My current situation

valleysangel92 · Aug 21, 2014

Hi all.

I know it's been a while since I posted an update so I thought I'd let you all know what's going on with me.

I'm currently flaring, it started with a 2 week hospital stay at the end of June that left me on steroids and pentasa. When I left hospital I was on 30 mg of prednisolone.

In the weeks since I've tried to reduce my dose, supposed to be going down 5mg every two weeks, but when I got to 15 things rapidly went down hill, and at 10 I was right back to square one, so I'm back up to 20 mg until I get to see my consultant on the 26 th.

At the moment, I am in daily pain and struggle with constant fatigue. Everything I do is so much harder than it used to be. My stomach hurts all the time, and I have to use strong pain meds (tramadol) almost every day which some of you will know isn't something I do lightly, but without it my pain score goes up to 7/8. I'm also getting a new pain, which is on the left side under my ribs which is worse every time I eat. Sometimes this goes away after about half an hour. Other times it turns into the most excruciating cramps that have me doubled over unable to sit up or walk. I also get frequent nausea and a feeling of having things stuck in my throat.

As a result of this flare, I have been declared unfit to take up my place at university and therefore my place will be withdrawn. So I'm now trying to figure out what to do next career wise too. For the moment I'm focusing on getting this under control and then I might go down the child care route for a few years while I get everything stabilised. I'm due pretty major oral surgery next year or the year after too so I need to keep that in mind when I plan.

I don't feel like the pentasa is doing much for me. From the way my body reacts when I try to taper the steroids I'd say it's those that are currently keeping me stable. I have been referred for a colonoscopy, but that was in July, and it was marked urgent, and I've not heard anything yet, so that's not much use.

I think the plan may be to start me on azathioprine, as this was mentioned when I was in hospital but they changed their minds when my MRI was clear, and then put me on pentasa in a follow up appointment as my fecal cal was 'very very ' high and my consultant was really concerned. I'm not sure if they will up or change my medication before I've had my scope, but I really hope they do something when I see my consultant Tuesday, I'm incredibly run down right now.

As always, any advice, suggestions or experiences are more than welcome. Sick of being sick right now.

Cross-stitch gal · Aug 21, 2014

No advice or experiences. Just wanted to let you know that my thoughts are with you and to send lots of hugs your way. I hope they can get you figured out and that you'll start calming down at least somewhat soon. :hug:

DJW · Aug 21, 2014

I'm so sorry to hear the news. Is their a chance to reapply in a year?

valleysangel92 · Aug 21, 2014

This year was my third attempt. I can reapply but honestly I can't afford to financially at least for a few years and it's just too much of a battle mentally, it's happened 3 years in a row and I really need a break from it. Plus as I said I have surgery in the next year or two etc so it's not really the best idea I don't think. I'm devastated but my health has to be my focus.

DJW · Aug 21, 2014

I understand. Your health comes first. Whatever you choose to do, know this (bases what I've seen of you on this forum) you have a lot to offer. Don't ever forget that.

valleysangel92 · Aug 21, 2014

I'm not saying it'll never happen, just not for a while. I'm young so I have time on my side. Thankyou so much

CrohnsChicago · Aug 21, 2014

Hang in there valleysangel. And yes, sometimes plans need to be rearranged, but you shouldn't give up on them entirely. You've got the right attitude. :heart:

Here's hoping you have a more speedy recovery ahead! :hug:

gotumtum · Aug 21, 2014

Hey Valleys Angel - Is there any way you can study by distance learning? - I do and could not have studied the 'normal' way

valleysangel92 · Aug 21, 2014

Thanks guys, the support means a lot

Unfortunately I wanted to study nursing and there is no distance or part time option, the only other university course I would be interested in is teaching and again that's not available as a distance course, and also even less financially viable at the moment. (Nursing has no tuition fee in the UK as it's paid by the Nhs)

gotumtum · Aug 21, 2014

Bother and hugs!

valleysangel92 · Aug 24, 2014

Gah. In so much pain tonight. Stomachs in knotts and I've had reflux almost non stop for the past few days, omeprazole is only working for a few hours at a time.

I still have no sign of my scope. Hoping my GI will be able to speed things up.

I've also had more episodes of cramps. They cripple me and leave my entire body aching for days. Crohns is truly kicking my backside right now.

Tuesday cannot come quick enough. I'm hoping they will have a plan and not want to wait for the scope.

UnXmas · Aug 25, 2014

I'm very sorry things aren't so good. I know what it's like to have to change your life plans because of health. You may find a degree you are interested in that is not physically demanding - I know it's not your priority right now, but there are many options out there, including areas that cover medicine and childcare from a more social science perspective.

Make sure you get everything across to your consultant - do you have a good relationship with him/her?

I hope your appointment goes well. :hug:

valleysangel92 · Aug 25, 2014

Thanks UnXmas, I know there are plenty of other degrees etc, to be honest though any degree with tuition fees is going to be a problem for a few years at least, and I know that whatever I end up doing I want to be hands on.

I think I have a fairly good relationship with him, but its really early days, tomorrow is only the second time I've seen him as an out patient, but so far so good. He seems to make a lot more effort than my last one and he really listens to my concerns and point of view. He knows I've been struggling the past few weeks already as the nurse let him know, but I will make sure I let him know myself too. I have a list of questions for him at the ready and will be making a list of all the issues I've been having to make sure I don't forget anything.

Jay Woodman · Aug 25, 2014

Thinking of you & hoping you will be doing much better soon : )

valleysangel92 · Aug 26, 2014

Well my appointment went pretty well. I'm starting azathioprine as of today. I'm starting at 50 mg and will be seen again next week to see how I'm doing. Going to be having weekly blood tests for a little while to monitor my liver and white blood cells etc. I'm staying on 20 mg of Pred until my next appointment at least, the plan being to up the azathioprine as we lower the Pred. My GI said he would ideally of preferred to have the colonoscopy first, but since there's no sign of it there's no sense in leaving me on steroids indefinitely. Hopefully this will get me on the way to feeling better.

Cross-stitch gal · Aug 26, 2014

Hopefully this will work out for you. Glad to see you leaving the steroids though...

valleysangel92 · Aug 26, 2014

Me too.. I can't wait to start tapering, hopefully next week! They've really helped me, but I look like a hamster and my skin and hair are awful, I have cracking skin from where it's so dry and if I brush my hair the wrong way my scalp bleeds, and I know it really can't be doing my bones any good.

Cross-stitch gal · Aug 26, 2014

Yeah, my original GI used to hand those things out like candy whenever I had a flare. They really are awful. My current GI doesn't want me anywhere close to them. I'm glad to not be in need of them anymore. I can totally understand what you're talking about...

StarGirrrrl · Aug 26, 2014

Sorry if I am stating the obvious, or missed something, but why isn't your GI chasing the scope? Or maybe you could call the endoscopy centre direct and see why the appointment hasn't been issued yet?

valleysangel92 · Aug 26, 2014

This is just the way things are here. Other than bring me in as an emergency there isn't much my consultant can do to speed it up. Endoscopes /colonoscopies are done in hospitals not an outside center. Although I've heard that other people have waited less time, I also know that there are a lot of people who have waited longer. My boyfriend has symptoms of Gerd, and was told that in his area (different to mine) people wait up to a year for routine appointments. My GI referred me as urgent, so I'll be on the quicker list. I have a feeling that I may have been on the urgent list for my first one judging by how long it's been this time, and that was about a 2 - 3 month wait.

