My current situation

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

I have appt with my gastro girl tomorrow. When I got down to 10 mg of steroids, back came the poops - not as bad as before, but stilll. Also, much to my unhappiness, it is clear that milk and perhaps other dairy is a problem, along with chili and perhaps curry, of course, the latter is a huge fav. I also have an eye problem and a minor wound that won't heal. IKNOW this is small potatoes compared to you guys, but i am a new diagnosis and I'm 70 and today it all just seems so unfair., because i've been healthy. the eye freaks me out because I spent months twice with my nose on my knees, healing from a retinal detachment. Okay, enough. Valley, you're in my thought and prayer.s m
 
I understand how you feel. I've been on a merry go round since diagnosis with steroids. I've spent since June last year trying to get off them and haven't lasted more than a few weeks at a time and I keep ending up back at square one relapsing. So I really do understand how you feel.
 
Just a little update here for those who have missed my other post.

I just got home this afternoon after being in hospital for just over a week. I went to my GP as I was in horrible pain and my IBD nurse wasn't there. They did a quick check over and sent me off to the hospital.

I had a day of bowel rest with just clear fluids and IVs and then just ate small bits.

I did a pill cam on Tuesday, was pretty easy except that the prep I had to do on Monday made me violently sick and dehydrate, so ended up on fluids again.

I've been put on a modulen diet (although I don't even have enough to last a week, so I'll have to try and get a rapid appointment at the GP and hope they'll give me a prescription and hope the pharmacy orders it fast.

I have an appointment with my IBD nurse on the 8 th of April when I will hopefully get my pill cam results. Waiting is always the worst bit but I am so glad to be home with my own bed, hot tea and coffee (it's always luke warm in hospital) and lots of IBD and coeliac safe food that I can have while sorting out all the modulen I need and then as a supplement alongside.
 
you could ask your pharmacy to order the Modulen right now even if your prescription is not ready to win a day or 2. they'll trust you you'll come pick it up along with the prescription.
You are not curious to try a 100% EEN trial? Or have you tried it before?
 
I can't ask the pharmacy without a written prescription, it just doesn't work like that here unfortunately.

To be honest, I think 100% EEN is great if you can manage it, but that's yet to be discovered. It is all dependent on how much of the modulen I can manage to get down a day, if I can't get to the full amount then I will need to supplement with food or I will keep loosing weight. As it is, the maximum I've been written up is 1500 cals a day, which is only just enough to maintain weight and really I need to put it on. If I cope well with the modulen, I will have little to no 'normal' food, so I will try it as 100% EEN. But my consultant wants me to have room to tweak it if I'm struggling with it or its casing me problems.
 
Ive discover the joy of gaining weight since a few weeks with almond butter. Really easy to have large quantity and easy to digest it as well for me.
good luck with Modulen and treatment.
 
Hey up Valleys...how are you doing now? I'm sorry you have been so unwell but you did well to get some decent hospital treatment...hopefully that'll be the silver lining to your cloud :thumleft:
 
Thankyou, I'm still in pain, I managed to get some more pain meds off one of my GPs yesterday though so that should help.

I also tried to sort my modulen out.. The hospital only gave me 3 and a half tins on discharge, and I need nearly a full tin every day.. The GP had never even heard of modulen, but because I had my discharge things with me it wasn't a problem. The only issue is that he only prescribed 400 grams... Which is one tin (In fairness to him, it says one tin on the letter the hospital gave with my meds, but that was because it's all the pharmacy had ) and that's also how he's set the repeat up. The pharmacy didn't have any modulen in stock either. So I'm still stuck with only a small amount and I've not actually been able to start the diet because I'd run out before I'd get more -_- and of course not starting the diet means I've basically not made any progress since discharge.

My dietitian was supposed to call on Monday and she didnt, she was also supposed to fax my doctors with the correct prescribing amounts and after yesterday's confusion I can tell she didn't do that either.

Luckily, I have an appointment with my IBD on Wednesday who is far more reliable. Hopefully she will sort out a proper prescription and be able to instruct my GP on prescribing it correctly.
 
Doh! That must be very frustrating indeed. I hope you are able to get through the weekend and get something down? Crossing my fingers it gets organised next week.
 
Thankyou both!

Thankfully I am managing to get some food down. As I eat I start to feel a pressure like feeling which is my warning not to eat much more. I'm trying to stick to softer/low residue foods but unfortunately it's currently a case of any food hurts :( .
 
The other day my GP messed up one of my repeat prescriptions, and I ran out. I rang the GP, and the receptionist said that medications can be provided by chemists/pharmacies without a doctor's signature in some cases. She rang my chemist to see if they'd accept my unsigned prescription, called me back and told me they would, and the chemist delivered it to my house as usual the next day. I don't know what cases would qualify for this - but my prescription was for an addictive, prescription-only painkiller, and apparently that's fine. It might have helped that my chemist had regularly provided it to me already. I know there are similar ways round prescription problems for "emergency medications" - when someone could die or become very ill without their medication. Ring your GP or chemist after the Bank Holiday, they should have ways around these things, especially if you have anything on your medical record that shows your doctor has recommended you have the medication, or a previous prescription..
 
