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Posted

I think I am finally getting things in order which has really driven me nuts. Dr.King whom I saw last week and will be in charge of the radiation treatments suggested I get a feeding tube put in, I have already lost almost 20lbs since my dx on Feb.27, I just can't make myself eat. He said my esophagus will be burnt from the radiation and I will have a very hard time even drinking anything. I saw the Dr. for the PAC placement yesterday and he said if my gastro was willing they could do both at the same time. I have a wonderful gastro that I have been using for over 6 years for the UC and he called first thing this morning and asked if I wanted to get it done tomorrow, he would cancel a surgery for me, isn't that so sweet. I explained I would like if possible to get both the PAC and feeding tube done at the same time, he said no problem they would work it out with Dr.Ordonyne and do it as soon as possible, I go tomorrow to get scanned for my radiation placement and see the oncologist again. I finally feel like something is being done and I am no longer in limbo, best of all this will all be done the week before my baby's wedding and I will be all ready to start treatment the following week. My gastro told me several wonderful stories this morning since he sees a lot of patients with cancer and they were miracle stories, he really made me feel so much better. I know I am so blessed to have such caring Drs. I will admit, only here of course, that I am scared to death. I try so hard to put on a brave front for my son and his fiance and my sweet man and my friends and family. I do call my mom when I have a total meltdown and cry and can't stop. I am not looking forward to any of this but am glad that we are finally getting things lined up and I don't have to see any more new Drs, I just want to get it all over with so I can get better and have my life back again. Thanks once again for listening, I so appreciate it. Gentle Hugs Barbara

Posted

First of all it is ok to be scared and admit it we are all at some point and I am sure some are always. I do not know from experience about feeding tubes. Deb has been through all the treatment optoins before she passed and never had a tube. Wy are they so anxious to reccomend this do you know? There are a lot of options to eating as far as liquid diets go. You can also Juice with a juicer ( Always wanted to do bologna Saw it on tv years ago with Rerun) Just kidding. Deb had 25 treatments of Max Curative rad to LC Chest area and never had Problems eating solids or drinking Fluids. These are my thoughts. You will get more soon. Ask WHY THE TUBE? Saying a prayer keep us informed

Posted

I am so glad that everything is starting to move in the right directio for you now!! I had a feeding tube put in for the same reasons. I was very scared at first but soon realized that it was because I didn't really know what to expect. I hope I can put your mind at ease some. I had lost a large amount of weight and had no appetite prior to treatment. When I started chemo and radiation my appetite decreased even more. I knew that if I didn't get the tube I would not make it throught treatment. I got the tube and did all of my feeding at night. It was not a big deal. It took some time getting used to having a tube there and positiioning myself in a comfortable position when I slept. I knew it was temporary and I had to have it. I was very careful about cleaning and taking care of it. It was not a disqusting thing (like I thought it would be). My nutritionist even commented and said that I could be the poster child for feeding tubes. It always looked really good. That tube made all the difference in the world. I have many tips to help after you get it. I even got to the point that I couldn't take my medicine, so we would crush it and put it in the tube. Good Luck and always remember that your nutritional health is so important in fighting this monster.

I now have a cute little hole where it was.

GOD BLESS!!

Jamie

Posted

I think your doctor is doing the right thing by recommending the feeding tube. If you are already losing weight and have no appetite it is most likely to get worse after treatment. Your body needs the nutrition to heal. My mom did not want the tube, but I think it would have made a big difference in her out come, she just never could get her strength back even when she was able to eat again.

Posted

If you read My post don't get mad at me or anything but that was my experience and thoughts. Deb never needed or had one.

Posted

It is so wonderful when you have positive and supportive doctors. Remain positive yourself. You are in my prayers.

Posted

Thanks so much for your support and answers. I would never get upset with anyone telling how things went for them. I know from all my autoimmune diseases that everyone is different, what works for one person may not work for someone else. It is always good to know info from both angles. All of my Drs. agree about the feeding tube and think it is MUCH better to do it now while I am feeling ok instead of later. My gastro knows my history quite well, I am in remission with the Ulcerative Colitis right now but with all the stress he is very worried I will have another attack and I have a serious case. For about 4 years I could not put on any weight no matter what I did or ate. When the Hashimotos hit that changed and despite having another health problem was able to gain weight, which of course makes you feel better when you are so thin it is not healthy. I continue to have a problem eating anything, I know it may sound nuts but I am very angry with my body and I sort of feel like it does not deserve any nutrition and I am so depressed and scared it is very hard to choke anything down, I continue to lose weight, maybe I put this padding on for a reason. This is a scarey jouney and I don't think anyone has any idea unless they have gone thru it or had a loved one that did. The Drs. did call and the soonest they can do both surgeries at the same time is Thurs the 13th, my son's reception is the next day then the wedding. We are going to have to travel about 70 miles and are staying for two nights at a hotel. I would have to wait another week and half before both their schedules worked out so I am having it done. I refuse to let it cause any problems at the wedding and I am going to enjoy myself then it will be time to get started. I feel better now that I know what is going on and can make my plans and have a tiny bit of control. Thanks once agin for listening to the long ravings of a very scared beginner. Gentle Hugs Barbara

Posted

Prayers and Hugs and well wishes and Congrats!! Phew that was a mouthfull. Glad you have it all sorted out. Saying a prayer as always.

Posted

Hi Barbara, Yes I think your docs are right about trying to keep your energy/weight up starting now. You have wonderful doctors.

This is a scary time. I used to listen to those free Belle Ruth "visualizatin" tapes everynight. And I took Xanex two at a time. :)

Also I began going to a very nice house church with some friends - I guess I'm a born again now. Their prayers over me certainly "hit the spot" when I feel hopeless or in pain. I highly recommend counsel from a paster or church member.

Barbara, I feel so bad for you because we all know what a nightmare it is at first. You are lucky to be so close to your mom and that she is there for you.

May God's love and mercy be with you, Barb

Posted

Hi Barbara,

I too had U. Colitis when I was 19-20yrs old. Lost a lot of weight. Went to Barnes Hospital/Washington University ~~ St. Louis, MO Was put on Lomatil and it basically cured it. Do you have Psoriasis? I was dx'd W/Psoriasis four years later. Everything is clear now. They wanted to put me on Methotrexate I now wonder if all these diseases are related. They are all autoimmune diseases and produce too many cells, now LC. HMMMM... Interesting, what do you think?

Prayers,

Karen

Posted

Hi Barb,

I am so glad you are having this done. It will be a blessing for you to get the nutrition you desparately need.

It sucks that it happens to come out the time of the wedding, but you gotta do what you gotta do.

I am sure with you determination you will be beautiful and that you will have a good time at the wedding. Just being around love ones is good medicine.

Good luck, Sending some prayers your way. I will be thinking of you.

Maryanne :wink:

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