Thinking of giving up trying to get a diagnosis...

[x0lou0x]

I have been to the doctors again today as i have been having the same symptoms I've been having for almost a year (some for over a year); diarrhea, abdominal pain, mucus, bleeding, skin disorders, dizziness, headaches, not being able to function as i'm so tired, shakiness, loss of vision, the list goes on.
I keep being told the same thing over and over again either that its IBS or that it sounds like IBD and i need further analysis.
My consultant at the hospital ended my referral after my colonoscopy results showed anitibodies reacting to something but my biopsies showed "nothing sinister". I have been referred to another hospital but I am sick of sounding like a hypochondriac. i have never been the sort of person to go to the docs i've never even been on antibiotics... and now I feel like i'm constantly going and that no one is taking me seriously. If the new hospital say that its IBS too I'm going to be so disheartened as I really don't think I would be bleeding with IBS.
Another thing that gets me is that they have never done an occult fecal blood test or white blood cell count, to me that is really strange? surely they should have checked to see if there is a sign of inflammation and internal bleeding?
anyway there's my rant... I've been having a bad week and I have to go back to Uni tomorrow and as I am in final year I'm terrified that the fatigue is going to affect my work...
any advice on what to say to my new consultant would be greatly appreciated!

 

[UnXmas]

I understand how you're feeling. It took years for me to get diagnosed, and also years to get another, much rarer condition diagnosed.

It's terrible how we're made to feel like hypochondriacs when our symptoms are genuine, but doctors are only interested in objective test results.

I don't think you should completely give up on getting a diagnosis. But perhaps it might be useful to not hope for it anytime soon. Carry on asking for tests, seeing doctors, reporting symptoms, but don't let it take up too much of your thoughts and energy. It's hard when you just want to know what's wrong and you feel awful, but sometimes it's better to accept that it's going to take a while to get sorted and don't let the doctors get to you, especially when you need to focus on uni and other things.

How sympathetic is you university being? Are you getting extra time on papers? When I was at uni, I wasn't diagnosed but my uni's disability centre was always willing to do what they could to help.

The only type of bleeding you would get with IBS, as far as I know, is if you had hemmorhoids or a tear in the rectum or something - which would probably be bright red blood (superficial blood) and not dark. IBS is not a nice diagnosis to have because so many doctors see it as the equivalent to "nothing wrong" or "just stress," but there are doctors who are willing to work with IBS patients properly and try to control its symptoms.

I would just make sure you tell the next consultant all your symptoms. Especially any that point to it being something other than IBS since that's what you feel. Also any that are new or worsening. It's usually not helpful, in my experience, to tell consultants what you think is wrong or what tests you think you need - they have to think they are the ones making the decisions. Be prepared for a disappointing result, but remember this is not the last consultant you will see. I've waited over a decade for a diagnosis for my other condition and got it when I least expected it - I'd literally given up, when I found myself referred to an international expert who knew what was wrong.

 

[xX_LittleMissValentine_Xx]

Unxmas has given you some good advice there.
I just wanted to back it up by saying really don't give up! I know it can be so hard and so disheartening trying to get a diagnosis but you can't go on the way you are.
As for the uni part. Have you spoken to your tutors about what has been going on?
In my final year of uni I was admitted to hospital with emergency surgery and I was sure after that I would not be able to do my work and graduate. I managed to get mitigating circumstances which meant I could work with my tutors to do my assignments in my own time, and not have to stick to deadlines. I also had about an extra week to finish everything. It was still a lot of hard work. But not having deadlines was great because It meant even if I still aimed to hand my work in on the same day as everyone else, I didn't get penalised for not handing it in by 5pm. Or I could just leave it until the morning for a final read through and submit the next day.
Obviously this was easier for me to get as I had a clear diagnosis than it would be for you, but I think it would be worth looking into. If you could get a doctors letter, even just with your GP which says you are unwell at the moment and seeing specialists which is going to be causing you more stress and time and that your symptoms are causing fatigue, it might be enough.
Hope this helps.
Good luck with everything.

 

[poppets mum]

Feeling exactly the same way. Although it is my 10 year old daughter with the problems not me. She has had symptoms for 7 months now that have included daily stomach pain that often wakes her at night. A ton of other symptoms and a 14 lb weight loss. 2 years ago she had an abscess on small bowel that put her in hospital for two weeks. The pain is confined to this same area. All tests are normal. Biopsy showed inflammation in colon that is explained by prep. Just saw GI specialist who spent an hour telling me it is IBS and the best we can hope for is learning to manage pain mentally. Very unhappy right now.

