Was so(too!!)optimistic

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

vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 3/6/2010 5:48 AM (GMT -7)   
 
Feel like I have just crash landed!! So much progress with my son, huge weight gain, a sparkle in his eyes and more laughter (I had forgotten what he used to be like prior to going downhill) Currently decreasing the entecort/increasing the azathioprine and yesterday the stomach pain returns and today toocry  I could sit down and cry. Please I am not looking for sympathy it is not as if I have to personally suffer these symptoms I just feel so disappointed(for him). I guess that I was hoping that he would go into remission  and have a couple of years of relative ease. Think I need to take a reality check here
Thanks for listening

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 3/6/2010 7:27 AM (GMT -7)   
I'm so sorry. After a flare, you really hope for a long remission and some relief from the disease. Is he still supplementing with the enteral formula that originally helped him to get into remission? If so, maybe increasing the amount until he is completely off the steroid would help prevent the breakthrough symptoms, and by then the azathioprine might have started to kick in. Just an idea.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/6/2010 7:42 AM (GMT -7)   
You also have to remember that not all tummy problems are his Crohns. I just had a bad stomach virus last weekend for example. What is normally a 24 hour bug for my healthy husband, will knock me down for a few days. Remember with this disease too, that sometimes we can do something as simple as getting over ambitious with our diet one day, and then pay for it for a few days afterwards. Just watch him for a few days and see how it goes, if it continues to get worse talk to his doctor again about going back up on the Entocort for a few more weeks to give the Imuran more time as suggested by Writer. Also, sometimes when weaning steroids you will have a few bad days until his body adjusts to the reduction. Good luck and keep us posted. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 3/6/2010 1:27 PM (GMT -7)   
Thanks Writer, yes he is still on one a day plus a high calories shake on top of it. We have excess of the enteral formula so that may be worth a go. I did wonder whether the decrease/'increase in drugs may be having a knock on effect as they take a while to kick in.

Thank you too Nanners-I hear what you are saying and I wish I believed that it was a 'normal' upset but unfortunately I don't think it is. Gonna have to go and think back over the last few days about what exactly he has had to eat but he is pretty much a creature of habit in that he likes certain foods and will have them several times(if not more) a week. He is going to go nuts if the entecort is increased, think the thought of only approx 5 weeks left on it is what is keeping him taking it at the moment-he keeps asking if we can reduce it further yet!!

My apologies to all of you that have to go through this-I feel like a fraud as I don't have to suffer this disease myself. I am always strong/practical for my son but sometimes I just need to 'let it out'

Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 3/6/2010 1:45 PM (GMT -7)   
Same thing just happened to me. Finally feeling good and then weaned off Entocort and Bam! I was back to square one. Now I am back on the Entocort and feeling better again. My GI said that this time I should do a slower withdrawl. Reduce one Entocort every two months..... So far it seems to be working.

I hope your sons gets some relief soon.

Elizabeth
Dx'd with Crohns 1984
Polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, Endocort, Prednisone, Imuran, Folic acid, and Enalapril.
 


vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 3/6/2010 2:09 PM (GMT -7)   

Thanks for sharing Elizabeth. He is still on 6 mg(2 tablets) at the moment, was due to reduce down to one next  week(reducing by one every four weeks) He has had a few side affects on them, mainy a rash across his chest and plastered in acne(really plastered) he used to get teenage acne but we got that under control with brewers yeast soap which totally cleared it but it is not touching what he has got now. Maybe there is an alternative to entecort that he can take.

I  am so glad that it is working for you (hopefully without side effects :) )


John510
Regular Member


Date Joined Jun 2004
Total Posts : 226
   Posted 3/6/2010 3:16 PM (GMT -7)   
How old is he Vixen? Almost sounds like me when I was first Dx'ed at 14..im 20 now but I can relate to the weight gain..my GI would always be like take the high calorie shakes and im just like who wants to take in that many calories of anything when there stomach feels like crap...

Im on imuran and pentassa (was on entocourt but stopped) I think imuran will be good for him but like someone else said give it a couple days to adjust.

