Small intestin Crohn disease entocort failed now prednisolone

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

smallIntestinCrohn
New Member


Date Joined Apr 2018
Total Posts : 6
   Posted 4/30/2018 7:42 AM (GMT -6)   
Hi ! It's my first time there. I was lurking about crohn lately and beside reddit, it's a place where i end up often.

I'm 24 years old and i have been diagnosticed with a Crohn disease in my small intestin 1.5 months go after 8 years of medical wandering. The technic used was a "capsule endoscopy". Back in the day, after a non conclusive colonoscopy, they sent me back home with an IBS. My life have been pathetic since then.

So i first took a full month of entocort without some improvement but far from being conclusive.
So my GI put me on a 100mg prednisolone for 1 month. I'm on my 3rd day. I weight 251 lbs (114kg) but 1 month ago i was 279lbs (127kg). I try my best to eat better and do a 1 hour walk every day.

But prednisolone doesn't work (yet?) and it make me nervous. Some of the thing that improved a bit with entocort came back. And side effect are adding up like hearth issue. Yesterday night, i had some heart issue. Like by bitting was lowering and some time i had the feeling just like you're going down from an elevator .

With it not working, i'm afraid i may not have crohn... But pictures from the caps clearly show crohn like stuff. My calpotectin was 120 and +600. I don't have parasites. I have the feeling that 8 years is not enough for some one or some thing and the cosmic joke will not stop until i die.

My simptoms are:
Mucus, diarrhea (especialy after eating), gaz, my anus feel hot, my coccyx hurt a bit, fatigue, headache, no safe food, dry eyes, some heart issue that started exactly at the same time 8 years ago with my diarrhea.

I tested vitamines and i'm in deficiency of D(was 10.9) and a bit of A(was 400 some thing). I'm taking D, calcium, A and B12 (was 300 some thing), and omega 3.
I will get tested next for the same plus B9 i didn't know about.

Post Edited (smallIntestinCrohn) : 4/30/2018 7:54:43 AM (GMT-6)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted 4/30/2018 11:14 AM (GMT -6)   
Welcome to the forum. Sorry to read about the dx, however, now you know what you are actually dealing with. The very best tip I can offer you is educate yourself about the disease. One of the best sites to learn about crohns at is CCFA.org. The better educated you are about the disease & medications used to treat it, the better off you will be. Many years ago, my gi gave me that website & said you will learn more there than anything I can tell you. The information there is accurate & reliable, the internet is full of garbage.

Entocort is a medication used to treat mild to moderate disease. Did your gi say what extent yours is & where it is located? This is info you need to know. Since the testing confirmed crohns, perhaps you are in a little denial. This often happens to us in the beginning. Also, the scope does not show the entire small bowel. Pred will not have you feeling better in 3 days. Treatment is not a one size fit all thing, it is finding a medication that you respond to. Keep in mind, steroids are not good for long term management. They come with their own side effects that are not good. They can help get a person over the hump & help calm things down. I am going to guess you will be seeing your dr again pretty soon.

You mention heart issues & I am going to assume you have seen a cardiologist to be checked out. Not sure what heart issues you are talking about.

Hang in there.
Susie
Moderator in Chronic Pain & Psoriasis Forums

smallIntestinCrohn
New Member


Date Joined Apr 2018
Total Posts : 6
   Posted 4/30/2018 12:20 PM (GMT -6)   
straydog said...
Welcome to the forum. Sorry to read about the dx, however, now you know what you are actually dealing with. The very best tip I can offer you is educate yourself about the disease. One of the best sites to learn about crohns at is CCFA.org. The better educated you are about the disease & medications used to treat it, the better off you will be. Many years ago, my gi gave me that website & said you will learn more there than anything I can tell you. The information there is accurate & reliable, the internet is full of garbage.

Entocort is a medication used to treat mild to moderate disease. Did your gi say what extent yours is & where it is located? This is info you need to know. Since the testing confirmed crohns, perhaps you are in a little denial. This often happens to us in the beginning. Also, the scope does not show the entire small bowel. Pred will not have you feeling better in 3 days. Treatment is not a one size fit all thing, it is finding a medication that you respond to. Keep in mind, steroids are not good for long term management. They come with their own side effects that are not good. They can help get a person over the hump & help calm things down. I am going to guess you will be seeing your dr again pretty soon.

