Completely stuck

[marmite11]

Hi everyone.

I am new to this forum and generally just wanted to find out if anyone has suffered similar problems or has heard of similar issues.

Basically I have been unwell since I was 16 (11 years now). To cut a long story short, i lost weight, had diarrhoea, cramping so they did a colonoscopy and found ulcers in my large bowel. They said it presented like crohns and put me straight on to asacol. I was on this drug for a while but the diarrhoea got worse and the pain spread to the other side as well so I went bk to the GI. They said that they didnt know what was wrong, that my barium meal was fine and that the biopsies from the ulcers in my gut did not confirm crohns so they felt they had been treating me for the wrong illness and felt maybe I had bile salt diarrhoea. They put me on more drugs, took me off asacol and said if it didnt get better then they were completely stuck and 'sorry'. I was 18 at the time and cried my eyes out upon leaving.

My mum demanded a second opinion. I had an endoscopy and another colonoscopy done, ulcers had gone so i was diagnosed with severe IBS. THe symptoms continued. The ibs meds did nothing. I then started bleeding. I bled if I ate food I couldnt tolerate, then I started bleeding more often. They told me it was piles and put me on creams for months. In the end the pain was so unbearable I begged them to send me to surgery to have the 'piles' removed. When I saw the surgeon he was very peeved off to find out it wasnt piles at all but an anal fissure. I had surgery. The anal fissures still come bk now and then. I then found a pretty good GP. She believed I had some IBD (theres IBD in the family heavily), so she treated me with steriods up the bum whenever i had a very bad spell and they WORKED!! She said she cudnt give me a script for them properly until I had a firm diagnosis so re-referred me bk to the second GI. I saw them and they said 'bleeding was normal for severe ibs' and wouldnt take me seriously at all.

I then asked for a third opinion. My GP concurred. They felt it must be an IBD and they have been really good. They say all my symptoms fit perfectly but every single test returns negative/normal-they did a white blood cell scan, a small bowel MRI/ ultrasound/ colonoscopy. The GI was saddened by it all, he said he was so sure but without firm proof he cant treat me. He was very apologetic and said for now we must continue to treat as very very severe ibs. I had to agree. \however the drugs dont work so i dont take them anymore-if anything some of them made me worse!

Then I moved out of the area and saw a new GP. She now wonders if i have endometriosis as my bowels are 10 times worse around my period. Ive been put on tablets to stop the periods which has helped but i still have the bowel symptoms (they just dont get as bad as they did as my period wud literally wipe me out for DAYS) and severe food intolerances. Everyone is baffled by me. Im due exploratory surgery later this yr to see if endometriosis is definitely there or not.

But since all this other conditions have been diagnosed--ME/Fibromyalgia/lyphedemia/TMJ/HSP/Tietze syndrome/vitamin deficiencies chronic sinus problems etc etc. Then they found my ANA blood test results came bk abnormal and there is now a possibility of an autoimmune disease however the illness (if it exists) is too much in the early stages for them to identify it.

At the moment I am just so stuck. My bowels just wont behave and I now only have a BMI of 17. They are saying if i lose any more weight I am in trouble but I cant keep food in and I just dont know what to do anymore. They sent me to a dietitan recently but she was awful. She said I sud try a new diet so I did what she said and it made me worse and I lost more weight.

I think im writing here because I just wonder if anyone else has had similar issues or if anyone reading this thinks im an idiot for still pondering whether this is IBD that is masked somehow?? They told me the ulcers they found yrs ago must have been from an infection as pathology didnt confirm crohns...so does that mean I should rule it out?? I have pain EVERY day but somdays are worse than others and i secretly wonder if those very bad days are days when maybe those ulcers come bk or is that insane thinking?

Im just at my wits end.

Thanks for any reply.

Grace.

 

[Trysha]

Hello Grace and welcome to the forum.
You may find others with somewhat similar problems if you look at the sub- forum called:
"Undiagnosed Club" just click on this link on this page and you will find lots of interesting information.
I am so sorry to hear of all the problems you are experiencing and you need a really good gastroenterologist on your side.
feel better soon
Hugs and best wishes
Trysha

 

[Gculk]

Can they repeat colonoscopy? The 'negative' for Chron's is a lack of granulomas, which doesn't rule out Crohn's, but rather does not confirm it. Similariy a biopsy for Ulcerative Colitis can be inconclusive in the same manner, over different structural abnormalities.

As well, later 'clear' colonoscopies can mean simply that you do not have active inflammation at the time, and your wounds have healed.

IBS shouldn't cause weight loss, so grossly underweight indicates against IBS.

