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Arow1
New Member


Date Joined Nov 2017
Total Posts : 6
   Posted 11/9/2017 1:32 PM (GMT -7)   
Hi, just have a few questions regarding my partner who is yet to have a confirmed crohns diagnosis but has suffered the last two years.

A bit of background information, he is a 20 year old male who was previously quite overweight- 100-110kg. In December 2015 he began to have severe abdominal cramps and diarrhoea 20mins after eating anything. Along with this his appetite diminished to the point of eating one or two bites and feeling full and intense nausea. Initial diagnosis was that it was a result of stress and depression.
By February/ March 2016 he dropped 50kg and was struggling to maintain a weight of 50-60kg, although he was only eating one meal a day.
A colonoscopy and endoscopy came back with nothing too abnormal so a diagnosis of IBS was given although the symptoms were still the same in severity.
He is not currently on any medication but does smoke weed before meals in order to gain an appetite and this seems to delay the diarrhoea until the next morning although this result in 4-5 watery and sometimes explosive BM's in about an hour. He currently drinks a glutamine drink every morning and I have started him on a low residue diet as of yesterday after reading some posts in this forum.
We just don't know what to do anymore, he is constantly fatigued and close to giving up hope. He is very adverse to taking medication, although so far only e-citalopram has been prescribed which he no longer takes.
Does anyone have any advice or tips on what to do? He is still struggling to maintain 60kg which is a requirement for him to continue working which only adds stress to his eating.
Thank you in advance for any help

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15177
   Posted 11/9/2017 1:46 PM (GMT -7)   
Hi Arow, you say the colonsc/endosc are basically normal what did the reports actually say? If he does not have the results of these tests he can call the drs office & request copies. The symptoms you are describing are consistent with IBS. We do have an IBS forum here at Healing Well. I suggest going to that forum & do some reading & make a post over there. IBS can be tough to deal with. Many find they are lactose intolerant, diet also plays a role. If he is not happy with the gi dr he consulted with, get a second opinion.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Arow1
New Member


Date Joined Nov 2017
Total Posts : 6
   Posted 11/9/2017 2:03 PM (GMT -7)   
Thank you for your quick response, there was a duodenal hernia and patches of inflamation/ bumps along the large intestine, although this gi didn't seem concerned by this, we are booking in to consult with another gi doctor to get a second opinion.

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1762
   Posted 11/9/2017 2:41 PM (GMT -7)   
The last line of your last response says it all. You really need another opinion. There are many on here that have had to see several GI's until the felt confident. At the same time, it could be many other digestive disorders or even an infection fo some kind.

Did they do biopsies in the colonoscopy? Has he had a full blood work up? Was he tested for Gluten sensitivity or lactose intolerance? He might even resort to a food allergist for testing.

Hope he gets feeling better soon.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15177
   Posted 11/9/2017 2:47 PM (GMT -7)   
The patches of inflammation/bumps are reason enough to see a new gi & have another colonoscopy done with biopsy's. In additional to what 73Monte posted he should also request a stool test to rule infections & other pathogens.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Arow1
New Member


Date Joined Nov 2017
Total Posts : 6
   Posted 11/9/2017 3:07 PM (GMT -7)   
He has been tested for celiac's and had some blood work done but we never actually told what that was for or received the results of this. There was a biopsy done during the first colonoscopy but all we were told was that it wasn't cancerous. Hopefully we will be able to see this new gi this side of Christmas and I will be requesting that all of these be done.
Thank you again for your help!

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10021
   Posted 11/9/2017 3:08 PM (GMT -7)   
What an utterly useless GI.

See a second one and make sure he gets a colonoscopy and a small bowel test which visualises the entire small bowel, e.g. MRI scan or a capsule endoscopy.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

Arow1
New Member


Date Joined Nov 2017
Total Posts : 6
   Posted 11/9/2017 3:16 PM (GMT -7)   
Thank you, I'll add those to my list! Yeah he was absolutely useless, I've been doing my own research and lots of trial and error the past two years because he refused to listen and take our concerns seriously.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10021
   Posted 11/9/2017 3:34 PM (GMT -7)   
I'm just amazed at how bad some GIs can be. Given your partner's age, weight loss and symptoms, Crohn's really should be one of the first thoughts. Yet an endoscopy can only see as far as the duodenum - that's basically nearly 20 feet of small bowel that wasn't looked at. As for "a biopsy", I'm not sure if you literally meant a single biopsy but if you did, one biospy isn't nearly enough. Usually lots of biopsies are taken during a colonoscopy, from different parts of the colon and the terminal ileum.

So yeah, good luck with the new GI. I hope they're better! (And don't be afraid to ask questions.)
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

Arow1
New Member


Date Joined Nov 2017
Total Posts : 6
   Posted 11/9/2017 3:47 PM (GMT -7)   
That's why I was so angry that he refused to take us seriously, he had lost half his body weight in 2-3 months!
I'm not sure if it was a single biopsy or multiple since there was very little communication on the gi's part. But thank you so much for your help, if we have to visit multiple gi's then we will.

BETTY SUE
Regular Member


Date Joined Nov 2015
Total Posts : 227
   Posted 11/12/2017 3:17 PM (GMT -7)   
That is incredible. HALF his body weight and the GI basically said "not cancerous?" There are a lot of diseases between "fine and not cancerous." Keep searching for a competent GI. When my son (now 21) was diagnosed two years ago I went in to each appointment with a detailed list of questions (my son was often too sick to even ask questions) and when a GI did not give me complete answers or somehow dismissed my concerns I crossed him / her off the list and went to another. After "interviewing" eight different GIs I found an incredible one. He takes my son's questions seriously (my son no longer needs me at the appointments and has taken over his own care) and responds immediately (even giving my son his personal cell number). It has taken a long time to get here but well worth it. Best to you as you keep searching. There is a wide range of competencies in GI's - but they can be eliminated one question at a time!!

Arow1
New Member


Date Joined Nov 2017
Total Posts : 6
   Posted 11/12/2017 4:23 PM (GMT -7)   
Wow that sounds like an awesome GI!! Yeah it was horrible! I believe the GI refused to take our concerns seriously since we are both so young (we were 19 at the time of visiting.) So my partner is signing up for health insurance so that he can visit private GI's since our public health care in NZ is useless. From the previous posts I have come up with a list of what tests we need and a list of questions that we need to ask so hopefully we can find a good one quickly since his symptoms are still so bad and it's affecting his mental health too.

BETTY SUE
Regular Member


Date Joined Nov 2015
Total Posts : 227
   Posted 11/12/2017 4:59 PM (GMT -7)   
Good for you to have a list of detailed questions and ideas of possible tests. My son had colonoscopies, an endoscopy, an MRE, CAT scan, tested for Celiac and Pylori and C- Diff (which he had three times) but he needed every one of those tests. This forum is filled with a lot of experience and they have been incredibly supportive to me especially when my son was first diagnosed. This disease takes so much from people that I am grateful for every tidbit of wisdom, ideas etc. I get. I hope your partner gets the help he needs and can be on the road to feeling better and getting the right diagnosis and treatment. My son had a tough 18 months (surgery, hospitalizations etc) BUT he is now in a deep remission so it can and does get better! Let us know how it is going!
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