 

[x0lou0x]

Thank you for all the advice, its nice to know that people understand. I haven't mentioned anything to my university as i didn't know who to tell or how to bring it up or how to explain whats wrong so I have just been dragging myself to lectures and all day field trips with no bathrooms... (nature is a bathroom according to my lecturers! the only way i can manage is not eating or drinking on those days)

Poppets mum, this IBS diagnosis really baffles me, surely if they know what it is and what it does they can offer more support than managing pain mentally? I really feel for you and your daughter, 14lb is a lot of weight to lose when your 10 and still growing. thinking of you both and hope that you see another doc that wants to get to the route of the problem!

 

[UnXmas]

Re uni: The best thing my uni did was allow me bathroom breaks during exams. I didn't end up needing extra time on papers, but it was nice to know I had that option too if I ever needed it. I got a letter from my GP (but it could be from any doctor, whoever knows you best or is most sympathetic) explaining that I needed breaks for a medical problem - she left out the embarrassing details!

I then made an appointment with one of the uni's disability advisors - every uni has them, and they deal with chronic illness (or acute illness during exam/paper time) as well as other disabilities, learning disabilities, etc. They should be able to guide you through the process if you do decide you want their help.

Oh, and when I lived in a hall of residence, the Disabled Student Allowance covered the diference in financial cost for my en-suite room, since I never would have managed without my own bathroom. I only had to pay the cost of a non-en-suite. There's sometimes help out there if you look for it.

Re. IBS: I think IBS is used whenever doctors don't know what's wrong, and many different conditions end up getting called IBS. Weight loss is not a part of it though!

 

[allieinwonder]

Nooooooo! Don't give up sweetie! I know this is sooooo hard....but if you just take it day by day, and when you come to these dead ends you change doctors, eventually you are going to get your diagnosis. Please do not give up! There are so many doctors out there that love to throw IBS around, but there are doctors out there that are going to listen to you and know this isn't right. Listen to your body...it is telling you something is wrong!!

In the 8 years I was undiagnosed, I gave up several times, especially when my symptoms were mild. I would avoid seeing my GI for years at a time. And it was a terrible mistake. I was finally diagnosed because I now am having heart issues, which means my disease is really bad right now....I wish I had listened more when I was a teenager, because then I could have prevented this. Yes, my doctors were a huge factor, but avoiding the doctors for years did not help at all.

We are all here for you! Hang in there!

 

[dannysmom]

I understand how you feel too! (but for my 15 yr old son) At times, I also sort of "take a break" from the constant pushing for testing, making appointments with new doctors, researching, etc. (Danny needs the break too.) It can definitely become so overwhelming and exhausting. We do always continue to follow up with regular GI appointments. If anything symptoms worsened, we'd call. Being undiagnosed is very hard to accept ... which is I guess is why we do not accept it and keep on tyring.
Good luck at university!!

 

[PVail]

Hi dannysmom. I so feel for you , ive been doin this now for three years with nothing positive . Its sooo frustrating to be constantly in pain and getting brushed off. I get embarrassed even phoning for an appointment but I know I cant give up . Three years ago I was healthy out going person about to embark on a new career in music ,now everything I do is governed by this undiagnosed mess. We become our own doctors and learn to put up with and accept poor answers for the medical professionals.
I for one will not stop asking questions or using this site to educate myself , which has proved invaluable I may say . Im keeping pushing as just treating symptoms is not good enough.
Its so important to look at what you have and try to build on the positive side of things. Every small step forward helps .
Peter

 

[x0lou0x]

thank you alieninwonder, i know something is wrong as i've gone from energetic to completely lethargic and not able to focus on anything! i think thats the worst thing when i feel as if i can't even string a sentence together, or have a conversation let alone write an essay! i know i need to keep seeing different doctors i'm just scared this one will brush me off as well and thats my two local hospitals gone. my dad said he would pay to take me private if the next one doesn't take me seriously but i can't expect him to do that!

 

[Niks]

I know exactly how you feel! We are having exactly the same with my daughter. She has been so sick and yet made to feel that as a lot of her results have come back fine, there is nothing wrong!

