Venting and looking for help
#162728 - 03/21/05 02:28 PM
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Alisa
Reged: 03/20/05
Posts: 51
Loc: Appleton, Wisconsin
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I am an 18-year-old college student who has been plagued with chronic pain, endometriosis, fibromyalgia, IBS (maybe celiac disease), and severe weight loss. I am scary to look at because I am so thin. I am trying desperately to gain weight, but the foods I can tolerate are so low in calories that weight just isn't coming and staying. I feel so alone and scared of all the health risks of being so underweight. Is there anyone who can give me advice or a word of inspiration? I'm so tired of being told I have an eating disorder by doctors when I don't and my problem is bloating and constipation (which increases after eating anything). Please help!
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Hi Alisa,
So sorry to hear that you've been plagued with all these health problems.  I am a college student too, and know that having IBS alone doesn't mix with school work - let alone all of what you have.
Definitely check out Heather's books. Then start on the basic Breaking the Cycle diet she recommends to get your body stable. Then slowly start increasing some safe foods into your diet.
There are a lot of people on here trying to gain weight and have done so by eating lots of safe breads that are high in calories.
Hope this helps and welcome to the boards!
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- Jennifer
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Try boosting your soluble fiber intake. Eat small amounts often. Constantly be nibbling on something. Bagels, rice, potatoes, white bread are now your new best friend. There are lots of members on this board with a gluten intolerance. I'm sure you'll get some advice with that.
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Formerly HanSolo. IBS, OCD, Bipolar, PTSD times 3.
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I'm assuming you've already read the info on this site and have started (or are planning to start) Heather's diet. If so, you're on the right track! Once you're stable and eating regularly, you'll gain the weight back; just know that it may take a while. For some people, it's hard to lose the weight, for others it's hard to gain it back.
Oh, and please know that you're not alone! I was diagnosed with IBS-D when I was 18 and in college. That first year I went from a healthy 130 pounds to a puny 105 pounds. At 5'6" I was so underweight I couldn't even donate blood. For me, the weight loss took an emotional toll. I had never been so small before, never felt so weak and low in energy. It was as though I were a different person! I didn't recognize my own body! I mean, I hadn't weighed 105 pounds since 6th grade!
Eventually, I went back up to 124 pounds and felt great! Unfortunately, after being stable for a few years, I had some sort of stomach flu or gastroenteritis last fall (which triggered the IBS again) and now I'm back down to 108 pounds. But I'm doing better and I have gained three pounds since October. I'm just following this diet, lifting free weights to get the muscle back, and taking care of myself the best I can. I also try not to focus too much on what the scale says, but more on how I feel. Here's a link about gaining weight on the IBS diet.
I'm sorry you're suffering from other health conditions as well. If your doctors are not going to listen to you and they want to assume you have an eating disorder, I say, "Get new doctors!"
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Thank you so much for your reply, Maria. I have looked at this website and have followed a similar diet for the past four years. Knowing you have gone through similar problems to mine makes me feel better! I am almost five feet tall (a little under), and weigh in the 80's. I know - it's awful. I was around 100 pounds two years ago and then lost the weight quickly due to increased pain after eating. My weight has fluctuated back to 90 lbs, and now after a stressful term at school, I'm back down in the 80's. I'm starting to eat as much as possible at every possible time of day (and night), so hopefully that will start helping. I am in search of a doctor who will understand my situation, and I have an appointment with my primary care physician on Wednesday. I hope it goes well! I hope you are feeling alright...
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Thank you for your reply, Hansolo! I am so thankful to have advice and support from fellow IBS sufferers. I have an appointment with my primary care physician Wednesday, so we'll see how that goes...
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Hi Jennifer! Thank you for your reply. It's nice to hear from another college student! What have you done to help your IBS at school and manage stress? I'm so glad to be a part of the boards now!
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Quote:
Hi Jennifer! Thank you for your reply. It's nice to hear from another college student! What have you done to help your IBS at school and manage stress? I'm so glad to be a part of the boards now!
I actually just started taking a once a week yoga class, which has helped my IBS tremendously. Also, I make sure to watch what I eat and take a precautionary anti-spasmic pill that my doctor prescribed to me if I have a test (Levsin is the name of it), which comforts my stomach and my mind.
