For those of you with Crohn's, what meds do you take and what diet do you follow? Does anyone have a link to a website with good diet recs? My BFF was just diagnosed today.
I was diagnosed with Crohn's in 2003 after weeks of what I thought was a tummy bug. Horrible stomach pain, diarrhea, blood. It was the worse weeks of my life. My doctor did a colonoscopy and I had 30 ulcers in my large intestine. I tried asacol, didn't work. Then my doctor started me on colazal, 9 pills a day (which is used in treating ulcerative colitis, but it really works for me). When I flare, I am given 40mg of prednisone and taper down weekly. Twice I have done 2 year stints of using Imuran (which has been around since the 1960's and has the most data, where has humira and remicade haven't been around for decades) and it requires blood work often.
As for diet, greasy/fatty foods doesn't help me but if I'm not flaring, I can eat almost anything within reason. I try to eat very healthy and try to exercise and I quit smoking as soon as I was diagnosed. Everyone has their triggers they can't eat (for me it's Alfredo sauce). Tell your BFF to stay away from the forums unless she wants a lot of info that may freak her out. I also take a prenatal vitamin, extra calcium and vitamin D pills since those with crohn's do not absorbed either well. I also take a flaxseed pill and a probiotic from The Vitamin Shoppe, something like 30billion.
DH was diagnosed with Crohn's about two years ago. This was after dragging his feet for seriously a year about going to the doctor. He would get very sick after eating sometimes, particularly when he ate those fun meals you only get once or twice a year. He would end up spending the whole night in the bathroom, sitting on the toilet with diarrhea, and he would feel nauseated as well. He finally went and got a colonoscopy and that's when he was diagnosed, because of the significant inflammation and scarring in his intestines.
The doctor and he are still working to find the particular drug cocktail that works. He's been on and off various steroids over the last two years and is currently taking immunosuppressants and Humira. He goes in for annual MREs, which he just had a couple days ago, and that helps the GI doc track the scarring and damage. It's possible he'll be upping DH's Humira dosage. If that doesn't work...I guess there are a couple more intense biologics that they can try before resorting to surgery.
As far as diet...at least for DH, it's kind of an experiment game. He's learned from talking to other Cronies (yes, that's what they call themselves, apparently) that diet is different for everyone. A lot of people are like "NO FIBER AT ALL!" But one of the foods DH eats when he's feeling crummy is Frosted Miniwheats, which are basically pure fiber. He's learned he sometimes feels off after eating lots of leafy greens, red meat, or particularly fatty food. He drinks a lot of ginger ale and 7-up. And Soylent (a meal replacement drink) helps him a lot too, because it's packed with nutrients but is super bland.
For those of you with Crohn's, what meds do you take and what diet do you follow? Does anyone have a link to a website with good diet recs? My BFF was just diagnosed today.
I was diagnosed with Crohn's in 2003 after weeks of what I thought was a tummy bug. Horrible stomach pain, diarrhea, blood. It was the worse weeks of my life. My doctor did a colonoscopy and I had 30 ulcers in my large intestine. I tried asacol, didn't work. Then my doctor started me on colazal, 9 pills a day (which is used in treating ulcerative colitis, but it really works for me). When I flare, I am given 40mg of prednisone and taper down weekly. Twice I have done 2 year stints of using Imuran (which has been around since the 1960's and has the most data, where has humira and remicade haven't been around for decades) and it requires blood work often.
As for diet, greasy/fatty foods doesn't help me but if I'm not flaring, I can eat almost anything within reason. I try to eat very healthy and try to exercise and I quit smoking as soon as I was diagnosed. Everyone has their triggers they can't eat (for me it's Alfredo sauce). Tell your BFF to stay away from the forums unless she wants a lot of info that may freak her out. I also take a prenatal vitamin, extra calcium and vitamin D pills since those with crohn's do not absorbed either well. I also take a flaxseed pill and a probiotic from The Vitamin Shoppe, something like 30billion.
My mom's side of the family has hereditary GI issues, and I did not escape them unfortunately. Mom has gastroparesis and her brother has IBS, which is complicated by the fact that he has muscular dystrophy. He has to take a fiber drink in the AM and wait until he can poop in the bathroom at home before he can leave the house. Because of his MD, he can't sit down and raise up off a regular toilet.
