Fearful of starting Entocort

[SarahBella629]

Hey everyone, I have been dealing with what I was told (by a GI) was IBS for 11 years now. My symptoms have gradually worsened over the years and I was just diagnosed with mild Crohn's last week after a colonoscopy and biopsy. My GI also said there is other inflammation that he can't figure out.
He had someone from his office call me with my results and to tell me that he called in an RX for Entocort and I needed to start it right away. That was it, no meeting with me to talk about any of it or go over options. Just take this drug, we will check on you in a month.
I immediately got online and started researching Entocort, if I am being told to put meds in my body I want to know everything about it that I can first. I am not liking what I am reading at this point. I know it's a "lesser evil" in comparison to Prednisone, but the potential side effects of the Entocort sound like they would be more miserable than just dealing with my Crohn's. I know my body and I tend to gain a lot of weight with anything that has that as a potential side effect, I have been struggling with trying to lose weight for over 7 yrs now and have only recently started having slow success with that in the gym. I really don't want to deal with more weight gain due to meds. I already struggle with insomnia, bouts of feeling down, moodiness etc. I am fearful that going on Entocort will only make these things worse. Am I crazy for feeling this way? Everything Crohn's is so new to me, not the pain and symptoms, but knowing and having a specific diagnosis to be able to deal with it correctly. I talked to a nurse at my GI's office and explained my concerns and said I don't want to take it, that I wasn't going to pick up my RX. We discussed my wanting to try to deal with it without meds for now, with it being mild, with supplements, strict diet (figuring out what works and doesn't work for me etc), staying active in the gym etc. She was very understanding and supportive. A few days later I got a call from a different nurse and she told me my GI wants to meet with me to discuss things. He said "Entocort is not as bad as the steroids he knows I looked up." I let her know that everything I researched was for Entocort specifically since that is what he wanted me to take. Anyways, my appointment with him is tomorrow morning, I am feeling a bit nervous about it, worried he is just going to push meds on me rather than working on helping me figure out what to try without meds first. Has anyone else gone through something similar? Have any of you had any kind of success through diet, exercise, vitamins, supplements, essential oils?
Sorry this was so long, but thank you for reading and any advice you have!!

 

[RNGirl]

Hi SarahBella629,

This is my first post. Felt I needed to respond to you because I have had similar experiences and newly diagnosed with Crohn's as well.

I had a random colonoscopy 3 years ago which indicated 10cm inflammation in my terminal ileum. No symptoms what so ever and GI doc said to stay the course and forego starting treatment. I had a follow up colonoscopy this year. Once again no intestinal symptoms, but many extra intestinal issues (joint pain etc). No change in the damage to my terminal ileum either. Didn't see the GI doc after the scope, instead saw his PA who immediately started me on Entocort. I felt rotten on it, had foot and leg cramps, started growing hair on my face, depression etc. Yes, it is a steroid and I have a pure system so to speak so meds really affect me in a big way. I was on it for 4 months and continued to wean from it while I was started on Pentasa. As it turns out, I was allergic to Pentasa and became very ill on it. Took me about 5 weeks to get it out of my system. I lost 15 pounds, was dizzy, ringing in my ears, no appetite etc. Missed 2 weeks of work, thought I was circling the drain. GI doc said Pentasa is like taking candy and "everyone" tolerates it!
I decided to take control of my disease and stopped all of the toxic meds they were giving me.

My GI doc dispelled my notion that the meds were making me toxic and said if these 2 meds didn't work the next step was Imuran. Really??? Not tolerating meds and very sensitive to everything and pull out the big guns? I Let him know I had started the Paleo diet and was actually feeling better and he was livid. Said diet wouldn't cure me. Of course not, no "cure" for crohns but maybe diet may help me gain remission??

I have been on the auto-immune version of the Paleo diet for almost 4 months now. It was initially very hard and restrictive. I cried a lot. I am sure I had to detox from all the foods that were making me sick. All grains, dairy, processed foods, chemicals and sugars, eggs, night shades. I have dropped 25 pounds, look and feel great and feel I am healing from the inside out. I am eating all organic, natural as much as possible. Probably eating better than I have in years.

Not saying this will "cure" me but making a huge difference for me and will continue with this diet while trying to add back foods on the regular Paleo diet.

Hope this was helpful and good luck to you!!

 

[Clash]

If your not comfortable with a med that is your decision. If you want to try diets, supplements or other avenues that is also your choice. The important thing is that you continue getting lab work, fecal calprotectin stool tests and/or imaging testing and stay in contact with your GI.

This disease can be insidiously silent and under treated or un controlled CD causes permanent damage to your bowels. This can happen with little to no symptoms if you have simmering inflammation. So it is very important to go for regular lab work, check ups etc.

Here is our diet section:

http://www.crohnsforum.com/forumdisplay.php?f=17

 

[SarahBella629]

RNgirl and Clash, thank you for responding, you were both encouraging!

I met with my GI this morning and I am definitely feeling bummed out at the moment. He told me that he isn't 100% sure my inflammation is Crohn's or something else entirely, but based on my years of symptoms he feels like it is. I guess my biopsy didn't give a clear diagnosis. He basically told me that everything I read about Entocort is not true and probably written by horribly depressed people, I had to keep my mouth shut on that one! He said not one of his patients has ever experienced any kind of side effects from Entocort and he has never heard of anyone experiencing symptoms from it. Which seems a bit crazy to me and really hard to believe.

