Hi everyone
I'm feeling so incredibly down at the moment and just felt I needed to reach out to this wonderful community to help me see if there's a light at the end of the tunnel.
5 weeks ago I had a right hemicolectomy for a fibrotic obstruction in my terminal ileum. Whilst the surgery itself went well, I had terrible fevers for days afterwards. Turns out I had an infection in one of the wound sites. Ok- I dealt with that after being loaded with antibiotics. I finally get out of hospital 8 days post op, and a week later I started to get bad upper epigastric pain. I see my surgeon about it, he puts me back in hospital and yet the X-rays show nothing. I'm released the next day and for a week I get the pain intermittently.
It gets to a point though where I suffered pain for 24 hours straight and I am at my wits end. So off to emergency I go and I'm admitted back into hospital for another few days. I got X-rays, ultrasounds, bloods, urines done but nothing is showing up. My surgeon then suggests I have an endoscopy done with my gastroenterologist. Initially, she refuses- says she sees no need to do one. 2 days later, I'm in so much pain my partner rings my Gastro and begs for her to do the scope. She is reluctant and is very gruff with my partner- finally she said "bring her in tomorrow".
So there I am, back in hospital waiting to be scoped. I'm exhausted from not eating for 5 weeks, I'm emotional as I was sick and tired of feeling so ill and my Gastro comes in, gives me a very condescending look and says "I don't want to do this but I will and I expect to find nothing". At this point, I just cry. She tries to tell me that I'm clearly anxious and depressed and that's what's causing the pain- she will prescribe me anti-depressants and that will be that. I feel totally ashamed and started questioning mental state. Am I just making this all up in my head? She made me feel so small and stupid.
So after the scope she says "see, I told you I wouldn't find anything. Here are some names of some counsellors". I went away from that feeling the lowest I had ever felt. That was last week and yet the pain continued.
This week, on Tuesday, the pain is so bad I ring my GP and just say to her I am in so much pain and the meds I'm on aren't doing anything for it. My Gastro thinks its all in my head but this pain is real. My GP says to me "I'm glad you called, you're not going crazy. I just got the biopsy results back from your scope and you have chronic gastritis and acute duedonitis. You need to start steroids ASAP."
Of course, I burst into tears upon hearing this: tears of relief that it wasn't in my head bit tears of anger at my Gastro for making me feel so stupid.
And so now I'm back on prednisone again (I have only had 4 prednisone feee weeks this year) and I feel like I'm now in a full blown flare as the big D started yesterday.
I feel so fed up. I hear about people's success after surgery and get so disappointed that my recovery has been so difficult. I feel like the best years of my life are behind me and my future will be fraught with constant battles. And I fear that I'm well and truly prednisone dependant now and it reduces me to tears.
I truly am sorry to be such a downer. I guess 5 weeks of constant pain, not eating and limited activity has driven me crazy. I'm worried, I'm disappointed, I'm fed up- I'm every emotion you can think of. I would dearly love any support anyone is willing to give. Can someone tell me this will all get better?! Is there light at the end of the tunnel??
I'm feeling so incredibly down at the moment and just felt I needed to reach out to this wonderful community to help me see if there's a light at the end of the tunnel.
5 weeks ago I had a right hemicolectomy for a fibrotic obstruction in my terminal ileum. Whilst the surgery itself went well, I had terrible fevers for days afterwards. Turns out I had an infection in one of the wound sites. Ok- I dealt with that after being loaded with antibiotics. I finally get out of hospital 8 days post op, and a week later I started to get bad upper epigastric pain. I see my surgeon about it, he puts me back in hospital and yet the X-rays show nothing. I'm released the next day and for a week I get the pain intermittently.
It gets to a point though where I suffered pain for 24 hours straight and I am at my wits end. So off to emergency I go and I'm admitted back into hospital for another few days. I got X-rays, ultrasounds, bloods, urines done but nothing is showing up. My surgeon then suggests I have an endoscopy done with my gastroenterologist. Initially, she refuses- says she sees no need to do one. 2 days later, I'm in so much pain my partner rings my Gastro and begs for her to do the scope. She is reluctant and is very gruff with my partner- finally she said "bring her in tomorrow".
So there I am, back in hospital waiting to be scoped. I'm exhausted from not eating for 5 weeks, I'm emotional as I was sick and tired of feeling so ill and my Gastro comes in, gives me a very condescending look and says "I don't want to do this but I will and I expect to find nothing". At this point, I just cry. She tries to tell me that I'm clearly anxious and depressed and that's what's causing the pain- she will prescribe me anti-depressants and that will be that. I feel totally ashamed and started questioning mental state. Am I just making this all up in my head? She made me feel so small and stupid.
So after the scope she says "see, I told you I wouldn't find anything. Here are some names of some counsellors". I went away from that feeling the lowest I had ever felt. That was last week and yet the pain continued.
This week, on Tuesday, the pain is so bad I ring my GP and just say to her I am in so much pain and the meds I'm on aren't doing anything for it. My Gastro thinks its all in my head but this pain is real. My GP says to me "I'm glad you called, you're not going crazy. I just got the biopsy results back from your scope and you have chronic gastritis and acute duedonitis. You need to start steroids ASAP."
Of course, I burst into tears upon hearing this: tears of relief that it wasn't in my head bit tears of anger at my Gastro for making me feel so stupid.
And so now I'm back on prednisone again (I have only had 4 prednisone feee weeks this year) and I feel like I'm now in a full blown flare as the big D started yesterday.
I feel so fed up. I hear about people's success after surgery and get so disappointed that my recovery has been so difficult. I feel like the best years of my life are behind me and my future will be fraught with constant battles. And I fear that I'm well and truly prednisone dependant now and it reduces me to tears.
I truly am sorry to be such a downer. I guess 5 weeks of constant pain, not eating and limited activity has driven me crazy. I'm worried, I'm disappointed, I'm fed up- I'm every emotion you can think of. I would dearly love any support anyone is willing to give. Can someone tell me this will all get better?! Is there light at the end of the tunnel??
) talking to a live person might really benefit you and help you find peace for what you are going through
