Crohn's and Colitis?
 

I so I have had a really bad flair up over the last few months and finally am feeling better.
I have always been a fat Chronie even in the worst of flair ups I never lost a lot of weigh.

In the last year before my flair up I was able to drop 30 lbs (yeah) but since being back on meds (6MP and pentasa) I gained back 4 and I can't seem to lose anything. I work out every day, keep my calories around 15-1700 which is what I lost on and I have a caloie deficit daily of at least 500 calories (1lb a week). I am afraid to drop my calories much more since

just venting as I think my meds are trying to get me to gain weight and all I can do is maintain. I really want to take off the last 15 (now 20) but I am not sure what to do. Any others trying to diet on IBS, chron's/colitis drugs?

Hi owned by Dixie I also have Crohns Disease. I'm sorry you are having weight issues. I truly know how you feel.
I have had Crohns for 20 years. I will be 49 in a few weeks. I also have been an overweight crohnie. Years ago I weighed 250. I was so sick with the Crohns I could not eat. I lost down to 140. Then Crohns was discovered. My doctor started me on prednisone. By the time I was able to come off the pred. I weighed 260+ From that point on everytime I would try to lose weight no matter what I did the scale just would not move. I also have had a complete hysterectomy. I thought not being able to lose weight was because of that and not the Crohns.
Earlier this year I changed GI doctors. She was questioning me about my diet. She ran complete blood work on me. She found out I had an inactive thyroid. Hypothyrodism. She started me on the replacement medication. I lost 8 lbs. almost immediately. That was June 2010. I decided to start counting my calories (I do calorie cycling). I have lost 47 lbs.
The Crohns is still a daily problem but I will keep working on this weight. Do you think it could be a possiblility that your thyroid is inactive? Maybe you could have your doctor check. I wish you success in your weight loss:) And I hope your Crohns gets under control by your meds. Isn't this a horrible disease!? I hope they find a cure soon!

thanks for answering me!
I have had Chron's colitis for about 25 years. I have been lucky to not have any surgery or strictures so knock on wood!

the meds help and no, my last thyroid test was normal. I too count calories and just can't seem to lose right now (160) I would like to get to about 145 eventually if it happens but I think my issue right now is B12. Dr. is running the test today.

Anyway, I did find a great community at healing well, check the out if you are looking for support. I was just hoping to find others with weight issues and Chron's.

Be well, welcome to the boards and good luck in your WL journey!

L ~ what is the name of that HEALING WELL site? You can just write out the name of the site like this ... Healingwelldotcom, if needs be. I am interested in what they have to say ... thanks!

BTW, at only 160 lbs, you are doing well, if you only have 15 lbs left to lose; maybe just up your exercise a bit each day becuz everything else sounds fine ... :)

yes I love the healing well website. Just want to be healthy...you have it right in your post. It made me realize there are so many people dealing with this illness. L...I also have B/12 issues. I use the nasal B/12 spray. (one less pill) I wish you good health:D

www.healingwell.com
they have a ton of sub forums depending on your issues.
I would love to up my exercise. Actually my goal is to able to jog. My problems are that I spent a lot of years on prednisone and I am always anenic so exaustion is a big issue with Chron's.
I do manage to get in my 10000 steps daily and usually an hour or more of moderate exercise. Still doing, just need to figure out how to do more and if the Crohn's is preventing me from losing.

Hi, I don't have Crohns, but have a daughter who does. I am therefore aware of the additional challenges that you are faced with.

You mentioned that you stay between 1500 - 1700 calories. Right there could be your issue as far as not being able to lose weight. Have you tried keeping your calories to strictly 1500, maybe even 1400? Why not experiment with this for a few weeks and see where that lands you?

Robin,
I am sorry about your daughter. Not sure how old she is but the meds and treatments along with knowlage of the desese is becoming much better known. I hope she has an easy time of it. I found for me that hormone fluctuations were the worst. IE post pregnacy was awful as was being on any form of birth control. my teens and 20's were bad and my 30 were a lot easier. this current flair up is my first in 12 years.
As you may know with your daughter there are foods one can not tolorate and that is different for all C and C people. it depends on what part of your intestinal track does not work. for me I am coming off a huge long flair up since last January, and some days i just can't eat veggies/fruit or high fiber so my food is a little more coloricly dense. I also should point out that I am NOT on a fast track to lose. it has to be slow as to not set off the C&C and alow the ulsers to take hols again with not enough food through the intestinal track.

