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MiJo

MiJo

Joined
Nov 4, 2017
Messages
43
Hi, I was diagnosed with Crohn's in 2017, had one flare up since being diagnosed in Dec 2018/Jan 2019, and another one that has been on and off since this June 2019. This current flare up has pretty much been ending as of this week since I am on a higher dose of steroids. I'm pooping normally finally and starting to feel like myself again little by little. I am being tapered off the prednisone slowly this time.

Last month, my GI switched me from mesalamine to immuran (probably spelled that wrong) since mesalamine clearly wasn't working anymore. He had me stay on mesalamine for a month though while taking immuran at the same time. Two weeks ago, I finally finished tapering of prednisone as I have been on it off and on since this June. Well, the day after I finish it, I start having a flare up again. For me, flare ups are on and off (not constant) stomach pain and I feel relief when I pass gas or stool (which soon becomes diarreah-ish as it gets worse).

So I see my GI on Monday one week ago, and he puts me back on prednisone for that flare up that just started while taking me off mesalamine. Still taking immuran though. Well two days later, I wake up on Wednesday of last week with terrible nausea and vomiting, little stomach pain and diarrhea (as I was still treating that little flare up). I end up going to the ER and being admitted to the hospital. This was my first hospitalization and I was so scared. I was there for four days.

I ended up having an endoscopy and turns out I have gastritis. It was severe. Some doctors say it was the prednisone (which is a catch 22 because I still have to take it) and some say maybe it was my stress and diet (both of which have been bad lately) my GI thinks it was the immuran as he tested me this week for my lipase and amylase. Turns out both were high and so now he took me off immuran. I'm back on mesalamine again and next week I'm to call him to see how I'm doing and then he is likely to put me on biologics.

I'm scared I have never done biologics before. I don't know anyone else in my family with crohns disease and I feel very alone in this as when I look up on the internet to find someone similar to me, its just worst case scenarios. My GI says I can choose between infusion or injections. Which is better? Anyone out there with similar story to mine? By the way, I am being treated for the gastritis and I am working on being stress free and having a better diet as well.
 
Hello MiJo,

My Crohn's is not exactly like yours, but I do know what it feels like to face going onto biologics after battling the disease for several years while trying to avoid biologics. Back then I felt like the biologics were the "heavy artillery," and I constantly questioned whether they were really necessary. But my previously mild Crohn's had acted up and landed me in the hospital undergoing heart surgery because the Crohn's had attacked my pericardium in an extra-intestinal manifestation.

So I went on Stelara two years ago, and I haven't regretted it all. I wish I'd done it sooner - before the pericarditis struck. The injections are easy and almost completely painless. Only the initial loading dose needs to be given by infusion. The Stelara has kept my Crohn's in remission and I haven't had any of the scary side effects you read so much about online.

So based on my experience, I recommend injections over infusions, since it is so much easier and more convenient to just inject yourself at home rather than interrupt your day for a trip to an infusion center.

In any case you are not alone. There are many on this board who have previously trod a path similar to yours and understand what you are going through. You can always find lots of support and advice here.
 
I had humira and cimzia through injections. Hated the "snap" of Humira- my hand would always jerk at the sound- My sister used to hold the wand to make sure It connected- I have heard they changed it since and you can get a type that does not SNAP now. Cimzia was fine- self injections and no issues at all. I prefer the infusions I have now for remicade. every 6 weeks the nurse comes to my house and for 2-3 hours I nap and it is done. no issues at all. I still have partially blockages when something gets stuck (narrowing from prior surgeries) but usually I can clear them myself ( miralax, tramadol- oxy 5MG if unbearable and about once every other month I have a run to the ER for a morphine drip until the blockage clears- inpatient 12 to 24 hrs then back home and colon rest for a day or 2 and normal until something else gets stuck in a few weeks. good luck. Everyone has different problems to work on.
Dyana
 
Thanks so much for replying Scipio. I really am nervous about the biologics. My GI was thinking Humira or the generic of it. He did say that infusions work faster but injections do seem much more convenient. It's good to know that you haven't regretted going on Stelara and that you have been in remission since.

Thanks for the support too. I know everyone's case is different but that is what makes it feel lonely at times with this disease. It's even taken me up to being hospitalized last week to accept that I have Crohn's. I always felt like maybe I was misdiagnosed but unfortunately I am most certainly not. Good to know people can understand what I'm going through though :)
 
Dyana said:
I had humira and cimzia through injections. Hated the "snap" of Humira- my hand would always jerk at the sound- My sister used to hold the wand to make sure It connected- I have heard they changed it since and you can get a type that does not SNAP now. Cimzia was fine- self injections and no issues at all. I prefer the infusions I have now for remicade. every 6 weeks the nurse comes to my house and for 2-3 hours I nap and it is done. no issues at all. I still have partially blockages when something gets stuck (narrowing from prior surgeries) but usually I can clear them myself ( miralax, tramadol- oxy 5MG if unbearable and about once every other month I have a run to the ER for a morphine drip until the blockage clears- inpatient 12 to 24 hrs then back home and colon rest for a day or 2 and normal until something else gets stuck in a few weeks. good luck. Everyone has different problems to work on.
Dyana
Click to expand...


