the pain can be unbearable. I've lost 2 jobs because I've missed so much work. I've gained weight, I can't eat without feeling nauseous, I have not energy: I'm depressed. Between the pain and me feeling un-sexy (due to weight or diarrhea) my husband and I only have sex like once a week (we're newlyweds and before I was diagnosed we were intimate 2 or 3 times a day). This disease is ruining my life. That being said, I have a wonderfully supportive husband, an amazing 21 month old son, I currently have a job (and in this economy that's saying something), I'm working on getting my masters and pursuing my dreams, and most importantly I'm alive.
Jul 27, 2010
some help for the frustrations by: Anonymous
I was diagnosed not quite a year ago and have been lucky enough to avoid having to have surgery though I did have an intussusception. I've tried entocourt and azathioprine and finally found that humira works for me. The only problem being that soon after I learned this I lost my insurance and at $2500/mo it's not a drug that can be afforded without insurance. Luckly I found the humira patience assistance program. Here's a link for the application: http://www.abbottpatientassistancefoundation.org/pdf/HUMIRA_PAP_Form.pdf. Of course you should talk to your doctor about the appropriateness of this medication for you and your symptoms. Hope this helps.
Jul 24, 2010
Crohn's, weight gain, no diarrhea, but muscle and joint pain by: Anonymous
I had ONE episode of vomiting and diarrhea in December. I was diagnosed with "slight" Crohn's via colonoscopy in April. Take 150 mg of Imuran daily. I have gained 30 pounds since the diagnosis, have no stomach symptoms other than bloating. I have tremendous joint and muscle pain and have been down all summer. I teach and need to go back in 3 weeks and wonder how I can do it. Is this normal to never have diarrhea with a diagnosis?? to have the excessive pain and bloating??
Jul 22, 2010
Wieght gain by: Christina
OMG I am glad to find out I am not the only one.
I just was finally given a diagnosis of Crohns. I have had 13 surgeries in 6 years for bowel obstructions and intussusception. i had a gastric bypass 7 years ago and was down to my goal weight and looked great, then I started having these acts of horrible pain and most the time they would say everything was fine. Just had my 13th surgery in March and finally the Doctors decided to do a camera pill and found that my small intestine is Full of ulcers and that is been what causes my intestines to obstruct and stuff, anyway. when they told me I have crohns I looked on line and the first thing that struck me was everything said people lose weight or have a hard time gaining it. I told my Doctor Damn it why is that the only 1 symptonm I want to have I don't. It sucks I am back up to 200 lbs and I try so hard to diet and it will nto come off. But I guess now that I know why and I can get treated for it, maybe when my body can absorb some really nutrients it will be happy to let go of some of the extra. I HOPE SO anyway.
Jul 22, 2010
Wieght gain by: Christina
OMG I am glad to find out I am not the only one.
I just was finally given a diagnosis of Crohns. I have had 13 surgeries in 6 years for bowel obstructions and intussusception. i had a gastric bypass 7 years ago and was down to my goal weight and looked great, then I started having these acts of horrible pain and most the time they would say everything was fine. Just had my 13th surgery in March and finally the Doctors decided to do a camera pill and found that my small intestine is Full of ulcers and that is been what causes my intestines to obstruct and stuff, anyway. when they told me I have crohns I looked on line and the first thing that struck me was everything said people lose weight or have a hard time gaining it. I told my Doctor Damn it why is that the only 1 symptonm I want to have I don't. It sucks I am back up to 200 lbs and I try so hard to diet and it will nto come off. But I guess now that I know why and I can get treated for it, maybe when my body can absorb some really nutrients it will be happy to let go of some of the extra. I HOPE SO anyway.
Jul 22, 2010
Wieght gain by: Christina
OMG I am glad to find out I am not the only one.
I just was finally given a diagnosis of Crohns. I have had 13 surgeries in 6 years for bowel obstructions and intussusception. i had a gastric bypass 7 years ago and was down to my goal weight and looked great, then I started having these acts of horrible pain and most the time they would say everything was fine. Just had my 13th surgery in March and finally the Doctors decided to do a camera pill and found that my small intestine is Full of ulcers and that is been what causes my intestines to obstruct and stuff, anyway. when they told me I have crohns I looked on line and the first thing that struck me was everything said people lose weight or have a hard time gaining it. I told my Doctor Damn it why is that the only 1 symptonm I want to have I don't. It sucks I am back up to 200 lbs and I try so hard to diet and it will nto come off. But I guess now that I know why and I can get treated for it, maybe when my body can absorb some really nutrients it will be happy to let go of some of the extra. I HOPE SO anyway.
Jul 12, 2010
Crohn's Stress/Facebook by: Cheryl
Stress and weight gain all common factors in Crohns. I have recently found great relief from Facebook a site names Lets Talk Crohns and Colitis. Everyone bitch's. everyone shares it really helps. Try it.
For the record I can go from looking "normal" to 9 month pregorrs in no time.
Jul 11, 2010
Chrons and weight gain by: Anonymous
I`ve had Chrons for about 8 years now (and epilepsy) weight gain is my problem too , although its only my problem, my husband truly loves me the way I am , but I am human and do have "fat" days , I am only 5 foot and in my 30`s and to be honest its more worrying for me the fact that by gaining weight (even though I suffer diahhorea !?) it makes it harder for me to keep up with the kids and also I suffer awful anemia and beathing loss (agaim we know this is from the chrons) BUT it does worry me that the extra weight doesnt help my health...its a vicious circle is`nt it? I AM more than thankful to be alive and to be here with a loving husband and kids , but as I say we`re only human and its good to talk to other sufferers with the same weight gain problem as most people tend to think people with chrons are stick thin ! And when you try airing your feelings about the weight gain etc the general answer is "sure youre lucky to be alive"...we KNOW this ...anyway its LATE o clock so thanks for listening and good luck to you all :0)
Jul 11, 2010
Chrons and weight gain by: Anonymous
I`ve had Chrons for about 8 years now (and epilepsy) weight gain is my problem too , although its only my problem, my husband truly loves me the way I am , but I am human and do have "fat" days , I am only 5 foot and in my 30`s and to be honest its more worrying for me the fact that by gaining weight (even though I suffer diahhorea !?) it makes it harder for me to keep up with the kids and also I suffer awful anemia and beathing loss (agaim we know this is from the chrons) BUT it does worry me that the extra weight doesnt help my health...its a vicious circle is`nt it? I AM more than thankful to be alive and to be here with a loving husband and kids , but as I say we`re only human and its good to talk to other sufferers with the same weight gain problem as most people tend to think people with chrons are stick thin ! And when you try airing your feelings about the weight gain etc the general answer is "sure youre lucky to be alive"...we KNOW this ...anyway its LATE o clock so thanks for listening and good luck to you all :0)
Jul 02, 2010
crohn's and weight gain by: Anonymous
35 years old and I was diagnosed with crohn's last year. never had any trouble with my weight until after going into surgery and having about 2 feet of small intestine removed. since then (and being on and off of steroids) I've BLOWN UP. I hate to say it, but it kind of makes me feel better that I'm not the only one with crohn's that is dealing with weight "gain" instead of "loss". I couldn't help but think, "Just my luck, I'm plauged with a disease that is notorious for making people lose weight, and I seem to have the opposite problem". I'm 5'6" and over 210lbs. the biggest I've EVER been in my life. don't get me wrong, I'm thankful to be alive. but with the CONSTANT diahrea and malabsorption issues that I have, how the heck am I gaining so much weight???
