Hi. I just joined this site hoping to get some answers and help hopefully. But I dont think I will. I have IBS-D, Gastroparesis (delayed emptying of stomach) and I am fructose intollorant. I also have many more health problems but I won't go into that. I have gained alot of weight and I don't know how since I can hardly eat anything with gastroparesis. I am constantly bloated (looking 8 months pregnant) everyday, which pulls on my back and puts me in constant pain. My feet constantly go numb and in pain, and my knees hurt. I cant be on my feet for long. The bottom line is, since I cant eat any fruits or veggies or red meat, I don't think I will be able to lose weight and that puts me at risk for diabetes, heart, and more problems. And eventually death. I don't know why this happened to me but my life keeps getting worse and worse. I exercised last week and I gained a pound. This got me so depressed I wanted to just give up. Why exercise if it won't work anyway? I want to be around for my son, and I want to have some quality of life, which I dont have right now. I know if I could get some of this weight off, it might help my other conditions, and I could feel half way decent. I have problems just cooking for my son, I have to take breaks cause I cant stand there and cook. The pain is to bad. And my doctors are of no help. I keep asking, and they just blow me off. Well, thats it. I am currently waiting to be approved for disability. Cause I need something to live on. My life is really bad right now and I am only 42 years old! Any advice??
I'm so sorry you are in such an awful situation with your healthy right now. It sounds very frutrating and I can see how you can't help but be depressed. You have my sympathy. As for advice, I'd keep pursuing different doctors and specialists until you can find one who will help you. Search the web for support groups, forums, websites, etc. that focus on your Gastroparesis - there MUST be others out there who suffer as you do who can give you advice. Have you seen a dietitcian who works with ISB-D patients? There must be specialists who work with those who have the dietary issues that you have. Also, and this may be most important of all, find a good therapist to help you deal with your disease and the resulting depression and frustration you're going through. You're right, you ARE still young, and you've got your son to think of. You CAN change your life, you just have to be doggedly persistent in finding a doctor who can help, a dietician and a therapist. My heart goes out to you. Good luck.
(((HUGGS))) sorry that I have no advice for you. I can only offer support if you need it.
Lagirl, I'm really sorry to hear about all of these challenges that you're facing right now. I am not a medical professional, but it sounds to me like you are also struggling with some depression right now, which is not surprising, since you are also dealing with a chronic illness. The fact that you are struggling just to take care of your son -even though you want to be around for him and want to take care of him - tells me that you probably need help with your depression, either through therapy or meds. It's also a vicious cycle - when you feel better, you want to do more, you're more positive, you're more optimistic, you meet challenges more easily, and you end up being more successful in whatever you are hoping to accomplish - conversely, when you don't feel good, you don't want to even try to exercise, you feel bad about yourself, you gain weight, and your depression increases(I don't have IBS, but I have struggled for years with depression and weight issues, and I know how they feed off of each other. Adding in IBS makes it a bigger challenge, but not an insurmountable one.) Also, just because you exercised one day and then gained a pound doesn't mean that exercise still isn't important and worth doing. Even if you never lost a single pound from exercise, you would still be improving your lung function, strength, heart function, flexibility, and decreasing your chances of getting any number of other diseases - cancer, diabetes, heart disease, etc. I know it's hard to make yourself do something that's uncomfortable and difficult and not see any results right away, but it should help a little bit to know that even a little exercise can really benefit you in many ways.
Concerning your diet, it's definitely going to be more of a challenge to lose weight if you aren't able to tolerate any fruits/vegetables, but not being able to eat red meat should not be a problem at all - it tends to be higher in fat and cholesterol anyway. Chicken and seafood are probably healthier choices. You probably do need to talk to your dr. about how to get enough vitamins and other nutrients in your diet and possibly consider an elimination-type diet to see if there are a few fruits and veggies (not all fruits contain fructose, btw) you might be able to gradually introduce into your diet and eventually tolerate.
