The latest- no answers yet.

[StarGirrrrl]

Hi, Well I don't feel any further along but suppose I am. Colonoscopy fine as you know and for the bloods as usual only abnormality is the CRP. Barium appeared fine according to the radioligist's report. But GI is not giving up and seemed more emphasis on CD and not so much on IBS this time.

He is going to set a second opinion on the Barium (he did the scope himself so no need there lol), talk to my Rheumatologist (whom I have seen for joint pain which was the start of this) and see if another WBC scan would be the best next step. I know Rheumy is convinced it's a bowel issue after the positive WBC scan and negative MRI's of the affected joint so I am sure he will act in my favour.

He did also speak of a pill-cam test but as that is images only, no biopsy he is unsure how helpful that would be. Though given the choice between pill cam and upper endo I would go for the later; I was very against this but realised it's not that bad, and as it does biopsies as well as images that would be the best choice. I know it's rare for a pill cam to get stuck but the thought of it having to be cut out freaks me a but lol. Anyway, I may not even be offered that.

He said he can't start treatment for Crohn's without knowing either way. Poor man was literally tearing his hair out and he hasn't got much lol.

I have to say if both tests were normal and he said it was IBS then my plan was to ask for another WBC scan so may be getting my wish which is good. That was the scan that set this all off (and the 4 years of high CRP).

In the meantime more bloods tomorrow (FBC, CRP, U&E, LFT all of which have been done lots and only CRP ever comes back abnormal.), he wants me to increase the codiene to 8 a day which doubles what I am currently taking (starting with 6 since that is a scary lotta codiene!) and I will be seeing him again in 2 weeks. He suggested increasing the Amitryptlyine upto 25mg but I said no as I would rather not and it's only a case of a few weeks anyway.

He did suggest it might be an ulcer in the small bowel although several things don't fit with that, and made sure I had nothing wrong "down there" He also recommended changing my toothbrush to see if that helps with the mouth ulcers.

So let's see what happens in 2 weeks which is not that long I don't suppose.

 

[littlemissh]

Sorry you are not much further forward. At least he is taking note of how you feel now and being very proactive.
Good luck in 2 weeks.

 

[Cat-a-Tonic]

Aw, Star, I know you were really hoping for answers today and I'm sorry to hear you're still undiagnosed. I know the frustration of normal test results and I really feel for you. I hope you can get some useful answers in 2 weeks. And it's very good that your GI is taking this seriously and not treating it like it's IBS.

If you're concerned about the pill cam getting stuck, please don't worry too much. If you do get the pill cam, they can give you a "patency capsule" which is a fake pill the same size of the pill cam. If you pass it, you know the pill cam won't get stuck either. If you don't pass the patency capsule, I believe it dissolves on its own so it won't cause a blockage. I had both the pill cam and an upper endoscopy done a few months ago (not at the same time of course) so feel free to ask any questions. The upper endo was really easy because there was no prep involved (just had to fast overnight and had the test first thing in the morning), and they knocked me out so I don't remember a thing and had no pain. The pill cam was fairly easy but I had to drink 1/2 prep beforehand to clear out my small bowel. That part wasn't fun but the pill cam part itself was fine - swallow the pill, wear a belt contraption for 8 hours, and then at the end of the day return the belt and wait for the results and for the capsule to be passed.

Anyway, I really wish you luck in 2 weeks and with whatever tests you decide to have done in the future. I really hope you can get a firm diagnosis and some proper treatment, and soon!

 

[allieinwonder]

Wow, I didn't realize our stories were so similar. I just posted in the undiagnosed thread. Did the Amitryptlyine help you at all? I was just put on it as well.

I'm glad they are still pursuing your diagnosis! I really hope they find the proof and soon!

 

[StarGirrrrl]

Thanks! Something really funny happened, I told my GI yesterday I would do bloods Monday (since path lab was 10 mins from closing and I don't give up my blood easily). So I decides to be super efficient and do them today only to have a call from my GP a few hours later to say GI had been in touch and wanted more done.... So another trip there next week, those poor nurses and my poor wallet, since it involves 4 buses my "7 trip" ticket would soon be used up so I have to get a £4 unlimited day ticket each time...

 

[StarGirrrrl]

Well I realised I can't do 8 codiene in a day- they irritate my stomach but are fine when taken with food. Eating 4 times over 16 hours is impossible. So sticking to 4 tablets with an additional dose of 2 if I possibly can a day. Previously I was taking up to 4 per day on an as needed basis
Already feeling groggy- going to try and stick it out for a week.
Why is nothing ever simple?

 

[Jennifer]

Change your toothbrush? What crazy Brillo pad have you been using? Soft bristles are best for everyone as regular ones slowly wear away your tooth enamel. At least that's what my old dentist told me. Maybe a toothpaste for sensitive teeth is in order as well that doesn't contain whitening agents.