Jun 17, 2010
At last! by: Anonymous
I was diagnosed with Crohn's 4 yrs ago. Since then I have gained 50+ lbs. Of course, I have lost 20+ lbs three times during flares . .. and gained it back. I do not understand why with all the diarrhea I have I can manage to gain weight. Nonetheless, I have joined Weight Watchers and started losing weight by strict calorie counting. It sucks, but it's working for now. For me, Crohn's is frustrating but a reality that I have to live with and learn from. I think the best advice I have is keep learning from doctors and from people who suffer from it about what works for them. I have hope that I will eventually find the diet, exercise, and medicine that will work for me! Peace and good luck!
Jun 10, 2010
diet by: LindaLee
Heh Everyone, I was diagnosed 2 years ago with Crohn's AND severe destructive ulcerative colitis. ALL the meds they gave me made me sick to my stomach except Cholazal. But, what has been my life saver is the IBD diet written by Carol Sinclaire. It has literally saved my life. If I do not eat wheat, potatoes, rice any grain or ANY flours, especially gluten-free ones, I have no diarrhea and no pain. I will admit that I miss cakes and pies and spaghetti and bread and the list could go on forever, but the pain is not worth the cost. I eat meat and vegetables, fresh fruit and a lot of salad. I eat salad dressings I make myself and I am willing to share any information with anyone that needs help. Trust me, I know the horrible pain and the way you seem to become a walking disease not a person anymore. I began to hate myself and waking up every morning. I experience severe muscle pain during a flare and can barely get out of bed. I am in a flare at the moment for no other reason then the fact that I cheated on the diet. I went off my medication, which was greatly reduced from my getting so much better on the diet, and I went nuts. I ate everything I was not supposed to eat. Stupidity is not erased by taking medication, unfortunately. I chose a Big Mac to traveling, a piece of red velvet cake to getting out of bed pain free. They have names for people like me. Unprintable ones. So, next week I am in for an emergency colonoscopy and endoscopy because my flare is so bad. Never again folks. So, if I make it through this one, you are more than welcome to ask me anything you want, I can help with menus and recipes and time. I will have a lot of it on my hands the next few months unfortunately. Good luck and fight the good fight. My email is : shoes333@hotmail.com
Jun 08, 2010
To Reenie by: Anonymous
My daughter was diagnosed with Crohn's 3 years ago-no meds helped and I mean she took them all including Remacaid-she had to have surgery due to ruptured bowel, had to have temporary iliostomy and was then reversed. Funny thing is, she was a lot like you-being only 25 years old, the idea of living with a bag totally made her sick. However, after the reversal, and until she actually was started on meds that actually worked for her, she felt so much healthier with her ostomy than without it-no more pain, constant flares,etc. What I am trying to say is that if the worst thing you can think of is having an ostomy, it isn't that bad. Hardly anyone even knows you have one, you can do anything, even swim. My daughter is now on injectable meds for her Crohn's-you should stop blowing off your doctor visits and look into Humira injections. I don't suggest Remacaid-it's a nasty drug.
May 28, 2010
misdiagnosed for 20 years.... by: Reenie
Hi,
I am 43 and was diagnosed with Crohns Disease while going through a bad divorce 9 years ago. I was on Pentassa, entocort, etc. Nothing helped. 5 years ago I had surgery and they removed 18" of my small intestine. I was good for 2/3 years and have since started having flare ups. I am under a great deal of stress constantly and there never seems like there is an end to it. I live in the bathroom as I have constant "runs" throughout the day. An average for me daily is 15+ times a day. I have not lost any weight. As soon as it comes out, I eat again and the cycle begins. I work 70+ hrs a week between 2 jobs one of which I bartend part time. Dating? I don't even want to go there. How do you explain this to someone???? Most guys don't want a "sick" girlfriend/wife so I think mentally as soon as someone is interested I find reasons to push them away. Anyway, back to the point. I just feel like I cannot deal with this anymore. the thought of living with a bag terrifies me. I like many others have clothes in my closet from a size 3 to a 14. I am 5'6 in height and have a medium build. I blew of my last appt 3 months ago with my GI as I just cant bear to go through another colonoscopy, endoscopy (I also have barretts esophagus), etc. I am tired all the time but I find the energy to do what I need to survive in this tough economy. When does it get better??? I would love to try remicade, etc. and some of the other drugs out there but I smoke (I know bad, have been dealing with cervical cancer issues (cinIII) but had surgery to remove the cancer cells and I know these drugs can revive dormant cancer cells in the body and cause other diseases (last thing I need!). I also blew off that appt in sept. I just feel like I would rather not deal with doctors, meds, etc. I have a 19 yo son who is my world and I want to be here to see him have a family and succeed at what he chooses in life. I'm just tired, frustrated, I feel beat up. I know eventually I will pull it together as I have always been the "strong one", but sometimes it would be nice to have a stress free life...I feel for everyone out there who suffers from this disease...especially the very young. Well anyone who has any of the symptoms I have (constant diahrea,bloating,bleeding, etc.) please let me know what works for you. Right now, my flare up is bad. I am so hungry I could eat everything in sight, but am doing nothing but liquids to try and give my body a break...that isnt even helping. I am living on immodium every day and that lasts about 6 hrs and it starts again.....I haven't been on meds since my surgery 5 years ago and for awhile felt alot better. The pentassa made me feel sick and the entocort I gained weight. Why cant they come up with a cure for this dibilitating disease????
May 17, 2010
Hope by: Amanda
I have had Chrons since 2006 I had to have surgery and almost lost my life because of this disease I literally was given 3 months to live if I didn't have surgery, that being said I have thrived since then. I am currently on NO medications which all my doctors said I couldn't do and I am in control of my life. True I still have issues from time to time but I WILL NOT let this disease take me over. I have a disease the disease is not me. I had a beautiful baby girl in July of 2009 which I didn't think possible and she is healthy and amazing. During my pregnancy I didn't have a single chrons symptom and could eat anything I wanted it was wonderful. I watch what I eat and try to be as positive as I can. Some days are harder then others but I know I can do this and so can anyone out there. A lot of this disease is mind over matter, when you start to freak out and you can't find a bathroom (which has happened to us ALL) I have been able to calm myself down and have made it. Meditation and knowing yourself is a big thing if over coming the mental stress of this disease. There was a point in my life when I feared I could never leave the house again and that's when I realized I was letting this disease win and I said no more. If ANYONE ever needs to talk or needs some inspiration please email me, you are not alone.
