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My story so far...

Hi everyone. My name is Tammy, I'm 25, and I live in the countryside in the UK. I'd like to say how long I've had Crohn's disease for, but the truth is I don't actually know.
I remember having really bad symptoms when I was in secondary school, probably from the age of about 14 or so, maybe even earlier. The pain and fatigue have just seemed like a part of who I am for so long, I can't really remember a time before. When I was 18 I had my appendix removed, and my symptoms went away for a long time.
About 3 years ago, when I was about 22, I started getting ill all the time. I figured I was just really unlucky and kept eating food that had gone bad or wasn't cooked properly, I had no idea that I might actually have a condition. Even when my appendix was removed, I wasn't diagnosed with anything.
It soon became the case that I was too ill to do anything. I spent 10 days out of every two weeks (roughly) in bed, getting up only for frequent bathroom visits or to be sick. I lived on soup for more than 50% of the time. I lost my job, the government told me I wasn't ill enough to claim any financial help, and my doctor kept insisting I only had IBS. My husband joked that maybe it was Crohn's, but neither of us really believed it.

Then, one day, a different doctor at my gp surgery spoke to me. He told me that he wanted some tests run, including a colonoscopy and an MRI scan, because he believed there was a very good chance that I had Crohn's disease. I was surprised, I didn't think it could really be the case...we never believe something like in incurable disease will actually happen to us, do we?
Eventually, about a year ago, I was finally diagnosed with what my consultant calls severe Crohn's disease. I was given budesonide, which didn't work. I was then given prednisolone, which worked, but I got shaky hands all the time, insomnia, acne, profuse sweating, and I gained about 50lbs, which I'm still trying to get rid of. Since being taken off the prednisolone, I'm on azathioprine - I was told just a short while ago that my dosage was so high it was poisoning me and had to be reduced immediately. I've also been on a low residue diet since then, and have had many battles with friends and family members (mostly my mother-in-law) who cannot understand the restrictions of my diet, despite the information sheets I've provided. Also, about 5 months ago now, my hair started falling out in clumps - imagine my joy at being a 25 year old woman with a combover. I'm told this was due to my body's delayed stress at such a severe flare-up, and my hair has since grown back, but I dread the thought of it happening again.
At my most recent appointment I told my consultant that I still have issues with pain and ridiculously frequent bathroom visits, but more than anything else, a complete lack of energy ever. He told me that my Crohn's is probably still active, so now I have to have another MRI and then anti TNF meds (either infliximab or adalimumab, one of which is known a humira), but we don't know which one yet. We are trying to avoid surgery, both because the consultant believes it should be a last resort, and because I have a debilitating (and completely irrational) phobia of being put under anaesthetic.
Through all of this, I'm doing a full time honours degree in astronomy and planetary science, and I work at a supermarket at the weekends. I'm comstantly getting hassled to do more overtime, which I have neither the time nor energy for. My mum is a great support, mainly because she both understands the issues of permanent health conditions, and because she acknowledges that she cannot understand what I'm going through.
My husband means well, but he is not very helpful at all. He had a girlfriend once who also had Crohn's disease, and so he believes that he understands my illness because he understood hers (a statement which is both doubtful and irrelevant).
At this point, I've been in a flare for about 4 years and I just want it to be over. I'm exhausted. And more than that, I wanted to talk to somebody who would understand all of this, and sympathise, and not try to tell me that I need more vitamins, or that it's all in my head, or that I "don't look ill". I can't remember the last time I felt I'd had enough sleep, or the last time I went out with friends (I think it was about 4 months ago, but I'm not entirely sure). Please, somebody talk to me. I feel so alone, and that's why I'm reaching out to you all.

Yours exhaustedly,
Tammy.
 
I just signed up today. How do you post? I got crohn's disease from food poisoning (Puritan Corporation in Markham, Canada) way back in April 1997 and nearly died twice because of it. Finally got surgery after lapsing into a coma. Double resection back in May of 2013. Right Hemicolectomy. World renown Tom Anderson was the surgeon. He told me it was a miracle I survived until my surgery date.
 
Welcome, Nicky. I am glad that you survived. I am sorry that you have this disease. Both of you feel free to share.
 
