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Has Anyone With Crohn's Experienced This?

Posted , 5 users are following.

AmberAleen
AmberAleen

Hello. I "may" have crohns. My blood work was normal. That had me upset bc I KNOW something is WRONG. I have SO MANY of the symptoms and I have been so sick for years. It's been a battle. I was scheduled for a colonoscopy but had to cancel bc I'm a single mother of two young children and just couldn't afford to miss work. 

My question is a bit embarrassing.... but I'm going to ask anyhow,... this happened recently, and for the first time ever... 

My stomach started hurting which wasn't unusual, just unwelcome. Lol Of course chills and hot sweats along with nausea followed, also normal for me... I felt my bowels gurgling in a way they generally don't, I stay with constipation more than diarrhea, but it was the latter. I made my way out of the bed to the potty which was very painful. Once on the potty the pain in my stomach intensified as it never had before. Within seconds, sweat was pouring off of me, my clothes were so wet you could ring them out... (I'm a runner, I can run ten miles and barely have sweat spots on my clothes) I got EXTREMELY dizzy and I had to concentrate hard not to pass out. My face went numb, blackness overtook my vision. At home, alone with my two small children... all I could think was 'please no, please don't pass out like this!!!' My bowels began working and after about two solid stools everything broke lose. After about a two minute stretch of relief from the pain it started again. Sweat pouring again. I pooped, or I thought I did. It wasn't poo. It was nothing but blood. The toilet water was red. I wiped, it was blood, bright red. And a lot of it. 

After what seemed like hours, (probably 30 minutes) I dragged myself to the bed. I just couldn't go to the ER. I was in so much pain I couldn't move, couldn't walk, my entire body hurt but not as bad as my stomach, I couldn't shave driven myself to a hospital if I wanted to.... 

and who wants to call an ambulance to report they are pooping blood? What if I had to poop when I was on the ambulance... and that type of pain? I didn't want to be touched at all. 

It passed. The next day I was weak and still hurting in my stomach. It took about a week before I started to feel normal again. 

My question is, Has anyone else experienced this? 

1 like, 10 replies

10 Replies

  • rose45257
    rose45257 AmberAleen

    Posted

    Hi Amber

    Welcome to the forum there is a huge amount of support here.

    I'm so sorry you have had such a painful and distressing episode...and yes I have had this happen to me very recently, its horrible and very scarey if it has not happened before.

    I had this previously and have managed like you but only a fortnight ago today I ended up going into hospital as an emergency as I became extremely unwell and felt I was going to collapse. I too didn't want to go as I am sole carer for my mum who I live with but after 11 hrs of severe pain I would probably have passed out and that would have been worse for both mum and myself. At first we tried the non emergency number for out of hours dr to ring and advise but I ended up going in the ambulance. I had profuse sweating and feeling faint also dizzy and nausea followed by vomiting. I also passed blood this time.

    I was dehydrated and needed urgent intravenous fluids, steroids and antibiotics which I had for 3 days. I too still have a little doubt over my exact diagnosis although told my tests and symptoms show inflammatory bowel disease. The consultant said my ileum was enlarged on mri scan and the stool test shows elevated calprotectin. Previously I had biopsies from my colon which were suspected to be a type of microscopic colitis and I also have functional gut disorder and a history of severe endometriosis which I had a 4 hour surgery to remove the endometriosis from my bowel and rectum in 2005.

    It can be tricky to diagnose crohn's and sometimes takes a while.

    Do you have anyone that can be a backup or support incase you get any further episodes like this? I joined crohn's and colitis uk they have a lot of information and advice too. Do you have any family nearby who could help with looking after your children while you get the colonoscopy done? I had steroids which helped a lot and now have them at home incase of flareups. There is a lot of support and medication which can help now so hang on in there. I take a good probiotic called Quest mega 8 biotix its expensive but helps a lot. I've also removed a lot of wheat and dairy from my diet. I take regular buscopan Mebeverine and painkillers as needed. Please avoid anti infammatory drugs such as aspirin ibuprofen as they are known to aggravate inflammation in the gut. I also cannot any longer take any oral iron pills or antibiotics as they start my flareups off.

