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08-21-2014, 02:40 PM   #1
valleysangel92
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My current situation

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As a result of this flare, I have been declared unfit to take up my place at university and therefore my place will be withdrawn.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.
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
08-21-2014, 03:44 PM   #2
Cross-stitch gal
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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.
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08-21-2014, 04:07 PM   #3
DJW
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I'm so sorry to hear the news. Is their a chance to reapply in a year?
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08-21-2014, 04:10 PM   #4
valleysangel92
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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.
08-21-2014, 04:17 PM   #5
DJW
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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.
08-21-2014, 04:19 PM   #6
valleysangel92
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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
08-21-2014, 04:53 PM   #7
CrohnsChicago
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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.

Here's hoping you have a more speedy recovery ahead!
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Crohn's-Colitis May 2012
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08-21-2014, 05:55 PM   #8
gotumtum
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Hey Valleys Angel - Is there any way you can study by distance learning? - I do and could not have studied the 'normal' way
08-21-2014, 05:58 PM   #9
valleysangel92
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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)
08-21-2014, 08:17 PM   #10
gotumtum
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Bother and hugs!
08-24-2014, 03:13 PM   #11
valleysangel92
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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.

Last edited by valleysangel92; 08-24-2014 at 03:47 PM.
08-25-2014, 09:30 AM   #12
UnXmas
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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.
08-25-2014, 09:40 AM   #13
valleysangel92
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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.
08-25-2014, 12:13 PM   #14
Jay Woodman
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Thinking of you & hoping you will be doing much better soon : )
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08-26-2014, 08:28 AM   #15
valleysangel92
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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.
08-26-2014, 01:27 PM   #16
Cross-stitch gal
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Hopefully this will work out for you. Glad to see you leaving the steroids though...
08-26-2014, 01:31 PM   #17
valleysangel92
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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.
08-26-2014, 01:52 PM   #18
Cross-stitch gal
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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...
08-26-2014, 02:42 PM   #19
StarGirrrrl
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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?
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2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
CRP 20-36 2006-now. C3/C4 inflammation markers huge,
2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
Caught by pure chance!
Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!
08-26-2014, 02:53 PM   #20
valleysangel92
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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.
08-26-2014, 03:14 PM   #21
valleysangel92
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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.
08-27-2014, 04:48 AM   #22
StarGirrrrl
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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.
09-01-2014, 04:15 PM   #23
valleysangel92
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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.
09-01-2014, 05:46 PM   #24
StarGirrrrl
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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!

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

09-01-2014, 05:52 PM   #25
valleysangel92
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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.
09-02-2014, 05:45 PM   #26
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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.
09-03-2014, 12:28 PM   #27
valleysangel92
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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.
09-03-2014, 06:45 PM   #28
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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.
09-04-2014, 11:14 AM   #29
valleysangel92
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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?

Last edited by valleysangel92; 09-04-2014 at 12:14 PM.
09-04-2014, 03:19 PM   #30
StarGirrrrl
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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!
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