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  • update on my other problems

    Posted by rugrat1956 on November 9, 2006 at 11:29 pm

    This isn’t bladder cancer but… Many of you know I’ve been terribly sick since May. I’ve lost 53# and can’t leave the house much unless I am going for tests and drs appointments. Haven’t even been well enough to drive for several months now. In the middle of this they found the bladder cancer and I was lucky enouph to have TaG1 although… 5 cm with an unusually large stalk.

    Anyway Tuesday I had appointments with two specialists. Just thought I’d let you all know what is going on with that. The gyno said I need surgery to take cysts and ovaries out but I am too weak to withstand so we will just ultrasound them for awhile so she can track them. She doesn’t think it is cancer despite familly history of it. :-) Good deal.

    The gastro guy who is supposed to fix my paralyzed stomach says he thinks the underlying problem is a very severe case of nontropical sprue. :-( It is a genetic condition that has suddenly attacked me. My immune system is attacking my small intestine everytime I eat things with gluten in it. For some reason it is very severe in me. I have a cousin who died from a complication of it just last September. She was 17 yrs older than me and was my Godmother! :'(

    Anyway he found that along with the weight loss I’ve lost an inch and a half of my height. My bones have turned to mush. Because of this sprue I have stage 1 kidney failure and this also caused my thyroid hormone to go nuts.

    Interestingly… he found two hernias… one large at the incision from the gall bladder surgery another surgeon did in July and another one a few inches down closer to my belly button where the surgeon put his instuments in. They have to be repaired but again I am too weak to have surgery.

    At this point we don’t know if the damage from the sprue is going to be reversable or stoppable. I feel it is because I’ve stopped losing weight now. So I have a very positive outlook. I am waiting on the antigen tests to comfirm all this so the guy could be wrong, too. If he is wrong then we start over trying to find what is making me so nauseous. He says if this is what it is… I have a difficult diet to follow and he may have to use prednisone and possibly anticancer drugs to get it under control.

    It can lead to intestinal cancer and things like rhuemetoid arthritis as well as other autoimmune diseases. Ugh… I just want to feel better. My Gyno hugged me and the Gasto guy kept putting his hand on my shoulder and patting me so I think they both felt sorry for me. Maybe they felt sorry because my other doctors let it drag on this long. Anyway I hope you all don’t mind me dumping this here… This forum has been a Godsend for me. I don’t even worry about the bladder cancer because you are all so supportive. thank you, elaine… :D


    elaine f.
    dob- 1956
    female- Indiana, USA
    caucasian
    smoked cigarettes- 1975-?
    5cm-noninvasive- low grade- papillary
    TURB- Sept 11,2006
    rugrat1956 replied 17 years, 7 months ago 4 Members · 40 Replies
  • 40 Replies
  • rugrat1956

    Member
    December 2, 2006 at 6:13 pm

    Wife, thanks for the heads up. Should be pretty simple to get checked for that. I was really relieved there was no colon cancer or crohn’s or anything. I don’t know what he is doing biopsies for. A friend told me possibly a type of microscopic colitis, but that is just a guess.

    Greg, as always, thanks for reminding me to be careful with diet. I was a bit irritated after the colonoscopy because the doctor’s only advise was to take more motrin and more reglan. I came home mad and cut my nose off to spite my face and ate some stuffing. Ended up sick in bed for a day and a half. Not going to do that again!! Mr Rugrat went to the store today and got me some more gluten free, fat free, low fiber type stuff. It is in the crock pot now and the blender is on the counter handy. Thank you…. Down to 123 pounds… uggghhh I think, as you’ve said, I have to keep my focus on my diet and keeping my weight up and forget about what the doctor is doing. I’ll just show up with my body when he wants it. ;D I told Mr Rugrat that from now on he is to do all the talking because I can’t seem to get him to hear me.

    Wendy, thanks for the research tips. I didn’t know reglan was used for nausea. I knew it was an anitanxiety drug and my hubby has used it for years to empty out his stomach faster so the acid doesn’t build up and irritate his barrett’s esophagus. So far the neurontin is controlling the bipolar quite well but I did find out after a couple of years sometimes it just stops working. Will cross that bridge when/if it comes.

    You guys are great support and I really appreciate your time and concern. Everybody…..

