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Crohn's Disease Forum » Your Story » Diagnosed with Crohn's today - mix of relief and worry?


05-07-2014, 02:29 PM   #1
Mrs_R
 
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Diagnosed with Crohn's today - mix of relief and worry?

Hi everyone. My name is Sarah and I wanted to share my story with you all so that hopefully others out there who may be going through the same fight I have been for the last 10 years feel a bit of hope

So, as my title suggests, I was told by my Gastro consultant today that I have Crohn's disease. She was able to tell this due to my ongoing symptoms I had told her about and through my MRI results which showed thickening and narrowing in my Terminal Ileum and Ileocecal Valve. I think I went into a bit of shock as the doctor relayed the information to me. For the last 10 years, I have been told by every medical professional I've had the misfortune of seeing that there is nothing wrong with me or it is all in my head or it is 'just' Irritable Bowel Syndrome. I went into the hospital today expecting to hear the very same things and felt sick with anxiety wondering where I would go from there. So to FINALLY be told that there is something physically wrong with my bowel took me by complete surprise. And even though I always knew myself there was something wrong and that all of my symptoms pointed to Crohn's, I had completely lost faith in the system ever diagnosing me and putting an end to the misery I have had to endure for so long.

My symptoms began when I was 16. I was completing my A-Level examinations at the time and was suddenly struck down with chronic diarrhoea and abdominal pain. I remember my GP calling me on the phone and advising that I was probably stressed and worried about my school exams and was just suffering with IBS. He advised me to take Loperamide to get me through my exams and to avoid eating too much fibre until my symptoms had settled. At the time, what he said seemed totally plausible and sensible and I had no reason to question him as this was the first time I had ever experienced these problems. But what was to follow for the next 10 years would ruin and restrict my life in so many ways I could never have anticipated it. I began to suffer these bouts of diarrhoea and abdominal pain more frequently but I managed to just about get by with everyday life by taking copious amounts of Immodium and rehydration drinks. I was in university trying to live life to the full and was just about able to keep my GI problems under wraps. However, things came to a head one night when I was staying at my (NEW) boyfriend's flat. I remember being woken in the middle of the night with the worst abdominal cramps I had ever experienced. I think I went into the toilet at around 1am and I was still in there when my now husband got up for work at around 7ish (thank goodness the diarrhoea was not an issue for him!!!) The following morning, I phoned my GP surgery as soon as it opened and was advised to go to A&E due to the severity of my pain and the risk of dehydration. I will never forget the nurse who triaged me when I arrived and just how cruel she was. I was scared, exhausted and completely alone and she made me feel like a hypochondriac that should not be wasting the hospital's time. I was just about to walk out in tears when another nurse alerted her that my temperature was through the roof and I should be admitted immediately. After various tests that seemed to take hours, my appendix and an ectopic pregnancy being ruled out, I was given the all clear to go home as they could not find any obvious course. They informed me that I would however be referred for a Flexible Sigmoidoscopy examination to check for Colitis due to my family history of IBD.

I will fast forward here as I am becoming aware of what an essay this post is becoming. My Flexi Sigmoidoscopy turned out to be the first of many tests and examinations I was put through that would all come back clear over the next 10 years. I had a barium x-ray, a Gastroscopy (the most dreadful one of all), an ultrasound, numerous blood and stool sample tests, and finally a colonoscopy in October last year. Every single test showed nothing and I then spent months being told by my GP that my symptoms were all psychological and I simply needed to meditate to put a stop to them. How wonderful if that would have worked! I have become progressively worse over the years with my main symptoms these days being diarrhoea, severe abdominal pain, nausea/vomiting, night sweats, nocturnal diarrhoea, weight loss, extreme fatigue, bloating, loss of appetite, muscle weakness, joint pain in my elbows, constant localised pain in my lower right abdomen and generally feeling really really unwell. My flare ups have become more frequent and severe by nature and I was at my GP surgery so often I was considering setting up camp there.

