5 Months on...

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Hello again.

I feel like I might as well update my info and I feel a bit of a rant coming on too. It's been 5 months since things started to go wrong for me and I don't seem to be getting better.

The medicine I'm currently on is as follows:

Prednisolone 5mg (currently on 5 tablets a day tapering down by 1 every week)

Omeprazole 40mg (2 a day)

Mezavant XL 1200mg (4 a day)

Iron Supplement tablet (2 a day)

Calcium supplement (2 a day)

Basically over the last 5 months I have been in hospital twice, had the worst Christmas ever, gone to my GP's office about 12 times (rarely seen the same doctor twice over there) been given a whole load of conflicting information by every doctor who has seen to me and also the medication I've been given has done hardly anything for me.

My Ulcerative Colitis has eased after almost 4 months. I haven't passed blood with my stools now for about 3 weeks and I have been experiencing far less abdominal cramping. Also I've not been tired and weak everyday like I was back in November. However I am still passing loose stools and going on average 4-6 times a day.

In 2 weeks I'm going for a Colonoscopy and a Gastroscopy which I am highly dreading. But before that I am seeing a Gastro Specialist at my local hospital this Tuesday. I have no idea what he's going to say to me or even really what the point of the session is, but Lord knows I will have a thing or 2 to say to him. I have developed a rather high level of resentment towards our dear healhtcare services. I really do appreciate that the NHS is free, however to be honest I feel like I have been left to suffer for months.

I'm really starting to worry about what's wrong with me and I'm doubting my doctor's abilities to treat me. I have been told a range of different things as to what is wrong with me over the last 5 months. I've not once been given a straight answer nor been given the same answer twice. For example I still don't know whether I have this damn H.Pylori infection which would explain my chronic stomach aches that I've had everyday now for almost 5 months. I was told in the beginning it was Gastritis after NO tests were done on me. Then I was told it COULD be an ulcer, then I was told no it wasn't. Then later I had a bit of a panic to my doctor after suffering for a couple weeks.

I started sprouting fears of stomach cancer, pancreatic cancer, gallbladder problems, atrophic gastritis and crohn's disease. After this little episode I displayed my doctor actually had the nerve to tell me that it was ALL down to my anxiety, and he tried prescribing me antidepressants. I feel like I was ignored and all my symptoms were pushed away to the side and have been dismissed.

The last time I saw a doctor which was about 3 weeks ago I pushed as to why my stomach has hurt for months and he told me that it was my ulcerative colitis. I'm sorry but that's bullsh*t. Ulcerative Colitis doesn't give people chronic stomach aches. He told me that once my Colitis calms down then my stomach will feel better too. He might as well have told me to just go home and be happy. He said that the steroid treatment I'm on can give me stomach aches, which is just such bullsh*t. Why can't I be given something to relieve and heal my stomach aches..????

One doctor at hospital told me that I've developed an ulcer, then the next doctor told me that that was wrong. I don't know what to think anymore. The infamous H.Pylori bacteria has been mentioned a number of times to me, but not once has any doctor told me if I have it or not, which would nicely clear up the reason as to why my stomach has been hurting. If I DO have it I will be pissed off so much that its been left to fester for months inside me.

I'm concerned that because I'm 22 the doctor's haven't taken my symptoms seriously and they've missed something or things have gotten worse as a result. I hate my life right now. I have been basically house ridden for 5 months apart from being in hospital of course.

What should I do..? Anyone...? What should I say to this specialist that I'm seeing on Tuesday..? Does anyone have any idea what the Hell is wrong with me..? Please help me someone I can't take much longer of this, I am so depressed from it all.

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  • Posted

    Hi Andy

    I totally understand how you feel and you need some straight answers. You are on so many tablets there that it is stupid for them to just let it ride!!

    Can I start by saying that the NHS is not a free service, we all pay into it with national insurance contributions, so don't feel bad about using it.

    As for seeing different doctors, find a doctor you can stick too as you will get one set of answers, not that that is a help! My doctor has turned my healthcare over to me! I'm between a rock and a hard place and fear, like you, cancer etc.

    Having said that , or written that, a lot can be down to anxiety, although touting anti depressants which have an adverse effect on the body is not the answer.

    When you go to see your consultant, take a list of questions on a sheet of paper and start asking them slowly one by one.

    Start with your age and that you don't feel you are taken seriously because of it.

    Say that you have seen a multitude of doctors and been given conflicting information.

    Tell him that you are not depressed but, understandably, you are getting anxious about your health as it is impacting on your working and daily life in a very negative way.

    He might have heard all this before but it is good to show that you are organised about your mental and physical well being.

    After this list your physical complaints.

