Don't you love when it all comes together?

[NicolettaRose]

Thanks!

 

[RetroModelSari]

Wow! Som wonderfull purchases and they suit you perfectly!

 

[Daisy Buchanan]

You certainly have my sympathy, Daisy.

I tell my doctor he sucks. He finally changed me from having "non-Hodgkins lymphnoma" (of which I don't have) to lupus (of which I don't have). But I get good drugs. (I don't take them, but that's something else.)

When I got diagnosed with cancer (the first words out of my mouth was "No, I don't") I got a free 3 week vacation in the looney bin (and let me tell you, there are some crazy people in there). Apparently, you're not supposed to be okay with getting told you've got a year to live. I did one treatment of chemo and three days in the hospital before I said no more. You have more paitence then I do, for sure.

I hope you feel better, all you guys.

Golly Elaina, I'm so sorry you had to go through all of that!!!!
Doctors do stink. Although I adore my "team", it took me 3 years of battling with different doctors to find the right ones. From the stories I hear, it sounds like I got lucky, for that I am grateful.
Yeah, I get the good pain killers. Although I do find myself literally craving the dilauded injections, which I can only get if I get admitted into the hospital, and no matter how good the drugs are I do everything in my power not to get admitted!!! Although, a shot of dilauded takes all the pain away in less than a second, and transports you to a very nice world
Unfortunately, Massachusetts has very stringent laws in regard to filling narcotic pain meds. Every month I have to jump through so many hoops just to get the medicine that is prescribed to me. It's becoming a bit of a nightmare, and I'm actually considering buying them overseas and paying cash for them just so I don't have to deal with it any more. But, I have yet to find a reputable pharmacy, one that I can trust to actually mail me the meds once I pay for them. So, I haven't taken that step yet. But just yesterday I spent 6 hours of my day trying to get my oxycontin and oxycodone (percocet) filled. I finally got it, but it involved calls to two doctors and the DEA!! Getting my meds filled is more annoying than having a chronic illness!!
I do hope you are feeling better All we can do is keep our chins up and take what is handed to us with grace. I still think I got lucky. The lesions they found in my large intestine didn't have a chance to spread. So, they just took out the intestine and I didn't need to have any chemo or radiation. I am thankful everyday that in comparison to what could have happened, I got it easy. Feel good and keep us informed as to what is going on. I don't know about you but it does really help to talk about it. I am amazed out how many young people have had such awful health problems. It makes me wish I had pursued a career in a different area of health care than dentistry. I have a degree in evolutionary biology, I sometimes wish I had gone into research. But being that I'm immuno-compromised, there are a lot of bacteria in that field that I can no longer expose myself to. A friend of mine is a cell biologist, and right now she is working on finding a cure for prostate cancer. She makes little money and works horribly long hours, but her research is going to make a huge difference in a lot of peoples lives. She's also been involved in a lot of significant breakthroughs in other area's of medicine. I am so proud of her for that. I just wish that I could do something more than give donations to different organizations. But, every little bit helps
Golly, I've gone on a tangent again I'm a bit passionate when it comes to talking about health. I figure the more we talk about what we have been through and the different ailments we face, the more people will know about said ailments. Knowledge is power. More knowledge means more funding and more research, which brings us a step closer to cures.

 

[GoldLeaf]

You certainly have my sympathy, Daisy.

I tell my doctor he sucks. He finally changed me from having "non-Hodgkins lymphnoma" (of which I don't have) to lupus (of which I don't have). But I get good drugs. (I don't take them, but that's something else.)

When I got diagnosed with cancer (the first words out of my mouth was "No, I don't") I got a free 3 week vacation in the looney bin (and let me tell you, there are some crazy people in there). Apparently, you're not supposed to be okay with getting told you've got a year to live. I did one treatment of chemo and three days in the hospital before I said no more. You have more paitence then I do, for sure.

I hope you feel better, all you guys.

