Melodie's After Surgery Report

Joe,

Silly me....I really should put aways those glitter toys of mine. But seriously, after taking cranberry extract and vitamin "C" daily, as recommended to me by a visiting nurse, the crystals seem to have mostly disappeared. I did have some problems with irritation, however, and had to cut back on the amount.

In regard to a pouchogram to test for leaking...Pat had asked me about that also and that apparently is not something they do at the University of Washington Medical Center or if they do, they did not schedule me for one. After 3 weeks, I had my last tube removed and a nurse came in and gave me a quick lesson on how to cath. and that was it.

I didn't have any leaking the first week or so of cathing...though I did have lots of mucus and those crystals started showing up. I am moving into week 9 now and can only go 3 to 3.5 hours. And I do have at least one or more episodes of leaking every day. This did not happen to me during the first 10 days of cathing so I don't know why it started in later on. It is all very strange to me. I can sometimes go 3 hours and empty up to 5 or 600 ccs of urine and other times I can only go 2 hours and it will start leaking and I will empty only 200 ccs.

One day I went 3 hours and emptied, went 2 hrs. more and started leaking and so emptied 200 ccs....then 20 minutes later, leaking again and emptied another 200 ccs; this made me wonder if I shouldn't try a different catheter since maybe I am just not getting it all out, although I do everything possible to empty it all. On a follow up visit, a nurse watched me and said I was doing everything right. Of course the hospital would not give me a different catheter when I asked for it so I have contacted a company who is sending me some samples that should be here by tomorrow.

Herman sounds like he is doing well by you. My dear Rose Bud is a beauty or so all the doctors and nurses say so, and I am not finding fault with her....she usually have lots of mucus on and around her when she starts leaking so I think it is her way of making a statement that she doesn't want that yucky stuff on her and I don't blame her for complaining. I just need to find a way to eliminate it from collecting on top of her. Poor dear. One consolation is that when I do leak, it never smells like urine which I think is rather strange....must be the combo of urine with mucus that changes the odor.

I was getting quite depressed because my doctos didn't seem to have an interest in my problem but finally I got an email from one of the surgeons who actually did the operation....the other one is out of country. Anyway, Dr. Wright is a very good listener and I think he will do what he can to help me. I was beginning to feel I had made a mistake by selecting the Indiana Pouch. He told me that he had done a survey on their Indiana Pouch patients a few years back and they were 90% sucessful. I was much encouraged by his response to my note and am feeling much better and will try to be more patient and give myself more time for healing. Thanks for your response. I'm so happy to hear of a recent Indian Pouch person who is doing so well. That also helps me to be hopeful. Take care, Melodie

Melodie didn't they give you the pouchogram. I had to go to the hospital 3 weeks after my surgery to make sure my pouch was not leaking. If it was not then I had to stay in the hospital overnight which I did and they showed me overnight how to Cath myself whoopie lol. As you said in the beginning every 2 hrs and then after a month your up to the 4-5 hr deal. My stoma is Herman after the dude in the show the Munsters remember that show. Man made not the best looking but does his job lol. Just keep irrigating and all that stuff will go away the mucous etc. and the mucous is normal and dear that will be around for awhile b4 that goes away that's just normal off the get go. And these crystals you are talking about I told you not to play with that glitter makeup while you are cathing lol. Joe

Hi all,

I got back to my home in Mt. Vernon, WA, this past Tuesday. Pat had suggested I put my update on as a new subject so here goes....my Tuesday report with some revision.

I am so excited and pleased to be able to get back to a PC and communicate with some of the best folks in the whole wide world. Honestly, I don't know how we warriors would do without this website...cause most of the doctors haven't either the time, motivation, or knowledge to respond to many of our questions. My doctors didn't even know about this website but I will help to educate them.

It's been almost eight weeks since my surgery....I initally stayed at my in-laws home as they were out of town and I could be close to the hospital; Tues. I headed back to my own home 70 miles north of Seattle. The very first ten days upon leaving the hospital my daughter and sister in law took turns staying with me but after that I was on my own, except for having a visiting nurse stop in twice weekly. And everyone was correct...those first ten days or so out of the hospital, you just can't manage on your own...it's just too exhausting. While in the Univ. of WA Medical Center, I have to say, I think I got very good care from the doctors and nurses,and it was very clean, but after I was discharged, it was like I was left on my own...and it was tough to get answers to questions.

The recovery seemed like slow going but I stayed in touch with Pat and Holly and what a blessing to talk with them both for reassurance and answers to questions the doctors never found time to answer. I am forever indebted to these two wonderful individuals for in my darkest hours they were always there for me. Thank you, Pat and Holly ! God bless you for your ongoing kindness to me. And Pat, thanks for providing an update for me on the web during my absence.

And yes, that was a little staple that somehow popped up on the outside perimeter of dear little Rose bud, my stoma. The doc got it out fast and easily once he found the right tool. As for the crystals, whatever they are that I keep seeing...I collected a few in a jar and delivered them to my doc at the UW Medical Center last Tuesday...I did notice that after removing the staple and giving me an antibiotic, that the crystals seemed to disappear but after the antibiotic ran out, they began showing up again. My biggest issue, however, was leaking. The first week I was working with Rosebud, everything went fine, then about three weeks ago, at least once daily I would leak and leak heavily, soaking up a maxi sanitary pad tht I would place over the stoma when I would nap. I was cathing every 90 mins. to 2 hours. Consequently, I was very sleep deprived.

On 9/4, the day after Labor Day I had an appt. at the hospital; my friend didn't show and I had to get a taxi. Went first for the Nuclear Kidney Scan with Lasix....this is a 40 minute test where you have to lie still and they put some radio-active material into your IV, then give you a very potent diaretic...telling you your bladder will feel very full. I was told to go empty prior to the test. During the test, I mentioned that I wasn't suppose to hold more than 500 CCs since it was a brand new bladder and that I was beginning to feel rather full. About five mins. before the test was over, I told the tech. that I was sure the sanitary pad that I had covered my stoma with was soaked and that my bladder was in more discomfort...could we bring the test to an end. She did and I was told to go empty again.

Poor Rosebud! I went to the restroom, pulled off a completely drenched pad, removed my gauze covering and before I could get to the toilet, Rosebud took off like a little geyser...I had never had this happen and so was completely caught off guard. This reminded me of the surprise we sometimes get when changing the diaper of a baby boy. Luckily I had got the cath. lubed up and soon afterwards got the cath. in and able to direct the flow to the toilet. If you have seen the Austin Powers film where he is a spy....there is a toilet scene where he pees for a very long time...I felt exactly like Austin Powers....the flow seemed to go on and on and on...finally the tech. is knocking on the door asking if I am OK. I'm sure my output was over 500. What also surprised me was that none of it looked or smelled like urine...apparently the diaretic causes the kidneys to work overtime and they just pull fluid from the body.

I still had to go get a blood draw. I have never had any problems with that...except this time after leaving the lab I felt something running down my arm. I pull off my white jacket to find blood running down my arm and the inside of my jacket coated with blood. I go back to the lab and get cleaned up, she tries to clean the jacket...finally she gives me one of her jackets to wear home, bless her heart. I returned the jacket when I later went back to drop off my crystals or stones or whatever it is that I had collected.

So back at home with my spouse, I asked if he wanted to watch me cath. myself as he kept insisting that Rosebud was a piece of plastic instead of living tissue (this was his view point from the visit he made to the hospital). I mean really, who should know better than me, what I have for a stoma. Anyway, he wasn't watching long when he said, "I'm not ready for this." Poor Rosebud. I told her to ignore his comments, cause all the nurses and doctors who have seen her always comment on how beautiful a stoma she is. I am very pleased with myself for my early response to her in the hospital. I recall years ago thinking that the idea of a stoma sounded yucky to me but from the first time I viewed her, I decided to love her as best I can and so chose the endearing name of "Rose Bud". As a result, I felt really at ease when it came to catherizing her and it seemed almost a natural task from the start. Now, if I can just help her to get better trained, we will have happier days together.

My spouse is delighted to have me home again, very proud of me and is glad that I chose to try to extend my life. He is now working with me to find improved ways of washing and storing my equipment.

One of my visiting nurses was really concerned with helping me resolve this issue I have with so much mucus and these crystals that clog my catheter and so called me earlier in the week. Anyway, this nurse talked to a ostomy nurse about my situaton, she advised taking 500 mg. of cranberry extract twice daily, and 500 of vitamin "C" four times a day. So I began doing this three days ago and it really seems to be helping me. I have less mucus, not seeing any crystals, and have had no problems with leaking....and best of all, I am now able to go three hours between cathing. This gives me a chance to actually get some REM sleep and it is so wonderful. If I continue to have any problems with the crystals clogging the catheter eye, she advised me to locate and use the french clear catheter that is made of silicone as the crystals nor the mucus would adhere to the eye as it sometimes does with the ones I presently use.

I had hoped to be back at my job, at least part time by Nov. 1st, but it's tough to say at this point. I just keep reminding myself to take one day at a time.
Anyway, gotta go for now. Thanks to all for the positive thoughts and prayers during my absence. Take care and God bless. Melodie