    December 18 is my bladder recheck and Dr. dugan is going to have a fit that I have gotten so much worse in three months time. Maybe he’ll suggest an Indy doctor!! ;D

    Rosemary, thanks for asking about me… i am doing better today. Will go back and look at the pictures of Kaely and my little Addison. And the hills of the great smokies. Hope your pain is letting up…

    Take care and thank you. I’ll write more when I am on my feet a little more.. I just wanted to check in now. BTW… the garden boy is working out well in the shop. so far… ;D ;D ;D Thanks, elaine


    elaine f.
    dob- 1956
    female- Indiana, USA
    caucasian
    smoked cigarettes- 1975-?
    5cm-noninvasive- low grade- papillary
    TURB- Sept 11,2006
  • mike

    Member
    December 1, 2006 at 11:37 pm

    Hi Ruggy

    Glad the scope had a positive outcome. I only wish they had some reason for your problems.

    Earlier on I mentioned C Diff. Have they done tests to rule out bacterias?

    Here is a link for you to compare symtoms with…..

    http://www.healthtouch.com/bin/EContent_HT/cnoteShowLfts.asp?fname=07123&title=CLOSTRIDIUM+DIFFICILE+&cid=HTHLTH

    Kind of takes the hapiness out of the good news when the problem still lurks.

    Take care.

  • mike

    Member
    December 1, 2006 at 4:36 pm

    Hi,

    Firstly GREAT NEWS.

    Lets ignore all the medico speak – I’ve listened endlessly to Sangommas throwing bones and their hit record for achieving cures seems marginally better than most Doctors!

    The good news is that the gut seems undamaged and undiseased.

    The bile symptoms incline me to think your gall bladder is over active relative to your ingestion. I would hazard a guess that the drug the Doc. has advocated is for little more than a lazy gut, that is passing nutrient through erraticly.

    So what to do.

    Sorry – who suggested egg? Egg can prove a problem for many people – so how do you cook it? Either poach or coddle.

    You need gut filler that is NOT containing glutten and you need to steadily fill your gut again – it is just a pipe line and like any pipe line if it isn’t full it doesn’t work properly the content pools in one place becoming stale and toxic and rushes through other bits failing to have the nutrient extracted.

    I’d give you odds on that the nasea is due to enzymes in the stomach and gut being out of kilter and the bile ducts over producing.

    Back to where I came in!

    YOU MUST eat a small amount of glutten free food every 15 minutes – decide you will give one week of your life to getting better since you have given months to being ill!

    Rigidly and dedicatedly drink 1/4 pint of boiled tap water every hour you are awake, during the course of the day have two OXO cubes disolved in the boiled water whilst hot.

    Stick to bland non irritant food and whatever happens keep putting solid matter into the front end of the pipe every 15 minutes – this will steadily over a week give rise to filling the pipe/gut so that you re-establish digestion and peristalsis as it should be. Steadily build up the food level and then eat twice as much but every 1/2 hour.

    After 2 weeks you will be starting to look as if you can eat meals rather than one long conveyor belt of tedious snacks ;)

    To start with help your gut by putting ALL your food through the blender.

    OK – OK I know it is boring, I know it is tedious and I know it isn’t easy but do you find constantly being unwell, without energy and unwilling to be more than 20 paces from a toilet other than boring, tedious and difficult.

    You CHOOSE – do you want to get better?

    Your Doctors have shown that there is nothing wrong with the colonoscopy so go for it.

    Well done so far. ;)

    Regards,
    Greg L-W.

  • wendy

    Member
    December 1, 2006 at 11:11 am

    Elaine wrote:
    >The dr told me to take more reglan. It is a drug that empties the stomach and intestines out faster. He would not comment on why it helps even at Mr Rugrat’s questions. We just aren’t getting any answers… just more tests. < Reglan is used to combat nausea for people on chemo. I think it's also used for anxiety. >Wendy, I was very interested in your research on antidepressants. I don’t know where you find this info. If you wouldn’t mind would you expound on that. I was on wellbutrin, lithium and zyprexa but stopped taking them when I got sick. I am on neurontin now. You know where to look where I don’t seem to know. ;)< Neurontin...developed for seizures, used for all sorts of things now, including bipolar. Good drug if you can take it, I was given it post-op due to nerve damage pain. It made my eyes cross, I couldn't focus and it didn't help the pain so I didn't stay on it. Plus I had to pay for it as it wasn't approved in Holland yet for nerve pain. I would have been happy to pay but it just didn't help. I go to PubMed/Medline for all my searches: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=pubmed

    Be careful though, you can get seriously lost in cyberspace. Many reports conflict each other and it can drive someone insane. Most of WebCafe was put together using PubMed.

