Does it ever end??

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

blessedby3miracles

blessedby3miracles

Joined
Jan 24, 2013
Messages
25
Hi Friends, It has been a while since I have been on here. Drew had his bowel recsection back in February and seemed to doing well. He gained his weight and no stomach issues. He looks fantastic has tons of energy and he even made our local baseball All Star team. I took him on monday for his GI appt and got a call the next day that some of his inflamatiion markers were elevated. She wants to to do scopes at the end of July to see what is happening. I was so sad:yfrown::I just feel like my worry and this nightmare will never get better. Every time I have hope that we are on the right path it sneaks back up on his. How do you all deal with these feelings? I even blame myself that I somehow gave him this?? I want us to live as normal life as we can and just know this is something we have to face but it is so hard somedays to stay strong. When you kids looks at you and says "Mom why do I have to have this?" When I see him scared and in pain is the worse!!Anyway if you could pray for us that would be great. I will take any advice. I'm praying all is well, and if their is a issue for them to switch his medicine to something that works we are still on the first medication Methotrexate but with all his progressing issue maybe we need something better. I appreciate this site.
 
Katie

I'm sorry that I don't have advice, because I'm new.

My 16 yr old daughter was recently diagnosed and had resection surgery this June.

I understand your concern and I'm sending prayers to you that all is well w/Drew. Hang in there.
 
:rosette2:Hi, I too live near Pittsburgh, so welcome! I don't have a child with crohn's. I was diagnosed in 2011. I just want to let you know I will pray for your son and you!
Hopefully he will go into remission. God is good!
 
Hang in there, Katie! My son had a small bowel resection in January and was flaring again in April. I remember feeling exactly the same way you are now. For us it took a change of meds and things have been going well since. Maybe he just needs his dose tweaked? Maybe he needs a new med? Just keep the good days when he was pain free, energetic and happy in your mind as your goal. He can have that again!

As for dealing with the emotions, I tell myself I can either waste energy worrying about it and feeling guilty OR I can use that energy productively to do what I can in trying to understand this disease. Knowledge is power, so when I'm feeling powerless, I read, read, read.

Here are a couple of links on post-surgical treatment to have a better understanding of what the future may hold:

http://www.medpagetoday.com/Gastroenterology/InflammatoryBowelDisease/12695
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1773309/
http://www.practicalgastro.com/pdf/May11/CollinsArticle.pdf

There is also a thread on grief that may be helpful:
http://www.crohnsforum.com/showthread.php?t=52802

Keep us posted on how he's doing...
 
Hi Katie,

I'm sorry you're facing this again. :( Everytime there's a new question, new symptom, change in med, it seems to bring all the original fears and concerns right back. :ghug: And, there is absolutely nothing harder than seeing your child in pain! You've got lots of support and prayers here to help you through some of the tough times!

It often takes some tweaks to dosage and/or changes in meds to find the right treatment to achieve and maintain remission. It seems your son's GI is on top of it and, depending on results from the scope, might possibly want to move ahead with some change.

Try to take it just one day at at time (so easy to say, I know... :(). Is your son feeling well? Or is he showing any symptoms now?

Sending hugs and prayers!
:ghug:
 
I really appreciate the support I have received today. It helps knowing I can come here for answers and help. It is so scary sometimes. I just pray we find something that works for him because the thought of more surgeries is terrifying to me. I just want him to be a kid for a while. He acts fine right now with no symptoms just the elevated inflammation which I don't really understand. When he had the blockage before his big surgery his blood work was great yet he was in bad shape. This time he acts healthy but now has elevated inflammation? Thanks for the love friends!!
 
My son is the same. For over a year, while MREs continued to show inflammation and CRP and ESR were gradually creeping up, he continued to look and feel good.

Sometimes inflammation can be simmering, eventually causing damage and not present itself through outward symptoms for a while. My son recently transferred to an adult GI and this new GI was adamant that it was important to get the inflammation eliminated asap. So, my son recently started on remicade.

It seems your GI is being cautious and hopes to prevent any further issues. Hopefully, the scope results will provide some answers and just a minor tweak to his meds will do the trick.

:ghug:
 
Katie,
Try not to worry. Look at it like this - my son IS doing much better and that is why we've been seeing this doctor. He has helped us a lot. Now we want to keep my son better so we are going to make sure that his meds are doing the best that they can so we don't go back to him being sick again. There is no cure for this disease. There will not ever be a time when you aren't wondering what is happening inside that you can't see, but you can take times of rest and reassurance by how he is doing day to day and see that he IS better now and that the docs are doing what is necessary to keep him that way.