I will be seeing my IBD nurse on Wednesday anyway, so it would only really be one day difference, and she's more likely to give me the amount I need. I know at my doctors if an item is on repeat or its something you've had a couple of times before then my doctors will reissue a script without you needing to actually see the doctor, but they will only give you the same amount as before, so doing that would probably only get me one more tin. Emergency supplies are generally just a small amount of the medication to get you through until you either see a doctor or your repeat goes through. I really need a proper bulk prescription, something like 12 tins a time otherwise I'll be down there every few days either putting in a script or collecting the powder. Unfortunately things like modulen are so specialist they won't just give it out without proper instructions.
 
It's the big day tomorrow, not only should I be getting my modulen sorted out but hopefully I will also be getting my pill cam results. I'm not really sure what to expect, I'm sorta hoping they can see some inflammation, since that's the only sure way things will progress.

The doctor I was under in hospital kept saying we have no proof I flared last year (Uhm, I have fecal cal and blood results that show inflammation and nearly a stone of weight loss, more than enough to give my regular consultant and my IBD nurse grounds to treat me) . His argument is that the colonoscopy I had last year was clear, so he thinks the other tests mean nothing, even though they were done months apart. The doc I was under in hospital kept questioning why I was on immunosuppressants (because I couldn't get off steroids without feeling rubbish and my inflammation markers going up. Not good enough for him though) and why we were now considering biologics (bone marrow suppression on immunosuppressants) .

To be honest, he made me feel like I had no right being there. The saving grace was that he'd been in contact with my regular consultant who had got him to at least try the pill cam. If it hasn't shown anything then I'm not sure what they'll do next, and I can see the doc I had in hospital (who is my old consultant and never showed a spec of interest when I was actually his patient) trying to interfere further. I'm just thankful I am seeing my regular team again now, and at least know that they will do everything they can.

It aggravates me that some doctors just ignore how the patient is actually feeling, and will undermine current treatment, leaving other doctors who have been bending over backwards for the patient to pick the pieces back up. If my regular consultant hadn't of been involved, and if the hospital doc didn't have a decent registra working with him then things could of been set way back.

At least if this shows where the inflammation is (that's been showing in bloods) then I will have conclusive proof if I have to be admitted again. My only concern is that if it comes back negative, then any consultant other than my regular one is going to try and say I didn't even flare last year, and I'll be back in the position of having to prove I need help.

I'm not even sure this post makes much sense to anyone else. But basically, if the results show us where my inflammation is, it's going to make things a heck of a lot easier. If they don't, there might be a lot of barriers.
 
Your post makes perfect sense to me! What doesn't entirely make sense is the "reasoning" of some of your doctors. I mean sure it's always hard to know exactly what's going on inside unless you are scoping at that minute or have pill cam results from yesterday but your inflammatory markers and your symptoms do not mean nothing!!!

Some doctors be crazy :eek2:
 
24601 said:
Your post makes perfect sense to me! What doesn't entirely make sense is the "reasoning" of some of your doctors. I mean sure it's always hard to know exactly what's going on inside unless you are scoping at that minute or have pill cam results from yesterday but your inflammatory markers and your symptoms do not mean nothing!!!

Some doctors be crazy :eek2:
Click to expand...

That's one of the main reasons I switched consultants. I was just unfortunate that the doctor on duty when I was admitted was my former consultant -_-. It's made me very glad I asked to change during my admission last year (when I first met my current consultant, who is far better! ) .
 
I just got home from the hospital, my nurse hadn't realised until this morning that I was in.. Seems like no one thought to tell her -_-.

They don't have my pill cam results yet, apparently the doctor that ordered it needs to do a report on it and he's been away etc with easter and the bank holidays.. So my nurse is gonna chase that up with an email.

However, my fecal CP results are there. In the UK 50 or below is normal, for someone with IBD they usually accept up to about 100. Mine is 231, so while not up in the 1000s like some people's, it's raised enough to show that there is at least simmering inflammation. While in comparison to other patients this isn't that high it's a big raise for me as it's not that common for mine to be high (it was even normal in the lead up to surgery despite clear active inflammation) . So she's convinced enough that I have inflammation and that it explains my symptoms.

I was due to reduce my steroids again after today, which we've decided not to do, so I'm remaining on 6 mg. My white blood cells are only just in the normal range, so we won't be upping my 6mp.

I was slightly anaemic in hospital, so we've rechecked that and some other vitamins in with my normal blood tests.

My modulen is finally sorted! I walked out of the nurses office with a script for a months worth. She's done it as 1 tin a day for a month, so I'll actually end up with a few more tins than I need (I need about 3/4s of a tin a day) so if there's any issues with the next lot I won't run out. The script went into the pharmacy today and they say it should be delivered to them by 11 am tomorrow.

I'll get the blood results by email as normal and see my nurse again in 3 weeks. If she hears anything about my pill cam results before then she'll let me know.
 
I just wanted to say that I think you are quite right in interpreting your fecal calprotectin level as being high for you - and that it's your relative levels that are most important rather than a comparison with other people's highs.

It's very easy when you're someone who doesn't have wildly high inflammatory markers in bloods or fecal calpro to think/hope/wish/be told that that means the inflammation isn't that bad. But that's simply how some of our bodies respond and it's all too easy for us and our doctors to not be as concerned or act accordingly by escalating treatment when those inflammatory markers aren't as raised in comparison to some other Crohn's patients. But it's all relative and that's so important for everyone to understand. You don't need a fecal calpro in the 1000s to need treatment. And even simmering inflammation can do a lot of damage (something else we and our doctors mustn't ever forget) so I'm really glad that you've got your Modulen supplies - getting on that inflammation and trying as best we can to reduce it quickly is our goal and it's good that your IBD team have got themselves sorted :)

Hope the Modulen drinking goes well and that inflammation gets under control. Also still crossing my fingers for you to get useful pill cam results!
 