After losing my 2nd job to this horrible illness and being in a complete state of despair, my GP made the first sensible decision in years and sent me to see a Specialist Community GI doctor. It took him about all of 10 mins to conclude I absolutely did not have Irritable Bowel Syndrome but what he suspected to be inflammation in the small bowel. And today after an MRI and an appointment with a GI Consultant, this was confirmed.

So I'm sat at my computer now drinking a cup of tea trying to work out exactly how I feel. I think I have been through every emotion since this morning - shock, relief, worry, anger, fear, smug. And then I realise how mad that sounds - relief that I have a lifelong illness that can never be cured. But then I think about the last 10 years and what I have been through and I don't blame myself for feeling that. I have lost count of how many times I have cried or felt like giving up, how many times I have wanted to slap people across the face when they say something like "oh, so you just have a bad stomach now and again?" I have had the most frustrating and exhausting battle for so long and now I feel like it is finally over and I can focus on getting better. I know there is still a long road ahead and I have already been told I have to have another colonoscopy to discover the extent of the damage caused by the inflammation. I am possibly facing surgery to resect my bowel and I will probably be on some horrid medication for the rest of my life but if these things give me my quality of life back, then bring them on!

I'm sorry this is SUCH a long post but all I really want to say is I only got here through trusting my instincts, fighting for what I knew all along and not being afraid to demand what I am entitled to from the medical professionals treating me. It's a hard fight and you may get palmed off more times than you can even remember, but don't ever stop fighting to get your life back. Crohn's Disease isn't a life sentence and for the first time in 10 years, I actually feel hopeful.

I look forward to getting to know you all and hearing all of your experiences

Sarah x
05-07-2014, 03:02 PM   #2
Ali29
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Welcome Mrs R - I totally understand your feelings as I also felt the same way. After joining this Forum - it has changed my thoughts. There is no much information, people to talk to, learn and get advice. I was so scared to take any of these meds but prior to my diagnosis - I too lived on imodium/lomotil and nausea meds at night since I couldn't work while taking the Phenergan. I was so afraid of the meds but as I have learned, I don't want this to continue to get worse. On 5/15, I will hopefully get more info as I just had another colonoscopy/Upper GI - doc took lots of biopsies. I have been told the first year after diagnosis is the hardest - managing the meds, which ones, etc. My Crohn's is still not under control so I may be graduating to more aggressive meds. I want to live, I want my life back, so I have chosen to take a positive attitude towards my illness and not let it control my life as it is now.

Good luck with your tests - hopefully your case will be easily managed!
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Diagnosises - Mast Cell Activation Disorder, IBD Small Intestine-duodenum-villi blunted, Bile Acid/Fat Malabsorption, Chronic nausea-vomiting/pain, esophageal dismotility, mucosal edema, acid hypersecretion, Lymphocytic Colitis, Ocular Migraines, gallbladder removed

Current Meds: H1 H2 Anti Histamines, PPI, Enteragam, Lomotil, Phenergan, Percoset

Meds that did not work: Pentasa, Lialda, Zenpep, Entocort EC, Carafate, Elavil, Lotronex, Desipramine, Questran/Welchol severe bloating/pain.
05-07-2014, 03:46 PM   #3
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Welcome to the forum Mrs_R. I can totally relate to all of your symptoms! And yet I am still in the process of being diagnosed. I've had a clean blood tests, stool tests, barium x-ray, colonoscopy. But the symptoms are absolutely terrible! I agree when you know its just more than IBS. I will defiantly be getting an MRI soon. Your story gives me some hope that I too will find answers for these symptoms. I hope now that you have a proper diagnosis you can find a treatment plan that works for you
05-07-2014, 03:59 PM   #4
PVail
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Sarah , welcome to the forum and Im just really pleased for you to get a diagnosis. I know your story quite well and it took me almost years for the doc to even take me seriously.
At least now you can get more info and get a better understanding of what the future holds.
Even after I was diagnosed my own doctor didnt believe it and said it was diet and IBS. ive since moved to another doctor and currently going through a bad flare up. Except this time im getting monitored and regular bloods done ,which never happened before. I do feel more calm these days even when im not feeling good.
I feel i have accepted it and deal with it much better. The drugs well they are a necessary evil and we are bound by them until something better comes along.
I hope you get some better treatment now and just enjoy every day you can .