As far as your doctors 'blowing you off', you may need to get new doctors, or you may need to change the way you communicate with them. Are you saying to them, 'I'm concerned about my weight, and I need help planning a healthy diet that will not aggravate my symptoms. Please give me the resources I need to do this.' ? If your doctor is not responding to clear and direct requests, then yes, you need to find a new doctor. However, be sure that you are clearly communicating what it is you want your doctor to do. They're not mind readers, and many medical professionals are eager to help their patients make the changes they need to improve their health and well-being. However, there are also many docs out there who don't care or don't want to help. Here's a link about talking to your doctor from the International Foundation for Functional Gastrointestinal Disorders: http://www.aboutibs.org/site/about-ibs/manage ment/working-with-your-physician/
It also talks about what to do if you need to change your doctor and gives suggestions about those situations.
I would also suggest that you talk to other IBS patients and find out what they are doing, via online communities, etc. Here are a couple of links I found, but undoubtedly there are many other resources out there: http://www.helpforibs.com/diet/
I hope that you will find some useful information here and feel encouraged, strengthened, and motivated to find the information you need to get the answers you're looking for. Remember how much you love your son, how much you want to live a full and productive life, and do NOT let yourself be discouraged! Reach out for help and advice from others who have been there, and take charge of the changes you want to make. Get rid of the people in your life(including those docs, if necessary) who aren't willing to join you on your journey to the best possible state of health - both mental and physcial. If you are a mother, you already know how to be strong and committed. Use those abilities to take charge of becoming healthy again, and don't let people stop you! It will not be easy, but I am sure you'll be able to do it.
My best wishes to you on your journey. I hope you'll post again as you find the answers that you need to return to health.
Lagirl, I'm really sorry to hear about all of these challenges that you're facing right now. I am not a medical professional, but it sounds to me like you are also struggling with some depression right now, which is not surprising, since you are also dealing with a chronic illness. The fact that you are struggling just to take care of your son -even though you want to be around for him and want to take care of him - tells me that you probably need help with your depression, either through therapy or meds. It's also a vicious cycle - when you feel better, you want to do more, you're more positive, you're more optimistic, you meet challenges more easily, and you end up being more successful in whatever you are hoping to accomplish - conversely, when you don't feel good, you don't want to even try to exercise, you feel bad about yourself, you gain weight, and your depression increases(I don't have IBS, but I have struggled for years with depression and weight issues, and I know how they feed off of each other. Adding in IBS makes it a bigger challenge, but not an insurmountable one.) Also, just because you exercised one day and then gained a pound doesn't mean that exercise still isn't important and worth doing. Even if you never lost a single pound from exercise, you would still be improving your lung function, strength, heart function, flexibility, and decreasing your chances of getting any number of other diseases - cancer, diabetes, heart disease, etc. I know it's hard to make yourself do something that's uncomfortable and difficult and not see any results right away, but it should help a little bit to know that even a little exercise can really benefit you in many ways.
Concerning your diet, it's definitely going to be more of a challenge to lose weight if you aren't able to tolerate any fruits/vegetables, but not being able to eat red meat should not be a problem at all - it tends to be higher in fat and cholesterol anyway. Chicken and seafood are probably healthier choices. You probably do need to talk to your dr. about how to get enough vitamins and other nutrients in your diet and possibly consider an elimination-type diet to see if there are a few fruits and veggies (not all fruits contain fructose, btw) you might be able to gradually introduce into your diet and eventually tolerate.
As far as your doctors 'blowing you off', you may need to get new doctors, or you may need to change the way you communicate with them. Are you saying to them, 'I'm concerned about my weight, and I need help planning a healthy diet that will not aggravate my symptoms. Please give me the resources I need to do this.' ? If your doctor is not responding to clear and direct requests, then yes, you need to find a new doctor. However, be sure that you are clearly communicating what it is you want your doctor to do. They're not mind readers, and many medical professionals are eager to help their patients make the changes they need to improve their health and well-being. However, there are also many docs out there who don't care or don't want to help. Here's a link about talking to your doctor from the International Foundation for Functional Gastrointestinal Disorders: http://www.aboutibs.org/site/about-ibs/manage ment/working-with-your-physician/
It also talks about what to do if you need to change your doctor and gives suggestions about those situations.
I would also suggest that you talk to other IBS patients and find out what they are doing, via online communities, etc. Here are a couple of links I found, but undoubtedly there are many other resources out there: http://www.helpforibs.com/diet/
I hope that you will find some useful information here and feel encouraged, strengthened, and motivated to find the information you need to get the answers you're looking for. Remember how much you love your son, how much you want to live a full and productive life, and do NOT let yourself be discouraged! Reach out for help and advice from others who have been there, and take charge of the changes you want to make. Get rid of the people in your life(including those docs, if necessary) who aren't willing to join you on your journey to the best possible state of health - both mental and physcial. If you are a mother, you already know how to be strong and committed. Use those abilities to take charge of becoming healthy again, and don't let people stop you! It will not be easy, but I am sure you'll be able to do it.
My best wishes to you on your journey. I hope you'll post again as you find the answers that you need to return to health.
I suffered from gastroparesis...I know EXACTLY what you are going through. I strongly believe if you get this fixed, everything else will get better. Please go to the yahoo groups/support forum...they will help you so much! Here is another website http://www.monkeygirl.atfreeweb.com/gastrolin ks.htm
Monkeygirl is on the same forum I am talking about...and the link is on this website.
Have you tried Reglan or domperidone???? I couldn't handle the drugs...but some people do just fine.
Good luck and I am here if you need to talk...it is a HORRIBLE thing to deal with.
I googled "gastroparesis" because I was curious if that was the cause of some intermittent stomach problems I've had, and "gastroparesis diet" was one of the first topics that came up. So while I agree with others who have encouraged you to find a care provider who will guide you, I would also suggest you look on-line for diet information specific to your disorder.
Many of us who are overweight have impatience for anything that isn't a quick fix. We eat for the immediate gratification, and we want diets and exercise to offer us that same instant reinforcement. For some, the benefits of changing lifestyles takes time and patience. Exercise is beneficial whether or not you lose weight this week. Muscles need to be strengthened, especially the heart muscle. These are essential for quality of life, or for life at all really.
It's almost a side benefit that exercise burns calories, and that stronger muscles burn more calories than weaker muscles.
Coming to CC is a step toward the solution for you, lagirl1966. You see your life as one big suck fest, and you want to make it better. A friend of mind said, "Recovery is not for the squeamish" and I love that phrase because it speaks to the strong side all of us have that is needed for this challenge. Like muscles, we need to exercise our strengths to make them strong. Replace "I can't" with "I can." Replace "It's hard" with "I'm determined." Replace "My life keeps getting worse and worse" with "As long as there's life there's hope."
If all you can do is walk for 3 minutes, take those three minutes. If all you can do is lift 1 pound cans while you sit on the couch, lift those cans. Keep after what you can do, day after day. The days will build into weeks and months, and you will see progress. Take care...
I have gastroparesis, too. It takes a lot of pushing to get the right medical care for it - fortunately, my fiance is an attorney who doesn't take no for an answer, and he pushes me to push the doctors, and threaten when appropriate.
First, they need to give you proper pain medicine. GI doctors shirk at this because opiates slow your motility further, but they are all that keeps me out of the hospital. I take morphine sulphate and Norco (vicadin) orally.
I went through the gauntlet of motility medications - neither Reglan or domperidone helped me, in addition to many others. I am currently taking octriotide by injection daily, which is designed to relieve the bowels. If I take it at night, I usually have a bowel movement in the a.m.
Onto your delayed motility- have you had a HIDA scan? How delayed is your gastric emptying? Have you had your gallbladder removed? There is also a test and procedure known as an ERCP with Sphincterotomy, where doctors take a look at the sphincter of the odi and make a small cut in that valve if appropriate. That proceedure put a stop to the very worst of my pain, but not all of it. The odi is a little valve right before your intestines, and if it isn't opening, or if it has spasms (mine did) you will be in pain whenever you try to process food. After the ERCP my motility went from 6 hours plus to under an hour (which is now too fast...)
Where do you live? Do a local check for an expert in neuro-gastroparesis and motility issues. I have one in San Francisco, and I know there is one at Duke in North Carolina.... these are the only people who will help obscure GI issues, Normal non-specialists just throw their hands up in the air, as you've experienced. I got my treatment by showing up at the hospital writhing in pain on pretty much a weekly basis before they referred me to a specialist. I refused to leave until they had done more tests.
I really, really hope you feel better soon.
