I need an education and help with decisions!

jillypooo · Post by **jillypooo** » 2008-05-15 13:15:22

I feel like I need to give you some background, because you will have questions.OK Here I go!! Radiation treatments 34 years ago. Have had "D" since then, but controlled with immodium or lomotil. Also had an obstruction, which I tolerated with help from a neighbor that was a gastro. Finally in 2001, I was admitted to ER with the obstruction and they said, I would die that night, if I did not have surgery. I did and still have Mesothelioma (asbestos exposure)of the pleural and peritoneal at the time and I wanted them to do a chemo wash while they were in there. They called MD Anderson Cancer Center and they did not want me to have it done at that time due to the seriousness of the obstruction. 32 inches removed.two month stay, very ill. Sent home with 104 fever. said it was tumor fever and they could do no more for me.
Next day, was admitted to MDA. Called in my family, because they didn't think I was going to make it. I knew it was not tumor fever and thank god so did my oncologist. He, with the help of God, chose the right antibiotic and I'm still around. Was in there 1 more month.

To give you a very quick glimpse of the problem....I was on 1.5 cc Opium, This use to work! plus4-5 lomotil every 4 hours with the tincture of Opium. And other supplements with this.Now, can you visualize waking up with your eyes so dry, that you can not open them and your mouth is stuck shut and you have to try to produce some saliva, to be able to open them without ripping the skin off your lips. There isn't anything that I haven't tried. I've been to numerous gastros and they keep sending me to other ones.

I've been in crohns and colitis groups. Tried all sorts of diets. Been in bowel management at MDA, etc, etc. The problem is not secretory, but it has taken them 5 years to finally figure this out and understand what I was telling them. At one time, I thought I was going to get Hyperbaric Oxygen treatments, but I had fluid on the lung and they would not take a chance of my lung blowing up!!
I've ordered special cereal only being produced in Sweden. Having it shipped here, costs me over 500 bucks a month. But worth it, if it had worked. It did not. Also tried acupuncture, oils, etc. etc. Also was on Sandostain for a long time. $9,300 a month.Can't think of anything I have missed.

Now for the colonoscopy report. The lower part of the colon has a lot of scar tissue and very thick with it. The gastro said he had never seen anything like it. It was like a steel pipe and did not even move when he pressed on it. Therefore, that is the reason the "s" just falls out of me.There is nothing to hold it in. This is not the sphincter muscle. The more I eat, the more I go to the
bathroom. There is NEVER a formed movement. Only water. Running down my legs into shoes socks,etc. and this is with a diaper at all times. I have no feeling of when it is going to happen.No pain in the gut, just pain where it comes out. WHEW!! Probably have 75 to 100 movements a day. Very little sleep. I use to lay flat to try and hold it in. Now it just shoots out and up my back. Have been sleeping in chair to have pressure to hold it in longer.

I said to the doc, if you can make a woman into a man and a man into a woman, why can't you make me a new @#$%^%. ..no I didn't say that, but I did say why can't you make me a new butt.He said I will tell you why. There is so much scar tissue and it is so thick, that we would have to remove that and then the skin would be so thin, there would be nothing to sew it to and also you have no blood flow to that area. The tissues are destroyed.He said
it will never change and a ostomy is all there is that can be done. He definitely wants me to do it!!

My concern is that the cancer will seed. Meso does this. It is very rare that I have lived this long. I am the longest living person I know with this. Am I stirring things up?? Right now, I don't think I can keep this routine up. I need to get a clear understanding of the procedure and feel good about the outcome. The doctors and surgeons are discussing and thinking about what to do. they are thinking...if it did seed, how long would it take?..............and then what could they do about it...........personally , I don't think these meso doctors at MDA are very experienced. My doctor does not specialize in Meso.I have had him for almost 19 years. He is great. He diagnosed my Meso. He was seeing me for follow ups for two other cancers. In fact two doctors at MDA refused to even treat me after I returned from Sloan Ketterring from lung sugeryl!!! They were sure I would be dead in 3months.My treatment was in Austin TX with a trial with Onconase. (leopard frog eggs)I flew there once a week for four years for an injection. MDA was not even doing any trials and did not believe in surgery, because you were going to die anyway. Now they have trials, but very picky who they take!!And they do surgery now and they have hired doctors to treat Meso.

