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TOTAL COLECTOMY PART 31

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Posted 1/14/2010 6:47 PM (GMT 0)
I am having a horrible day. I heard form my insurance and they have approved me out of network, but for CC!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! and not Florida!!!!!!! CC did not want to do the K pouch 8 months ago and as you know I have not been having much help or impression from CC these last three visits. They said becuase I have had extensive work up from them I should have to finish there since I started there, but I have had an extensive workup in Florida too I just have not been there!!!!!!!!!!!! They presented my case, reviewed my files and now this Medical Director wants me to go to CC where they said they would rather not do it and it has been 8 months sine we discussed the kpouch at all! It was before my reversal!!!!!!!!!!!!

I feel like crap....I am so sick to my stomach from both the obstruction and this news. I need surgery soon and I cannot wait around for all of his mumble jumble miscommunication. My surgeon is in the office today and is supposed to call me so we can discuss what is going on! I am at a loss right now...in so much pain and so upset.

Hodaya- worried about you....very concerned.

Rosemary- Picc line did not hurt going in, but very tender now. I can still shower, but it was put in in interventional radiology!!! with an ultrasound. Its stitched in.....and very bruised, but nice to have for now.

Marisa- I am at Spectrum Health Blodgett in Grand Rapids, MI

Lizzie

Posted 1/14/2010 8:24 PM (GMT 0)
hi all, Lizzie, oh honey, i can't imagine going through all the difficulties you're going through right now. is there a chance you can appeal the insurance dicision? i hope it's possible to make them change their mind and you tell them you just CAN'T wait too long with this and something has to be done soon! i'm glad the picc line is helping you. is that the only way you're getting food, or are you eating by mouth too? i assume you're not eating much by mouth, so why in the world your abd is getting so big..?? so worried about you! and yeah, i know how hard it is to be in the hosp, it drove me crazy too and i got really impatient and wanted SO bad to get out of there already!! i keep praying for you! Marisa, i can't believe your boss, just can't believe how insensitive some ppl can be!! he sure sounds like a jerk to me! anyone who can't show some sympathy to someone who undewent such a big surgery is obviously plain mean and stupid! you let it out and tell him what's on your mind, girl! hope you're feeling better honey. Jenise, gosh i don't dare eating beans.... i think they could blow me up totally lol. how did your appt with your uro gyn went? has the gas calmed down a bit? Rosemary, congrats on your suit approval!! that's great news! glad you're having a good time, you deserve it! Janie, thanks dear! but i guess i'm gonna still stick to the soft liquid for now, as long as it works for me. just SO scared of laxatives.... Lori, praying for a successful ileostomy for you, my dear, and an end to all of your suffering! actually, it's amazing but today all the pain i had for the past 10 days was totally GONE!!!! i feel so much better. i don't know why it came all of a sudden and again all of a sudden is gone....???? but i'm still scared it'll come back, so i really hope it's really gone. oh and Marisa, no i didn't vomit at all, nor did i have nausea, just HORRIBLE abd pain. i'm just so relieved it's comepletely gone now. my bms are not so great though, but oh well, i think it's b/c i ate some dairy today :/ dairy really constipates me.
Posted 1/14/2010 8:25 PM (GMT 0)
Hi Lizzie,

I feel so bad about what you are going thru! It is ridiculous that your insurance co. is trying to direct you back to CC (Cleveland Clinic, right?) when they haven't been able to help you! I hope your surgeon or one of your other doctors can write a letter recommending you be able to go to the hospital in Florida. I will keep praying for you. Let me know if there is anything else I can do for you.

Do you remember that I asked you before, where in Michigan do you live? Well I see that you are at Blodgett Spectrum Hospital. What a small world it is. I grew up in Grand Rapids and I worked at Blodgett Hospital from ages 15 - 17! I used to deliver trays (food) to the patients in the early evening and then a snack later. I don't know if the hospital has relocated or just been re-named. When I worked there it was in E. Grand Rapids, maybe on Hall St.? Boy, that was a long time ago! I have been living in San Diego since 1986.
I am thinking of you and hoping you get some cooperation from the doctors and ins. co. today!!!!