I have a BodyMedia Fit (body bugg) which tells me how many calories I burn and based on my intake and out put I should be losing. But I am not so I uess I have to be ok with maintaining for now which is far better than being in a flair up!

I don't have Crohn's but my husband does; he has the fistulizing kind which is kept under control with Remicade. He is also overweight and can't seem to slim down. Although, sometimes I see this as a blessing as before he got his DX, he was dropping weight like a rock, with no explanation. He is not grossly overweight, but he feels he is "fat". I do believe that most of the medications he is on have the side effect "weight gain". In addition to Remicade, he is on Pentasa, Lyrica, Valium, a cholesterol med, and another anxiety med whose name escapes me at the moment. Top that all off with now the addition of steroid shots to control out-of-control eczema and he is a mess.

L: I think I recognize your dog from Healing Well. I don't post there, but I joined there when my husband first got DX'd. I do go there a lot to look up information, like when he developed the eczema...sigh, poor guy.

I read a lot at Healing well but maybe have posted a few times.
I take take pentasa, works a miracle for me and slows down my digestion from 4 hours to a more normal 24.

the eczema may be related to the Chron's, poor guy. SO NOT A DOCTOR but they are using a drug called Humera (sp) that looks like it works for eczema and chron's.

My daughter is just shy of 23. Was diagnosed about 3 1/2 years ago. She's on pentasa. The doctor also recommend Humira, but she's not been on it yet. She is newly married and on BC. Was not aware this could affect her Crohns. And also post pregnancy. Thanks for the heads up. We are very aware though of the food challenges. Especially regarding produce. It is quite difficult at times.

About your body bugg and the correct caloric number to lose weight on, well I wouldn't hold much ummm, weight to it. It's really just a guesstimate. Those things tend to estimate on the high side, which would explain while you're not losing.

I agree that maintaining is better than a flare up - by a lot.

I checked out that healingwell website. Something tells me I shouldn't have. Read about too many symptoms and variances of the disease.

I'm glad you're long flare up is over. And hope that it or any others never, ever return. :hug:

Yep, we are aware of Humera; he is hesitant to change from Remicade at this point though. Remicade is working well for him for the fistulas, so he doesn't want to touch that. He just got his first steroid shot shy of one week ago. So far it is keeping the eczema at bay. He has not had to bandage his hands in almost a week, Amen!

Right now though he is having few bad Crohn's days in row. I am hoping that it's NOT the shot.....

~ :coffee2: ~

the steroids will help the crohn's.

Robin,
as for the BMF it helped me lose 30 lbs, I know it is not 100% but it is a tool that gives some insight as to what needs to get done. in the long run it has been the cheapest program I have done. I just think I am at a stall because of the drugs.

I hope you daughter has an easy go of it. my worst flair ups were after giving birth with the huge hormone drop, althoug pregancy was easy fo me.

I agree about the HW site. there is so much info but the good news is that it is a very active site so questions get answered fairly quickly and somone els is going through what you are.

I am curently taking domething called 6mp. it is a chemo drug, ment to supress the imune system, hopefully to somthing normal so my body can heal. the down side is the blood tests every 6 weeks. Saw the dr yesterday and could trace back this flair up, not with 100% accuracy that the flu shot I got last fall was most likely too much for my system to handle. first one I ever had and NEVER again!

Hey and thanks for the support everyone!

About the pregnancies, obviously all medications will have to be halted when she is ready to try to conceive. Did you do that as well and was it a problem for you??

