• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

New to site, not to crohn's :(

S

stacichristine

Location
Lawrence, KS
Hi everyone. I am new to the site and have found lots of helpful info here. I am a 36 year old mother of three boys. I started having stomach issues when I was about 19 years old and spent countless nights in the ER because of the pain I was in. The type of crohn's I have is in small intestine and basically I have the opposite problem of most, which is severe constipation. I just never GO! I have a "road block" so to speak, that stops my flow of traffic which causes me to vomit constantly when I am flaring. The pain is unbearable and I can't function at all. I spent many countless years not knowing what was causing all this pain. Had my appendix removed in error because they thought that was what was wrong. Not a week later back in hopsital. More pain meds for temporary relief, then sent back home with no answers. When I was about 28 I finally told my primary dr I could take no more, so she sent me to GI. Had a colonoscopy and upper GI scope. After that, a barrium x-ray, which is where my crohn's was discovered. Was put on entocort at that time which worked fairly well for me at that time. Last week, I had worst flare that I had in a long time and ended up back in the ER for 3 days. Had another barrium x ray where they found a fistula by my colon, and a complete blockage. Luckily, as of now I don't need surgery but am on prednisone, hydrocodone, and anxiety meds. Dr wants me to start remicade, so am getting my blood work done this week to make sure I am good to start the treatments. I am just hoping and praying this will work for me!! I have been miserable for a long time and am ready for relief!
Anyway, that's all for now. Thanks for listening and any tips or advice, opinions on your remicade experience would be appreciated!
 
C

cheerio

Hi StaciChristine!
Glad you are 'one of us' now! This is a great site for support. I am almost in the same position as you, my doctor wants to start Remicade too. I am fighting it tooth and nail, though.
I currently take Azathioprine 150mg, and had to start Entocort (5mg)back up because I started to have issues again.
The Remicade section has answered many of my questions, and the people seem really nice.
Good Luck, and I hope we see you around her
 
S

stacichristine

Location
Lawrence, KS
Hi Cheerio! Any reason you are not wanting to take remicade? Other than it's a huge commitment? I am just really needing relief and less worry about when I will have another flare!!! I think I feel one coming on now even, and I HATE IT!!!! I will check out info here on remicade! Thank you!!!!
 
Susan2

Susan2

Hello stacichristine.

I can't help with the Remicade, but I fully understand your experiences of pain so extreme that you vomit and the years of not knowing what was wrong. There were not so many drug choices in my time, so I spent 25 years on Cortisone, but hopefully you will find something that will give you relief. :hug:

Edit: Not Cortisone, I meant Prednisolone.
 
rthiele

rthiele

stacichristine said:
Hi everyone. I am new to the site and have found lots of helpful info here. I am a 36 year old mother of three boys. I started having stomach issues when I was about 19 years old and spent countless nights in the ER because of the pain I was in. The type of crohn's I have is in small intestine and basically I have the opposite problem of most, which is severe constipation. I just never GO! I have a "road block" so to speak, that stops my flow of traffic which causes me to vomit constantly when I am flaring. The pain is unbearable and I can't function at all. I spent many countless years not knowing what was causing all this pain. Had my appendix removed in error because they thought that was what was wrong. Not a week later back in hopsital. More pain meds for temporary relief, then sent back home with no answers. When I was about 28 I finally told my primary dr I could take no more, so she sent me to GI. Had a colonoscopy and upper GI scope. After that, a barrium x-ray, which is where my crohn's was discovered. Was put on entocort at that time which worked fairly well for me at that time. Last week, I had worst flare that I had in a long time and ended up back in the ER for 3 days. Had another barrium x ray where they found a fistula by my colon, and a complete blockage. Luckily, as of now I don't need surgery but am on prednisone, hydrocodone, and anxiety meds. Dr wants me to start remicade, so am getting my blood work done this week to make sure I am good to start the treatments. I am just hoping and praying this will work for me!! I have been miserable for a long time and am ready for relief!
Anyway, that's all for now. Thanks for listening and any tips or advice, opinions on your remicade experience would be appreciated!
Click to expand...
WOW sounds so much like how things went for me. Good luck
 