Gilda

Post Edited (Gilda) : 1/16/2010 6:53:39 PM (GMT-7)

Posted 1/15/2010 12:08 AM (GMT 0)
Lizzie, what is the difference between the k-pouch and the BCIR? Are they the same thing? I hope your doctor can talk to the insurance company and get it worked out so that you can get something done this week or next. So glad they got the PICC line in, that beats getting stuck over and over.

I am doing ok. I have been taking miralax, one dose, in the am and having a bm in the pm. It has not always been perfect, but I have been going more at one time. Makes me think I must have left sided hold up versus all over colonic inertia. What do ya'll think? I will have to increase the miralax over the weekend to be sure I am getting cleaned out, but this has been an ok week....I am not as bloated since I have had pretty good bm's every night. The true test will be in week or two since nothing seems to work for long with me. But, the outlet problem is still there and nothing helps me with that. UGH The outlet problem is my main complaint and I want that fixed somehow. I am going to ask the doctor about a colostomy versus an ileostomy since I heard with a colostomy you can eat more foods and not worry about dehydration. I am going to ask him if I can do a repeat transit marker test WITH miralax and see if I can get rid of the markers that way....then hopefully he will agree to the temporary colostomy???? Just a thought that I have.

My brain is constantly ticking!!!!
Posted 1/15/2010 12:36 AM (GMT 0)
Tracy,

I know that with my colon inertia miralax NEVER worked for me. I took it for months at a time and nothing happened except I would squirt out a little water from time to time. I would still need to take senokot every 4 or 5 days to actually have a bm.

I can't remember, what did your first sitz marker test show?

Lizzie,
It seems like you can't catch a break. I really hope you can get this straightened out with the insurance company. You don't need this aggrevation now.

Hodaya,
I wouldn't worry too much about having to take miralax if you ever get stopped up. Every doctor I've talked to said there's nothing wrong with taking it every day and it's not like a harsh laxative. I know it's better not to take anything, and I agree that I wouldn't as long as you can go without, but if you ever get too uncomfortable try it. It might make a difference in what you're able to eat.
So glad you're feeling better.

Hugs to everyone else!
Janie
Posted 1/15/2010 12:46 AM (GMT 0)
Janie, my sitz marker test showed all markers still in there on the 5th day. 15 were in the ascending colon and 10 were in the transverse colon. My doctor said on day 5, all markers were still on the left side of the colon. So, I definately have colonic inertia, but I was just thinking maybe it is no peristolis on the left side and the rest is normal. Can they test for that?
I already asked my doc if he could remove half of the colon and he said, no it would not work and I would still be constipated! Miralax is a miracle drug for me! I LOVE MIRALAX, but hate the anismus! If I could just sit down and poop I would never even consider surgery for the colonic inertia! I need the anismus fixed!
Posted 1/15/2010 10:42 AM (GMT 0)
hey all, i think what caused my abd pain is citrus. about 2-3 weeks ago i started to drink fresh squeezed orange juice and also ate some pomelo (peeled the thin skin of each slice). it helped with the bms but it also caused the excessive pain. the acidity was killing me with pain and i also felt like i'm exploding with gas. the dr who listened to my abd said "wow you have wild bowels". the pain was on the chest too and ribs and sides. i quit eating or drinking it and feel so much better. do any of you also have trouble eating/drinkin citrus? also, do you all think it's safe to try cooked strawberries? i'm so constipated today so i drank some prune juice. Janie, if i take miralax, does it work right away, or does it take time to build up in your system? i mean is it like prune juice that i can take just whenever i feel constipated and have relief? cause i don't want to take it regulary, just once in a while when i get too constipated.
Posted 1/15/2010 2:07 PM (GMT 0)
Hi All,

Need to know the "standard of care" terminology used on defecograms for loop of SMALL intestine that descends into pouch of douglass rather that loop of sigmoid colon which would be "sigmoidocele."

Anyone who has time, and feels well enough, and has their defecogram report handy by, let me know the terminology your radiologist used to label descending small bowel loops at end of defecogram at maximum push phase.

I am posting the bond to include radiologists in my law suit as the misread of the scan by them was what got me into having my sigmoid colon removed.  But my atty is for some reason lacking the information as to the standard of care terminology for descending bowel loops.  He said none of the radiology reviewers would say (I wonder what is really going on?)