    Leading up to this meeting, try, and it know it is hard, but try to remain calm, tell yourself that answers are on the way.

    Take time out in each day to learn how to stay calm, deep breathing exercises are good. There are yoga breathing exercises which involve closing one nostril and then the other which I thought were a load of bunkum but surprisingly, they work. Look up the proper technique though.

    Please come back and let us know how you get on.

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  • Posted

    Hi Andy

    I am sorry for your worries..it has gone on a long time....mine have been for three months and it takes time sadly.

    I have found you must ask the doctor for tests...I asked for a H pylori test and the test was back in four days..I have had a great GP so I cant knock that but I have pushed for referrals and referrals....but maybe at your your age I might have not done so..can somebody come with you to the next appointment?

    the endoscopy and others tests will be a great reassurance for you....it is not so bad and anyway it has to be done....e..I really resent people writing on line that it was so awful and putting people off...it is a life saver.....and very important to eliminate growths.

    Also try and keep a diary of what makes you feel worse....by the way the omeprazole helps cure ulcers and h pylori so that is something..

    Have you lost much weight? All this info re your stomach etc be written down so you remember to say it to the specialist, they are inclined to take you more seriously.

    Good luck............

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  • Posted

    Hi Andy!

    So sorry to read that you feel like you are no further forward, I know how frustrating it is (as you know from previous discussions).

    All I can say from my experience don't loose hope, focus on the next tests you are going to have (endoscopy and colonoscopy as they will be able to tell you if /what is wrong if there is something wrong.

    That's all I did, I am shocked you haven't been tested for H Pylori as that was the first test I was tested for at my doctors (when she said I had gastritis - which I didn't!) my H Pylori was negative, took about 4/5 working days to come back - so if I was you and you want to be tested for it, go to your doctor and say this, you just have to give them a toilet sample.. job done!

    The problem is you may have something causing the stomach aches and what is adding to it is probably the anxiety and worry of it all ( I know it did me!) its horrible and catch 22 situation I know.

    I had the same problems as you constant stomach aches which flared up bad weekly, upset stomach every day etc etc, I went private (still felt like it took forever to get tested - however quicker than you by the sounds of it) I firstly had an ultrasound - clear, I then had endoscopy (don't worry I have the exact fears you do and trust me its fine, and its all over and done with in like 8 minutes!!! when you think of the pain you suffer every day for 5 months 8 minutes is nothing! - they do it day in day out pls don't stress about this) - all clear! then I had blood tests testing me for pretty much everything - all clear then colonoscopy taking 4 biopsys also - ALL CLEAR!

    On my last visit to my stomach consultant, he said the next step would be a CT scan but he doesn't like doing it unless he has to and he is quite confident that I am ok! (I have total faith in him he really knows what he is talking about) he said for me to go away and see how I get on.... keep a food diary as he thnks its food related... he recommended for me to take "good bacteria capsules" from Holland and barrat which im now on (called Acidophilus Plus)

    I have not been taking the about tablets for 2 1/2 weeks, have they cured me, no not completely HOWEVER I really think they are helping my stomach, since taking them I haven't had the flare ups (where my stomach swells up) and day to day life doesn't revolve around my stomach! don't get me wrong it hurts sometimes BUT NOT 24 HOURS A DAY EVERY DAY! it hurts today for example but I expected it too as I had thai last night..

    I was getting upset stomach 2/3 times a day daily from October until I started taking tablets too!

    I would definitely recommend - firstly get your endoscopy and colonoscopy done and take it from there

    Good Luck - keep fighting

    Jen

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  • Posted

    I don't know if he meant with everyone or just for me, I think he meant he didn't want to do it with me as he had ran so many tests which all come back clear and he was happy that it wasn't anything "serious" I think CT scans can affect your fertility ? So he didn't want to do it if he didn't' had to?

    He said to go back if my stomach gets worse, and then the next step would be a scan, but I think he felt he had pocked and prodded me enough over the last 4 months and felt I needed time out and see how my stomach was then.

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  • Posted

    It was private so I doubt it, NHS I would of probably thought that was why! lol
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  • Posted

    Hey guys, thanks for the replies & everything.

    I been to see the Gastro Specialist the other day & while I don't feel any better per say, I got at least a little piece of mind from the meeting. I got to ask all my questions I wanted to ask & I got realistic & honest answers. I was told to taper myself off my Omeprazole, the Doc said "If you've been taking it for 2 months now & your still having pains then its probably not doing anything for you expect lowering your stomach acid which can be counter productive."

    She put me on this completely random medicine which is usually given as an antidepressant its called Nortriptyline...? I'd never heard of it but apparently it can help with nerve pains(?) I don't know, I've been on them for about 5 days now & I honestly can't tell if anythings happening, oh well.

