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I am so confused....
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jzelazny posted:
y don't know where to start ,I am so frustrated and confused.2yrs ago i was told by my Gi that i had corhns colitis.started me on pantsa,also a couple times endcourt.I had bad reactions with meds hives,pased out cold so i stopped.I have had all the tests ,I also had an ulcer.my last hospital stay.I was told my ulcear went away,went through all the test again,says everything looked fine however i was vomiting a lot with spots of blood fever server stomach pain,i had direa than bad constipation, I was so dehydrated they had a hard time finding veins for iv ,my eyes were so swollen and full of blood spots .I have not been able to eat fruit or veggies or dairy ect.My first visit to a gi doctor was from eating an apple.regardless to say my last visit I felt like i was going crazy and the doctors made me fel like it was all in my head.I went from being a mortgage broker to a babysitter in my home.I have not worn jeans in awhile and when i do i take them off as soon as i am in the house,I feel pregnant all the time and burp like a man ,no offense lol.top everything off I left the hospital with antidepressant pills that they cal bug juice in jail,so i stopped them as well,have not went back to my doctor for all my results.any advise for someone who is not crazy.
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jaimem92 responded:
I would just be persistent with your dr. don't give up on them yet, sometimes it takes time to get answers. Switch your dr if you need, but if something's wrong don't let it continue. Keep them informed.
 
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jzelazny replied to jaimem92's response:
Thank you so much,I am going to make an appointment with my family doctor on Monday and ask for another Gi doctor.i just feel comfortable with the one I have now,although he has been good with test ,he has not said said i no longer have corhns colitis,but how does an ulcer go away,when you have corhns do you also get bad constipation.the pain is there before i have a bowel movement ,during and after for a while i have to lay down till it pass's ,i have seen myself on the toilet for almost an hr and still not fell empty the pain gets so bad trying to have a movement ,i vomit,i get sweets,feverish and weak,is that normal for corhns?i find just before my stomach get that bad i burp all day and all night really deep loud ones,i get gas not as bad as burping,than diarrhea than when there is nothing left i get constipation,bad back aches ,but my gi says its not a flare up without any tests.usually gets worse around that time of month.there is not a day that i don not feel so bloated and lately,i get chest pain on my left side when my stomach is upset.2yrs ago my gi say i have corhns colitis did not explain anything showed me pitchers of my inflamed intestines and my ulcer and sent me home with pamphlets. when my family doctor cant answer my questions she sends me to my gi doctor and he gets mad and sends me back.so from my last hospital stay you can see why i am confused.thanks for listening i don't get to talk about it so thanks.
 
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sheba_q replied to jzelazny's response:
Once you have an IBD you have it for life. Sometimes it'll be active and other times it'll be quiet, but you still have it. What you need now is someone (mostly likely here by the sounds of it) to talk to who can explain things.

Crohn's colitis means you have Crohn's in your large intestine. A short primer:

"Crohn's disease is an inflammatory disease of the intestines that may affect any part of the gastrointestinal tract from mouth to anus, causing a wide variety of symptoms. It primarily causes abdominal pain, diarrhea (which may be bloody if inflammation is at its worst), vomiting, or weight loss, but may also cause complications outside the gastrointestinal tract such as skin rashes, arthritis, inflammation of the eye, tiredness, and lack of concentration."

Dehydration is common with Crohn's. Constipation isn't as common but I know people have posted here with it instead of diarrhea.

You're going to have to figure out a treatment plan that includes meds and dietary changes. Btw a low dose of antidepressants is commonly prescribed as they've been shown to calm the 'mind' we have in our gut.
 
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jzelazny replied to sheba_q's response:
I am really glad that I have found this site.you would not believe how much I am learning and what I have to do.I have been doing a lot of research and the knowledge from all of you on web MD has been most helpful.I have learned more from this site in the last two days than I have from my doctors in 2 yrs.I need to take my tongue out of my pocket,inform myself and and inform my Dr ans ask about treatments and also let him know how much i now know and ask for another Gi doctor,i have also learned it is important to have Gi i can trust and talk to.any advise on any meds and supplements would be great.also would trying a Gluten-free Diet be a good idea seeing i already can't eat alot of certain foods and iam already on a lactose diet ,well i can't eat dairy anyway for some reason.I also lost almost 100lbs in less than a year.although i have stayed at this weight for a few months now.I have also cut alot of food out although it is all the good food i need which makes it hard to have a healthy diet.again thank you and i will keep on reading.Thank you all.
 
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jzelazny replied to jzelazny's response:
sorry just one more question,Do you think I should give Pentasa another try.maybe i did not give it much of a chance.I think i read some where sometimes it can kick you in the pants sort of speak before it starts working.however i may of read wrong.
 
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JavaMamma27 replied to jzelazny's response:
Pentasa did nothing for me. It was like taking a placebo. Prednisone also did not help.

Are you a cainidate for Humira or Remicade?
 
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jzelazny replied to JavaMamma27's response:
I don't know if i am,how bad do i have to be before he does.although he knows i stopped taking Pantasa and has not given me any other meds as of yet.Iam in the process of getting another Gi,as you can see from my post ,i have had a hard time with him.thanks for any advice i really do appreciate it.as you can see right now i am at a lost.and feel as though i may be complaining or winning but to me this is real and painful . my last hospital visit ,i was just made to feel real stupid and alone and i have neglected to go back ,but from reading and the knowledge i have received from this site ,i think i need to start demanding help. thank you one again.
 