Anyway, I think it is ENTEROCELE INSTEAD OF SIGMOIDOCELE.

Lizzie, thanks for scoop on the PICC LINE, glad it did not hurt going in, hope it stays OK.  Still praying for you.  Was not aware of this new thread. Thanks Rosemary

Posted 1/15/2010 2:08 PM (GMT 0)
Lizzie,

Also sorry to hear you are being directed back to CC and not the CC in Florida. This is WAY called passing the buck! Now your ins co is into the act? LORD, I pray for you. Rosemary
Posted 1/15/2010 2:49 PM (GMT 0)
Lizzie (HUGS) I know you're going through so much right now.. and just know I'm thinking and praying for you!

Rosemary, I have had 3 defecograms within the past 12 months. Did you DRINK the barium? From my understanding - that would be the ONLY possibly way for them to even see the small intestines. ALL 3 of my defecograms - I only had the barium paste inserted into the rectum. 2 of the tests (done at the same facility) only show the rectum.. and nothing else. It totally did not show the sigmoid at all. The other test I had done was at a new facility with new equipment. They had me do a bowel prep and they inserted the past into the rectum too.. but much more of it where it went clearly into the sigmoid part of the colon. I have the photo's from this test - and the only thing that shows in the rectum and sigmoid - nothing else glows so the small intestine does not show at all.

Hodaya, I have had no issues eating anything! Nothing at all bothers me so far... Did you eat/drink citrus prior to surgery? I haven't a clue why it would cause pain, but if that was the reason of 10 days of pain - I'm happy you found it so you can totally avoid it! Regarding Miralax.. I found it did help before surgery - but not that great. It took about 5 days before I saw it working some. I think without your colon - it would work really fast. Regarding constipation, it seems impossible to have it once your large colon is removed, yet many of you gals still have it!?? I just don't understand why.. food is digested in the small intestines and is liquid as it enters the large.. It is there that it is suppose to absorb the water and form the stools. Since you have no large intestines.. it should be liquid when it enters the rectum for you to have a BM.

Tracy.. did you have x-rays each day with the sitz marker study? Maybe you should request another study.... I'm confused about the CI diagnose too. My GI gave me the diagnosis of CI, but the surgeon said no.. yet he said no without asking me my history of constipation. He was basing it only on my advanced issues and problems from my prolapse surgery. My 'extremely' redundant colon is an indication of CI. Looking at my test results this morning.. everyday it indicated an "excessive amount of stool throughout colon" Day 4 - I had 3 markers still in the right colon. Day 5 - 7 were in the transverse and 13 still present in the rectosigmoid colon, and the 3 in the right moved. Day 5 - 20 of the 24 markers were left.. and I was on MiraLax before the test and had at least 2 BM's (maybe 3). THAT SAID... I personally am glad I went the conservative route and did not remove the entire colon. I'm 5 weeks post op, and I have been eating everything without issues! My doctor said I probably will always be prone to constipation, since I have a redundant colon, but the Miralax should keep things moving. Hopefully I will be able to reduce it to once - every other day. I think taking it on a scheduled time helps.

My appointment went well yesterday - just a long day! The dissolvable stitches didn't dissolve and the last few days they were really tight and hurting my bottom. Removing them was painful, but now that they are out - it feels so much better! My doctor wanted me to have another pelvic MRI - for 'learning' purposes and future studies, so he was able to get me in that day, but I had to wait a couple hours. He went through it and explained things and I can see the rectocele is gone, and the whole rectum angle looks so much better. Where the anastamosis is, it looked much narrower.. but things are working good so I guess it isn't anything to worry about - and he wasn't concerned. Also, I have been eating fiber one cereal and adding more fiber to my diet (I tolerate it fine, just have a bit more gas) and I reduced the MiraLax and I had my first formed BM! (who else in the world would I share this with except for you all!!) LOL.. anyway, I know I posted before about my concern of my 'flat' stools.. and my first formed stool was NOT flat! I'm excited about this.. I don't feel I'm perfect, I can feel sometimes the stool doesn't move down for me to go - leaving me with a feeling I need to go - or strain to go.. but if I'm patient, within a couple of hours it moves and I go. I do have to bear down a little - but overall - I feel my surgery is a success - even if I take MiraLax forever! I can only hope and wish that this all continues.. as I know some of you had great success in the beginning and than later on had issues - that still plague you today. It's just all so complicated.. I think doctors really have a hard time figuring things out.
Posted 1/15/2010 3:55 PM (GMT 0)
I got a call from the doctors surgery & procedure scheduler and she said the doctor wants me to have more tests. So, on Jan. 26 at 6:30am I have to go and have these tests...
1) Another anal manometry
2.) Electromyography???? WHAT IS THIS?
3.) Pudendal Nerve Terminal Motor Latency Studies????? HUH? Sounds painful? Is it?
4.) and an Anal Ultrasound??? Never had one of these either.