I am pretty sure I have IBS with constipation. I get backed up easily and my innards ache for days until my system gets cleared out. I have to limit foods like bananas that can stop you up. I saw a GI doc once a couple years ago who told me to keep a food diary, but I stupidly never followed up with him.
DH has the same issue as you, the chronic diarrhea. It's probably IBS as well. He is in the service industry and does not have easy access to a bathroom. When he's having an episode, he has to leave to go find a bathroom multiple times a day. I feel so bad for him. We have both been tested for celiac disease and were negative. With DH though I am not convinced that he is not at least sensitive to gluten, so when I cook pasta I use GF now. He LOVES pizza, but when he eats it he pays for it dearly for a couple days. We have not yet found a pizza place that offers GF options.
I hope you can find some relief. It sucks so hard, I know.
I have had almost the exact same experience as you CloudBee. All the same blood work, stool tests, endoscopy and colonoscopy. The endoscopy showed reflux damage and I was put on an Rx as well. The colonoscopy biopsy came back clear, so I was diagnosed with IBS. I'm not on any meds for the IBS, just the reflux meds. They haven't had any impact on the IBS itself, IME. What has helped is figuring out my triggers. For example, dairy tears me up, so I mostly avoid it. I do allow myself lower lactose dairy from time to time, but I haven't eaten ice cream or drank milk in over a year. I would suggest trying something like Whole 30 and or a low FODMAP diet to determine if you have any dietary triggers and then try to eliminate those.
I just had a colonoscopy yesterday for the same reason. They found a polyp which is not normal for a person my age and they mentioned it's most likely from chronic inflammation. Waiting for the biopsy results but this thread was really helpful.
A little update, as I've had a follow-up visit with GI and have started a new medication.
While I do have inflammation in my esophagus, stomach, and colon, the severity wasn't alarming under the microscope. (She showed me photographs from the procedure and you could clearly see the difference between the healthy tissue and the inflamed areas.) We spent a lot of time talking, and before starting any true Crohn's medications, we're going to try a different approach. She really doesn't want to call it Crohn's even though there's chronic inflammation.
About 6 or 7 years ago I had what we thought was a kidney stone attack. (Which I've had before.) After a weekend in the hospital and additional testing, a HIDA scan showed that my gallbladder was not functioning. There were no stones or blockages. It just wasn't functioning. So it was removed. It was actually a strange case, because usually there's a very apparent reason for why it's not functioning.
Sometimes after your gallbladder is removed, bile constantly dumps in excess into your GI tract, causing diarrhea. If that continues for months or years, it's often treated with a medication called Cholestramine. This med binds the bile acids which should regulate symptoms. There's a chance that even before my gallbladder was removed, the constant dumping of bile was happening as my gallbladder could not regulate the release of bile then, either. For all we know my gallbladder may not have been functioning properly for most of my life.
So before we try some hefty IBD drugs, we are going to trial Cholestramine for a month. It's been around for many years, and the only "side effect" is that it can lower your cholesterol. Crazy. It's also cheap! $13 without insurance for a month's worth of packets. After insurance I pay $10. (You mix a packet with 8oz of water.)
I've only been on it for a few days.. and it's already working! This may be it, guys! No diarrhea yesterday. Which is insane.
The inflammation in my esophagus is separate, and I'll stay on the Prilosec for that. No biggie.
I'm so happy that I finally took the step to see someone and talk through my GI issues. DH was just saying again this morning, that he couldn't believe it took so many years for me to finally get help. Hopefully this is it - and this simple medication does the trick.
A little update, as I've had a follow-up visit with GI and have started a new medication.
While I do have inflammation in my esophagus, stomach, and colon, the severity wasn't alarming under the microscope. (She showed me photographs from the procedure and you could clearly see the difference between the healthy tissue and the inflamed areas.) We spent a lot of time talking, and before starting any true Crohn's medications, we're going to try a different approach. She really doesn't want to call it Crohn's even though there's chronic inflammation.