If only I had known of those treatments when I was going through it!!! Mel...could you tell me how octriotide helps you have a bowel movement if the injection inhibits the secretion of many hormones, gastrin included? I've read it decreases GI motility...but you say it allows you to have a bm the next morning???
My GES showed severe delay as well as my Stitz Marker...hence my surgeons (and my) decision to remove my colon...I am thankful I had this done now, and my gastroparesis has since been relieved.
lagirl...I agree with Mel that you need to find a specialist that knows about these conditions...where I lived, there was NONE...and I needed to travel, but it was soooo worth it!!
BE YOUR OWN PATIENT ADVOCATE!
I had to look up what gastroparesis was as I had never heard of it before. A thought came to mind and I started to check that out and thought I would pass it on. I have had some very effective treatments for long term sacroiliac pain by going to a holistic massage therapist. I noted during the treatment that I would feel digestive response as she hit certain accupressure points. She was well aware of the connection.
Anyway, that got me to thinking about your condition. Usually when you are given medication, there will be some sort of unpleasant side effect so I am kind of the avoid it if I can sort of person. I did look up gastroparesis with massage therapy and accupuncture on google and found a few studies that indicated some very good results using these treatments. The difficulty is that insurance often doesn't cover these treatments. Too bad too because at least for the sacroiliac I am finding it SO much less expensive than the pain management center I was sent to. And the results are so much better.
Tattoed_kitty,
Thanks for your advice. I am a member of inspire which is a good forum for others who suffer from these conditions. I have made many friends. But they no nothing about weight loss. I am still looking for a new GI doctor but there are not many choices in my area. I really want someone that will listen to me, instead of telling me that I just complain, which is what my current GI doc said. And, my insurance dosent cover a dietition. I guess I can online and look up the websites you all told me about.
Thankyou
spoiledcandy,
Thanks for your thoughts. It did make me feel better.
txcaroline,
Thanks for your response. I regulary go to the ibs websites you mentioned. And you are right, I do suffer from depression also. My health going downhill has just made it worse. I currently see a therapist, and I am on medication to. But I don't think any medication will take away all the depression because living like the way I do, with chronic pain and discomfort, is hard to be happy. I didn't know that exercise would improve those things. I do eat alot of chicken and fish, and turkey to. So I guess that is good. I didn't know that some fruits didn't have fructose though. Where could I find out online about which ones? Also, you are right about my doctors. I have come right out and asked them, but they kind of blew me off. My therapist is intervening to get some action from them. I signed a release the other day in her office. So hopefully I will. Thanks for all your advice.
lunger,
Thanks for your response. How did you get rid of your gastroparesis?? I have reserched and researched, and there is no cure. Only surgery, which is very very risky. I was on reglan for 2 years and it severely damaged my eyesight so I went off of it. I have never tried the other one. How severe was it for you?? I don't have vomiting with mine at all. Just the heartburn and bloating. Thanks for the link.
bad4moon,
Thanks for your suggestions. I will keep all of that in mind. You are right. I am impatient. I want it off now. But I can tell you, before I got sick I use to exercise everyday and I lost over 50 pounds then. So I am just praying that I can now. THankyou
mel_e_mel,
First of all, you are SO lucky your husband is an attorney. That must really help. And I don't really have any pain with the Gastroparesis. It is mostly the IBS. I was on reglan for 2 years, but I quit it because it damaged my vision. I still have blurry vision today from being on it. Plus, it can cause symptoms like parkinsons disease. The shaking, and uncontrollable movements. The FDA just came out with a warning for it. Yes I had the gastric emptying scan and I emptyed with delayed 6 hours. I think that is what it was. I still have my gallbladder. I dont think they have ever checked it. I live in Iowa, in a small town and there arent alot of choices for GI doctors. The one I have, told me I complained to much which really upset me, so I am looking for a new one. Good for you for making them do the tests. It really pisses me off that doctors won't do anything unless you scream at them. Good luck to you to.
Kratzer,
Thanks for the suggestion, but I cannot afford to. But I will not stop trying to find someone. Thanks
lagirl1966:
*whew* When you called me "bad4moon" I thought I had pissed you off! But it appears to be a typo, right?