    I hope you feel better Elaine…
    Wendy

  • rugrat1956

    Member
    December 1, 2006 at 9:35 am

    I think the dr was blinded by the light! ;D Ok, The colonoscopy… No signs of major disease! :D But strange things are happening. After the colon cleanse, I got up yesterday morning and, (this gets gross, you may want to stop reading… :-[ ), passed a bunch of green bile looking stuff. The dr photographed pools of this green stuff in my colon and gave us the pictures. No explanation.. he is just doing tests. Is it normal to have that much bile in you after a colon cleanse and no food for a day and a half? I am elated that there was no cancer or crohn’s or anything like that but the fact is I am still very sick and Mr Rugrat is getting insistent that they come to a conclusion soon. I wake every morning sick, nausea.. bad. I start getting watery diarrhea and after a couple of hours of that the nausea goes away. I eat an egg for breakfast and do pretty well for a couple of hours then it all starts over. Wednesday I had diarrhea 10 times between 6am to 5pm. Lots of it. I have a fair amount of pain on my right side where the gall bladder scars are. I have a golf ball size hernia on the top incision. The dr wants to do a barium swallow next week to rule out problems in my small intestine. If that is clear we are down to the gall bladder surgery the first of July. There is a naturally occurring diarrhea you can get after gall bladder surgery called bile salts diarrhea. There is a sickness you can get if the bile duct was injured during the surgery. The dr told me to take more reglan. It is a drug that empties the stomach and intestines out faster. He would not comment on why it helps even at Mr Rugrat’s questions. We just aren’t getting any answers… just more tests.

    Greg, I am always impressed with your research and common sense. I’m not saying that to stroke your ego.. ;D ;D If you have any knowledge you would want to share with me I would be very grateful. The ‘eat often and small’ has helped a bunch.

    Wendy, I was very interested in your research on antidepressants. I don’t know where you find this info. If you wouldn’t mind would you expound on that. I was on wellbutrin, lithium and zyprexa but stopped taking them when I got sick. I am on neurontin now. You know where to look where I don’t seem to know. ;)

    I am not depressed and definitely not willing to give up and live like this if I don’t have to. I am determined to get to the bottom of this. Mentally I am doing quite well. I am happy, I laugh, but I am getting frustrated and angry at being sick with no answers. i guess I have one answer… after all these tests I know I am health! ;D Just sicker than a dog! :-/ All three doctors, the gall bladder surgeon, my gp, (dr of osteopath), and now this gastro guy are all members of the same medical group. Mr Rugrat is thinking maybe I should get out of this group and find someone independent that will be more open as far as findings and possible reasons for this excess bile.

    My cystoscope on my bladder is in 18 days. The trip to Indy will be hard if I don’t get well by then. :( (poor me ;) ) As always I am very grateful to you all for the support through the days of bladder cancer scare and now with your continuing support and wealth of knowledge and investigative power! Thank you for listening. elaine the rugrat… ::)


    elaine f.
    dob- 1956
    female- Indiana, USA
    caucasian
    smoked cigarettes- 1975-?
    5cm-noninvasive- low grade- papillary
    TURB- Sept 11,2006
  • mike

    Member
    November 30, 2006 at 12:28 am

    Hi,

    no sign of Elaine today – you rekon she is starting to run to get away from the man with the big cold telescope. ;)

    Are you sure it was a Tuba – I rekon a Sousa wrapped around to prevent you escaping. Enematic is when you think about it twice – enigmatic is when you give up thinking! ;D

    Are you going into Indy the night before Elaine?

    The amount you eat DON’T YAWN whilst he is doing the scope or he will be blinded by the 40 watt bulb in the surgery ceiling ::)

    Regards,
    Greg L-W.