As far as the chest and acne go im in the same boat there also which sucks for my social life..look into the website acne.org...that stuff has helped a whole lot for my face its pretty much clear now aside for a few red marks

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 3/6/2010 3:31 PM (GMT -7)   
He may need to wean slower. I am weaning down on my prednisone and just had a few days myself where things were off. Bumped back up and things are better. Those nasty steroids just take time. sad
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 3/7/2010 2:07 AM (GMT -7)   

Hello John,

He is a few weeks off being 17 now and diagnosed Nov 09. He did need to put on some weight as he was so tiny(only just got rid of aged 11-12 t-shirts!) I knew that a side affect of entecort was acne but was not sure about the immuran-just had a look and it doesn't appear to have a side affect of acne (one small blessing). I will check out the acne site as it appears that entecort and him are going to get to know each other pretty well over the coming years.

Thanks Suzanne,

From all you experienced people it does appear that a slower withdraw needs to happen-not the best news for him but if needs must!

From what people have said am I right in thinking that when you have had this condition for quite a while that some of you (or all) are given the drugs but it is down to yourselves when to increase and lower the doses depending on how you are feeling.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/7/2010 7:34 AM (GMT -7)   
No vixen that is not totally true that we wean when we want to. Some of us just have more experience and know what generally works best for us, but we all always work with our doctors. I still say give him a few days to adjust to the taper and see how it goes. When I go down I almost always have a few bad days first, then my body will adjust. If its not better by the 3rd - 4th day, then go back up. Has he been on the Entocort since Nov 09? Maybe thats why he is having a hard time going down on it, because he has been on it so long. Just a thought. Good luck to you both!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 3/7/2010 7:36 AM (GMT -7)   
As far as changing doses on your own, it really depends on your doctor. I had been with the same doctor through out my entire time with this DD up until last fall. He was my GI originally but he was also a GP, as his practice grew, he farmed me out to a doctor who only did GI work but he was still my GP and the one who did most of my prescriptions. Since we knew each other so well, he was comfortable with me managing my prednisone on my own as long as I kept him informed. As he said, you know as much about how it affects you as I do. But now I have a new doctor and she is not nearly as comfortable with all my medications or prescribing them, so its off to the office much more frequently.

I think it is a matter of the patient/doctor knowing each other and a long term relationship. Sometimes things can be done over the phone, but sometimes the doctor wants to see you and other doctors just want to bill you.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 3/7/2010 1:48 PM (GMT -7)   
Gail,
No, believe it was end of Jan he went on to entecort( 3 x 3mg) and he has now been on 6mg for three weeks and due to drop down to 3mg next week(for four weeks) and then the plan was to finish it (heres hoping) I am assuming that the pain most likely means that there is still inflammation.
Suzanne, thanks for clarifying. I thought as much. It is refreshing to know that if you have a good relationship with who is looking after you that they will appreciate that you as a person will know what you need to take and when it is appropriate.
Son has been asking for weeks to drop his entecort further but that is because he hates the side affects and he and I are not in a position(knowledgeable enough) yet to be able to do this. Maybe a few more years down the line!!

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 3/7/2010 10:09 PM (GMT -7)   
Some drugs are actually dangerous to taper off too fast like prednisone, which is a steroid like entecort. I strongly remember my GI leaning across the desk, looking me straight in the eye and telling me "You are going to be on a fairly high dose of prednisone for a long time, do not stop it or you will die!" I wonder how come I remember that so well? lol
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 3/13/2010 3:58 PM (GMT -7)   
Vixen, do not feel guilty about having to vent. I know it is not you going through this but you are a Mom and it affects you. I am not a mother myself but I have a beautiful niece and 2 nephews and it would kill me to watch them suffer. I feel your frustration about him feeling better and then all of a sudden the symptoms come back. I just started treatment for mild crohns and am on 2 lialda a day. I suspect it is not going to cut it as some days I feel great,other days I just want to lay around all day and do nothing. Posting here is the best thing you can do for yourself and your son right now. You can vent and get out all your fears while remaining strong for him. I wish him the best of luck and hope he feels better soon.
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 02, 2016 11:10 AM (GMT -7)
There are a total of 2,731,690 posts in 300,951 threads.
View Active Threads


Who's Online
This forum has 151123 registered members. Please welcome our newest member, Joyce Apuzzo.
344 Guest(s), 9 Registered Member(s) are currently online.  Details
tennisplayer, Utah1981, Scaredy Cat, ArtAngel, Girlie, ChickenArise, Traveler, straydog, Graytech


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer