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Crohn's Disease Forum » Your Story » Opening up for the first time


05-22-2014, 02:02 AM   #1
WA_REA_509
 
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Opening up for the first time

Good evening -

I've never been very good about letting my guard down or opening up to anyone about my personal struggles, so let me start off by emphasizing that this is difficult for me. I've started this post maybe a half dozen times before and have deleted it every time. I feel embarrassed, ashamed, self-conscious, vulnerable...Even with the cloak of anonymity that the internet provides, I am still finding it very hard to write my story. It's almost like this is that pivotal moment where, if I write this down and share with someone else, there's no going back and I have to give in to the fact that this "Thing" really isn't going to just get better on it's own and I need some help. I guess it means that I'm finally admitting that there is, in fact, something wrong with me...

I am a 32 year-old male and I have been suffering from my symptoms for probably 15 years or more, but they are getting worse and I am getting more and more concerned. Until recently I've been able to sort of manage my "issues". But now it's really beginning to take a toll on my everyday life. I suffer from moderate to SEVERE cramping in my stomach/intestines that usually leads to diarrhea and/or vomiting. At times the diarrhea is so intense that my rectum/anus will almost spasm and clench on its own for minutes afterward, as if "dry-heaving". This usually occurs between 15 minutes and 2 hours after a meal and there does not seem to be any discernible triggers causing the cramps. This doesn't necessarily happen after every meal and sometimes just comes on randomly, even when I haven't eaten that day. It also does not necessarily correlate to a time of day. I've woken up and had an attack before breakfast, and I've been awakened in the middle of the night with an attack. Until a few years ago, these attacks would happen maybe once a month, or only after eating out at a restaurant. Now I am having attacks nearly every other day, sometimes more. Just today, I had to pull my son out of his baseball practice because I had a VERY urgent need to get to a restroom and I was afraid that I wasn't going to make it. This sort of scenario has happened to me on many occasions, making it very difficult to live a functional life.

Aside from the cramping/diarrhea/vomiting, I also suffer from hemorrhoids (probably related to the diarrhea) and had a fistulotomy in 2012. At that time, the GI doctor asked if I had heard about Crohn's or if I knew of a family history of it. He suggested running some tests but, having no health insurance, I never pursued the testing. I just chalked it up to IBS and kept on doing nothing. It has gotten noticeably worse since then, and I have often thought about getting tested, but as I said before, I'm not good at being vulnerable and putting myself out there.

About 2 months ago, I visited a natural health doctor in my area and after a long discussion I decided to try using medical marijuana to curb the pain and nausea when having an attack. I have to say that in small doses I have experienced a positive reaction to the marijuana with shorter cramping sessions and lessened nausea. But it's definitely not a fix.

So, I guess what I am ultimately looking for is someone with experience to read about me and tell me what to do next. Here's a list of all of my symptoms, related or not:

- Severe Cramping
- Nausea/Vomiting
- Diarrhea
- Hemorrhoids
- Fistula Operation in 2012
- Fatigue
- Depression
- Anxiety
- Moodiness

I'm looking for ANY opinions, good or bad.

Thanks for listening
05-22-2014, 02:17 AM   #2
theOcean
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Going by the fact that you have a fistula, you definitely have Crohn's, and a severe form of it. I have it as well.

You do need to get testing. You really need to go to a hospital. You need to at least be referred to a GI and be put on medication, likely biologics (the heavy-duty medications) and they might warn you that there's a risk of cancer by going on them but that has recently been disproved. You may know of them by name as Remicade or Humira and I will be amazed if you are not put on them. They can be expensive but they are incredible, life-saving medications, and I speak from experience when I say that. My Crohn's has nearly killed me twice.

Untreated Crohn's is far more dangerous than any of the medication for it, if the idea of medication worries you. It makes you prone to colorectal cancer, internal bleeding which you're likely already having, stricturing/narrowing of the colon/intestines, and in severe untreated cases: you can possibly die from the complications, as I almost have.