Thanks for replying Dyana. Good to know that Humira has improved a bit since you last tried it. That is likely the medication I will be put on. Does the nurse stay with you in your house while you nap? Sorry to hear about having to run to the ER for a blockage, that must be a pain. Yes, you are right everyone has different problems to work on for sure.
 
I would recommend Stelara as your first biologic to try. 1 infusion to start then an injection every 8 weeks. I have 2 daughters on it and both in remission. Our GI docs say Stelara becoming the first choice in their practice. Need to get started on it while you taper off the prednisone.
 
Thank you Ricky_V for your suggestion. I will definitely ask my GI about Stelara. Good to hear your daughters are in remission. It's very promising to hear stories like this. :)
 
Talk to your Gi
Most insurance in the US won’t cover Stelara or entyvio as a first biologic due to cost

Typically they use humira /remicade first

Ds is currently on Stelara and doing well for the past two years
He was on humira for over 5 years
And remicade before that
He was dx at age 7
 
MiJo said:
Thanks for replying Dyana. Good to know that Humira has improved a bit since you last tried it. That is likely the medication I will be put on. Does the nurse stay with you in your house while you nap? Sorry to hear about having to run to the ER for a blockage, that must be a pain. Yes, you are right everyone has different problems to work on for sure.
Click to expand...
Yes, the nurse mixes the remicade and sets up the IV and monitors the entire time. Very relaxing.
 
my little penguin said:
Talk to your Gi
Most insurance in the US won’t cover Stelara or entyvio as a first biologic due to cost

Typically they use humira /remicade first

Ds is currently on Stelara and doing well for the past two years
He was on humira for over 5 years
And remicade before that
He was dx at age 7
Click to expand...


Thanks for replying my little penguin, good to hear your son has been doing well with biologics. I will definitely ask about Stelara, seems like most of y'all use that.
 
My daughters have been on Remicade, Humira, and Stelara. I have not had any issues with the insurance companies covering anything the GI docs wanted to use. Also, the price for all three was roughly similar... if you have insurance then you pay $5.00 per injection. I would say push for Stelara as your first biologic as my experience is that Humira and Remicade have more side effects. Remicade may be better for fistulas though if you have them.
 
Ricky_V said:
My daughters have been on Remicade, Humira, and Stelara. I have not had any issues with the insurance companies covering anything the GI docs wanted to use. Also, the price for all three was roughly similar... if you have insurance then you pay $5.00 per injection. I would say push for Stelara as your first biologic as my experience is that Humira and Remicade have more side effects. Remicade may be better for fistulas though if you have them.
Click to expand...

Thanks for your suggestion, good to know you didn’t have trouble with insurance and biologics. I’m going to make sure to ask about stelara next week when I speak to my GI. I’ll update here too.
 
Stelara was my first and so far only biologic for Crohn's. My insurance covered it without any fuss.

I think your doc just needs to justify to the insurance company why it is the best one to start with (assuming she/he believes that is the case).
 
Scipio said:
Stelara was my first and so far only biologic for Crohn's. My insurance covered it without any fuss.

I think your doc just needs to justify to the insurance company why it is the best one to start with (assuming she/he believes that is the case).
Click to expand...


Thank you Scipio, I will make sure to ask my GI today about Stelara, have heard only good things about it on this forum so far.
 
Just wanted to give an update in case anyone was wondering. I haven't been able to see my GI, he was on vacation last week and right now he is working on getting a biologic for me authorized with my insurance. I hope to hear from him soon this week but I will be sure be seeing him next month. So, I don't know when I will start Humira or Stelara. Don't know which one he is going to put me on.

I'm still on mesalamine and prednisone right now and so far feeling good. Found out I'm also sensitive to gluten, wheat, and dairy. Life is really not fair! When I found that out I felt like I was being kicked while already down. Anyways, I can't complain. I will update again soon when I know what the next steps for me are.

Thanks again everybody for your advice, I really appreciate it and it helps me a lot. :)
 
MiJo said:
Just wanted to give an update in case anyone was wondering. I haven't been able to see my GI, he was on vacation last week and right now he is working on getting a biologic for me authorized with my insurance. I hope to hear from him soon this week but I will be sure be seeing him next month. So, I don't know when I will start Humira or Stelara. Don't know which one he is going to put me on.

I'm still on mesalamine and prednisone right now and so far feeling good. Found out I'm also sensitive to gluten, wheat, and dairy. Life is really not fair! When I found that out I felt like I was being kicked while already down. Anyways, I can't complain. I will update again soon when I know what the next steps for me are.

Thanks again everybody for your advice, I really appreciate it and it helps me a lot. :)
Click to expand...
Diet wise have a look at perfect health diet on the web. It avoids gluten, wheat and milk. I went on it in April this year when I was really ill, I also swapped meds from remicade to entyvio so not sure how much impact diet had, but I haven't been as ill since. My advice is find a breakfast and lunch you like that's gluten free if you're used to toast/ sandwiches (bacon, eggs, smoothies, jacket potatoes, fried rice, salads, soup, cheese and fruit) and eat a good amount at both in order to keep the wheat/ gluten snack cravings at bay. Also check your food labels as gluten is in all sorts of things you wouldn't expect, e.g. some brands of sausages, chocolate....
Good luck.
 