So, I am a little freaked out, but glad my doctor seems to want to figure out what is wrong with me. Have any of ya'll had these tests?
Posted 1/15/2010 8:13 PM (GMT 0)
Tracy-
1- Anal Manometry- I believe you have had this one

2-Electromyography (EMG) is a technique for evaluating and recording the activation signal of muscles. EMG is performed using an instrument called an electromyograph, to produce a record called an electromyogram. An electromyograph detects the electrical potential generated by muscle cells when these cells are both mechanically active and at rest. The signals can be analyzed in order to detect medical abnormalities or analyze the biomechanics of human or animal movement. Typical repetition rate of muscle unit firing is about 7–20 Hz, depending on the size of the muscle (eye muscles versus seat (gluteal) muscles), previous axonal damage and other factors. Damage to motor units can be expected at ranges between 450 and 780 mV.

3- PURPOSE: Pudendal nerve terminal latency testing will determine if your pudendal nerve is functioning normally, or if there is any delay or deficit. The results will allow your physician to determine whether a pudendal nerve problem is contributing to any of the conditions mentioned above. This information will permit your physician to develop the best treatment plan for you.

PROCEDURE: You will be asked to undress from the waist down, and wear a patient gown with the opening in the back. A technologist trained in performing this exam will be conducting the test, and will explain everything he or she is going to do. You will be asked to lie on a stretcher, turn to your left side, and bend your knees. An electrode pad (similar to an EKG pad) will be placed on your buttock or thigh. The technician will then put on a rubber glove with an electrode on the index finger. After lubricating his index finger, he will gently insert it into your rectum. This should be no more uncomfortable for you than a rectal exam. The technologist will then send a mild, painless electrical stimulus through the electrode on his finger to your pudendal nerve. This stimulation may cause the muscles of your thigh to twitch involuntarily, but it will be painless. The technologist will then gently rotate his finger to repeat the test on the opposite branch of the nerve. A computer will record the response of your pudendal nerve to the stimulation. A physician will interpret the results and determine if any nerve conduction delays exist. The actual procedure will take 15-20 minutes. Please expect to be in the testing area for about 1 hour.

4-

What is Anal Ultrasound?
Ultrasound uses sound waves that are reflected or bounced off different tissues. Due to differences in acoustic properties of these tissues, normal tissue, abnormal tissue & defects in tissue can be seen.

How is this performed?
You will be taken into a room & asked to change into a gown. You may leave all your clothes on the top of your body on. You will be asked to remove the lower portion of clothes on your body. You will be positioned on an exam table. The doctor will assemble the probe by filling the small balloon on the end of the ultrasound probe with water then covering the end of the probe with a balloon. The balloon is latex. However, we do have non-latex balloons available if you are allergic to latex. Please make a healthcare professional aware if you need a non-latex balloon. The probe will be lubricated before insertion into the anus. The examination usually takes 5–10 minutes, but on rare occasions may last up to 20 minutes. Your physician will explain the procedure as it is being performed. A nurse or medical assistant will be in the room throughout the procedure to assist you as needed. The procedure should produce no more discomfort than a traditional rectal exam.ion delays exist. The actual procedure will take 15-20 minutes. Please expect to be in the testing area for about 1 hour.