At the beginning of the year, if my class syllabus says that attendence is mandatory, I will sometimes talk to my teacher and inform them that I have a cronic medical condition that sometimes forces me to miss class sometimes. I am not required to tell them what the condition is as it is none of their business! But I also make sure to let them know that I am pretty good at managing it so I don't anticipate to be out of class more than once or twice. So far, all of my teachers have been very cool about it as long as I keep up with my school work.
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- Jennifer
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Hi there, and welcome to the boards.
I'm also in college, and you should know that a lot of the profs are pretty understanding if you need to miss a class, a day, or even two days (as I once did) if you're not feeling well because of the IBS.
Another thing you should do if you get a chance is to talk to your Student Disability office, or whatever the equivalent is. If you in fact get a medical diagnosis for IBS, you can qualify for test accomodations, such as extended time to compensate for time spent in the bathroom, alternate locations, and more.
I reccommend going to this thread. It's all info from college people about how their experiences with IBS.
Hope your doctor appointment goes well.
Avidan
PS: Where are you in school?
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Why'd you have to go and make me so constipated?
--'Weird' Al Yankovic, "A Complicated Song"
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Hi Jennifer. I also make sure my teachers are aware of what I'm going through. It sure is frustrating to not be considered "normal" like the other students. I'm feeling a little better today than yesterday, so I'm thankful for that. I cherish every day that's better for me in terms of my IBS!
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Hi Avidan!
Thanks so much for your message. It's SOOO nice to know there are others out there who know what I'm going through by experiencing such IBS problems as well. I am at Lawrence University in Appleton, Wisconsin. The food services have been accomodating by making me special meals according to my dietary needs (although the quality isn't super...but I'll take what I can get!), and my teachers have been very understanding. Both of my parents teach at the University, so that helps as well. I am a voice performance major, so my voice teacher has been a huge mentor and source of support for me and my health. I've studied with her for nearly nine years now, and she has been with me through my health problems and how it affects my performing. Thank you also for sending me the link to the thread. I did find it helpful. I hope you are doing well. Isn't IBS with constipation absolutely HORRIBLE?! My empathy is with you - I know how frustrating this can be. I'm so thankful to be a part of the boards on this site now, though!
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In addition to the PCP visit question, I was wondering if you've tried using those new disposable heat pads? I use Playtex Heat Therapy pads during my period (sticks to your underwear and works SO MUCH BETTER than 4 ibuprofen pills), but I also find them EXTREMELY helpful when I'm having any kind of abdominal cramping. Therma Care is another brand, but the Playtex ones are cheaper and one heating pad lasts 12 hours.  Maybe these would help alleviate some of the pain you're experiencing.
Hope you're doing well this week! 
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Helped me through many a bad day at work!
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Getting the celiac or gluten intolerance thing worked out will make a BIG difference. You don't want to be eating foods that hurt you b/c of that and nor do you want to be eating gluten-free if you don't have to!
Medicinenet has some great info on celiac...see here . In particular, here's the page on testing for celiac.
Good luck with your doctor!
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I actually do use ThermaCare heat wraps all the time! I LOVE THEM!! My doctor appointment went well, but nothing really came of it. I'm in contact with doctors at MAYO clinic and UNC about possible treatment with Naltrexone and pelvic floor re-training. I'll be contacting a doctor at UNC by email tonight. Hopefully, this doctor will be able to help me. I just get so frustrated with doctors who just let me do all the research and experimentation without following up on me or helping me. It causes tremendous stress on my family and me. I hope you're feeling better today - have a great weekend!
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Hello - I am a senior college student, also suffering from IBS. I was diagnosed was I was 10, but it really started to get bad my freshman year of college. Over the past four years I have discovered many methods to help me get through the rough periods. Talking to your professors is definitely a great idea. Whenever I have to give a presentation I always talk to the teacher about my situation and it decreases my anxiety by ten fold. They are usually very understanding.
I would say the biggest help will be to closely monitor your diet. It's extremely hard to eat well in college when everyone always wants to order pizza and drink beer. My friends often think that I'm weird b/c I follow such a strict diet, but eventually they get used to it!
Good luck
ps - Avidan, I go to school right next store to you at Drexel!
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Alisa,
Welcome to the boards!
I have a question for you...if you don't mind? I was a voice major and am contemplating doing some projects with my voice. And I find when things go awry with my body...my singing/acting is affected.
Can I ask what happens to you?
