Newly diagnosed with a few worries

[Seanriv]

I just recently had my first colonoscopy/upper endoscopy and they found inflammation in my large and small intestine. The biopsy and blood test results came back and they diagnosed me just yesterday. I've suspected I had this for a long time now, so I'm not surprised, but now that the reality has sunk in I'm kind of scared for what I may be in for.

They prescribed me Asacol and I've been procrastinating picking it up because I'm scared of the side effects. From my reading it also seems that Asacol isn't too useful for small intestine inflammation, which I apparently have, so I'm not entirely convinced it's going to help me. I dunno, compared to a lot of people I've read have this my symptoms are fairly mild, but it seems like a lot of people don't even hit remission regardless of severity. I guess what I'm really getting at here is that I don't really know my odds of success and I don't really know my odds of ending up worse off. Like how many people have their kidneys dissolved by Asacol? How many people build up resistances to medications that work? How many people cycle through all of the meds without finding one that works for them? How long would remission last for me? Am I going to be able to continue my life without constant fear that this disease might cut into whatever I'm doing and tear it apart?

I don't know. These thoughts make me want to just sit around on a computer forever until I die, but I know that that just isn't reality. I'm sorry if there's a section for posts like this and I missed it, and I know no one can really answer a lot of these questions for me, but any words of encouragement would be greatly appreciated. :')

 

[ronroush7]

Welcome to our group. I am sorry you have this disease. We also have a section called Treatment. You might GI over there and ask any specific questions about Asacol. My concern would be if you don't treat it, are you causing worse damage to your body. As far as building up resistance to medications, I know with some of the big guns like biologics they can only last a certain amount of years. But not all people are the same. They might last years and years for you. Are you on any other meds? remission can last different periods for different people. Also, you might want to talk with your doctor about any concerns you have about Asacol. I wish you the best. Please keep us updated as you have a chance.

 

[Seanriv]

I know, but my extra intestinal symptoms are worse than any cramping or pressure in my abdomen. So in terms of symptoms I'm worried I might end up with a net loss. In the long run, though, I know I have to start taking this stuff. Just fighting off a bit of resistance, is all.

The only other med I'm on is amitriptylin, which stopped my headaches and rashes from getting worse. Then I guess there's Nexium for the GERD I've been experiencing, which has stopped the horrible chest pain I had almost entirely.

Yeah, I don't go back to see the specialist until the 14th, and I'm actually not too sure when the follow up for my doctor is.

 

[ronroush7]

Sending support.

 

[Lady Organic]

Hi Sean. Inflammatory bowel disease is serious disease and needs to be treated when active to avoid complications and worsening of disease. My best advice is to fallow the instructions of your doctor. The more you wait, the more you risk damaging your intestine. Your doctor wants to try Asacol first and see if you are responsive. If you are lucky, it will! The dr possibly wants to see you in a short time to evaluate your condition and if symptoms persists, he/she will offer other treatments. Asacol is the IBD treatment with the less potential side effects. Make sure you have close fallow up with your GI and that the wait is not months from now. When is your next appointment scheduled? Jan 14th? good luck!

 

[embyrr]

Hello Sean,
Let me tell you how I reacted when I was diagnosed at age 13. I was also prescribed Asacol and had to take 5 pills two times a day. It was okay as long as my parents helped me but as I aged I realized that I would have to keep track of this myself. When I did come off it, during summer holidays or something, I would end up in the hospital. There was no other alternative. I realized this medication was keeping me from ending back there.

Let's talk about the side-effects: it will make you more fatigued, at least for me but that can also be the disease. Sometimes I have diarrhea, but again that comes with the disease. Sometimes I have nausea but can be blamed on Crohn's as well.
Essentially these side-effects are outweighed by how Asacol reduces the inflammation and is a relatively moderate medicine to take.

Don't give up on doing things either. Trust me, I've had it 13 years now and it won't go away, these days I'm crawling to my desk at work and I hate feeling nauseous, weak, unconcentrated. And then I come home and my partner takes care of me. There is a silver lining to it all, and we can live nearly normal lives. Take care of yourself and take your medication. All the best.

 

[kiny]

I dunno, compared to a lot of people I've read have this my symptoms are fairly mild

That's good right.

but it seems like a lot of people don't even hit remission regardless of severity.

A lot of those people chose not to take their medication.

How many people build up resistances to medications that work?

You're thinking of biologics and antibiotics. You can develop antibodies to Anti-TNF and you can develop bacterial resistance to antibiotics.

Asacol is the mildest medication available for crohn's disease, you can take it long-term without resistance.

These thoughts make me want to just sit around on a computer forever until I die, but I know that that just isn't reality.

Nothing in life is without risks. Many people with crohn's disease live fulfilling lives. If you get depressed you can always talk to a psychologist, I used to talk to one too, getting crohn's disease at young age weighed on me.

The best advice I can give you is to listen to your doctor, take your Asacol so your mild disease doesn't become a severe disease. Don't worry too much, and try to enjoy things you like to do in life, nothing is stopping you.

 

[fuzzy butterfly]

Hi and welcome. I agree with all the above. You have this disease but don't let it own you. Do your best to beat it into submission, and try anything that may help you do just that. Sending support n best wishes. Hang in there it's a marathon not a sprint I'm afraid.