-A adevineluv@yahoo.com
May 17, 2010
Hope by: Amanda
I have had Chrons since 2006 I had to have surgery and almost lost my life because of this disease I literally was given 3 months to live if I didn't have surgery, that being said I have thrived since then. I am currently on NO medications which all my doctors said I couldn't do and I am in control of my life. True I still have issues from time to time but I WILL NOT let this disease take me over. I have a disease the disease is not me. I had a beautiful baby girl in July of 2009 which I didn't think possible and she is healthy and amazing. During my pregnancy I didn't have a single chrons symptom and could eat anything I wanted it was wonderful. I watch what I eat and try to be as positive as I can. Some days are harder then others but I know I can do this and so can anyone out there. A lot of this disease is mind over matter, when you start to freak out and you can't find a bathroom (which has happened to us ALL) I have been able to calm myself down and have made it. Meditation and knowing yourself is a big thing if over coming the mental stress of this disease. There was a point in my life when I feared I could never leave the house again and that's when I realized I was letting this disease win and I said no more. If ANYONE ever needs to talk or needs some inspiration please email me, you are not alone.
-A adevineluv@yahoo.com
May 05, 2010
Life with crohns by: Long term Crohns patient
Look folks we don't have it good sometimes and others it is just plain bad - it helps to see there are many more exhibiting the same symptoms. Since 1981 I have had so many surgeries I cannot even remember them all, funny thing is only one could I say was definately atrributable to crohns. I have been on many drugs but not the heavy duty ones. That may end soon though. I had to start on Pentasa again and still have not lost the 60+ pounds I put on with it last time. And don't even think you can get that weight off quickly either!! Hows about this one, I had an ankle replacement and had to be off my feet for 6-8 weeks, try hopping when things are happning!!!! UUGGHH, But I have to look at things realistiscally. I have a leg to walk on, I can get better and some may not be as fortunate. When I see friends who have termainal cancer with no chances, I thank God I can deal with this. There is always someone else who would love to be in your place, think of that when it gets bad and remember you are the only one who can truly make you better. I always go with what works, and soon it does.
Apr 18, 2010
Frustrated among other things by: Anonymous
I've had Crohn's disease for a little over 6 years and so far its been a rollercoaster. I had 2 surgeries when I was first diagnosed, and since then I've just jumped from medication to medication. I used to have no trouble with my weight gain, but now that life has settled down a little bit and I'm less stressed, plus on medication that makes my Crohn's 'less aggressive' I've put on about 25 pounds I just can't seem to lose. I still have watery diarrhea as well as constipation, cramping, bloating, and severe fatigue, as well as aches and pains everywhere. All my labs look good, as well as not being able to find any active inflammation, so the doctors look at this as a good thing, but I'm so frustrated about the weight gain and still feeling so uncomfortable. I feel that it is the medication that is making the weight stick (Cimzia) but I'm afraid if I stop taking it, I'll have a relapse. My disease at one point was so aggressive, the doctors didn't know how to treat it and were out of options. I don't want to be there again, but also don't want to be unhappy and miserable at the same time. I just don't know what to do anymore and the doctors don't seem to think the weight gain is a bad thing. I've already changed my diet and exercise habits and no change. I'm just sick of having Crohn's and dealing with the medications and everything else on top of it, as I'm sure most of you are too. Good luck and God bless.
Apr 07, 2010
Dear Morgan by: Anonymous Chronie
I understand your frustration and you did the first step by searching out forums and posting. Encourage your parents and all around you to find out more about Crohns so they understand what you go through. OR print some information out for them to read. I would suggest you keep searching and find out all about Crohns from all legit Crohns forums and sites. You will see that many have had such a problem starting at a young age as you and even younger as I have had. Losing weight at times of flare ups was very common for me. I have just taken steps of finding out what foods seem to pain me more and tried to stay away from such during any particular flare-up. I found that corn, pop corn and lettuce was like rasor blades to my gut for most flare-ups. Fiber of any type at times was horrible so I resorted to eating mushed up stuff that is similar to baby food. But something like a banana was not so good either. I had to keep sorting out foods that were a little easier for each flare-up, since that seemed to have changed many times for me.
And I am over the age of 60 now.
Please be careful as not to live it up to too much sympathy though when you do find some. I found I had to face the facts and live like it's a normal part of my life. Do find a specialist that will understand and well educated for your specific problem.
I sure hope that you will get some help and understanding from all angles to help you live as normal part of your life as possible.
Apr 06, 2010
Just found out. by: Morgan
I just found out the summer of 09 that I have Crohn's. I am only 13 and already it has been hard. I am struggling to gain weight and it seems every time I do, I lose it. I don't know much about this disease and I am really frustrated to find answers to everything. The hardest part of all this is my family doesn't know the pain or the saddness I go through.
-Morgan :)
Apr 06, 2010
Just found out. by: Morgan
I just found out the summer of 09 that I have Crohn's. I am only 13 and already it has been hard. I am struggling to gain weight and it seems every time I do, I lose it. I don't know much about this disease and I am really frustrated to find answers to everything. The hardest part of all this is my family doesn't know the pain or the saddness I go through.
-Morgan :)
Apr 06, 2010
Just found out. by: Morgan
I just found out the summer of 09 that I have Crohn's. I am only 13 and already it has been hard. I am struggling to gain weight and it seems every time I do, I lose it. I don't know much about this disease and I am really frustrated to find answers to everything. The hardest part of all this is my family doesn't know the pain or the saddness I go through.
-Morgan :)
Mar 25, 2010
One can be misdiagnosed many times over by: Anonymous Chronie
I am an older Crohnie. Had a resection in later years. Now am using just Pentasa. Been misdiagnosed many times over which is bad for controlling crohns. If I had been scope tested in the first place when I was in the teens then all might have been different. But then in olden days they did not know much about Crohns so maybe it might have even been worse. Been now diffinitely diagnosed with Crohns for 32 years and am still fully employed.
What was considered Celiac at some early years was just intolerance and intolerences can come and go specially when one has flare-ups. With the medications, I have had incidences where one medication was not working then later it did. I had to resort to big time investigation of which GI specialist was interested in Crohns more so then just saying things off the wall or prescribing things that works for one type of Crohn's patient and not for another. I have gotten to know over the years of which specialist knew more about fistulas, etc. I have crohns from mouth to end when it does flare-up which now has been ok since the resection in 2002. I had gained weight at times and lost too much at other times. We need fiber even if have to mush up veggies...eat baby food if you can but do include veggies. Some Drs told me to eat fibre in the regular form but oh boy at flare-ups it was all like baby food for me. Exercise is a must, and try to keep away from stress or over thinking things about Crohns. I also have fibromyalgia and that too requires regular exercise and proper wholesome diet to have it controlled.
Mar 09, 2010
Chron's and Celiac by: Cindy Lou
I have known I have had Celiac for about 10 years, and 2 years ago I found out that I also have chron's. I dont understand how I have two diseases that are supposed to make you insanley skinny and I am a friggen blimp. I am glad to see I am not the only chron's sufferer that seems to gain uncontrolable weight.
