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Newbie..frusrated

newbie..frusrated

Hey everyone, I am frustrated right now. I have been on and off steroids for 2.5 years now. I have terminal ileum crohns and suffer from constant bloating, abd pain and cramping,bloody stools (at times), joint pain,anemia,night sweats(at times),diarrhea(of course). I am currently on entocort but go to the dr on wednesday. Have not been feeling bad on this drug but they want to take me off possibly. scared the symptoms will come back, as I already felt worse when they tappered the dose. This med has decreased diarrhea and I now battle constiption, which is hard because I think I lost a lot of rectal tone with diarrhea and now have a hard time with formed stool. What a journey, but my attitude is...I have crohns...It doesn't have me.:smile:
 
Welcome aboard!
You have a great attitude towards dealing with this disease, and it certainly helps in times of feeling low to have such a positive outlook! Hope they manage to sort out a meds regieme for you that works and keeps the Crohns under some sort of control or gets you into remission. Good luck at the docs tomorrow x
 
thanks, I think I need some changes. Can't imagine my symptoms coming back full force. I really am keeping my fingers crossed.
 
I really think my docs need to review everything this visit. I think I have stenosis because my ct scan was inconclusive cause the contrast did not reach the TI. Small bowel follow thru lasted 10 hrs and the barium did not pass , the test could not be completed. When I eat I feel nauseated and vomit frequently. I often vomit things I consumed 24 hours prior, undigested. the pain RLQ and umbilical is intense. I get constipated often, followed by diarrhea once blockage clears. I take nausea meds and ginger like they are skittles. Oh all my scopes (3) they have never gotten into TI because swelling so bad at ileal cecal valve.
 

xJillx

Your Story Forum Monitor
Welcome, Andrea! What a great attitude! I know you are scared to taper off Entocort, but sadly, it shouldn't be used for long periods of time. Steroids should get the inflammation under control and your maintenance meds should keep it away. Perhaps it is time to look into switching up your maintenance med. I wish you luck!
 

ameslouise

Moderator
Hi Chickee and welcome!

Hope your doctors appointment goes okay on Wed and that you are able to get some things resolved. Vomitting is never a good sign. And I can't imagine a Small Bowel series lasting ten hours! Holy moly, that is crazy.

Make sure you tell the doc everything and don't leave till you have a plan of attack you feel comfortable with!

Keep us posted, okay?

- Amy
 
went to doc. HE INCREASED entocort to 9mg again and prednisone 80mg. Xray shoe sm bowel obstruction (partial) caused from stool and food. c reactive protein and esr thru the roof. Surgical intervention sounding more probable to deal with stricture. Don't want to but I cannot continue like this.
 
Hi Welcome :)

I know and can empathize with the pain and symptoms associated with blockages, I do hope that everything goes well for you. Are they going to wait to see how the increase in the meds go first, or are they sending you for a consult with a surgeon, or possibly both?
 

AndiGirl

Your Story Forum Monitor
Welcome, Chickee! I'm sorry to hear about the pain and nausea. Like you, I get my share of nausea. I take ginger on a daily basis, and Zofran as needed which seems like every other day. I hope you and your doctor come up with a plan that will give you the most relief and quality of life. We are here for you.
 
Chickee that's exactly my story. I've also had 3 scopes where the docs could not advance past a certain point due to the swelling and scarring. Unfortunately my last doctor decided it would be a good idea to try to open that area up anyway which caused a perforation.. which led to emergency surgery where I had 1 1/2 feet of intestine removed anyway.

Sounds like you are miserable right now and do not have a very good quality of life at this point. I am so sorry to hear what you are going through, I can definitely relate :(

I know nobody wants surgery (especially us nurses who know a little TOO much), but it may be the only thing that will help at this point. I am 8 weeks post-op and am feeling FANTASTIC, so maybe that will give you a little hope :/

Good luck and keep us posted!
 
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