I am still having the same symptoms and they talked this am about putting another NG back in to help my pain. I am not vomiting, but also have not eaten anything besides a few candies in over a week. I am still on tpn/lipids and still fighting insurance to have this surgery in Florida. My mom has contacted the senator of Michigan who called the CEO of my insurance company and I wrote a detailed email as to everything I have gone though, etc and this was sent to the CEO and to the head of grievances at my insyrance company. They are going to try and expidite the grievance and my surgeon will have to say how imperative it is that I have surgery. I am not sure how to get a hold of him today, but trying all I can for now.I am still currently stable, but as you all know with obstructions there is no telling when this will change.



Miss you all and thinking of you all...



Hodaya- what is going on with you girly??? So concerned about you.



Lizzie
Posted 1/16/2010 12:08 AM (GMT 0)
Lizzie,

Great summary of tests for Tracy.

Tracy, Glad your docs are being thorough.

Jenise, Thanks for scoop on your defecograms.  The radiologists just had me drink water to opacify the small intestine and ultrasound gel to opacify the rectum.  This was not the normal xray defecogram; it was an MRI upright magnet defecogram.  To my knowledge they did not give me enough ultrasound gel rectally to get into the sigmoid.  Therefore what descended HAD to be small intestine.  GOTTA convince my atty of this when I return.  I am allergic to barium so had to have this alternate way of doing defecogram BUT this is what got me inworse trouble than having an allergic reaction to barium.  Just can't win.

Today was super beautiful at Tayana Beach in Honduras.  Like about 80 degrees.  All these natives have totally natural unspoiled bodies, made me envious.  I thought to the day when Lizzie could be on this beach swimming away with her ileostomy bag tucked nicely into her ostomy bathing suit.  I pictured her beautiful on this beach.  Hope that comes to pass.

Hang in there Lizzie, if my case does not make medical history yours sure will.  Your story is even worse than mine.  I cherish those 20 years I had between your age and mine when I fell into trouble.  Take care, honey.  I'm old enough to be your mother.  Your case breaks my heart.  Glad your mom is getting proactive  If your local news paper could only get ahold of your story, maybe some publicity would not hurt and would speed things up with the insurance.  One never knows. 

Rosemary

Posted 1/16/2010 3:21 AM (GMT 0)

Lizzie-I can't believe no one is doing anything for you!!!!! It is CRIMINAL!!!!!!!! I can't tell you how many tests I've had that were negative or normal and once my surgeons opened me up things were so totally opposite on the inside.  I know I've told before how one has said I was a miracle to be alive after I was so sick with all the adhesions and scar tissue; and even now my urologist said my body shouldn't be reacting the way it is according to the tests but it has done the same thing two times and when he has gone inside it shows something completely different. You and your mom need to keep demanding that something be done and soon; if possible, get the press involved then things will get down, hospitals and drs DON'T like negative attention. Always in my prayers my sweet friend.

Going to keep this short cause I've had a horrendous week and can't really write much.  My daughter that lives in Myrtle Beach (Stacy-20 yr. old) got 2nd and 3rd degree burns on her thighs and stomach at work this week by boiling water.  She had surgery on Wed.  to clean & cover the burns and goes back this wed. to see if the skin takes, if not they will use her skin for graphs.  It's been extremely difficult being 12 hours away, have an aunt & uncle with her for now as I can't travel that far with this stent and come back & work without rest and I can't take extra time off due to my situation at work.   PLEASE pray for her pain relief and for the graphs to heal and no infection to set in.I have been having trouble with my shoulder since one of my surgeries this summer, I don't know if they pulled on it or what, but I finally went for a PT eval this week and they think it's frozen because of my issues with building up scar tissue so quickly; well I fell on the ice on our porch this morning and wretched my shoulder.  I was in agonizing pain and it took my husband almost 5 min to help me get up.  Of course I had to to to work because I can't miss any days but I left half day and went to my PT, she worked on it for 2 hours and said it's in spasms and that she would try to get me a quicker appt with the ortho specialist.  I already said NO MORE surgery, just do what you can to get me my range of motion.  So it's going to be an uncomfortable weekend.

Always know that all of you are in my prayers each and EVERY day.  I truly miss talking with you and keeping up with what is happening in your life, I pray that you are all doing well and continually encouraging and supporting each other.  I look forward to the day when I can be on here with you all every day.