When I have chron's flares I will go DAYS with out having a "movement" to the point that I get a fissure, and if you have had one of those, you understand how painful that can be. On top of not being able to "go" my belly just seems to get bigger and bigger, so I TRY to exercise. Exercise causes me such pain that I cant do it! Thus more weight. I feel so terrible about myself and that effects EVERYTHING that I do, ESPECIALLY my marraige. This is a horrible disease, and I wish you all well
Mar 09, 2010
Chron's and Celiac by: Cindy Lou
I have known I have had Celiac for about 10 years, and 2 years ago I found out that I also have chron's. I dont understand how I have two diseases that are supposed to make you insanley skinny and I am a friggen blimp. I am glad to see I am not the only chron's sufferer that seems to gain uncontrolable weight.
When I have chron's flares I will go DAYS with out having a "movement" to the point that I get a fissure, and if you have had one of those, you understand how painful that can be. On top of not being able to "go" my belly just seems to get bigger and bigger, so I TRY to exercise. Exercise causes me such pain that I cant do it! Thus more weight. I feel so terrible about myself and that effects EVERYTHING that I do, ESPECIALLY my marraige. This is a horrible disease, and I wish you all well
Mar 04, 2010
just feel horrible! by: Jessa
Yes this weight continues to be a problem and no one in my family seems to believe me. Oh well. My crohn's continues to flare up. I spent two weeks in the hospital in December for it was released and still feel horrible. The diahrea isn't the problem its the aching that is. My body just hurts. Everywhere! I continue to have a ton of gas but can't release it. I get mouth sores all the time. My vision changes often. I have severe headaches. I am very weak. Go through fazes of sleeping all the time and then not getting sleep at all. I just hate it! Anyone else fell this way?
Mar 04, 2010
Used to be small... by: Dan
Had Crohn's for six years, in that time I have turned from a 10 Stone average build into a 14 Stone monster. I hate my body now and am always ashamed. Been on and off steroids for years and now on azathropine. Nothing seems to help, the weight or Crohn's!
Mar 02, 2010
What can I do ? by: Tamika
Hi to everyone out there who's in my shoes I am 26 years old and its been about five to six months since I have been diagnosed with chrons disease. I am on several different medications I feel as if I am losing my mind. I have lost so much wait and now my stomach starts to expand and it looks like I am about five months pregnant, it hurts and I hate it I want to gain some weight back but I want to look normal and feel normal. I get tired of the how far along are you and that look like is she pregnant? What can I do?
Feb 27, 2010
fat and have crohns? HELP! by: sara
I am 31 and was just diagnosed with crohns and I am still gaining weight! I am only 5'1 and weigh over 180 lbs and still gaining. I am on Pentasa and if I eat anything.. including ensure I look like i am pregnant and I am sooo uncomfortable. 5 years ago I was a size 4 and now a size 16 and I have tried many diets and none have worked. I have no idea what too do and my doctor is not helping with any suggestions. I am at my wits end! I have noticed a few people with the same issue but didn't see any resolve to the issue.
Jan 31, 2010
Has anyone found a fix? by: Anonymous
Hi all, I was diagnosed with Chrons last year after dealing with flareups for 2 years prior. I was put on pentasa first along with bentyl. Neither worked for me and I am now on Apriso. I do not have any "common" symptoms of chron's. I have constant constipation, uncomfortable gas, and horrible bloating. Right before I was diagnosed I lost 30 pounds through diet and exercise. After I lost the weight I started to get the flareup and now I have put on 15 pounds. I am still exercising but nothing is working. I cannot eat any veggies or fruit. I feel bloated all day long and not being able to pass a bowel makes me very uncomfortable. Has anyone figured out how to lose weight with chrons? I worked so hard to lose my weight, I am miserable that each day I just get heavier and heavier. I do not eat bad food at all. Never eat fast food, small portions and exercise and Im gaining weight instead of losing. Can anyone give me some advice? HELP!
Jan 11, 2010
Gain Weight with Chrohn's by: Anonymous
Hi All,
I'm 30 and have had chrohn's since I was 10. The last few years were extremely frustrating and difficult as I was losing substantial weight. I was not able to stop my flare ups and it was looking like surgery was inevitable. Got down to about 140 lbs, where my normal weight was about 170. I had tried every treament available (asacol, azulfidine, pentasa, etc.... with little to no success. I don't even know how people take 8-10 pills a day, just a scam from the drug cos. I was about to give up and let them perform surgery when I started looking into remicade. I've been on that the past 6 months and my abcess has disappeared! I havent had one flare up since and I've gained approx 15lbs back through working out. I honestly can not remember what it was like to not have pain in my stomach! Its really been a blessing and I just hope it continues. Just want people to know that remicade really has worked for me, you just need to give it time to work through your system. Not one ill side effect either. All the best to everyone and good luck.
- Long Time Chrohn's suffer with new hope
Jan 05, 2010
Almost fed up by: David H.
Hello, I was diagnosed with chrons about 2 years ago. It started a year or so before that with a gradual loss of weight, since I was in college and broke I didn't think much of it. My first real issue came in the form of a rectal abcess. Worst pain I'd felt aside to a broken leg. Took a couple months, about 9 different doctors and a trip to the emerency room before I was referred to a GI specialist. A colonoscopy later I was told I had chrons and an abcess. Two of three surguries later my abcess doesn't come back too often but the flare ups aren't constant but it seems that way at times. I've had endocort, 6mp, pentasa, a few antibiotics, steroids, remicade and there's more I can't remember. I'm currently on 6mp, pentasa and remicade and yes it is horribly expensive somewhere close to 5 grand a pop, my insurance sucks so I have to pay nearly 500 per injection. After the injections I feel drained, when I get out of the chair i nearly fall over from the blood rushing from my head and am very weak for several hours afterwards. I'm not entirely sure the stuff works for
me, I'm tempted to keep a journal of flare ups but ignoring them seems to help them go away quicker, power of the mind... Right now it's 2am and I'm soaking in a hot bath because I'm having a real beast of a flare up since 10pm. It's getting old, for my 21st birthday I drank some of the most foul liquid imaginable in preparation for another colonoscopy. Cheers! It's frustrating, I can handle the pain of the flareups, it's the exhaustion and irritability that get to me. I've lost interest in almost everything and most of my hobbies seem like a fight just to enjoy them. A lot of you have had this way longer than me and it may seem I'm being whiney, I am, this is aweful, I've had a piece of gauze tucked in between my buttocks for over a year because my abcess has to stay open to drain, I probably spend less of gas than I do on guaze. I've read a lot of people stories on dealing with chrons and no one seems to have the exact same issues, it doesn't mean youre alone in this. Whoever reads this may say I'm being a bitch, or that I have it worse than them. It is what it is, a nightmare, I'm still waiting to wake up...
