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islandgirl

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Hello everyone, I'm new here & hope y'all dont mind, I wanted to share alittle about myself & crohns, I live in Gulf Shores Alabama & little over 10 years ago I kept going to the doctor with pains/fevers this went on for years~one day I went in running a high fever & white as a sheet~they finally said we're going to send you over to have your appendix removed. thats when the surgeon found holes in my small & large intestines he took like 40 something large & 30 inches small out. Ive been in remission up until march 05. been going through all those horrid test drinking that crap your supposed to drink for the scans & spueing it like it was green pea soup & Ive tried the pills No better. ~one doc didnt knock me out during one of those colonoscopies That was horrible. I've been on remicade since may 06. which It seems to have helped a little I reckin. I mean I can control going to the bedroom Its the Pain Im having a hard time dealing with & I have a high tolerance for it & I seem to not express myself well trying to let people know Im In Pain. for example I kept going to the doc every day complaining of pain~I was missing work couldnt even get my son to school one day, then after 5 days of it(it only last 10 seconds but when its every minute 24 hours a day)Bam! there goes your emotions & i went in to see the doctor crying Thats when she believed I was in Pain Because I Was CRYING! dang it. they will not give me anything for pain because they dont want to "mask the pain" whatever that supposed to mean? how much pain Im I supposed to take?

my pain is almost like labor pains my whole abdomen will tighten up & hurt like hell for 10 seconds then makes a rumble sound. on a good day its only every 30 min. but mostly every 15 minutes on bad days its one after the other.

Im a single mom raising a wonderful 9 yr old boy & I dont want him growing up having to tell people his mommas dead.

sometimes I feel I should just go to the emergency room & have surgery.

any suggestions or helpful hints will be greatly appreciated.

Thank You.
 
Hye Islandgirl,

I didn't catch your name?? but I would suggest that you get some tests done ie. colonoscopy, barium meal/enema things like this or even a CT scan too look into this because you really should not be in this much pain.

Nobody is expected to have pain but especially as much as what you are suffering. I would demand my doctor refer me for further tests, however I am from Scotland so maybe your ways work a bit different.

Keep us informed
 
DannyB said:
Hye Islandgirl,

I didn't catch your name?? but I would suggest that you get some tests done ie. colonoscopy, barium meal/enema things like this or even a CT scan too look into this because you really should not be in this much pain.

Nobody is expected to have pain but especially as much as what you are suffering. I would demand my doctor refer me for further tests, however I am from Scotland so maybe your ways work a bit different.

Keep us informed
Click to expand...

Hi DannyB~My name is Joy & Ive had all those test except barium meal/enema things I dont know what that is. doc says the problem is at the same place where I had the 1st surgery maybe its scar tissue? Im on remicade & an antiinflammatory pill. before remicade I was taking prednisone. beside the pain Im nauseated mostly at night and a little in the mornings~Im not round anymore thats for sure. Its hard around here to find a doctor ~my doctor now is in pensacola florida which isnt bad 60 min.away. but Ive only seen him once usually I see his nurse. oh I have b12 shots also. still have little energy though. it sucks.

Thanks :)
 
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Welcome to the forum Joy. Have you tried to keep a food diary to see if specific foods are causing more problems compared to other foods? Some foods might agree much better with you (white bread, apple sauce, bananas, rice are usually some safer foods) while others are more likely to cause problems (nuts, skins of vegetables and fruits, whole wheat among others). Try to do this and experiment with some different foods to see if you can isolate safer foods and those that trigger symptoms. Write down what you eat for each meal and how you feel afterwards, including any symptoms. Try and see what specific items seem to cause problems.

I hope that this can help eliminate some of the pain.
 
Hey Joy, I hope you start to feel better soon. I always preach that excercise works miracles. If you can even do the small things it will help. Tell your doctor you want more tests done. Thats the only way he/she will be able to figure out how to help you.

Good luck
 
When I first got diagnosed, I went to one Dr. who was horrible. I then switched to another GI group and got a Dr. that was much more educated about Crohn's and about bedside manner. There's no shame in asking your GP to refer you to a new Dr. for a second opinion (or third or fourth) or because of personality conflict. I did and it was totally worth it! You should not have to suffer in pain like that! And keep asking us questions, we have lots and lots of experience and tips.
 
mikeyarmo said:
Welcome to the forum Joy. Have you tried to keep a food diary to see if specific foods are causing more problems compared to other foods? Some foods might agree much better with you (white bread, apple sauce, bananas, rice are usually some safer foods) while others are more likely to cause problems (nuts, skins of vegetables and fruits, whole wheat among others). Try to do this and experiment with some different foods to see if you can isolate safer foods and those that trigger symptoms. Write down what you eat for each meal and how you feel afterwards, including any symptoms. Try and see what specific items seem to cause problems.