Much love and hugs,

Judy

Posted 1/16/2010 4:20 AM (GMT 0)
Lizzie, thanks for the info. I am still nervous that these tests will hurt, but know this is what I need to determine a course of action. I spoke too soon last night...my stomach is horribly bloated today and no bm! I guess I don't go enough with only 1 dose of mralax. I feel completely backed up and I am so pissed! I thought I was doing so well.

Judy, so sorry to hear about your daughter. I hope she doesn't need any additional surgery.
Posted 1/16/2010 4:41 AM (GMT 0)
Tracy, oh my, sounds like you are going to have a fun filled day with all those tests. Do they do them all on the same day? I hated all those tests. Why people would want to that job, I will never know.

Saw that Jen is in the hospital again? Not sure why, just saw it on facebook. It seems like she cant ever win. Thinking of you Jen!

Hodaya, I never eat fruits or veggies. Even a lot of juices especially orange. I learned that after four weeks post op. It caused major pain and puking. So never again. I am just so careful. Maybe a little too careful. I just dont feel well most of the time and I dont want to take the chance on making it worse by eating foods that I am not sure how my gut will respond to it.

I am still taking a lot of phenergan and vicodin. And I can manage if I have my meds. This nausea is just kickin my butt! Does it ever go away completly?

Judy, so sorry about your daughter. Burns are so painful! I burnt my whole arm once on gravy and it hurt soooooooooo bad. They do have a great cream they can prescribe that helps.

Hope you all have a great weekend and Lizzie keep us up to date on any surgery. Love you
Posted 1/16/2010 11:29 AM (GMT 0)
Hey all-

So I finally hear SOME news late last night about 830p from my insurance co. My mom who had called are state senator and they in turn called the CEO of my insurance co. put pressure from the state level on my insurance co and my claim was decided to be expedited as of late last night. This meaning they will have a decision on my appeal Monday evening after a 4 p conference call that includes me. This process normally takes 35 days. Right now I am still appealing to see the surgeon that has indicated I am a candidate for the modified k-pouch in Florida (Dr. Rehnke) and if this is approved then I will head down for surgery there asap. If it is denied, the state is now involved and they have the right to overtuen this decision and if not the medical ddirector of my insurance co has spoke with CC and they are aware of how I feel no one ever had a plan of care for me and have never spoke of surgery. A doctor Huang? was contacted and they have agreed, if my appeal to FL is denied that I will be a trasnfer pt to CC and will see one of two surgeons (Dietz, Kiran) who both perform a modified k-pouch and I will be worked up to see if THEY believe I am a candidate. This is all supposed to happen very quickly as of Monday. Before my mom contacted the state and got them involved the earlies they were talking was Feb 2. As of Monday I will have been here 11 days inpatient (longer than some of my surgeries). I am still grossly distended and getting pain meds every 2 hrs on the hr with zofran and oxycontin as scheduled. I had some vomiting in my mouth last night, but have been lucky to not vomit uncontrollably again and have kept the NG out. I am still just on ice chips and TPN/Lipids through my PICC line. This is all so exhausting and such a continued delay in getting me better.....Monday cannot come fast enough.

Jusy- Sorry about your daughters burns and seeing my mom in action these past few days I cannot imagine you being so far away and having to deal with this....but again, you have your own issues and pain to deal with. I am so sorry and praying for your family. Thank you for you love and prayers....always.

Jen- I know your in hospital again and thinking of you....ALL, she was admitted with a stomach virus she got from her son and has not been able to kick. She went in with severe dehydration again and vomiting. I think she was supposed to go back to work this week, but there is no way and I believe she is still only weighing 106. I am just glad her doctors do keep admitting her and do not leave her at home to fend for herself.

Marisa- So sad you are still having so much nausea and on pain meds still. This does not seem normal to me. I know you are ok with barely eating, but this does not seem normal....love you.

Hodaya- I think something needs to be worked up with you honey. You are heading in my direction...you may not have an obstruction now, but something is wrong and your inability to defecate without severe restriction in food and such again, like Marisa is not normal. I do not feel you both can go on like this forever. I feel so much better getting proper nutrition and like you all have talked about not really eating. I have not had to eat in over a week, but through my IV and it has been such a nice break....so worried about you. Love you.

