Anyone with digestive disorders?

cuppycakesmeg
cuppycakesmeg Posts: 10
in Introduce Yourself
Hi. My name is Meg, and I joined on Monday. I have a lot of digestive issues, basically Chrohn's. I do not have Crohn's, but my body acts like it does. I can eat very little foods, especially veggies. I wondered if there was anyone here that has similar issues and if so, what you have done to improve. I am trying to follow the low FODMAP foods, and Paleo diet (about 90%).

I have lost about 20 pounds since December, with most of that the first 5 weeks. I have slowed, and get discouraged sometimes. But, I am seeing loss in inches, and I am working out. So, I know it will kick back in, especially now that I am tracking my calories. I had a big aha recently, I wasn't eating enough. Whaaaaat? : )

Thank you!

Cuppy Meg

Replies

  • patriciasimmons12
    patriciasimmons12 Posts: 15 Member
    I have crohns and have lived with it for many years. There are times when I have a severe flare I can only eat plain whole grain waffles with nothing on them or oatmeal cookies. Not healthy but that is the only things I can eat (besides a clear liquid diet). I have been on clear liquids as long as 3 months before.
    I don't personally believe in any diet that excludes any food group as bad because I believe our bodies need meat, veggies, fruit, and breads. I believe in moderation of all things.
    Does it really matter what the scale says if you are losing inches and feeling better? Muscle weighs more than fat so if you are working out that could be part of your issue. I have several medical issues so I can't seem to lose weight no matter what I do! Thyroid is really messed up.
    Be careful of fad diets since they cause weight gain when you start eating normal again. Wish you well.
  • changejen2013
    changejen2013 Posts: 87
    I was born with gastrointestinal issues which make bowel movements difficult. I've also got a gluten sensitivity and thus have embarked myself recently on a gluten-free diet. I'm told it will help both issues so that's my plan.
  • cuppycakesmeg
    cuppycakesmeg Posts: 10
    Thank you for your input, and sharing. I am sorry to hear you have CD. It is a nasty bugger, if my symptoms are any indicator. I would not wish it on anyone.

    I am purely not eating what I know makes me sick. It has been a long struggle, and continues still, to find the foods I need to eliminate.

    I do need to lose weight, but gaining muscle is also important. I need to lose weight for health issues other than my tummy.
  • cuppycakesmeg
    cuppycakesmeg Posts: 10
    Jen,

    I can tell you, when I eat gluten I am far worse than when I don't. Good luck!
  • LauriePar
    LauriePar Posts: 257 Member
    I have ulcerative colitis and during a flare up, I lower my fiber intake and lessen my dairy. I take a multi vitamin and eat foods high in iron . I don't drink any alcohol during a flare because it makes it worse. Same with spicy foods. Other than that, I just take my meds and stay within my calories.
  • patriciasimmons12
    patriciasimmons12 Posts: 15 Member
    Thank you for your input, and sharing. I am sorry to hear you have CD. It is a nasty bugger, if my symptoms are any indicator. I would not wish it on anyone.

    I am purely not eating what I know makes me sick. It has been a long struggle, and continues still, to find the foods I need to eliminate.

    I do need to lose weight, but gaining muscle is also important. I need to lose weight for health issues other than my tummy.

    I understand about eating the foods your body can accept. It's just not worth it to eat foods that can cause me problems. Some foods can put me in the hospital. Good luck.
  • tchell99
    tchell99 Posts: 434 Member
    I've had Crohn's for about 15 years or so. A couple years ago got sepsis in the gut, had several emergency surgeries, and emerged with 8 ft less of my small intestine and an ostomy for 4-5 months. Things are now pretty much under control with medication - that is the basically the only thing that works for me, other than reducing stress where possible. After the ostomy reversal I gained over 40 lbs. in about a year and am now getting back down.

    During flares, it doesn't matter too much what I eat - the effect is constant diarrhea. But at least I don't get the horrible pains and throw things up like I did pre-surgery. It took time to find the right type and level of meds, but I think we are there (and only because the bad parts of my intestine were removed and I finally finished my disseration, a major souce of stress).

    You say you "basically" have Crohn's, but not sure what that means. Do you have extreme pain after eating/drinking even simple things (like a piece of bread)? Are you afraid to eat or only eat when you know you have time to be chained to the toilet or so hungry you are willing to deal with the roiling stomach pains? Afraid to leave the house for fear of not being near a bathroom, even for a run to the store? Have you found yourself curled up on the floor, sweating, then shivering, and in too much pain to move or talk? If yes to any of these, you must see a doctor asap. If no to most or all, you may have some other disorder that may still warrant some tests.

