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Hi I'm Nicole

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firepixie

Guest
Hi my name is Nicole!

Let me just begin by saying I am a VERY Stubborn person.....
I was diagnosed with Crohns August of 2007.
I have always been a healthy person; by heathy I mean the worst for me was the common cold and sometimes the seasonal flu. Allergic to nothing.
Starting in May of 2007 my symptoms started brewing. For 4 months I was having constant diarrhea which gradually lead on to bleeding, sharp pains throughout my abdomen, and intense pain with bowel movements (felt like shards of glass). At first I thought that it was something I ate, but as bleeding persisted and increased dramatically and the condition continued to worsen I made an appointment with a GI doctor.
My weight had dropped from 120 to 108.... I'm 5'8. I have always been thin, but this was too thin.
My first GI doctor had scheduled a flex sigmoid scopy.


They made the preparation seem like it was easy but it felt like pure torture.
For the actual procedure, I informed my GI doctor about the pain of preparation and she had an IV started just incase and gave me a little bit of medication. I watched on the screen a partial portion of the procedure, until I could not take it anymore. They had to put me fully under.
Biopsy showed positive for Crohns.
Blood results showed positive for Crohns. Negative for gluten allergy.

Medication the GI gave me was not responding, and GI was difficult to work with so I changed my GI.
I then had a colonoscopy with my new GI to see more of what was going on, and results had shown that my Crohns was where my large and small intestines meet.
Doctor placed me on prednisone I was hoping for weight gain, but no luck.
I was ready to get off of it as soon as I was put on it.

After I was placed on prednisone twice, I was put on Asacol.
Asacol did not work well for me.
Now on Lialda... was kind of skeptical about it because it is new.
Its pretty good, it took about a month and a half for it to kick in.
Doesnt work perfect, works MUCH better than asacol did for me.

About 2 months ago I had an abscess, had no clue it was an abscess until I was in so much pain I could not sit or stand. It finally drained on its own, I went to the Dr and was placed on more pain killers and antibiotics. The Colorectal surgeon said that it was caused from a fistula, and the only way to fully heal it would be surgery where they cut from your anal sphincter up (ouch!), which is very risky for Crohns patients and could result in incontinence. Needless to say I am not going to do surgery. I will just watch and wait.

Thanks for listening.
Looking foward to meeting everyone:)
 

My Butt Hurts

Squeals-a-lot!
Hi Nicole, and welcome to the forum! Glad you 're feeling better, even if it's not 100%. You may end up having that fistula surgery after all. I had no choice about fistula surgery due to pain, antibiotics wouldn't help it after a while. It was awful, but it's over now and much better. Good luck.
 
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firepixie

Guest
My Butt Hurts said:
Hi Nicole, and welcome to the forum! Glad you 're feeling better, even if it's not 100%. You may end up having that fistula surgery after all. I had no choice about fistula surgery due to pain, antibiotics wouldn't help it after a while. It was awful, but it's over now and much better. Good luck.
Hi its great to meet you. How long was recovery for that surgery? The doctor just said as long as its draining its good, but I wonder how long does that last for?
 

My Butt Hurts

Squeals-a-lot!
I was out of work for 2 weeks, but recovery was much longer than that.
You can read my whole story if you click on my name, then click on 'find more posts by My Butt Hurts', then find the thread titled 'I had fistula surgery'. It might be a really good read for you.
Draining is good, but mine was filling faster than it was draining, and oh so painful.

Keep letting us know how the Lialda works for you. I've not heard of that one.
 

soupdragon69

ele mental leprechaun
Hi Nicole,

Welcome to the site! Keep asking keep posting. Looking forward to hearing more from you. Glad you found us.
 
hiya and welcome, Nicole :)

sorry to hear about all the problems you've had, and are still experiencing. i hope the fistula does heal with the meds and time - but take heart from MBH's experience of the surgery. this is one of the reasons this forum is so important, and so good for us - most things we may be facing have been experienced by others on here, and we can get a true insight as to what its all about.
 
F

firepixie

Guest
My Butt Hurts-
Thank you soo much for your advice, your post on 'I had fistula surgery' helped me understand the surgery much much better. It was the best discription yet. Im going to hold off and see if it will heal.


I feel soo welcome here and it is nice to know that people understand what your going through. I finally feel like I'm not the only one. Thanks everyone for your support and for sharing your experiences with me! Ill keep you updated if I go through the surgery.:)
 
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Welcome to the forum

I see you are using Lialda too I just started on it last Tuesday - are you on prednisone as well or just the Lialda?

I have just had a 3 year remission period just broken, I am still a little shocked/ annoyed etc..

My GI is trying me on Lialda too with a less aggressive approach and I was curious when you said it took 6 weeks to kick in - at least that gives me more of a timeline

Thanks for your help

Good luck

Cog
 
F

firepixie

Guest
Hi Cog, I'm sorry that your out of remission
Right now I am off of prednisone, and on Lialda. I could feel it working a little bit within the first week, but it just took 6 weeks to fully feel effective. Let me know how it works for you.
I went on a follow up appointment today at my GI, and he also just put me on flagyl to help with the fistula. He said there is 1/3 of a chance it will work, 1/3 of chance that it will work but i might have another fistula form, and 1/3 of a chance that it will not work at all. I hope the odds work in my favor.
 
I did the fistula too - did they try Cipro too? If that does not work Remicade worked for me.
:)

Thanks for the feedback on Lialda - I am sure the swelling is going down but it is a slow process and I am impatient

Keep healthy
 
F

firepixie

Guest
I think I am going to have to try somthing different. Flagyl made me really sick, I will have to ask my Doctor about Cipro or Remicade.

How is lialda holding up?
 
Sorry I am not surprised Flagyl has that same effect on me. When you explain to the Doctor they have that surprised look on their faces. I would definitely ask for Cipro, for me I had little or no other reactions to it.

Lialda is working the swelling and pain have reduced, frequency is still an issue - working on that but I am making progress and no steroids (always been the treatment in the past and I hate them)

Thanks

Keep healthy
 
F

firepixie

Guest
I am just now starting too feel better after taking flagyl. That was aweful. I am going to give the office a call tomorow to see if maybe they can call me in Cipro.

I am soo glad to hear that liada starting to work with swelling and pain. Lialda did the same for me, first I could feel the difference then it slowed down with frequency gradually. Steroids are the worst, I hope lialda works better for you.
 
It is still working thankfully a bit headachy but that is just my reaction to these drug types - better than the alternative

Normality is returning

Sounds like you hate flagyl as much as I do. And you pay the doctor for advice on how to feel that bad. :)

I hope Cipro works better for you

Keep healthy

Cog
 
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