I find my throat hurts from fibro or whatever is ailing me (we're still unsure of that diagnosis...). I also find bloating makes it hard for me to brathe and it effects deep breathing one uses for optimal vocals. Does this sound familiar?
I'm sooooo sorry you are going through all of this in colleg. Things got bad for me within my 1st few months of marriage and have goten worse since (however...I have started feeling better....).
Feel fee to e-mail me if you like Ruchily@yahoo.com
I hope you are feeling MUCH better and that you get to the bottom of all of this soon. Check out the IBS Fitness Board for ideas on gaining weight as well. You're NOT alone *big hugs*
With love, Ruchie
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Formerly known as Ruchie
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You've come to the right place. This site is full of people with great advice.
I have (had) the same problem. I couldn't tolerate food. I was so scrawny that I looked like a skeleten. Well actually I looked like a pregnant skeleten becuase my belly was always bloated from the IBS.
I was also afraid to eat becuase I never knew what would set me off.
But now that I've been follwing Heather's diet I found that I have been able to put on a little weight (not much but I'm not withering away anymore). 
Alisa it doesn't happen over night. Start with the "What to eat When you can't eat anything" foods and work your way up. Don't worry. You'll get there. 
Also it's important to discuss with your doctor what you are doing so he/she can moniter your progress and give you advice and help when you need it. IF you have a good doctor he/she will be encouraging and helpful.
Just take it one day at a time and consider each food that you swallow to be a victory.
Visit this sight often and keep asking questions. One thing I doscovered since I started visiting this site is that there is No Such Thing as a stupid or embarressing question. We are all in the same boat.
Lots of Luck.
Chany
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You go to Drexel?!? So do I!
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Melissa
Friendship is thicker than blood. ~Rent
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Hi Chany,
THANK YOU so much for your post! I appreciate your support so very much. I, too, look like a pregnant skeleton. I had to use phosphosoda last night to clean me out since I was so backed up and in so much pain. Life is so hard with IBS-C and my constant pain, but I'm a very positive person and rely on my faith to get me through things like this. What else have you tried besides diet to help with your IBS-C? What supplements have you tried and liked? I need help to keep my bowels moving normally and consistently!
-Alisa
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Hi Ruthie!
Thank you so much for your post. I am so thankful to find another singer with similar problems to mine! The bloating makes it hard to breathe and support my voice, but my throat doesn't seem affected by fibro (just hormones - my hormones are in a cycle, but the rest of my body is not due to my severe weight loss). The bloating and pain is what causes the most problems for me in terms of singing, but I find that singing is therapeutic for me and helps my pain lessen sometimes. Does that happen to you as well, or is singing impossible when you're feeling ill?
I'm not feeling very well lately, and I had to use phosphosoda last night to get cleaned out again due to being backed up and in so much pain. It's so frustrating! I'm sorry to hear you have had a tough time of it, too, but what regiments are you on to try to regulate your IBS-C?
Your message brightened my day! I hope you're feeling better today...
-Alisa
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I take fibercon every morning with an 8 oz glass of water. Also I take a probiotic at night. I'm not sure if that helps much or not, but probiotics are good to take if you have IBS.
When you have time to read all the sections of this web site you may find other things that work for you. Check out the Cheat Sheet. I keep it posted on my fridge so that I can reffer to it when I am hungry.
Hope this helps. Feel good.
Chany
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Hi Alisa!
I'm sooooo relieved that it is not in my head! The bloating just takes away from performance (and quality of life if ya ask me!) My throat has been so soar of late from fibro that I have scratched the idea of doing children's educational music. But I believe this will not be a forever thing and I look forward to the day I can get back on track with the greatest therapy I've found yet!
I LOVE to sing! Have taken lessons, the whole bit! What do you enjoy singing? I have always loved showtunes and country and such. Now I am a religious Jew and I enjoy singing for women and performing for women as well (my last performance was 2 years ago...we raised enough money for the oldest daughter of ten children to have a wedding in a hall instead of at home in Israel!)
I'm so glad you can sing when you don't feel well...how wonderful for you! It can make the whole world different when you can sing.
You're message brightened my day soooo much! i have always wanted to ask someone if being bloated effects their quality of voice. May I ask what other symptoms you get?
I try to eat right. I mosly follow Heather's diet...but I find I need a LOT more fruits and veggies to get my bowels moving. Small meals are crucial for me. I eat a lot of pureed veggie soups. Yo may want to try charcoal for gas (but not on a long term basis) if the teas and SFS don't do the trick. You can also try bromelain as a digestive enzyme and see if that helps.