Wow, Elaina! I am sorry that you got put through that. I am very glad that you don't have cancer. And Daisy, and all you ladies, I respect you all so much. You are always cheery and I admire your outlooks. Thanks for sharing your struggles and yourselves with us.

I have an interesting story about Non-hodgkins B Cell lymphoma. My mom was diagnosed when I was in college, and she got the same "year to live" thing. She was fortunate in that she ended up finding a doctor from Boston doing experimental treatments - they hadn't been done on humans yet, but were very successful with mice. She didn't tell me she had cancer, or that she was going through chemo. Stubborn woman didn't want to effect my college education.

Before her first treatment, they told her "This will either kill you or cure you." Mom's attitude was that she was dead either way, may as well give it a try, so she recorded a tape to me, and went in. Needless to say, she has been in remission now for 8 years. It took about 10 months of treatments, now they have it down to about 3 months, with a VERY high remission rate. It is now a cancer that they can almost say they have a cure for.

I hope that you are well, Elaina! How scary to not know what is wrong. I recently got told I either had Menengitis or MS. Wonky doctors!

 

[Kim_B]

Nicoletta, what fabulous finds - and they look so wonderful on you!!

 

[GoldLeaf]

Indeed! Sorry to end up hijacking the thread, you do look splendid, Nicoletta! You found some wonderful items! You have an excellent eye!:eusa_clap

 

[Mojito]

Lovely outfits, Nicolletta.

Thanks for asking, Daisy - I'm fine now, except for a very nasty jagged scar, a lobsided ribcage and a sensitivity on my right side.

Elaina, your story is chilling - the misdiagnosis and what they did to you sounds positively 19th century! Only a strong person can come through an experience like that.

 

[Elaina]

Eh, I'm fortunate my mom is a retired oncology nurse. (Means she's an RN with cancer) and believe it or not, an actress has a similar disease that has helped me with a proper diagnoses.

I just don't sweat it any more. I got to die some day.

 

[marquise]

NicolettaRose-
I was so intensely watching that '30s housedress, it was my dream in plaid! I sniped it ten seconds before the close, and you must've popped in after me. Still, good to know it went to a Lounger, 'specially one who looks so exceedingly lovely in it as you!

(That hat is hotness supreme, btw!)

 

[Daisy Buchanan]

Wow, Elaina! I am sorry that you got put through that. I am very glad that you don't have cancer. And Daisy, and all you ladies, I respect you all so much. You are always cheery and I admire your outlooks. Thanks for sharing your struggles and yourselves with us.

I have an interesting story about Non-hodgkins B Cell lymphoma. My mom was diagnosed when I was in college, and she got the same "year to live" thing. She was fortunate in that she ended up finding a doctor from Boston doing experimental treatments - they hadn't been done on humans yet, but were very successful with mice. She didn't tell me she had cancer, or that she was going through chemo. Stubborn woman didn't want to effect my college education.

Before her first treatment, they told her "This will either kill you or cure you." Mom's attitude was that she was dead either way, may as well give it a try, so she recorded a tape to me, and went in. Needless to say, she has been in remission now for 8 years. It took about 10 months of treatments, now they have it down to about 3 months, with a VERY high remission rate. It is now a cancer that they can almost say they have a cure for.

I hope that you are well, Elaina! How scary to not know what is wrong. I recently got told I either had Menengitis or MS. Wonky doctors!

