Crohn's Disease Forum » Your Story » New here & Seeking some advice

08-23-2016, 11:16 PM   #1
Join Date: Aug 2016
New here & Seeking some advice

Hi all,

Recently decided to reach out online here as my doctors have been trying for a long time to diagnose an illness that has been with me for over a year now, which they are now suspecting to be Crohn's Disease.

I first went to the doctor about 11 months ago about having severe lower stomach pains and nausea, that would have me on the toilet for 30minutes or so at a time, sweating profusely and passing burning stool, the pain/feeling was so intense I honestly felt like I was going to die then and there. It would come and go every 2 weeks or so The doctor told me to try monitoring my food intake and we would go from there.

So for the next 2 months, I watched my food, but still noticed a decline in my health, instead of every 2 weeks or so, every weekend I would have the same issues as before. When I returned to the doctor, he suggested that I cut out Gluten from my diet and return in a similar time period. So I did just that, and for a small amount of time (1-2 weeks), my stomach did feel noticeably better, but again declined to a worse state again, my stomach returned with the aforementioned horrible feeling, instead, this time, I had a mild feeling at all times (which has been manageable, but still quite uncomfortable) and every week or so extreme feelings.

So again I made my trip back to the doctor, who insisted on visiting a dietion but also suggested that it may be an IBD like Crohn's and that if I wanted to, I could schedule a colonoscopy. I opt'd for the colonoscopy because my work life and social life has taken such a terrible hit from being unable to reliably function. It cost me a small fortune but I felt it was for the best.

3 months later, I was booked in for my colonoscopy,, which returned only that there was high inflammation in the calprotectin tests - but no visible signs of Crohn's or IBD. So I went in for another test, and MRI I believe it was (had to drink a lot of thick stuff and have dye injected), around 1 month later, that came back with no visible signs of Crohn's.

At this time, the specialist suggested that it *could* be Crohn's, but she was not prepared to give me any treatment at that time, that we would have to take me off the lexapro that I was on.

Unfortunately, literally 2 days after that appointment, I was hospitalized due to appendicitis. The surgeons and doctors in hospital hoped that perhaps the appendix was the cause - but unfortunately was not the case.

Which leads me to now, the specialist I have seen gave me a list of options to exhaust, coming off of lexapro, monitoring my diet, taking turmeric tablets- Which I have and had no result, and have now started taking 2g pentasa granules in the morning, which seems to be helping.

I suppose I'm writing this just in the hopes that someone here can let me know if they've had a similar experience, It's very stressful when the doctors seem disinterested in helping or deal in "maybes" - It feels like none of them actually care and none of them have actually outright said, "This is what we are dealing with".

If anyone has any thoughts or opinions regarding my story, i'd love to hear them.

- Ben
08-23-2016, 11:31 PM   #2
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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Welcome. Can you go for a second opinion? I am sorry that none of the doctors seem to care.
08-24-2016, 09:56 AM   #3
valleysangel92's Avatar
Join Date: Dec 2012
Location: United Kingdom

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Hello and welcome to the forum, I'm sorry you are having a hard time but you have come to the right place to get support.

Firstly, you are not alone, it is unfortunately really common for people to have trouble gaining a diagnosis for conditions such as Crohns disease and ulcerative colitis. It took me nearly 5 years to finally get a diagnosis, so don't give up, you aren't going crazy and you can get help. Even after my diagnosis I had some doctors questioning it and squabbling over the best treatment to use, sometimes we really have to stamp our feet to make sure we get heard, so don't give up.

One option may be to go for a second opinion, as sometimes a fresh pair of eyes can make a lot of difference in a long term problem, sometimes the doctors we see on a regular basis get a bit used to us and therefore may not pick up on subtle changes.

A high calprotectin is a good indicator for inflammatory bowel disease, its uncommon to have an elevated level without the presence of active inflammation. There could be a few reasons for a negative scope - the inflammation could be too subtle to be visible to the naked eye, so the only way to see it would be under a microscope so unless they took biopsies they wouldn't of found anything, you could have been in remission (no active inflammation) at the time of the colonoscopy, or your inflammation could have been too far up for the scope to access.

As for the MRI, this would not pick up microscopic inflammation, so again that could be the reason nothing was seen, but in my experience a negative MRI doesn't always mean no inflammation. In the past I have had a totally clean MRI and then been littered with ulcers on a scope or full of inflammation on a special white cell scan.

Unfortunately IBD is difficult to pin down and it can be hard for them to give a totally 100% certain diagnosis, so there are occasions where "maybe" is the best they are able to give you. The main thing at the moment is that you are at least getting some level of treatment which so important as IBD can change very quickly.

If you notice anything different happening or experience a significant increase in symptoms then make sure you notify your medical team as soon as you can. If the medication you're taking stops helping or makes you feel worse then this is also something you should make sure you report as an alternative needs to be found.

I hope this has been somewhat helpful. I want to say that you are welcome to ask any and all questions you want, this is a very friendly community and we will always do our best to help in any way we can. There is no question too big, if we dont have the answer we will try to at least point you in the right direction, and there is no such thing as a silly question, we have all been where you are now and there is no need for any embarrassment. If you ever need to just vent, that's totally fine too, we are all in the same boat here and at the very least will offer a shoulder to cry on and a hand to hold.

coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, pentasa, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns:

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
08-24-2016, 11:05 AM   #4
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Join Date: Aug 2016
Location: brandon, Manitoba

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I am sorry that you are feeling this way. Based on what has helped me. I would move to a liquid diet for a few days and then slowly reintroduce a few soft foods back into your diet. I also avoid dairy, caffeine and gluten. After about 6 weeks now of eating this way things have really improved.

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