Thankyou, I'm lucky to now have a like minded IBD nurse and consultant who agrees that this is more than enough to show somethings going on and it needs to be dealt with (no matter what that other consultant says) .

My bloods are almost always normal, they are the very last thing to show inflammation, and I'm always quick to tell new doctors that. Again, thankfully my IBD nurse is of the same mind that normal bloods don't mean there isn't a flare, and she will always trust when I say I don't feel well. I think switching my IBD team last year was the best thing I could have done for my health and this has just proved that. If I'd stayed under my old team (the one I ended up stuck with in hospital) I'd probably still be waiting for an appointment, and they'd probably tell me that the fecal cal isn't enough (that's what he told me in hospital when I said it was high last year and that was why I'd started treatment.. Maybe he's just sore that I chose my current consultant over him. ) . The team I see now is so much more attentive and don't palm me off with excuses, plus they get things done (eg the modulen, something the hospital team should have sorted before I was discharged).

Thankyou! I'm hopeful that they will be able to locate the inflammation now and give a clearer picture of what we're dealing with.
 
I think you made a really good choice to move consultants...and I know it's not an easy decision to make to deal with the upheaval when you're ill but hearing stories like yours, where you've found a much more responsive (and IMO more sensible) IBD team is really encouraging and illustrates just how important it is and the big difference it makes :)

I definitely think it's important to have doctors who look at your individual case of Crohn's and how it presents for you, rather than seeing you as a generic Crohn's patient (not that I really think there is such a thing but it seems some doctors aren't aware of that!)
 
I actually met my new consultant during an admission last year, and he instantly was just so much better, he didn't make excuses, he didn't make me wait days to be seen and didn't make me wait for treatment and acknowledged the pain I had. I asked him there and then if I could stay under his care and he said that if I was happy to travel to a different hospital (which is actually closer to where I live) for his clinics then he had no problem taking me on. It is hard going from what you know, but my experience has made me a big advocate for seeking a second opinion or asking another consultant to take you on if the care you're getting isn't good enough.

That's definitely true. Too many doctors see an illness instead of a person these days, and that just leads to chaos.

I will be sure to let you all know how I'm getting on with the modulen etc, I plan to start it properly over the weekend while I'm at home and can take my time getting used to it before I have to worry about going out with it.
 
I had an email from my IBD nurse this morning, my white blood cells are at 4.6, so still very close to the borderline (under 4 is considered low in the UK). So theres no sign of being able to up my 6mp, and without the pill cam there isn't a huge amount more they can do.
 
I did the pill cam while in hospital, about 2 and a half weeks ago. The pictures need to be reviewed then sent to the consultant who ordered them (who isn't my regular consultant) who then needs to do a report on them before my nurse can access it. Hopefully that'll show clear inflammation because it was done a day after the sample was submitted for the fecal cal, so this time no huge gap between tests.

I love the nhs, but all the red tape is a pain in the butt (literally)
 
Tis crappy when your expectations are raised by the feeling you are finally getting somewhere only to find yourself stuck in a bit of a rut again. On the upside though the results do exist - albeit currently in a closed space - and they will reach you soon. Given your recent admission, you need something to be put forward. Do you have an upcoming appointment with your consultant rather than the nurse?
 
Interesting they think 4.6 is low. I wonder what they are saying to say when my daughter has her first blood test in England. Her GI in Australia is happy with between 3.8 and 4.5.
 
It was a bit disappointing, but at least they could tell me it was a flare.. At the moment I just have appointments with my nurse, and I really don't mind that, she's in frequent contact with my consultant who gives her instructions on the next step with treatments or tests and I know he frequently looks over my notes and results so he's always in the loop, if there comes a time where I want to see him I just have to ask and they'll sort it, but I'd have a bigger gap between appointments etc.

Catherine - I think it's because I have so much history of my bloods dropping with 6mp, this is the 4th time we've tried it now, and they are being super cautious. I think their thinking is that if it's on the brink now then upping the dose is going to send it under. They do have patients who are on the full dose and their bloods sit at 4.0 and they are ok with that, but I'm on the very lowest dose they can give and it's already affecting me (before I restarted the 6mp my white cell count was about 7.5) . Plus I pick up colds like they're a fashion accessory -_-.
 
So, I've been wondering why my modulen has been as thin as water and not been filling me up in the slightest, as in its not been touching the sides. I cross checked the hand written instructions with the instructions on the booklet that comes with the modulen, and it turns out the written instructions had me using about a third more water than I was supposed to. Thus resulting in what is basically flavoured water and not anything like what they were giving me in the hospital (which was much thicker and actually filled me up) .
These hand written instructions were from my dietitian, so I did a bit more research and I'm pretty sure that she's actually done it the way it should be for a young child not for an adult -_-. I swear she thinks I'm 16 not 22. I weighed myself yesterday and I've actually lost weight since I started it.

Tonight I'm going to make it up as per the instructions in the booklet (sticking to the instructions for the same amount of calories). Then I'll be able to see how full I am when it's not so watery (I make it up the night before and keep it in the fridge, it's a lot better than drinking it straight after its made).