Jan 03, 2010
"external" by: Anonymous
My symptoms are different then the usual I pass a bowel once every 2 weeks if I'm lucky terrible joint pain eye problems and fatigue...I have gaind 30 pounds in the past year (not from medication) I've never been this heavy in my life. Because I don't have the disease traditionally and my symptoms are external the medication is worthless..I've never been over 110 pounds n now I'm fat. Idk what's worse never pooping or always..I never pass a bowel and it sucks
Jan 01, 2010
Rimicade 2 by: Anonymous
Also, I have been on 6MP and Pentassa, and neither have done anything benificial for me. If anyone is having problems controlling their crohns after being treated by a doc like i did, i beleive the main key is to live a stress free lifestlye, dont let work, family issues and other little things get to, ive found that high levels of stress cause flare ups.
Jan 01, 2010
Rimicade by: Anonymous
Im 19, i was diagnosed at 14, and i highly suggest the rimicade infusions, although they take a couple hours to get done they seem to work quite well for me, im supposed to have one every 6 months but its been about 2 years since my last. After your done with the rimicade you feel better somehow, more engergized, more healthy, and if your on the thin side like me, it helped me gain some weight. One major downside to the rimicade though is that alot of insurance companies wont cover it and if you have to pay for it yourself, i was told it was something like 3500 but thats just what ive heard.
Dec 31, 2009
What about remicade? by: Anonymous
I have been on a roller coaster ride with the diagnosis of Crohn's. I had trouble for years and then finally found a GI that did the right tests to diagnose me. I am pentassa and endicort but it isn't helping. The doctor wants to give me a remicade infusion and I have to see if the ins. will pay for it.If anyone has had the remicade infusions I would like to know if they really helped and how many do you have to have before you see results. My weight seems to be nothing but gaining because of the steroids. I have joined a gym but half the time I don't feel like going. but i am going to have to learn to go. i would like to know if the remicade has helped any since what the dr. is given me stuff that doesn't work
Dec 22, 2009
Weight gain and prominently constipation by: Cindy
Does anyone else have chronic constipation and not diarhea. My stomach almost always looks like i am 6 mos pregnant and i have to take a ton of miralax and enemas to go to the bathroom, yet they say i have crohns..How many of you have had that? Any answers woold be appreciated!! Happy Holidays to all and thanks in advance. ;-)
Dec 14, 2009
My life part 1 by: Anonymous
I'm 22 years old and have had crohns disease for just over 12 years.
It started in 1997 as severe cramps in my stomach area which had me doubled up on the floor in pain. Soon I started loosing my appetite which had always been good in the past, and loosing weight. All this started happening when I started secondary school which made the whole experience even more difficult what with puberty as well I had a really hard time adjusting. My weight dropped off drastically and for the first 2 or 3 years my mum took me to doctors, herbalists, and church (she’s religious)
after a while the doctors diagnosed my with crohns disease and started me on a milk based liquid diet that lasted months. It turns out that milk and dairy products is what made my illness flare up so that did no good, just made things a hell of a lot worse.
At my lowest point I was 14 years old and weighed under 6 stone. My growth was permanently stunted and remains so to this day. After a few more years and a few pills (asacol and azapheropine) also numerous stays in hospital with months or liquid diets (Elemental o28) thru a tube in my nose. This happened about 1- 3 times a year. I became stable and my illness started to ease up. I put a little weight on but never had a great appetite. Soon my lifeline came along in the form of prednisalone (excuse my spelling) which I started taking in 2002 and apart from the moon face everything was great. I put on mass amounts of weight, so much so that my family had to comment on it being too much an much to my amusement my teachers didn't recognise me since I had been away on summer holiday. No one recognised me, I was transformed and was the healthiest id been up to that point. Happy, and full of confidence I had a new lease on life. 2003 I started taking elemental 028 drinks thru my nose at home full time. this continued until November 2005. Continuously! because of deteriating health again I was put on prednisalone around September 2004. This time the side effects began. Psychosis. prednisalone (1 tablet a day)for just over one year! due to my doctors advice which is crazy because it should be taken for about 6 weeks at most. I thought I was going mad and had no idea it was because of the pills. My life changed for the worse.
Dec 14, 2009
My life part 2 by: Anonymous
I was mad. literally. drinking, taking drugs, failing at college and worst of all. Terrified. All the time. day and night, anxious, paranoid, fear of the outside, fear for no reason at all. the drugs and booze helped, I was suicidal. it didn’t end for a second. in 2006 I realised it was a side effect and stopped the pills immediately. I no longer trusted doctors and didn’t go back again for many years. in this time due to continuous scarring I developed strictures. these got so ad over the next year or so that I spent a year eating only 2 fried eggs for breakfast and 4 elemental o28s a day which I could only have with a gap of three hours in between each one and only one mouth full every five minutes! its crazy I know but thru trial and error I found that was what worked. it was the best I could do because if I ate more, or faster or with less of a gap of drank more then one mouth full before the last one had worked its way down a little then I would get an obstructions and would endure the worst pain I have ever experience or could imagine. a blockage is excruciating and my first one lasted 6 hours continuously with no let up. I took over 4 pain killers in half an hour to no avail. I went back to hospital for the first time in years and was put on morphine. no help. I wanted to kill my self. it was unbearable as anyone whose had one will no. its a miracle I never burst or ruptured. its stopped eventually but I had at least 30 more between 207 and my operation in Jan 2009. its was a constant fear of pain or bloating or if I was lucky just throwing up. I finally decided enough was enough after weighing nearly 8 stone at the age of 21 and returned to hospital and saw a doctor. I the stricture removed in Jan 2009 which was so narrow not even liquid could get thru with our becoming obstructed and I am now in the best health I have been in my entire life. I am finally close to being 'normal' for my age weight wise.. well imp nearly 9 stone and that’s the best vie ever been. the damage has been done. imp small for my age and always will be. I still have a limited appetite and have to space 3 small meals out during the day with 2 elemental o28s in between with 3 hour intervals in between each one. I still let twinges and live in fear of the inevitable. my illness coming back. as it does in everyone with this illness. imp waiting for that blockage again. on top of that I have never been back to 'normal' mentally. imp still agoraphobic and anxious at times, no self confidence and have body image issues. its been an awful 12 years and I wish I’d never been born most of the time. vie had enough pain and suffering and live in fear of more. I even find it hard to hold down a relationship due to my anxiety and fear of public spaces. good luck to everyone with this illness. Sorry this was so long.
