Crohn's Disease Forum » Your Story » Hi! (and question about experience with...)

04-26-2017, 04:02 AM   #1
Join Date: Apr 2017
Location: bussum, Netherlands
Hi! (and question about experience with...)

Hi all!
I am a med student, 25 and I live in NL. Im going through the whole research thing. Oddly enough IBD is exactly what I am studying in class these months too xD.

I had quite a-specific symptoms that led me to going through research. in 2 years I have been brought to first aid five times, for a very sudden attack of colic pains, starting in the left bottom of my abdomen, with me begging the doctor to cut whatever there was out of me. Each time they found nothing in examination nor blood results, and weirdly enough it always it got better very quickly (with or without pain killer) and it was gone after 3-4 hours.

But I have been having most of those attacks in the past year, and for months before start of the research I was having pain more often, sometimes not leaving my bed. It seemed to do with bloating and/or obstipation and was still often of short duration. I couldn't relate it to food or stress, it seemed random. Also I lost 3-5 kilos in half a year (which is a lot since my normal BMI is 18). and I was less hungry throughout the day. Apart from this and sometimes obstipation (due to low water intake usually) I have no other symptoms whatsoever. Not tired, no blood, no weird BM.

My GP sent me to the hospital.
Blood results: reduced MCV, increased ubound iron, , lower Hb and minor inflammation values (but I was having a sinusitis at that time so obviously imflammation would show already)
Echo: gynaecologicly nothing to report (yaay!). Intestinal: a very minor colon descendes/sigmoidium inflammation. it seems to go towards crohn and they want to cross it (and CU/ any other IBD of course) off the list to be sure.

Awaiting those results, Dr told me to eat more fibers in the mean time. I did for a week -it helped- , and after I just forced myself to eat more like I used to do, but no real diet changes. I did start to drink more water, and water Kefir (a probiotoc) and no trouble ever since (2 months now!). Still, Dr wants to do coloscopy and take samples to be able to diagnose/ exclude it. She said if I have a minor form it is just good to know. But I am wondering: what would it change for me if I would be diagnosed? Obviously with a sudden pain attack ot any pathology I understand additional medical necessity, but if there is nothing wrong with me while I eat/ drink good, how would it help me? I do not want to take daily medication unless I really see frequently that I need them to put whatever is there into remission, and Dr did not seem to have daily meds in mind either.

So, why do this research? Why not wait and see what happens. If nothing returns, why not leave it at that?
I am not scared of this coloscopy and want to do what is necessary, but I know from my own study how hospital Doctors often pathologize and medicalize symptoms: they forget physiology and sometimes even forgot that the body can actually fix many things by itself or by natural remedies. They just have to give everything a name, and I disagree with that unless you really are in need of medical treatment and the diagnose can really help you further. Meanwhile, I will redo the blood test, also out of interest of my values after these 2 months. Dr said it won't change her thought but I just wanna know for myself =).

What do you think about all this? - sorry for the big story xD prefer to be clear -
And is there anyone with IBM who is very happy having just consistent dietary changes?

Thanks for reading and any response! =)
04-26-2017, 05:37 AM   #2
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Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

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Crohn's disease is unpredictable and can have serious consequences that can occur out of the blue. Some people have no symptoms but have silent irreversible damage going on on the inside to their bowels. Some people can have mild disease, but this can progress to become severe.

Before the use of modern treatment in the 1950s and 70s, the risk of dying from a serious Crohn's attack was around 30% - 60%. Life expectancy was greatly reduced. Now the risk of death is less than 3% and people with Crohn's have a near normal life expectancy.

In Crohn's disease, having untreated inflammation puts you at risk of bowel cancer, perforations, internal abscesses and obstructions (among other things), all of which could need emergency surgery to treat with the risk of you being left with a stoma bag. People with Crohn's disease have a 70% risk of needing surgery at some point in their lives. Many of us on this forum have had one surgery or another. It is much better to try and avoid surgery, or have planned surgery rather than chance emergency surgery.

If diagnosed with Crohn's disease you would want to ensure you are combating the inflammation and are regularly monitoring it for any progression. Some people (I have heard) are able to use natural treatments like special diets to control their inflammation. They would need to be monitored closely to make sure no silent damage is happening. The vast majority of us require medication to keep things in check. Even when our disease is in remission and there is no sign of inflammation, we have to stay on our medication with the hope of avoiding the above complications developing.

For some people their blood results are normal when they have Crohn's. It can be tricky to diagnose but the diagnostic gold standard is a colonoscopy. However, even this can be normal in a small amount of people if they have disease high up in their small bowel where the colonoscopy cannot reach. They may need other testing such as an MRI or pill cam to be correctly diagnosed. But the first and best step is a colonoscopy.

I wish you luck and hope you do not have Crohn's disease.

2nd Generation affected

Symptoms since 08/2006 (age 17)

Emergency open bowel resection after perforation in 12/2011 (age 22) (wrongly diagnosed as burst appendix ). Three years remission following this unmonitored

Perforating small bowel Crohn's Disease 01/2016 (terminal ileum, duodenum)
Coeliac disease (age 26)

50mg azathioprine (down from 75mg after my WBC dropped)
Gluten-free diet

Last edited by eleanor_rigby; 04-26-2017 at 08:41 AM.
04-26-2017, 08:51 AM   #3
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Join Date: Oct 2013
Location: vienna, Virginia

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I agree
04-27-2017, 11:59 PM   #4
Lady Organic
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I agree with the above too.

''Intestinal: a very minor colon descendes/sigmoidium inflammation. it seems to go towards crohn and they want to cross it (and CU/ any other IBD of course) off the list to be sure.''

left bottom of abdomen where you have your painful attacks is where the sigmoid is located...

Definately important to check it out and treat it if its IBD or any other pathologies. you really want to avoid any possible complications. let us know, wishing you well.
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
04-28-2017, 02:45 PM   #5
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Join Date: Nov 2013
Location: Oregon

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I feel better having all the information, so I would encourage you to get the colonoscopy. Then you can make a more informed decision about diet, medication, etc.

Diet (SCD) has made a huge difference for me (I also take Pentasa, probiotics, Curcumin, and Iron), and I agree that in my experience doctors have been fast to jump to saying I should be on more intense medications, when I have then been able to get things back under control without them through diet and lifestyle changes.
It is still important to me to stay on top of my lab work and know what is going on internally, so that if it gets to a point where I really do need to make a change in my medication I'll know before things get serious (which could be the case just waiting for symptoms).

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