I've managed to find a few flavours that are actually not too bad. Mixing it with coffee and chocolate flavoured milkshake powders works really well, and warming the coffee flavoured one in a pan makes it so much more satisfying. I've also been mixing it with a milkshake flavouring we have hear called crusha, which is a liquid flavouring to add to milk etc. That one works ok, takes a fair bit to get the flavour to come through.

It's all been a bit trial and error, but I know the consultants /my IBD nurse said to play around with it and how I mix it etc (sticking to the same amount of calories).

In other news, I've been looking for work as you might know, and my local job centre have sent me to a support center for unemployed people with long term health conditions. They've also put restrictions on my file so that I can't be put into any jobs that are over 25 hours a week, and I can't be made to take a manual or stressful job. This is super helpful and takes pressure off.

I had my first session at the centre today and it was really good :) I'm looking into advocacy and /or mentoring work which is a less physical way of helping people, and one of the staff at the center thinks they can get me an interview with the UKs youth advocacy service, which is an amazing opportunity.

Crohns can knock me down, but it won't keep me there, time to kick butt!
 
Oh that extra water would make a big difference! Silly dietician ;) I know that I find a big difference between standard and made up with 1.25 the calories of standard - not saying you should go with that but for me it was my sweet spot for sufficient calorie intake v. volume plus I preferred the taste of it / mouthfeel of it being slightly thicker and milkier. I'm weird though because I liked it best unflavoured and at room temperature! I'm glad that you're having some success with finding flavours you can drink. It's definitely all about seeing what you prefer!

Glad the session went well and great news about the possible advocacy/mentoring work!!! :dusty:
 
Hopefully things go better with the thicker shakes for you. Sounds like you're still going through a lot over there. But, good luck in finding some employment!!!! Fingers crossed that something will come soon for you!
 
24061 - The formula she had me using literally made it 1 cal per ml. She had it as 36 scoops in 1275ml which in total would make 1500 ml. The way the book does it works out about 1.25 cal per ml, using 36 scoops but in 750 ml making a total of 1000ml. Which seems more like what I've seen other people use. Being more milky definitely sounds better, that's why I like it warmed. It tastes like slightly flavoured warm milk :) . My dietitian means well but often seems to jump to quick decisions or just try and guess things rather than looking at things properly.

Thankyou, it's something I've only recently realised I can do with my current qualifications, but it's the perfect balance between wanting to help children/ young people but not being overly physical.

Cross- stich gal - thankyou, I sure hope so. It's been a long few weeks and my body's so tired with everything. Thankyou! It's so good having a positive aim :)
 
I am so glad things are looking better for you all around, you've had a tough row to hoe. I'll pray it continues. So good to hear you ready to kick butt.
 
Hang in there valley!!! Totally understandable that you're tired. I'm sure we'd all be just as tired as you are if we'd had to have gone through everything you've delt with. Sending big hugs to you!!!!!!!!!!
 
How are you getting on? Any word on the pill cam results? I hope that you are able to get more calories now and that you begin to see an improvement. I appreciate you sharing your experiences on experimenting with your formula.
 
Hi everyone, sorry for the lack of updates. My home Internets been down for over a week now. I'm at the hospital for my check up now so I'm using their wifi to check in.

I'm still fiddling about with the modulen. I was finding the more concentrated mix was making me feel really sick so I've been trying about halfway between the booklets measurement and the dietitians. This seems to be working better but it's still really sickly which has been very harsh on my stomach (nausea) and I've noticed a big increase in my acid reflux since I've been on it. I am however noticing that there is a reduction on my abdominal pain which is a lovely change.

I've had no contact from my dietitian which is frankly annoying but not surprising. I was supposed to see her a month after discharge and it's been 6 weeks on Friday but there's no sign of anything.

I'm seeing my IBD nurse today and I'm hoping she'll be able go gell me something about my pill cam since its now been over six weeks since I had it done. I won't be overly impressed if the consultant still hasn't done a report on it.

In other news, I've been encouraged by several different people to apply for personal independence payment (Pip) which is like out version of your disability payments.

It isn't a statement that you can't work, it just means you have limitations. So I'll still be allowed to work, but it should mean that I can comfortably work reduced hours (say about 20 hours a week) without having to worry about earnings. It could also entitle me to certain adaptations.

I finally worked up the courage to pick up the phone and order the form which I received last week. My nurse has agreed to be put down as a contact for it so they can get information about my crohns and I have a good relationship with my usual GP so I've put her down for the fibromyalgia. Incidentally the fibromyalgia has been playing up like wild fire the last few days. If it's not one it's the other.
 
Last edited:
I get the full amount of both parts of PIP (mobility and daily living (personal care)). Let me know if you have any questions about it. Be prepared for them to take a long time assessing you. It's not supposed to make up for lost earnings (it doesn't depend on your earnings or savings, etc.) it's to pay for help you need because of your medical problems, such as people to care for you.
 
Last edited:
I'm glad that something at least seems to be working for you!!! Especially that the pain seems to be going down!!!! Now, hopefully everything will start falling into place. Good luck at the doctors today!!!
 
My internet is finally fixed!

The appointment went well. I am still on the border of anemia, my iron is OK but my feritin is low and my Hb is just below normal. My nurse says if it was up to her, she'd schedule a one off iron infusion to get it back up since its inevitably going to drop, but unfortunately the lab won't authorize it at this level.

I had some bloods done today, if they are stable then we will try to raise my 6mp. If my white cell count is still at the lower end of normal then we aren't trying it.