Due to red tape etc they have to keep a certain number of slots open per week in case of emergencies, and that means that they can't give those appointments to others, which means waiting lists end up longer. It's irritating, but it's just the way it is. I've learnt to pick my battles when it comes to waiting times.

valleysangel92 · Aug 26, 2014

Apologies if that was a load of waffle. Hardly slept last night and had to be up 6.30 am for the appointment. It's 9 pm here now. Plus fibro fog doesn't help.

StarGirrrrl · Aug 27, 2014

Oh okay thanks for explaining. Both hospitals I have scopes done at do them in house also but you can ring them like any other department, indeed I have done so in the past

I saw my GI a few weeks ago, he ordered an urgent scope (within 6 weeks), couldn't book there and then since the staff member at scope unit was out. Phone call a few days later (I phoned in since they hadn't gotten back to me in the time frame I was given) got me an appointment 15 days after seeing GI. I could have had one 5 days earlier on the Bank Holiday but couldn't due to there being rail replacement buses. Will be hard enough getting 20 min train could not comprehend a 45 minute bus!

The other Hospital was much like the set-up you describe, you're told the current waiting time for your priority (I think it was 12 weeks then), eventually an appointment came through 6-8 weeks later for the 12 week mark. Again I could have phoned them direct but didn't bother.

valleysangel92 · Sep 1, 2014

I didn't realise you were in the UK when I responded, I can call my endoscopy department, but there isn't a great deal of point. I did it with the last one and just got told it depends on the number of emergencies they have etc (my hospital has 2 types of emergency, those that are inpatients and a 10 day referral system) .

I've got another follow up on Wednesday, might ask them about it and see where we are. I'm just glad I'm not having to wait for treatment.

Wow, couldn't imagine trying to get back from a scope on the train! My hospital won't discharge without someone to drive you home and stay with you.

Azathioprine wise I've been doing ok so far. Felt a bit sick the first few days and joints are very achey but that could be my fibromyalgia. Will see what happens when my dose is upped.

StarGirrrrl · Sep 1, 2014

I did have someone with me who I live with, just no one to drive me all the way, so did taxi's and train (not enough money for taxis all the way). If I had asked for Hospital transport i'd probably be waiting around for hours so I didn't bother.

In the event I was fine, did end up needing lots of meds during the scope but I slept for an hour in the recovery ward without realising until later lol. Thought it was odd my Nurse asked again if I was okay when i'd only seen her minutes before, she'd actually been off on her lunch break for an hour! :ybatty:

They did know how I would be getting home and didn't let me go until they were sure I was okay.

I also did Picolax with special diet instead of Klean Prep no diet this time which was so so so so much better. Hardly any nausea and cramping, and apart from a hairy two hours after my second dose ( 8am & 4pm) I was only going 1-3 times an hour. Running clear by 9pm and fast asleep by 10pm. Only a couple of bathroom visits in the morning before it all dried up.

Considering I am significantly anaemic right now, and had had to stop iron tablets 2 weeks before the scope I think I did really well overall.

I do hope you feel better soon and get the scope you need

:ghug:

valleysangel92 · Sep 1, 2014

I understand that, would make things so much easier for me if my hospital wasn't so strict, but it has to be driving, or hospital transport which like you said takes hours.

Haha bless you. I did that after my endoscopy for coeliac.

Picolax is so much easier! Although I did still have to do the special diet when I used that. Unfortunately my new GI isn't keen on it and wants me to give moviprep a try -_-. If it doesn't agree with me then he's said I can go back to picolax in the future.

Muppetgirl · Sep 2, 2014

Just wanted to say that I had to drop out of a health related training for a while when I was dx. It was horrid at the time, but a couple of years later I got back in the saddle. I can totally relate to the tiredness and pain. You absolutely should do what you need to for your health. You can pick up the rest in time.

I hope your appointment tomorrow is useful. Let us know how you get on.

valleysangel92 · Sep 3, 2014

Thanks muppetgirl.

My appointment went well, aside from scaring the nurses with a heart rate of 143. Consultant didn't bat an eyelid though. Aza is now being upped to 100 mg daily. Steroids still staying the same for now. Being seen again next week. Hopefully be allowed to start tapering then, even my consultant says I look 'puffy ' (thanks) and they are effecting my mood. Can't wait to be off them.

Muppetgirl · Sep 3, 2014

Oh my, I'm surpised your heart didn't motor on out the consulting room!

It's good they're keeping a close eye on you. Hope you get to taper off soon.

valleysangel92 · Sep 4, 2014

The look on the nurses face you'd swear my head was going to fall off haha. Its happened before though so it didn't really worry me, it's just something to keep an eye on.

I'm very impressed with my new team still, definitely getting better care than I ever have before and they really have genuine interest in me.

Edit - I have just realised its been 10 weeks since I was referred for my 'urgent ' colonoscopy. No idea how long the usual wait is, I meant to ask yesterday and totally forgot (too busy convincing the nurses I wasn't going to collapse on them). StarGirrrrl, do you mind me asking what part of the UK you are in?

StarGirrrrl · Sep 4, 2014

Not at all I am in the east of England

However although both Hospitals I attend are in that area they are two separate NHS trusts. Far better performance from the one I am currently attending!

valleysangel92 · Sep 4, 2014

Ah okay! thanks

. I'm in South Wales, from what I can gather we have quite a difference in waiting times compared to much of England.

I'll be seeing either my consultant or the nurse next week anyway and will ask them if they know how long the wait usually is.

valleysangel92 · Sep 10, 2014

I saw my IBD nurse today. My bloods are still showing inflammation (first I'd heard of it), had more done today. Took 4 attempts to get enough blood.

I can reduce my steroids to 15 mg from Friday and see how I go. Then will see the nurse again next Wednesday.

She's also told me that if I need any letters or anything for my Esa /disability claim or for employers when I eventually get back to looking for work then she's more than happy to get that sorted out for me.

If everything is ok next week I may be allowed to go a month between my appointments.

Cross-stitch gal · Sep 10, 2014

Sorry to hear about the blood.

That doesn't sound like a whole lot of fun having to take 4 attempts. But, thankful to hear that things seem to be going well. Hopefully they'll finally continue getting better for you. Thanks for the update. xxxx

DJW · Sep 10, 2014

Hang in there valleysangel92. Sometimes vary small steps are all we can hang on to. I hope you're able to go a month between visits. I had a whole month with no doctors visits. It was fantastic.

valleysangel92 · Sep 10, 2014

Thanks both -

Cross-stitch gal - unfortunately it's not a new thing for me

have had up to 8 attempts in the past, including feet. I have some stunning bruises now! Xxx

Djw - thanks, wow that sounds like a dream

I can't remember the last time I went a whole month with out some kind of hospital or doctors appointment. Unfortunately I'll have to wait a while longer, even if my crohns visit goes to a month, I have to go to the hospital for my orthodontic braces (complex case, need surgery), and have to book my flu vaccine ASAP, and have coeliac clinic to attend next week (3 months late) . I can dream though.

DJW · Sep 10, 2014

O my gosh. You deserve a brake!

RickUK · Sep 10, 2014

valleysangel92 said:
Ah okay! thanks . I'm in South Wales, from what I can gather we have quite a difference in waiting times compared to much of England.

