The nature of Crohns to anyone not familiar, is that sufferers can live periods of 'remission' from the actual illness, often with the assistance of drugs, and not requiring surgery. Obviously the reverse is that the only means to get out of a 'flare up' can often only be a surgical one, which i will blog about at another time.
Although the number of medications and their positive effects have improved over the years, the basic equation of flare-up from a period of remission vs medication or surgery remain the case. Like many long term sufferers i have entered into this arrangement many times, hoping the medical benefits will get me into remission and there might be no need to call on the surgeons again!
If it was a simple judgement call of medication = good surgical =bad, then sufferers lives would at least be made a touch simpler. Sadly, as with much about Crohns and IBD, it is never that clear cut.
At first, from a personal perspective, i was seduced into the belief that steroids would be a godsend , no need to endure surgery, either IV or oral drugs. Back in the day, medics were experts in keeping patients content and on-board with this notion. Of course additional medication can and is introduced, but I was always encouraged to think, less surgery the better. Steroid treatment being the goto drug at the time being the preferred choice by medics.
Don't be mistaken that i am going to go all negative and anti this course, i must admit that they have halted the threat of steroids, put me in remission, and 'saved my life'. The problem for most long term patients is the side effects and disadvantages steroids and other drugs give us sufferers.
I don't want to scare the hell out of new patients nor make them fear certain treatments, everyone is an individual, responds to drugs very differently and can live in remission happily with minimal medication or effects.
The alternative is that sufferers can entire a spiral of needing surgery, going into a period of remission, another flare up and first course can be steroids or/and other drugs. There are many negative effects of the steroids, in fact that applies to all drugs. I've never come across one medication that has no side effects, thats not how life is!
My opinion is that each and every sufferer needs to arm themself with information, pro and con, be prepared for consultations by writing down questions and input. To do nothing and taking everything on face value is not an option.
We have to accept that it is not feasible to surgically remove diseased bowel every time it 'misbehaves', that is fact, however much we dislike medication and side effects. We can play as active a role as is possible in taking control of treatment and getting the facts of the benefits and disadvantages of drugs.
I can personally vouch for the fact that drugs can and do cause additional problems. I don't want to deal with them now. I can say how effective some medications can be as well as the reverse. It is a juggling process over time to keep Crohns 'sweet' and in remission. It is also a process you must try to fully participate in as well and voice opposition when needed, and offer alternative avenues.
When all is said and done, it is you with the illness, you who benefits from drugs or surgery. You are also the one who suffers from the negative effects of treatments the side effects, and any damage done.
Anyone despite the fact they are feeling in pain and suffering, despite their mental state or feeling of despair, must try grasp control of the care they are offered. This isn't easy, it can be a batte of wills or a fight you don't want to take on because you just want to crawl up in a ball and hope it goes away!
Its so easy to want to give in and simply accept what you are told, take the drugs and hope the surgeons don't come calling!! I've been there so i'm not suggesting i am this resilient person who always thinks clearly and gets what i want! No way, It has taken some years for me to get to being more than an equal partner in my care with the consultant.
To conclude, Crohns , as we all know is cruel, indiscriminate and attacks your body and spirit. Despite this, we must take control of our care with the expert advice of consultant, etc. We must try to gain knowledge of pros and cons of drugs from other sufferers, as well as other references.
The bottom line, however, is that each and everyone of us is different, individual and react to all treatments or surgeries differently. That must be the first piece of information we start with.
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