After reading many postings on this site and finally getting signed in, I have many questions. Also a Kock was mentioned. What determines if you have this or colostomy, or ileostmy? I'm open for any suggestions at this point. After a very bad day yesterday, I know that I must do something, whether it stirs up the cancer or not.

I think this is what we call I'm between a rock and a hard place!

I need to learn more about the Kock,ostomy, placement, tips on how to manage it, etc. Y'all, seem to be educated on this. I need you! I think my day is coming...............waiting to hear from the doctors.

^j^illypooo

Think I'm going to have to add some more OOOOO's to that name

Lynne · Post by **Lynne** » 2008-05-19 07:09:49

Jilly,

You did not mention where you live, but I think the best idea would be for you to speak with a colorectal surgeon who does these surgeries and would know if you are a candidate.

jillypooo · Post by **jillypooo** » 2008-05-19 08:37:12

Lynn, The doctors at MDAnderson Cancer Center are discussing the ostomy with the surgeons. As of today, a week later, I have not heard back, but this is my experience at the institution for the past 19 years. I made several calls over the weekend to each doctor to get on with this. I can't continue with 24 hours of bowel coming out. This is not an exaggeration! My husband plans on calling today to see if he can get them moving on this. The cancer is a problem. It is active, not in recession. It loves to travel and attach to any scar tissue. I have plenty from a hysterectomy and bowel resection in 2001. Fortunately, the bowel resection did not stir the cancer up, so I'm trying to get my mind set, that this would be less invasive and hopefully, I will have the same "luck". I have spoken to the ostomy nurse. The Kock method was never mentioned. I spoke with two nurses that had never heard of it and neither had I. I assume? that you would have a large incision for this and not laproscopy?This would probably not be a good idea for me with the cancer. Now, remember, I am only guessing. I am to go back to the gastro in one month. I'm not going to make it physically that long. I would like to know and understand each procedure so I can make a good decison.Hopefully, I will hear something today or tomorrow from the gastro(MDA) and the oncologist (MDA) Both are very well know in their fields.I am 5'4 and 84 lbs. I have always been small and never weighed over 116.
I live in Kemah, Tx. near Houston.

Thanks!

^j^

Charles_in_Tx · Post by **Charles_in_Tx** » 2008-05-19 12:25:44

Maybe these sites will be of some help:

http://www.uoaa.org/ostomy_info/whatis.shtml

http://www.ostomates.org/ostomies.html

jillypooo · Post by **jillypooo** » 2008-05-19 15:27:45

Good sites. That helped. Talked with someone today with UOAA and she was helpful. Contacted a doctor in CA and he said the Kock was not for me. Waiting for call back from a peritoneal Meso specialist from Maryland. Also waiting to hear from the gastro, I'm going downhill fast.

thanks

^j^

Charles_in_Tx · Post by **Charles_in_Tx** » 2008-05-19 16:21:12

Jilly;
You may want to call the Cleveland Clinic, They are rated one of the top ostomy clinics in the US:

http://cms.clevelandclinic.org/digestivedisease/

What We Treat:
World Leaders in Colorectal Surgery and Gastroenterology

Good luck and be well,
Charles in TX

jillypooo · Post by **jillypooo** » 2008-05-19 16:37:46

Thanks again! I got the number and tomorrow, I'm getting on the phone with some more contacts. My daughter works for SWA and I can fly free, but have not been able to for 3 years due to my problem. I don't know how I could even get to Cleveland. Wish I had known this several years ago.

^j^illypooo

majormom2u · Post by **majormom2u** » 2008-05-19 18:11:54

Hey sweety,

Just want to squeeze myself in here and tell you that I'm thinking of you and wishing you a prompt resolution to your situation. I've been a patient of Cleveland Clinic for almost 10 years and let me tell you... those are the best in the world!... ok.. I'm bias!... but do call and get some advise, if you can't get to them there in Cleveland, at least you may get advise as where else you may go...