rthiele

rthiele

Yes, I have been DX with Crohnsin 2010, had resection ascending colon removed with appendix and a few other things I have always had bathroom issues, I am Lactose intolerance, have seansonal allergies, another with to soy. peanuts, and dustmites. I have had a few cyst ending in endometriosis, and have a hysterectomy. Fighting c diff on a monthly basis. Had surgery on my bladder colloisping due to c diff. Arthritis and carpel tunnel and one 17 different meds daily
 
rthiele

rthiele

still have issues and sick and tired all the time, GP dr says I cant work and I really dont see how I could with all my issues
 
S

stacichristine

Location
Lawrence, KS
Oh my! I am sorry that you are going through all that! That is a LOT to be dealing with. I know how it is to not be able to do much of anything. I have a job that is very demanding and it can be so frustrating to have to deal with this, work, kids, husband, etc. Stress is overwhelming most days. I hope they can figure something out for you to get some relief!!
:)
 
rthiele

rthiele

Me too Take it easy on the stress. Stress plays a role in the bowels working. I was working 3 jobs 1 Ft and 2 PTs along with Ft school, husband and 2 kids and I really dont know how I did it, but I know when I am really stressed out it acts up. I do take meds for anexity and for sleep bacause I hurt or my stomach doesnt let me sleep. I really wish I could say it normal but it is and I wish i was normal I am so anti soicalable now. I was so active in my life now I feel as I no long can do anything, without worrying about bathroom issues, it quite imbarrasing
 
David

David

Co-Founder
Location
Naples, Florida
Hi Staci and welcome to the forum.

Awwww, I'm so sorry you're having so much trouble, you poor thing :( With that fistula, Remicade is indeed a good choice. Hopefully it'll get things closed up real quick for you!

I'm a little surprised they gave you the hydrocodone though since one of the common side effects is:

*drumroll*

Constipation.

I'm really glad you joined. We're here for you!
 
S

stacichristine

Location
Lawrence, KS
Well, I guess that's why they want me taking miralax also. But honestly, don't think much of anything could make my constipation worse!! It is already pretty bad as it is. I have been trying not to take too much, but of course my tummy has been upset off and on since getting out of hospital.
 
S

stacichristine

Location
Lawrence, KS
Uh oh. No they didn't. I hadnt had a BM in over 7 days so the nurse told me to take several doses to get me going again. Is that something I shouldn't be doing? Haven't taken any in a few days.
 
David

David

Co-Founder
Location
Naples, Florida
Oops! Don't mind me, I was thinking of Metamucil which is psyllium. Sorry about that, I get the two confused on occasion and need to be careful about that. I'm daft sometimes :(
 
S

stacichristine

Location
Lawrence, KS
Im currently taking the prednisone, hydrocodone as needed, and lorazepam for anxiety, though haven't taken much of it at all. Just the first couple days home. Starting blood work tomorrow for immuran/remicade tests tomorrow
 
S

stacichristine

Location
Lawrence, KS
Oh no worries!! I really don't like to use it, and quite frankly it doesn't work all that well for me. Nothing really does. That's part of reason I take kids vitamins!! Too much iron in adult pills!! :)
 
C

cheerio

StaciChristine, I am avoiding Remicade because, to me it is the end of the road drug for this. I have gone from the entry level drugs to being told Remicade is next in only 8 months. If this is the last, most potent drug, then what do I do if it doesn't help? So, before I commit, I decided to treat food like medicine and see if I could improve that way. I am over two weeks in and seeing some improvement. I look forward to seeing my blood results at the end of the 30 days. I don't hate the drug, I just want to try another approach first.
 
CLynn

CLynn

Location
Missouri
Hi Staci, welcome! Have never been on remicade, so can't help there, but glad you found the forum, a wealth of information and experience here!
 
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