Too scared to have treatment

[Cp123]

I have had Crohn's disease for 5 years now and I am 19. I am too scared of the side effects of the immunosuppression tablets, therefore won't take them and I suffer In pain and struggle to do normal everyday stuff. any recommendations????

 

[nogutsnoglory]

I understand the fear but you need to weigh the risks. What's more scary the slim chance of a problem from a medicine or this disease which we already know is a reality causing serious complications? I don't want to scare you but if you need medication you may be picking the best option.

 

[VeganOstomy]

I have had Crohn's disease for 5 years now and I am 19. I am too scared of the side effects of the immunosuppression tablets, therefore won't take them and I suffer In pain and struggle to do normal everyday stuff. any recommendations????

I was in you position and I know how it feels. I held out from taking biologics until I had no choice because I was told by several doctors that I wouldn't live to see 40 if I continued the way I was going. Unfortunately (or perhaps fortunately) biologics didn't work and I ended up having to get my colon and rectum removed, but I'm feeling really good now. Had the meds worked, then I would have been good too.

If you are in constant pain and can't get daily tasks done, then you have to give those drugs some thought. Would you feel more comfortable with something like medicinal cannabis? Have you asked your doctor if they could get you on that? The side effects are quite low and there has been some promising results from others who've tried it.

Good luck!

 

[smiley95]

I was the same way. I was afraid of medication, but it has been the best thing! I have not felt this good in YEARS! Prayerfully consider your options and discuss with your Dr.

 

[JustAYoungLad]

I just want to post to agree with that has been said.

All these medications that treat Crohn's may have a shopping list of "potential" side effects, but they have proven in the own ways to have a degree of effectiveness in reducing or eliminating inflammation from Crohn's Disease. You should get some comfort from knowing that depending on the drug you have you will be continually monitored, symptoms, blood tests, etc.

Also the worse your Crohn's gets the harder and longer it can be to bounce back. Definitely discuss more with your Dr.

Wish you the best!

 

[DustyKat]

{HUGS} to you cp123. :ghug:

There is no doubt that most of the drugs used to treat Crohn’s have the potential to cause very serious side effects but those serious risks are very small indeed.

Untreated or under treated Crohn’s has its own very serious side effects and they are life threatening…obstruction, perforation, sepsis, cancer. The chances of dying from Crohn’s when you are stable or in remission and under the care and monitoring of a GI would be incredibly slim in this day and age and as such many people, not saying anyone here but the wider community in general both Crohn’s and non Crohn's, can fall into a false sense of security and assume that it doesn’t kill but certainly has the potential to do so given the right set of circumstances.

Unfortunately the longer you go untreated and allow inflammation to simmer away damage will continue to be done and as JustAYoungLad has said, it can make it more difficult to bounce back and it may limit your options.

I don’t have Crohn’s but both of my children do. Do I hate they need to take these drugs? Too bloody right I do and I wish with all my heart that they didn’t but I fear the consequences of them not taking them more. My daughter went undiagnosed for 18 months, and so was untreated, and I saw what the disease has the potential to do…we came within 24 hours of losing her. How do I even begin to reconcile that they do need these drugs? Well they did both require surgery and that put them into remission but they do take Imuran as a maintenance medication and they are both healthy and living life to the full.

I also look at this way…

What if they had Type 1 Diabetes, would I not give them insulin? No
What if they had Asthma, would I withhold their puffer or nebuliser? No
What if they had Juvenile Rheumatoid Arthritis, would I withhold these same medications and have them laying in bed in pain and unable to move? No

Crohn’s is no different, it is chronic and it needs attention so you can get on with your life in the best possible way. It is the very least you deserve hun, a shot at a decent life that those of us without Crohn’s very often take for granted. :ghug:

Dusty. xxx

 

[mickey]

Before you make a decision, look at what you are putting IN your body and see if perhaps you are causing additional inflammation by the foods/drinks. For example, some people have sensitivity to gluten, dairy, etc.. while others don't realize sugar negatively affects us as well, dietary drinks have chemicals that may be adverse to you...etc..sometimes some dietary changes can give you some relief. Worth doing that to control some pain/bloating, etc....digestive enzymes and probiotics are easy additions to your day that can help tremendously...feel better! Listen to your doctor, do your own investigations as well...make an informed decision...

 

[Chuck78]

Reading the warnings can be scary on most of our medications. At first the cancer part would scare me, then I though 'hmm they can fix cancer, but not crohn's'. I have strange decision making tactics, the best thing you can do is educate yourself.

 

[bettyboop12]

All medication could cause side effects.. Even taking over the counter medications like paracetamol. It is not to say everyone gets the side effects though.

One good thing is that you are monitored closely whilst on these drugs. I'm on aza and have a monthly blood test.

You are in a position where these drugs could make a difference, some people don't have the choice and need surgery.

Best wishes what ever you decide.