What do you eat regularly? Have you done a food journal? What GI tests have you had?
Have you given Heather's diet a try?
i really hope you begin to feel better soon.....and that you can get off the phosphosoda. *hugs* Take care!
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Formerly known as Ruchie
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Hi Chany,
I've tried so many SFS, but I only tried Acacia for three days before noticing increased bloating and pain. I'm going to cut back my dose and try it again. I also take probiotics, marshmallow root, and a product called CleanseMore by Renew Life. I'm afraid that if I stop any of them, I'll have more C, which has happened in the past. It's a lot of trial and error. Thanks for your suggestions!
-Alisa
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Hi there!
I have tried charcoal but not bromelain. What is that exactly? I get such horrible gas, gas pains, bloating (I look pregnant almost all the time), and I have to eat small meals as well. I have to eat little bits throughout the day, otherwise I'm miserable. I have followed Heather's diet and avoid wheat/gluten, refined sugar, dairy (except I eat eggs), and most fats (canola oil and flaxseed are my main sources of fats). I live on lean meats (not red meat), fruits like berries, veggies like squash, green beans, peas, carrots, salads, and corn, and rice. It's very restricting, but it's better than if I eat whatever I want. I make my own baked goods out of gluten-free flours and honey, and I make my own soy ice milk. What do you usually eat? I usually stick to egg whites or eggs, flaxseed, the fruits and veggies I mentioned, the ice milk, homemade muffins or scones, rice cakes with jam, rice cereals, the meats I mentioned (I'm a huge protein person...I love my meat!), and rice noodles. I do keep a food journal as well as a calorie count so I can make sure I keep gaining weight. I do pilates and stretching for my fibromyalgia and IBS, and both do wonders for me.
My main symptoms are the contstant pain and bloating, both of which increase significantly after eating, and I get horrible acid reflux after eating anything. I take ranitidine for that. This affects all aspects of my life and my singing as well. I sing opera, actually, and have studied voice for almost nine years now. I hope to one day become a professional opera singer and sing abroad as well. We'll see what happens! I'm so glad you are able to use your singing to benefit others and for fun for yourself! That's wonderful! My singing is something that brings me such joy and gets my mind off of my IBS.
I've had three endoscopies, four colonoscopies, a laparoscopy for my endometriosis, a chest tube put in for when the doctors collapsed my lung from putting in a central IV line in my chest from being so dehydrated (I had to have a feeding tube as well...my IBS pain got so bad I couldn't eat at all. It was an absolute nightmare), and I've had the barium swallows/radioactive egg tests done, too. No obstructions were found, of course, but the pain is always there. It's so confusing!
Well, I have to go, but I thank you for your message - it's wonderful to write to you! I hope you're feeling better, too.
-Alisa
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CleanseMore
#166674 - 04/03/05 07:17 PM
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Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
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Alisa, I went to buy some CleanseMore yesterday and the bottle says it is NOT for prolonged usage. Please be cautious with this one.
It contains lots of Aloe with is a harsh laxative for us IBSers. It is not recommended at all!
Like I said, even the company states that this product is for "occasional" constipation and only be used short term. I know you feel it is helping, sweetie, but I am concerned that you are taking something that can cause permanent harm to your GI system.
I take two of the products listed in the ingredients, but these are both safe. Slippery Elm and Triphala. You could do both of these separately without consuming the horrible aloe. Both are safe for continual use. I think your marshmallow is basically the same as the slippery elm.
Just me worrying about you! 
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Hi!
Small world What year/major are you?
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Alisa I don't have alot of advice- but I can appreciate where you are coming from. It is scary being so thin as you worry about nutrients etc... I get bloating no matter what I eat also. You definately aren't alone on this board! Hang in there.
Melissa Feel better soon.
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Melissa
Pain predominant w/occasional C.
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You poor soul.Try eating Heather's diet with no gluten at all.It has really worked for me as long as I also take Oxy-Powder for C.Nothing else works for that with me.I used to have terrible bloating.I have Celiac and IBS-C so I really understand how awful it is.
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fourth out of five years, biomedical and electrical engineering
How about you?
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Melissa
Friendship is thicker than blood. ~Rent
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Hi Alisa
I am Alot like you. I'm 20 and have been suffering from IBS for about 10 months now. Mine began as a reaction to H.Pylori and the 14 day antibiotic treatment. I have been thin all my life, but prior to the infection I was 5'6 126 pounds..I loved my size. The IBS hit. My lowest weight has been 104 pounds. Prior to discovering the diet and that I was agrrevating my IBS by eating fast food I was having attacks 3 times a week and overeating at meals. People thought I had an eating disorder because I would be in the bathroom after meals. (I have a IBS-A)
I have to say that I have seen improvement under Heathers Diet. I have cut out milk, cheese doesn't bother me in small amounts. I have limited my cereal to those recommended, and Oatmeal. For me Oatmeal has been a very safe food, whenever I feel stomach problems coming, Oatmeal calms me down. I still deal with Nausea, but I am slowly gaining weight, I was 109 at my last doctors visit and I have limited attacks to once in 14 days.My ideal is at least 118 and IBS attacks to less than once every three weeks.
Alisa trust me things will look up. I have p ut my trust in god that I will be able to lead a normal life and I am seeing it slowly but surely. I was soo depressed because of it and wanted to commit suicide, but ... God prevailed. This site has been alot of help...Your in good hands
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Keep Smiling
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I'm also in my 4th out of 5 year, in the business school. I have quite a few friends that are biomed engineering (I can't imagine how you can handle that AND electrical!). It sounds like you were diagnosed pretty recently, have you found it difficult to adjust to college life? I was diagnosed when I was little, but it was a really difficult time for me especially my freshman year (I'm sure you know how those freshman dorms are, the bathrooms are terrible!). Do you take any meds yet? I am always curious to see what others are taking, I have been on Levsin for the last 6 or 7 years.
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I was diagnosed my sophomore year of college, but I've had IBS since my senior year of high school. Luckily I lived in a suite my freshmen year, instead of the normal dorms, but with the dining hall and not really knowing anything about diet (other than I wasn't eating meat or anything whole wheat), things were pretty bad for me my freshmen year as well. No meds for me, the docs can't find one that either (a) works or (b) I don't have nasty side effects to. But I'm much better now, I follow Heather's diet and my big thing is making sure I get enough sleep.
If you want, my email's in my profile, feel free to drop me an email!
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Melissa
Friendship is thicker than blood. ~Rent
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Re: CleanseMore
#167287 - 04/05/05 01:21 PM
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Alisa
Reged: 03/20/05
Posts: 51
Loc: Appleton, Wisconsin
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Hi Beth,
Thank you for your concern! I hadn't noticed that warning. I'll definitely stop that. I started Acacia again at 1/4 tsp at night, and it seems to be working along with the flaxseed! I'm hoping I'll be able to stay regular with that...cross your fingers!
How are you feeling?
-Alisa
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Thanks, Melissa. I'm feeling better lately, thank goodness. I'm trying Acacia at 1/4 tsp every night now, and I think it's helping my regularity along with flaxseed. I'm hoping for the best!
I hope you feel better as well,
Alisa
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Thank you for your encouragement! I rely on my faith in God as well to get me through rough times (which are everyday for me). I don't get IBS episodes...they're CONSTANT for me. I'm always in pain and always thinking about how food will affect my bloating and constipation. It's horrible. It's so hard to gain weight when the only foods I can eat without pain are so low in calories. I'm trying my best, though, and my parents have been wonderful sources of support. My entire family is wonderful about that. My doctors aren't. I'm in contact with a doctor at MAYO clinic and UNC about possibly trying Naltrexone, but I won't be able to get the drug until I see the doctor at UNC (even then, maybe I won't be able to try it since it's being tested now) this summer. Right now, things are looking up. I've tried adding back in Acacia SFS at 1/4 tsp every night plus flaxseed. So far, I've been regular!!! Yay!!! I'm keeping my fingers crossed that it stays that way! I never thought I'd pray for bowel movements!!! =)
How are you doing? Are you feeling any better? How did you gain some of your weight back?
I hope you're feeling better, and God bless,
Alisa
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Hi! I am a freshman and a vocal performance major. What about you?
Thanks for writing! I hope you are having a "feel good" day!
-Alisa
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Hi! I am a vocal performance major and a freshman. I might be getting a double-degree in either Italian or Theater...but we'll see. I wish I was more scientifically inclined, but I seem to do better with music!