I'm thankful that you finally spoke up about what you've been experiencing, and hope that it means you're willing to seek help for it, too. I hope I can help. I'm happy to give advice or answer any questions you may have.
__________________
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
05-22-2014, 02:19 AM   #3
theOcean
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I'm also sorry if my response comes off as harsh: it's mostly that I'm very worried about your condition from what you've said, and it makes me remember what I've gone through, too.

Additionally, if you're feeling uncomfortable about talking about things publicly: you can send me a private message, too.
05-22-2014, 11:41 AM   #4
valleysangel92
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Hello there, welcome to the forum.

I know it's probably not what you want to hear but I must agree with TheOcean . You need to get testing done and sooner rather than later.

The kind of symptoms you describe are typical of crohns and fistulas are a sign of severe, aggressive disease. Without proper treatment this can result in emergency surgery or worse.
We aren't here to scare you or to judge you, we just want to help you. We know it's scary to face something like this, and I can really relate to the feeling that telling someone makes it more real. I remember making my first post here, and feeling like I'd closed my fate, there was no going back. But now I'm doing much better and I realise that having the support of others here has made the journey so much easier.

There are many things that can be done to improve your quality of life and control the disease. New discoveries are being made all the time with New medications and ground breaking surgeries and there might even be a cure one day.

Before all this can help you need to face up to your illness and get yourself tested and treated. If this is crohns disease, and that sounds highly likely to me, it will only get worse if you don't get it treated. My step cousin spent 5 days in intensive care with severe undiagnosed crohns disease and is now trying to avoid her 4 th surgery. If her doctors had tested her sooner she may never have got that sick. So please, please get yourself checked our properly and let your doctors help you. We will be here for you if you need emotional support or if you have any worries or concerns about any of the tests or medications. You are not alone.
__________________


Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
05-22-2014, 02:35 PM   #5
worriedboy
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Hi Dear,

I'd like to relate to your things from several points of view...hope it's not too bothersome.

1) Choking it up is a common problem especially among men (although of course exists among women as well). it does not make you less a man or less a person if you are sick. I know, it requires a change of attitude, but it is possible. Choking it up is one of the most stupid things I have ever done in my life. It makes so much harm... both mentally and phyiscally. It isolates you in a way that you end up so lonely.
You sound like a strong persom. Please try to think of it that if you had so much strength, energy and willpower to carry on with it, you must have the power to treat it.
Why keep suffering ? Treatment could make your life so much more.

2) I am NOT a doctor, but it surely sounds like Crohn's to me. I agree with all of the above replies, but repeat it again. You must see a GI. ASAP.

3) If this is Crohns, it looks like you are flaring badly. This means that you have to get a treatment ASAP in order to avoid permanent damage. If diagnosed, you are likely to get both short an long term medications. The short term are typically steroids which knock down the inflammation and this will most likely make you feel much better. The long term medication to keep you in remission are either biologics as mentioned by the above posts and/or immunosupressants.

Please dont be overwhelmed ! One thing at a time ...


4) I know that taking it out is hard. I was used to be ashamed as well, very much actually. Very few people around me knew about my condition, or they knew I had something but had no clue of what. Until that day I find no real gain in it; I mean, find the middle way. Talk to those whom make you feel better when you are talking to. Dont talk to those who dont.


5) I get the feeling that you are having very hard time to acknoledge that you will have to be "out of the game" for a while in order to take care of yourself. That's a common feeling as well. But that might be the best thing for you. If you are so sick - you are no good neither to yourself nor to those who surround you.


All and allyou must treat it; whatever it is, whatever the cost, you must do EVERYTHING IN YOUR POWER to gain your health back as much as possible.



Please see a doctor. As the others, I am worried for you.
Also, this is an incredible forum with such a caring community. I really did not come across such a group of people so often if at all; take advantage and use the forum to share, ask, tell. This will help you, and may help others in similar conditions to go through it.



Hope you feel much better soon. Come back and update.
05-22-2014, 08:12 PM   #6
mallowpufft
 
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I'm gonna join the rest and say go get checked out immediately. I found out I had crohn's when my small intestine ruptured and I went into septic shock.
I don't recommend that method to anyone. And the biologics are amazing. I had a fistula the size of a large egg a couple years ago and within a few weeks of Humira, it was greatly reduced.

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