One patient with glioblastoma still alive nine years later
by Macidoodle on Sat Jan 21, 2012 03:43 AM
by Aoife on Sat Jan 21, 2012 09:17 AM
3 weeks post surgery I was just leaving intensive care. It is very hard just after the surgery as you realise that eating will have to be modified. The good thing is that it does get better over time. I found that tapas/2 starters were great while eating out. I am now at the stage where I can have a large latte and a ciabatta (though having 2 babies might have had something to do with that). Give yourself time, it will take months and years to be able to eat more but it does get better. I did eat a lot of fish paste after the surgery, it is high in protien and worked for me.
by Macidoodle on Sat Jan 21, 2012 01:19 PM
thanks for the response. what are tapas and where do i get them...same with ciabatta? i assume you took regular fish and just squashed it down to make a paste of it?
by Aoife on Sat Jan 21, 2012 03:08 PM
On Jan 21, 2012 1:19 PM Macidoodle wrote: thanks for the response. what are tapas and where do i get them...same with ciabatta? i assume you took regular fish and just squashed it down to make a paste of it?
On Jan 21, 2012 1:19 PM Macidoodle wrote:
Tapas are just smaller portions. It takes a while but if you eat small, high calorie portions it will help. I remember crying over the fact that I was eating spagetti hoops as they were easy on me but it does get better. In terms of fish, you can squash fish or get the tinned stuff. I used to eat a lot of peanut butter as well. I can eat normally at this stage, I just have to eat less. Dumping is something that you may come up against as well.
by davya on Sat Jan 21, 2012 11:34 PM
It takes a while to get appitite back and to eat regular foods. Be patient and hang in there because things do get better. You also want to take precautions for acid reflux. Ask your gastro doc about this.
I ended up with ulcers in my esophagus because of reflux because I never had any symptoms but it was happening just the same. I was eating foods that I should not have been eating.
Soon you'll have an appitite that won't quit!
by crayfish on Sun Jan 22, 2012 02:06 AM
I was wondering about you earlier today so am very happy you wrote.
Yeah - it takes a bit.
Pureed doesn't have to be bland. Mike ate a lot of split pea soup at first. I made it with whole milk - protein, calories and he liked it. You'll find something that works for you. When he started on more regular food he took to Mexican dishes like refried beans with cheese. Hot sauce was his friend. We had a round going on here once and it seems a lot of EC folks do real good with the spicier stuff for some reason. Of course, try a bit - acid might be a concern. I wouldn't try more than a half cup of food at a time at first to avoid dumping. Also, sugar can activate that. Do you understand dumping? I don't have time now but will give you my take if you ask.
Once you try more solid foods you may have some anxiety about eating again and that can hinder swallowing. Try to relax, small bites, chew well. You will get there!
Finally, I know, I know, but don't be in a big hurry to get the J tube out. Use it as long as you can - even after you start eating well.
Keep in touch , ask those questions - Cray
by Joanne54 on Sun Jan 22, 2012 08:35 PM
My husband wasn't even on clear liquids until about 2 months after the surgery, feeding tube only. Jim's doctor recommended the puree, soft foods in small portions adding something different every couple of days, so you would hopefully know what doesn't agree with you. His doctor also said "remember, gravy is your friend". Start with smaller portions of softer veggies, potatoes, meats. Meatloaf with gravy is a good one, just remember SMALL portions. For your other question - yes it does get better with time. Jim now eats everything and anything and they are normal portions! Hang in there, it does get better!
by mccoy70 on Mon Jan 23, 2012 04:45 PM
I had my surgery in July, 2010 and can tell you it will get better. The hardest thing for me was just getting an appetite. I just didn't feel like eating. Part of that problem I think was I couldn't tell when I was hungry. It doesn't feel the same and I couldn't tell if I had stomach problems or was hungry. Swallowing was a different experience, I think some of that was mental, I knew it was different therefore it is...
But, now I eat just about anything only in smaller portions and have maintained a pretty steady weight for a while now. I was 240 when diagnosed in Jan 2010, about 175-180 after surgery and am now right at 200, which is still considered overweight on some of those charts (I'm 5'9").
Bottom line for me to you is, hang in there, it will get better.
by doingfine on Mon Jan 23, 2012 10:36 PM
Great to hear from you. From now on in it is healing, healing, healing. I had my j-tube for 8 months total--2 months before surgery and 6 months was after surgery. Everyone is different. I found out I was lactose intolerant for a while after my surgery. In the beginning I had thickner in my drinks, but by the end of the first month I was doing very well. Poached egg on toast might work for you. Keep them soft. Mashed potatoes - no gravy - no grease. Big thing to remember is that most of the bad effects of the surgery all go away. My doctor gave me a diet to follow in the beginning. No coffee, no bubbly carbonated drinks, no fried foods. About 6 weeks after surgery she said, "Why don't you try a little chili?" I thought she was crazy, but it sure tasted good and stayed down. Spaghetti worked also, but remember very small portions throughout the day. It will get better. Another doctor told me to eat as many high protein soups as possible because protein helps to heal. I would avoid gassy foods too. Ouch, the gas right after surgery is quite unpleasant. Jello, popscicles, etc. Give yourself about 2 - 3 months of going easy. Oh, high sugery foods did not work for me....like cake.
You may experience a lot of mucous. That seems to be a problem with the healing process....lots of coughing and lots of mucous. Stay tuned....the others will give you tips on how they handled those first couple of months.
Best wishes and prayers to you as you recover. Oh, remember to keep yourself elevated at all times....no lying flat.
by cmayes1953 on Thu Jan 26, 2012 11:27 AM
it has been 8 years since my husband had his surgery, an he never ate anything but what he got in his feeding tube for about a month an a half. But when he did get it out the 1st thing he ate was potatoe soup had that a lot, but after that we just started with differant soups baby food applesause, puddings jello. They told him he would more then likely have to eat about 10 small meals a day, but that never happened he didnt eat big meals at 1st but they got bigger as he went along.it was almost a year later that he could eat comfortably. I felt bad for him because I just knew he had to be hungry, and I would try not to cook anything for myself because I no it would have been worse. He weighed 235 lbs befor surgery and had gone down to 165 lbs in that year, but just went to drs the other day and weighed 218lbs . He also had to have his throat streached often in the begining but less often as time went on. it takes time but will get better hope this has helped some. he still has acid reflux real bad at times,so he really needs to watch what he eats befor he goes to bed still sleeps with bed propted up
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