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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Undiagnosed: Urgent cry for advice!


04-07-2016, 07:31 PM   #1
EmmaBema
 
Join Date: Apr 2016
Undiagnosed: Urgent cry for advice!

Okay so I'm new to the site and I've been unsure about joining for a while but I've gotten to the stage where I really need to speak to people who will possibly understand what I'm going through, I've had a bit of an awful experience so far and it's very lengthy and frustrating so I apologise in advance if this is a really long post! I'd be so happy if anyone would take their time to read it and help me feel like someone is actually listening to me

I'm currently nearing the end of my first year at university, however for the past few months I've been suffering very badly with constant bloody diarreha, accompanied by extremely painful stomach cramps(that's what it started with), when I first went to the doctors it was very early after I started getting the symptoms and they told me it's possibly an infection or IBS. I was booked in for a blood test, asked to hand in stool samples and given buscopan. The issue was that I had to return back to London for university (my GP surgery is back home further up in the country) I was going to transfer but they was reluctant to let me as I would have to wait to be accepted into a closer GP and then reschedule the tests.

So I went back to London in February with tests booked back home the following month, apparently my case didn't seem urgent and they was okay to leave it that long which I was a bit unsure about, but me being nave thought 'if the doctors say it's okay it must be right??' Well I was very very wrong, the medication they gave me did absolutely nothing for my pain and the other symptoms . I started to research online as I was starting to develop new symptoms such as really bad joint pain, mainly in my back (often lower) and my arms and legs, the pain felt like it was getting worse, and I was constantly tired. I immediately rang my doctors back and said that I was feeling worse and they told me I need to give my body time to get used to the medication (it's only buscopan?!?!) and I need to bring in a stool sample ASAP. After explaining I was in London and had to attend classes as I had essays due they then told me just bring it in when I'm back home and 'not to panic'... So fast forward a few days, I was on the train back home (weeks early) trying to frantically find a working toilet and trying not to soil myself/ curl up into a ball on the train floor. I got home and everything went downhill from there, since being home my symptoms feel like they're constantly getting worse in one way or another. I went straight back to my doctors as soon as I got home and asked to see another doctor, straight away she was concerned to why the previous doctor let me leave the tests so long and booked me in for a blood test the next day, but I got to the test and sure enough something else went wrong, my blood wouldn't draw?!? It was extremely painful and I passed out. They then said its because I'm clearly sleep deprived (from waking up in pain every hour) and not eating enough, despite the fact I had stated to my doctor I have no appetite and I'm loosing weight drastically. They then went to book another appointment and the soonest they could do was THREE WEEKS LATER!! I was so angry, upset and annoyed. They then found another one, but that was still only two weeks on from the first appointment I had. They told me if anything gets worse then I should call back immediately, or if it's out of hours to call 111 (NHS service).

Sure enough the pain one night became unbearable, and the bloody diarreha was so awful. I was in so much pain which kept coming and going every hour or so I felt so awful, I thought I was going to pass out, felt like I was constantly going to vomit. So my parents rang 111 hoping they would suggest to take me to Hospital, after speaking to two different people on the phone they referred me to a 24hr doctor not a hospital. The doctor then continued to tell me that it's probably IBS and nothing worse due to my young age (18) completely ignoring me when I constantly asked about the blood, and extreme pain blaming it on possible 'piles'. I knew it wasn't just that but I was so exhausted and in pain I just wanted to go home, he prescribed me some more tablets to help with the 'functionality issue' and gave me codiene for the pain. Surprise surprise I had an awful reaction to codiene so I still had no sleep and the pain only got worse, luckily I started to feel a bit better by about 8:30 am and slept (untill I had to use the loo). I made it out of the house to pick up the medication he prescribed me to find out that he had prescribed me an anti-depressant!

To jump forward to try make this extremely long post a little shorter, I'll fast forward to now. So it's been around three months since I started getting these awful symptoms, and I can't really say much has improved. I didn't hear back from the doctors for a few weeks after my bloods were taken, so I called up and arranged an appointment with the same doctor who was slightly more helpful the last time and she said I should have been called as soon as they got them back, only one was slightly abnormal, surprise surprise it's my inflammation markers. She then became the most helpful doctor EVER and actually listened to me and take everything I was saying seriously, I had a rectal exam, blood pressure etc she then said she will refer me to the local hospital for further tests such as colonoscopy. I finally was happy that something was being done, but then I heard nothing from the doctors, nothing from the hospital. I was told it might take a few weeks for the hospital to book me in, but after two weeks nothing and I almost drove myself to A&E twice in frustration and pain. Finally I had enough, which brings me to these past few weeks.