Please keep us posted!... good luck.

Sandy

jillypooo · Post by **jillypooo** » 2008-05-20 09:47:51

Sandy,

After reading the Cleveland site, I wish I had known about it years ago. I was shuffled around to all the "experts" in Houston. I am just a novelty for them. I think it is too late for anything but a colostomy,But I would love to get to Cleveland. Don't think I could make it.

Still have not heard back from MDAnderson!! Typical

^j^illypooo

majormom2u · Post by **majormom2u** » 2008-05-20 11:38:19

Honey,

I wish you nothing but the best. My own specialist almost killed me. If it wasn't for the presence of mind of a family friend how had it and my family doctor who told our friend to just take me to Cleveland Clinic. They saved my live there!...

I hope you find success too!

Sandy

texasgal · Post by **texasgal** » 2008-05-20 12:56:25

Hey Jilly I go to MD Anderson to!!! the one in houston is that the one you go to? I heard you mention Austin? I maybe can help you with my GI if you go to MD Anderson in Houston!!! Let me know,Ginger

jillypooo · Post by **jillypooo** » 2008-05-20 13:44:06

I'm seeing Dr. Stroehlein. He was at Baylor, bu now at MDA. He is suppose to be the best! They say. Still waiting to hear from his office.

^j^

texasgal · Post by **texasgal** » 2008-05-21 02:49:44

Is he a GI surgeon? I HIGHLY recommend my GI surgeon he is the BESTEST man at that hell hole,you see I went thru chemo/radiation for cervical cancer and they burned me up BAD.Well the only Dr. who stepped in and took the bull by the horns back in 2006 and has taken care of ALL my medical needs.You see I dont know if you know this or not wherever your primary cancer was/is that is your primary Dr. for the rest of yourMd Anderson life.Mine was cervical so my "primary" Dr. is a gyno; BUT due to the fact all the severe burns I have a GI.urologist,pscyhe,pain management,plastic surgeon,internal medicine but the Dr. who I see the least my gyno is supposed to oversee ALL my appointments when I go thru the ER she is the one who is supposed to decide if I stay or not BUT GUESS WHAT? My GI Dr. has stepped in and fills that role so to speak On Dec.06,2006 I had a 18 hour 10 surgeon team and he was the lead,ever since the only GI involvement was making my colostomy permanant in Aug.2007 This man is a rarity at that place before him I felt like a number he isnt like that at all!!! He created the perfect colostomy,its the nicest that the nurses have ever seen

He has taken care of a massiave blood clot in my leg,cellulitis in my leg,coumadin scheduling,chronic UTI s ( I have a urostomy to),

The point I am trying to make not all Drs there put you at the back burner,I felt that way sooooooo long he has changed my life.He left surgery to convince me to stay when I was admitted once because I had gotten mad at my plastic surgeon,he is the MOST incrediable Dr. and his reputation at that place is VERY GOOD!!!! If you get no where OR dont like the DR. that you have I think you will truly be in awesome hands in him....His name is Dr.Miguel Rodriquez-Bigas and if your interested PM or email me and I will get you his contact information.

If you have any overall questions about that place let me know.We went in there and it is truly so big and overwhemling if you dont know the quirks things will not happen we learned the hard way...Hope this helps,Ginger

jillypooo · Post by **jillypooo** » 2008-05-21 14:10:20

Ginger,

Thanks! Sounds as if you have had the same experiences at MDA as I have. Yes, I know about all the different doctors. I have all of those different ones also. I've been going there 19 years. Scares me to think of having surgery there.The Ostomy nurse told me that there were only three doctors that do the ostomies. And only one that does it laproscopic. I will have to search for that paper with his name, but I don't think it was your doc. I'm having a bad day, so when I get upstairs and find the name, I will let you know. Oh, still have not heard back from anyone at MDA. ....so, what's new with that!!

Thanks!^j^

texasgal · Post by **texasgal** » 2008-05-21 17:50:20

Just curious what ostomy nurse do you usually see up there and just curious what other drs do you see up there? Ginger