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Hello Newbie here

Thanks for having me everyone.
I was diagnosed with ulcerative colitis at 13. I kinda let it go partially due to a schizophrenic mom who couldn't take care of herself let alone me.
Fast forward to my middle 20's. I ended up in the hospital numerous times for what the doctors figured was lupus.At one point I was in ER for inflammation of the ileum. May of 2010 it got really bad so I went to a GI who did the scopes and biopsies. He said I had crohns,the biopsies were considered normal because they showed unclassifiable changes in my bowelife and gave me steroids. I let it go again until 2013 when my mom died suddenly of a brain aneurysm following a stroke. I was without medical coverage so I was seeing someone at urgent care whom said I had an abscess in my lower bowel near rectum. I finally got insurance this past year. A GI doctor following an ER/hospital stay ordered more scopes based on the CT findingscan. The scopes looked good but the GI doctor was smart enough to order the pill cam. He knew his scope was missing something because they don't go up too far. He started me on pentasa, 8 pills a day which made me super sick. I didn't eat for 3 days and ended up back in hospital. Another CT showed problems of colitis. My follow up with GI was crazy. He yelled at me and said because of my CRP and other blood work being so off he couldn't give me anything but oh by the way the pill cam showed bad ulceration in my small bowel just above my ileum. He put me on a 3 month course of Budesonide and wants me to try Pentasa again. He has been saying it was a stomach bug that caused my issues with pentasa before. I see him in a few days. Did anyone else have issues with pentasa? Does budesonide help? I understand ya'll aren't doctors but I am so new to actually getting treatment I just want input. Doc did bring up the chemo drugs too but said I was not a good candidate for them because my blood work came back yucky.
 
Thanks for having me everyone.
I was diagnosed with ulcerative colitis at 13. I kinda let it go partially due to a schizophrenic mom who couldn't take care of herself let alone me.
Fast forward to my middle 20's. I ended up in the hospital numerous times for what the doctors figured was lupus.At one point I was in ER for inflammation of the ileum. May of 2010 it got really bad so I went to a GI who did the scopes and biopsies. He said I had crohns,the biopsies were considered normal because they showed unclassifiable changes in my bowelife and gave me steroids. I let it go again until 2013 when my mom died suddenly of a brain aneurysm following a stroke. I was without medical coverage so I was seeing someone at urgent care whom said I had an abscess in my lower bowel near rectum. I finally got insurance this past year. A GI doctor following an ER/hospital stay ordered more scopes based on the CT findingscan. The scopes looked good but the GI doctor was smart enough to order the pill cam. He knew his scope was missing something because they don't go up too far. He started me on pentasa, 8 pills a day which made me super sick. I didn't eat for 3 days and ended up back in hospital. Another CT showed problems of colitis. My follow up with GI was crazy. He yelled at me and said because of my CRP and other blood work being so off he couldn't give me anything but oh by the way the pill cam showed bad ulceration in my small bowel just above my ileum. He put me on a 3 month course of Budesonide and wants me to try Pentasa again. He has been saying it was a stomach bug that caused my issues with pentasa before. I see him in a few days. Did anyone else have issues with pentasa? Does budesonide help? I understand ya'll aren't doctors but I am so new to actually getting treatment I just want input. Doc did bring up the chemo drugs too but said I was not a good candidate for them because my blood work came back yucky.
I am so sorry you had so many things happen to you:-( Do you have Crohn's AND UC? Also, have you tried diet modifications at all?
 

scottsma

Well-known member
Location
Tynemouth,
Hello and welcome to the forum.It's good that you're getting things sorted.You've been through to much for to long.I can't offer the advice you want,but I send my support.
There are lots of people on the forum who have experience of the meds you mentioned so I'm sure someone will be along soon.At the beginning of diagnosis it's sometimes trial and error as to which treatment will help you.What works for some does nothing for others.I hope you get on the road to remission really soon.
 
I am sorry for all you have been through. I have Crohn's Disease . Recently my doctor put me on pentasa but quickly switched me to Lialda. Everyone is a little different in how they respond to medication. I am on Budesonide also. I could be wrong but I feel like Humira is the biggest help for me. I hope they can find the right mixture of :medicines for you.
 