    Digestive disorders are nothing to mess around with - I nearly died because I pushed through the pain for so many years that I couldn't even tell the difference between sepsis and a particularly bad bout of pain and vomiting. Feel free to friend me :)
  • cuppycakesmeg
    cuppycakesmeg Posts: 10
    You say you "basically" have Crohn's, but not sure what that means. Do you have extreme pain after eating/drinking even simple things (like a piece of bread)? Are you afraid to eat or only eat when you know you have time to be chained to the toilet or so hungry you are willing to deal with the roiling stomach pains? Afraid to leave the house for fear of not being near a bathroom, even for a run to the store? Have you found yourself curled up on the floor, sweating, then shivering, and in too much pain to move or talk? If yes to any of these, you must see a doctor asap. If no to most or all, you may have some other disorder that may still warrant some tests.

    Digestive disorders are nothing to mess around with - I nearly died because I pushed through the pain for so many years that I couldn't even tell the difference between sepsis and a particularly bad bout of pain and vomiting. Feel free to friend me :)
    [/quote]

    I went to the doc in 2011after having had diarrhea 6-10 times a day for 2 months. I had been a vegetarian for 7.5 years at this point. I had gottent to the point where I couldn't eat any meat subs, veggies, eggs, onions, peppers, garlic...I was very sick. I was overaeting to make up for the diarrhea, which kept weight on but likely kept me sick. I had test upon test upon test. The GI doc was sure it was CD. He never found any inflammation, nor any Celiac. He gave me pancreatic enzymes, which helped. I also had a myriad of other health issues at the same time. I was diagnosed with diabetes in 2012. The enzymes worked so well for me that my doc thinks I may have chronic pancreatitis, even though we have no clue how I would have gotten it.

    I have low D and B12. I never did lose weight. I still cannot eat any sulphuric foods. I have chronic pain (spasms) in my lower right quadrant, near where my right ovary used to be. I had surgery 11/11 in which they found a portion of my bowel attached to the pelvic wall. This was released and he put on a mesh. I am having the same pains again, and now in my middle lower abdomen. If I eat, knowingly or not, a food I cannot handle, I am in the bathroom before my meal is finished. I get cold chills all over when I have a flare and need to use the restroom. I cannot wait. And I have chronic D almost all the time. I have been "sick" for over a month now. My doc has said I need to get worse to warrant more tests. I am not convinced I don't have CD, maybe I just don't have bowel signs yet? Is that possible?

    I have been diagnosed with severe IBS, doc calls it Crohn's-like IBS, with likely minor chronic Pancreatitis.

    Tchell, oh my! I am so sad you lost so much of your intestines. But, I am so glad you are healthy and getting healthier!
  • tchell99
    tchell99 Posts: 434 Member
    Sounds Crohns-like, Meg, but it can be pretty hard to diagnose, and there are so many different digestive disorders! It is possible that you don't have any markers (polyps or lesions usually seen in colonoscopies) just yet. Or it's something else.

    I am so sorry to hear about your symptoms, all the tests (which I know firsthand are miserable), and the surgery. Not sure what to tell you except don't ignore it. Keep up with the doctors visits and get a second or third opinion as needed. Makes me nervous your doc needs additional symptoms or duration to warrant more tests...
  • mlrodgers381
    mlrodgers381 Posts: 71 Member
    I don't have any actual diseases, but I did have digestive issues. I started Paleo about 2 weeks ago, and have noticed a considerable difference. I think I'm called Paleo Primal, because I do eat some dairy. But I've changed to all grass fed meats/cheeses/dairy whenever possible. I also think I may have a sensitivity to gluten, although I don't think that I am outright "allergic" to it, so I've also been mindful that if I do eat any kind of "products" (that aren't necessariy "Paleo") that they are gluten free. The only issue I seem to be having is getting enough potassium, so I've had to start taking a supplement for that. I'm finding that I'm not so good at balancing everything that I eat in a day to have "all" the nutrients that I need without going over something. Since I'm trying to lose weight, I'm trying to keep the fruits at the bare minimum, because of the high sugars in most of them, but I still am eating fruit, just not truckloads of it. Also, there are not a lot of fruits that I like very much, and the ones I do like are all the high sugar ones!! I think that everyone has to listen to their own bodies, and what there own bodies tell them. If your body reacts to breads, then don't eat them, or don't eat a lot of them, etc...Because if your body doesn't tolerate certain foods, then trying to eat from all the food groups, might not be best for you. Anyways...that's my say!! :smile:
  • gatorginger
    gatorginger Posts: 947 Member
    I used to have cramps and dirreha often before i was finally diagnosed with a b-12 deficiency. Once I started taking the B-12 my stomach issues disappeared. B-12 is good for the nervous system so maybe that is why it helped not sure but all I know was all my stomach issues went away once I started the B-12 vitamin
  • Zelinna
    Zelinna Posts: 207 Member
    Digestive disorders are nothing to mess around with - I nearly died because I pushed through the pain for so many years that I couldn't even tell the difference between sepsis and a particularly bad bout of pain and vomiting. Feel free to friend me :)