I'll be seeing either my consultant or the nurse next week anyway and will ask them if they know how long the wait usually is.

Hey I;m in South Wales too! Small world haha! Apologies for the slight off topic response lol

valleysangel92 · Sep 12, 2014

Haha awesome, valleys girl myself

. How do you find your care?

On another note, I started my prednisolone taper this morning, and tonight the pain is worse than its been for a couple of weeks. Hopefully it's just a coincidence. Really not keen on being stuck on these things any longer than totally necessary!

RickUK · Sep 12, 2014

valleysangel92 said:
Haha awesome, valleys girl myself . How do you find your care?

On another note, I started my prednisolone taper this morning, and tonight the pain is worse than its been for a couple of weeks. Hopefully it's just a coincidence. Really not keen on being stuck on these things any longer than totally necessary!

I live in the valleys too! Awaiting an appointment in next few weeks at P.O.W. hospital as my calprotectin test came back at 752, 50 and under is normal so all the GI is confident of at the moment is that inflammation is present for sure

valleysangel92 · Sep 14, 2014

Ah right I know it, I'm seen at the gwent and Ystrad Fawr. Hope your appointment doesn't take too long to come through.

Do you mind me asking how long you normally wait for scopes? I've been waiting since July for an 'urgent ' (I saw my GI tick it) scope and there's no sign, no one at the hospital seems surprised though.

RickUK · Sep 14, 2014

valleysangel92 said:
Ah right I know it, I'm seen at the gwent and Ystrad Fawr. Hope your appointment doesn't take too long to come through.

Do you mind me asking how long you normally wait for scopes? I've been waiting since July for an 'urgent ' (I saw my GI tick it) scope and there's no sign, no one at the hospital seems surprised though.

My sigmoidoscopy ... I was referred in March waited about a week or 2 for "prioritising" by the GI who then marked it urgent. Was seen August 18th. This next camera and MRI is quicker as a GI himself has actually referred me, as oppose to a Dr. So im actually looking at 6 weeks maximum this time. Got to ring tomorrow infact to discuss best date and time with their booking team and do some questionnaire????

Hope yours is soon

valleysangel92 · Sep 14, 2014

My GI referred me directly this time, so goodness knows how long people who are referred by GPs are having to wait. Thanks

RickUK · Sep 14, 2014

valleysangel92 said:
My GI referred me directly this time, so goodness knows how long people who are referred by GPs are having to wait. Thanks

Exactly. Being referred by a GP I waited roughly... 24weeks or so. This time is 6 via the GI. Suppose they got the authority to push it through quicker

valleysangel92 · Sep 15, 2014

Woke up with horrendous pain today, stomach spasms that had me doubled over. I was so rough that mum stayed home from work to take care of me.

I called my IBD nurse, she thinks it's the Aza. She's told me to see how I feel later, if I feel ok then I can take one, if not then wait till tomorrow. Either way I have to go down to one tablet (half my dose) and stay there until I see her Wednesday.

Hoping this is just a coincidence and I won't have to come off Aza completely.

RickUK · Sep 15, 2014

valleysangel92 said:
Woke up with horrendous pain today, stomach spasms that had me doubled over. I was so rough that mum stayed home from work to take care of me.

I called my IBD nurse, she thinks it's the Aza. She's told me to see how I feel later, if I feel ok then I can take one, if not then wait till tomorrow. Either way I have to go down to one tablet (half my dose) and stay there until I see her Wednesday.

Hoping this is just a coincidence and I won't have to come off Aza completely.

Sorry to hear that hope you feel better soon! I have got my date for colonscopy now it's 20th October so I hope yours is soon too

valleysangel92 · Sep 16, 2014

Feeling pretty low today. I was supposed to start my degree this week. Inbox is full of emails about freshers and registration and uniform fittings. Its really hitting hard that I can't go and that it will be a really long time before I can think about going back
.

As well as this, I'm physically pretty poorly still, I keep taking one step forward and two steps back and it's really frustrating. I'm really lost in regard to what to do next, I'm having a hard time separating Aza side effects from fibromyalgia symptoms.

I'm pretty much dealing with a lot of things by myself. My parents are great but they work full time and I go to my appointments on my own, and I don't always know how to talk to them, they have a lot of pressure on them as it is. My boyfriend tries to support me but he's very forgetful and I have to re-explain things a lot and has been really busy lately and gets distracted a lot. Sometimes he tells me he doesn't know if he can give me the support I need, so I often hold back from talking to him about how bad things really are emotionally. I feel like I'm constantly trying to keep everyone else happy and ok. I know I can talk to them, but I also know they have a lot on and can't always be there. I do my best to keep going and be strong like everyone expects but underneath it feels like everything is falling down around me.

Sorry I don't really know where this is going, just had go get it out somewhere.

DJW · Sep 16, 2014

Sorry valleysangel. I can imagine it would be tough seeing those emails. It can be very tough trying to protect those around you from the full measure of what you're going through.

Are you in hospital?

Sending you my continued support.

valleysangel92 · Sep 16, 2014

Yeah you hit the nail on the head there.

I'm not in hospital at the moment, almost had to go to A+E yesterday, pain was worse than anything I've had before and was really struggling to eat or drink because it made the pain worse each time I sipped even water. Thankfully managed it at home with pain relief advice from my nurse. She thinks it was an Aza side effect... So I skipped yesterday's dose and took half dose today as per her instructions. My mum stayed home with me and said she could see my whole body shake with each spasm and my stomach was really swollen. I have an appointment with my nurse tomorrow. Hopefully we will work things out.

UnXmas · Sep 16, 2014

I'm sorry. I feel similar about my parents as you do with your boyfriend I think. My parents are retired, so they have the time to spend with me, and come with me to appointments, but they find it too hard to give much emotional support. It scares them to see me so ill when they know they can't do anything. I also feel like there's only so many crises I can have - it gets too much for them to deal with crisis after crisis. What does help them is knowing I'm getting a lot of help from professionals. It's a relief for them when I'm in hospital, and I think it helps when they come to see doctors with me. For example, today the doctors have been talking about discharging me from hospital, and the gastro in charge asked if he could call my mum - he reassured her that it's safe for me to come home, and that I'll be having nurses visit me at home daily at first.

Maybe your boyfriend would also find it easier if he spoke with your doctors? And if your parents can't come with you to appointments, could your doctors call them? I think it takes some of the emotional burden off the people who care about you if they know there are others in control of your medical care, who know what they are doing.

Writing letters (or sending texts or emails) to your boyfriend and parents may also be something to try; it could help your boyfriend remember things, and you might find it easier to express yourself to your parents that way.

I don't know if it's something you'd consider or not, but maybe a counsellor would be able to help you with the emotional side. I'm sure dealing with such a tough chronic illness would be more than enough reason - you might even be able to get to see someone on the NHS. Personally I've never found that type of thing useful, but I know a lot of people do. It would at least mean you had someone to talk to who you didn't feel you have to worry about upsetting.

nogutsnoglory · Sep 16, 2014

I'm sorry you aren't able to live the life you want at the moment but just know that this doesn't mean that next month or next year it won't be totally different. Yeah, this is going to be a chip on your shoulder for life but hopefully you will be able to manage it and mostly live out your dreams.

valleysangel92 · Sep 16, 2014

UnXmas

Thankyou for responding, I know you're having a tough ride right now. What your talking about does sound similar, it's like there's only so much weight I can put on other people and there's only so much they can take. In some ways I feel like it's easier for me because in a way I have to face up to it and deal with it or it will control me, I'm fighting it by taking my meds and conversing with my doctors and stuff like that, but there's nothing they can really do about it, I don't know if that makes sense?

