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My Story- Diagnosis to Surgery in less than a month

Hi I am twenty two and let's just say my world has been completely turned upside down this year, well mainly this month.

For a few years now I have had severe abdominal pain off and on but never got any help when I went to the doctors so I played it off and ignored it....stupidly.

For perspective I will fill in some back story. A year ago I decided to travel to Europe and caught wanderlust, I came back to my full time job and was unsatisfied. I decided I was going to work my butt off, save, give up my place and quit my job to move to Australia. And I did just that and planned to be away for a year if not more... just wanted to go with it. However, some things changed and I decided to go to asia to de-stress for a bit. BOOM...the worst back/abdominal pain and constipation ever. I couldn't handle it and booked to come back to Canada only to keep being stubborn and not go into the doctor for another week. (Didn't feel like being told nothing was wrong again.)
It took only a barium swallow test and blood results to say I was having a severe flare up of Crohn's, I was put on prednisone, imuran and antibiotics right away and booked in for a colonoscopy. They found a abscess but didn't send me into a ct scan right away to save me from radiation. At this point they said they would be able to avoid surgery and I was so relieved. However, I finished the antibiotics and my pain got way worse. Into the ER I went and they found I had a tear and a leak in my ileocecal valve. After 6 days of being admitting (and told no surgery needed) and treated with antibiotics and iron transfusions they told me I wasn't responding to any medication and onto surgery it was even though the inflammation was out of control. A week ago they did a open resection of just under a meter of my small intestine/ small portion of large and removed my appendix as well as a fistula. I do feel better but, I am having trouble dealing with incision pain and loss of control over everything it seems. To go from hiking mountains and traveling to being knocked on your butt, cut through the stomach and forcing meds down on your parents couch in a month is a little bit of a overwhelming reality check. I know it will pass and hopefully remission will come soon enough but I just wondering how other people deal with recovery and diagnosis? Fear of complications, not responding to treatment, needing more surgery, the future??

I hope I didn't overshare or anything... looking forward to being part of this community.

Thank you for reading.
 

DJW

Forum Monitor
Hi and welcome.

I'm sorry you've been so sick. Try and take it easy for a while. Walk as much as you can. It can take 10-12 weeks before you start feeling good again. Until then take it a day at a time. I also suggest keeping a foodand symptom journal to identify food triggers.

Sending you my support. Hope you feel better soon.
 
Hey there,

I'm fairy new to the forum as well, and I really appreciate your story. I can strongly relate, however, I have not had surgery. Quite frankly, after enduring years of terrible symptoms with no real answers or results, I wouldn't mind having the disease taken right out.

I wish you all the best and a speedy recovery.
 
Hey,

Thank you for the welcome! Iica I totally understand what you mean, I am thankful that the diseased bits are taken out right now. What do you do to cope with your symptoms? How long have you been diagnosed?
 
I was only diagnosed last may, however, I've experienced mild to severe symptoms since high school. My family doctor had me tested, through exploratory surgeries, ultrasounds, blood tests, etc. for years, looking for endometriosis, kidney or liver issues, appendicitis, sists, etc. There was never a clear answer, and my doctor never guessed I had IBD. I dropped out of school in Grade 11 because I wasn't well enough to make it to school. I finished my schooling at home. The symptoms continued on through college, but it was easier to manage, as I could essentially teach myself all my courses from home. It wasn't until after college and well into my first big girl job that it really floored me. I was the worst I has ever been; complete loss of bodily functions, regurgitating every meal, violent vomiting, excruciating pains (felt like someone was stabbing me). Inevitably, I lost my job. That is when I had enough, put my foot down, and demanded my doctor figure it out. Since I was diagnosed, it's been a constant battle as I've been in and out of remission. I've been on nearly every medication, feeling all effects at their fullest (almost just as terrible as crohn's), and still no positive results. It's definitely been very frustrating. I was in remission for 3 months, got a new and amazing job, and BOOM! lol it's smacked me in the face again. 20 cm of my small intestine is swollen and I feel every bit of it, all day long. Of course, it doesn't help that I've refused to take the Imuran my doctor has prescribed me, as I don't trust him. He never spends any longer than 10 minutes with me, barely discusses anything with me, and I feel like he's just pushing drugs. I'm currently waiting to hear back from another GI that my family doctor has referred me to for a second opinion.
 

valleysangel92

Moderator
Staff member
Hello there

It's not surprising that this has been a shock to your system. I'm 21, I was diagnosed at 19 and had surgery a few months later at 20 and I'm now back in a flare ( but I wasn't given maintenance medication after my surgery) .

All the questions you have are natural. There isn't a clear cut answer as crohns is different for everyone but I can say that this isn't the end of your life. There are many people who live normal lives with crohns disease. Although I cannot tell you how quickly you will get into remission I can tell you it is possible. Although I can not say how long it will last I can say that you can make the most of it while you have it.

What treatments have you been placed on after surgery?

Remember that this is very early days. Open surgery is a massive shock to your system and it will take time for you to start feeling like you are getting back to yourself, but this is normal, just be patient with yourself.

It can sometimes take time and a bit of trial and error to find the medications that work for you, but once you find the right combination you should find that things improve greatly.

Although I am currently flaring again, I would say surgery was definitely the right thing for me at the time. Although having one surgery does increase the chance you will have another, especially having it younger, it is not a garuntee. Although concerns about further surgery are natural, they may become less significant as you start to feel better.

The important thing to remember that invasive, major surgery such as yours is usually the last resort. Now that you have a diagnosis you will have quicker access to proper treatment should things flare up again, you will have regular monitoring of your condition and you will learn to read your own body so that you can start to see patterns in your symptoms and potentially identify flare ups sooner. This will all help to reduce the chances of needing such radical surgery, especially in the shorter term. Treatments are getting all the time and there are almost constant studies and breakthroughs in the search for better medications.

Don't worry about over sharing, we're here to listen and to help, we don't judge here. If you have any more questions don't hesitate to ask.
 
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