Hang in there. By being on CC, you are working to be in the solution. Progress, not perfection. And, as Churchill said, "Never never never quit!"
MAD4moon,
I am sorry I got your name wrong. I also have blurry vision and I guess I didn't type it right. So sorry!
I exercised yesterday! I actually got through it. I just kept taking breaks but I made sure I did the whole workout and I did. I hope its going to show on the scale! Thanks for your support.
Sorry to hear about your health problems lagirl. I have IBS and that's difficult enough to deal with so I can imagine how frustrating it is to add in other gastro problems.
I'm curious as to what foods you typically eat. Since fruits and vegetables are pretty much out and I would assume most processed foods are out since many use high fructose corn syrup, what are you living on?
Also, depression meds can sometimes help with the symptoms of IBS. Perhaps a low dose of an anti-depressant can kill two birds with one stone - help elevate your mood and take the edge off your IBS.
Pavlovcat,
Thanks for your response. As for what I am eating, its pretty basic. I eat what I know that I can handle. I make homemade pasta with sauce, no meat and what I use for sauce is just plain tomato sauce with seasonings. I seem to do good with that. No problems at all, and it is easy to digest. I also eat a sandwich everyday with lunch meat on it and mozzarella or provolone cheese. It helps firm my stools which I like because I am on questan powder for the diarreah. It helps control it but not always. Sometimes I eat frozen fries and fish baked in the oven. I really don't know what else to eat. With gastroparesis fiber is a big NO so I don't get any of that. Its strange cause they tell you to eat fiber for ibs. Well, I cant.
I have tried so many antidepressents and the only one that seems to not cause weight gain in me is lexapro, which I am on right now. I have heard there are some that help with the ibs symptoms, but they also cause weight gain and I can't gain any more. I am in to much pain as it is from my gain.
Its really a terrible situation. All I want to do is lose weight. I think medication made me gain the weight and I am so angry about that. I have never weighed this much in my life. So I am going to keep exercising as much as I can and hopefully I will lose some. Thanks for caring.
I can't see how you're gaining weight or are overweight on that kind of diet unless you're eating A LOT of pasta and numerous sandwiches. Have you taken the step of measuring what you're eating and counting the calories? If so, how many calories are you consuming each day? And if you haven't, that is definitely the place to start.
In regards to the fiber, there are two different types of fiber. Are both soluble and insoluble fiber out of the question because of your gastroparesis? Would eating several small meals throughout the day help your gastroparesis and also allow you to incorporate a little more fiber in your diet? (Forgive me, but I'm quite ignorant of gastroparesis.)
More info would be helpful - height, weight, etc. You said that your feet and legs hurt and go numb all the time. Is that from another health issue?
I'm just trying to help you find a starting point in your effort to lose weight. It can be easy to be distracted by health issues and spiral into a cycle of hopelessness and depression until you finally feel like you have the "right" to give up trying.
Hi. No I can't eat alot. One sandwich and pasta for supper is all I have in a day. Writing it down would be a good idea. I will start that today. As for the fiber, Gastroparesis cant have any. It has trouble processing it through. It is possible that I could develope a bezoar (simular to a hairball in a cat). It is when food won't digest and will form a ball and restrict food from passing through. I have never had that, and I don't want to! What gastroparesis is, is damage to the vagus nerve, which helps process food through the stomach. When this nerve is damaged food moves VERY slow. It take me up to 6 hours to digest the food. Where is should only take 2. So I have to be careful. It even says I cant take a supplement. So no fiber at all.
I am 5' 4 and right now I weigh 212. Which dosent make me happy. The numbness and pain in my feet isn't from anything else. I am sure it is from the weight gain cause I didn't have it before I gained.
Yes you are right about the hopelessness. I almost gave up and said oh well I cant lose weight anyway, I might as well give up and just die. Well I dont want to die. I have a 15 year old son that needs me. No, it isn't fun living like this everyday. Especially with the pain in my back. By the way, I have that from the bloating everyday. It looks like I am pregnant. And it is so painful. I keep trying all kinds of gas meds. And it is gas because I deficate all day long. That is part of IBS. And I also found out radiating pain down your back to your legs is also a symptom of IBS. Great. HUH? Hope this is enough info to get you somewhere. Thanks alot.
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