My boyfriend has been to a couple of appointments with me but none of them were really crohns related. It's hard because he lives 50 miles away and he can't drive. It might be a possibility soon though as he's just finished university so there might be an opportunity before he gets into a job. I think the most difficult thing is he doesn't know what to say to me, he knows he can't fix things and I know he finds that hard.
My parents have sometimes seen my doctors when I've been an inpatient, and they've seen how good some of them are. They understand fairly well and when they can be there they really do support me. I think as well when you say about trusting the people caring for me, that it's an issue for us at times. I've been treated really badly by some doctors and I think at times it makes it harder for the people around me to trust that I really am being looked after.

I've had some counselling in the past ( abusive relationship) and to be honest I didnt get much out of it. I like the letters idea though. That's something I'd try.

I think at the moment it's just a case of everything at once type thing, and the steroids are definitely affecting my mood.

Ngng - Thankyou, I am trying to remember that. I think it's just seeing all the reminders and all my friends graduating is having an effect, but I know it will get better, thankyou.

valleysangel92 · Sep 17, 2014

Well, I'm coming off azathioprine. We're having a 2 week break and then we'll talk about trying mercatopurine. In the mean time my steroids are going to back up to 20mg ( yay) and I'm doubling my pentasa to try and give me some sort of protection from a relapse.

Most of my bloods are ok, phosphate is very slightly low but that's nothing a few glasses of milk won't fix. Inflammation markers are slightly up but not enough to be a huge concern.

RickUK · Sep 17, 2014

valleysangel92 said:
Well, I'm coming off azathioprine. We're having a 2 week break and then we'll talk about trying mercatopurine. In the mean time my steroids are going to back up to 20mg ( yay) and I'm doubling my pentasa to try and give me some sort of protection from a relapse.

Most of my bloods are ok, phosphate is very slightly low but that's nothing a few glasses of milk won't fix. Inflammation markers are slightly up but not enough to be a huge concern.

By inflammation markers do you mean CRP?

valleysangel92 · Sep 17, 2014

No my CRP was alright I think, the one that was high was neutrophils (not sure of spelling) . She said it's common for them to be raised when someone has chronic inflammation or is generally poorly.

valleysangel92 · Sep 17, 2014

Oh and I asked my nurse about the waiting list for the colonoscopy. She says it depends which hospital I've been added to the list for.

Apparently, the hospital that I attend for clinics has around a 3 month list, this is the hospital I would actually prefer to go to as I would actually get to have the procedure done by my consultant. My nurse told me today that he is actually the center of excellence lead for the area with bowel screening Wales which means his procedures are excellent. Even without knowing that though I still would have said the same, my consultant makes me feel so much better about things and I know he'd really look after me. Plus that hospital is much easier to get to by car, just 10-15 mins and parking is free and easy.

If I'm on the waiting list for the other hospital where I have to go when I'm an inpatient and for my scans and coeliac check ups then it's a case of sit tight and wait, apparently they are having a bad time clearing their lists, so 3 months would be lucky there.

UnXmas · Sep 18, 2014

You mean there are actually NHS hospitals with free parking?!

Finding the right surgeon is so important - definitely worth waiting for.

valleysangel92 · Sep 18, 2014

All hospitals in Wales have free parking except the university hospital in Cardiff because they couldn't get out of their contract, the company that runs it won't let them. I couldn't believe the prices in England when I was there briefly for uni. It's insane!

I'm hoping it'll be the gi I've been seeing in clinic recently, but it could be any GI really.

valleysangel92 · Sep 19, 2014

Finally a little good news. My coeliac consultant is happy with me and is confident in the plan me and my new consultant / nurse have set up so he is going to ask that my care be dealt with solely by them - I don't need to see him any more. My coeliac is well controlled and my IBD team is more than able to look after it. He's given me a form to get some bloods done but says they can just be done when I next have crohns bloods as I only had a blood draw 2 days ago and he thinks I deserve a break. So, my care is being condensed and no more going between consultants like it's pass the parcel, which will make things so much easier in terms of who to contact when I have issues and when I get admitted for anything. Also means my appointments are all going to be at the nicer hospital, which is closer to my home, although 2 bus rides it involves less walking and is more comfortable. I was only seeing my coeliac consultant once a year anyway, but having 2 consultants causes chaos when you're admitted, they never know which one to call and my GP would always get horribly confused.

I'm very happy with my current IBD team and have no concerns at all about being left fully in their care. They are worth their weight in gold to me for the care they have given me since June.
It's a small victory, but it's still a win. Yay.

valleysangel92 · Sep 30, 2014

Well tomorrow I go back to see my nurse and I'll have to tell them my decision regarding 6mp.

I think I'm going to be giving it a go, I'm not really sure what my other options would be but I think the most likely would be methotrexate and I think I prefer 6mp to that.

At the moment I'm quite frustrated. I know there are plenty of people who have been ok on 6mp after having problems with Aza, but I also know it's going to be a waiting game to find out if that's the case for me or if it even controls my crohns. I know this is something we all have to deal with and I know that compared to some I have nothing to complain about but the constant waiting and holds up is dragging me down. My life has been on constant hold since I left college (sort of like high school), that was three years ago and I've literally got nowhere since.

I think there's also the aspect of a domino effect. I started getting sick at 12 and haven't had a single day where I can remember being totally pain free / well since and all that time there have been constant decisions for me to make.

My family are lovely and my boyfriend really tries to support me, but a lot of the time they don't understand what's going on, they aren't medically minded and struggle to remember facts about the medications etc. It's hard to try and have someone help with a decision when you have to re-explain everything every time you want to talk about it. I guess because I've always been responsible for my health and appointments,and because the descions regarding my crohns surgery and other surgery I need have been down to me, it's easy for the people around to forget that at the end of the day, I am still only 21 and these are massive choices. A lot of the time it's down to me to have the answers and know what's happening. When anyone else is unsure they ask me, so I don't really have anywhere to go when I'm not sure, I'm too busy trying to reassure everyone else. That's why this place is such a blessing.

I know I will get through this. I know this isn't forever and eventually things will get back on track and I'll be able to work or study. I know there will be a time where I get a break from always having to make these huge choices, but that time feels a long way off, especially due to the other surgery and conditions I have.

I know that there are many going through the same and far worse but I had to get this out. Thanks anyone that reads and /or responds.

Right. Rant over. Socks being pulled up.

nogutsnoglory · Sep 30, 2014

It's not a fun game or path to be on valley and I truly hope that it will an amazing change for you so you can get on with your life. You have a strong positive attitude which is fantastic and at the end of the day all we can really do is take the hits and march forward.

Muppetgirl · Sep 30, 2014

I'm sorry it's all mounting up at the moment. I can relate to those moments when you just want a break. I'm there myself right now. From reading your posts I think you have a lot going for you. You are always thoughtful and you are there for others. You will find an opportunity to offer what you have.