Big HUGS to you as you work through this. There is so much for a mom to carry with this disease, but we're here too to help each other!
 
Living with Crohn's is like living in a firehouse. Even when things are calm, you know a call could come in at anytime. :(
 
:rosette2:First let me say you boy is just soooo cute. Your whole family is lovely also. I will pray for you all.

To answer your question of does it ever end....
Yes, :thumleft:then is starts up again,:thumbdown: then ends :thumleft:and so on and so forth.:yfaint:

Grace asked me once if her boo-boo (she's 4) will ever go away.
That just brakes a mama's heart. :(
I do have faith that the Good Lord is in charge and someday we'll learn the answers why.

Until then Grace :queen:will smile her smile to melt all the docs and nurses hearts and........
get us moved up in line faster :yfrown:(shameful I know).:ylol:

Out of curiosity, does your boy have any other problems like joint pains, skin problems or...anything?
 
The news we all dread hearing especially when all appears fine. I hope it just takes a tweak in medication to get him right back on the road and inflammation markers down.
We're praying for you here.
 
Thanks friends. Drew has bad seasonal allergies but no skin or other issues. My son Jaden had a bad case of psoriasis but we found a simple medicine to take it away. Those two disease are cousins I hear. I would take the psoriasis over crohns intersting how these autoimmune diseases work. Praying this is all we get I can't take any more bad news. I feel so sorry for him. I'm a strong Christian but my faith has defiantly been tested. Thanks for your words.
 
Ah! Then let's hope that the inflammation markers are from something else like the allergies and scopes show he is clear as a whistle! Did you do a fecal cal test?
 
Yeah! That's it! Hurt a muscle at baseball! Isn't the view lovely in our bubble? Our GI was looking at some increased inflammation markers a bit a go and I was nervous we were heading for scopes and Clash gave me the very excellent advice of asking for a fecal cal test first....not that it will stop all docs looking to scope but maybe.......

Good luck with all star baseball!
 
Hi, I just wAnted to say like the others maybe his meds need a tweaking. My daughter had a resection and sadly 6 weeks later was having issues again. They then out her on methotrexate. We had almost two good years in that. Now she is on LDN and is doing great but it took a long while to get there. Hang in there Mom, we know it is tough. Definitely ask about the fecal calprotectin test before doing a scope.
 
Sorry to hear you are struggling. This disease is horrible - you can be getting along fine and then things just go wrong. Hope you manage to sort the meds to get his inflammation under control!
 
It could be the extra workouts. Alex made his all-star team (somehow) and hoo boy, he's never worked out so hard before! I worry about where the edge is on him pushing himself too hard physically, but in general it's been good for him. He had a bad day yesterday with the heat and a headache though. I hope the bloodwork was just one-off, maybe postpone the scopes til after the next round of bloodwork? We've had occasional blips, including one just a few months ago of inflammation marker up and got back to normal next month. Good luck!
 
UPDATE:
Today we had our scopes. Unfortunately his Dr. found some ulcers in his esophagus and a few other spots. No swelling, or bleeding but enough that she thinks the disease is spreading. His colon and most of his small intestine looked great, no swelling. She is starting him on Remicade next tuesday. I'm praying that this is our miracle drug and all goes well. We start in three increments and then go every 8 weeks. Any info would be great. I wish everything was perfect but I feel like at least now we are going to a medicine that hopefully will do it's job. Praying for good results!!
 
Sorry it was not exactly what you guys hoped for. Hopefully remicade will be your magic bulletin. It has worked well for a lot of kids here.
 
Sorry the ulcers are back. I hope the remicade works wonders. It's a long infusion the first time (4 hrs I think) and 2 hrs after that, so take something to do/read/play. Fingers crossed for you!
 

Similar threads

K
Predictr promethius test
Replies
7
Views
297
pdx
pdx
S
Two year old with symptoms
Replies
22
Views
3K
J100
J
P
How long on EEN before your child had solid motions again
Replies
5
Views
761
padrach3
P
C
Jaw swelling,
Replies
9
Views
1K
asadmom
A
C
Your thoughts, please. 10 yr old.
Replies
14
Views
1K
Crohns dad
C

Latest posts

Back
Top