And my daughter's doctors always advise her to have the flu shot since she is more susceptible to getting it and to have complications from it, given she has a weakened immune system. You never know what the right thing to do is....

actually those with autoimmunal probelms usually have an hyper immune system. in th case of Crohn's the imune system is causing the body to turn on itself.
When a normal person gets a cold the body will send in one little army to combat the problem. hyper immune will send in 10,000 to do the same job. once the problem is take care of it starts to turn on itself. you may notice that your daughter does not get colds the same way you do. she may stil get them but they will last a lot shorter.

As for going off of drugs for pregnacy, again not a doctor, but I am reading that some of the ASA drugs seem to be safe and some will stay on them. back in the dark ages we had prednizone and sulfer drugs. so I did go off drugs.
I have also read, again because of the hyper immune problems that pregancy to the body can be concidered "foreign" and again the body can fight the pregnacy for that reason and lead to misscarrage. I had 2 and 2 pregnacies to term. the OBGYN should be aware of her issues and meds along with her gastro to be aware this is something she plans on doing so she can be ready and she could be concidered high risk. My OB and Gastro were absolutely on the same page when I did this 17 years ago. Also keep in mind that everyones desease is different.

Gee I hope I have not scared you! information is power and one with any medical problem has to go into anything with eyes wide open.

Okay. You scared me. I know that was not your intention and I am grateful for you passing forth your knowledge, but never the less - it frightens me. Especially given she wants a large family and is not looking to start one yet for quite some time.

What a complex disease. :(

Thank you for sharing with me. I do appreciate it. I wish you all the best.

I have a relative with C&C and for her being pregnant halts all the symptoms and she feels great. Hence they have 6 kids. :dizzy:

Thank you so much! I have to realize that every case is individual and this just proves that. :hug:

I have decided I am not reading any more about Crohns for now. We will speak with her doctors about her particular set of circumstances. We will deal with whatever comes up for my daughter as it comes up.

Robin, really did not mean to scare you. Each person is different we we surely worry about our kids. So far mine are not showing any signs.
When you and or your daghter are ready, the information is out there and as you know the more information you have the better the choices you can make.

DS, 21, has Crohns diagnosed in Jan 2010. 10 months ago, seems longer. He is taking Pentasa and monthly injections of Cimzia . He is thin and needs to gain weight. I keep thinking carbs are a factor in the disease and he would do better with a paleo type diet.

My daughter usually does well with carbs. That's usually. Certain times there is nothing that she does well with. Proteins used to be safe, but it is no longer guaranteed.

Karen, our pediatrician, who we have outgrown, HIGHLY suggests following this diet:

http://www.breakingtheviciouscycle.info/

It is VERY strict and my daughter refuses to give it a try.. How I wish she would.

Karen, I am sorry about your son, I hope he is feeling better soon. my flair up has gone on since about the same time and I am finally getting it under control
my safe foods have always been tuna (packed in water) and eggs, scrambled boiled never mattered. white bread/rice/saltines/english muffins just no fiber. some fish is too oily for me when I am sick.
Also I started using protein shakes this time though. Ensure works for me, but some can't do dairy. there use to be one called sustical.

Robin, there are more foods on the legal list that I can't eat than I can, maybe your daughter feels the same way and does not know why yet because she is not aware of the foods that make her not feel well. I will admit it took me a long time to figure it out.

On a good note after a WI at the OBGYN today I am down 30 from the last time a saw her.

Sending the link to DS and reading it myself. Did you buy the book?

No Karen, I haven't bought the book. My DD says she refuses to adhere to that diet, as she has seen the website.

In the beginning, she was VERY resentful and didn't want didn't want to alter her diet at all. She has since had a turn around. Not surprising, given the consequences of eating certain (many) foods.

Perhaps I should purchase it, just so she knows it's available when she wants to experiment.

Karen, how wonderful if it turns out to be something your son can benefit from. Keep us posted.

L144s, sounds as if this would not be optimal for you. Maybe with those who have been recently diagnosed it is. Who knows?

Robin, the thing is that depending on what part of your colon is infected will determine what foods don't work for you. some foods produce gas (dairy is a common one) some are just tough to digest, like nuts, they take a lot of work for the colon to work on and if it is raw from a flair up it can be really painful. and some things will upset your stomach almost instantly, acids like juice. some are just painful from start to finish, beans, and raw fruits and veggies for many and seeds like caraway (pointy little suckers).