Peter
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DX March 2012 IBD - Inflammation of the Terminal Ileum with inflammed appendix
Asacol 800mg 4 x day
Amitriptyline 50mg
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05-08-2014, 12:46 PM   #5
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Thank you for all of your replies, it's so nice to know that there are people out there who understand just how challenging this dreadful illness can be! As the news begin to sinks in, I find myself really starting to worry about the treatment for Crohn's and the horrible side effects I may experience from the meds. I know that they will enable me to get better and take control of my life but I have had some really horrible experiences in the past from certain medications. I understand that steroids are used to treat Crohn's and all I seem to read about is all the horrible things they do to your body and mind I currently feel like I have a million thoughts and questions running through my head and I really don't know how to feel. But we all must keep battling and fighting against this cruel disease.

Brenden - I really do wish you luck with your diagnosis. I know how frustrating it can be knowing there is something more going on in your body but not having an answer. Just keep on at those doctors. I phoned my GP all the time and eventually she must have got sick of me and referred me on! I felt like a nuisance but the alternative would have been so much worse.

Ali29 - I am sorry to hear that your illness still isn't under control fully. I really hope your new meds do the trick and alleviate your symptoms. I really admire your attitude and ability to remain positive and hope it is something I can do through my journey.

PVail - I really do sympathise with your story and the way you were treated by your previous Doctor. Something needs to change when it comes to IBD and the attitudes towards it. I am glad your new Doctor seems to be much more proactive but I am sorry to hear you are currently suffering a bad flare up. I am dreading my next one as I know it is always around the corner waiting to sneak up on me. I still have a little wait before I get appropriate treatment but it cannot come soon enough.

I wish you all well.

Sarah x
05-08-2014, 12:59 PM   #6
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Welcome to the forum
I was diagnosed with UC in march and i am still going through the mixed emotions. You will get the best support and advice here. It took me over 4years to convince my doctor to do something. I was told by specialists that it was all in my head and also 'woman sometimes just get pains and find the best pain killers that suit you'.
Just try to keep positive (i know its hard) and i wish you all the best.
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Diagnosis: Ulcerative Colitis March 14
Current medication: Waiting on new medication & Omeprazole
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Currently in a flare
05-08-2014, 01:08 PM   #7
Mrs_R
 
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Hi Ness1993 Thank you for your reply. It's really reassuring to know that I'm not the only one going through a million different emotions! Oh being told it is all in your head is the most upsetting and insulting thing isn't it! My GP was adamant it was all psychological and I just needed to 'stop worrying'!!!! If only that was the magical cure! I am glad you finally managed to get a diagnosis, even if it did take years! It does bring an overwhelming sense of relief but also opens up a world of questions and worries. But I am so happy to be part of this forum; I think the support is going to be invaluable!

Take care, Sarah x
05-08-2014, 02:36 PM   #8
Daisy123
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Hi Sarah

I was so lucky to be diagnosed almost immediately when I got ill during my university finals. I have heard many horror stories about people being misdiagnosed with IBS or psychological problems. I am so sorry. But you are diagnosed and now you can be treated and get your life back. All drugs have risks, but the risks outweigh the risks of the disease. I trust my specialists and am lucky that I haven't had many side effects with the exception of steroids which make me totally manic. The drugs are so much better than when I was first diagnosed, and there are promising new ones on the horizon. You will get back to 'normal'. My only advice is to make sure you are seeing a top specialist. I go to the top hospital in the UK.
05-09-2014, 04:39 AM   #9
Mrs_R
 