  • rosemary

    Member
    November 29, 2006 at 10:36 am

    Good luck, Elaine.

    Stay really close to the bathroom during the prep. I had a colonoscopy this summer and I remember telling my Mother that next time, I may invest in Depends. A few times, it was hard to make it all the way into the bathroom.

    Also, just a small word of warning (prorbably the rare exception)…if you have to jump up out of bed (I did) try to realize that the blood rushing to your head could make you pass out.

    Last January I found myself waking up in the bathroom floor with my head banged against the door.

    This last time, I tried to make sure the worst was over before retiring to bed.

    Good luck. The Wife is right. The prep is the worst . The test itself is a piece of cake.

    Glad you’re a little better.

    Ro


    Rosemary
    Age – 55
    T1 G3 – Tumor free 2 yrs 3 months
    Dx January 2006
  • mike

    Member
    November 29, 2006 at 2:48 am

    Telescope? I thought they used a Tuba!!! ;) ;D

    Sounds like things are a little better for you.

    Keep it going! ;)

    I always hear that the prep is worst than the test…….. :-/

  • rugrat1956

    Member
    November 28, 2006 at 12:38 pm

    BIG BRASS TELESCOPE!! :-/ No one told me about that! ;D Still time to cancel…. :-[


    elaine f.
    dob- 1956
    female- Indiana, USA
    caucasian
    smoked cigarettes- 1975-?
    5cm-noninvasive- low grade- papillary
    TURB- Sept 11,2006
  • mike

    Member
    November 28, 2006 at 12:31 pm

    Hi,

    if he is using that big brass telescope make sure he warms it first ;D

    regards,
    Greg L-W.

  • rugrat1956

    Member
    November 28, 2006 at 11:46 am

    Holding my own! Weight has held. Eating small and often…. and puree’d!! ;D But feeling pretty good. Two days until the colonoscopy. Bottoms up, I guess. ;D take care, elaine


    elaine f.
    dob- 1956
    female- Indiana, USA
    caucasian
    smoked cigarettes- 1975-?
    5cm-noninvasive- low grade- papillary
    TURB- Sept 11,2006
  • rugrat1956

    Member
    November 25, 2006 at 10:11 pm

    Greg, in all honesty, I still feel like I am 18 yrs old. Sometimes I think that is a little part of my problem. ;D Someday I’ll grow up but not just yet. I need that illusion of youth to help motivate me to get better. It is easier to deal with health issues if I still believe I have the resiliency of a youngster, I think. ;) However, I try to temper it with the knowledge that I am a little older and need to pace myself. So I plug on. You and the other people on this site have been quite an inspiration to me. I am forever grateful. elaine the rugrat


    elaine f.
    dob- 1956
    female- Indiana, USA
    caucasian
    smoked cigarettes- 1975-?
    5cm-noninvasive- low grade- papillary
    TURB- Sept 11,2006
  • mike

    Member
    November 25, 2006 at 8:10 pm

    If all goes well with that the lad may be around a lot.   ;)  Geezz.  I’m too old for this!  ::)   ;D  
     rugrat

    Hi,

    Please advise when one is too old to feel alive ;)

    I note Jemema who is officially 120 ;) is advocating Kevin Costner on Bubbles’ well hung windows in her new padded cell ;D

    Regards,
    Greg L-W.

  • rugrat1956

    Member
    November 25, 2006 at 7:29 pm

    Mr Rugrat is interviewing one of the boys for a position in his business Tuesday. If all goes well with that the lad may be around a lot. ;) Geezz. I’m too old for this! ::) ;D
    Mrs C, hope all is well with you and Mr C. Keep up the good work. rugrat


    elaine f.
    dob- 1956
    female- Indiana, USA
    caucasian
    smoked cigarettes- 1975-?
    5cm-noninvasive- low grade- papillary
    TURB- Sept 11,2006
  • mike

    Member
    November 25, 2006 at 3:24 pm

    I guess Mr Common Sense Greg gets another gold star on the forehead!!  [smiley=vrolijk_26.gif]

    Hi,

    ONLY if we can keep Elaine on her Rug – not being a rat and scuttling off after the garden boyS or Glutten ;)

    Regards,
    Greg L-W.

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