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Live score: Crohn's 2 - 1 Me - My story is pretty bizarre right now...

It's Back
Well after about 14 months of only minor symptoms my disease came back with vengeance in the summer. During this period some of you may remember I posted about how I was controlling my Crohn's with diet, it worked well until it didn't.

Take action
First thing I tried was getting back on the Tramadol and buscopan which is always my safety net, they do enough to take the edge off. But they are no long term solution. Although tramadol for me is great at slowing my bowels down which in effect reduces any pain, it also takes away my appetite and even my sex drive! So there are pros and cons.

New Symptoms
After a couple more months I realised my Crohn's seems different this time, more aggressive than I've had before. I weighed about 9 stone at this point which was not ideal but not as bad as weighing 8 stone (which I do now). I started becoming very uncomfortable in the build up to a bm, which could go on for half an hour or several hours (depending how long it took me to go!) This is not fun and I'm sure others get this where they are relieved after a bm. Until the next load of food starts moving.

The beginning of a nightmare
I went in for a colonoscopy in August, for the first time I really struggled with the prep the picolax made me feel awful and nauseous all day and my clearout was beyond efficient! Anyway I had the colonoscopy, the doctor said I have crohns of the terminal ileum and they suggested surgery so I agreed, it was time to go under the knife.

Prep from hell
Anyway the prep was so bad this time, that after a few days of getting my food intake back on track I realised I'd lost an entire stone! I was 8 stone after prep. And in the mirror I looked like Christian Bale in 'The Machinist' and I still do really, in my mind anyway...

Not in 6 months, NOW!
So after several letters from the nhs postponing appointment after appointment my family, bless them decided to all chip and pay for me to go private and see a top colorectal surgeon! I was elated, I cried that people care so much when half the time I feel like a complete burden on everyone.

So what's the surgery plan?

Anyway the surgeon impressed me no end, he told me exactly what he was going to do after reading the report from the nhs. Basically snip off the infected area of ileum and colon and sew them back together. Simple yeh?

Prep and Surgery
So let's journey forward, the day before surgery just over 2 weeks ago now. I once again am given Picolax and this time my body completely rejects it, it has figured it out! So I spend the day vomiting it up and having some bms but nowhere near as much as a normal clearout. The morning of the surgery I am knackered and thinking they won't go through with it because I was so sick and the clearout wasn't good. Only for my surgeon saying it's not essential anyway some surgeons don't ask for any prep, it's just better than messing about with poop in the way. The surgery goes ahead.

Post surgery
I wake up and I think 'Woohooo I'm alive, I didn't go to sleep and never wake up' which was my irrational fear for weeks. Then after a short amount of time my surgeon comes to speak to me ''Things didn't go to plan, the nhs report was completely wrong. You don't have crohn's in the ileum or the colon. It's in your small bowel, you have a metre of inflammation in your small intestines! But nothing that can't be treated, no strictures just some minor narrowing. But obviously because it is a metre it is still causing you prolonged discomfort. I couldn't just chop it all out, we need to get you on medication''

Recovery
So after 1 night in the hospital I decide to discharge myself because it's costing a fortune for me to stay in there after a pretty pointless operation. This was not my smartest move as I was in so much pain and could hardly get up off the sofa or bed for a further 4 days! Once all the morphine wore off it started to dawn on me what a disaster this all was.

What now?
I of course plan on making a complaint about my colonoscopy results. They need to explain why they got the location of my Crohn's wrong. Because of that colonoscopy in August I lost a stone in weight, thousands of pounds on private surgery and that is nothing compared to the mental stress placed on me and my loved ones. I have ditched my consultant as a result because all she has done for 3 years is press me to have surgery and I'd say I only see her 1 in 5 appointments, I get sent to see a registrar the rest of the time because she's too busy. An it's a different registrar every time who has no idea who I am or what to do with me without advice from her!

So now the wounds on my body are healing, I'm pretty mobile again which has lifted my spirits but my Crohn's is still very active. I'm back living in hope, back on prednisone for the first time in 3 years, then I see my new highly recommended consultant in a few weeks. Please wish me luck and thank you to anyone who has read this, it felt good letting it all out.

PS. if anyone has any questions about anything or any drugs I take that I have mentioned feel free, I feel like I'm an expert on tramadol particularly.

Oh and by the way I also vape marijuana now and have been for a couple of months. It actually was bloomin marvellous after surgery an helped me get comfortable more than anything else did, including morphine.
 
Location
San Diego
Wow, I'm so sorry about the setback.

I think the colonoscopy in August was not wrong so much as it was insufficient. Colonoscopy cannot see into the small bowel beyond the terminal ileum. So naturally that's all the inflammation that was seen. What the docs should have done, IMO, in addition to the colonoscopy was assess the rest of the small bowel with an MRE or CT scan or even capsule endoscopy. Then the meter of small bowel inflammation would likely have been detected, and they would have known in advance that this could not be addressed by surgery. But I guess that's all water under the bridge at this point.

Good luck with your path forward.
 
Wow, I'm so sorry about the setback.

I think the colonoscopy in August was not wrong so much as it was insufficient. Colonoscopy cannot see into the small bowel beyond the terminal ileum. So naturally that's all the inflammation that was seen. What the docs should have done, IMO, in addition to the colonoscopy was assess the rest of the small bowel with an MRE or CT scan or even capsule endoscopy. Then the meter of small bowel inflammation would likely have been detected, and they would have known in advance that this could not be addressed by surgery. But I guess that's all water under the bridge at this point.

Good luck with your path forward.
Yeah the MRI scan I had was over a year old and did not reflect the current situation. My surgeon checked the MRI scan and there is no visible inflammation on it. Needed an updated one clearly but it was never suggested by my nhs consultant
 
I wonder why the surgeon didn't insist on an up-to-date MRI scan?
I don't know, to be honest I would have probably said no anyway to another procedure the way I was feeling. He felt he had enough information from the colonoscopy and there was no crohns in my small intestines in both previous MRI scans, which were done in 2015 and 2014
 
So you'd still have ended up having the unnecessary surgery, unfortunately, but as Crohns is such an unpredictable disease I still think the surgeon maybe shouldn't have been so complacent and should have warned you that a year is a long time with this disease.
 
So you'd still have ended up having the unnecessary surgery, unfortunately, but as Crohns is such an unpredictable disease I still think the surgeon maybe shouldn't have been so complacent and should have warned you that a year is a long time with this disease.
The thing is though the nhs has been pushing for the exact same operation for 3 years. But I kept refusing saying I wanted to try all other options first. So even if I had waited 6 months the same thing would have happened, I can't blame the surgeon. Another MRI would have helped but it's all hindsight
 
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