Is a mouth ulcer the same thing as a canker sore? Is it bigger? Is it swollen? Does it bleed? Maybe I'll have to look it up.

How is eating 4 times within 16 hours impossible? All you really need is a little food in your stomach for those pills to not bother you. Doesn't have to be a full blown meal, could be a small snack.

Take care, I hope you get your answers soon. Its nice to have a doc who doesn't give up.

 

[StarGirrrrl]

Thanks crabby Yeah I think canker sores and mouth ulcers are pretty much the same thing, he said the most common cause is bacteria from old toothbrushes and I had been using the same one for some time.

The ulcers I get fall into 3 catagories: small white ones (mainly on tounge), great big sore lumps, (generally in the top, side of my jaw), and what I call the dual ones, had one recently, it was part sore lump on my jaw and part ulcer which came down from my jaw and wrapped itself over the teeth back there, and as they are short and stubby, could hardly feel them for a few days!

There is a very good product called Bonjela in the UK, an over the counter remedy, but it stopped working for me, i'd put it on and want another application 10 minutes later, and had to wait three hours before I could use it again! Currently use a naturally based one reccommended to me on here, can use as much as you like as often as you like.

Eating for me at the moment is really hampered by a poor appetite, and I am getting up at 9 or 10 am, haven't wanted breakfast in a long time so the first time i eat in a day is usually 1pm or as late as 3pm (if i'd been able to go out, I don't eat now until I am home for the day, in an attempt to have some control over my D), so 4 doses is just not going to happen. And if i've a morning appointment (something I avoid where possible but sometimes neccessary) I am eating last at 6pm to give me the best chance of being able to leave the house the next day (always worse in the mornings).

Anyway I managed 4 tablets yesterday and things were certainly slower than usual this morning so going to stay at that dose for a few days and see how it goes.

I had 2 bread rolls and a pack of snack a jack snacks for my evening meal, took 2 tablets and that wasn't enough food, still got belly ache from the pills! So for me it's quite a bit of food I need so they don't irritate me. I'd get bellyache before with one tablet at a time if I hadn't had enough food so am really going to try and have more, hard when i've little appetite and can only eat a few things!

It'll be interesting tomorrow to see what other bloods he decided to get done, I appreciate him covering all bases but i've had all the standard tests numerous times and only the CRP ever comes back abnormal! Better safe than sorry I know. Hopefully my next appointment comes tomorrow.

 

[allieinwonder]

I get terrible mouth sores as well. I have 2 really bad ones at the moment. I hate the ones on the tongue..ugh they are the worst!! I have tried all of the over the counter products, and I have even gotten a prescription for a mouth rinse type thing to help them, but they still lasted a month or longer. What I found that helps is trying to keep stomach acid at bay, since that can really irritate the sores. When I was on Nexium they healed much faster than usual, and I'm guessing regular antacids would have the same effect. I also use a toothpaste made for people who get nasty canker sores.

 

[StarGirrrrl]

I had a good tip from a friend with UC, to use a child's toothbrush when they are bad

And the latest bloods are for lupus/anti immune disease antibodies, had some of them before but not all. Still not got my appointment letter either, so much for "urgent"!

 

[StarGirrrrl]

So I phoned GI's secretary, no appointment been booked but I am down to get one (we're 1 week into a see me in 2 weeks here), GI is coming into do admin Friday so she will talk to him and see about fitting me in, March clinic's are tight apparently. If the receptionist had stayed to wait for me Thursday this would not be an issue (again).
Had to cancel plans again today, something I really wanted to do. I keep making long term plans in the hopes but never well enough, even when they are 6 months ahead.
You know my thinking is I really should accept I will never be better, it just goes on and on and on, 5 years ago my symptoms started, 4 years ago mis diagnosis and 18 months since tests started again (technically since I was seen by 2 departments before being sent back to gastro). Even 4 years of raised CRP in blood and a positive WBC scan is not enough apparently to diagnose me. And 6 months of being really bad and only being able to eat a few foods (and I mean a few). But what do they care, it's just my life i'm losing after all. Every time I have a hope it is crushed, what is the point of hope anymore, or believing things will ever change.

If I could go private I would, but I would looking at using up my savings with no guarantee of an outcome

 

[littlemissh]

Starr, try not to be too despondant.
What has changed is your consultant clearly is concerned about you otherwise he would not be seeing you in 2 weeks. It isn't his fault outpatient reception closes before outpatients finishes - which is quite silly but seems to occur in most hospitals. He will probably be as annoyed as you are frustrated.
Hang in there until he sees you.
Are you having supplement drinks or are you managing to maintain your weight on what you are managing to eat? If you are losing a lot of weight it can make you feel worse. It would be something to discuss with him when you see him.
Have you had a pill cam?

