The beginning of a scary journey

[victoria plum]

Hello fellow chronies, i am totally new to this forum ,to this disease and i hate it already. i am 3 months into my diagnosis, after being sick for 6 months prior i finally got an answer through a colonoscopy which revealed Crohn's. I feel like a stranger in my own body, i look sick, i feel like shit right now, im out of work due to anaemia, and more weightloss and this is the part I hate the most , it makes me cry. I am trying to stay strong for my children, my partner and trying not to go down the road of self pity but its hard some days and im really grateful i've signed up to this forum so i don't feel alone in this journey ive somehow been give for my lifetime. At the moment I am on a white foods only diet due to a stricture that i have on right side of my intestines, something i think about EVERY DAY. can i avoid surgery? will i eat something that will obstruct me? can you live with a stricture and not have to have it removed? I am currently on Cortiment and pentasa for now but im not doing so great on them, I was but im not now and im trying to remain upbeat and not let this disease get me down every day of my life so i hope to god it wont and I can live a relatively normal life and be there for my family. thank guys

 

[xmdmom]

Hello. I'm sorry you are dealing with this. If you have current anemia and weight loss, it would seem to indication that your current medication isn't working well or well enough. Perhaps another medication could help you more.

My son was in college when he got Crohn's. He was on budesonide (Cortiment) for a year or two and it helped but he still couldn't get up to a normal weight and was tired all the time. He is currently on Remicade (only) and he gained weight and has good energy. We do worry about serious side effects but (knock on wood) he hasn't had any.
We don't know how long it will work but he feels almost normal and can eat almost everything. He takes vitamins D, B12, multivit too. He has a stricture that has improved on imaging so the doctors think it was mainly or all inflammation.

I am writing to you to say that some people with Crohn's feel normal on medications. A stricture could be serious or not so serious. It could be fibrous tissue and the narrowing could be such that obstruction is likely or it could be mainly or all inflammation that will go away with the right medicine. Please let your doctor know that you are not doing well. Best wishes for a healthy future.

 

[victoria plum]

Thank you so much for your reply and words of comfort. I currently see two doctors 1 privately that i have to pay for and one that i don,t so between them they both know ,i am not doing so well . I am due back see my consultant next week, he diagnosed me and prescribes my medication so i am hoping he will shed some light on it all and tell me where i go next,it is recommended that i see a nutritionalist now as well because i am not absorbing nutrients at the moment which i know is hard for people with crohn,s to do, i guess i want to be the person i was before and i am scared every day what the future will bring and if i will be strong enough to keep it all together and try to continue to be a good mother and partner through it all. I know there are alot far worse people suffering in the world every day and i try to tell myself to be grateful for that . i wish i could get inside my body pull out my stricture throw it away and start over haha, oh well . I bubble away as i write this, my family are used to my strange noises from my stomach/intestines and i am too although i hate them every day too.anyway we all have to try and stay strong physically and mentally this is the hand we have been dealt in this life time so again i am grateful ye are here.

 

[xmdmom]

Sending loads of hugs to you and healing thoughts.