That is a truly amazing story, I'm sorry you're family had to go through all of that, but so glad to hear your mom is doing well. An extra kudos should go to her for having the courage to go into a clinical trial. I live in Boston, land of the clinical trial. Your mom's courage is helping to save the lives of many, many people. Please give her a hug for me. I have a deep affection and deep appreciation for such people.
I took a similar chance, although they were pretty sure the treatment wouldn't kill me, they weren't sure what it will do to me 20 years from now. I was in a clinical trial for a drug called Remicade. It's a bioengineered medication made from mouse proteins. They had never given animal proteins to a human before. I figured what's the worse that can happen. In the trials they did on other animals they were very successful. I figured I had nothing to lose. I did the trial, and it was successful. Remicade was on the forefront of medical technology, and now it is considered the best treatment for people with Crohns, Rheumatoid Arthritis, or both, like me. I found out later that I was allergic to an ingredient in the medication, so I had to go off of it. But this was a fluke, and didn't mean the drug wasn't successful, the 6 months I was on it I actually showed no signs of progression. This is very important especially in the cases of Rheumatoid arthritis, for it is a progressive disease that destroys the joints. So, I feel like I did a little something to help. Who knows what all of those mouse proteins will do to me!! I'm now on another bioengineered drug similar to Remicade but it is made with human proteins and instead of a 4 hour long transfusion once a week, which required me to spend 1 day a week sitting in the hospital, the drug I'm on now called Humira is one small injection every 14 days. Much easier and it seems to be working, especially on the RA.

Your Mom is truly courageous:eusa_clap I'm so glad that she is doing well

 

[jitterbugdoll]

Ladies, I am so sorry to hear that each of you has dealt with such painful trials, but I am glad to hear that you are doing better. You certainly carry off such style that belies the pain you must have felt (or still be dealing with.) I commend you!

Speaking of illnesses, Nicoletta, how are you doing? You haven't posted an update and I am sure each of is interested in hearing how you are faring.

 

[NicolettaRose]

Hi there Jitterbug doll, I am doing better, I have been able to gain some of my weight back, and have been able to go out with some of my friends and do a little shopping. I am so thankful to God I don't have to have surgery, but might have to have it in the future, but not right now. In the next few weeks, I am going to be taking a trip down to Palm Springs and to relax and maybe go to the spa.

 

[jitterbugdoll]

Hi there Jitterbug doll, I am doing better, I have been able to gain some of my weight back, and have been able to go out with some of my friends and do a little shopping. I am so thankful to God I don't have to have surgery, but might have to have it in the future, but not right now. In the next few weeks, I am going to be taking a trip down to Palm Springs and to relax and maybe go to the spa.

Well, that is good to hear. Did your doctor ever figure out what is causing your troubles?

 

[NicolettaRose]

After numerous amounts of tests, and a consultation with another doctor they determained I had Crohns along with some arthritius which my doctor says is connected with the Crohns. I have had a history of stomach troubles and weight loss. I am going to be probably moving down to So Cal this summer or next fall because I have Fibromyalgia, I think the dry warm climate there will help. Thankfully I have a job which is very, very low stress and one that I can make a good salary working on a few hours a week, so atleast I can continute to work.

 

[Daisy Buchanan]

After numerous amounts of tests, and a consultation with another doctor they determained I had Crohns along with some arthritius which my doctor says is connected with the Crohns. I have had a history of stomach troubles and weight loss. I am going to be probably moving down to So Cal this summer or next fall because I have Fibromyalgia, I think the dry warm climate there will help. Thankfully I have a job which is very, very low stress and one that I can make a good salary working on a few hours a week, so atleast I can continute to work.

Well, if anybody knows what you are going through, I do, being that I have Crohn's and Rheumatoid arthritis.

I noticed that you wrote "a consultation with another doctor they determined I had Crohn's" I'm wondering if this "had" is a typo, just because I want to make sure you are getting the right information. "Had" denotes past tense, and implies that you once had it but no longer do. This isn't possible, for Crohn's is an incurable disease. It's not like having a stomach bug that goes away after taking medicine for a few weeks. It is a disease in which people who are diagnosed with it live the rest of their lives with it.
I'm just a bit confused, for no doctor would say "you had Crohn's with some arthritis", as if it were something you dealt with for a few weeks and then it miraculously went away. Crohn's patients and arthritis patients have periods in which the disease "flares up", followed by periods of remission. But whether a patient is in a flare or in remission, CD and arthritis patients have to take medications every day. I'm just informing you of this because I want to make sure that you are getting the correct information. You should be on meds, and you should be seeing a GI doctor at least every 3 months for the first year of diagnosis. If they just told you that you "had Crohn's" and then sent you on your way, then you need to find another doctor, for this doctor is negligent. Nobody ever once had the disease. Also, joint swelling is a part of Crohn's but it does not necessarily mean you have arthritis. It is a sign of your immune system going whaky, but arthritis associated with Crohn's occurs in more than one type of joint. In particular the lower back and hips. So it may just be that you have secondary joint swelling due to intestinal swelling. You need to see a Rhuematologist to make sure you are getting the proper diagnosis. Although the swelling can be part of the Crohn's, doctors who treat Crohn's are not qualified to diagnose and/or treat arthritis associated with it.