I hope that this can help eliminate some of the pain.
Click to expand...

thank you, I understand that im not be able to digest fibers.
sometimes its so hard to pull away from the table after cooking homemade meals for my growing 9 yr old. Ive sat there & peeled the skin off of peas & beans so I could eat them heehee
I'm going to keep a record now of everthing maybe it will help. thanks again
 
I can't eat a lot of fiber, or any raw fruit / vege. Sometimes not even the cooked ones. But I can eat bread by the basket, and some people can't. Knowing a list of do's and don'ts is a big deal. We all have to learn it in the early stages. An apple, I would love an apple, can't do it. But, that's just me. Everyone is different and the trial and error stage is not fun. Hang in there, keep a food journal, and in time you will know yourself.
 
Jeff D. said:
Hey Joy, I hope you start to feel better soon. I always preach that excercise works miracles. If you can even do the small things it will help. Tell your doctor you want more tests done. Thats the only way he/she will be able to figure out how to help you.

Good luck
Click to expand...

I have a hard time with enough energy just keeping my house clean but my son & I spend alot of time at the beach swimming & I try to walk the dogs once a day around the block. test test test Im broke my insurance sucks everytime I have a test its 350.00 and that adds up quick. thats why Im thinking of just going into the emergency room & have surgery. i dont know.
 
A lot of people here suffered terribly before surgery and then felt a lot better afterwards. Those of us with milder symptoms are fighting to hang on to all our parts, but eventually, we will most likely end up having surgery. As you read our boards, find the ones about surgery and you will find many quite happy with having surgery.
 
Cara Fusinato said:
I can't eat a lot of fiber, or any raw fruit / vege. Sometimes not even the cooked ones. But I can eat bread by the basket, and some people can't. Knowing a list of do's and don'ts is a big deal. We all have to learn it in the early stages. An apple, I would love an apple, can't do it. But, that's just me. Everyone is different and the trial and error stage is not fun. Hang in there, keep a food journal, and in time you will know yourself.
Click to expand...

thank you I have to hang in there for my son. he's the best.
y'all made me feel a little better already
now Im fixing to go take a nap.

take care,
Joy
 
i have a question I know y'all got to have pains can you would you please describe that for me. is it anything like the pain I described?

ty
 
When I used to have pain, it would be extremely sharp. It made me tear up everytime I got it which would every minute or two. I would keel over in pain and I would sometimes just fall. The pain was so bad once I almost passed out.

You said that you barely have any energy, but if you excercised after a while you would get more energy and you would feel better. Also have you tried meditation. You said that you have already had surgery so I am wondering if it would be good for you to get it again. The more surgery you get the more scar tissue will form creating more obstructions.

Best of luck

Ask as many questions as you want
 
Joy,

I definately know it is not easy to go off the foods you love or are right in front of you. I remember a three week period where I continued to eat some foods I knew were possibly "danger" foods, yet I still ate them. Results? Some caused problems, some didn't. Problems though included a night of vomitting, which also made me miss some school the next day.

What I am saying though is while it is not easy, you really need to do your best to stay away from bad foods. I had to go through a 4-moth period on liquids only and while it was not easy, it was what I needed to do.

Good luck and ask any questions you still have.
 
WELCOME ABOARD JOY ... I am sure that you will find the awnsers that you are looking for here & I will pray for you that you will find the help that your looking for too.
 
I use to have those noises but started taking Aloe Vera juice 2 times a day(4 ounces each time) and boom... No more noises after 2 days and the the bleeding reduced by about 70%
 
Devi said:
I use to have those noises but started taking Aloe Vera juice 2 times a day(4 ounces each time) and boom... No more noises after 2 days and the the bleeding reduced by about 70%
Click to expand...

wow ty someone told me to try cherry juice~I'll also try this Thanks!

take care,

Joy
 
Aloha Joy & welcome to the board! One of the really good things about coming here is the feedback from others who have been where you are now. I just know that good things will come to you from that sharing. Hope we'll see you often!
 
RE: Pain -- my first flare was a sharp pain like you would expect of appendicitis and I was very tender. Then it just went into feeling like I've run a long way and have a "stitch" in my side. When it starts to get inflamed or irritated, it feels like little twinges or an ache in my side, about where the appendix is (they took that out so I have no worries that is the problem). However, I haven't felt the pain in months, so you kinda forget about it.
 
