Hi. I have CD and have known it since living in London when I was 21 (back in Texas) and now I am 34, however the past year has been really bad for me. I cannot go into remission. Usually I would just have a flare up once a year and it was not really affecting my life except for a few days a year. I was really lucky. But now it has gotten so bad each time I eat solid food I hurt. I drink most of my nutrition now and eating solid food is a huge gamble. I am too tired to stay out of bed for more than a few hours. I have horrible shaking, arthritis, my eyes swell, I black out a lot and I mostly just hurt. I have the burning pain of death in my abdomen and back and it worsen when I am laying down. I have zero appetite and stay usually nauseated. I missed work all last week and yesterday just when I thought I was coming out of it, I was mistaken. It is getting worse and I need to ask advice on meds. I have broken down and made an appointment with a GI at the end of this month because the holistic route I have been on hasn't helped. I am a "heal it with nature" kinda gal but I have been proven wrong this past year and I am giving up to modern medicine. BUT, I am scared. All the side effects listed in the meds they treat CD with are almost as worse than CD. Please advise. Oh, and if anyone gets tremors from CD...please help me understand why. It is terrifying.
Hello
- Thread starter Crystal
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Help Support Crohn's Disease Forum:
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HI Crystal, Welcome to the forum . I know your going through a rough time now and things seem to be terrifying. But, there's always hope. i have Crohn's now for 21 years and counting and was in remission, but out of the blue it acted up again. the Pain is awful i know it because i am going through it both my abdomen and back as well.All i can achieve is liquids boost, ensure and any nutrional drinks to give your bowel a rest. i tried the natural approach and it didn't work for me. now i am back on medications again. There are some medications out there that are not terrifying as they sound. i am sure you researched them. it's best to see a GI specialist as soon as you can and see where exactly the pain is coming from and he can inform you of some of the medications that are out there that have little side effects . And yes i do get tremors if i am in very much pain. I know you are terrified but your among friends now and great friends at that. this forum is very supportive and comforting your not alone. This forum is very knowledgeable of medications and most people here been on most all medication in which they can help you with. But don't be stressed out about medications yet. see what the GI specialist has to say, then let you be the judge. so make yourself feel at home this is a great place to be. Best wishes.
Crohn's 35
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Hi Crystal, welcome to the forum. Scott gave you some great advice and I would say being a crohnie for a long time, I would get your blood work done. It tell you why you have the symptoms that you do. I have had some of your symptoms and it is so frustrating because I too went the holistic , gluten free, BRAT, low residue, hung up side down (just checking to see you are listening lol) We are all different and trial and error is the name of the game. If all else fails then surgery could be down your avenue. Some of us may have to face that, I did twice. Write down your symptoms, and your problems with Crohns and that way you wont forget...cause we fail to do that ,and usually it is important. He may order a battery of tests. Hang in there, we know what you are going through. Keep us posted ok? Hugs!
David
Co-Founder
Hi Crystal and welcome! I'm so sorry you're going through such a tough time. Various things:
1. Waiting until the end of September is too long. Get your appointment moved up. A lot.
2. I wouldn't be too surprised if it turns out that your tremors are related to vitamin deficiency. They'll test you for iron deficiency anemia, but make darn sure they test you for vitamin B12 deficiency as well and any other vitamin and mineral they're willing to test you for from potassium to magnesium. Focus is on B12 though, demand that one.
3. I'm all for "healing with nature" but there are times you need a reset switch. I understand you're scared and it's absolutely understandable, but if you're experiencing what you're experiencing, then I'll bet good money that the drugs are going to be better than what you're feeling right now. And certainly better than what could happen if the Crohn's continues unabated.
I wish you all the best. Keep us updated.
*hugs*
1. Waiting until the end of September is too long. Get your appointment moved up. A lot.
2. I wouldn't be too surprised if it turns out that your tremors are related to vitamin deficiency. They'll test you for iron deficiency anemia, but make darn sure they test you for vitamin B12 deficiency as well and any other vitamin and mineral they're willing to test you for from potassium to magnesium. Focus is on B12 though, demand that one.
3. I'm all for "healing with nature" but there are times you need a reset switch. I understand you're scared and it's absolutely understandable, but if you're experiencing what you're experiencing, then I'll bet good money that the drugs are going to be better than what you're feeling right now. And certainly better than what could happen if the Crohn's continues unabated.
I wish you all the best. Keep us updated.
*hugs*
Thanks David. I will be following up with them tomorrow. Hell, I would be happy with surgery at this point. I am so done with trying it the holistic way.
