Conor_Stewart
Conor_Stewart t1_j5dnlii wrote
Reply to comment by oskrawr in Currently in Hospital with Severe Crohn's Disease - AMA ! by CrohnsBoyTheThird
Unfortunately there are a lot of conditions that can affect your bowel, if you aren’t diagnosed with IBD then it could be a lot of other things. If an antihistamine helps you then could it be possible your condition is an intolerance or minor allergy? Those are things that get a lot of benefit from antihistamines. Have you been checked for celiac?
Conor_Stewart t1_j5dn9xs wrote
Reply to comment by Bumchewer in Currently in Hospital with Severe Crohn's Disease - AMA ! by CrohnsBoyTheThird
The NHS supported you doing this? It seems very far outside of their normal treatment plan for IBD.
Conor_Stewart t1_j5dmu17 wrote
Reply to comment by CrohnsBoyTheThird in Currently in Hospital with Severe Crohn's Disease - AMA ! by CrohnsBoyTheThird
Unfortunately since they don’t really know what causes Crohns, they also don’t know 100% how to treat it, so different treatments work for different people, there are a few that tend to be more effective for more people but you never know until you try them. Adalimumab (what is in Humira) worked for me but gave me some of the most unusual and severe side effects it can, like potentially a white matter lesion in my brain. The biologics are still relatively new and they don’t know the very long term effects of them and there are many different types within biologics, I am now getting put on vedolizomab (Entyvio), which works in a totally different way to adalimumab which is an anti TNF drug, the drugs work in different way and different areas of the body, adalimumab affects the whole body whereas vedolizomab only really affects the bowel. Since they don’t know what causes it, it takes time to find what type of medication works well for it.
So it is all very well people saying or recommending what drug worked for them or someone they know, but the disease is so varied that what worked for them might not work for you, any decent GI doctor knows of all these drugs, and should keep up with what new ones come out, and they probably have a much better idea of what is likely to work. It just takes trial and error and that does take a while.
Conor_Stewart t1_j5dli1d wrote
Reply to comment by CrohnsBoyTheThird in Currently in Hospital with Severe Crohn's Disease - AMA ! by CrohnsBoyTheThird
Another slightly different perspective. I don’t stay positive or happy either but I tend to just become numb to it all, to the point where not much will affect me, just waiting for the next thing to go wrong. It probably isn’t too healthy a way to deal with it but after so much going wrong and cancelled plans and having to take time out of Uni, etc, it does seem like the easiest method. My IBD team have just decided to put me on a liquid diet though, so I will start that on Monday, it’s not something I want but it is just something I will have to get on with.
Conor_Stewart t1_j5ij9sx wrote
Reply to comment by Bumchewer in Currently in Hospital with Severe Crohn's Disease - AMA ! by CrohnsBoyTheThird
How long ago was this?
Also did you have any lasting effects from being on a liquid diet for that length of time with your bowel pretty much not working for the entire time you were in the liquid diet?