    I was once again reassured that I do not have stomach cancer & the Doc said it is very unlikely that I have stomach ulcers, she said that it could be a "Functional Disorder", I remember her saying those words but after that I was bombarded with Science.

    Basically I got told that the Colonoscopy & Endoscopy that I'm due for this Friday will shine light on whatever is going on in there. So I'm sort of riding on that as best I can, I'm not looking forward to them at all, but I have nothing to lose at this point.

    The Doc said that my GP way back in October jumped the gun by telling me I had Gastritis which was good to hear, she in fact was edging towards saying that she doesn't think that I had Gastritis. And yet again I asked if I had been tested for H. Pylori & she said that will be looked into when I have my scopes. I had to suppress an outburst of anger when she said that to me, I would have thought that the info would have been somewhere in the huge file with my name on it that she had on her desk. But whatever I will mention it on friday morning before my endoscopy like, "Make sure you take a nice big sodding biopsy & get it tested for H. Pylori will u!"

    Anyway the Doc said that in her expert opinion it doesn't sound like I have Crohn's Disease like I'd feared, as in the almost 5 years since I first ever got the symptoms I have never experienced this phantom stomach ache before & logically I would have done so before now, so it must be something else. I guess that makes sense, I'm just going to have to trust the Doc on that one, but again, the Scopes will confirm if it IS Crohn's or not.

    My Bowel Movements have consistently stayed watery and loose, but I haven't seen blood for about 4 weeks now which is good, I'm almost done with these damned steroids, only 3 weeks left. The doc was a little concerned when I told her that I was still having a bit of urgency about myself when I need to go and that my poo is still loose. She said that I may have to advance to the next stage of treatment for my Ulcerative Colitis, which I believe is Immunosuppresants..(?) I don't know anything about them, except that if you don't respond to steroids then you go to them.

    One thing that I have discovered on my own that I will be definately mentioning to a doctor is the possibility of Pancreatitis. I have read in one of my booklets on Inflammatory Bowel Disease that in some cases, because IBD is an auto immune disease, sometimes your bodies defences attack healthy bits for no reason.

    And the symptoms of Pancreatitis fit what I've gone through these last few months; a dull pain or ache in the middle of the abdomen, sometimes worsened by eating a meal and nausea. It can also make your stools really smelly and watery. The biggest risk factor for Pancreatitis is excessive drinking, which I don't do, but it can be brought on by my Colitis, it can even be stimulated into action through the use of Corticosteroids, which is awesome (sarcasm) I've been on those now for almost 3 months. That would all sort of fit because this has been my worst ever flare up of Colitis so it could have triggered it maybe....???

    I could just be fishing in the dark here for an answer to my ongoing pain, but I feel like I could have made an actual discovery here that the Doctors could have just missed completely. Having Pancreatitis would be another huge bummer to my life, another chronic condition hooray!, But it would be nice to put a name to a face if you get me and I know that there are things that can be done for it.

    What do you guys think....?

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  • Posted

    Hi Andy

    I think you mean Amitryptiline which in a small dose is used to help nerve pain but in a larger dose it is an antidepressant........I am no doctor but it doesn't sound like pancreatis....you would be yellow by now...it is one of the symptoms of pancreatic disease. Trouble is so ,many of all our symptoms have so many possibilities...I think your tests will help you feel a little better. Mine did although there is still no diagnosis so tests go on.....basically I have hardly been able to eat for three months and have pain below ribs and mid stomach...Also have now low stomach pains....which is new. Actually since I went in gluten free diet.....

    Anyway good luck for Friday....let us know

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  • Posted

    Hi Andy.

    Could be gallbladder diseaseā€¦.the GB is very close to the pancreas. is your urine very dark?

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  • Posted

    Yeh the more I read about Pancreatitis the more it sounded horrible, I really hope I don't have it. I've been having passing yellow stools the last couple of weeks... which apparently is coz food is going through my system too fast. But it can indicate liver problems, pancreas problems, gallbladder problems... *sigh* its just one thing after another

    Btw @designergirl my urine is normal

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  • Posted

    well it could be bile salt malabsorption which can be treated with medication to slow the transit through the colon.

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  • Posted

    I'm starting to panic a little.... I started reading about pancreatic cancer, the symptoms are all familiar to me sad pain in the upper abdomen, yellow loose stools, slight weight loss, can be triggered by an autoimmune disease (My Ulcerative Colitis) oh dear.... panicking!
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  • Posted

    Andy the worst thing you can do is self diagnose!

    There are many reasons why you have got these symptoms, please go to your doctor!

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