    Definitely don't mess around with digestive disorders. One of my close friends actually died this way. She had Crohn's and colitis and was trying to be strong and push through the pain. She ended up in a coma for 3 weeks before her family took her off life support. Prior to this she had been stable for close to 5 years.

    The one thing I wish she did was reach out for help when she wasn't feeling well. She would be in the hospital for a week or two and not let anyone know until she was out. She didn't want anyone to worry about her, but what she didn't get was that when we didn't hear from her for that amount of time we would worry anyways.
  • JenniferNoll
    JenniferNoll Posts: 367 Member
    I'm a crohnie too, and went undiagnosed until my 32nd birthday. Chron's sucks, but I'm learning more and more how to live with it. I love to have crohnie friends on MFP because we have lots to talk about. Feel free to friend me, no matter what your digestive disorder may be. We can trade ideas for bowel friendly food.
  • GoTeamMeaghan
    GoTeamMeaghan Posts: 347 Member
    I'm a Chronie kid too!
  • JenniferNoll
    JenniferNoll Posts: 367 Member
    Oh, did they do biopsies, or the Prometheus Serology Seven series? A possibility is something called acute lymphocytic crohn's disease. Walks like crohn's, quacks like crohn's, but doesn't "look" like crohn's.
  • SuziWX
    SuziWX Posts: 7 Member
    I have Celiac Disease; I was diagnosed in 2006. And I just joined today as well, so hi everyone! :)
  • 6550mom
    6550mom Posts: 206 Member
    I had ulcerative colitis for quite a few years. When it got out of control and I was maxed on meds (prednisone and remicade and everything in between), I had my colon removed. I had an ostomy for a month and then was 'reconnected'. I will never have a normal digestive system, but have learned to adapt and take the occasional Imodium when needed. I also have to be careful of my hydration. The Vitamix has given me back my fruits and veggies in larger quantities than I could ever tolerate. I can't eat meat to this day because of the memories of how awful it made me feel.

    And for anyone who is reading and might be confused since the terms sound alike:
    IBS- irritable bowel syndrome. Symptoms of abdominal cramping or diarrhea and food sensitivities may mimic inflammatory bowel disease and can be quite severe. Constipation or alternating constipation with diarrhea may occur. Unlike IBD- inflammatory bowel disease, IBS is not potentially fatal and is not an IBD. When a colonoscopy is done, nothing abnormal is seen in the structure or lining of the bowel.

    IBD- Inflammatory bowel disease includes Crohn's disease and ulcerative colitis. These diseases are autoimmune in nature and characterized by ulcerations in various parts of the GI tract that can be seen on colonoscopy or other tests. These ulcers may and often do bleed and become inflamed. This leads to bloody, mucousy diarrhea and potentially life-threatening infections, bleeding, constriction or dilation or rupture of the colon. This does not happen with IBS. Severe IBD is debilitating and increases the risk of colon cancer (more for UC) after about 10 years.

    Both conditions can be distressing, but they are not the same thing or related except by some overlapping symptoms.
  • littlelu222
    littlelu222 Posts: 37
    I was just about to post something like this! =) lol

    I have a number of different food allergies, seem to get a new one every time I eat something. Along with that I also suffer from an undiagnosed stomach/intestinal disorder. Have done sugar, EGD, HIDA scan, sonogram. Going to check for gluten in two weeks at an allergist. I really can't eat much of anything without getting sick. Severe nausea, vomiting, stomach cramps, and extreme bloating (Like seriously, I look like I'm pregnant, but I'm not lol) after eating. Also suffer from probably the most brutal nausea and vomiting in the morning, depending on when I wake up, it can last anywhere from three to five hours (But again, not pregnant :) So basically right now the only thing I can really eat without getting sick are fruit and veggie smoothies.

