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Crohn's Disease Forum » Support Forum » What now after clear test results?


09-11-2016, 05:26 AM   #1
Starnett
 
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What now after clear test results?

Hi all,

I'm feeling pretty rubbish at the moment. I'm really pleased to report that my colonoscopy and barium follow through both came back clear with no signs of IBD. However, I'm still struggling with daily symptoms which are affecting my life and getting me down. I am trying to get on with things and not let it all rule my life but sometimes I just feel like I want to stay at home and not have anyone bother me.

I'm just wondering what to do for the best now. I got an appointment to see my GI consultant in January. I was shocked at this and couldn't stand the thought of having to wait that long so I contacted his secretary and have got this moved up to 14th October. Much better.

I was hoping for some advice from anyone who has experienced similar results and where they went from there, what they discussed with their consultant? Last time I saw him, he they may look at food intolerances etc if the results were clear of IBD. Based on the tests I've had, could it still be IBD or can I relax and know it's not that now? I'm still having daily issues with my fistula which I've been told I need surgery for. No pain with this right now, just the usual unpleasantness (I won't go into detail). My surgery for this has been but on hold until they've figured out what is going on. I guess I will be discussed with my consultant in October.

I'm just sick of being in pain and living my life worrying about where toilets are

Sorry for the moan, think I just needed to get things off my chest. On the bright side of life, I'm getting married to my partner next July so that's something positive to focus on. We've been together for 14 years so thought it was high time we made it official

Thanks for any advice you can give me. It would help to know what to say to my consultant when I see him.

Andy
09-11-2016, 06:17 AM   #2
ronroush7
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Hi. I would keep pushing until you get answers. You may have to seek a second opinion. Please keep us updated on how you are doing.
09-11-2016, 06:31 AM   #3
ronroush7
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Congratulations on your upcoming marriage.
09-11-2016, 07:47 AM   #4
Starnett
 
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Thanks I will update when I know more.
09-11-2016, 07:48 AM   #5
Charlotte.
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Congrats on your marriage in July first :-)

I agree on the above, second opinion could be one option. My Crohn's was detected in the second MRI which was done in an IBD specialist centre, also including the radiologist (so not that familiar with knees etc. but with the gut, that does seem to make a difference).

If still everything comes back normal:
- low FODMAP diet: scientifically proven to help with IBS (for many it also helps with IBD besides of proper drugs for sure)
- food allergies: blood test is better than prick test
- food intolerances: difficult to determine, still no test available until today
- dietician / nutritionist: super helpful for me with IBD even if I have read a ton of books before, experience about the disease is key, some did specialise in IBD/IBS, that would be a person worth working with I think
- drugs: Xifaxan is a huge help for many, also when it comes to SIBO (was that excluded by tests?)
- lactose/fructose etc.: hydrogen breath tests are very valid
- try to eat less carbs (--> more fermentation, more diarrhoea), instead cooked vegetables, meat, fish, healthy fats, plain yoghurt, probiotics (maybe even VSL3, expensive but the best so far, according to studies, just read a meta analysis about these studies, not available online unfortunately)
- breaks between meals, 5 meals, no late dinners; fruit in the morning, cooked food throughout the day, always combine protein, carbohydrates, fats; no mono meals, no fructose overload (banana for breakfast or a snack or anything like that, always mix please)
- no sugar, no sorbit, no artificial sweeteners (FODMAP)

My dad has IBS and since he made some adjustments to his diet (not all of the above mentioned, he is a bit inconsequent haha), he has made huge progress.

All the above is what I do as well, there should be some helpful literature out there on FODMAP, maybe that's something you would like to look into as well.

Hope that helps a bit. For IBS meditation (gut-directed self-hypnosis, there is something on youtube and a script from a NHS hospital), qi gong, autogenic training etc. is very effective as well, but not solely (nutrition is key).
I'm not a doctor but I have tried a lot, my dad has tried a lot and I keep reading studies for some reason (wished I wouldn't do so because it takes so much time and most times you are not wiser afterwards, only if it is a collection of studies like the meta analysis).

I would recommend if once symptoms have settled down to slowly try to implement some FODMAP richer foods, some sugar etc. to see how far you can go etc. to get back to a more relaxed diet but still a diet that works for you.

Hope that helps a bit, all the best!
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Crohn's Disease: diagnosed 2014 (at 24), symptoms for 10 years now
Enteropathic Arthritis, Sacroliitis, Osteopenia

Stelara; Uceris; Lansoprazole; Domperidone.

Previously: Remicade, Humira, Simponi, Azathioprine, Methotrexate, Sulfasalazine, Entocort, Uceris, Prednisolone, TPN, EEN, different alternative treatments.
09-11-2016, 08:17 AM   #6
Starnett
 
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Thanks so much Charlotte for that very informative post. I will discuss some of these medical options and test with my consultant at my next appointment and I will begin looking into the various options regarding my diet in the meantime. I already exclude gluten as I have a severe reaction with bad GI symptoms if I eat anything with it in. I will look at the other things you have mentioned..

Thanks again
09-11-2016, 08:58 AM   #7
Charlotte.
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You are welcome! :-)
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