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Hi Daisy123, thank you for your reply. You certainly are one of the lucky ones to be diagnosed so quickly. Unfortunately, I still feel we have a long way to go when it comes to awareness of IBD and changing people's attitude. My husband calls it 'The Invisible Illness' and I do wonder what people would say if our symptoms suddenly manifested on the outside of our bodies. I am trying not to read too much into the drugs as I think I am convincing myself they are going to be awful and I may be lucky and not ever suffer any side effects. But even if I do, I am sure they are the lesser of two evils as you say. When you say you go to the top hospital, do you travel to make sure you are seen by the best specialists? I would be interested in finding out where it is you go if you wouldn't mind sharing that in a private message or something

Thank you for all of your advice and support.

Sarah x
05-09-2014, 05:47 AM   #10
Whit
 
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I had the very same experiences including the sigmoidoscopy and the IBS diagnosis. I was told to add fiber supplements to my diet and avoid dairy products. At age 68 I had a partial blockage in the last 4 inches of my small intestine and Crohn's was diagnosed via a CT scan.
Even now after a second blockage and on methotrexate to help reduce the mucosal imflammation in the ileum I am still in shock and denial. It will take time to get used to having a chronic disease, at least for me and it has taken time for me to learn to manage my health care from diet to supplements to interfacing with doctors.
Good luck
Whit
05-09-2014, 06:16 AM   #11
chuckmya
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It's amazing how medical professionals are so quick to say, it's anxiety and IBS! I was originally diagnosed with crohns in 1999 by my surgeon. I was sent to another city to see a supposed crohns GI doc who took the diagnosis away! @ the time I was happy with that opinion as I was obv in denial! But what I didn't realize until this month was that there was convincing evidence on operative reports, pathology report, and discharge report! I was lead to believe was that it was questionable crohns!!???? Wth is that???? So I requested all my records and was thoroughly shocked when I read those above mentioned reports! So I once more pursued a 5th opinion! Lol and based on those 1999 reports I am finally diagnosed once and for all! So I'm looking forward to healing and getting on with my life! The moral of this story is be your own advocate and get your test results so you are informed as to exactly what's going on!!!
05-09-2014, 06:33 AM   #12
RosannaKate
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Hi! I know just how you feel! But wow 10 years is such a long time! I am currently in my second year and I for one do not understand it! I'm at the point where if someone would just diagnose me I would cry with happiness and finding something that could be treated. I take codeine and Imodium every day and in horrendous amounts of pain even with the codeine. It's a struggle but I'm glad you never gave up on finding that diagnosis as it is missed so often! I wish you all the best with your treatment plan and hopefully it will get you into remission and you'll feel better! xx
05-09-2014, 06:45 AM   #13
Daisy123
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RosannaKate, so sorry for you struggle. Watch the Imodium, I was taking it by the handfuls at one point and now I can't take it. You also need to be taking paracetamol as well as codeine for the pain. I take eight paracetamol, codeine and/or tramadol and oramorph when needed. But at least I know what the problem is and hoping for surgery to try and resolve the issue.
05-10-2014, 04:55 PM   #14
chuckmya
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One thing that I've learned thru all of this is to keep pushing for answers! You need to be pushy and be your own advocate because no one else will do it for you!!! Keep your head up and keep pushing for a diagnosis!!!
05-11-2014, 01:03 PM   #15
Mrs_R
 
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I couldn't agree more Chuckmya. We know our own body better than any Doctor or Specialist out there. I have known for all these years that something was physically wrong with me and that's why I never gave up. I could never accept the default diagnosis of IBS, I knew there was something more. At times I wanted to give up, I felt like I had no fight left in me but on Wednesday it finally felt like it had all been worth it. To all of you who have replied and are still fighting for a diagnosis, I really hope you get some answers as soon as possible. It hasn't neccessarily brought me comfort but at least I know WHY my body acts the way it does now and that means I can look forward to a future where it is controlled as much as possible.

Sarah x
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