    Sorry if any of this is TMI, but if any of you have a clue what might be going on with me, please share! I'm desperate here!!! :sad:
  • 6550mom
    6550mom Posts: 206 Member
    That actually sound quite a bit like irritable bowel syndrome, unless you and your doc have considered that and already ruled it out? What they used to call 'spastic colon' is now part of the irritable bowel syndrome collective of symptoms/descriptions.

    Ask your doc if this could be your problem. There are some meds that help regulate the motility of the colon that can help.
  • ambrosiah
    ambrosiah Posts: 20
    Hey Meg! Your symptoms sound just like mine were. I had to go to three different GIs before I found one who could help me and the official diagnosis was Crohn's. Getting a second and third opinion was the best thing I ever did. The longer you flare your body is forming scar tissue, fistulas and abcesses that will eventually lead to surgeries. I've been flare free for over a year. When I'm not flaring, I can eat anything. When I am flaring anything high in nitrates or fiber is especially painful and I get incredibly vitamin deficient B12, D and iron in particular. If I were you, I'd definitely get a second opinion from a GI.
  • littlelu222
    littlelu222 Posts: 37
    That actually sound quite a bit like irritable bowel syndrome, unless you and your doc have considered that and already ruled it out? What they used to call 'spastic colon' is now part of the irritable bowel syndrome collective of symptoms/descriptions.

    Ask your doc if this could be your problem. There are some meds that help regulate the motility of the colon that can help.

    Yup. Doctor didn't really think that was it, but gave me some prescriptions; none of them changed any of my symptoms though.
  • tchell99
    tchell99 Posts: 434 Member
    Definitely don't mess around with digestive disorders. One of my close friends actually died this way. She had Crohn's and colitis and was trying to be strong and push through the pain. She ended up in a coma for 3 weeks before her family took her off life support. Prior to this she had been stable for close to 5 years.

    So sorry about your friend, Zelinna.
  • xoalynnxo
    xoalynnxo Posts: 200 Member
    Hi. My name is Meg, and I joined on Monday. I have a lot of digestive issues, basically Chrohn's. I do not have Crohn's, but my body acts like it does. I can eat very little foods, especially veggies. I wondered if there was anyone here that has similar issues and if so, what you have done to improve. I am trying to follow the low FODMAP foods, and Paleo diet (about 90%).

    I have lost about 20 pounds since December, with most of that the first 5 weeks. I have slowed, and get discouraged sometimes. But, I am seeing loss in inches, and I am working out. So, I know it will kick back in, especially now that I am tracking my calories. I had a big aha recently, I wasn't eating enough. Whaaaaat? : )

    Thank you!

    Cuppy Meg

    Cuppy Meg! I think you may be my lady soul mate! 5 yrs ago I went to a GI dr with issues like Crohn's as well. I don't have Crohn's either but my body acts like it does. I was also diagnosed with gastroparesis a year ago. I'd love to get to know you better. I'm so sorry you have those issues but hearing you say what you did makes me not feel so alone. Friend me if you'd like to help motivate each other to our goals while dealing with similar issues. I've also tried paleo and low FODMAP

    Ashley
  • cuppycakesmeg
    cuppycakesmeg Posts: 10
    I am sorry for not replying in so long. I have since seen a nutritionist that says it definitely doesn't sound like IBS. she urges me to get a second opinion. My general doctor says it can still be Crohns. She has called in a referral for a second opinion. I am just waiting to hear from that doc about what type of appointment I need.

    I see my gynecologist tomorrow, as I am sure I have another adhesion on my intestines. I am in a bad way as far as that. Swelling in upper right quadrant of pelvic region. Same place and symptom as before. I about passed out Sunday when voiding. I almost went to the ER. I have researched and found an adhesive disorder, and wonder if this could be what I have. I am having to quit volunteer responsibilities due to my health. Things I love doing. I haven't been to the gym in 2 weeks. It hurts just to do laundry and dishes. If I do have an adhesion, the only way to know is through surgery. This makes it more likely to get them, but it is the only way I have found there is to treat the adhesion. I feel I have them in other areas too, and hope if I do they are found. I believe he will schedule surgery.

    I just want answers.

    Thank you all for your help and guidance.

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