Hi Joy,
I am Christina and I am new here too. I also know about the pain and noise your stomach makes. The pain is unbearable when it happens. And usually when it gets like that I start vomiting too. A couple of weeks ago I landed in the ER because I had it so bad I thought I might pass out. I was taking Asacol but my new GI took me off it until he finds out the extent of the disease(I never had a colonoscopy). I will be getting a colonoscopy in December. If I were you I might try to find a new dr if you don't feel like you are being helped. It is their job to listen to you and to make you better. Good luck to you.
 
Hi Joy,
I am brand new to this Forum- so am not sure if I am following the right protocol. I am sorry to hear that you have not been doing so well. This disease sucks! I have had it since 1988 and have been on about every drug in the book. I am sure you heard this before but one of the most important things is to try not to let stress get to you. Relax as much as possible and try to trust that all will work out. The disease has it s natural ebbs and flows. When it is active, things can be really hard, but try to keep a positive attitude and know that it will get better.

I have found diet and supplements make a massive difference in managing the disease. I would do as much research on what foods to eat and what to eliminate. While it tends to be slightly different for each person you will learn a lot by researching what are common offenders.

I also have found supplements make a big difference- the most important ones are Probiotics (such as acidophilus in a high-quality, non-dairy format). They are not covered by insurance and can be pricey but they are really really worth it. If you want to learn more about this stuff, check out my health and wellness website: www.WikiHealth.com. It is small but growing and I am hoping to get a lot more content on there about digestive diseases and treatments so stay tuned.

Feel better,
Elizabeth:) :)
 
Devi said:
I use to have those noises but started taking Aloe Vera juice 2 times a day(4 ounces each time) and boom... No more noises after 2 days and the the bleeding reduced by about 70%
Click to expand...

finally found a health store that has it ~$25.00 a gallon Im going to pick some up tomorrow.
 
kissycole_1979 said:
Hi Joy,
I am Christina and I am new here too. I also know about the pain and noise your stomach makes. The pain is unbearable when it happens. And usually when it gets like that I start vomiting too. A couple of weeks ago I landed in the ER because I had it so bad I thought I might pass out. I was taking Asacol but my new GI took me off it until he finds out the extent of the disease(I never had a colonoscopy). I will be getting a colonoscopy in December. If I were you I might try to find a new dr if you don't feel like you are being helped. It is their job to listen to you and to make you better. Good luck to you.
Click to expand...

I have that pain when I almost pass out should I go to the hospital when that happens? I dont know how much pain Im supposed to take.
 
Im really going to miss Milk~ Should I start keeping it from my son He drinks it like its water.
 
islandgirl said:
Im really going to miss Milk~ Should I start keeping it from my son He drinks it like its water.
Click to expand...

There are other options to Cow's Milk. Goats milk I believe has less lactose in it. To avoid all lactose though is still possible. First you can use digestive enzymes to break down the lactose in milk. This can be done with pills or a liquid that is put into the milk.

I would recommend that milk be purchased in nut form (like almond milk) or soy milk. I believe there is one brand that is somewhat popular called Silk, but I really am not too knowledgable in this area. Any healthfood store should have an adequate supply of both though. Almond milk can also be purchased in vanilla and chocolate flavours (which I doubt your son would object to :)).

Milk is definately a good source of Calcium, but this can be replaced with calcium pills or (what I recommend) calcium-fortified oragne juice. One glass gives 30% of your daily calcium need!
 
Re: Pain... ok so I have a question. Everyone says that they almost wanna pass out when they have the pain. I understand that, but when I have it, I just have to stop and squat... I cant move for a really long time. It hurts really bad like someone is wringing out your insides. Now do I just have a high pain tolerance level or what... because I haven't ever passed out, but I know that pain has left me on a bathrrom floor for 45 minutes in a public place alone before.
 
Stop talking about milk! It's been almost two weeks! Jeez, people, would you talk about cocktails to an alcoholic or smoke in an enclosed space with a new nonsmoker!

Nah, kidding, not really, anyway, soy milk does bad, bad things to me and ends me in the r.room quite definitively. Guess it's just tea for me!
 
mikeyarmo said:
There are other options to Cow's Milk. Goats milk I believe has less lactose in it. To avoid all lactose though is still possible. First you can use digestive enzymes to break down the lactose in milk. This can be done with pills or a liquid that is put into the milk.