He found a rash on my chest and back that he said is not disease related and he wants me to get that checked before I start anything and he put in for insurance approval for a pill cam. He wants to see more of my bowels to see if there is evidence of disease there. He wants me to take the Entocort for "about 3 weeks or so" as a way to try and figure out if I have Crohn's or not. He says if it makes me feel better then I have Crohn's, if it doesn't make a difference for me then we are likely dealing with something else. He then said if it is Crohn's that he will then need to put me on a combination of meds, he said biologics and some other type of major drugs that he knows I won't like or want to take, but that they will be absolutely necessary. I told him I don't want to be on a bunch of drugs and his reply was, "nobody WANTS to be on a bunch of drugs, but you just have to be. That's Crohn's. At some point in everyone's life they will end up living on pills for something, you're just starting that up in your 30's." He also told me that if the pill cam shows disease then he will skip the Entocort all together and go right to the major drugs, also not something I am comfortable with.

I feel really sad, confused, pissed off, hopeless, lost and stuck all at the same time. The thought of going on any of these meds makes me sick to my stomach. I didn't get to ask any of the questions I had written down, he saw my list in my hands and immediately took control of the entire appointment with all his drug and disease talk. I still want to try to get this in remission without drugs. I know if I deny the Entocort again he's going to get really upset about it, he is definitely coming across as a his way or the highway kinda guy. He's so nice too, it's really irritating lol. I told him IF I try the Entocort and I don't like it I am going to stop taking it he said that's fine, but I will dislike the other meds even more.

I kinda just want to cry at this point.

 

[Clash]

I'm sorry to hear what you are facing. There are several reasons why he may be pursuing the big guns if it proves out to be Crohns. First, they have been proven the most efficacious at full mucosal healing. Secondly, studies have shown starting biologics early after dx can lessen the risk of surgery and the risk for surgery for CD is pretty high.

I can understand this being overwhelming and the fear you have. My son was 15 at dx and it was suggested he go on remicade right away. This plus the tweaking of doses and addition of other meds did not stop the progression of his disease. At the time of surgery he had been completely asymptomatic for almost a year.

As scared as I was about the extremely rare side effects of these meds the fear of uncontrolled CD was worse. My son's disease is located in his small bowel and althought you can live without your large bowel you cannot survive without your small. So, having to face surgery at 17 puts him at an exponentially higher risk of further surgeries. He is back on a remicade and methotrexate in hopes that it can control the disease.

Before you make your decision about meds make sure you understand all the risks with under treated or uncontrolled CD. Make your decisions based on peer reviewed research and not anecdotal stories found on the web.

We take risks everyday, but we take the risks for quality of life. The risk of these serious side effects are lower than the risk of drowing or the risk of being in a fatal car accident. You really have to put it into perspective.

If you choose to not take your meds you still need to find a GI that will allow you to take your own path so you can have regular testing and checkups.

 

[SarahBella629]

Clash,
I am sorry to hear your son is going through all of this, poor kid!

Again, I really appreciate your reply, encouragement and wisdom. I will definitely be doing more research and looking into from all aspects. This is a lot to take in so quickly. I definitely am the type of person who needs a little time to wrap my head around things and I'm all about researching things so I feel like I can make the most informed decisions possible.

I am hoping the pill cam comes back showing nothing. I have a lot of reasearching, thinking and praying to do in not a lot of time I guess!

I hope your son gets to feeling good really soon!

Sarah

 

[Clash]

It is such a steep learning curve and you are expected to dive right in, it is so overwhelming! But I promise it does get better.

Concerning diets there are members here that follow the SCD diet, the Paleo diet, fodmap, and others that choose low residue when flaring to help with symptoms.

The first line of defense is usually steroid to quell the inflammation then various maintenance meds to control. There are some who have chosen EEN(excusive enteral nutrition) over pred. It has about the same efficacy as pred at quelling the inflammation but I think the studies showed it is more effective in children. Anyway, it is the intake of formula only for a set amount of time. It can be otc formulas like boost or ensure or px'ed formulas from your GI. Some choose to drink it and others choose a naso gastric tube. My son chose the ng tube and would insert it each night, take in his formula, then remove it during the day. He didn't like that the steroids made him boated(its water weight that leaves once you taper off) nor did he like the acne the pred caused. Lastly, pred doesn't work for him so if he needed it again he would do EEN.

It's a lot, it's hard to do but don't let all the research drive you to stress. You make the best decision for yourself at the time and move forward! HUGS.

And my son, C, is doing good. He is under weight and may have more trials ahead but he is a warrior. Honestly, he says the small bowel surgery was a piece of cake compared to the flare he was in at dx.

Please look through the diet forum, there is a lot of info there!

 

[Lenardm2]

Entocort was a lifesaver for me. I have come off of the colazol I was on because nothing else was working and I have retained a great quality of life on it. It is probably very frustrating for you since you had no idea anything was even wrong, but the Entocort really isn't bad. I've had a few of the symptoms like leg cramps but it's not a constant thing and it is so much better than plain steroids. Hope this helps, hang in there.