HELP! Retracted Diagnosis, Now Labeled "Severe IBS"

[gadgetninjette91]

Hi everyone here, I'm part of the undiagnosed support group but I need to start my own thread so others can see and provide their input as well. I'm in a very bad place right now and could use as much support as possible.

Last year I was diagnosed with what looked (colonoscopy/CT scan) like small bowel Crohn's disease (jejunoileitis) which is rare enough in and of itself, but my clinical history (severe, dramatic weight loss, severe fatigue rendering me unable to move, constant diarrhea and nausea, occasional vomiting; I also have had joint pains in my knees and ankles) strongly suggested it at the time. I was put on Pentasa and sent on my merry way. I was given a repeat colonoscopy and CT after treatment which everything came back "normal". I'm now being told that the inflammation found in my intestine was related to the colonoscopy prep. How on earth can that cause inflammation and ulcers that look just like Crohn's? My biopsy said likely Crohn's or NSAID-related injury (and it can't be that because I know the dangers of taking NSAID's and won't take them, that was before any of the Crohn's stuff started happening). Pill cam came back with "nothing", then after I wasn't getting better a CT scan found small intestinal thickening in both the upper and lower small bowel but the radiology report only mentions the swelling up above which doesn't help either. Nevertheless, ulcerations or not, there's still evidence of inflammation all throughout my small intestine. I also tested positive for fructose malabsorption and bacterial overgrowth.

The Pentasa has taken care of about 75% of the problem. The other 25% of the time I'm doing horribly. But doctor after doctor keeps fobbing it off as "severe IBS". I have yet to find someone who will truly listen except the doctor who initially diagnosed me, and I had to move to another state so I couldn't keep seeing her. But I'm pretty lost and don't know what to do. I can't find anyone who will take me seriously or take any of my clinical findings into consideration. Other things that work against me are mental health history and the use of, ahem, alternative medicine.

I lost half my body weight and can hardly gain any of it back. Somehow this is characteristic of IBS??? 45 pounds? Really??? Am I wrong to think I'm being mistreated?

 

[ronroush7]

No, I don't think you are wrong. I wish that you could get the second opinion of someone who would listen. Keep pushing until you get answers. Keep us informed.

 

[gadgetninjette91]

Bump

So far no answers til June. Hopefully things don't get much worse.

 

[ronroush7]

Can they see you earlier if there is a cancellation,,

 

[JaimeM]

If I were you I would try to get into Mayo or somewhere that is a top rated dr for IBD.. I went to mayo in February and they were able to get me back on track and doing much better.. They are the #1 IBD center in the US.. So they know what they're doing.

 

[Ihurt]

Have you been tested for Celiac disease? People with celiac usually have inflammation in the jejunum. I think SIBO can also cause inflammation in the GI tract. I would seek another opinion.

 

[gadgetninjette91]

@ronroush7 I may call back and ask to get on the cancellation list, good idea, thanks!

@JaimeM Can't think of another IBD specialty clinic in my area that didn't already say "we have no idea". Makes me question whether experts are truly experts if they can't figure it out either.

@Ihurt Celiac testing all came back negative. I was on multiple rounds of antibiotics in between the colonoscopy and the CT scan. That inflammation couldn't have been caused by SIBO alone.

 

[Sibh]

@gadgetninjet91 I am in a similar place right now.it's a terrible feeling to not trust or feel confident that your doctors are doing their best by you.I wish all doctors were able to correctly diagnose and treat patients.been seeking a diagnosis since I was 11 been told I was constipated had ibs rubber glove test noted blood so told proctitis then after camera tests when I was 14 and a half was diagnosed with crohn's the doctor noted inflammation on and off from oesophagus to anus.was on medicine and enemas during flares and maintenance dose for life.this worked well for years but after a particularly bad flare wasn't stopping the bleeding etc I thought I must have become immune to the medicine and needing to try different medicine.I saw a different doc who said she sees from my files that I have had a traumatic childhood but didn't explain what she meant by that but I presumed she was referring to my foster care history.that I must be a stressed individual in need of counselling and she prescribed medicine for spontaneously vomiting acid and although I had terrible diarrhoea she prescribed something for constipation and wrote on prescription classic ibs with possible proctitis in past.She told me to stop my usual medicine.after many months of getting worse I started to try to get referred to different doctor who I told I wasn't happy with the other doctor who had also seen my sister and said the same,she's now in Australia on infliximab infusions etc awaiting a series of operations to remove her entire bowel.This doctor got defensive saying she thinks the other doc is right that she will arrange for camera up and down and if no inflammation is found I will have to buck up and accept it and stop seeking different opinions.was shocked and upset by this and should have realised that I struck a nerve.Since,I have discovered that they are friends and on two hospital lists together.my exams are in 2 days I'm feeling very unhappy and helpless.