recommended urilogist.
I had my appt last Monday and he decided to get me into a hydroextension and DMSO immediatly. So Wednesday afternoon, I went under. I had problems waking up from my 30 min procedure. Took me about 1 1/2 hours. (common problem with me) then it took me more than 2 hours to get any pee to come out. When it did it was blood. I go home with med's. On Friday, I can't deal with the fact that I can still not pee. I go to the dr, they cath me and try to get me to wear it home. I say no-they didn't give me good enough reasons (by the way, they emptied 576 ml out of me). Saturday morning, I'm dieing because I haven't gone (I should back up here...them emptying my bladder was WAY more painful then it being full) so I go to the hospital. They cath me and get 700 ml out. They try to get me to wear the cath home but I'm in horrible pain.
Monday comes, I am only able to go to the bathroom a tiny, tiny, bit every 15 min and it's only after I sit in pain because I'm so full. I go to the dr (Oh, I'm also dehydrated because I'm barely drinking anything because it won't come out) and he teaches me out to cath myself. I'm to do this twice a day.
I am now 1 week out from surgery and I can't go to the bathroom on my own. I have not been given a reason...please, someone help me!!
Kristine
28 year old mother of 3 beautiful children that are suffering as much as I am
:confused:

[ICNDonna]

Usually when this happens they will put in a foley catheter and leave it in for a few days until the swelling and inflammation go away. After my first hydrodistention I had a foley for about a week. It actually wasn't horrible. I had the tubing taped to my leg so there wouldn't be any pulling. And when they removed it, I was able to urinate on my own.

You do need to start drinking water.

Donna

[KristineJarboe]

Usually when this happens they will put in a foley catheter and leave it in for a few days until the swelling and inflammation go away. After my first hydrodistention I had a foley for about a week. It actually wasn't horrible. I had the tubing taped to my leg so there wouldn't be any pulling. And when they removed it, I was able to urinate on my own.

You do need to start drinking water.

Donna

I forgot to put some specifics in there. I am on antibiotics because on Saturday they found a few white blood cells but they think it was from surgery but better safe than sorry. The leave in cath was very uncomfortable to me. I have 3 younger children so laying around isn't an option for me and I figured with the uncomfortableness (is that a word haha) I wouldn't want to move. Cathing myself isn't bad and I've learned to breath through the pain. Once they started letting me cath myself, I started drinking ALOT more. On a normal day, I drink 1/2 a bottle of water and 1 pepsi (which my dr said was ok as long as I could deal with the after effects). Even from that, I still pee every 30 min..until the pepsi and then it's about every 10 min for about 2 hours. I drank 60 oz of water on Monday, yesterday I didn't do as well but I believe it was about 45 oz and then today-I've been very uncomfortable but I think I've still drank about 40. Up until today, I was able to release a little about every 45 min - 1 hour and today, nothing. I dribbled (I mean, I'm not even sure it went off of my body until I wiped) about 8 hours after cathing myself.
I do need to ask, did they tell you why? My dr keeps saying that my bladder hasn't "woken" up from surgery yet. My swelling has definatly gone down. I am thin and I looked about 6 months pregnant. I am finally pretty close to my normal size.
Thanks for your reply....I need the end of this battle to come soon!
Kristine

[SrMaggie]

I had to cath myself for a week or so after hydrodistention. Anytime there is a trauma to the body - and surgery is a trauma - it takes awhile for everything to begin functioning again. I went home with a catheter the first time I had the hydro. It relieved me of having to go so often as I was recovering. I would think the blood is normal. Your tissue was stretched and it reacts in a way that relieves itself. Healing doesn't happen overnight. You may need to get someone to come take care of your children so that you can heal. I find that when I fight something, I end up being more tired than I need to be. Sometimes I picture it as being in the ocean with all the waves. If I fight a wave I can get pulled under. If I float with it, I can get to shore, or at least rest in its gentle rocking motion.
IC is no fun. I've had it for 6 years. As one person on these boards says, "I have IC, but it doesn't have me." I've had two hydros, several DSMO, instills, Interstim, trial meds of all kinds. I sleep about 4 hours a night if I take Ambien. If I don't I may be up 20 times a night.
I'm a principal of a school - but if I need to let my body rest, I will close my office door and do something quiet at my desk rather than run around chasing children. Of course, as soon as the door is opened again, it all piles in and hits the fan. But I'm better able to handle it then.
Some days when I was really hurting, I would decide I was going home early. Every time, something came up that only I could take care of, which really set me back, until I could grab some quiet time - or put a heating pad on my stomach while I talk on the phone. I just keep looking for ways to accommodate the disease without disrupting my life.
I think it must be very difficult to take care of small children and be sick. How do you drink your water? A whole glass at a time or do you sip all day?
I find that sipping helps to keep my bladder from screaming at me. I can only hold about a dixie cup full so, no matter what I do, it's going to fill up quickly.
I don't know what to tell you except that your body needs time.