Rosemary- Oh how I would love to be in the sun enjoying the water....Miss you, but so happy you are on this well deserved vaca!!!

Jenise and Tracy- Thinking of you both....hope your having a wonderful weekend. Love you.

Lizzie

Posted 1/16/2010 5:25 PM (GMT 0)
Lizzie,

GOOD FOR YOU AND YOUR MOM!  She did great contacting the state to contact your insurance CEO.  If anything falls through, then go to the media and I promise you, you will get the ASAP attention that you are now slated for and so deserve.  Hang in there babe you are coming down the home stretch.

So glad for your mom.

Rosemary

Posted 1/16/2010 6:47 PM (GMT 0)
Jenise, i ate and drank citrus prior to surgery. it didn't cause me any trouble then, but now it's definitely not good for me. i tried just a bite this weekend and it caused terrible pain and extreme gas again, so i know it's the reason. i hear what you're saying about how impossible it is for us w/o a colon to have constipation, but..... unfortunately, it's a fact, we do! if i eat bread, pasta, rice, ptatoes etc, even just a little, my stools gets so hard and dry and i can't have a bm. i'm affraid that maybe i have a slow small intestine as well. even when i keep my soft liquid, it's still hard to have a bm. it's also getting harder and harder for me to expel the stool even when it's watery and the evacuation is very little. most of it stays in!! very frustrating and discouraging. i really don't know what's a head of me and how long i'll be able to go on like this. i'm very worried. i'm thinking of ileostomy, but still worried that even that won't work well for me. if i could at least know that with an ileostomy i'll be o.k, it'll be a relief for me that at least there's SOME way out. the most terrifying thing for me is that even with an ileostomy it won't work..... SO glad to hear the rectocele in gone.... YAY!! that's really great! i'm glad you're doing well and i pray you keep doing so. it's really nice to know some of us have success with the surgery. actually, i feel it very clearly that i have both a posterior and anterior rectoceles and i have hopes if these can be fixed, maybe things will improve for me. i need to ask for a defecography already. Tracy, sounds like your dr is being very thorough and that's wonderful! i never had # 2 and # 3 tests... i don't know anything about those.. sorry. good luck honey! Judy, so sorry about your daughter and all that's been going on with you.. i will keep you and your family in my prayers! Marisa, your nausea is concerning and the fact that you still need pain meds.... why..??? where exactly is your pain? this doesn't seem right at all. i don't have nausea at all and don't need pain meds either. you should meet with your dr and discuss these. maybe he can give you something for the nausea..? thanks for responding about the fruits. i also can't eat raw fruits at all, but i sure can eat cooked and peeled fruits. have you tried eating them cooked? i add a sweetner i bought from a health shop, it's called steveya (sp?) and it's really good. cooked peaches and prunes are good for me (peeled of course) but it seems pears are not so great with bms. you may want to give it a try. Lizzie, sounds like you and your mom are fighting the fight and it sounds promising! im glad you're not giving up. i don't think i would have been able to fight like this... the way you are. so proud of you honey! stay strong and never give up! actually Lizzie, sometimes i do wish i could just get my nutrients by iv or something and never have to eat ever again...... i just hate the way eating is making me feel and i'm TIRED of this! i just cry as i type this, cuz i'm really scared of the future. i'm depressed and feel so not motivated to even do anything.. just can't do this anymore. love you all always!
Posted 1/16/2010 7:56 PM (GMT 0)
Hey all, Lizzie thats great news. So glad something is happening for you. How is you hubby handling all of this?

Hodaya, I know the nausea and pain is not normal, but I guess I have accepted it and just live with it. All my pain is on my right side from under my ribs all the way down to my pelvic area. I just saw the doctor and he wasnt concerned about it. So I just watch what I eat and take my meds. I figure if I need to go see the doctor again, my body will let me know. Until then I manage the way I am. I am so used to cooking for my family and not eating what I prepared. Its just become part of my life now. I know how depressing this can be. I get by on faith and that is it. Well that and antidepressants!! LOL!