I had a complete vit and min work up in Feb. It was pretty good compared to what my holistic doc thought it was going to be. It has probably changed a lot since I am having a hard time getting a good variety of foods in my body now. I basically live on homemade broths and enerfood meal replacement drink mixed with fruit. I try to get as much fat from coconut oil and bone marrow as I can but it has been a challenge consuming enough nourishment. I also have been getting B shots since I am unable to digest protien. I have lost 20 lbs in the past few months and my normally atheletic body looks more like a POW body. I am literally a shell of what I was.
Thanks for your support and any advice is desperately needed.
I had a complete vit and min work up in Feb. It was pretty good compared to what my holistic doc thought it was going to be. It has probably changed a lot since I am having a hard time getting a good variety of foods in my body now. I basically live on homemade broths and enerfood meal replacement drink mixed with fruit. I try to get as much fat from coconut oil and bone marrow as I can but it has been a challenge consuming enough nourishment. I also have been getting B shots since I am unable to digest protien. I have lost 20 lbs in the past few months and my normally atheletic body looks more like a POW body. I am literally a shell of what I was.
Thanks for your support and any advice is desperately needed.
David
Co-Founder
I know what you're feeling, to a degree. When I got that first pain in my LRQ, I was 195lbs of muscle and felt amazing. I sit here at 175 and feel old (I'm 33). It's so hard 
You're unable to digest protein? What do you mean? Do you mean you have pernicious anemia? Or can your digestive system just not handle protein right now?
I know a lot of people here have done well with Ensure drinks. Have you tried those?
Oh, and I don't think you need to give up the holistic route entirely. I think there's a balance to be found. That balance is of course different for everyone.
You're unable to digest protein? What do you mean? Do you mean you have pernicious anemia? Or can your digestive system just not handle protein right now?
I know a lot of people here have done well with Ensure drinks. Have you tried those?
Oh, and I don't think you need to give up the holistic route entirely. I think there's a balance to be found. That balance is of course different for everyone.
Not only do I feel 60, I am starting to look it. On my last birthday when I turned 33, I felt that I was in a state of perpetual youth, now it's just awful. Especially when the arthritis kicks in.
As far as the protein comment, I cannot eat steak or chicken or any solid piece of meat without immediate pain and inflammation and then when it decides to leave my body, it is identifiable. The same goes for the supplements I was (was being the operative word). They come out whole. I was having to crush them or take them out of their capsules. I wasn't digesting the coating at all. Now I am taking an organic liquid vitamin. Although, if I drink it by itself it hurts me, I can take it with my smoothies I make with the enerfood and fruit. Gross, I know but Im comfortable enough with you guys since I am sure y'all have been through it too.
I can't get past the mental barrier I have for ensure. The smoothies I drink are pretty nutrient dense and surely better for me than that. "fingers crossed".
As far as the protein comment, I cannot eat steak or chicken or any solid piece of meat without immediate pain and inflammation and then when it decides to leave my body, it is identifiable. The same goes for the supplements I was (was being the operative word). They come out whole. I was having to crush them or take them out of their capsules. I wasn't digesting the coating at all. Now I am taking an organic liquid vitamin. Although, if I drink it by itself it hurts me, I can take it with my smoothies I make with the enerfood and fruit. Gross, I know but Im comfortable enough with you guys since I am sure y'all have been through it too.
I can't get past the mental barrier I have for ensure. The smoothies I drink are pretty nutrient dense and surely better for me than that. "fingers crossed".
Crystal,
Sorry you're feeling so bad. I know people tend to be averse to Prednisone, but it always made me go from feeling like death warmed over to the six million dollar man within about a day. The most important thing for you now is to get the flare under short term control then figure out a maintenance regimen. Avoid surgery if you can. I lost my colon when I was 21 and it's been pretty sh--ty ever since (no pun intended). Not that I'm not grateful for being in remission but sheeeesh!
Ensure is horrible to drink and I can totally empathize with you on that one but you've got to get some calories down. Have you tried Boost? It tastes a bit better than Ensure does. You could also try Instant Breakfast (tastes great!). Unfortunately, with a flare going on you might have some lactose intolerance so keep that in mind.
Eat as much as you can and hang in there! I'm pulling for you.
Sorry you're feeling so bad. I know people tend to be averse to Prednisone, but it always made me go from feeling like death warmed over to the six million dollar man within about a day. The most important thing for you now is to get the flare under short term control then figure out a maintenance regimen. Avoid surgery if you can. I lost my colon when I was 21 and it's been pretty sh--ty ever since (no pun intended). Not that I'm not grateful for being in remission but sheeeesh!
