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Old 04-20-2006, 05:22 AM   #1
Angela22F
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To Sharon76

Hi

Me again

Just wondering how your consultation went yesterday. How are you feeling today? Have they switched your meds?

Ok, enough questions lol I should let you tell me

Angela

 
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Old 04-20-2006, 05:58 AM   #2
Sharon76
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Re: To Sharon76

Ello

Yes i went to see the consultant, i have mixed feelings really.

He has put me on steriods and told me to carry on taking the mesalasine along with the steriods. I have to reduce the dose of the steriods in two weeks time. He hasnt gave me pain relief as he said once the steriods kick in the pain should ease.

He is still against surgery as he thinks i am at a higher risk of complications, therefore, i am to continue with the medication, he is doing an urgent referral to another consultant (the one i have been seeing is a bowel surgeon), a gastro doctor. He explained that even though my bowel has narrowed there is a chance that the steriods will reduce the inflammation, lessen the swelling inside and slightly widen my small bowel which will ease pain. It wont cure it, but it may make the narrowing less. That is why he wants me to continue with the meds for a few weeks.

When i see the gastro doc apprently he will be telling me how badly narrowed my small bowel is and how much of it is diseased by the crohn's, my last doc didnt tell me that, he was quite brief and said i have crohns as my bowel has narrowed and my ileum is also affected.

I have mixed feelings as i want to know how bad the crohns is inside of me, it must be quite bad for it to cause twisting and obstructions. Im not happy about the steriods as i wanted to avoid the steriods really, but if they work then i will take them. The no option surgery at the mo is ok with me as i can get back to work alot sooner and whilst the crohns is calming down i am happy to not undergo surgery at the moment.

To be honest, being told that i have a disease and it is rotting part of my GI tract is very off putting, it kinda makes you think that there is something in there, which shouldnt be there, and i want it out. Very strange feeling.


Anyway............how are you doing??? any better?

 
Old 04-20-2006, 06:36 AM   #3
Angela22F
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Re: To Sharon76

Well.. at least know you know what is happening, and although treatment is slow going, you're on the right track finally.

Hopefully the meds will do their job and you will be able to avoid surgery completely And at least the steroids are not permanent, and hopefully will be able to maintain with the mesalasine.

You consultant sounds wonderful though really. At least he is willing to treat you, and is willing to send you to another doctor who he believes will be able to help you receive better treatment. Isn't that all we ask? To have the proper treatment. He sounds so wonderfully optimistic... and sometimes an optimistic doctor treats the patient better. He is hoping the meds will work, and you will be able to avoid surgery, as a resection apparently has a long recovery... argh there I go again rambling.

Hopefully the steroids will do the trick for you. I know the 9 plus months without treatment has to have been hard on your system... maybe it really isn't too far gone yet.... I'll keep my fingers crossed for you

As for me... I had the barium enema yesterday... that was bearable to wrap it up in one word... although really weird. Anywayz, I met a really nice doctor, he explained the procedure to me, but not the results, I have to wait a week for that. I am hoping though that maybe my gp will refer me to this doctor who performed the test.

I don't know if they saw anything during my test, but, I do know they had a hard time getting the barium to travel to the beginning of the colon... that took some darn tricky maneuvering and alot of time, but it slowly and eventually did get there. And then they did not want ot let me leave the hospital as the barium was not leaving my system as quick as they would have liked it. After I got a little upset about it, they were like, "well you tried your best, drink lots of water and go home". Again, it was the upper portion of the large colon that caused concern... but they wouldn't tell me anything.

It's funny how those kind of things stick in your mind. I'll see next week anyway how it goes.

Besides that... I have reoccuring mouth ulcers that are driving me insane... I have no idea how to get rid of them. And I still have middle belly (around my navel) pain, and alot of tenderness, etc, etc, etc... same old stuff... But I'm managing. I don't look sick on the outside, so alot of people (family mostly) are put off when they hear of all this. I try to not tell people, but you know mothers... and my fiance... he has a hard time with it all... he doesn't think I'm sick and tells me I'm a baby, gets mad at me when I tell him how much pain it causes when he tries to hug me, or cuddle me... he was ok the past two days cause he sympathized because I couldn't eat ( two day prep ), other than that he gets mad.... argh... rambling again sorry. I guess I have more to say today than I thought.

I have started to avoid bread products as well now as I have noticed they make my pain worse. So now I avoid dairy and bread products... Actually I'm only eatting potatoes, rice, and chicken mostly, with vitamin shake for breakfast. I find this helps... but unfortunately not as much as I would like.

Anywayz, thank you for sharing this journey with me.

Angela

Last edited by Angela22F; 04-20-2006 at 06:41 AM.

 
Old 04-20-2006, 07:16 AM   #4
Sharon76
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Re: To Sharon76

yes he is an optimistic doctor, which is good as it gives me more hope and he is putting me in the right direction at last. All being said i am happy that i am finally getting treatment I think the reason why he turned out to be a good consultant is that i eventually opened up to him, told exactly how i felt, broke down in his office due to the pain and the depresson it was causing. This wasnt done intentionally, one day i had enough and really felt like i couldnt cope and i just let everything out.

You said about getting mouth ulcers.......I wonder if you have crohn's in your large bowel right near where your ileum is and it may be right at the edge of the small bowel, hence the pain around your naval area.......because as you probably know that can be a symptom of crohn's (mouth ulcers). Also ulcerative colitis can cause mouth ulcers.

Fingers crossed for your results, and lets hope you start to get answers.

I can understand where you are coming from with regards to your partner getting frustrated. My husband was the same but when i collapsed and was rushed to hosptial, he realised how ill i was, then i had more emergency admissions in hospital. So eventaully it did sink in and now he is great, understands completely.

Once you get a diagnosis hopefully your partner will start to understand, and the more you can try to involve in your care then hopefully the more acceptable he will be. I encouraged my husband to come to all my hospital appointments, he couldnt make them all but most of them and this helped as well. I even spoke to him about the horrible procedures i have done and how it made me feel, once i done that he realised that he wouldnt like any of the tests.

Its such a shame that we cant pass across personal information to be able to support each other that way.


Anyway i am here if you need to talk to somebody, and please dont feel like you are rambling, because you're not.

 
Old 04-20-2006, 07:57 AM   #5
Angela22F
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Re: To Sharon76

I explained some of the procedures to him, and he's like " I don't know how you do it" so I think he is starting to come around... I explained the barium enema... and he was a little more sympathetic, again asking how I can stand to go through with it, but also telling me at the same time that at least I am a little closer to getting better. I just think it's hard for him because he can't actually see anything... like you could if I had been in an accident and had broke a leg or something... you know. i have asked him to accompany me a couple times, but he's a workaholic... so I stopped asking. But I try to understand him, and hopefully he'll come around.

I have my fingers crossed for a diagnosis too... the resulting problems (ulcers, skin rashes, anemia, etc.) are becoming a little overbearing. It's alot to handle, and at 23 I feel like I'm about 60

I agree it's a shame we cannot pass along personal info as you've been a rock for me through this... but at least we can help each other here.

 
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