I returned yet again to the shambles which is my doctors surgery and saw another doctor, who was completely confused to why I hadn't received an appointment with the hospital, to find that thy doctors never referred me because I hadn't brought in a stool sample (something I completely forgot about due to the chaos and stress which is now my life) she was so concerned about all the medications previous doctors had tried to give me, and how long I had been suffering without any clear action. Finally she referred me, and now I have to wait till the 16th of MAY for my hospital appointment with the gastroenterologist.

I'm just so confused, and so lonely. I have no social life anymore, which is hard because before all of this I was so independent, living away from home in London doing well at university. To now not knowing if I will be able to return next term, living in my bedroom only occasionally going out on the 'good days' for a few hours. Many of my friends haven't bothered with me as I always cancel plans because I feel so awful, despite trying to explain how I am I've found that a few are actually questioning if I'm ill. I feel so sorry for my parents and boyfriend who constantly have to put up with me but so happy that I have them standing by my side. After constant research and looking on this forum it feels like it's possible I could be facing IBD, even the last doctor I saw suggested that it seems like a very high possibility. I'm waiting for results from the stool sample but I was told I probably won't know until my hospital appointment. It says on the letter that I cannot bring my appointment forward as that is the earliest 'urgent' appointment they had available. So to end my extremely long winded post I just wanted to know if anyone out there has any advice for me dealing with stuff such as university, friends, family and even the hospital tests I will be facing. Also should I just go straight to hospital next time I feel extremely awful?

Thank you if you have managed to get through all of that and are still willing to help
04-07-2016, 10:09 PM   #2
ronroush7
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I am sorry for all that you have been through. It sounds like more than IBS to me. You came to a great place of support. I would say yes to going to hospital next time you feel awful. I hope you get better soon.
04-07-2016, 10:36 PM   #3
ShellK
 
Join Date: Mar 2016
Location: New South Wales, Australia
Sounds like you have been having a very rough time and grrrrr to dr who have been less than helpful for you.


04-08-2016, 05:14 PM   #4
Plittler
 
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Join Date: Jan 2016
Location: Bristol, United Kingdom
Hi, I'm so sorry you've been having such a rough time and you have my every sympathy, it's hard to deal with and especially when people around you don't understand what you are going through. I am 34 and just recently diagnosed but suffered with symptoms since I was around your age. Please don't think that is how long your diagnosis will take, my symptoms were not as extreme as yours until more recently.
My advice would be to be as open as you can with your friends and family, tell them how you are feeling, physically as well as emotionally. I understand it is an embarrassing topic especially when you are young but if your friends can't handle it and support you then maybe they are not worth it or maybe you might be surprised and they may be supportive. Once you start discussing it, it is surprising how many people actually struggle with bowel related issues but us 'British' just don't like talking about it.😀 As for your referral appointment, use this time to be proactive, write yourself a diary of all your symptoms, what foods you feel may trigger worse days (if any) and also how it is affecting your life e.g not been out today as worried about pooing myself lol😳 Good luck I hope you get the answers you need as it doesn't sound like just IBS but I'm not a doctor.x
04-12-2016, 01:41 AM   #5
Archeogirl
 
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Join Date: Dec 2015
Location: British Columbia

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I went through what you're going through last year, although the joint pain disabled me completely.

I first started having problems at the end of 2014 and went to a doctor in the south of the UK in January 2015 because I had all these new symptoms (mainly waking up and having to have a bowel movement right away and then having to go back to the loo after 5-30 minutes). The doctor didn't take me that seriously and told me to monitor my symptoms which I did until about July when I went on a road trip for 10 days and suddenly I was dashing off to the loo all the time. And I had this horrible stabbing pain that alerted me to go to the loo.

