Just Diagnosed and frustrated

[eje]

Hi I was officially diagnosed with CD a week ago. I started on Colazal oral and mesalamine suppositories and was sicker than I was prior to my diagnosis. I started colazal oral capsules three times daily and mesalamine suppository once in the evening. The most frustrating thing for me right now is I felt better before I had my colonoscopy and stared the medication than I do now. I had to stop the suppository all together because it was making me feel TERRIBLE. I have picked up a new prescription Rowasa suspension but I am waiting to try it when I don't have to go anywhere the next day. I stopped all meds for two days and felt great! I started back on my oral colazal wednesday and am not tolerating it too well. I am still taking it three times a day but once again my symptoms are worse on the meds than off. On Monday I am going to pick up a new med to try, Asacol. I hope that I will be able to tolerated that one. I also have my CT on Monday and a follow up with the doctor on Thursday. I am not sure if I need to find a new doctor and it has only been a week he is not being very understanding at all. When he initially gave the diagnosis I was still very groggy from the anesthesia but my boyfriend felt that the doctor was giving me a death sentence. My symptoms before diagnosis included blood and that was really it. I had an upset stomach every so often but I was able to live my life and eat food and feel fine. Now since I started the medication I have had diarrhea often. He orginally said that it shouldnt be the meds making me feel this way and I just keep telling him that the two days I was off them I had normal stools and felt fine. I know I need medication but when it makes me feel worse and causes me to loose 8 pounds in one week how is that helping me? I just dont know what to do anymore. I want to be able to go about my day a normally as I can the way I did before I started this medication.
There is one sign of relief in this entire situation if I want to look at things that way, 6 years ago I had some unknown illness where I was nauseas all the time had diarrhea and lost a ton of weight. After 3-4 months of pregnancy tests, stool tests and blood work the doctors came up with nothing and then I just started to get better. Well maybe it was CD back then so at least there is an answer now 6 years later.
I would love some words of encouragement. Also if anyone knows of a good and compassionate GI doctor in Nashville preferable through Vanderbilt I would love a recommendation.
Thanks in advance
EJE

 

[Dexky]

EJE, your name is ironic as you'll see. We see Dr. Acra at Vandy but he is a pediatric GI. Has your GI not mentioned prednisone?

 

[eje]

Thanks Mark..your son has Great initials !!! I am not too sure that a pediatric GI would see me but I am sure that they would be more compassionate. I am not sure if my doctor is waiting for the results of the CT to add more meds or change them but prednisone has not been mentioned. He did tell me I should be glad that I don't have cancer though, that made me a bit angry. I think his bedside manner is nonexistent.

 

[Astra]

Hi EJE
and welcome

yes, wot a plonker!
hope you can find some answers soon, and during a massive flare, Pred can work wonders, so maybe you could mention this?
Asacol, Pentasa and all the amnio salicylates are very mild in comparison, they are used more for prevention, as a prophylactic, to maintain healthy guts, a maintenance drug.
If you have activity, Pred will blitz it, and put on much needed weight too.
any questions, fire away, lots of support here
lotsa luv
Joan xxx

 

[eje]

Well I had a follow up with my Dr last Thursday and it was kind of scary how nice he was. We thought that he was a different doctor, maybe a twin. He said that my CT looked good and that he was happy with how I was progressing. I basically have been feeling pretty much back to normal for almost 2 weeks now. I have had no more blood and normal stools!!! He did say that he felt as if he had a conundrum on his hands because the majority of my inflammation and ulceration was in th rectum and there was only a small amount of inflammation in the cecum area so he didn't want to fully say that it was Crohn's and wants to treat it more like ulcerative colitis right now. I go back in two months for a follow up and until then I am to continue the colazal and two more weeks of the mesalamine enema. I am feeling more positive about things right now. I also have put a call in to a good friend that is a natropathic doctor to talk about supplements and diet. I am keeping my positive attitude for as long as I can.

 

[Crohn's 35]

Haha, funny how a doctor can change....if I have my appt at the end of the day, he is rushed and tired, and nothing gets done. It is good that you are getting your Crohn's under control or colitis or Crohn's colitis, whatever it is , hope it continues to get better. Naturalpathic do help, good luck with it. Keep us updated on how you are doing.