Again, I just want to make sure you are getting the right information. There is a lot of information online about CD. You certainly are lucky that you don't have to have surgery. I've never heard of a bowel obstruction that didn't need to be operated on. I'm not trying to instill fear in you, I just want to make sure you are getting the proper information and care. Bowel obstructions can be very dangerous. If you have one, it should be fixed. They don't just disappear on their own. A bowel obstruction that is left untreated can lead to perforation. I'm not trying to be disrespectful, it just doesn't seem like you are getting all of the information you should be getting from your doctor. This is your health and your life, you want to make sure that you are getting all of the information necessary to live with this illness. It's not something that will go away in a few days. Yes, you will feel better. Like I said in my other post, my case is different, more aggressive. So you can be one of the lucky ones who have one flare, get diagnosed, go on meds and then have a successful remission for the rest of your life. I hope this is the case for you. But, you need to be on maintenance therapy, or the flares will just keep coming back, and it will get worse. If it is Crohn's, you need to get on these meds while it is still controllable.
As for moving to a warmer place, I'll be completely honest with you. Weather makes no difference. Yes, the rheumatoid arthritis feels a little better when it's warm but it makes no difference in the Crohn's. I live in a place that is freezing during the winter, and I have had both Crohn's and RA flares in the winter and the summer.
There is no fix for this, but it is controllable. But the control is up to you. Please make sure you are getting the proper care. Nobody just has Crohn's and then doesn't a week later. If this is what the doctor told you, you need another doctor, and his diagnosis of CD is wrong.
If it is in fact CD I would suggest you start reading up about it. The Crohn's and Colitis Foundation of America is a very good place to start. You need to make sure you are getting the proper care, the proper meds and the proper information on what it is that you have. Whether you have one CD flare your entire life, or one every month, once you are diagnosed with it, it doesn't go away. Nobody once "had" CD. Although if there were someone like this, I'd like to meet them, for they would have found a cure for a disease that has been incurable for the past 75 years!
If you'd like, I could recommend some books on the illness. There are quite a few out there that can be helpful in dealing with the diagnosis, as well as helpful with the strict diet you will have to go on and they have good information on the different meds you will have to take. Meds that you should take while not flaring and meds necessary for when you are flaring. You'll also find good information on the different types of surgeries.
I do hope you will get a second opinion. The information you seem to be getting just doesn't seem right. Remember this is your life and your health. The doctors are there to help you. Make sure you find a doctor that answers each and every one of your questions, and then some. Make sure you are getting good information. I do hate to say this, but it just seems like you might not be getting the best info. You have rights as a patient and deserve the best medical care possible.

Do keep us posted, and let me know what meds you had to go on. I've been on most all of them, so I could tell you what to expect from each one of them.

 

[GoldLeaf]

.... An extra kudos should go to her for having the courage to go into a clinical trial. ....I live in Boston, land of the clinical trial. Your mom's courage is helping to save the lives of many, many people. Please give her a hug for me. I have a deep affection and deep appreciation for such people.

I took a similar chance, although they were pretty sure the treatment wouldn't kill me, they weren't sure what it will do to me 20 years from now. I was in a clinical trial for a drug called Remicade. It's a bioengineered medication made from mouse proteins.