Thanks for your advice Delta_hippo, this is something I have been looking into. :)

My GI ended up calling me today after I updated on here earlier today and said that although I shouldn't drink milk, he thinks I can eat gluten and wheat because he doesn't think food has anything to do with what I'm dealing with. I am limiting my gluten and wheat though but I love it to much to get rid of completely. I am also definitely following his advice and avoiding cows milk as much I can though. My only question is if I can still have cheese and ice cream or is it the same as cows milk?? This is all so new to me. He only said to not drink it milk...

My GI also wants me to have a colonoscopy next month and get started on biologics next month when I see him. Right now I'm only on prednisone and mesalamine and he has stopped my gastritis medication today as he thinks that what landed me in the hospital was an allergic reaction to Immuran and not gastritis.

I have been feeling okay so far so I am hanging in there! :)
 
Good. Keep hanging in there.

I think you will feel a lot better once your doc gets you on the right biologic and off prednisone.
 
The best replacement for cows milk is Blue Diamond unsweetened vanilla almond milk... also you need to stay on your GI's office to get your insurance approval underway. A lot of time these docs pass this off to their assistants and you need to follow-up to make sure it gets done timely. Colonoscopy should already be scheduled. My point is time is not on your side and biologics take time to get working.
 
Thanks Ricky_V, i will definitely be calling them with updates until I get some answers. I’m so ready to be in remission. I have had this flare up on and off for the last five months.

I’ll give the almond milk a try. I bought rice milk but haven’t tried it with cereal yet. I’m still wondering if I can have cream cheese or cheese slices for sandwiches.
 
As far as milk products - try to get more information from your Gi office
Are you lactose intolerant?
In which case lactose free milk products - cheese etc may be an option deletion how intolerant you are
Some are ok with lactaid
Others tolerate no milk products including cheese

very important to get clarification
There is silk (soy ,almond etc milk ) even oat milk
Anything is better than rice milk
Rice milk is not recommended anymore due to arsenic levels

good luck
 
Thanks for your suggestion my little penguin. I will be calling my GI office today to ask if I can still eat cheese and cream cheese. I hope they say yes. No, I'm not lactose intolerant. Seems I'm just sensitive to cows milk, gluten, and wheat. Although my GI said I could still eat gluten and wheat though. I am limiting them though but definitely avoiding cows milk for now. That's a shame about the rice milk. I just bought it too. I think I'll finish it and then switch to almond milk when I'm done with it.
 
Hi MiJo, you really don't have to worry about the arsenic in the occasional rice milk. It's more for babies and children that it should be avoided. I have rice milk, soy milk and oat milk at home and use all three. You would have to drink a lot of rice milk and I mean alot, to worry about the arsenic levels.
 
Thanks for the reassurance Jo-mom. I’ll definitely use up the rice milk, I tried it with some gluten free cereal this morning and I liked it a lot. I’ll try unsweetened almond milk next time though.

Well I talked to my GI office today and I got approved for humira today! That was quick, I thought it would take a couple weeks for some reason. So first I have to get TB tested and then a nurse will come see me to show me how to inject myself. So I should be on it in the next two weeks or so. I’m not too worried about it, just nervous I guess. I’m hopeful that this will put me in remission. I was also told to just go dairy free. Oh well, I can’t complain. I really want to be healthy.
 
Most insurance in the US have preferred brands they required you to fail first based on cost
Humira for adults is typically first
Remicade typically is first for kids just because it was approved for kids first (but now that humira is approved as well ...)
After that they might entertain Stelara or entyvio
 
my little penguin said:
Most insurance in the US have preferred brands they required you to fail first based on cost
Humira for adults is typically first
Remicade typically is first for kids just because it was approved for kids first (but now that humira is approved as well ...)
After that they might entertain Stelara or entyvio
Click to expand...


That's interesting to note. I'm not surprised it has to do with cost. I hope it doesn't fail for me though.
 
Humira works well Ds was on it for over 5 years
Remicade works well too (took that one for 8 months but had an allergic reaction twice- however he is an allergic kiddo )
Stelara is “ok” Ds needed higher frequency but has been on it for 2 plus years
He was dx at 7 so different phone one type (veo ibd)
 
Thanks for the reassurance my little penguin. I'm feeling very hopeful to trying it and getting into remission. Good to know it worked well for your son. :)
 
Hi everyone, just wanted to give an update in case anyone was wondering. I took my first two Humira injections today! A nurse came to my place and helped me and answered all my questions. So far I'm feeling good and am not too worried anymore about being on a biologic. My next injection is in two weeks. I really help this works out for me.

Thanks everyone for your advice and reassurances. I really appreciate it! :)
 
P.S my colonoscopy is scheduled in two weeks I forgot to add. This will be my 3rd colonoscopy since being diagnosed. My GI wants to see if the Humira is working and so forth. Please give me good wishes and prayers that everything works out!
 

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