About 6 or 7 years ago I had what we thought was a kidney stone attack. (Which I've had before.) After a weekend in the hospital and additional testing, a HIDA scan showed that my gallbladder was not functioning. There were no stones or blockages. It just wasn't functioning. So it was removed. It was actually a strange case, because usually there's a very apparent reason for why it's not functioning.
Sometimes after your gallbladder is removed, bile constantly dumps in excess into your GI tract, causing diarrhea. If that continues for months or years, it's often treated with a medication called Cholestramine. This med binds the bile acids which should regulate symptoms. There's a chance that even before my gallbladder was removed, the constant dumping of bile was happening as my gallbladder could not regulate the release of bile then, either. For all we know my gallbladder may not have been functioning properly for most of my life.
So before we try some hefty IBD drugs, we are going to trial Cholestramine for a month. It's been around for many years, and the only "side effect" is that it can lower your cholesterol. Crazy. It's also cheap! $13 without insurance for a month's worth of packets. After insurance I pay $10. (You mix a packet with 8oz of water.)
I've only been on it for a few days.. and it's already working! This may be it, guys! No diarrhea yesterday. Which is insane.
The inflammation in my esophagus is separate, and I'll stay on the Prilosec for that. No biggie.
I'm so happy that I finally took the step to see someone and talk through my GI issues. DH was just saying again this morning, that he couldn't believe it took so many years for me to finally get help. Hopefully this is it - and this simple medication does the trick.
I'm on cholestramine too and have been for years (except during my 2pregnancies) it definitely helps. I only take it once a day (at night before bed) I still have issues (more with urgency than anything else) but it definitely helped with the diarrhea! I found out about the Med about 2 years after I had my gallbladder removed. How often are you taking it?
I'm on cholestramine too and have been for years (except during my 2pregnancies) it definitely helps. I only take it once a day (at night before bed) I still have issues (more with urgency than anything else) but it definitely helped with the diarrhea! I found out about the Med about 2 years after I had my gallbladder removed. How often are you taking it?
One packet first thing in the morning. Does it come unflavored? I was given the orange flavor. Gag. It's like drinking grainy Tang. It's really hard to get it down. But I think it's helping. Save
Post by cinderbella on Apr 9, 2017 10:05:33 GMT -5
I had mono a few years ago and it was so bad that it caused my liver and gallbladder to shut down - I was yellow and my entire body itched. My doctor prescribed Cholestramine to alleviate the itching and get rid of the excess bile. It's so crazy how things are so intertwined and connected like dominoes.
I've since had my gallbladder removed because it was covered in scar tissue from being enlarged for so long - now my only issue is the occasional emergent bathroom run after eating something greasy.
(I mixed mine with Gatorade or orange juice - the texture of that stuff is so gross!)
I had mono a few years ago and it was so bad that it caused my liver and gallbladder to shut down - I was yellow and my entire body itched. My doctor prescribed Cholestramine to alleviate the itching and get rid of the excess bile. It's so crazy how things are so intertwined and connected like dominoes.
I've since had my gallbladder removed because it was covered in scar tissue from being enlarged for so long - now my only issue is the occasional emergent bathroom run after eating something greasy.
(I mixed mine with Gatorade or orange juice - the texture of that stuff is so gross!)
DH is out running errands and suggested he buy orange juice. Sounds like it was a good idea!
I'm on cholestramine too and have been for years (except during my 2pregnancies) it definitely helps. I only take it once a day (at night before bed) I still have issues (more with urgency than anything else) but it definitely helped with the diarrhea! I found out about the Med about 2 years after I had my gallbladder removed. How often are you taking it?
One packet first thing in the morning. Does it come unflavored? I was given the orange flavor. Gag. It's like drinking grainy Tang. It's really hard to get it down. But I think it's helping. Save
Omg the orange flavored one is horrible! I one I have doesn't have a Taste the texture is gross but you get used to it. I mix it wth straight water, you could add it to applesauce too.
That is really interesting about the gall bladder. I knew digestive problems post surgery were common but was unaware there was a medication that helped.
Post by polarbearfans on Apr 9, 2017 19:25:32 GMT -5
Glad you got your results back and a treatment plan.