Ensure is horrible to drink and I can totally empathize with you on that one but you've got to get some calories down. Have you tried Boost? It tastes a bit better than Ensure does. You could also try Instant Breakfast (tastes great!). Unfortunately, with a flare going on you might have some lactose intolerance so keep that in mind.
Eat as much as you can and hang in there! I'm pulling for you.
I have been trying to find a maintenance routine for a year now and it doesn't seem like I can find the right one. I cannot tolerate lactose at all right now so I am making my smoothies with water. It is very boring but eating solid food means burning death of fire. I cannot even tolerate my smoothies until about 11am since I am usually very nauseated in the mornings. I used to throw a couple of pasture fed raw egg yolks in my smoothies but I have stopped that the last few months for fear of being too close to starving to death to fight off any bacteria that may come with eating raw egg yolk. I have to keep what little I can get in, in. So I am missing some key nutrients in my glorified water and pineapple/banana smoothies.
Over the past few months I have developed two very specific reactions to meal times. The first reaction is a kind of hatred, despise and loathing I have for anything that requires digestion. Then there is the confusing, warped manifestation of munchausen syndrome where I would kill for a hot dog or cookie even though I know it would kill me right back. Solid food right now is not an option. Water, smoothies and broths are what I get. I throw in a couple of cups of "flare up be gone" tea, coconut oil and a scoop of enerfood meal replacement powder and call it lunch. And anyway, as delicious as instant breakfast is, I am off chocolate too, and we all know chocolate is the best flavor.
Speaking of chocolate, milk chocolate more specifically, having caffeine and dairy in it, am I making a good decision? Obviously not a morally good decision and I have missed it but in the long run physically. I haven't been to the GI since I was 24 ish and since I have only had the odd flare up once a year or so without meds or any intervention medically, except for the odd ER trip until this past miserable year, I am very much in need of advice.
BTW since my diagnosis at 21, I was sent to a dietician at Hammersmith Hospital and she put me through a grueling 6 month elimination diet at the end of which we deduced that i was allergic to gluten. Thus, stay away from gluten and stay flare up free for longer. It worked for 12 years. Since then I have been gluten free but in the last year something else has decided to start kicking my butt and I cannot seem to find it. Maybe it's the water! Jk. I don't know what else to eliminate.
Over the past few months I have developed two very specific reactions to meal times. The first reaction is a kind of hatred, despise and loathing I have for anything that requires digestion. Then there is the confusing, warped manifestation of munchausen syndrome where I would kill for a hot dog or cookie even though I know it would kill me right back. Solid food right now is not an option. Water, smoothies and broths are what I get. I throw in a couple of cups of "flare up be gone" tea, coconut oil and a scoop of enerfood meal replacement powder and call it lunch. And anyway, as delicious as instant breakfast is, I am off chocolate too, and we all know chocolate is the best flavor.
Speaking of chocolate, milk chocolate more specifically, having caffeine and dairy in it, am I making a good decision? Obviously not a morally good decision and I have missed it but in the long run physically. I haven't been to the GI since I was 24 ish and since I have only had the odd flare up once a year or so without meds or any intervention medically, except for the odd ER trip until this past miserable year, I am very much in need of advice.
BTW since my diagnosis at 21, I was sent to a dietician at Hammersmith Hospital and she put me through a grueling 6 month elimination diet at the end of which we deduced that i was allergic to gluten. Thus, stay away from gluten and stay flare up free for longer. It worked for 12 years. Since then I have been gluten free but in the last year something else has decided to start kicking my butt and I cannot seem to find it. Maybe it's the water! Jk. I don't know what else to eliminate.
David
Co-Founder
I personally would try rice milk rather than water if the water is annoying you. Though I like the taste of Ensure so you may want to avoid my opinions
I've read lots of good reviews of coconut oil, but holy crap is my next day miserable if I cook with it. Everyone is different, of course.
But if you're as inflamed as it sounds like you are, I think the biggest step is getting that inflammation under control first.
I've read lots of good reviews of coconut oil, but holy crap is my next day miserable if I cook with it. Everyone is different, of course.
But if you're as inflamed as it sounds like you are, I think the biggest step is getting that inflammation under control first.
I cannot do grains right now. Rice gives me tons of pain during flare ups. I am not really sure why.