There is still no report from the pill cam. Apparently my GP should have got it and contacted me, but as ever they didnt. So my nurse is going to contact the endoscopy unit directly and then let me know what happens from there. She has to go to confrences etc the next couple of weeks so it might be that we discuss it when I see her again in free weeks. She is going to talk to my consultant when she has the result to discuss my case.

I have a script for a different PPI med to try instead of the omeprazole to see if it improves my symptoms, if it doesnt make a difference then I'll switch back but its worth a shot. I also have a script for a multivitamin that my GP was instructed to put me on 2 months ago but never told me about (the dietitian wrote to them).

If things don't begin to improve and/or things deteriorate when we lower the steroids and/or stop the modulen then she will approach my consultant about getting my case discussed at the next MDT meeting where they will decide if I can be put forward for biologics. She said they use Humira a lot, so I think that might be the more likely one. To get to this point is a massive step and I'm glad I have a plan in place.
 
Unxmas, Thankyou, theres a local company that's going to help me fill my form in and make sure I know how to answer things at the assessment etc but if I think of anything then I will let you know. I'm aware its not means tested, I think I worded it a bit strange. I'm not well enough to work full time, but with all the costs of hospital trips and the cost of bus fare to pick up prescriptions and all of those things, I wouldn't manage on a part time wage. I've been told by a number of people that I should qualify for the daily living aspect as I can struggle dressing ( my boyfriend has found me half dressed in a heap on my bed before now), find it difficult to peel and chop veg etc, have a hard time gripping and a difficult time concentrating. I don't know how I'd do on the mobility side as I do get around OK most of the time, but I use crutches when my fibro is bad and there are a lot of times where I find the walk from the bus station to the hospital is just too much, so PIP would help in those cases since I'd be able to afford a taxi, or maybe even be able to learn to drive which would greatly increase my mobility.

All of these things would then make it possible for me to work, and lower the pressure of needing to earn to fund hospital trips etc.
 
Ok, thanks for explaining. It sounds like you should qualify for PIP, because you've pretty much described just the sorts of things it's supposed to cover. Good luck!
 
Thanks both,

Why can some medical professionals just not read notes? I picked up my meds to day, including the supplement that my dietitian asked for. Theres a big warning on the back saying "DO NOT TAKE IF YOU SUFFER FROM HYPERCALCAEMIA". I was diagnosed with hypercalcaemia when I was 15, it's been stable lately, but I'm supposed to be super careful as it spikes without warning and it can become very dangerous.

I don't blame my IBD nurse at all, she just followed the request, she doesn't normally prescribe supplements so wouldn't of known. The dietitian however really should have known better than that. Urgh.

I've emailed my nurse to let her know and ask what she'd like me to do from here.
 
I got a response already, my last calcium check was high so the supplements are a no go.

My nurse has gone to endoscopy to try and get my report but had no luck, it's not been done yet, she was told it would be the next 2- 3 weeks.

Also, my white blood cells are firmly back in my boots. They're at 3.2, I'm already on the lowest possible dose (12.5 mg), so there's no room to go down. It seems like it could be the final straw and it could now be goodbye 6mp for good.
 
I've just had another Email from my IBD nurse, she has had contact from my consultant and he wants me off the 6MP. He has suggested that I might need another scan (haven't had one since June 2014) but will talk to me during my next appointment with Allyson.

They are going to put my name forward to the MDT meeting to discuss where we go from here. They usually have these meetings every month but for some reason there isn't one this month (May) so the next will be in June. If the MDT meeting agrees then the next step is biologics. If they don't then I'm not really sure where we can go.
 
Frustrating that you have to wait until next month's meeting but overall (and with the trouble you've had with immunomodulators and this roadblock you've encountered to biologics) I think this sounds like progress! Yay for some progress! :)
 
Boo hiss for having to wait, one of my pet peeves, but I guess things are progressing - sending support your way!
 
They keep making the IBD team go to conferences in England, so that's possibly why there isn't a meeting this month. My IBD nurse wasn't too sure.

I suppose one positive of it being next month is that my pill cam results will be back in time and they should have all the info they need apart from maybe one scan.

I'm starting to slowly wean down the modulen, I'm slowly decreasing it and slowly upping my food intake. It seems to be going well at the moment, I'm doing it very slowly and keeping a record of what I'm eating plus the amount and how well (or otherwise) I feel after. The hope is that I'll be fully off it by the end of May.


In other news. I got a job! I am now a trainee dental nurse. I start on Monday and I'll be working with a lovely team. I did a work trial there last week and they were all so friendly and welcoming. And I was chatting with one of the dentists, and he started asking about my braces, and said I looked like a good candidate for surgery. I said that I had been offered and it's been something we've planned for but that they may not go ahead because of underlying health issues potentially making it too risky. So he asked what they were, so I said crohns, and it turns out his wife has crohns! So when the management called me later in the week to check a few things they asked me about how the control was at the moment and said they were well aware it won't be controlled forever, and they honestly didn't seem at all put off. So I'll be working with people who understand :)
 
Wow that was a long week. I got thrown in straight at the deep end and got left on my own to do stuff a lot, which shows they trust me as some of the equipment is very easy to break and also very expensive. Things seemed to go well though :) . Hopefully there'll be people there to show me stuff more now as they were short staffed last week so hopefully this week I'll be watching the qualified nurses and learning from them more rather than trying to figure stuff out myself.

