Introduction: time to face reality!

[RSG]

Hi!

So, following more than three years of defiantly (and stupidly) burying my head in the sand, I have decided to finally face up to my diagnosis. I've visited this site as a voyeur several times, but never felt sufficiently 'Crohn's-y' to feel I had any right posting here. However, after waking up to a dull ache in my abdomen for over 1000 days I figured I have little left to gain from solitude and ignorance. This is the first time I have reflected upon my 'story' with anyone - including myself - so forgive me if I drone on: it's news to me, too!

I was diagnosed with an IBD in November 2011, aged 22, at the fourth time of asking. This followed three misdiagnoses, including constipation and a damaged stomach lining. I have since forgotten the third misdiagnosis; processing Latin-sounding words from an uncaring stranger at 5 a.m., having been vomiting every fifteen minutes for eight hours, pales into insignificance when one is experiencing for the first time the taste of regurgitated faeces. Anyway, I digress.

I say 'IBD' as I am unsure whether I have been diagnosed with Crohn's disease or Crohn's colitis or ulcerative colitis. Again, my mind was elsewhere as the nurse/doctor discussed my colonoscopy - I was still perfectly high from the drugs. My mum's brain seems to be easily influenced and highly revisionist, so her account of the conversation can rapidly mutate with simple questioning. I've attended biannual outpatient appointments but the subject of my diagnosis has never came up. I just haven't cared. I take my medication (pentasa) inconsistently, as it seems to have little, if any, effect.

The crux is this: I have so adamantly avoided learning about my condition that, 3 years in, I have no idea whether I am doing anything drastically wrong or remotely right. It took me two years to realise I had been enveloped by depression, and I have no idea whether this is a common effect of the condition or completely unrelated. I am hopeful that the members here can help me better understand the nuances of my condition, and that I can offer any advice or support to others. If anyone has managed to read this far, may I ask a few questions (I don't know if this is the right place):

- my ileum is the apparent area of concern, and the corresponding area emits a dull ache almost constantly, and is often sore to the touch when I press down on it. Is this a common symptom or something I should take more seriously?

- I consume, on average, two bottles of whisky each month, often going through more than half a bottle in one sitting. Other than the obvious physiological risks, is this particularly risky with an IBD?

- Does the feeling of being inadequate - something of a biological failure - ever subside? It has severely knocked my confidence and I can't seem to shake the feeling of embarrassment whenever it comes up in social situations.

Thank you very much for taking the time to read this, I have missed out a lot of information but it is already far too long. I hope my flippancy towards our shared condition does not offend anyone. I feel as though I am extremely lucky to only have what appear to be mild symptoms, and I feel somewhat unworthy of posting here.

Thanks again and nice to meet you,
Rikki

 

[Justanothercp]

Welcome. Hope you can find some answers and direction from the group.
Let me give you my take on your questions.
First, I think depression is a very common side effect of the disease/diagnosis. And the ongoing discomfort can also be depressing. I know for myself, once I started learning and developing at least a bit of control my depression got better.
Second, I think the chronic pain/ache in abdomen is all too common, but can develop quickly onto something more serious.
I think most people would agree that alcohol (along with a lot of other things) is not good for Crohns. Diet is very controversial and individualized. Personally, I found the Paleo diet to make a huge difference for me , maybe even more so than the Meds. (I take Remicade, Lialda, Budesonide, Omeprazole, and an assortment of supplements).
And I know what you mean by the feeling of being a "biological failure", but for me it did pass. I must admit, for me a lot of this was due to perspective, I'm in healthcare, so seeing people with much worse circumstances helped me get rid of the "poor me" thing I had going.
Wishing you luck. My advice: educate yourself and try to take control.

 

[k5disney]

Hi Rikki,
I also lived a bit in denial with my Crohn's diagnosis. I was diagnosed at 17 and embarrassingly, enjoyed the weight loss that came with the disease (I needed to lose a few pounds anyway). I continued to live the best as I could and partied along with all my friends. I have learned the hard way that alcohol is definitely NOT my friend (although I certainly still drink on occasion).
I also have felt like a "biological failure", although I have never put it into those words before now. The rest of my family is perfectly healthy and I thought for a long time that I could "beat" Crohns with the proper diet, exercise, and will power. That has proven not to be the case. Even when the pain goes away, there could be a storm brewing inside and the last thing you need for your confidence is to end up in the hospital with a pic line! Do what your doctor recommends and keep truckin'. One day you will get to that lovely place called "remission"!

 

[Trysha]

Hi Rikki
Welcome to the forum
It takes courage to publicly acknowledge our failures
It took me three years to finally accept the crohn's diagnosis and allow treatments
The depression takes it toll also and I think it is quite common with crohns
Alcoholic drinks have never agreed with me ,funny how we think a stiff drink will do some good but it did not for me.,in fact it made matters worse.
Perhaps you need a different crohn's therapy in addition to or instead of the pentasa
You could discuss this with your doctor.
Usually crohn's patients are followed on a regular basis
You should not put up with the pain best speak with the docs about it.,and enquire about other options
Feel better soon
Hugs and best wishes
Trysha

 

[Grotbags]

I would cut back on the booze personally, some of the meds used to control IBD's can have a detrimental effect on your organs over time, it would be sensible for them to be in good shape to remain healthy for as long as possible.
I'm not saying don't drink btw, just reduce it a bit.