Nov 20, 2009
Big belly/healthy eating by: Cheryl
No I NEVER want to give up and have a bag. Not for a second. Don't give up the fight. What is with these Doctors and there need to tell us to eat healthy? Salad, kills me as do most veggies. Fruit juice no way. How I would love to just peel an orange or have a grapefruit or an apple. Whole wheat bread? Not in my stomach. What is healthy eating for a person with a "Normal" stomach is not healthy for me. Maybe you should see what upsets your system and steer clear of the "Healthy Eating" that may be blowing up your belly and causing what I call swelly belly. I can go from my avrage size to looking 9 months pregnant after eating something that is not good for me. There is no set diet for Crohns. But I keep at trying to find what works for me. Good luck. I just keep 3 different size clothes around. lol
Nov 20, 2009
UGH by: Lindsey
I was glad to come across this comment section as I was DX in 10/05 with Crohn's. They had no clue until I needed Emergency surgery which led me to a bag for several months. I had the bag removed in 06, and have been on a cocktail of meds since (6MP, Asacol, Pentassa, Prednisone, Remicade...) I have never been tiny, but I was a healthy weight. I have gained 160 pounds since my reversal, and all I get from the doc is "I do not understand why you are putting on so much weight...you need to try to eat healthier..." I get such a sick/full feeling and lots of reflux when I eat, and it just gets worse throughout the day. I have an appointment today with my new GI guy (2nd visit with him). I just get so sick of taking 48 pills a day, and infusions Q6W. I am only 31 years old I have 5y/o twins, and I cannot even really enjoy playing with them. I am sick & tired of being sick & tired. Don't you ever just wanna give up...maybe have them take it all out and be reliant on a bag for the next 50-60 years?
Nov 15, 2009
Weight!!!!!!! by: Liz
I have read all of the comments on here and I am shocked to learn that the majority of women have the prego belly look like i do! Why dont any of these doctors know what is causing it? And if they know it's medicine, then why are they saying that we need to excercise more and eat better? It is very difficult having Crohns in the first place, but to also deal with being a huge person on top of it-IT SUX! I hope in the near future there is a treatment that will serve us all well, but in the meantime just hang in there everybody!!!
I am curious to know what medicines we(the big bellies)have in common! I take remicade infusions every 8 weeks and asacol and entocort everyday.
Oct 21, 2009
Hi Coleen. by: Jessica
Coleen,
We are all here for you. Don't beat yourself up about this weight issue. I know we all do, but together we will get through this difficult time. Keep your head up.
Oct 21, 2009
Hi Coleen. by: Jessica
Coleen,
We are all here for you. Don't beat yourself up about this weight issue. I know we all do, but together we will get through this difficult time. Keep your head up.
Oct 21, 2009
Weight gain by: Colleen
Hello, im 26 years old and ive had Crohns disease for nearly 4 years. In the begining i lost so much weight, i couldnt eat, always felt sick, people thought i was anorexic, even my aunty thought i was! but now ive put on weight, my belly is huge, i look pregnant. I thought i was the only one but after reading other peoples comments i now know that many people with crohns disease are going through the same. It really gets me down, and getting comments from my boyfriend about how fat i look doesnt help. Im really depressed, ive even been suicidal :( but im just so glad i came across this forum, its nice to know that there are people out there who DO understand.
Oct 17, 2009
BLOATED BELLY----HELP!!!! by: Tammy
I was diagnosed with Crohn's about 5 years ago. I have constat chronic diarrhea. Every where I go I know where every bathroom is I cant drive 10 miles without stopping to use restroom. my Stools sometimes have alot of blood and some stools are full of mucus. just over the past month every time i eat my belly swells up and i look 8 months pregnant. after a few hours it will go down a little. when I eat sometimes after 3 bites I start cramping so bad i cant eat. My weight is crazy last year I weighed 98 lbs now i weight 140 my weight goes up and down and its very frustrating!!! Anyone have any help???
Oct 16, 2009
Living with Chrons' by: Survivor(orangemound,tn)
hi all, Well were do i begin. It's so encouraging to see people who are out there going through the same things that i am or have been. I am 25 years old and have been living with chrons for most of my life. it begin with me when i was only in the 2ND grade,for years doctors didn't know what the problem was and was just diagnosing me with any and everything but Chrons disease. It wasn't until i turned 9 that i was officially diagnosed. I've been through it all: The weight loss,the bloody stools,the sores on my hands and feet, severe arthritis in both knees,hips,and hands,Swollen ankles,Gas,bloating, stomach pains Several blood transfusions and several tube feedings. I was home schooled off and on because of it and as an adult, I'm finding it much harder to deal and try to succeed in college/the real world.For awhile i wasn't able to swallow foods, i always had to strain to get the food down. in 2006 i found out that the reason behind the throat issue was due to the chrons disease and I've had two surgeries since to dilate my throat.Recently,i had gotten to a point where my body just couldn't make it anymore and it begin to kinda shut down on me. With the help of my family and those friends who do understand the disease, Ive been able to kinda make it :) I'm starting to experience and different symptoms.in the past 7 months I've gained 35 pounds,but it's really all in my stomach, no I'm not pregnant, but if you look at me you might think so lol it hurts sooooo bad and I'm very bloated so to speak. I'm only taking asacol 9 times daily and taking my ferrous sulfate. however I'm still bleeding. this is very new and scary for me....
Sep 16, 2009
Tired of weight comments! by: Jessica
I was diagnosed with Crohn's last Oct and have exceeded the weight I was at for so many years. I have gained a horrid 30 lbs. And feel like a blimp. I have tried dieting, counting calories, cutting out fatty and fried foods, exercising daily and yet all I have done is continue to gain weight. I am now to the point that with every comment family or friends make about how huge I am I just want to crawl into a hole somewhere. I am just so unhappy. I continue to have flare ups, tons of bleeding, nausea daily. My body just aches, constant headaches, my eyeballs hurt too ugh. I just don't understand how Crohn's can affect so many other parts of your body. Soooo today I came upon this site found that other are experiencing the same issues and was actually happy. So sad to be happy that others feel as horrible as I do. And I am so sorry for all blown to shreds by this disease.
Sep 10, 2009
swollen belly & weight gain by: Anonymous
I continue to look pregnant even though I always had such a tiny waist before. I was always pear shaped with larger hips/thighs & great abs. Not anymore :( I keep asking doctor's what is going on with my body & one said "I wish I was that swollen". They say I look perfectly normal & don't see what the problem is. Throughout the day my stomach just gets more distended. It is very uncomfortable. I also feel like I am filling up with fluid in my whole body especially lower body. I feel tingling in my tissues, my skin gets tight, and my shoes get tight. I also have trouble breathing when I wake up like fluid on my chest. They have done numerous tests and say their is no fluid. After eating I have trouble breathing. My stomach has so much pressure and I guess it is pushing on my diaphram. I keep gaining weight. oddly enough prednisone actually seems to help with the fluid a little if I take it a few days. I am a personal trainer but I just keep gaining weight and working out is uncomfortable. It is very depressing & I feel that clients will not want to work with a trainer that can't control her own weight. No help from any doctor's they just make me feel crazy. I also just read that Remicade can cause weight gain. Does anyone have any suggetions????