    I hope I've helped a bit and hope you get some answers soon to the cause of your symptoms.

    Please post any questions people here are very supportive,

    Take care and let us know how you are...

    X

    • AmberAleen
      AmberAleen rose45257

      Posted

      Thank you so much for such a warm response. 

      Sharing your story helps me majorly. Knowing someone had a similar experience and the diagnoses you got along with the steps taken at the hospital reassures me that this is serious. 

      I've had SO MANY people in my family as well as friends look at me as if I'm being a drama queen. 

      My mother on the other hand was upset that I canceled as she has watched me from a teenager buckle to the floor with stomach pains, refusing to go to the doctor. 

      I can't take NSAIDs. I did go to the doctor and have a scope done after five years of puking everything I ate.... even just plain bread. 

      I had gastritis, duoenditis, GERD, and a hiatal hernia. 

      I take protonics daily. 

      They wanted to do another scope bc I started getting sick again but I refused bc it aggravated the hernia and my throat wars so swollen for months after that I had to sleep with my head up, propped sitting up bc I literally couldn't breathe. It was horrible. 

      And the only person that could watch my children called and said they couldn't. So I had no choice but to cancel the apt anyhow. But I was secretly relieved bc I couldn't afford to miss anyhow. 

      I am going to reschedule the apt very soon thanks to your response as well as the others. ?? 

      Thank you thank you. 

  • Tay63
    Tay63 AmberAleen

    Posted

    I have crohns. You cancelled the colonoscopy??? That was rather unwise to say the least as it's mainly via a colonoscopy crohns can be diagnosed. So until you have one - who knows .

    • AmberAleen
      AmberAleen Tay63

      Posted

      That's why I scheduled the apt. Bc that is the only way to tell. I'm going to reschedule it very soon. 

  • maureen15717
    maureen15717 AmberAleen

    Posted

    Hi,  Sorry to hear you are having so many problems but you must have that colonoscopy as this is the only way the medical team will find out what is happening with you.  Whilst I appreciate you cannot have time off work and that you are a single mum with 2 children but just think if you do not get the right help and medical assistance what will happen to your 2 children if you get worse and your condition gets to the point of non treatable !!.  Sorry to be so blunt but this could be the outcome if you do not get the medical help.  A Colonoscopy is nowhere as bad as what you have just been through and sitting worrying about the problem is not helping the situation.  Trust me, my late mother and father suffered from Ulcerative colitis and my young brother and myself now suffer the same. I am also convinced that my Nan also suffered with the same problem but in her day the medical information and checks were not around.  You must go and seek help, NO PUTTING OFF.  As I say sorry to be so blunt and to the point, think of your 2 children and get something done.   I wish you all the luck and things do get better once you are diagnosed.
    • AmberAleen
      AmberAleen maureen15717

      Posted

      Hi. Thank u for your response. No,  don't know what will happen. I didn't think you could die from it. Ik that may seem a bit dense of me but every time I googled that, it never really gave a direct answer. What can happen? 

  • maureen15717
    maureen15717 AmberAleen

    Posted

    Hi again,  My mother and father didn't actually die from Colitus but if you do not get on the right medication and get it under control the only way you will go is down.  Once you get a diagnoses you can then get the right medication. However to get the right medication may take a while because what works for one person may not work for someone else but once you get sorted you are on the way to leading a normal life not a life like you are living now. There is life after all this.  There is no two people alike with all this illness, it affects people so differently as my brother and I have found out.  He is on different medication to me and my parents were on different medication to me and my brother.  This is why information is very sketchy.  Also I am believe that stress in your life also plays an important part with this illness.  Again, my consultant does not think this but my Brother's consultant does, so even with this nobody agrees.  I know that if I have any stress in my life I have a reaction.  As I said Good luck and I hope you can get answers sooner rather than later.  Do let us know how you get on. x

    • AmberAleen
      AmberAleen maureen15717

      Posted

      Thank you so very much. 

      I believe that stress can indeed trigger stomach issues or flare ups. I also have bipolar 1 disorder. When I am stressed with high anxiety I always get sick. 

      I will let you ladies know how everything turns out as far as diagnosis. ❤️

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