Crohn's Disease Forum » Your Story » Starting this journey again?

10-24-2017, 03:16 PM   #1
Join Date: Oct 2017
Starting this journey again?

Hi there!

Iím new on this forum.. thus far it has been great reading all this information! I donít have a diagnosis (anymore), but Iíd really appreciate your advice/inputÖ although Iím afraid itís quite a long story..

For me, it all started about 8 years ago, after Iíd had surgery on my knee. Initial symptoms were severe nausea, abdominal pain/cramping (waking me up almost every night), weight loss (about 40 lbs in a few months) and joint pains. Doctor said that it was all in my mind, that I should just start eating again and maybe see a psychologist (which I did, but she said that psychologically, there was nothing wrong with me). I then went to see a dietician, she advised me to try gluten free and Ensure, which made me feel a bit better. Over the following years, I had symptoms on and off, but didnít really feel like visiting another doctor.

Three years ago, things got really bad: diarrhea, with mucous and sometimes blood, severe cramps, nausea, not able to eat anything, low-grade fever and just feeling really unwell. Since my father suffers from IBD, I got referred for a colonoscopy. Two doctors tried for an hour to pass the scope into the ileum, but didnít succeed. They said I had a stricture, inflammation at the ileocecal valve and some small ulcers in the colon. According to them, Crohnís was the only possible explanation. A week later, I got the results of the biopsies, which showed minimal inflammation. GI then said that, seeing as there was no active inflammation, surgery would be the only option for the stricture. I was quite shocked by this and requested a second opinion. The other doctor agreed it could only be Crohnís, but wanted to see it herself, just to be sure. You can imagine my surprise when I woke up after the colonoscopy and she told me everything looked perfectly fine: no stricture and no inflammation. In the following months, I had an MR enterography, which was fine, and a gastric emptying test, which showed delayed gastric emptying. I got prescribed metoclopramide and referred to a psychologist once again (who, again, concluded it was not a mental problem). By this time, Iíd had enough and I decided Iíd just try to manage symptoms myself, with some help of my GP and dietician (still using Zofran and Ensure, which I definitely needed to maintain weight).

Then, two months ago, I had major surgery to my knee. I opted for spinal anaesthesia (have had nine operations already and always vomit afterwards), but that didnít prevent me from getting extremely sick, to the point I got dehydrated and was on IV fluids for a few days. Iím not vomiting anymore now, but Iím still nauseous all day and not really able to eat anything. Lost quite some weight again and Iím feeling so tired that, when Iím not going to physical therapy, I can only lay on the couch and sleep. Surgeon said this is not normal and I should go back to my GP, which I did.

The GP (new one, old one retired) thinks itís a really strange story. He couldnít imagine they saw an obstruction that wasnít there and also wonders why I would have delayed gastric emptying, just like that. He suspects that I still (or again) have an obstruction/inflammation, which flared up due to the stress of the surgery, and wants to do a faecal calprotectin test.

Iím not entirely convinced, especially since the MRI a few years ago didnít show anything either (but doctors says inflammation can come and go). Did anyone of you ever had a colonoscopy, showing inflammation/obstruction, that wasn't there? Do you think itís worth the energy to start this process all over again? Or would it be better to see a dysmotility specialist and focus on the delayed emptying? To be honest, Iíd rather not visit any specialist at all, but as Iím not able to make good progress with my knee due to these symptoms, Iím afraid I donít really have a choice..

Thank you so much in advance for your advice!
10-24-2017, 03:52 PM   #2
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I am not sure but I would go along with the new gp
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
10-24-2017, 07:03 PM   #3
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I'd probably continue on and try to get some answers.

Fecal Calprotectin (FCP) isn't too bad to do (compared to a colonoscopy, it is a walk in the park!), and might show if there is some inflammation causing the latest round of symptoms. I really don't know anything about delayed emptying, so have no advice there.

I've only had MRIs when they were looking to see where my fistulas go, so I am not sure how go they are to show inflammation. If they saw inflammation/obstruction during a colonoscopy, then I am sure it was real and could have subsided in between tests. Sounds like it is back now and is really making your miserable and stunting your knee recovery, so a FCP seems like a good first step.
Diagnosed in with Crohn's in large and small bowel in 2000. Fistulas followed soon after.

Seton placement (2) and fistulotomy December 2013. Setons removed July 2014. 3 more setons June 2018.

Laparoscopic Right Hemicolectomy July 2016, 25 cms removed

Current meds: Humira, Entyvio every 4 weeks, Levofloxacin 750 mg, Vitamin D

Previously: Remicade, Simponi, Pentasa, Sulphasalazine, Entocort, Stelara, Methotrexate, Prednisone, Imuran
10-30-2017, 08:36 AM   #4
Join Date: Oct 2017
Thank you for your replies!

I decided to go along with my GP and have the calprotectin test.. The results will be in next week and in the meantime I'll try not to think about it too much (sometimes that's difficult, as weight loss and tiredness are only getting worse, but thankfully, a week is not that long).

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