Aug 29, 2009
hopeless! by: Anonymous
nine years with crohns hate my belly don t mind scare from op,just cant wear nice tops tired sit-ups just sore cant do it but then as much as it annoys me at times iam lucky to be alive and i just tell my-self some poor auld divel is out there ten time worst so i guess i just go with the flow xx
Aug 29, 2009
hopeless! by: Anonymous
nine years with crohns hate my belly don t mind scare from op,just cant wear nice tops tired sit-ups just sore cant do it but then as much as it annoys me at times iam lucky to be alive and i just tell my-self some poor auld divel is out there ten time worst so i guess i just go with the flow xx
Aug 24, 2009
Crohn's by: baffled
Im 24 and have crohn's, i tend to have a stool but i can't do anything to prevent my bleeding. Everyday is the same nightmare and i lost tons of weight. I want to gain it back and i just don't know how. i take 8 asacol pills a day total. should i increase? any supplements to help me gain weight please help. thank you.
Aug 14, 2009
Weight gain by: Anonymous
Totally agree on this. I've been trying to lose weight recently and it's just not happening. Nice to know its not just me, but Crohns and meds may also be the cause - although it is a bit depressing but at least I've had no flares for a few months!
Jul 10, 2009
Give me a solution to gain weight by: Anonymous
Hi guys,
In my previous post, dated 11th June'07, I did ask for a solution. But no one is forthcoming.
I also mentioned about Megestrol Acetate as one
of the stimulants for weight gains.
I actually read about it in some other forum, where a couple of guys who is suffering from Crohn's were prescribed that and successfully put on good weight within 2-4 weeks. I thought I will get some positive response to that FDA approved, prescription drug in this form, which seems to be dedicated to Crohn's. But to no avail.
Can any one or atleast, the owners of the site / moderators of this form step in to help.
Thanks,
RSM.
Jul 07, 2009
trying to gain weight by: Anonymous
i have had crohn's disease for 3 yrs(diagnosed) now. i weighed 128lbs before i started steroids, i had reactions to the steroids and had to stop taking them. Now without any steroids i am constantly losing weight. i weigh 104lb now and i am very sick of looking at myself in this way. My doctor says i cant take the weight gainers in the GNC stores so i need to know what to do so that i can gain weight again. PLEASE if you know anything that will help Please let me know.
Jun 11, 2009
I need to gain weight guys by: Anonymous
Hi All,
Most of these posts talk about having more weight and considering it to be bad thing. But I was 70+ kgs 6 to 9 months back and now I am only 60 Kgs.
Every one who looks at me asks about what is the reason for losing so much weight and I can't tell them it is because of Crohn's. I have taken all types of treatment as per my Gaestro, but nothing
is helping me. I even tried herbal medicines as well
but to no avail.
Can anyone share my experience and does any one has any suggestion to gain weight, upto the point of my previous weight(!). I saw from websites that
Megestrol Acetate is prescribed for putting on weight in those with unexplained weight loss. But my doctor has not prescribed this to me...
Any solution for me, please respond.
Thanks,
RSM.
May 27, 2009
I'm not ALONE!!!! by: Jen
So, for about two months now, I've had a really bad flare up with my "Crohn's Colitis." I kept telling everyone my belly is swelling to the point where sitting is so uncomfortable. It's as if my belly is in it's own way. I'm a fairly petite person, who recently lost a ton of weight, and within a month, it's like I put it all back on. So frustrating. But mostly uncomfortable, and terribly painful at times.
I'm starting to exercise, as oddly enough, moving around makes it feel a little better. I'm hoping it'll help.
Hmm, this baby belly business better get fixed soon!!!! Or else, I may need new clothes too!!!
May 01, 2009
No Answers by: Cheryl
I wish someone had the answers. I for one have not a clue. This is my 10 th year with this and I'm still confused at times. What to eat, what not to eat.???
Last night a had some fruit juice. Today I am a mess. Tummy pokeing out with the ole swelly belly and I just plain feel sick. Running to the bathroom every 20 min while at work is no picnic either. I should have known it was coming because I have felt pretty good for a while now.
Please pass on any tips anyone gets.
Apr 26, 2009
So no one has any answers? by: Belle
im reading this because i was looking on the internet for diets for those with crohns. i have had it for two years now and have been stick skinny up until now. i just got put on humira on top of taking 12 asacol a day, and my tummy is huge. im fine with weight gain everywhere else but my tummy, its disgusting. and im bummed to find there are no answers or responses to these posts. i exercise, but i cant have lots of veggies, and dont know what to eat to help me lose weight. and i started modeling, so i have to get this weight off asap!!
Mar 15, 2009
Crohn's Disease/Type 1 Diabetes-Weight gain by: Anonymous
My gastroenterologist has commented on my weight gain in that he thinks my Crohn's is not flared up because you are supposed to "lose" weight with Crohn's. I hurt so bad that I only eat after 5-6pm. I thought it could be eating so late. I also have Type 1 Diabetes and am petrified when I go into a "flare" as I have to somehow keep something in me to keep the blood sugars up. It is VERY hard. Does anyone else have both diseases?
Also, when you hurt every day, you realize that you have to eat something. I feel my doctor thinks you starve yourself with Crohn's or you are not sick. Sometimes I get so hungry I could cry and when I do eat I hurt even worse but I have to eat.
Feb 02, 2009
So glad I'm not the only one by: Anonymous
Although we don't know of a solution, there is some comfort in not being the only one who swells up during the day. It is REALLY frustrating. Take care, everyone.
Nov 23, 2008
too fat to move by: Anonymous
Hi everyone
I have had crohns for 10 years. I was finally diagnosed first part of this year. By this time my symptoms were so severe that I had to undergo
surgery. I weighed in at 16stone 9 pounds when I was diagnosed. I was on steroids for about two months and during this time I gained weight and shot up to 18 stone. I had surgery end of july this year and since this time I have continued to gain weight even though I have been trying to loose some. I am not on any steroids at present I only take questran to stop me going.Friday I weighed in at 19stone 4pounds sat I weighed in at 19stone 7pounds and sunday I weighed in at 19 stone 12pounds. I feel terrible I am so miserable I cannot exercise because I am soo knackered all the the time my knees hurt all my joints ache I feel like I am too fat to move.I feel like dying.
Nov 01, 2008
wieight gain by: richard l.
I have been lifting weight for years but when I had a flare up I put on 40 pounds and the only thing I'm losing is bleed and my mind. I still have not figured what to do about it.
Aug 30, 2008
I've gained weight too. by: Julia
I had been on steroids but it's been over a year. I'm on remicade now. I still have flare-ups but am heavy through the belly too. I've had many people ask me if I'm pregnant. I get so upset. I had started to think I was the only fat crohn's patient until I read some of these postings.
Aug 28, 2008
Weight Gain by: Cheryl
You are not alone! I go from a fairly normal size stomach in the early part of the day to looking from 6 to 9 months preagnant by the early evening. I hate it but have no answers. I do know that trying to hold it in hurts.
If anyone has any answers please fill us in.
Aug 27, 2008
Weight gain by: Anonymous
I am newly diagnosed (4 months) with Crohns/colitis and also have gained 35 lbs with some of the weight before steroids. I am a vegan and feel pretty lousy as the only fat vegan!