Your Mom is truly courageous:eusa_clap I'm so glad that she is doing well

Oh, thanks Daisy! I respect her a ton. Angry at how stubborn she was, but amazingly proud of her. What is even more amazing, in some ways to me, is that she had cancerous lymph nodes in her brain. When it spreads to the noggin, that is supposed to be all she wrote.

::shakes head:: She's amazing, as is the doctor that crossed state lines to teach a doctor in Syracuse how to administer the treatments. He was being watched by the feds for adminstering an un-FDA approved treatment in other states. He risked alot to help my mom. People can be quite remarkable!

And how brave of you to try new treatments! I have a dear friend who is an RN with RA, and she has such a tough time when it flares up. And to think, she may be benefiting from a drug you were willing to test :eusa_clap Its remarkable how interconnected we all are.

Nic, I am glad you are feeling a bit better. I will keep you in my prayers. They may not do much sometimes, but at least you know someone cares <3

 

[NicolettaRose]

Well, if anybody knows what you are going through, I do, being that I have Crohn's and Rheumatoid arthritis.

I noticed that you wrote "a consultation with another doctor they determined I had Crohn's" I'm wondering if this "had" is a typo, just because I want to make sure you are getting the right information. "Had" denotes past tense, and implies that you once had it but no longer do. This isn't possible, for Crohn's is an incurable disease. It's not like having a stomach bug that goes away after taking medicine for a few weeks. It is a disease in which people who are diagnosed with it live the rest of their lives with it.
I'm just a bit confused, for no doctor would say "you had Crohn's with some arthritis", as if it were something you dealt with for a few weeks and then it miraculously went away. Crohn's patients and arthritis patients have periods in which the disease "flares up", followed by periods of remission. But whether a patient is in a flare or in remission, CD and arthritis patients have to take medications every day. I'm just informing you of this because I want to make sure that you are getting the correct information. You should be on meds, and you should be seeing a GI doctor at least every 3 months for the first year of diagnosis. If they just told you that you "had Crohn's" and then sent you on your way, then you need to find another doctor, for this doctor is negligent. Nobody ever once had the disease. Also, joint swelling is a part of Crohn's but it does not necessarily mean you have arthritis. It is a sign of your immune system going whaky, but arthritis associated with Crohn's occurs in more than one type of joint. In particular the lower back and hips. So it may just be that you have secondary joint swelling due to intestinal swelling. You need to see a Rhuematologist to make sure you are getting the proper diagnosis. Although the swelling can be part of the Crohn's, doctors who treat Crohn's are not qualified to diagnose and/or treat arthritis associated with it.

Again, I just want to make sure you are getting the right information. There is a lot of information online about CD. You certainly are lucky that you don't have to have surgery. I've never heard of a bowel obstruction that didn't need to be operated on. I'm not trying to instill fear in you, I just want to make sure you are getting the proper information and care. Bowel obstructions can be very dangerous. If you have one, it should be fixed. They don't just disappear on their own. A bowel obstruction that is left untreated can lead to perforation. I'm not trying to be disrespectful, it just doesn't seem like you are getting all of the information you should be getting from your doctor. This is your health and your life, you want to make sure that you are getting all of the information necessary to live with this illness. It's not something that will go away in a few days. Yes, you will feel better. Like I said in my other post, my case is different, more aggressive. So you can be one of the lucky ones who have one flare, get diagnosed, go on meds and then have a successful remission for the rest of your life. I hope this is the case for you. But, you need to be on maintenance therapy, or the flares will just keep coming back, and it will get worse. If it is Crohn's, you need to get on these meds while it is still controllable.
As for moving to a warmer place, I'll be completely honest with you. Weather makes no difference. Yes, the rheumatoid arthritis feels a little better when it's warm but it makes no difference in the Crohn's. I live in a place that is freezing during the winter, and I have had both Crohn's and RA flares in the winter and the summer.
There is no fix for this, but it is controllable. But the control is up to you. Please make sure you are getting the proper care. Nobody just has Crohn's and then doesn't a week later. If this is what the doctor told you, you need another doctor, and his diagnosis of CD is wrong.
If it is in fact CD I would suggest you start reading up about it. The Crohn's and Colitis Foundation of America is a very good place to start. You need to make sure you are getting the proper care, the proper meds and the proper information on what it is that you have. Whether you have one CD flare your entire life, or one every month, once you are diagnosed with it, it doesn't go away. Nobody once "had" CD. Although if there were someone like this, I'd like to meet them, for they would have found a cure for a disease that has been incurable for the past 75 years!
If you'd like, I could recommend some books on the illness. There are quite a few out there that can be helpful in dealing with the diagnosis, as well as helpful with the strict diet you will have to go on and they have good information on the different meds you will have to take. Meds that you should take while not flaring and meds necessary for when you are flaring. You'll also find good information on the different types of surgeries.
I do hope you will get a second opinion. The information you seem to be getting just doesn't seem right. Remember this is your life and your health. The doctors are there to help you. Make sure you find a doctor that answers each and every one of your questions, and then some. Make sure you are getting good information. I do hate to say this, but it just seems like you might not be getting the best info. You have rights as a patient and deserve the best medical care possible.