[alianne]

Hi Kristine,

I'm so sorry about your pain. I am also 28 - but I had a hysterectomy before I could have kids because of other problems ... anyway, I have had several hydrodistensions because I thought they helped my frequency - however they can never let me go home that same day because I can never pee and then my bladder goes into intense spasms. It takes at least a week for me to feel any better after a hydro and I doubt that I will have one ever again. Last time I had so much pain from the bladder spasms (they always wait til my bladder is too full to put in a cathater so the pain is way too much - they had to give me so much pain medication that I passed out and had a respiratory arrest - they had to do mouth to mouth because they couldn't find the bag in time. For me the best thing has been a heating pad and a supplement called IC Blend by Vitanica - but I didn't notice help until I had been on it for a month. I also had incredible help with frequency with the interstim - unfortuanetely they had to take it out after only a month because it would not heal properly. I am saying a prayer for you tonight for strength.

ali

[KristineJarboe]

I'm lost. I can't deal with this anymore. I've been cathing myself for a week. My surgery was a week and a half ago. My dr is at a loss as to why I can't urinate. He said he's done this procedure many, many times and has never had this happen (where you don't pick up urinating after being cathed for a short time). He's put me on a drug that is sort of experimental..not sure if that's experimental to me or in general. Don't care as long as it works and so far...nothing. It does have some nasty side effects-can't say he didn't warn me. I did have a positive attitude but that's gone. I have noone to talk to, noone that's been through this. My husband had the gull to say it was in my head. I only wish it were that simple. He didn't mean it the way it sounds but just coming out of his mouth give me the hint of how he feels.
Christmas is 2 weeks away and I have no idea how I'm going to do family Christmas's. I'm not comfortable going to the grocery store and they want me to come over for several hours. I don't want to take this cath with me.
Oh well..
Kristine

[leelee88]

Kristine,
Are you on any meds, I was just wondering , because some meds make it difficult to urinate, I know right before my cysto/hydro the dr put me on pyridium plus and I could not go at all..

[Briza]

I also had severe retention, severe pain, and a week's hospital stay and another week with catheter and foley leg bag. ALso had belly swollen like 6 months pregnant from the retention and pressure from that along with morphine in the hospital contributed to paralyzed bowels...more pain, morphine didn't even touch it. Screamed bloody murder for 24 hrs a day for 9 days straight. Are you having regular bowel movements? Sorry for the personal question but it is important. I had to have my stomach pumped thru my nose to take care of the paralyzed bowels. NOT FUN, especially since they waited 6 days before xraying my abdomen to see what was going on in there. OH, the pain. If you find the catheter and leg back uncomfortable, you can request/demand a nonlatex, pediatric size catheter. It was a real relief to not have to strain to urinate. It was a godsend for me, I could not tolerate adult size, I was so swollen from the retention. Best wishes...stay on top of your drs to get this under control promptly! :grouphug:

[KristineJarboe]

Kristine,
Are you on any meds, I was just wondering , because some meds make it difficult to urinate, I know right before my cysto/hydro the dr put me on pyridium plus and I could not go at all..

I'm on: Vivelle (Hormone patch from hysterectomy), Macrobid and they just put me on Urecholine (which is supposed to make you pee) and so far..nothing.

[KristineJarboe]

I also had severe retention, severe pain, and a week's hospital stay and another week with catheter and foley leg bag. ALso had belly swollen like 6 months pregnant from the retention and pressure from that along with morphine in the hospital contributed to paralyzed bowels...more pain, morphine didn't even touch it. Screamed bloody murder for 24 hrs a day for 9 days straight. Are you having regular bowel movements? Sorry for the personal question but it is important. I had to have my stomach pumped thru my nose to take care of the paralyzed bowels. NOT FUN, especially since they waited 6 days before xraying my abdomen to see what was going on in there. OH, the pain. If you find the catheter and leg back uncomfortable, you can request/demand a nonlatex, pediatric size catheter. It was a real relief to not have to strain to urinate. It was a godsend for me, I could not tolerate adult size, I was so swollen from the retention. Best wishes...stay on top of your drs to get this under control promptly! :grouphug:

