robin,
My mane is Linda, happy to intrduce myself :-)
I eat white food and white bread becuse sometimes food just won't sit and no sooner do I eat do I need to run to the john. if eating white foods or forbidden food from the diet mean I can sleep through the night I can live with it. If eating nuts /seeds and high fiber means I can't leave the house and makes me roll on the floor in pain, not going to eat that EVER!
does your daughter have a GI specialist? if not it might be a good time to find a good one in your area. since she is lookg at using Humera, which I know nothing about, a GI Dr. may not want to go in that direction ezpecially if there are other drugs to try first. Reading on the wellness boards it looks like it is for people that have had difficulty with other drugs. Also concidering there are other opttions covered by insurance.
I am taking Metacapapurine and Pentasa. still working on upping my dose of the 6mp (common name) it is given by weight and I will most likely top out at 100mg. It is covered by my insurance at about $30 a month and Max on the pentasa at 2000mg daily, also covered by insurance and $30 a month.
I know you want your daughter to follow this diet but there is no information anywhere I can find that diet can put you into remission especially after following a diet for a year. I can tell you when I eat food that agravates me that it is not fun. truthfully if diet could put sufferers into remission, it would be much more acceped by people who suffer. I am not saying that it might not be worth a try, but as you might read from your daughter's behavior, it is really hard to jump out on a limb and try new foods especially foods that in the past have caused discomfort.
I feel like I come off as a total *B* and I don't mean it at all. Robin, you mean well and as a parent too, I would do anything for my kids and more than anything to watch them suffer would be awful for me.
Karen, how old is DS and how was his apt. Did you chose an endo over GI for a reason?
I have another intestinal issue, diverticulosis. I have had two surgeries (one an emergency from peritonitis) so now I am where another one would put me permanently on an ostomy bag. I have a great gi doctor and basically his advice regarding diet is common sense, ie lots of fiber and such, but also, don't just discount foods. If you find something causes you pain, toilet issues and such, take it out of your diet and avoid it. I have a friend who absolutely cannot eat strawberries with those teeny seeds, but I haven't ever had an issue. Popcorn is the enemy though and I avoid it at all costs though I have no troubles with nuts. So, my suggestion to the mother is to help your daughter find her own dieting needs by trial an error. Sometimes it is the only way to find out what works and that is even true with losing weight! For those of you who struggle because of the steroids, I can sympathize. I had been put on hormonal drugs and gained about 50 lbs all together and am having a horrible time getting them back off even though I took myself off the drug 3 months ago! Hang in there and wishing you all the very best!
doctor sounded exactly like Dr. Lustig and he hadn't heard of him. DS will be taking the fructose test along with other blood work. HFCS is a big deal and maufactures will soon be disguising it with other more benign sounding names.
Linda, I'm sorry, I'm just seeing your post from several days ago for the first time. I absolutely do not think you're the B word. I greatly appreciate you sharing your experiences and knowledge.
Yes, my daughter does has a GI that she sees regularly. She actually went last night, though I haven't spoken to her about what he said as of yet.
As far as the "breaking the vicious cycle" diet goes, I believe it's something to explore. For the first few months, you are supposed to avoid the legal foods which cause you distress, and add them back in later. Upon mentioning it again to my daughter she's not hearing of it.
We are in no rush for her to start on Humira. I told my daughter I think she should see another doctor and get another opinion.
Karen, I'm sorry, I'm unaware who Dr. Lustig is...
Well, I got the book and read it last night. I think it sounds very hopeful. It makes a lot of sense to me. Oddly enough, so many definite no's on that list are things I don't eat, even though soooo many that adhere to a healthy lifestyle do - such as ZERO grains and ZERO potatoes. Anyway, like I said, I think it sounds very worthwhile to give it a try and though restrictive, do-able.
But my daughter won't hear of it. She will begin taking Humira any day now and I am heartsick over it. I can't get it out of my head and I've been downright miserable over it.
My daughter, my beautiful, ambitious beyond belief daughter, who wowed a crowd of 500 women earlier this week with a knock-em dead speech, who wants a large family, a large career (or two), is heavily involved in volunteer work, is about to start taking heavy duty doses of a heavy duty drug with HEAVY DUTY side affects.
I feel for you too. I would do anything to keep my boys from suffering.
The healing well boards (search the book name) has some people really happy with the diet. it apears that it seems to be like a phase 2 of atkins or SB. seems that what people are really looking for is the 100g or less of the carbs.
DS had a rough Thanksgiving and I got him Breaking the Vicious Cycle, Specific Carbohydrate Diet. It remains to be seen whether he will try it. If he would do a month, then we would know if it would help.
He has already done some of the diet recommendations so it might appeal to his building on something that is successful.
I'm not sure exactly what I have. After I was diagnosed with Fibromyalgia my bowels started getting a lot worse. I've always had IBS like symptoms but the last year has been horrible. Severe bowel pain constantly every day... sometimes I can go and sometimes I cant... the weird part is that i can be constipated and have diarrhea at the same time, but other times it'll just be ... mucus i guess you could say. Then there are times when I am so constipated that I vomit and the only thing that comes up is mucus. I wake up in the middle of the night to just sit on the toilet for up to an hour maybe more. I feel horrible, I cant even eat sometimes for days. Needless to say I've lost more than 30lbs. It was slow at first but the longer the problem persists the faster i lose weight... Sadly I have no medical either so I'm lost on advice... I have taken many medications for my other problems but I don't take anything anymore because my stomach is so temperamental. I have a medical marijuana card and that's the extent of it...
You need to find a GI doctor and most likely a colonoscopy is in your future. The good news is that there are some good meds out there with little to no side effects that can have you feeling better fairly quickly. 3FC
I have never hear do anyone using pot to help with ibd, I can't imagine that the binge side effect is really any good for the gut.
Check out the healing well website. You can post questions there where you will get more people to answer, it is an excellent resource. Yu can search the forums first.
You most likely can go to a clinic for some help. Don't let this go to long and keep posting so we know how you are mending.
I don't really binge from cannabis. I have had a binging problem since I was probably 8 years old... I hardly eat anything now a days. Some days I can eat a decent amount but other I can hardly eat anything because I feel so sick. I don't really know how I'd go about seeing a doctor either because I have no money and no income. The state denied me any help besides food.
Gosh-
I am so sorry, I didnot see you post sooner.
DS had a major flare Thurs night, ended going to the ER, an ordeal in and of itself, no being rigorous about journaling, "write before he bites", preplanned menus a week at a time, tweeking as we go, and using BMR calculators as an inital calorie level he needs to meet. He is 5'11" 116#. As you know, food becomes so painful the eaiest option is to just not eat. Yes, I know BMR calculators are notoriously inaccurate, but it is only a starting point, not an ending destination.
This process is exactly like the one RR would detail for losing weight. This one is being pursued with the hopes of finding long term healing, with weight gain being only one indication.
We have read Breaking the Vicious Cycle, Primal Blueprint, Living Without Bread, and both of Taubes' books, plus numerous articles and interviews. There is no substitute for this education.
3FC