I personally don't think it has to do with when you were diagnosed. Lucky for me I have never had to have surgery where others have. I think it takes time to know what foods work for you, be patient with your daughter, she is young and wants to be like all of her friends. We find as we get older that we don't have to be like everyone else. She will certainly pay the price for bad food choices, we all do. I know how badly you want her to feel better. the best diet, short term for feeling better is a low residue diet. I can stand it for about a week, I would rather do ensure without the fiber to quiet the digestive tract and eggs, tuna, and deli chicken are my go to foods for protein when all else is failing.
what you can encourage her to do is to keep a food log and write down how she felt after eating. not for WL purposes, but to maybe figure out what she can't eat and what upsets her from the get go. I would say that this would be a great way to be supportive in her figuring out what will work for her.

I ran into a woman today, who's daughter in law was in and out of the hospital for 15 years suffering terribly with Crohns. She followed the "Breaking the Vicious Cycle" diet strictly, strictly, strictly for one year and has not had a flare up since (about 7 years), with the exception of after giving birth, developing an infection (nothing to do with Crohns) and was placed on anti-biotics.

It really sounds as if this is something to look into. How I wish my daughter would give this a try...

Sending post to DS. I need to order the book. Do you know if she is on any meds? DS has appt with endo next week.

I too was curious about meds and asked about it.

She told me that she is on a very low dosage of something or other, was not sure what it was.

My pediatrician did tell me that there are many that adhere to the diet for the one year and then require zero meds.

I would be happy even with a low dosage medication, given that my daughter still experiences flare ups, almost steady discomfort and frequent pain, while taking high dosages of medication.

Karen, my daughter is not yet willing to go this route, sadly. I sure hope your son is willing to give it a shot, because I think it is very, very promising...

DS has to take intestinal shot of meds about every 6 weeks the serum is the consistancy of thick corn syrup. $5000/month before insurance.

Again, CC & recording what I eat isn't in the same league as this.

Oh my gosh Karen, $5000? And shots? Oh boy. Wow.

My DD's doctor wanted to start her on Humira. It's got some really, really bad side effects. It costs about $1000 a month even with insurance. The money, coupled with the serious side effects was enough for me to ask him to suggest something else, and he did, though she hasn't started taking it. She's very stubborn and defiant.

Anyway, I ordered the book. I looked at that diet again. I know my daughter is so focused on the no's that she can't see past it. The yes list really isn't all that bad, considering the possible pay off.

L144S, I know there are many *legal* foods on the list that don't work for you. But you mentioned that you eat white bread and that is a strictly forbidden food on this diet, as is any flour or grains and starchy vegetables. I think eventually, you can start adding in some of their legal foods, even if they're ones that bother you now. Also, apparently it doesn't matter how long ago you were diagnosed.

How I wish I could follow this diet for my daughter, but of course I can not.

Karen, I am anxious to hear what your son's doctor thinks of this.

robin,
My mane is Linda, happy to intrduce myself :-)

I eat white food and white bread becuse sometimes food just won't sit and no sooner do I eat do I need to run to the john. if eating white foods or forbidden food from the diet mean I can sleep through the night I can live with it. If eating nuts /seeds and high fiber means I can't leave the house and makes me roll on the floor in pain, not going to eat that EVER!
does your daughter have a GI specialist? if not it might be a good time to find a good one in your area. since she is lookg at using Humera, which I know nothing about, a GI Dr. may not want to go in that direction ezpecially if there are other drugs to try first. Reading on the wellness boards it looks like it is for people that have had difficulty with other drugs. Also concidering there are other opttions covered by insurance.

I am taking Metacapapurine and Pentasa. still working on upping my dose of the 6mp (common name) it is given by weight and I will most likely top out at 100mg. It is covered by my insurance at about $30 a month and Max on the pentasa at 2000mg daily, also covered by insurance and $30 a month.