Do keep us posted, and let me know what meds you had to go on. I've been on most all of them, so I could tell you what to expect from each one of them.

Oh sorry, just a typo, I meant to say have, the joint swelling is something I have had for a little while now, but it seems to have been getting worse. I just thought it was a symptom of the fibro. I don't know what to think about the doctor, my mother suggested that I see another, my mother knows a lot of doctors in the community and she is going to help me find a good one. Also, my mother who is very knowlageable of medicene told me that Crohns is connected with Fibro, do you know anything about thi, Daisy? The two doctors I saw previously did not even not much about Fibro at all, so they couldn't tell me about its connection if there is one.

 

[ShooShooBaby]

Nicolletta and Daisy,

have either of you tried acupuncture for helping with pain management? i work in a clinic that sees over 200 people a week, and we help out a lot of people with Crohns, Fibro, and Arthritis. it can be great for pain management for a lot of things. It can be expensive, but if you need help finding an affordable practitioner, pm me, i have a nationwide list

 

[NicolettaRose]

Also the best thing I have found to help lessen the effects of what I have is to do thing to take my mind off of it. I find if I am keeping busy, then I don't put so much of energy into thinking about how bad I feel. The best and most rewarding activity is volunteering. I volunteer mostly with animals at the local no-kill shelter, holding and playing with and interacting with homeless pups and kitties really relieves my stress and makes me happy. Also the shelter has a program where they take animals to elder homes where the seniors can interact with the pets, it is wonderful to see this

. I may be in pain, but I am thankful to God for the bounty in life that I do have, there are so many who are worse off then me. I may have been diagnosed with something, but it does not mean that I am dying and it does not mean I don't still have my youth.Unless I am laying in bed dying, I absolutely refuse to take pitty on myself or to sit in the house and feel bad when I know there are people/animals who truly are much more needy then I.

 

[Daisy Buchanan]

Oh sorry, just a typo, I meant to say have, the joint swelling is something I have had for a little while now, but it seems to have been getting worse. I just thought it was a symptom of the fibro. I don't know what to think about the doctor, my mother suggested that I see another, my mother knows a lot of doctors in the community and she is going to help me find a good one. Also, my mother who is very knowlageable of medicene told me that Crohns is connected with Fibro, do you know anything about thi, Daisy? The two doctors I saw previously did not even not much about Fibro at all, so they couldn't tell me about its connection if there is one.