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jaimem92 replied to jzelazny's response:
Just remember, every Crohn's patient is different.. What works for one of us might not work for you. We can only tell you what works for us, but please don't take what we have to say over what your Dr says. You do need to be your own advocate, because only you really knows how you feel. Research things on the internet- that's been my best offense, is researching things.
 
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mazdagirl1977 responded:
I hope you find a GI that listens and finds the appropriate treatment plan for you. I was diagnosed with Crohn's in May 2010. I see my doctor often. I have been on a number of medications. Some help, others don't. My advise is to see another GI (which it sounds like you are going to do) and stick with whatever Rx he/she prescribes. In my experience nothing I've taken has provided immediate results. Research whatever is prescribed to you and talk to you doctor to see when you should expect results. Don't worry about whining or complaining - that's not how you're coming across. We've all been there and just want someone to talk to sometimes.
 
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jzelazny replied to jaimem92's response:
well I am back and frustrated more than ever.I am getting a second gi doctor.I guess with all these tests and pills,twice over,it had come to my knowledge that both colonosypy ,sorry spelling, no biopsy was taken to confirm corhn's colitis just with my symptoms and my inflamed intestines and my ulcer,he said Corhn's colitis sent me home with pills and a pamphlet about corhn's. so my last set of test i have no ulcer and no inflammation,now i have to go through it all again and the last couple weeks pain is ,bloating painful bm's and everything else that come with it,it's a little differnt this time last week it was all my left side in my left shoulder blade by my ribs and pains in my chest,yesterday i felt better and today i feel bloated from my chest to my my bum all on my right side , my head feels like it is going to explode my neck is sore,the pain in my in my shoulder blade and in my ribs is unbearable i can't breath,burp or cough ,or move ,i have to take small breaths and not to mention my gut,the thought of going to the hospital makes me more sick with all the hell i went through last time.i am so discouraged and i don't know what to do....
 
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miserable_sob replied to jzelazny's response:
Maybe it is Crohns. The only reason I say that is from what I remember when I came down with Ulcerative Colitis over 20 years ago the 2 main symptoms I remember were diarrhea and rectal bleeding. At first I just ignored it. But after I noticed it was here to stay and there was no getting rid of it, I contacted my doctor......At least that's the way I remember it now.
 
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jzelazny replied to miserable_sob's response:
So,I sucked it up,I was in so much pain i went to the emergency.gave me something for pain,took ex-rays and blood work.it felt like a gallbladder attack ,only i have no gallbladder .anyway the doctor went through my file and told i do not have corhn's,I had to hear it from a emergency dr,rather than my own.he looked at me like i made all this up ,so i got mad...I told him ,do you think i woke up one day and said oh,i want corhn 's,the test and treatment and the pain i went through,ya i wanted this so i also told him it was my gi dr that told me i had it showed me pics of my results ,gave me a pamphlet on corn's and pills ,18 pills a day to be exact.now when he gave the first colonosapy sorry spelling,he took no biopsy,Oct when i was in the hospital he than took a 2nd one again no biopsy,the er doctor said well they wont take a biopsy if things looked good so asked why was a biopsy not done when it looked bad and my gi gave a bunch of pills and told me i had corn's and sent me home.since that day it has been hell,I went from be a Mortgage broker to a babysitter in my home so ya i really want this so i told him not to judge me ,this is not in my head and walked out,he said nothing.
 
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clhensley7 replied to jzelazny's response:
I'm going through a similar situation myself. You are absolutely right, they look at you like your crazy!!! I'm going to another GI myself, and from all of the research I have done recently and from talking to the ppl in here I know that there is NO ONE WAY OR TEST to determine if it is Crohns disease. And-it takes the right doctor to have patience in trying to find out what it is. You know your body and YOU ALONE know when something is wrong so trust that! It's the only thing that has kept me half-way sane through all of this. My PA has blamed it on everything from a virus, infection (yeah like you stay down for 3 months from that) to my gall bladder removal or IBS. Keep trying until you find someone who will listen-thats what I'm doing!
 
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jbicaci replied to jzelazny's response:
I found I had Crohn's 8 years ago. It started when I was 14 years old with a symptom of acid stomach. I was treated with Pentasa
which made me very sick. I stopped taking them. I went to the health food store and purchased Methionine and start taking them. They helped but I had a concern since it cleans the liver and causes Artherotischlorosis hardening of the veins. I went to another Gastrointestinal doctor and gave me Metacarpourine an immune system suppressant and almost killed me to an infection.
I stopped taking them before the infection.
The secrete of treating Crohn's is to clean the liver. I was treated in 1960 and 1963 and each time I was good for 3 years. It was a two week treatment of shots: Methionine, B-12, and vitamin K. Now I am taking Liver Support Factors by Country Life purchased them from the Vitamin Shoppe and put Crohn's in remission. My new doctor gave up on me since I am not willing to take drugs. Diet if super important not to agitate the liver. Eat all the food cooked including fruits until you get healthy again. No can foods, no bottle drinks, no dressings, no processed foods, no peppers, garlic, or onions. No catchup or mustard


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