-Alisa
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You're story is like mine. I always react to medications or foods negatively sometime or another. It's so frustrating. Diet helps a lot as well as getting enough sleep! I am always thinking about how my schedule affects my IBS and I make sure to sleep enough. Otherwise, I'm a total basket case!
-Alisa
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Hi Linda,
I am on Heather's diet as well as a gluten/wheat-free diet, plus no dairy (I eat eggs, though), and no refined sugar. It's horribly restrictive, but better than not being able to function. What kinds of foods do you eat primarily?
I hope you are having a "feel good" day - those are so precious!
-Alisa
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I am soo sorry about that Alisa. Are we the youngest ones on here? At first it seemed like I was always having problems, If not daily it was every other day. I am glad the Acacia is working for you though. Shame on those doctors. its weird because when I first started having problems I came to a doctor here who performed my endoscopy and her said he thought I had IBS, put me on Donnatol, and when it dind't work, he told me I must be making stuff up and Now that I know about IBS I know that the medication was not even the type I should have been on. Maybe thats why its so hard to deal with doctors,because they think they know everything LOL.
I am doing better though Alisa, I have been bloated for the past two mornings but I am okay.I founf that Vietnamese food is good for me becasue itts prepared in such a low fat manner.I do Yoga occasionally, sometimes it helps, and sometimes it makes my body feel like I am going to have an attack.
Have you tried changing your diet yet? You might want to try that before getting on any meds becasue you dont want to be dependant on meds. I was dependant that my doctor was going to give me something to make me feel better, and I'd be disappointed when it didn't work, but I was eating stuff that didn't agree with my system. I am about to try some digestive enzymes he recommended. To gain my weight....I ate even when I felt sick or nauseated but I would eat something that doesn't bother me.. Like Oatmeal and Toast. When you feel good or if, take advantage, dont over do it, but eat a meal, then a snack. My fav snack right now is peanut butter and crackers. On the days I feel good I eat cereal or peanut butter sandwiches between meals.I eat oatmeal or cereal in the morning and a bannana maybe 2 hours later, then lunch 1 1/2 to 2 hours later(which is usually my most Risky meal of the day since I know I'll be active afterwards) about 2 hours later I eat a snack..Banana Nut muffin or crackers about 3 hours later dinner and sometimes 2 hours after dinner I eat a snack. Thats how I have been doing it, people still say I am tiny, but I can tell the difference in how I feel.Definately keep me posted on your days and your progressions. IBS is a weird thing to deal with, but trust me it can be dealt with.
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Keep Smiling
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Thank you so much for your message. I actually have been on a very restricted diet for nearly four years now (almost the entire duration of my constant pain, which has been almost five years). I avoid wheat/gluten, refined sugars, dairy (I eat eggs, though), and many fats as they all make my IBS worse. I live on meats (not red meat), fish, veggies (except potatoes), fruits (except blueberries and cherries - I'm allergic), and cook with canola oil and have flaxseed for my fat intake. I can't handle nuts because of the fat content (I had fat malabsorption in one of my stool samples), which can be a real pain, plus I'm allergic to almonds. I'm a really sensitive person when it comes to foods and medications...I have to be really careful when trying new things so I don't have bad reactions (sometimes I can't breathe, I swell in my face and tongue and throat, and my throat closes). It's scary.
My doctors have told me my pain is all in my head as well. I've heard everything, from eating disorders to possibly having to have my colon removed! Thank goodness I didn't stick with those doctors! I do not have an eating disorder or a mental problem where I'm making this up. I have been diagnosed with endometriosis, fibromyalgia, IBS, and possible celiac disease. I hope to find a doctor soon who will be able to help me and understand my symptoms. I've seen over 100 of them so far.
I eat little meals throughout the day, otherwise I wouldn't be able to function. Eating large portions nearly kills me. I have to eat about every two-three hours. I guess that's healthy anyway, but it's annoying to have to plan ahead when I'm in class all day. I think there are a couple girls who are 15 and 16 years old on the site, and I know parents write in about their kids on this site as well (my Dad is one of them - his username is Musicprof). I am so sad that we all have to deal with such sensitive digestive systems!
Today has been a relatively good day for me in terms of my IBS-C, and yesterday was as well, and I am so thankful for that! I do pilates and stretching everyday to keep my muscles from tensing with the fibro (it works, but I'm usually tense because of the fibro and IBS pain). The pilates is a Godsend when it comes to bloating and when I need an energy pick-me-up. I highly recommend it!
