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georgiana7 
12:15am, August 5, 2009
Well, I got fed up with my primary doc and I now have a new one and so far seem to like him and how he works. He did a full work over on me. I am borderline diabetic so he is starting me on metformin because he doesn't want me to become diabetic. He also is changing my migraine meds to Topamax and Axert. I have a really high pulse which I have always had and nobody ever thought to do something about it, GO FIGURE. So, now the tachycardia is going to be lowered by him putting me on Toprol. I also, surprise, surprise have high cholesterol so more meds for that and 81 mg. of Asprin because my body produces too many platelets and I don't want to get any blood clots . Just writing all this has given me a headache. Everytime I go to a doc I promise you they add to my diagnoses and give me more meds. I also saw the Rheumatologist and he sent me for tests which I don't know the results yet, but he thinks that I have Fibromalgia, which he will do nothing for because I am already on any medication that he would put me on. Now isn't that just sad.
I will be making an a appointment for a 2nd opinion to a Gastro doc that my PCP recommended within the next couple of weeks and he also wants me to go see a Psychiatrist to see if I am on the right meds or if they need to be changed. So, I guess I will need to figure out if I see them or keep seeing my Psychologist. So many physcians, so much money! BLAH
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So, I had my gastro appointment and left frustrated. She says that I have an infection and is going to put me on Cipro and Flagyl! :( I told her about my ER visit about 6 weeks ago so she has her assistant get the info from that hospital. She asks me did they give you anti-biotics, I answered NO. When she got the notes she sees that I had an increased white count, but nothing was done about it.
I'm annoyed, frustrated, drained and I want to give up. This whole time she had told me I had crohn's and that the diverticulum came back after my surgery. So, I call today to find out what I have. Her assistant calls back and says that I don't have crohn's or colitis, she said I have diverticulitis, gastritis and diversion colitis. Are you freakin kidding me?! She claims I don't have symptoms for crohn's or UC!!! The only symptom I don't have is weight loss. What do I do, who am I suppose to go to??????
I feel so lost and alone and I want to curl up in a ball and just die! There is no way this is diversion colitis, I have been having all of this pain since right after the colostomy was reversed. Which was 5-6 months after my resection. I have fatigue, nausea (sometimes vomiting), joint pain/swelling, diarrhea (sometimes bloody), sometimes constipation, depression, weight gain, hair loss, etc. I need advice.....someone help!
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There is a women here that had a colosomy as a first choice many years ago and she sworn by her decision. She had to fight to get it. You need help that is for sure. Could you fly to Connecticut to see my Doc. There is also a really great surgeon that is in his group. It is hard being that far away from home. I don't have much else. I am sorry.
John
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Hi Georgiana,
I could email my Doc with your journal entry and ask him to look at it as an interesting case? He is a researcher so they love interesting cases. He may not provide you any advise though.
John
So, my last colonoscopy now shows that the diverticulum have returned, I now have Crohn's and Colitis and I had inflammation. I can't believe that this all has returned less than 2 years after my colon re-section. This is just mind blowing. I continue to have so much pain, they have also found a second hernia which I will need to have them both repaired if I could just lose some weight. I'm frustrated with these diseases and with my doctors. I wonder if maybe they are missing something else. I can't have a normal life or function like a person my age should be able to. I saw my pain management doctor a week ago and he is referring me to a rheumotologist because I am having swelling in my hands and feet and I have a lot of joint pain. He is thinking that I have IBD or Crohn's arthritis. I couldn't believe that this was even possible. How do I find an excellent doctor, I need relief from all of these problems and pain. I have no one to ask. So, whomever reads this, maybe you can offer some advise. For now, I am trying to stay positive, but as time goes on it gets harder and harder to do so....
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Hi Georgiana,
You have been away for a while. I was hoping that you forgot about this disease. You should try to get on the drug Asacol. Since you have been diagnosed with IBD and Crohn's, you can leagally be prescribe the drug. It is the best hope drug there is for an over- active colon immune system. It is also called Mesalazine. The drug is not well absorbed and is kinda like calamine lotion for your colon. There are many similaries in my mind between poison ivy and DD. Poison ivy burns holes in our skin not because of the plant chemicals directly. It is because our own immune system attacks us because the plant makes our cells look like invaders.
Since you are having many symptoms of an immune system gone on high alert (arthriritis is another auto immune disease), you have nothing to lose by trying it. There are some risks, so your docs can monitor you to make sure you respond correctly to the drug.
Best Wishes,
John
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Hi John, I did stop coming on for a while and I really wish I could forget about these diseases, but no such luck. I am faced with this daily. The constant pain is a reminder. I suppose I have a lot of anger from having the surgery and then less than 2 years later I find out it all came back. I'm not comfortable with my doctors and don't know who to ask which ones are great. So, I am at the mercy of the ones I currently have. Right now they have me on Lialda. My doc told me I should notice a difference, which I don't, but she still insists that I take the crap. I just don't know what to do I guess. I will definitely look into that drug and mention to her at our next appt. Thank you for caring. :) Always, Georgiana
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Hi Georgiana, I had just asked you a question from something you posted on the general Divi support side before I looked at your profile and read your story. I am so sorry about all of your pain and suffering. I was also diagnosed with divi in my thirties, but with me I think is genetic. My father had to have emergency surgery for divi when he was 39 and my sister has also had attacks since her thirties. Anyway, I just wanted to wish you luck and health. It seems like you have really had a long string of health nightmares. Have you considered completely cutting out wheat, glutten and diary? A friend of mine was diagnosed with Fibromalgia and that is what ended up helping her. Just a thought. I think your profile states you are a vegetarian (as am I) and cutting out wheat and dairy leaves you with practically nothing, but my friend swears that Divi is caused by a severe grain allergy. Just a thought, I have never been able to do it myself. Good luck.
SusyP