I know what you mean about having to reexplain, even to those who care a lot about you and try to understand. In some ways you can be more taken aback by those people forgetting/not understanding. Personally I think its because it can make us feel incredibly alone with it. This disease malarky can feel very isolating. But you know, you are not alone, there will always be someone who gets it and plenty who care.

With your treatment you can only ever make the best decision for you at the time. I once read a quote 'all important decisions must be made on the basis of insufficient data', so true! You are doing the best you can and that is good enough. I hope things go well tomorrow and good luck with the treatment.

DJW · Sep 30, 2014

Sending you my support.

valleysangel92 · Oct 1, 2014

Nogutsnoglory, thankyou for your support and your kind comments. I needed that.

Muppet girl - again, thankyou for your kind comments and support. I'm very grateful to have this place where I can let my feelings out and share my fears with others who know how it feels and who understand what I'm dealing with.

Djw - Thankyou for your continuing support.

Today went well. We are starting 6mp very slowly. I'm going to work towards a dose of 75 mg, starting at 25 mg for one month and going from there. If I experience any pain like what I had before I have to stop the 6 mp instantly. I'll be reviewed in 2 weeks, since my liver and kidneys were ok on the Aza, my nurse feels she can allow me a bit more of a break between visits so fortnightly is ok.

I have some buscopan to help me with the spasms I get.

My nurse is going to write me a letter to support my claim for Esa. This will be sent in place of a sick note from a doctor. Hopefully it will be accepted and will mean I won't have to contact my GP every month to try and get a new note which will be far less stressful as it's a different GP every time and some of them make me feel horrid for asking. I can tell they think I'm lazy and milking my diagnosis. Thankfully not all my doctors at my GPs are like that, but you never know who you'll get until your there. My consultant and IBD nurse are amazingly supportive and sympathetic though, which is very refreshing.
So, I shouldn't have to worry about looking for work for a little while. Although I really wish I could work, being in the house is driving me nuts, I'm grateful to be in a position where that pressure is gone for now. As much as I hate it, I know I am not in a place where working is an option right now, and being forced to do so would significantly damage my health, so it's great to have such an empathetic team who know how debilitating this condition is and will do anything they can to help.

valleysangel92 · Oct 15, 2014

So I had another follow up today. We have a change of plan.. Because I don't seem to be getting any side effects but I'm still getting quite a lot of pain we are going to try upping the 6 mp now instead of waiting. So I'm going up to 50 mg. I'm still tapering my steroids and keeping up with the pentasa.

My ferritin is low ( normal range is 10-30 mine is 7) so we're retesting that and I need to eat more fish and eggs, my haemoglobin is ok at the moment so we're going to see how my iron looks in the new tests and then see where we go from there. I have tried many forms of oral iron and have never been able to tolerate them, they send my stomach crazy, so it might be injections /an infusion.

I'm going to see her again in 3 weeks this time due to being away.

Catherine · Oct 16, 2014

Here hoping the increase dose of 6mp work for you.

valleysangel92 · Oct 17, 2014

Thankyou.

Today I finally got a letter to say I could schedule my scope. I called and it's booked for the 10 th November. Just have to wait for the confirmation and the prep to come through the post.

The good thing is that it appears it will be done at the local hospital, which I think means I will get my GI doing it not some random doctor like last time, which is reassuring as I've been told that my new GI is actually a clinical excellence guide and does the cancer screening Wales stuff. So in good hands, which allows me to hope that this one won't be as painful as the last.

StarGirrrrl · Oct 17, 2014

Glad you finally got some news about your scope

Muppetgirl · Oct 17, 2014

Yay that you finally have a date! Fingers crossed it will be kinder than your last one...sounds like with this new GI there's a good chance it will be. Lets us know how you get on.

valleysangel92 · Oct 18, 2014

Thanks both!

Muppet girl I sure hope so! My first one was horrible, very painful and can remember the whole thing ( although that's pretty common in the UK anyway). But have heard really good things about where I'm getting it this time, and I know if i get my GI hes already said I can ask for more pain relief. Plus this time I hopefully won't have so much narrowing and I'll have less bowel that will make things easier.

Muppetgirl · Oct 19, 2014

Ugh it really is awful when they go badly. I think them being sensible and responsive to your pain etc are two of the most important things and its sounds like you'd get that with him, and he knows your history properly, which is much better than a stranger scanning your notes 5 mins before you get to theatre! Could you find out beforehand if it will be him?

valleysangel92 · Oct 21, 2014

In fairness, the doctors that did my first scope were good but I was full of ulcers and I had an impassable stricture, I didn't realize at the time I could ask for more pain relief and tried to just stick with it (I was 19). At least they got that it was impassable and didn't try to force it (another doctor offered to try, the one doing the scope said no way). Unfortunately they always say they can't guarantee what doctor you will get, I'm assuming that my doc isn't the only one that does scopes at this hospital, so there is still a chance of there being someone else. The hospital itself is a clinical excellence center for scopes anyway, so that's reassuring too.

fozheart · Oct 22, 2014

I am sorry that I have missed seeing your thread the last few weeks- you go through more than anyone I know, in such a short time! You sure do have a lot to keep straight, and I do wish that you had someone right there that you could fall back on, for the type or support that you are not getting, and to help with some of the decisions you have to make. (even though you do have a great family.) Yay for the scope finally being scheduled! I wonder why they do not make you as comfortable for it, as they do here....I guess the less drugs, the better?

Is the pain that you have been having so badly, the ripping pain that you had mentioned a while ago any better? I am hoping that it has lessened a bit, being off the Aza.

You do carry so much- and I do pray that you can get some answers and relief soon. University will happen some day, and when it does, you are going to make your mark and fly high!

Hang in there.

valleysangel92 · Oct 22, 2014

You've had plenty to deal with yourself, please don't feel bad! You've always been a great support to me. I wish that too sometimes, I'm very grateful for what I do have but sometimes more understanding would be great, on the other hand to understand they would probably need to go through what they do, so from that perspe I'm really glad they don't. I think it's a mixture of things, they like you to be able to respond to commands such a as rolling over during the scope, the lower risk of lighter sedation, quicker recovery time (no clogging up precious beds) , less chance of needing to be admitted after the scope. Although my letter and information booklet came through today and I'm sure that some of the information is different. It is a different hospital so it might be a different policy. I'm pretty sure my last one said you would get 'concious sedation ' this one says 'cooperative sedation' it also says that the sedation means it is very unlikely you will remember any of the procedure, where as the last one only said you might not remember it. So it sounds like this hospital might give slightly more? I'm also wondering if I have more of a tolerance to the sedative because of the fibromyalgia, which wasn't diagnosed when I had my last one, as I have heard of it contributing to altered effects of sedatives and some analgesics. The letter that came with the booklet /prep also states my GIs name, which is something that didn't happen last time. The consent form still says they can't garuntee a specific person but generally if you get a letter with a specific consultants name then you get that consultant.

Yes that pain is thankfully gone, I haven't had a repeat of it and hopefully won't again! I still have my more usual crohns pain, but even that has eased a little, just need to keep making it improve and get a handle on my joints.

Thankyou so much, I know that when that time comes I will appreciate it so much more and I will definitely get the best out of it that I can.