It's good to know that your mom knows doctors in the area. I know I said this before, but the relationship you have with your doctor is an important one. You want a doctor who will discuss all of your options with you, one that will educate you on the many therapies that are available to you. Every patients case is different, so what might work for one person, might not work for you. It's a tricky disease and your relationship with your doctor is so important because every case presents so differently. Also, it's so important to do everything you can to get control now, for you risk it getting worse. I guess I'm so adamant about this because when I first got sick I wasn't going to a good doctor. It took them nearly a year to diagnose me, and the day I was diagnosed the doctor handed my mom a prescription and said "she's got Crohn's, have her take 16 of these a day and make an appointment to see me in 6 weeks".
By the time this jerk of a doctor diagnosed me I was pretty far gone. I have always had a few extra pounds on me, but in a short period of time I dropped 42 pounds, bringing me to below 100. A few days after I was diagnosed my parents, seeing how sick I was and that I couldn't get out of bed, took me to a different and better hospital. Turns out I had a major infection due to an abscess growing on my small intestine, I was septic and near shock. I had to have immediate surgery. Since that time, finding a good doctor became very important to me.
It's also really important for you to educate yourself on this disease. There are a lot of websites with good information as well as many books on the disease which I would be more than happy to recommend.
Crohn's is an auto-immune disease. Unfortunately about half of people diagnosed with one auto-immune disease will be diagnosed with another. I was diagnosed with Rheumatoid Arthritis 6 months after being diagnosed with Crohn's. Some CD patients do have joint symptoms, this is considered a secondary symptom of the disease. Rheumatoid Arthritis, although an auto-immune disease, is a separate illness. I have to see a different doctor for it, my joint issues aren't a result of the CD, and although the two disease are related they are different. Most Crohn's patients with joint involvement go through what you are going through, swelling of the hands. Some have lower back pain as well, due to the fact that the nerves in your tummy are linked with the nerves in your back. So if one area is aggravated the other will be too. This is considered a symptom of the Crohn's. It's typical, and it will go away once you get the CD under control.
I have heard of Fibro patients who ended up actually having Crohn's and not Fibro. Being that CD is so hard to diagnose, misdiagnosis is common. So, it might just be that all the times you thought the Fibro was bothering you, it was actually Crohn's. I've met people who have both Lupus and Crohn's or Rheumatoid Arthritis and Crohn's, but I don't know anyone with both Fibro and Crohn's. Crohn's can present a lot like Fibro in some patients. I would definitely talk to your doctor about it.
So, what meds did they put you on? I'm on a lot right now, including steroids, and I have been on just about all the meds for both CD and RA, so if you have any questions about them, I'm sure I could answer them.
Also, I do acupuncture. I started doing it to help with the joint pain. The rheumatoid arthritis affects just about all of my joints, but it really affects my lower back and hips. The acupuncture actually ended up helping my tummy pain more than my joint pain. It really does work, and it can be quite relaxing too. Stress is a big contributor to flaring. Only bad thing about it is my insurance doesn't cover it I'm spending a pretty fortune on it but it's worth it since it makes me feel better.
There are so many different ways CD can manifest itself, each case is different. It's so strange, my best friend from college, who has seen me through everything over the past 7 years, just got diagnosed with Crohn's. She was pretty scared, for she's seen everything I've gone through in the past years. But, she went on meds and had surgery, and she's good as new now. A lot of the cases I've heard of are like this. Just to let you know though, you have to be patient. A lot of the Crohn's meds take some time to work. You've got to give them at least a month, some of them 2, before you will know if they are working yet.
It's good that your mom is knowledgeable about medicine. Is she a doctor or a nurse? You have to educate yourself by asking the doctor lots of questions and reading up on the disease. The only other person who might know about the same amount of info on the disease as a doctor is someone who is living with it. Someone who is living with it will also be a bit more understanding than a doctor. Doctor's may be smart, but many lack bedside manner. Also, from my experience, they don't just offer up information. You will probably have to do a lot of research yourself, and then bring up your findings to them. I got lucky with my GI doc, she's wonderful. But, I saw 4 doctors before her. It takes time to find the right one for you. If you go to the CCFA website, you can find info about support groups in your area, as well as some different fundraisers. I'm active in the CCFA community here in Boston. I've learned a lot about the illness through them.