My body seems to be holding out alright. I've been having a fair amount of aching especially in my back and hips. My stomach hasn't been too bad though, there's pain there but it's not too bad.

I'm doing well reintroducing food, I'm tolerating it much better than before the modulen.
 
Sounds like you did pretty well this week!!! Glad you did so good on your own, but thankful you can get a little more help with what you don't know.

Sorry about the aches and pains and the flaring. But, also thankful to hear you're doing alright with food again!!!! Keep up the great work and hang in there!!!!
 
I was full on assisting hygienists and everything, even doing suction on my first day. And been working in the sterilisation room and on reception. There's loads to learn but they're a lovely team.


Thankyou. I have my appointment with my IBD nurse on Wednesday.

Do you have any knowledge on how crohns can affect your mouth? I've had some nasty swelling and ulcers. My orthodontist took a look last Wednesday and gave me some spray to use to try and calm things down. It's still super sore though. I'm wondering if it's worth mentioning to my nurse / consultant on Wednesday
 
I'd definitely mention the swelling and ulcers! Mouth ulcers seem to be a fairly common manifestation of Crohn's but I've also read this:

"Oral CD may present with labial enlargement, oral ulcers, mucosal swelling, fissuring of the tongue, facial nerve palsy, facial swelling and erythema, mucosal tags, gingival enlargement, and cervical lymphadenopathy. Oral aphthous ulcers and pyostomatitis vegetans also may develop." Source

Hope it isn't Crohn's but better to know what you're dealing with.

Glad you had such a good first week!
 
I saw my IBD nurse today.. She doesn't want me on MTX she says she really doesn't like young people being on it. So she's going to push for me to have biologics. The next MDT meeting is on the 5 th of June and my case will be discussed there.

If they give the go ahead then I'll be sent some forms for screening and some information on the different medications so I can try and decide something before I see her next. She says it would probably be up to me but she thinks the humira would be my better option.

I have some prescription mouth wash to settle things down. If I get on with it I'll be given a longer prescription.

I have some more lansoprazole which has helped significantly with my reflux.

I'm also having my steroids upped again, back to 9 mg. My stomach been giving a bit of grief the last few days and with starting work I need to kick it sooner rather than later.
 
Oh boy, here we go again! But, at least it sounds like they've got a plan going as far as where to go now. Good luck! :) I hope this will get you so you can finally be comfortable!!!
 
Hey all

I've been away without proper internet the last week and have come home to find an email from my IBD nurse, she says that they finally have the results of the pill cam and it didn't show anything in the small bowel.

They're still going to put me forward for the biologics anyway, since I'm clearly hypersensitive to the Aza and 6MP and they know I definitely have inflammation even if they are still playing hide and seek with it.

My belly has been somewhat better behaved this last week with the higher dose of steroids, so at least I'm a bit more comfy while things are figured out.
 
Not feeling so good this week. Stomachs been having a funny and my joints are swelling.. I'm starting to struggle at work because I'm so tired I can't move as quickly as I need to and pain is very distracting. My painkillers are really strong and make drowsy so I can't really take those on work days.

Being so new I don't feel I can take time off, so I'm trying to muddle through but right now I feel a bit more of a nuisance than a help.
 
Thanks both..

On Tuesday I was in with a hygienist who let me sit down when possible even though we usually have to stand in her room because of space. My mentor said we aren't really supposed to but when I explained why id been allowed she said that's ok.

Then Wednesday my mentor said we shouldn't really be in surgery when not feeling well, since we can't look after us and the patients, so she said if im feeling iffy to tell her or the managers..

So today I went in and on my way my stomach really started to hurt and I felt sick, so I had a word with the owner when she let me in (I'm usually the first to arrive apart from the owner) and she sent me home.

I felt so bad that I had to leave and like I was really letting them down, but I couldn't garuntee I didn't have a bug and I really needed some good painkillers. I'm hoping a few days of rest and pain meds will mean I can go back on Monday and be on form.

My MDT meeting was today but I've not heard anything yet, I might not hear until I see my IBD nurse on the 17 th. So it could be an anxious time until then.
 
Well. I think I might have an idea why I suddenly feel like rubbish.

There's been a huge recall of gluten free products in the UK as they have been found to actually contain gluten. Some of which I've eaten as recently as Thursday, on Friday I had crippling pain. Coincidence? I think not -_-.
 
Well. That's a curveball. I'm not having anything added.

The MDT weren't happy to give me biologics, they say that they don't know it's crohns because they don't know where the inflammation is. This is despite all the fecal cal etc I've had showing inflammation. Plus a run of a few months last year where every blood test showed inflammation. So hey who knows.

I've got to have more tests. Possibly a white blood cell scan or another form of endoscopy. Those could take months to even get and appointment for.

In the meantime I have to try and manage with steroids. Im trying to come off them but if I get worse I have to raise them again.


My IBD nurse is concerned about my weight, she doesn't think I'm getting enough nutrition so she wants some supplements, so she's speaking to the drugs department to see what they suggest.
 
I'm glad I'm not the only one who thinks that! I'm terrified that I'm just going to get worse now :(. I'm supposed to be tapering my steroids (very slowly, by 3 mg a month) but I pretty much know that when I do I'm on a time bomb..

My nurse says she's not going to give up and we'll keep going until I get the answers and treatment I need. But that doesn't make it any less frustrating that I'm pretty much back to square one and that it's going to take months before we get any real progress . I'm so done with all the tests just to clear red tape.