Stoner · Oct 22, 2014

I can't believe what you people go through in the UK to get a colonoscopy. Here in the US they schedule as you leave the doctor and usually have an appointment the following week. Things are changing in leaps and bounds with our current President. May be in your position before long. Two things came to mind when I read your post Valley. First off, there is a correllation with your flare-ups and trying to get accepted into the University. It's called stress. My son went into a major flare-up the first part of the year due to finishing up his masters, third baby on the way, building bedrooms to house the first two kids, and shopping for a bigger car to transport three kids. Oh and his wife was finishing up her masters at the same time. STRESS!
Second thing, are you sure you want to go into nursing or child care with an auto-immune disease? You'll be facing lots of germs in both cases. I go weeks without seeing my grandkids because they are always sick with something and I wear a mask to the hospital if I have to go in for testing during flu season. Call me a germaphobe, but it comes with the territory.

valleysangel92 · Oct 22, 2014

Hi there

Yes trying to get in for a scope is a bit of a nightmare! I was on the urgent list in the faster hospital so I dread to think how long others are being made to wait. I have heard stories of people in some parts of the UK being made to wait up to 20 months.

I can see what your saying, but my symptoms were already active when I first went to university and had been a long time. The stress of moving to a new place and starting a hectic course probably made things worse and then I had to leave because I was just too sick. The year after, I didn't have to reapply Because I'd left on medical grounds, my crohns had been treated with surgery but they felt I wasn't recovered enough from the surgery. The university again granted me a place without application for this year and until I began to flare again I honestly thought I would get it as I was getting my other issues controlled and felt generally good. Unfortunately, I wasn't on maintenance medication for the crohns and I wasn't really getting the monitoring I needed. While the stress of looking for a place to live probably had some contribution to my flare, I was generally quite stress free and think that if my crohns had been better monitored or I'd been on a maintenance medication then the flare would of been far less aggressive.

I am definitely sure that I want to work with children either as a nurse or in a care/education role. It's what I've always wanted to do and I honestly can't see myself being as happy in any other job. To be honest, even working in education instead is a compromise, but one I'd be comfortable with. I already spend a lot of time around children, my sisters both have children and I don't really puck much up off them. My mum works as a teaching assistant with 3-6 year olds and carries lots of bugs home from them and again I don't pick anything up. I completed placements in a nursing home and schools and although I wasn't diagnosed with crohns I had symptoms and I already had coeliac diagnosed which is also autoimmune. I have discussed with my nurse at length if working with children is a viable option while taking immunosuppressants and she has told me it's ok provided I make sure I get my flu jab ( I do anyway, I'm asthmatic) and take extra care with chicken pox. Nursing is something I would have to talk to them about again when my health is stable and then they can advise. I do know there are people who work in health care while on immunosuppressants and as long as they are sensible it's not always an issue. I am very aware that my health has to come first and am willing to compromise to make sure it's protected but I don't think I need to go as far as writing off work with children completely, I mean we risk getting sick every time we leave the house, and I'm dependant on buses at the moment, so I'm travelling on germ factories all the time and so far my immune system seems to be holding its own ok.

Thankyou for your response

valleysangel92 · Oct 22, 2014

Hi there

Yes trying to get in for a scope is a bit of a nightmare! I was on the urgent list in the faster hospital so I dread to think how long others are being made to wait. I have heard stories of people in some parts of the UK being made to wait up to 20 months.

I can see what your saying, but my symptoms were already active when I first went to university and had been a long time. The stress of moving to a new place and starting a hectic course probably made things worse and then I had to leave because I was just too sick. The year after, I didn't have to reapply Because I'd left on medical grounds, my crohns had been treated with surgery but they felt I wasn't recovered enough from the surgery. The university again granted me a place without application for this year and until I began to flare again I honestly thought I would get it as I was getting my other issues controlled and felt generally good. Unfortunately, I wasn't on maintenance medication for the crohns and I wasn't really getting the monitoring I needed. While the stress of looking for a place to live probably had some contribution to my flare, I was generally quite stress free and think that if my crohns had been better monitored or I'd been on a maintenance medication then the flare would of been far less aggressive.

I am definitely sure that I want to work with children either as a nurse or in a care/education role. It's what I've always wanted to do and I honestly can't see myself being as happy in any other job. To be honest, even working in education instead is a compromise, but one I'd be comfortable with. I already spend a lot of time around children, my sisters both have children and I don't really puck much up off them. My mum works as a teaching assistant with 3-6 year olds and carries lots of bugs home from them and again I don't pick anything up. I completed placements in a nursing home and schools and although I wasn't diagnosed with crohns I had symptoms and I already had coeliac diagnosed which is also autoimmune. I have discussed with my nurse at length if working with children is a viable option while taking immunosuppressants and she has told me it's ok provided I make sure I get my flu jab ( I do anyway, I'm asthmatic) and take extra care with chicken pox. Nursing is something I would have to talk to them about again when my health is stable and then they can advise. I do know there are people who work in health care while on immunosuppressants and as long as they are sensible it's not always an issue. I am very aware that my health has to come first and am willing to compromise to make sure it's protected but I don't think I need to go as far as writing off work with children completely, I mean we risk getting sick every time we leave the house, and I'm dependant on buses at the moment, so I'm travelling on germ factories all the time and so far my immune system seems to be holding its own ok.

Thankyou for your response

StarGirrrrl · Oct 22, 2014

I got my urgent scope (undiagnosed but urgent due to a previous hospitalisation for severe life threatening anaemia cause unknown) in 15 days, could have had one in 11 if i'd been able to make the appointment. Should have been able to book when I left the Dr but staff were out on lunch.

I live in England

So it can happen in the UK like it does in the US. There are individual NHS trusts in the UK and valleysangel is in Wales which is different again. It varies everywhere. Some are better (like mine) and some worse like VA's.

UnXmas · Oct 23, 2014

It's certainly possible to get short waiting times for tests on the NHS - I've found there to be huge variation. Valleysangel - have you thought about asking for an in-patient admission for testing? I realise going into hospital is the last thing you probably want to do, but when I've been in-patient, I've had tests booked and done within a couple of days, even when there was no urgency at all. I was in-patient to gain weight for several weeks this past summer, and while there had an endoscopy and MRI, with no waiting at all, and no urgent need to get the tests done whatsoever. Things just seem to happen immediately when you're in-patient.

Regarding working when you have a chronic illness, perhaps my advice is completely wrong, but I see no reason why you shouldn't work with children. Plenty of parents have Crohn's, and even if they are not working with children themselves, they will be taking their own children to school, to other kids' houses, to doctor's appointments - i.e. they'll be mixing with many children. Obviously you don't take unnecessary risks, you minimise the amount you mix with others when you have a particular illness that can be spread, but that applies to everyone, Crohn's or not. Nursing I'd imagine would be more risky, not just for the potential to get sick from others, but from the physical demands of the work. But you'll know what you're capable of.

valleysangel92 · Oct 23, 2014

Thanks Stargirrrrl

Hi UnXmas. I have thought about that, there's been a few time's I've even considered just going to A&E because I know they'd admit me, but unfortunately being admitted like that means I'd get whatever gastro team happens to be on call, so it might not be mine, and I'd not get my GI doing the tests since he does his testing at the local hospital, which doesn't do acute admissions, and the A&E there can't handle anything more than cuts and bruises. Even if I got admitted through my GI I'd have to go to the other hospital, which is apparently having a bed crisis ( My uncle is a senior OT and leads a team, he has meetings with the CEO all the time and he's told me to avoid that hospital for as long as I can) so the chance of them agreeing to admit me is really slim. Even when I was an in patient in June they said it was unlikely they'd do a scope while I was in. It took a week to just get MRI results, which was a one line report.