I returned from my road trip only to move to Hong Kong two days later and put off seeing a doctor for three weeks (because I was working 6 days a week at a new job). When I finally did see one she said I was emotionally and psychologically stressed out and said I have an irritable bowel and then gave me loperamide which was so helpful. So I took this for two months and then the joint pain randomly started as an attack in the night in my ankles and knees and within a month I could barely walk without holding onto something let alone get me to sit on a toilet. I was hanging off a tub or the door for support. It was truly awful. In addition I had nightly fevers that weren't fevers, chills, night sweats that kept waking me up and my pajama's and sheets would be soaked then I would start shivering from the cold sweat, I wasn't sleeping well because of this, I was losing weight drastically and not just weight but muscle mass was literally falling off me. I looked like a skeleton. By Halloween, the doctor was like maybe you have IBD and advised me to see a GI which I did. He advised for a colonoscopy but I didn't have any luck arranging one with a local hospital. After going in to hospital many times, finally I was "invited back" in January for blood tests. A month and a half wait!!

I knew that if I returned home to Canada, they could do all the blood tests in one day. So I did. I quit my job, flew back to Canada and went to a hospital. They were so concerned about me and I finally felt safe. I counted all my symptoms and I had 19 linked with inflammation and 5 possible linked ones. Many, many tests were done on me during the next two days and I had a chest xray and an ECG. They ruled out all of the tropical stuff first in case I had picked up Zika or something since I had been living in the UK, then in Hong Kong. Finally without a diagnosis, an internal health doctor prescribed me prednisone and the next day I could walk again! He also told me that the lump that developed out of the blue on my leg above my ankle was an erythema nodosum (an inflammatory lump). That disappeared over the course of the prednisone treatment. Within a two weeks I had a colonoscopy and unexpected surgery (for a cyst they coincidentally happened to find during their examinations). They diagnosed me with Crohn's based upon the colonoscopy and I did the prednisone for three months. I went from going to the loo 4-9 times a day to 1-2 and now I am on 5-ASA's and go 1-4 times a day. I feel 95% normal now and have my life back again.

When I finally quit my job at the end of November and was flown home to Canada in a wheelchair, I felt like such a failure at my life and also bewildered by what was happening to me. But while most people have no idea what I went through or think it wasn't that bad, your true friends will shine through and hang in there with you. That's what I've learned from all of this. I hope your experience with the NHS turns into a more positive one. Hang in there. You're not alone.
__________________
Diagnosis: Crohn's, Dec. 2015, at age 26
Meds for CD: Sulfasalazine since Aug. 2016, soon to start Entyvio (Aug. 2017)
Things I take: Probiotics, 1200 mg calcium/mag, 1500 mg vitamin d, occasional Tylenol and loperamide.
Things I was taking: IBD-AID diet, Vega, 50mg prednisone, hyoscine butylbromide (IBS diagnosis), ibuprofen for arthritis attacks, Celebrex for arthritis. 5-ASA....
Currently: Still not in remission but have 3-4 symptoms.
05-02-2016, 02:05 PM   #6
Newmaine
 
Join Date: May 2016
Location: Mahwah, New Jersey
I've been through a similar situation with doctors not taking me seriously and endless phone tag resulting in weeks of waiting for an appointment or test results or doctors going away on vacation. It's been a mess. All the whille My symptoms have gotten worse and worse every month. Finally I have a gastro on my side (even though I had to bug her for two weeks to order more tests) and hopefully we get some actual answers this week.

More than the symptoms I can relate to the lack of social life. None of my friends talk to me anymore because I can't go out drinking. I've sat home for nearly half a year doing literally nothing. Depression, anxiety, and mental anguish of isolation don't help and make me resent my friends for not understanding or not seeming to care much. It's not their fault but I feel abandoned. Then, if and when I see them, there always has to be an update conversation on latest results that makes me feel like I'm bugging them and that it's better to say nothing.

Don't even get me started on a romantic situation, I feel like a relationship is just no possible until I have this under wraps and can actually go out and meet people again.

It's tough to deal with this. Especially unanswered. I've tried to keep as positive as possible, but it is tough with a shrinking social and support system.

I can say that those who do care, have made it very clear that they do and they have been by my side throughout all of this. And those who don't, well maybe it's better off that way.

Anyways, you're not alone in your symptoms or the impact it has on your mental and social life. Just wanted to let you know others are going through the exact same. And although it doesn't seem it, we will get through this!
05-02-2016, 03:47 PM   #7
ronroush7
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Amen

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