I know you want your daughter to follow this diet but there is no information anywhere I can find that diet can put you into remission especially after following a diet for a year. I can tell you when I eat food that agravates me that it is not fun. truthfully if diet could put sufferers into remission, it would be much more acceped by people who suffer. I am not saying that it might not be worth a try, but as you might read from your daughter's behavior, it is really hard to jump out on a limb and try new foods especially foods that in the past have caused discomfort.

I feel like I come off as a total *B* and I don't mean it at all. Robin, you mean well and as a parent too, I would do anything for my kids and more than anything to watch them suffer would be awful for me.

Karen, how old is DS and how was his apt. Did you chose an endo over GI for a reason?

DS is 21, and we see the gi, specializing in Crohn's & Colitis this afternoon. I will be asking about this and carb related diet issues.

I have another intestinal issue, diverticulosis. I have had two surgeries (one an emergency from peritonitis) so now I am where another one would put me permanently on an ostomy bag. I have a great gi doctor and basically his advice regarding diet is common sense, ie lots of fiber and such, but also, don't just discount foods. If you find something causes you pain, toilet issues and such, take it out of your diet and avoid it. I have a friend who absolutely cannot eat strawberries with those teeny seeds, but I haven't ever had an issue. Popcorn is the enemy though and I avoid it at all costs though I have no troubles with nuts. So, my suggestion to the mother is to help your daughter find her own dieting needs by trial an error. Sometimes it is the only way to find out what works and that is even true with losing weight! For those of you who struggle because of the steroids, I can sympathize. I had been put on hormonal drugs and gained about 50 lbs all together and am having a horrible time getting them back off even though I took myself off the drug 3 months ago! Hang in there and wishing you all the very best!

doctor sounded exactly like Dr. Lustig and he hadn't heard of him. DS will be taking the fructose test along with other blood work. HFCS is a big deal and maufactures will soon be disguising it with other more benign sounding names.

http://www.youtube.com/watch?v=dBnniua6-oM

Linda, I'm sorry, I'm just seeing your post from several days ago for the first time. I absolutely do not think you're the B word. I greatly appreciate you sharing your experiences and knowledge.

Yes, my daughter does has a GI that she sees regularly. She actually went last night, though I haven't spoken to her about what he said as of yet.

As far as the "breaking the vicious cycle" diet goes, I believe it's something to explore. For the first few months, you are supposed to avoid the legal foods which cause you distress, and add them back in later. Upon mentioning it again to my daughter she's not hearing of it.

We are in no rush for her to start on Humira. I told my daughter I think she should see another doctor and get another opinion.

Karen, I'm sorry, I'm unaware who Dr. Lustig is...

no worries Robin,
Karen, I am going to put aside some time to watch the video since it is about an hour and a half :-)

Well, I got the book and read it last night. I think it sounds very hopeful. It makes a lot of sense to me. Oddly enough, so many definite no's on that list are things I don't eat, even though soooo many that adhere to a healthy lifestyle do - such as ZERO grains and ZERO potatoes. Anyway, like I said, I think it sounds very worthwhile to give it a try and though restrictive, do-able.

But my daughter won't hear of it. She will begin taking Humira any day now and I am heartsick over it. I can't get it out of my head and I've been downright miserable over it.

My daughter, my beautiful, ambitious beyond belief daughter, who wowed a crowd of 500 women earlier this week with a knock-em dead speech, who wants a large family, a large career (or two), is heavily involved in volunteer work, is about to start taking heavy duty doses of a heavy duty drug with HEAVY DUTY side affects.

G_d how I wish this was my disease and not hers. :(

RR-
I feel for you and understand. It is harder watching our children suffer than to do it ourselves.:hug:

I feel for you too. I would do anything to keep my boys from suffering.

The healing well boards (search the book name) has some people really happy with the diet. it apears that it seems to be like a phase 2 of atkins or SB. seems that what people are really looking for is the 100g or less of the carbs.

DS had a rough Thanksgiving and I got him Breaking the Vicious Cycle, Specific Carbohydrate Diet. It remains to be seen whether he will try it. If he would do a month, then we would know if it would help.

He has already done some of the diet recommendations so it might appeal to his building on something that is successful.