Thanks all for the replies and support. It's a tricky thing this Crohns. Yes apparently from what I've been told colitis is a temporary thing. I'm not sure I believe this because look at all the folks suffering from colitis for years on end???? But yes from what I was told at the ER ( ours is a teaching hospital, cutting edge and amazing) this last time you can have a bout of colitis on top of Crohn's. I'm just afraid that the pentasa reacted bad with me having active ulcers. I would NEVER sue a doctor trying his best to help me but I have to wonder if he isn't worried about that. He didn't know I had severe ulcerations when he put me on the pentasa. I don't blame him at all. Is anyone a smoker? I know, naughty me but my GI has been saying the pills don't work on smokers and all of his patients who smoke go straight to the injections IE humira
 
Thanks all for the replies and support. It's a tricky thing this Crohns. Yes apparently from what I've been told colitis is a temporary thing. I'm not sure I believe this because look at all the folks suffering from colitis for years on end???? But yes from what I was told at the ER ( ours is a teaching hospital, cutting edge and amazing) this last time you can have a bout of colitis on top of Crohn's. I'm just afraid that the pentasa reacted bad with me having active ulcers. I would NEVER sue a doctor trying his best to help me but I have to wonder if he isn't worried about that. He didn't know I had severe ulcerations when he put me on the pentasa. I don't blame him at all. Is anyone a smoker? I know, naughty me but my GI has been saying the pills don't work on smokers and all of his patients who smoke go straight to the injections IE humira
Ulcerative Colitis is for the rest of your life. There is Crohns Colitis which means the Crohns Disease is in your colon.
 
And that's what is so confusing! I was dx with Crohn's but then the local ER said I had some colitis on top of it. Maybe that's why my GI doctor was so upset saying I probably had a stomach bug. So confusing. I know I have Crohn's of the small bowel. My paperwork all says that. The colitis coming into play is crazy. Thanks for your input but that really wasn't part of my question:)
 
Pentasa should not cause your CD any issues. If that's what your question was. Having ulceration and taking Pentasa is fine. In fact, in UC the inflammation and ulceration is in the top layer only and pentasa is used to treat it.

With CD the inflammation is transmural meaning it affects all layers so pentasa isn't as helpful. But is often used as an adjunct therapy.

Budesonide is a gut specific steroid used to get the inflammation under control while a maintenance med is started to take of when tapered off the Budesonide. I'm unsure what you mean by your blood work was off for chemo drugs. Most people with CD have lab results that are out of the normal reference range because of the inflammation in their body. The meds you refer to help control the inflammation so that labs can stabilize.

Meds like Imuran, 6mp and methotrexate are used as meds for concern but at much higher doses.

Biologics like humira, remicade stelara are also effective in controlling the inflammation.

The therapy goal is to reach deep stable remission with mucosa healing. This cuts down on the risk of surgeries due to lasting inflammation causing permanent damage.
 

scottsma

Well-known member
Location
Tynemouth,
I'm sure we have a thread about smoking.Type in crohns and smoking in the search box at the top of the page.I know lot's of people are convinced that crohns / colitis started after they STOPPED smoking,and others who swear smoking helps.
I stopped 24yrs ago so I can't link ciggies to crohns.
 
Pentasa should not cause your CD any issues. If that's what your question was. Having ulceration and taking Pentasa is fine. In fact, in UC the inflammation and ulceration is in the top layer only and pentasa is used to treat it.


With CD the inflammation is transmural meaning it affects all layers so pentasa isn't as helpful. But is often used as an adjunct therapy.

Budesonide is a gut specific steroid used to get the inflammation under control while a maintenance med is started to take of when tapered off the Budesonide. I'm unsure what you mean by your blood work was off for chemo drugs. Most people with CD have lab results that are out of the normal reference range because of the inflammation in their body. The meds you refer to help control the inflammation so that labs can stabilize.

Meds like Imuran, 6mp and methotrexate are used as meds for concern but at much higher doses.

Biologics like humira, remicade stelara are also effective in controlling the inflammation.

The therapy goal is to reach deep stable remission with mucosa healing. This cuts down on the risk of surgeries due to lasting inflammation causing permanent damage.
Yes, I have Crohn's then developed some colitis in a different areas. I was wondering if anyone else had bad stomach cramps and vomiting while on Pentasa for Crohn's of the small bowel. I am on budesonide for 3 months to calm stuff down so the pentasa will help. Saw my regular doctor today whom said hopefully I just had a virus which irritated stuff. I'm going to retry the pentasa because the alternative meds are kinda freaky. Sorry if I confused you. Thanks for help.
 
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