Jan 23, 2008
swollen belly by: Anonymous
I have had Crohn's for about 8 years and yes, my stomach goes from flat to swollen in a second! my coworkers actually laugh because they don't understand how I can do that. I'm a very thin person as it is, so it certainly makes me look prego when my stomach swells. I try not to eat heavy meals, as I've noticed that makes it worse. But even sometimes when I barely eat it causes my stomach to swell. Very uncomfortable. Glad I see others w/this problem, as I thought maybe it was just me and that maybe I'm gaining weight, etc...
Oct 30, 2007
weight gain too by: Anonymous
i have started to gain weight too since i was put on steriods. i have gained about 10 or more pounds in the last month. my doctor says it is the steriods making me gain the weight but i cant be off of them yet. i have tried to exercise but nothing is working.
Oct 24, 2007
Water weight, not fat weight by: Rachel
Between general inflamation and God-awful steroids, I have had my share of being "puffy." It really sucks, especially when I am having a not-puffy day and everyone oohs and ahhs about my "weight loss", but I try to think more about being kind to my body and making it healthy than what I look like on the outside. My biggest problem was that my face would swell.
Oct 24, 2007
Bloating by: Marilyn
Hi! I know exactly how you feel...in the morning my tummy is flat...each time I eat I bloat and before long I can pass for 6-7 months pregnant. It is very uncomfortable and painful and has necessitated a change in clothing style...i.e. stretchy pants, flowing tops, etc. I do not believe it is just fat...try seeing a Naturopath, and if that is out of reach financially go to your health food store and buy the best probiotics...this will help a little...
Oct 23, 2007
WEIGHT GAIN by: Anonymous
I was in hosp. the girl in the next bed had crohns and was very sick BUT she was about 80lbs and was not doing very will. I was thankful at that moment to be over weigth. I was haveing a bad crohns attact but even my GI said i was in better shape than the girl in the next bed. Haveing some extra weight to fall back on is a good thing.
Oct 19, 2007
Weight Gain by: Cheryl
Swelly Belly! I think that's what we should call it. Swelly Belly That's me. I went to my Gastro yesterday and he told me to try Yoga or Palloties? Hello what is palloties? How do you spell it? I'm willing to try anything at this point. But that was his answer. Besides he wants to add another pill 2x a day to my already 8 pentasa, 2 Levbid, and 3 Bentyl. I'm a walking drug store.
Oct 19, 2007
Your Not Alone by: Anonymous
Im pleased I am not the only one who looks like she is preganant because of swollen tummy. I even had a little old man help me with my groceries at the supermarket, because he said in my state I shouldnt be lifting heavy things, then he wished me luck with the impending BIRTH!!
i DIDNT HAVE THE HEART TO TELL HIM THAT the cause of my swelly belly is due to CROHNS.
Oct 06, 2007
33 and huge by: Tina
Hi
I am so glad that I have found this site. I have been gaining weight ever since I had my son 4 years ago and now I am over 100kgs. I hate my body and my husband just says I need to diet and exercise more. Because every one on the planet believes if you have crohn's then you must be stick thin with rotting teeth my husband and friends find it hard to believe my delema. Before pregnancy I was at a good weight. My crohn's though was really severe and would last up to 7 days at a time. I found the only releaf was to lay in a red hot bath and would do this for hours on end as the pain was unbarable. Most times I would pray to god to take my life as I couldn't bare the pain any more.
When my son was born it changed. Now when I have an episode it lasts a maximum of 4 hours and is so intense that I vomit at the same time. But I know in my head that after going twice that I will at least be able to fall into bed. I am so exhausted from it. The down side is the massive weight gain. I am not saint but I don't eat McDonalds and KFC. I eat 2 piece of toast with vegimite for breakie, salad ( I can tolorate it ) and veggie soup and dinner is chicken and veggies most nights. But I look like I live at the fast food joints. Is any one else like this or am I the only one?
Oct 03, 2007
Weight Gain by: Cheryl
I am so frustrated with myself because of my weight. As it is I am almost 50 (couple of months away) and I won't let this stupid Crohns get the best of me as far a getting out and doing things. We stay pretty busy. But I always fell like the big fatty every where we go. I dress like a frump. Just to try to hide my bif belly. Some day's I don't ever eat. No appitite. I 've had to give up coffee in the mornings, don't eat breakfast either cos that would make it hard to leave my house. Thank goodness my husband and I are self employed so if I am having a bad day I can just go home. Fruits, veggies and salads just tear me up. I'm a little sick of chicken breast, but no matter what I do even with excersise I'm fat! With bird legs!
I wish someone could come up with an answer.
Cheryl
Oct 02, 2007
Too fat by: Anonymous
I wold like to know people's opinion on this also because ever since my resectioning a year ago, my weight has gone up tremendously!!!! I was diagnosed with Crohn's in October of 2005, put on Steriods and various courses of med, continuing on steriods on and off (more on) for the next year and in August 2006, I had my surgery. My appetite comes and goes, and I have not quite found what my "trigger" is for what does not agree with me. I am also having liver issues, that have been ongoing since March. I am sick and tired of feeling like this, but even more so being 40+ pounds heavier....I feel like I'm the only"fat" Crohn's patient>>>>
Oct 01, 2007
Weight gain by: Cheryl
I don't eat that much. Can't deal with salad's. Although I love to eat salad's they don't like me. I end up awake and in the restroom all night. How do we loose this big pregnant looking gut and diet?
Sep 30, 2007
weight Gain by: Anonymous
My e-mail address is Biteme987 -at- aol.com. Would like to discuss this but the cut and paste thing is just a pain in my whatever. Cheryl
Sep 29, 2007
Finally someone like me by: Haley Miller
Yes, I have also had this problem of gaining weight and looking pregnant...I have no idea why this is and I asked my doc and he doesn't have any answers either...Its nice to know I am not the only one though
Sep 27, 2007
Is that a baby in your belly?? by: Pooper
With the thought that everyone is different and react differently to things, ive learned that for me, it works when im in the swelling phase to stay away from meals and rather eat small doses all day long. The swelling stays to a minimum and im not as miserable. Ive read that getting into that habit actually kicks up your metabolism ~ i need all the help i can get!
Meats seem hard for me and i usually avoid beef unless i just cant take it anymore ( i have a weakness for juicey cheeseburgers ). Im swollen right now and what i could wear on monday, i cant today. I have so many different sizes in my closet for all my many "phases".. my husband accuses me of finding excuses to just biy more clothes :-)
Ive actually had a little kid ask me if i was pregnant once. How depressing that was!
Sep 27, 2007
Any answers? by: Anonymous
Just how do you control weight gain?
Sep 26, 2007
prego? by: Gin
Yes, I do agree... with the swollen tummy from the steriods and the crohns - I look prego all the time. Additionally, I tend to hold my tummy as it hurts so much, for me sometimes holding it or rubbing it helps... and well that makes me look even more pregnant.
