Entocort FAIL

kitty16 · Post by **kitty16** » Fri May 04, 2012 4:36 am

Hi all,

Coming here for a hand Pat and of course info. So after 12 weeks of 9mg of Entocort I'm not better, in fact had some days, as I have mentioned in other post, with bleeding and mucous, which I have never had before and multiple, mushy BM's

I see the gastro on Tuesday and as per out last conversation I will most likely be starting prednisone. I will also find out the result of my blood work as per ulcertive colitis. What should I expect, my PCP, who I trust very much said that is the drug of choice. I will take anything if it will help this nightmare is that what will happen will I get relief. How bad are the side effects does everyone gain weight. I'm already overweight.

My PCP also casually threw out well we are all trying everything so you can avoid surgery. WHAT!!!!! no one ever mentioned surgery is this true if I don't respond to prednisone is this what will happen.

Thanks for listening It always feels better to be able to talk to others about what is going on especially those who are in the same situation.

Hugs,
K

CathyMe. · Post by **CathyMe.** » Fri May 04, 2012 5:58 am

Hi Kitty,
I'm so sorry that the Entocort did not help you! I myself had relief after 2.5 weeks and have now tapered down to just 1 pill a day with normans. I have also gone GF/DF. My older brother was diagnosed with ulcerative colitis and was on Remicade for a while which helped him immensely. He is now off the remicade and in remission after making huge changes to his diet, so there is hope. Did they mention Remicade? Let us know what happens Tuesday at your GI appt. Have you changed your diet at all?

Joefnh · Post by **Joefnh** » Fri May 04, 2012 9:32 am

Hi Kitty, sorry you are not responding to the Entocort. There are several options long before surgery. To start with keep in mind that the Entocort only works in the last part of the small intestine and the colon and it is possible to have the D starting higher up in the GI tract. There is a modest chance that you do not respond well to Entocort as well.

I know you mentioned possible UC which most likely was Dxd from the biopsies taken during a colonoscopy. Have you had any other tests done besides the colonoscopy? In my case a barium swallow with small bowel follow through detected Crohns disease in the middle part of my small intestine (jejunum) and a colposcopy with biopsies detected the MC(CC).

Prednisone would work well, but I'm sure will only be used for a short to moderate timeframe to help bring your symptoms under control. if diet cannot bring this flare and your symtoms under control long term, there are other medicataions that are used regularly. As mentioned Remicade is one and another common one is the one I take, Imuran. These medications and other similar ones work by slightly suppressing the immune system which treats the autoimmune nature of IBDs like UC or Crohns.

None of these medications are without risk but generally they are well tolerated and have been used for quite a while now. I find the Imuran a much better choice than long term steroid use and it does work fairly well. I did recently have a flare up which did require prednisone and then Entocort and it was just found out yesterday, that the reason of the flare up was that my levels of the active ingredient in Imuran were too low in my blood to be effective and that I needed to increase my dosage.

I have not had a chance to look back at your earlier posts Kitty, but have you had a chance to work with your diet as well? Have you tried eliminating gluten and soy and possibly dairy? There are also some good testing options for determining food intolerances form eithier Enterolab or MRT testing from Signet Diagnostics. I know in my case the diet is just as key of a component as the meds.

I hope you feel better soon and your doctors seriously start talking surgery as a treatment option this early I would encourage seeking a second opinion.

Take care

Leah · Post by **Leah** » Fri May 04, 2012 9:37 am

Oh no! So sorry to hear your news Kitty :( As Kathy has said, diet is a HUGE factor here. I was doing great on 6 mg of Entocort, but had a two week flare from ONE meal that was either too high in fat or had hidden gluten. Who knows what it was, but he fact is that even with the meds, the wrong foods can keep this disease at it's worst.

I don't know much about prednisone, but please let us know what the doc says at your appointment. Try not to panic.

Leah

raemckee · Post by **raemckee** » Fri May 04, 2012 9:47 am

I have started liquid imodium with the 9mgs Endocort (after week 5) and it looks like it may be helping (day 4). Maybe you could ask the GI about adding that or the pepto bismol trial with the Endocort before switching to prednisone?

marihabs · Post by **marihabs** » Fri May 04, 2012 3:10 pm

Kitty - I hope you feel better very quickly.

Joe - was there a reason you did the barium swallow? My GI suggested it, but didn't really seem to have a good reason for doing so.

Mary

Joefnh · Post by **Joefnh** » Fri May 04, 2012 3:27 pm

Mary the barium swallow small bowel follow through quickly helps look at the entire small bowel structure. It gives the doctor a clear picture of what if anything might be affecting the small bowel.

In cases of Crohns disease that manifest themselves in the SB you cannot usally reach them with an endoscope, by taking low power X-rays after swallowing the barrium solution it highlights the areas and provides a very clear picture if there is any fistulas or strictures forming. It will not however provide cellular level data like what can be obtained from a biopsy.

In my case I'm glad I did this as had I just had the colonoscopy with the MC that was found, I would have delayed treatment for the Crohns even longer. As it was, it was pretty bad as I had for years told myself the symtoms were no big deal. This unfortunately led me to having a portion of my SB removed just about a year ago now.