I know it's frustrating! I'm in the undiagnosed stage as well. No answers, not a clue. Luckily I'm not so sick as you are, but I'm not doing well. Hope you get answers or feel better soon!

In your boat,
Nathan

 

[StarGirrrrl]

Grace, I am so sorry for all you have been through.

Is it possible for you to travel to London, there is a very good NHS GI Hospital there called St Marks. Alternatively you could find another Hospital closer to you and go to another GI unit, your GP can refer you to either.

Also I think you could benefit from seeing a Rheumatologist due to the ANA blood test to have the auto-immune angle looked at. It is not in any way acceptable for you to be told, without any testing, that it is too early to tell what it is.

Nag them over the surgery, get on the cancellation list etc, the sooner you have it the better. You could also mention your severe bowel issues to the surgeon and see if they would be willing to have a look and take some bowel biopsies while they are in there.

You aren't in any way an idiot, an idiot is the medical staff that have been continually fobbing you off.

I know how hard it is but you need to shout and scream at people until you get somewhere. If your Drs are telling you they can't help, get them to refer you elsewhere to someone who can -I have tried Rheumy, 2xGI and Endocrinology Dr at local Hospital without success, so am asking them to send me somewhere else to someone more highly specialised after they review my case with their senior colleagues.

For what it's worth I don't think you should rule out Crohn's, one member on here had two capsule endoscopies (have you had this test? They are rationed on NHS but from your symptoms you would qualify if your PCT limits the use), one with ulcers and one totally clear. She got a CD diagnosis in the end.

 

[marmite11]

Thank you every one for your kind replies.

Things are worse today. The pain has been a lot worse the last few days and so I booked an emergency appt with the dr today and they have said im now borderline admission because my weight is just too low and the pain im experiencing when they press my belly is too much. Im frustrated as a dietitan that I saw last week told me to come off all fatty food and retry corn and wheat. I did as asked and have been quite ill and lost more weight. She phoned me a couple days ago after only 3 days on the diet and basically told me to come off the diet as I need all the fat I can get so why oh why did she take me off it in the first place??!! (Sorry mini rant over!!)

It is lovely to read all your kind words. I have seen rheumatology and its all very confusing. I have seen two different sets of drs about it. One tested me every yr and found my ANA levels raised beyond what they should be each yr. He said the further tests could not confirm which illness it was. He is a pro who i saw for gum issues as I have had gum illnesses that are extremely rare in someone of my age. Turned out he specialises in autoimmune illnesses too. He asked for me to be sent to rheumatology. Rheumatology were quite dismissive. They did one test and found it positive but I was only borderline in the dangerzone with their test so they said it was fine. I have asked them to repeat it as a year has gone by and im due the results at the end of June. They are very negative towards it and keep suggesting im too young for any of these problems. Grrrr!

Is St Marks a hospital that anyone can be referred to and also no i have never had the pill camera test--is that something they can do in London??

Thank you for any replies. I have learnt over time that i need to shout to get anywhere but at the moment im struggling to know what to shout anymore. Interestingly my new GP said i she didnt think I had IBS purely because I was so thin so she is convinced its either endometriosis of the bowel and/or possibly crohns or colitis. I found steroids worked back along but today I was told, despite them thinking the steroids would help i need the diagnosis to have them.....


Sigh!!

 

[StarGirrrrl]

Yes you can be referred to St Marks. As for the Pill Camera test you'd have to do it locally, ask your GI about it. Even if you end up going to St Marks it's your local PCT who fund it so if they've already said no then they won't pay for it in London.

If Rheumatology are being dismissive then ask to see another one at your Hospital or get referred somewhere else where they are more supportive. Don't waste your precious energy on Drs who are dismissive and unhelpful. You don't have to take what you are given in the NHS- be assertive and demand to be sent elsewhere, sounds like you have a fantastic GP who will help.

As i've said, gotten nowhere with the Drs at my local Hospital so I am cutting them loose and going elsewhere. It's taken me a couple of years to realise I am not going to get the magic/help answer, but i've realised it and I am not wasting my time with local Hospital any more.

 

[dahlfacepoet]

Try to hang in hun. I'm 22 and undiagnosed as well. My GI is so hung up on my age, he won't treat me for anything but IBS, even though I've lost 50lbs in the last year. Some days I just have to trust that there is an answer and someone out there has it. My friend, who has been diagnosed with MS for years, just found out she may have been misdiagnosed. She did this by diagnosing herself, by placing her urine in the sun. It turned purple which is a positive diagnosis of Porphyria, a very rare metabolic disease. Her next step, was to take in articles and books (she had written) as well as instructions for testing for her doctors. If they don't know what to do, TELL them what to do. I am learning this.