You mention heart issues & I am going to assume you have seen a cardiologist to be checked out. Not sure what heart issues you are talking about.
Hang in there.


Hello, first thanks you ! I'm informing me all the time since i have been diagnosticated. I know about corticoïd, 5-ASA, anti TNF, immunosuppressor...
My Crohn is mostly in my Ileum, the last part of my small intestin. My official GI didn't analyse herself the pictures produced by the capsule endoscopy intervention. I did it in an other place where they had the materials.

She only got the resume with some exemples pictures saying it was a "typical" Crohn.
Because it is in the small intestin, i was prescribed entocort. But after 1 month, i still had all my issue.

about my denial, i'm suffering for 8 years and it completly destroyed my scholarity and my quality of life.
Having some one saying to me i had a real disease with medication, it was the best day of the last 8 years. But failing my entocort was not good for my mood... I know prednisolone work most of the time really well.

I'm seeing my Doctor in one month. The only directive i had was to take 100mg of prednisolone, don't eat to much salt and sugar, and take my vit D + calcium.

Concerning my heart, i never saw a cardiologist. The only guys i saw about this was a general doctor who said to me "You can hear your heart beat ? it's normal, it can happen. You heart have palpitation and some sort of beat skip, it's not bad".
My digestive issue happen exaclty at the same time of my heart issue (maybe 1 day max interval).
And before this, i had, and still have, urination issue (peeing to much but and specialist didn't see any thing special. Saw him only 1 time).

Prednisolone is giving me more heart issue. For exemple last night, i had the same sensation as you are in an ascensor that is going up or down. It lasted like 20-30mn. The issue is i get stress easly... So when i have crap like this, it got worst because of me.

Post Edited (smallIntestinCrohn) : 4/30/2018 12:24:21 PM (GMT-6)


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1907
   Posted 4/30/2018 4:17 PM (GMT -6)   
You've been on a very rough ride indeed. You should have had a more definitive diagnosis a long time ago. Curious to know if they did biopsies during your colonoscopy?

Steroids usually work to get you feeling well very quickly, but you need to wean off of them, and not stay on them for more than about 8 weeks. Very harsh drug. You'll have much more success transitioning to an anti-TNF. I would strongly consider Remicade at this point for you.

Most Crohn's patients that are recommended for anti-TNF therapy react with tremendous fear. This class of drugs does have the potential for side effects, but the initial fears have really been put to rest now that the drugs have been studied in IBD patients over the last 15 years or so.

Crohn's is a very serious disease when improperly treated. It can be managed very effectively for most though. You need to have a tailored treatment plan for you as soon as possible.

Hope your feeling better soon. Keep us posted, and try to get your next appointment moved up. If you don't have confidence in your current GI, you will need to get another opinion.

smallIntestinCrohn
New Member


Date Joined Apr 2018
Total Posts : 6
   Posted 5/1/2018 12:42 PM (GMT -6)   
73monte said...
You've been on a very rough ride indeed. You should have had a more definitive diagnosis a long time ago. Curious to know if they did biopsies during your colonoscopy?

Steroids usually work to get you feeling well very quickly, but you need to wean off of them, and not stay on them for more than about 8 weeks. Very harsh drug. You'll have much more success transitioning to an anti-TNF. I would strongly consider Remicade at this point for you.

Most Crohn's patients that are recommended for anti-TNF therapy react with tremendous fear. This class of drugs does have the potential for side effects, but the initial fears have really been put to rest now that the drugs have been studied in IBD patients over the last 15 years or so.

Crohn's is a very serious disease when improperly treated. It can be managed very effectively for most though. You need to have a tailored treatment plan for you as soon as possible.

Hope your feeling better soon. Keep us posted, and try to get your next appointment moved up. If you don't have confidence in your current GI, you will need to get another opinion.