Well, I'm off to choir. I hope you are feeling better and having a good day!
-Alisa
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Hi Alisa,I am still having trouble finding messages.I eat an awful lot of rice!!I have either a rice based cereal, banana and rice milk, or gluten free bread and gluten free jam for breakfast.For lunch,I have some sort of fish,cooked veg and rice and for my evening meal different cooked veg.with chicken.I stir fry the veg or bake it in the oven.I have mixed results with potatoes,but will try them again soon.I have been feeling better and better,but my weakness is chocolate and I ate some yesterday (gluten free)and have suffered stomach pains all day today.For a treat,I have rice cakes with something smeared very thinly on it.The only gluten free food I can buy here is bread,flour,rice cakes and soy sauce.Nothing is labelled gluten free so I have to experiment which is really scary between the IBS and celiac.Thanks for the post.It is so lovely to have a reply.
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Re: Alisa
#167552 - 04/06/05 10:09 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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I hope the dr's at the mayo clinic and UNC can help you. I'm very interested in the drug Naltrexone. Please keep us posted as to what they suggest and if you try this drug for your IBS.
I've also see MANY MANY dr's over the years and have heard the "its all in your head" way too many times also!!  It just makes me so angry! I wish those dr's could live in our bodies for just one day and than see them say its all in our heads!!!!
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Taking it one day at a time.....
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How do you get in to see a doc at UNC? I thought you were going to go see your doctor at Mayo. Wouldn't they give you the drug there? I'm confused.
Yes, let us know about the Naltrexone. My doc won't give it to me. I think you would have to have a doc write out a script and then mail it in to one of a few pharmacies over the web that are making the drug in the smaller mg version. Of course insurance usually will not cover this as most insurance companies stipulate which pharmacies you can go to. But I think a month supply came to around 30 dollars on the web, so that would be worth it! I don't know that I trust the internet pharmacies anyhow. Not sure how reputable they are. 
Glad you had a good day. Hope they continue! But we take what we can get, right? 
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Its weird because it seems like evryday I find out something else aboutmy IBS. Recently I have been having pain whevnever I need to pass normal stools if I try to hold off. I'm at work and I had to use the restroom, but my stomach started cramping terribly like I had diarhea and now that I have gone, it stopped cramping ? Have you ever experienced that.
My parents have been supportive. I moved to Miami from Charlotte without them so they want me to come home until we find out how to completely reduce the problems.My boyfriend is very supportive, he just refers to my stomach as sensitive when he tells other people about it. I was looking at some of the other post on here and I can't wait until I am attcak free.I proably should cut wheat and gluten out of my diet but it would be sooo hard. What type of foods do or can you eat on a reduced gluten diet.
I am so sorry you have fibromalgia, but you can beat that too! I just heard about it this past December because a girl I worked with had it. She was one of the most lively people, but when her fibromalgia hit, it basically changed her for the time being. I haven't tried pilates, I'm on Yoga, is it more difficult than Yoga?
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Keep Smiling
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Linda
#167619 - 04/06/05 12:12 PM
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Linz
Reged: 09/01/03
Posts: 8242
Loc: England
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Do you actually have celiac? Or do you have IBS and a gluten intolerance (not the same thing at all)?
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Re: Alisa
#167788 - 04/06/05 10:10 PM
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Alisa
Reged: 03/20/05
Posts: 51
Loc: Appleton, Wisconsin
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Hi Michele,
I will definitely keep you posted on the naltrexone. I haven't heard anything yet. I've resorted to acacia and flaxseed to keep me regular recently, and so I've been feeling a little better. I hope you are, too! I think it would be interesting for doctors to experience our pain for a bit and then see what they think. Maybe they'd help us out a little more and a little faster, too!
-Alisa
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Hi Linz,
Thank you for the Celiac information and the links. I haven't heard from any doctors recently, so we'll see if they get back to me this week. I hope they do! The Acacia and flaxseed are working well for me and I'm doing better this week! I'm much more regular! Thank goodness! I hope you are feeling better as well.