Thanks, I would of course always make sure I took sensible precautions, and most schools and nurseries have rules about accepting children with any sort of virus to minimize spread. Nursing wise I will revisit when I am stronger, from a Crohn's point of view I know of a number of people who work as a nurse with crohn's, I have thought about things like being a school nurse, so I'd have less hours and a slightly less physically demanding role, being part time or working for an agency where I'd be able to decline shifts if I didn't feel well enough. I have more concerns about the physical demands with the fibromyalgia/ crohns related joint pains, I feel these have the potential to cause difficulty with the physicality of the job, but I'm in early days with this and I know that I will have more control over it than I do now, so when that happens I will be better placed to make that choice. Thankyou for your support .

Muppetgirl · Oct 25, 2014

I have a friend working in healthcare who has crohns and who is on immunosupressants. I'm sure there are others in her position. At present this has not caused her specific issues. Like you say there are plenty of adjustments you can make within the particular post you have without adjusting the overall dream. Personally I think your experience on the 'other side' of the healthcare system means you have something that cannot be taught and is very valuable. If it's what you decide to do when the time is right, then I wish you the very best with it.

Muppetgirl · Oct 27, 2014

How'd it go with the endocrinologist?

my little penguin · Oct 27, 2014

Sending hugs
As far as childcare field and immunosuppressants
My kiddo wasn't teaching but was on imunnosuppresants by at age 7 and biologics by age 8.
Plenty of exposure to elementary school germs the last three years .
The number of days he missed school for a cold cough etc...
Was by far less than my other kiddo

fozheart · Oct 27, 2014

Hi! I am also waiting to hear how it went with the endrocrinologist! I forgot what this doctor does, specifically. How do YOU keep track of everything with all of you your specialsists? Sending good thoughts and hugs.!

valleysangel92 · Oct 29, 2014

Thanks for the support regarding childcare work everyone, really means a lot to have so much support

Regarding the endocrinologist it was awful. The consultant was talking to me as if I was a five year old with hearing loss. He came across as very confrontational and as soon as I was in the room he started questioning me on why I wasnt taking alendronic acid, which apparently I should of been, even though at my last endocrinology appointment (with HIS registra) I was told not to start taking it because they wanted to see what rheumatology found first (fibro). I told him id been advised not to take it and he still told me off. Then he started saying that the alendronic would lower my calcium, which he later changed to saying that it was nothing to do with calcium (I already knew it wasn't) and it's actually supposed to protect my bones.

He then didn't even give me a script for the meds saying he didn't know if it was ok for me to have them because of the crohns meds I take (which I told him about at the start of the consultation) so he wants to talk to my IBD team first, and then apparently he will ask my GP to prescribe the alendronic if it's ok. Is it me, or would it of been simpler to give me the script and then have me ask my nurse when I see her next week, so that if it was ok I'd be able to get it and start taking it? Part of the reason he was so adamant I should be taking these meds is that I'm on steroids, which I lower to 5 mg tomorrow.. By the time my IBD team get his letter, then write back to him and he reads it, then writes to my GP and they read it and send me an appointment and give me the script, I'll be off the steroids anyway.

Fozheart - they are supposed to take care of things like hormone and enzyme release and keeping the body's internal state constant. They look after things like diabetes etc. In my case, I was referred to them because I have to much calcium in my blood and osteopenia. But the consultant I saw wasn't interested in my calcium.as he says it's harmless ( runs in my family) and wasn't that interested in the osteopenia either. Infact, he's discharged me from his care. So essentially, he's put me on medication and then left me to deal with it myself.

His bedside manner was awful too. He spent most of the consultant with his voice raised and his eyes on the floor.

As far as keeping track of everyone, I have note books that I write my questions in then I fill in the answers, I keep it all together with any letters and reports from scopes etc so I have easy access to everything and then if I have an appointment with someone I've not seen for a while I'll read over what I've got from before, it seems to work so far.

Muppetgirl · Oct 29, 2014

Oh no! Just as things go well with one department... :ywow:

I'm sorry he didn't treat you well. It doesn't take much to be kind and to listen. I agree it would have been simpler & quicker to give you the script. :yrolleyes:

Alendronic has some pretty unusual side effects, which as I understand are not common but are quite off putting. I was supposed to be on it for osteopenia/osteoporosis, however it just sat in my draw because I was too scared of it! I was prescribed calcium (which I'm guessing would make no sense in your case?) but even a single half dose sent me into awful D and I have enough of that already, so the thought of possible stomach issues with alendronic just wasn't okay with me. I may have to go back to it at some point though. I'd be interested if it can be okay for people with inflammation of the bowel. How do you feel about trying it? Is your osteopenia otherwise untreated? I agree somebody should monitor your treatment with it. I think it may even be a stipulation, I'd have to check. Maybe you rhematologist would be willing to? I'm under rheumatology for mine.

valleysangel92 · Oct 31, 2014

It seems to me that far too many of those in the medical professions are not blessed with the gift of common sense.

I'm not allowed to take calcium supplements, if I was then things would be much simpler. Unfortunately it's too risky as my calcium frequently sits at 2.8-2.9 and here they class 3.0+ as an emergency.

To be honest I don't feel I know enough about it to give a proper opinion. I have seen one of the medication leaflets for it but that was about 2 years ago. The endo I saw made no attempt to explain the medication or the risks and side effects or to even instruct me on the best way to take it ( if I remember correctly it has to be used in quite a specific way?) . I will be seeing my IBD nurse on Wednesday so I will be asking her for her opinion and going off that, I have much greater trust in her than the endo.

I don't actually have a rheumatologist now. I was under one very briefly to check out my joint symptoms then when I was diagnosed with fibromyalgia my care went back to my GP.. I would need a new referral to rheumatology before I could see one, but I wouldn't get one as I have no new symptoms etc and they don't really use rheumatologists for fibro in my area ( the UK is broken up into different health trusts, each one allocates it's own resources) .

Muppetgirl · Oct 31, 2014

He does sound a bit all over the place. I hope the discussion with your nurse is more productive. Yeah according to the instructions it has to be taken on an empty stomach (empty of fluids as well as food) and then you must stay upright for at least half and hour and not lie down at all until you've eaten. There is a caution to take 'special care' if you have digestive problems, and digestive problems are a common side effect. The jaw stuff is rare but I seem to recall you were/are having some dental surgery? You have to tell your dentist if you are on it and some dentists will not treat those who are. I know different areas are different but for what its worth, I am under rheumatology for the bone loss alone (though I am reviewed infrequently). I think its partly because of being on the young side for it. I hope you find something that works for it.

UnXmas · Nov 1, 2014

I've had osteoporosis for a long time, but doctors have always told me that I can't take alendronic due to its effects on the digestive system. I think this was because I have reflux and heartburn rather than Crohn's or any problems lower in the digestive tract.