Hope your having a great time Rosemary on your cruise. I bet the warm weather is great. We are planning a Mexico trip this year and I am so excited. Also going to Vegas in April for a work seminar. But will definetly have to mix in some fun while there. I just hate flying!! I have to take Valium cuz I freak out. I am concidering driving, but it is a 12 hour drive.

Talk to ya all later! Love you all
Posted 1/16/2010 8:24 PM (GMT 0)
Marisa, go for a second opinion. it can never hurt. you shouldn't live with this chronic pain, it's just not right, and taking pain meds forever.... you shouldn't just accept it and live with it. maybe you can get a recomedation for a really good dr from the girls here, even if you have to travel a bit far, it'll be worth it. the girls here have names of some really good drs and i think you should try see one of them, what d'ya say? if your insurance won't cover it, i would even pay out of pocket just for a consultation.
Posted 1/16/2010 8:49 PM (GMT 0)
Hodaya,

I can answer your question would an ileostomy work for you?

I'd say yes.  Last night for dinner I was too tired from side trip to eat real food.  So I had 3 scoops of frozen vanilla yogurt and 6 sugar free chocolate chip cookies.

I got up 4 times to empty a FULL bag.  I was so dehydrated and not peeing at all that I had to take an immodium for diarrhea.  Glad we did not have a side trip today.  The immodium did work, thankfully.

Tomorrow we're in the last central american country before crossing the panama canal and have a trip on a train and a boat.  My Central American geography is terrible.  It's all real pretty and natives are very nice.  It is sooo hot and humid today I'm staying in.  Going to a dance class then for a nap.  Gotta eat real food tonight.  With an ileostomy, barring any adhesion obstruction or anything beyond your control, the big fear is DIARRHEA!!!

Rosemary  PS Keep going Lizzie, you'll get to that beach yet.

Posted 1/16/2010 8:57 PM (GMT 0)
Hi Marissa,

I see that you had your sub-total colectomy in June '09. Mine was done in April '09, so about 3 months ahead of you. I wanted to tell you that I felt pretty "yucky" for 9 months! Just in the last couple of weeks I have started to feel much better - more energy, can eat more normally, can focus well and get things accomplished! I want to encourage you because for so long I felt that the surgery really didn't work for me. The only problem I continue to have now (post-surgery) is chronic diarrhea. At first it seemed like a blessing because for 37 years before the surgery I was constipated! Believe me, though, it is hard to live with the pain and inconvenience of this problem. Still, I do feel healthy; i just have to do some planning before I go out and do things with other people.

Lizzie, I am so glad your mom was able to get some help with the insurance company. I really think that by Monday you will be getting some good news and the help that you need, finally!

Rosemary, I am very glad that you are having fun on your vacation. You have been thru a lot and have helped so many people with their health issues, surgeries, etc.. Keep enjoying yourself. I hope you will post pictures somewhere, so we can all see the wonderful places you went (and you enjoying yourself).

Love to All!
Gilda

Post Edited (Gilda) : 1/16/2010 6:54:42 PM (GMT-7)

Posted 1/16/2010 10:28 PM (GMT 0)
Thanks Gilda.

I would love to post pics from my trip but I have no clue how to.  People have told me and I still don't get it.  I'm technically challenged you might say.

There are some pics of me from my world cruise on the Lahey clinic web site.

Go to lahey.org.

In the very small search box that comes up, type in Rosemary Jablonski.

Up will come an option printed in blue called colorectal dept impact report.

Click on that and scroll all the way down and there I am.

As this donor report becomes older, it may go into archives and need to be searched for a bit, but It was the December 2009 donor report it was in.  If not that, then the Nov, 2009 report.  I lose track of time.  Just had my first dance class.  Rosemary

Posted 1/17/2010 1:35 AM (GMT 0)
NOt feeling well at all tonight......I have horrible horrible pain and ripping in my upper abdomen. They do not think I need another xray, but I think I do. I made a big mistake and had some chocolate (sugar free). I am not supposed to have anything. They just gave me some instant release oxycontin and zofran and pepcid. I hope this starts to help....Moday night cannot come soon enough and I just hope they give me an answer.

Lizzie

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