Hello, i didn't had a biopsie for my small intestin crohn, only the capsule endoscopy with picture:/
And generaly GI here take some time 3 months to have an appoitment.
Like i said, for now, i have a 100mg treatment but i'm only taking 80mg because of the side effect it is causing to my heart. I'm on my 4th day and it still doesn't work :/ Will see but until i don't see improvement, i will not be optimistic :/

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1907
   Posted 5/1/2018 3:57 PM (GMT -6)   
Could you attend you local hospital? Some will have a GI on call for emergencies. It sounds like you really need to see a GI sooner than 3 months.

smallIntestinCrohn
New Member


Date Joined Apr 2018
Total Posts : 6
   Posted 5/2/2018 12:03 PM (GMT -6)   
Hello ! One of my Crohn symptoms is having my anus 'hot' when i site on some thing 'hard'. It happen too after a more longer time on some thing more soft. I don't know if it's poop/mucus/some sort of leaky gaz not so far or some thing called Hemorrhoid. Because my Crohn is not under controlled, it could be it still... When i'm 'pushing' some thing out, my anus is not like when i'm doing nothing. The pushing part is blowing a bit like a ballon. It's in 3 parts. It's like i have extra skin coming from nowhere all around my anus. And if i 'hold it', it is a lot of less hot. I did colonoscopy once and nobody talked to me about it, neither did i of this symptom. I just wanted some indication from you guys :/

smallIntestinCrohn
New Member


Date Joined Apr 2018
Total Posts : 6
   Posted 5/5/2018 12:34 PM (GMT -6)   
I have an other issue.
The first 1 seconde is ok but the rest is somewhat hard to achieve when i'm breathing. Like i switched from breathing on the beach to a bag. I feel some thing is blocking my breathing and pressing in my middle upper back. I have this since 3 days. It come and goes. The next day, i took my meds at 8h15, and i started to have this around 14h. Today, i'm having it right now at the end of my day.

The more it goes, the more i feel a low pain and pressing in my middle upper back even when i'm not breathing.

It always stop eventualy.

I would like an advice too, how long can it take to make thing going noticiably better ? is it reasonable to take 80mg (originaly 100mg) for a full month ? and when should i contact my GI ?

Thanks. Would appreciate a response about this as it's troubling me :/

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted 5/5/2018 3:14 PM (GMT -6)   
Hello, I would contact the dr now since you are having breathing issues. If nothing else get a hold of your primary care dr if the gi will not see you very soon. I don't know why you are having breathing issues but it should be addressed now.
Susie
Moderator in Chronic Pain & Psoriasis Forums

smallIntestinCrohn
New Member


Date Joined Apr 2018
Total Posts : 6
   Posted 5/9/2018 5:42 AM (GMT -6)   
straydog said...
Hello, I would contact the dr now since you are having breathing issues. If nothing else get a hold of your primary care dr if the gi will not see you very soon. I don't know why you are having breathing issues but it should be addressed now.


Hi, breathing issue/pain are more controled. It really depend of the quantity i eat even if it's not technicaly bad. But i'm on my 1 week 5 days and nothing really better ... Drinking water are acting a bit like laxative when i control to much what i eat and since 2 days i'm basicaly eating only turkey (cook with water only) and natural tuna...
I'm very deeply depress and i don't want to do any thing... Some people start to feel better in just 3 days max but me, destiny is still ****ing me again. I'm pretty sure in 2 weeks i will still be like this.

Post Edited (smallIntestinCrohn) : 5/9/2018 5:49:13 AM (GMT-6)


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1907
   Posted 5/9/2018 3:18 PM (GMT -6)   
I would second straydogs post. You need to at least get in to see your Primary care Doctor. If you're not able to do that, then go to emergency at your local hospital. You really need to get checked at this point.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.
Started Remicade in Feb. 2014, along with 100mgs. of Imuran.
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, June 21, 2018 4:39 AM (GMT -6)
There are a total of 2,974,052 posts in 326,245 threads.
View Active Threads


Who's Online
This forum has 161226 registered members. Please welcome our newest member, echevarriacarisa.
288 Guest(s), 4 Registered Member(s) are currently online.  Details
SantaZia, 900312611, Saipan Paradise, GuitarHunter