Keep going, my saving grace is the lovely people on this site and I can honestly say without their support I just wouldn't know which way to turn and what questions to ask!!

Thinking of you xx:hug:

 

[xX_LittleMissValentine_Xx]

Re uni: The best thing my uni did was allow me bathroom breaks during exams. I didn't end up needing extra time on papers, but it was nice to know I had that option too if I ever needed it. I got a letter from my GP (but it could be from any doctor, whoever knows you best or is most sympathetic) explaining that I needed breaks for a medical problem - she left out the embarrassing details!

I then made an appointment with one of the uni's disability advisors - every uni has them, and they deal with chronic illness (or acute illness during exam/paper time) as well as other disabilities, learning disabilities, etc. They should be able to guide you through the process if you do decide you want their help.

Oh, and when I lived in a hall of residence, the Disabled Student Allowance covered the diference in financial cost for my en-suite room, since I never would have managed without my own bathroom. I only had to pay the cost of a non-en-suite. There's sometimes help out there if you look for it.

Re. IBS: I think IBS is used whenever doctors don't know what's wrong, and many different conditions end up getting called IBS. Weight loss is not a part of it though!

Just wanted to back that up and say I got all of that at uni as well, plus extra time in exams. It would definitely be worth talking to your disability office about what could be available to you and talk to your lecturers about how you are struggling.

 

[x0lou0x]

My last few posts were very defeatist but I went to see my new consultant at a different hospital yesterday and he was brilliant. he said he wanted to start afresh and seemed very concerned the last consultant ended my referral with no medication or treatment at all.
He has requested an mri, ultrasound, colonoscopy (shuddering at the thought of doing the bowel prep again) and an endoscopy down my throat. he has also suggested eating all the foods I have cut out even if they make me poorly.
bit of a pain i'm probably going to have the majority of tests in the middle of my assignments and exams but I will definitely email the support staff and let them know if this is the case
I am so relieved this new consultant taking it seriously! thanks for all the advice

 

[dannysmom]

Great news! Good luck with the testing.

 

[CrohnsChicago]

That's great to hear that your new doc is set on making sure no stone is left unturned in finding out what you've got going on. And it helps tremendously to feel like you are being heard.

I would say with all the tests and other things you have going on, make sure you are making time for yourself to relax mentally and physically. Stress has a tendency to make symptoms feel much worse no matter what you have going on health wise so just find a moment or two in each day to relax.

Good luck with your testing and I hope you can find some answers soon!

My last few posts were very defeatist but I went to see my new consultant at a different hospital yesterday and he was brilliant. he said he wanted to start afresh and seemed very concerned the last consultant ended my referral with no medication or treatment at all.
He has requested an mri, ultrasound, colonoscopy (shuddering at the thought of doing the bowel prep again) and an endoscopy down my throat. he has also suggested eating all the foods I have cut out even if they make me poorly.
bit of a pain i'm probably going to have the majority of tests in the middle of my assignments and exams but I will definitely email the support staff and let them know if this is the case
I am so relieved this new consultant taking it seriously! thanks for all the advice

 

[Niks]

Fabulous news!! Sounds like a great Doctor, who really wants to get to the bottom of things, good luck xx

 

[tots]

If you are having trouble with your eyes,go to an eye doctor.

If you have ititis, it can be one step to a diagnosis. But, even if you don't it dosent mean
You don't have IBD. It's just something Crohn pts can get

Lauren

 

[bozzylozzy]

starting afresh sounds like a great idea
so which test are you having done first?

it does make sense that they want you to eat things you have cut out - because you dont want a false negative if they test for coeliac or something like that.
good luck!

 

[x0lou0x]

Hi BozzyLozzy,
I am confused as i have a preop organised for a endoscopy and colonoscopy on the 22nd but no appointment for that and i have an appointment booked for an mri on the 4th march with picolax and apparently they are injecting some stuff in me? i forget what.
I am feeling a lot better this week and the last, and i am wondering will anything show up on the tests if i am still feeling good at the time of the tests?
when i say better, i mean i'm down to 2bm's and the fatigue is really bad sometimes but other days i'm ok, still having a blood but not as much and abdominal pain is still there but not as bad.
Thanks

*Edit* I have had a red non raised non painful rash on my nose and cheeks the last few weeks, looks really bad just after the shower, has anyone had this/knows what it is? thankfully it covers with makeup but i don't like caking my face in foundation