My own consultant couldn't be at the meeting, so apart from my surgeon who hasn't seen me in nearly 2 years it was just my nurse that knows me well. The consultant that used to look after me was there but he was never that much help, the others that were there don't know me at all.

I'm just so done in. I'm already feeling poorly and I've only just reduced my steroids. I can't afford to get sick again. :(
 
Agreed. It's too bad there isn't someone else there to talk to for you. Is there a family member or good friend who can go in with you to help you speak up and somehow be heard? Maybe this might help if they're not listening to you by yourself. I remember my frustrations when I wasn't being heard...
 
My parents are usually in work when I have appointments. I think my mum will actually be off for the summer break when I next go but to be honest she doesn't have a massive understanding of everything, I do explain and she does try but due to work etc she usually has only had second hand information. My partner doesn't work but lives 50 miles away so its hard to get him here for appointments.

I think the most frustrating thing is that the person who I see (my nurse) actually agrees with me. She said she understands where the consultants were coming from but even she was sat in the meeting thinking they couldn't be serious.

I don't know where my consultant stands, but I'm pretty sure he agreed about me going on biologics or he wouldn't of put my name forward for the meeting.

I think it's unfortunate that patients aren't able to attend the meeting or send a representative. At least if I'd been able to do that I'd of been able to directly ask the consultants who made the decision.

I have voiced my concerns to my nurse and told her I'm worried because of what has happened before. And she said that she's not going to stop until everything's sorted out. She says she's on a mission and nothing will stop her. She says she knows there's something wrong. She's certain there's inflammation there, she's just finding it hard to show them where. She also said that it's her job to take what I say seriously and that she won't hide anything from me. So I at least do feel like she's taking me seriously and I've always felt like I can trust her.

My concern is what happens if I get sent into hospital or something and my own team arent available then I'll have to fight to get any kind of treatment again. And that I really don't know where we go if I start to deteriorate between now and the tests.
 
thats too bad you didnt get the biologics. you have been for a long time on steroids now and seems like it could also take a lot more time for tests and results, unless your consultant asks for a urgent request. why not going to methotrexate?
 
Even with an urgent request it could take months, my last colonoscopy was urgent and it still took 3 months for me to get anything through. So he probably will ask for urgent but it might not make that much difference.

My IBD nurse isn't comfortable with MTX and neither is my consultant. They've only got a handful of patients on it and really don't like giving it to young patients especially those who may want a family in a couple of years time. Aside from that there is the concern that I reacted badly to both azathioprine and 6 mp, and they don't want to take the risk of further bone marrow suppression for a med they've never wanted me on anyway.
 
It's a wonder we're all not in the loony bin, This disease, which has so many twists and turns and hidden aspects and uncommon stuff that isn't typical is enough to make us all crazy. You've been through so much, with no clear way ahead. I admire you for sticking to it and I too wish I could be closer to give you more support. I think I need to go on something stronger and I am a little scared about it, but all I've been doing hasn't really helped.
 
Hello all.

Been ploughing on. Still in a fair amount of pain. Don't really know what to do about it. I'm on my 3 Rd period in 6 weeks and that's certainly not helping.

Pain management has been tricky and I'm not sleeping as much as I need to.

I take a mini pill which usually controls my periods but I don't think I'm absorbing it. So I'm getting erratic uncontrolled bleeding. My periods have always set my crohns off.

Lost for what to do.
 
Depending on the reasons for which you're taking the pill, it may be possible to use a patch or injection instead.
 
The mini pill was selected specifically because of the side effects of the other forms of contraception (mainly DVT as there is family history)
 
I was going to say that I took the mini pill for awhile too. I tried the regular one before we got married, but it set my colitis to flare. The mini pill has less estrogen and is usually taken after a pregnancy. But, it's also taken by those of us who can't take that regular one.
 
I've been on the mini pill since I was 17 and never had problems with it . Personally I don't think I'm absorbing things properly as I've got a host of nutrient deficiencies as well and I'm loosing weight even though I'm eating more than ever .


I had an email from my IBD nurse saying to contact my gp regarding pain management and period control so I might ask about the patch, I don't know much about that one .

She also said I am having a white cell scan but they don't know how long it will be to get a date.

I'm also low on b12 to the point where they are going to contact my gp to start me on injections .
 
Hi, just reading over your story and it sounds a lot like mine! I live in Missouri, USA, and it seems your healthcare system is better than ours despite your problems. I too, waited over a year for a colonoscopy, and have been through so many rude doctors! Fortunately, you're covered, I pay almost my entire paycheck to health insurance, and still have bills piling up! It's really crappy to have to deal with a disease AND a lifetime of debt for it! Good luck, right now I'm on a small dose of steroid, 5mg every other day, continuous birth control, and anxiety meds. My flares seem to be connected to what I eat, my periods, and anxiety. Lately I've been sleeping with a binder wrapped tightly around my abdomen wich seems to help. I'm better than I've been in years and am hoping for remission soon! I'm studyi ng to be a dietitian and work in dietary at a hospital. I see everyday how apathetic and just unknowledgable dietitians are about this disease, and I hope to change that.
 
Hi all... things haven't been so great. I've been struggling a fair bit.

I got a date for my scan but it was going to be yesterday so I had to talk to my boss about it. We winded up having a big long chat about my health and how things are and how unpredictable it all is.