I would recommend that milk be purchased in nut form (like almond milk) or soy milk. I believe there is one brand that is somewhat popular called Silk, but I really am not too knowledgable in this area. Any healthfood store should have an adequate supply of both though. Almond milk can also be purchased in vanilla and chocolate flavours (which I doubt your son would object to :)).

Milk is definately a good source of Calcium, but this can be replaced with calcium pills or (what I recommend) calcium-fortified oragne juice. One glass gives 30% of your daily calcium need!
Click to expand...

Hey Mike,

Why "nut milk"? Just curious because I use rice milk, which has a more mellow taste than soy milk (haven't tried almond milk before). I'm just wondering if there's some advantage to nut milk I don't know about?

Thanks!
 
katiesue1506 said:
Re: Pain... ok so I have a question. Everyone says that they almost wanna pass out when they have the pain. I understand that, but when I have it, I just have to stop and squat...
Click to expand...

This made me laugh-- I do sorta the same thing, but usually I lay down on the floor on my back and put my legs and feet pointing straight-up and leaning on the wall. Anything to get some relief, huh? ;)
 
GeoGiGi,

I just forgot to mention rice milk :D. I have never had it, but it is definately another substitute. I really do not know the benefits and cons of each compared to each other, so really consider all as being options as milk substitutes.
 
Thanks, just was curious if you knew of some advantage of "nut milks" vs. rice milk. I like the rice milk because the taste is more mild than soy milk and it's not as thick as soy milk. Tastes like watered-down skim milk... but I'm sure I only think that because it's been SO long since I last had cows milk (and Cara, I too was a milk gluper! (sp?) Nothing I loved more than a big glass of milk. So hang in there!!! You can do it).
 
well I stayed on that remicade for 1 year Did nothing for me except put off surgery(first time I had surgery was 'bout 10 yrs ago)~had this 1st surgery day after memorial day went home & then fews days later my intestines came apart & all I remember is that it was pouring outta my tummy~other thing i remember is my butcher opps...Doc, said to me another surgery or something like that! ugh! man he cut me up and down from my belly button to panty line(hee hee i said "panty")then 2nd surgery he cut 4 times the other way, I had some sort of bands hooked to my muscles God that hurt!~for this to be done Doc had to have my muscles very relaxed then I wouldnt wake up icu for 1 day I Didnt much care for that. anyway I feel soooooooo much better....Good To Be Alive

Take Care,
Joy
 
That sounds horrible about your intestines pouring out of your tummy when they came apart. Are you saying they burst and you were rushed to the hospital and you actually remember them opening you up and it all coming out? I can see why you are thankful to be alive. Glad you're feeling better also.
 
if it wasnt for this freakin tiny hole that open & i reckin scar tissue come out I Freaked!anyway its deep & it has to heal from inside out if it wasnt for that Id be doing much better~Been back to work this week starts 3rd week

take care,

joy
 
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Sojourn said:
That sounds horrible about your intestines pouring out of your tummy when they came apart. Are you saying they burst and you were rushed to the hospital and you actually remember them opening you up and it all coming out? I can see why you are thankful to be alive. Glad you're feeling better also.
Click to expand...

yep that happened when I went home(folks helped me~Bless there hearts) I dont remember much after seeing what happen

God bless my Mom & Dad~i dont know wth i wouldve done without them.

my son...http://i16.tinypic.com/4zlvqj9.jpg
 
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Hi Hoy-
I am so sorry to hear you are in pain and not feeling that you are being heard by your doctor. I live in Florida and see that is where you are going to receive your medical care. Unfortunately the state of medical care here is not in my opinion on par with care in other parts of the nation. I feel fortunate that my son is in Boston since the medical care in the northeast is far superior to what I have seen and experienced here. With that in mind, I would urge you to get another opinion, and search until you feel you have found a doc knowledgable about Crohns who is able to give you the attention you deserve. I know individuals here in south florida who have fown as far as the Mayo Clinic to finally get an accurate diagnosis! While this type of search may not be possible for you, you should seek out the best possible alternatives. There are major teaching hospitals in Tallahassee and that may offer a starting point for you.
When I left New York to move here I also left the nursing profession and moved into teaching because of my disappointment and frustration with the state of medcal treatment here. Good luck to you, and remember that you are entitled to the best care possible, and a physician that is both knowledgable and understanding of your particular needs.
Sincerely,
Ramona
 
crohnsmom said:
Sorry about the typo in your name Joy-teaches me to type before having my morning coffee!
Ramona
Click to expand...


Ramona...

hopefully I'll stay in remission for 10 years or maybe just maybe crohns will Never come back. I'll pray about it, reckin thats about all I can do huh

joy
 

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