-Alisa
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Hi! I think being on a gluten/wheat-free diet has helped me immensely. You have to eat lots of rice (most people also have potatoes, but I can't since they don't agree with my digestive system), but there are lots of breads and other foods that are made for Celiacs. There are lots of websites that will help as well. If you google Celiac Diet or just Celiac Disease, you'll find TONS of info. Pilates isn't much harder than yoga, but it's more active, I think. You should try it! It's wonderful and a stress reliever as well. As for the cramping, I get cramps a lot. Mostly when my bowels are moving due to supplements or sometimes I'll get cramping and nothing will happen at all! It's confusing, and I think my intestines are just sore and confused as well! I'm hoping that the acacia and flaxseed combination I have going will keep me regular.
-Alisa
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Hi Linda,
I'm so sorry to hear you've been having problems after eating the chocolate. It's so frustrating to be so affected by food, isn't it? I'm going on a day-trip with my choir tomorrow for a concert performance, and I have to bring all my own food to make sure I won't get sick before I sing. It's a hastle, but at least I'll know it will be safe. I'm doing a little better on acacia now. 1/4 tsp at night seems to be the right dose for me. We'll see how it keeps up. I hope you're feeling better now, and I hope you'll be able to find more gluten-free products that are labeled. Do you have a health food store nearby? Most health food stores label their foods if they're for Celiacs or diabetics, etc.
-Alisa
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Hi there! To get into a doctor at UNC you have to send your records, a referral, and wait for the doctor to review everything. After that, he or she will set up an appointment if they feel they can help you. I'm in contact with doctors at MAYO as well, but I haven't heard back since the receptionist said the doctor was willing to review my records. So, I'm waiting to hear back from both places. I'm not sure if I'll be able to get Naltrexone, but MAYO is looking more promising than UNC at this point. I'll keep you updated!
I'm feeling better on acacia (1/4 tsp at night), so I'm hoping that will keep up. I hope all is well with you!
-Alisa
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Hi Linz,
I was told my blood tests showed a very high chance of celiac,but I never had the full test done as it required eating gluten again and I could not face the severe pain and illness that causes me.For me the end result is the same,I cannot eat gluten.If I have even the smallest amount,I become ill very quickly.Combining gluten free with the IBS diet has brought the most relief I have had in years,but I make many mistakes. I have to buy my treats when I go home to Scotland as there is little here, in France, for me.Thanks for your concern.
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Good that the Acacia seems to be helping you. I have had no success with any SFS as of yet (tried about 6 so far). Not acacia as of yet. I have delayed gastric emptying so SFS is not recommended for this. But with the IBS-C it is recommended. So what am I to do? 
I wish I could get into Mayo or UNC, but I don't have a doc to give me a referral and my records are scattered all over between about 4 doctors and it cost money to get them!
I read that even after the clinic trials for naltrexone, it will still take 2 to 5 years for it to be made available. Even if you can get a script for it, there are only a few mail order pharmacies who produce the low dose and they provide it at 4.5 mg and the dose for IBS is only 0.5mg. So, you would have to try and cut it into 8 pieces. Impossible.
I don't know how I will make it for up to 2 more years without this drug and it will probably end up being closer to 5! Why do they do this if it shows that it can help people and it is already being used safely for other conditions?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Sorry to hear about your problems, Linda, I was just wondering whereabouts in France you are? I go to Nice several times a year and buy lots of stuff in an HFS there - they have tofu, quinoa, lots of other stuff. I can't remember the address right now but could look it up if it is any use to you.
I agree France is difficult about labelling - I was surprised about that as I thought labelling in the UK (which is generally very good) was because of EU regulations so would be the same in France.
One of the best things in France is the bread which is no use at all to anyone eating GF - this must be very frustrating for you!
Do you eat chestnuts - they seem to be a good source of soluble fibre plus a bit of protein and no gluten - and quite widely available as they are grown a lot in France and Italy.
Coincidentally I live in Scotland most of the year - just outside Strathaven now, but I used to live in Glasgow. Where do you shop when you are back over here? Would love to swap notes with you!
Best wishes,
Josephine
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So sorry I did not see your post until today.I live in the part of France which is right beside Geneva in Switzerland.It is very rural here.You are right about the bread.I miss it and the cheese,but not the stomach pains they give me.When I was in Scotland in March,I found the free from sections in Sainsbury's and Tesco very helpful although trying to sort out gluten free and IBS friendly is very hard work.Still,at least it was well labelled and all in English.I too was shocked at the poor labelling here in France,but it is better than it was.I find it easier to cook for myself as I then know that every ingredient is safe.Thank you so much for your comments and good luck to you.
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