 

[littlemissh]

just re read your post and noted you haven't had a pill cam. An upper endoscopy wouldn't show most of your small bowel (unless a DBE ) so you would be better with pill cam. An easy test and if your small bowel follow through shows no strictures the capsule won't get stuck. Even if it does , often it eventually pases. Mine pillcam was very delayed in my small bowel ( my SBFT was several months previously and they didn't repeat it before my pillcam) but it did pass eventually.

 

[StarGirrrrl]

I try not to be too despondent and then more sh!t gets heaped on me. Every fresh delay and problem means more of my "life" spent ill, exhausted and in pain at home. I am 23 and my mother has a better social life than me! I am not saying she can't have one but she's had her youth and gets another go, and here I am having grown so ill it's a good day if i can leave the house for errands, can't see a film, meet friends outside the house, nothing. I make long term plans, as far as 6 months ahead and end up cancelling.

I was specifically told last week an appointment would be booked and the form marked as "urgent" so it was done the next morning. I was very upset that nothing had been found still but I was going back in 2 weeks which wasn't so long. Tell me for crying out loud if you don't know when it will be booked, just quit raising my hopes every time!

Just had the barium meal to look at small bowel so far, i've realised a pill cam is normally fine and I was worrying too much. He wasn't sure anyway if that would be helpful, won't know what's next until I see him again.

I am managing to maintain weight but as crisps and biscuits are 2 of the few things I can eat, I think perhaps it's false if you get me.
Anyway, it's getting near my nap time, I lead such a thrilling life

 

[same-old-thing]

Starr: I know exactly where you're coming from. The pill cam does seem like the next step for you though, and would hopefully show something up that other tests could not. I recently had it done and aside from the prep it was one of the easier tests I've had. I have noticed a lot of people have been diagnosed this way. That wasn't the case for me ... mine came back normal, so it's back to square one for me - but it may be different for you. My bloodwork comes back consistantly abnormal and worsening so I am beyond frustrated at this point...but obviously something is going on for both of us. It's so hard to stay positive and fight back, when we don't have any clear ideas of what it is we're fighting!

 

[ameslouise]

Starr, I just wanted to pop in to say hang in there. There are so many people on here that have gone so long without a diagnosis. It must be terribly frustrating and really beating on you mentally. You know something is wrong, why can't they find it!! We can put a man on the moon.... sheesh. They should be able to come up with something, right?!

Well, I'm thinking of you and rooting for you and hoping they come up with something soon.

xo - Amy

 

[StarGirrrrl]

Amy, a man on the moon, I love it.... :lol2:

Sameoldthing, have they given you a WBC scan at all? As that apart from my bloods is the only thing found so far. My CRP is steady at 22-25 even though am much worse, is a mystery!

Anyway, had a call today and i'm going back to see GI on Monday afternoon, quite a quick result for a change! Surprising too, that'll be 10 days since I was there and not 2 weeks, I was told earlier in the week though that the March clinic's were busy and he'd probably have to squeeze me in somewhere, just didn't expect it to be so soon.

Trying not to read anything into it since I always get my hopes dashed lol, at least I should know what tests are next soon (and I think the Pill Cam is a really good idea too).

 

[monkey]

Starr- your story is just soooo much like mine. They keep telling me it's IBS this time. I'm sorry, I was diagnosed with Colitis 9 years ago, then Crohns 5 years ago what makes you think, Mr GI, that everything has suddenly changed . . . . now give me meds to make me better!! It does get soooo frustrating!
At least your consultant seems to be doing something useful not the all too common 'you're normal, go away' approach.
As for being stuck in the house, I'm with you there, I'm 25, have been off work for 10 weeks now, literally unable to eat enough to get out. I see you ate snack a jacks, they gave me a really bad tummy the other day, it seems my body doesn't like rice right now. I'm on potatoes and spaghetti hoops (or alphabetti, it's far more fun!), thats about all my body can take. Even ensure are tricky some days. I assume you have a supply of them??
I love the optimism of the Docs . . . They confidently say 'I'll see you next week' when we know that ain't ever going to happen!! We should start a thread . . . What consultants say, and what it actually means!!
Take care, chin up, moan away, we feel your pain.

 

[same-old-thing]

Starr....I think my bloodwork has in the most part come back normal - they haven't exactly been too communicative regarding details of any of my test results...only saying..'normal' - as if that's a good thing (which it is, but I think you know what I mean after dealing with this for a number of years). I am constantly battling anemia and weight loss along with all the other 'IBS' issues. All the typical reasons for the anemia have been ruled out....and so it goes on. Good luck with your GI appointment!

 

[littlemissh]

Good luck tomorrow! I'm seeing my consultant tomorrow morning as well, hoping no need for further AZA increase.