Muppetgirl · Nov 1, 2014

It's interesting you were told to avoid it Unxmas. It was partly the upper digestive side that put me off. I wasn't convinced it'd clear my stomach and not come back up either. The leaflet lists common side effects as 'stomach pain, constipation, D, flatulence, esophageal ulcer, acid regugitation, swollen abdomen, swallowing difficulties and digestive problems'- whatever that's supposed to mean, so I guess it can cause problems just about anywhere in the digestive tract.

valleysangel92 · Nov 2, 2014

Hm I'm liking the sound of this less and less. Usually I would ask my doctors lots of questions and make sure I know everything I can about a medication before I go anywhere near it.

I'm having reconstructive jaw surgery. I currently have braces to get my teeth in the right places and then when they are aligned enough I will have surgery where they will break my jaws, move them and then fix them with plates and screws. I have been waiting for this treatment since I was 17, there is no way I am doing anything to jeopardise it now! So I think I will be holding off until I see my orthodontist in December (if gastro approves it).

The gastro side effects concern me. This may of been why I wasnt keen on it before (I knew I didn't like something about the med, couldn't remember what).

I do have issues with heartburn and reflux, I take omeprazole daily for it. And sometimes I have issues swallowing where stuff gets stuck in my throat and I can't get it down..

I told the endo I was on omeprazole and on metaclopramide (an anti sickness) and all he did was look blank. I really don't think he'd even looked at my notes.

I'm going to make a note of all these things to ask my nurse about.

Thankyou both!

DustyKat · Nov 2, 2014

There is a 6 monthly SC injection available called Prolia that is largely replacing alendronic in Australia, for the very reasons you are speaking of, the undesirable side effects and precautions that alendronic has.

I don’t know what the restrictions would be in the UK, as in age etc (I imagine it is targeted at the post menopausal demographic) but it would be worth asking about if you have a diagnosis of Osteoporosis.

Dusty. xxx

Muppetgirl · Nov 2, 2014

It is sounding like this might be a non starter for you. Although it is a rare effect, the issue with the jaw is essentially the bone dying (osteonecrosis). With your description of the surgery and that it deals with the jaw itself, it would be surprising if this was going to be ok. The way I understand it dental surgery increases the risk. It's awful that he has not considered all your health issues, he should have discussed the risks with you. I know all drugs have a long list of potential effects but the digestive ones are commonplace, and there are serious digestive effects listed under uncommon as well. I'm sorry it has been such a rubbish experience for you. I do hope you find an alternative treatment though. Perhaps the one Dusty has suggested. I think I will look into that too...

valleysangel92 · Nov 3, 2014

I think I might of heard something about those injections Dusty, I'll have to look them up and see what I can find out. They indicate that the alendronic is supposed to be for those who are post menopausal as well I think, so I might have a chance at still getting the injections if they are available here. I'd just have to work out who to ask, since the only people taking interest in me are gastro at the moment. Thanks Dusty!

Muppetgirl - I'm thinking the same, I know that all of the medications we use have risks and that every medication has the potential for side effects and causing damage to the body, however the risks are usually proportional to the condition that they are treating. At the moment I have osteopenia, not osteoporosis, and while I know that prevention is best, I don't feel like this medication is proportional to the risks of not taking it. There are surely other options available, there must be something that they use for the people who cant use this medication, I've heard of injections and infusions being given to those with ostoporosis, which is more time consuming and probably more expensive, but possibly a better option for patients like us. To be honest, he probably didn't even realize I have so much other stuff going on, I could tell he'd barely skimmed my notes, that being said I can't see how he'd manage to miss my braces, they are silver and blue ..

Muppetgirl · Nov 4, 2014

I couldn't agree more. Both Alendronics common and more unusual effects are unlikely to tip the balance in favour of taking it, upright or not! Like you say there are other drugs, though I don't think I'd heard of the injections before. I seem to recall the others are more expensive, which might have something to do with it. Let us know how you get on.

valleysangel92 · Nov 5, 2014

I saw my nurse today. She has no problem with me being on alendronic, but she hasn't received anything from endocrinology about it yet, so we're waiting for them to get in touch with her/my consultant before they can do anything. I mentioned my jaw surgery to her and she said that she thinks we should wait until I've seen my orthodontist and spoken to them , she says there is no hurry for me to start it and that it wouldn't be an issue if we had to wait until after my surgery for me to start it. We are ordering another DEXA scan to see if the osteopenia has progressed any further, the waiting list is 3-6 months so by the time it comes through it will be about right for when I'm due.

Currently my hemoglobin is normal, my iron is the bottom end of normal (10.0) my ferritin is 6 (meant to be 15) so I need to eat as much iron rich food as I can (isn't that fun with crohns?) and my white cell count is still elevated so theres still something simmering, I'm hoping this means that there will be something visible on my scope and it won't be worthless from the months of steroids (now down to 5mg... yay! )

My liver and kidney tests are fine so we are upping my 6MP to 75mg now. This will be my full dose for now, we may need to up to 100mg in the future but at the moment 75 should be enough. I'm continuing my steroid taper and we will have a follow up in 2 weeks. Hopefully after that we will be able to space things out a bit more and I'll have less frequent appointments.

fozheart · Nov 5, 2014

I have been off of the forum for a while, and am going through your thread to refresh my memory. I am having a hard time taking all of this in- but I am thinking about you, and hoping... and praying!

Muppetgirl · Nov 6, 2014

Glad to hear they will review with the dexa scan...at least you will know where you're at before reaching a decision.

I hope the scope is indeed helpful...though obviously hope for good news...it must be coming up soon?

valleysangel92 · Nov 8, 2014

I have my scope on Monday afternoon, dreading the prep!

I missed a call from my nurse on Thursday, but we didn't realise until yesterday afternoon when mum checked the house phone, she'd left a message asking me to call back and sent an email (again I didn't realise, my boyfriend had been with me so I hadn't been on the computer) . I phoned back but must of missed her, so checked my emails and she said my white blood cell count had dropped to 2.6 ( normal is over 4). On the test 3 weeks ago it had been 12.1 so that's a fairly rapid drop. She left instructions to stop my 6mp and I'll need to have bloods next week, I emailed her back and got an automatic response saying she's out of the office until Tuesday and she will reply to all emails then. So I will know more then. One day something will be straight forward -_-.

fozheart · Nov 8, 2014

Oh sweetie- be careful, especially around people with colds, etc.! Good luck with the scope!

valleysangel92 · Nov 10, 2014

Well that was absolutely awful. I ended up having to have 2 scopes back to back.

I barely felt any effect from the sedative or painkillers apart from maybe a tiny bit spaced out.

They decided to use a peads scope for me because I'm so small. But it backfired badly. They got all the way to the ceacum and were ready to take some biopsies when the scope wash failed and they couldn't see what they were doing. At this point I was in a lot of pain and felt like I had a knife in me not a camera. They had to stop because they couldn't continue safely.

They gave me a few mins and then explained what had happened and said I had two options. Either leave it and probably have to come back at a later date, or try again with a different scope. Well I wasn't going through all that for nothing so I allowed them to try again using an adult scope. The second time was even more painful, haven't felt pain like it since I had my surgery.

To top it all off, it looked like things were normal. So I'm not even any clearer on what's actually going on. We know I've had inflammation because it's been showing in my bloods and the fecal cal but now we have a guessing game on where that inflammation is. They did manage to get biopsies the second time, so I'm still hoping they will show something useful so that going through it again wasnt a total waste.

Stomach currently feels like it's in tatters, going to be sore for a good few days I think.

My current situation

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