My belly has gone down. I'm still alittle swollen but nothing to bad. I'm using a 14 for my cath and I asked if they could give me a smaller one and then stupid me forgot to get it before I left. The medicine they put me on to help me try make me have crazy diarrhea so I know that it's not my bowels. My dr asked me the same thing about going #2 early last week and so I did an enima to make sure and that didn't help. I've never heard of this but I've found that I'm allergic to some crazy things...is it possible that I could have been allergic to something in the DSMO instillations? I'm calling them tomorrow because I've done a ton of internet searching and have lots of questions today.
Thanks,
Kristine

[alianne]

Kristine,

I am so sorry that this is so bad ... hydrodistensions are horrible for me too, even though I have done too many just hoping they might help. I've never had it last so long though, you may need a new urologist if he isn't understanding of your retension. Sometimes I think baths help me with retension problems too.

I know for me there is no way I could get through the pain without a relationship with God. Not to be pushy, just sharing my experience. I'm not a fanatic or "religious" - just a normal person who knows I can't make it without Him. I am saying a prayer for you tonight for relief of this - especially around Christmastime.

Ali:)

[KristineJarboe]

Kristine,

I am so sorry that this is so bad ... hydrodistensions are horrible for me too, even though I have done too many just hoping they might help. I've never had it last so long though, you may need a new urologist if he isn't understanding of your retension. Sometimes I think baths help me with retension problems too.

I know for me there is no way I could get through the pain without a relationship with God. Not to be pushy, just sharing my experience. I'm not a fanatic or "religious" - just a normal person who knows I can't make it without Him. I am saying a prayer for you tonight for relief of this - especially around Christmastime.

Ali:)

I had the Potasium test done as well and that was horrific. The pain was out of this world and they did Elmiron Cocktails after that and they were just as bad. Elmiron never did anything for me and I was on it for months. I've had terrible luck with all of this. My urologist says that my ic is very bad and with having something you can't do anything about..it sucks. My urologist, I think, is good except that he doesn't know what's wrong and really hasn't looked into anything. My husband and I made a huge list of questions and I'm calling and asking them all today.

I'm a religious person and I've been having tons of people praying for me but someone suggested last week that maybe I needed hands laid on me. Maybe I should have them try that. I just wish everything would go away. I'm an emotional wreak and my poor family is suffering as bad as I am.
Thanks,
Kristine

[ICNDonna]

Have you checked the IC diet? You'll find it in the Patient Handbook at http://www.ic-network.com/handbook --- and if I were to drink a Pepsi, I would be in severe pain within the hour. Sodas are bad, bad, bad, for most ICers.

Donna

[alianne]

Hi again Kristine,

I am just sorry that you are suffering so much. Have you ever tried amatriptaline or nortriptaline? These help some people with sleeping and also do help some of the depression I have found. I can't take amatrip because it makes me too tired, but nortriptaline is helping me sleep and just handle the pain some.
I go to a very good church and they are very involved in my life too ... I have had them lay hands on me like it says in James - a long time ago when I was first sick they doctors couldn't find out what it was and it was my gallbladder with a birth defect - the church prayed for me and laid hands on me and the very next day the doctors found the defect and were able to fix it. I have not doubt that I would have died if they didn't find it because I was unable to eat or drink and had lost 20 lbs in a matter of weeks and I have never been big. I have had them pray at other times and God has not chosen to heal me completely. I think the Bible is clear about that God can heal at any time - but that sometimes he choses to help us through the pain rather than make us better. Believe me, I understand how this affects our whole lives .. I have recently dropped out of college, I have to be self-employed because I can't work regular jobs, and the man I love decided that he couldn't handle the fear of me being sick or getting worse so we didn't end up getting married. BUT in the middle of all this, I know that God does love me and He is all that gets me through. I am praying for you today.

ali

[KristineJarboe]

Have you checked the IC diet? You'll find it in the Patient Handbook at http://www.ic-network.com/handbook --- and if I were to drink a Pepsi, I would be in severe pain within the hour. Sodas are bad, bad, bad, for most ICers.

Donna

I take Prelief. I have bottles of it everywhere. It makes the pepsi's not quit so bad plus I never finish it. I do have bad after effects if I don't take the medicine. I follow the diet but probably not as closely has I should. Do you think it might have an effect on what I'm going through now? Right now, the pain is not concerning me..the retention is.
I've been wanting to invest in the IC cookbook. Have you ever tried it?
Kristine

[alianne]

Do try IC Blend by Vitanica ... works much better than anything for every symptom I have, and the IC diet is I think very important or at least finding which foods trigger you. I sure am praying that this retension will stop. Your bladder is odviously hating the hydrodistension and stress on it from that.

ali