When I say coconut oil, I use raw coconut meat with the oil still attached, so it isn't full on oil. I just put it in my smoothies or take it by the tablespoon. It gives me calories and fat without any repercussions.
When I am past this flare up, I will start slowly introducing other items one at a time so I can let me body tell me what is really causing problems and what is only causing problems while I am flaring (which is almost everything). Right now I am down to a very few items that I know do not cause problems.
Fingers crossed but I am through the woods from this last one, it about killed me. Tomorrow I expect to be a little better than today
Thanks for all your advice. It has been super helpful.
When I say coconut oil, I use raw coconut meat with the oil still attached, so it isn't full on oil. I just put it in my smoothies or take it by the tablespoon. It gives me calories and fat without any repercussions.
When I am past this flare up, I will start slowly introducing other items one at a time so I can let me body tell me what is really causing problems and what is only causing problems while I am flaring (which is almost everything). Right now I am down to a very few items that I know do not cause problems.
Fingers crossed but I am through the woods from this last one, it about killed me. Tomorrow I expect to be a little better than today
Thanks for all your advice. It has been super helpful.
Regular Joe
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Hi Crystal.
Welcome to the forum. You're getting some good tips from everyone. I'll throw my guess on your tremors as either malnutrition/deficiency as David suggested, or a blood sugar issue. There's a company that makes a protein/vitamin product that I lived off for about a month a couple years back when Crohn's appeared after maybe 5 years of remission.
The company is called Standard Process, Inc. and the product is SP Complete. You have to mix it into a smoothie (I used soy milk then but I found almond milk is more digestable). Literally I lived off of SP Complete. You have to get it from a registered holistic practitioner, and the company and products are about as pure and quality controlled as you can get. The point is, it has a good measure of protein which it does sound like you're needing too.
On this forum, you can trust what we all say about meds. If it's out there, more than one or two here have already tried it. Some of us prefer getting control of our lives back because it sure is lonely and painful where you're at - and we've all been there too. Medications and MD's have to be a part of life because we have an incurable autoimmune disease.
Lot's of the MD's are good to us and for us because they truly do value their patients regaining a quality life. Sure there are crappy ones, but we try until we feel comfortable. I know my main GI gets a tone of relief in his voice when he listens to me and realizes something he prescribed is working. Many physicians get a real jolt of joy at improving quality of life for their patients.
You said you were "giving it up" to modern medicine. May I suggest then taking your hands and your mind off of "tweaking" until the MD's hopefully get your disease to a more manageable state. Just let go of it for today - only while you're awake. It might take 6 weeks or 6 months, but it's easier if you manage it one day at a time.
I wish you the best, and I know you're hurting. I've been there too. I'm 53 now, and if there is another day for me tomorrow, I'm gonna do my best at grabbing it and figuring out how to live it in a constructive way. The rest of the days can take of themselves.
Welcome to the forum. You're getting some good tips from everyone. I'll throw my guess on your tremors as either malnutrition/deficiency as David suggested, or a blood sugar issue. There's a company that makes a protein/vitamin product that I lived off for about a month a couple years back when Crohn's appeared after maybe 5 years of remission.
The company is called Standard Process, Inc. and the product is SP Complete. You have to mix it into a smoothie (I used soy milk then but I found almond milk is more digestable). Literally I lived off of SP Complete. You have to get it from a registered holistic practitioner, and the company and products are about as pure and quality controlled as you can get. The point is, it has a good measure of protein which it does sound like you're needing too.
On this forum, you can trust what we all say about meds. If it's out there, more than one or two here have already tried it. Some of us prefer getting control of our lives back because it sure is lonely and painful where you're at - and we've all been there too. Medications and MD's have to be a part of life because we have an incurable autoimmune disease.
Lot's of the MD's are good to us and for us because they truly do value their patients regaining a quality life. Sure there are crappy ones, but we try until we feel comfortable. I know my main GI gets a tone of relief in his voice when he listens to me and realizes something he prescribed is working. Many physicians get a real jolt of joy at improving quality of life for their patients.
You said you were "giving it up" to modern medicine. May I suggest then taking your hands and your mind off of "tweaking" until the MD's hopefully get your disease to a more manageable state. Just let go of it for today - only while you're awake. It might take 6 weeks or 6 months, but it's easier if you manage it one day at a time.
I wish you the best, and I know you're hurting. I've been there too. I'm 53 now, and if there is another day for me tomorrow, I'm gonna do my best at grabbing it and figuring out how to live it in a constructive way. The rest of the days can take of themselves.