The other procedure that I also had was the pill camera which is an easy to swallow pill like device that has a small camera and light source that transmits images every couple of seconds to a belt you wear for about 6 hours.

kitty16 · Post by **kitty16** » Fri May 04, 2012 3:45 pm

Thank you all,

My diet is all over the place was doing GF, but had a reaction to an ingredient they commonly use. I react to anything that has splenda or other sugar substitute or the word GUM in it. Something I ate last week and was fine with will give me severe diarrhea this week. My colonoscopy in August 20011 was good, but my diarrhea continued so in January they did a sigmoidoscopy and that showed inflammation, ulcers and the biopsies MC. Last week the gastro ordered blood work to confirm UC and possibly crohns. I wrote down the medicines you are on,Joe will ask. My primary also said since my cholesterol is borderline high she can start me on something that will help with the diarrhea??? Soooooo confused.

Thanks again
hugs,
K

Joefnh · Post by **Joefnh** » Fri May 04, 2012 3:59 pm

Kitty as addressing the dietary issues helps MC, UC and Crohns I would start there first as the meds we are talking about are in the 'big guns' category. When needed they are a real help, but if you can avoid them by addressing diet first that would be the best solution.

Like you any of the gums cause me issues. What I have found helpful is preparing my own GF foods from scratch, they taste better and are better for you. I rarely have any GF foods that are pre-packaged. I think the only safe ones have found have been the King Aurthur mixes and the Udis breads.

I hope you can find relief soon, hopefully you can also address the diet as well. Even with the meds, you will feel far better, more energetic etc by addressing any dietary sensitivities.

Leah · Post by **Leah** » Fri May 04, 2012 8:17 pm

And don't forget Kitty, that there are many foods that don't cause inflammation, but do upset the intestines ( like the gums). I don't know if you eat any raw fruits or veggies ( including salad), but if you do, you should stop. Also anything with too much fiber (like beans, lentils...etc.) And for me, foods that are really high in fat. Dairy should be taken out too. I also have problems with tomato products right now. I know the list is long, but if you can find it in you to be really strict for a while, then once things calm down, you may be able to add some stuff back in. I just tried AMY'S GF/DF bean burrito and was fine :) - my first beans in two months! . For one week, try to eat only meats, cooked veggies, rice, and potatoes... and see how you feel. I think you will be pleasantly surprised :) Then you may not need to go on the heavy drugs.

Good Luck
Leah

kitty16 · Post by **kitty16** » Sat May 05, 2012 5:11 am

Thanks Leah,

I have not had a vegetable cooked or otherwise in at least 6 months, no salads, was never a big dairy person but cut out my cottage cheese and my yogurts. I also saw a connection with to much fiber. Also, again not much of a sweets person but notice when i ate a chocolate easter candies had D. I try to stick to chicken and rice (usually have cooked rice for breakfast because I can't figure what else to eat) but slip up often. I have said before I think Im in denial and will eat something just to prove Im ok. (we all know Im not). A year ago I had a normal life out with friends ate well now I decline offers to go out. I WILL wrap my head around all this. I have to I need to feel better.

Thanks you,
hugs
K

Leah · Post by **Leah** » Sat May 05, 2012 12:12 pm

Kitty, I'm so sorry to hear that this is all so difficult for you. I know what you mean about not going out. I do the same right now. We picnic a lot more :( Can you eat eggs? If so, a couple of scrambled eggs in the morning is good. I have found that either rice chex or corn chex with unsweetened almond or coconut milk also is a fast and easy breakfast. PS. The chocolate candy probably had milk in it.

Hang in there and keep us posted. I hope you find relief soon
Leah

Deb · Post by **Deb** » Sat May 05, 2012 4:20 pm

(usually have cooked rice for breakfast because I can't figure what else to eat) but slip up often. I have said before I think Im in denial and will eat something just to prove Im ok.

Kitty, I have only knowingly eaten gluten once since I discovered this site. It was about a month after I'd been gluten-free and before I got my Enterolab results. I ate a big bowl of noodles. I got violently ill. It proved to me that I couldn't eat it anymore and I have no desire to prove it again. I've learned that nothing is worth that kind of pain/reaction. I really enjoy cooking though and this whole thing derailed me. I'm happy to report I am back on track. My cooking is different but fun once again. It is still hard going to restaurants but at least it's good at home.

kitty16 · Post by **kitty16** » Sun May 06, 2012 4:23 am

Thanks Deb and all

So not matter what medicine I use I have to figure out what foods I can't eat and avoid them or the meds really wont help???

Joefnh · Post by **Joefnh** » Sun May 06, 2012 7:59 am

Kitty thats correct, there is no magic pill for this. The meds are really the most useful in cases of UC or Crohns which do cause damage to your GI tract, MC does not. Now if you have a case of MC that diet will not settle down, the meds are quite helpful and welcomed. The first and best medicine for MC is diet. Even with meds, you will still need to address the diet to achieve remission.