Hi everyone. My name is Tammy, I'm 25, and I live in the countryside in the UK. I'd like to say how long I've had Crohn's disease for, but the truth is I don't actually know.
I remember having really bad symptoms when I was in secondary school, probably from the age of about 14 or so, maybe even earlier. The pain and fatigue have just seemed like a part of who I am for so long, I can't really remember a time before. When I was 18 I had my appendix removed, and my symptoms went away for a long time.
About 3 years ago, when I was about 22, I started getting ill all the time. I figured I was just really unlucky and kept eating food that had gone bad or wasn't cooked properly, I had no idea that I might actually have a condition. Even when my appendix was removed, I wasn't diagnosed with anything.
It soon became the case that I was too ill to do anything. I spent 10 days out of every two weeks (roughly) in bed, getting up only for frequent bathroom visits or to be sick. I lived on soup for more than 50% of the time. I lost my job, the government told me I wasn't ill enough to claim any financial help, and my doctor kept insisting I only had IBS. My husband joked that maybe it was Crohn's, but neither of us really believed it.

Then, one day, a different doctor at my gp surgery spoke to me. He told me that he wanted some tests run, including a colonoscopy and an MRI scan, because he believed there was a very good chance that I had Crohn's disease. I was surprised, I didn't think it could really be the case...we never believe something like in incurable disease will actually happen to us, do we?
Eventually, about a year ago, I was finally diagnosed with what my consultant calls severe Crohn's disease. I was given budesonide, which didn't work. I was then given prednisolone, which worked, but I got shaky hands all the time, insomnia, acne, profuse sweating, and I gained about 50lbs, which I'm still trying to get rid of. Since being taken off the prednisolone, I'm on azathioprine - I was told just a short while ago that my dosage was so high it was poisoning me and had to be reduced immediately. I've also been on a low residue diet since then, and have had many battles with friends and family members (mostly my mother-in-law) who cannot understand the restrictions of my diet, despite the information sheets I've provided. Also, about 5 months ago now, my hair started falling out in clumps - imagine my joy at being a 25 year old woman with a combover. I'm told this was due to my body's delayed stress at such a severe flare-up, and my hair has since grown back, but I dread the thought of it happening again.
At my most recent appointment I told my consultant that I still have issues with pain and ridiculously frequent bathroom visits, but more than anything else, a complete lack of energy ever. He told me that my Crohn's is probably still active, so now I have to have another MRI and then anti TNF meds (either infliximab or adalimumab, one of which is known a humira), but we don't know which one yet. We are trying to avoid surgery, both because the consultant believes it should be a last resort, and because I have a debilitating (and completely irrational) phobia of being put under anaesthetic.
Through all of this, I'm doing a full time honours degree in astronomy and planetary science, and I work at a supermarket at the weekends. I'm comstantly getting hassled to do more overtime, which I have neither the time nor energy for. My mum is a great support, mainly because she both understands the issues of permanent health conditions, and because she acknowledges that she cannot understand what I'm going through.
My husband means well, but he is not very helpful at all. He had a girlfriend once who also had Crohn's disease, and so he believes that he understands my illness because he understood hers (a statement which is both doubtful and irrelevant).
At this point, I've been in a flare for about 4 years and I just want it to be over. I'm exhausted. And more than that, I wanted to talk to somebody who would understand all of this, and sympathise, and not try to tell me that I need more vitamins, or that it's all in my head, or that I "don't look ill". I can't remember the last time I felt I'd had enough sleep, or the last time I went out with friends (I think it was about 4 months ago, but I'm not entirely sure). Please, somebody talk to me. I feel so alone, and that's why I'm reaching out to you all.

Yours exhaustedly,
Tammy.
Tammy,, hopefully one of the two sntii-TNF meds will prevent surgery for you.
 
I hope you get better Tammy, I'm sorry people don't understand, I just had an appointment today, knew it would be a waste of time, he's just one of dozens who don't listen or order proper testing.

Your rant is heard, and I completely sympathize, your not alone in your suffering. I have no life outside of work either, won't/cant eat out, avoid family functions, and spend quite a bit of time either sleeping, or trying to build my wasting body up, trying different foods, spending tons on supplements, lots of ER visits, hoping to get someone's attention, alienation by the health care industry, it's a tough road, be strong.

The reason they want to avoid surgery is because it doesn't really help some patients and your better off keeping your body parts, especially your digestive system as it is not only 80% of your immune system, it is also how you absorb nutrients, minerals and get your energy from.
 
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