I have ulcerative colitis. I thought I was going to die and was about 20 lbs underweight before finding a good doctor with an aggressive treatment plan. It hit me hard and fast. I needed to constantly know where a bathroom was, and toward the end it was all blood coming out. I also had reflux that took thousands of dollars and about a year of testing to get that diagnosed a couple years prior to the UC diagnosis... it was causing severe breathing problems.
I'm on some heavier meds than I would like to be but my great doctor moved and I am afraid to deviate from the treatment plan he developed for me and afraid to let his replacement do a colonoscopy on me that is about a year over due to make sure the meds are still working.
That is really interesting about the gall bladder. I knew digestive problems post surgery were common but was unaware there was a medication that helped.
Seriously. It should be protocol for the general surgeon to send you to see a GI after your gallbladder is removed. I kept being told over and over "you don't need your gallbladder". But he basically meant "you can survive without it". Life for many will never be the same once it comes out. (Even if removal is necessary.) For me, life before and after was generally about the same. Though it looks like my GI issues have always been because of my gallbladder.
What I like about my new GI so much, is that she walked me to her office, spread my records across her desk, pulled my endoscopy/colonoscopy images up onto her computer screen, and sat there and just TALKED to me. For a good long time. In an attempt to piece the puzzle together.
I just hope this is it. That it's as simple as this.
I also hope that if you are having tummy troubles that you can see someone and get help, too. Apparently this drug is really common for those who have had their gallbladder removed. And again, the side effects are minimal. It actually lowers your cholesterol! It's also cheap! She said I may have some stomach cramping for a week or two, but to stick with it. I'm only a few days in and while I do have light cramping, I'm definitely seeing a change. Save
Glad you got your results back and a treatment plan.
I have ulcerative colitis. I thought I was going to die and was about 20 lbs underweight because finding a good doctor with an aggressive treatment plan. It hit me hard and fast. I needed to constantly know where a bathroom was, and toward the end it was all blood coming out. I also had reflux that took thousands of dollars and about a year of testing to get that diagnosed a couple years prior to the UC diagnosis... it was causing severe breathing problems.
I'm on some heavier meds than I would like to be but my great doctor moved and I am afraid to deviate from the treatment plan he developed for me and afraid to let his replacement do a colonoscopy on me that is about a year over due to make sure the meds are still working.
That all sounds horrible. I'm so sorry. I hope your body stays on track and meds continue to help. Save
That is really interesting about the gall bladder. I knew digestive problems post surgery were common but was unaware there was a medication that helped.
Seriously. It should be protocol for the general surgeon to send you to see a GI after your gallbladder is removed. I kept being told over and over "you don't need your gallbladder". But he basically meant "you can survive without it". Life for many will never be the same once it comes out. (Even if removal is necessary.) For me, life before and after was generally about the same. Though it looks like my GI issues have always been because of my gallbladder.
What I like about my new GI so much, is that she walked me to her office, spread my records across her desk, pulled my endoscopy/colonoscopy images up onto her computer screen, and sat there and just TALKED to me. For a good long time. In an attempt to piece the puzzle together.
I just hope this is it. That it's as simple as this.
I also hope that if you are having tummy troubles that you can see someone and get help, too. Apparently this drug is really common for those who have had their gallbladder removed. And again, the side effects are minimal. It actually lowers your cholesterol! It's also cheap! She said I may have some stomach cramping for a week or two, but to stick with it. I'm only a few days in and while I do have light cramping, I'm definitely seeing a change. Save
So glad you got help & it's working!! I've actually taken that medication before when pregnant with cholestasis & it hurt my stomach so bad I took it for 2 days and stopped. It was the wrong med anyway according to my research (old protocol). so she changed it. Hmmm...my problems began not long after my gallbladder was taken out too. You are probably on to something & maybe I should try it. Not sure I can handle that med though...maybe I could power through if it stops eventually.
Post by marshmallow on Apr 10, 2017 8:18:38 GMT -5
I have crohn's and had a similar problem after having a major resection. My doctor prescribed cholestid instead of cholestyramine, which is fundamentally the same thing, but comes in pill form. If the taste part is a big deterrent, there are other options!