It was decided that I am not well enough to be doing such a manual job and that it was better to leave as I was having a high number of appointments and they couldn't cover for me all the time. My boss was very concerned for my health and felt that the environment was just no good for me, she said if I was her child shed be telling me it's not worth it. She says I'm clearly poorly or I wouldn't be getting the scan and especially not so quick (they're very expensive and have huge waiting lists) . She said she thinks I would just keep getting worse if I'd stayed there and to be honest I do see where she was coming from but I am deeply disappointed and upset to have lost the job.

The scan then ended up being cancelled as there was a problem with the syringe driver. It has been rearranged for the 23rd of July (they offered me next week but I'm away for my boyfriends graduation).

I have an appointment on Monday with a gp to see what my contraceptive options are. I'm seriously considering the implant.


The scan etc can't come soon enough, I'm loosing weight and I'm struggling with pain pretty much every day.
 
Just catching up on your posts - so sorry they didn't go for biologics. I agree it doesn't make sense. Glad you have a good IBD nurse on your side.

I've had a white cell scan and yes, they rarely do them for Crohn's so I, too, think it is a sign that they are taking their search for your inflammation very seriously.

Very sorry to hear that you had to give up your job too. Hoping they finally get to the bottom of things and start treating you effectively :ghug:
 
Oh, Angel, I am so sorry fo this latest wrinkle, but I am glad you'll have that scan soon and maybe get some real answers. Praying for you
 
So sorry you lost that job after you had wanted it so bad!!! :( I sure wish we could find something that would finally work on you! :ybatty: Still sending lots of hugs your way... :hug:
 
Thanks everyone. You know the most frustrating thing about all of this? In terms of crohns, I actually felt better on the immunosuppressants, I had less pain, I gained a healthy amount of weight, my vitamin levels were stable, I had more energy and I could eat without feeling sick. I know that I was taken off them for a very good reason
, my immune system was basically being destroyed but it just makes it even more frustrating that I'm in this position and that I was refused biologics. It doesn't make sense. If there wasn't anything to treat the immunosuppressants wouldn't of made me feel better. I'm so done being taken for a fool.
 
My first one is all done :). They're quite stingy and sore but it's worth it if they live up to the reputation they have for giving people energy etc. I have another 5 booked for over the next two weeks (every other day). The nurse says I'm very brave 😊
 
Hello everyone,

A few little updates -

I'm now 4 shots into my B12 loader and starting to feel a little different with a bit more energy. Still not bouncing off the walls but I can function a little better than before at least.

I saw a dietitian on Tuesday. It was someone I havent seen before and she was really good. She was concerned about my weight as I have dropped again and is keen to get it stable. My BMI is 19 which is borderline, but she says she classes that as underweight for IBD patients. To her a BMI of 20-25 is preferable and she would ideally like mine to be 23 ( I have never had a BMI of over 20, so good luck lol). She is writing to my GP to ask them to put me on supplements called vital. They are somewhat like ensure but the protein chains have been cut in half making them easier to absorb. She wants me to go back to clinic in 3 months.

I saw my IBD nurse on Wednesday, bloods were taken etc. She's going to refer me to a gynecologist for advice regarding my difficult periods as I have now had 4 bleeds in 7 weeks. Each bleed has been lsting 5-7 days and is heavy and painful. Its been making it difficult to establish how much of the pain is crohns and how much is period pains at times. Crohns/IBD wise we are just keeping things as we are for the moment and waiting to see what the scan tells us.

I had my white cell scan yesterday, it was a very long day but I hope it will show them what they need to make the next step. The scanner has a screen at the side which shows what they can see. The white cells show up as little white dots, and an area with more of these dots appears lighter than others. There was definitely an area which was much brighter than anywhere else, it was basically white. Obviously I'm no doctor and im not 100% sure how these things are analysed but it looked promising to me.

In other news, my fibro is being horrid and pretty much everything hurts almost every day. It's extremely difficult at times. As much as I still hate the fact I had to leave work, I really see why my boss thought it was for the best. I really could not have done this past week and still kept up a job.
 
Just a little add on, as a result of the fibro being horrid I wound up having a GP appointment regarding pain management. I now have a new medication called Gabapentin, it was originally used as an epilepsy medication but was found to work very well for nerve damage and chronic pain med, so it is now licensed for use in conditions like fibromyalgia. It may even take the edge off the abdominal pain.
 
Hello everyone

I have some news. I received a letter from my consultant with the results of my scan. He says there is evidence of inflammation at the end of my lower intestine, in the area they reconnected during surgery.

We will be discussing treatment plans during my planned appointment on Wednesday and if I need anything else I'm to call my nurse.
 
Thankyou lovely. It was a weird relief to get that. Obviously knowing I'm officially flaring isn't great, but it's something me and my IBD team have been saying for a long time now and at least we are now proved right. It feels good to know the people who doubted my consultant will now have to listen.

I'm not sure if this opens up the chance for biologics again or if we will be forced to consider another route. But at least something can finally be done.
 
Hello everyone, apologies for the absence lately.

After my scan showed inflammation my consultant and IBD nurse said they felt that my crohns is definitely active and that biologics are my only real treatment option. With this in mind, they gave me some information leaflets and told me to see which one I preferred. They referred my case back to the MDT meeting, but this seemed to be a mere formality since last time we were asked to provide proof of a flare and now we had..surely they couldnt have a problem this time right?

Well guess what. I was wrong.

I got an email yesterday from my IBD nurse saying that they now want me to have another scope with biopsies.. I emailed back and said that this has upset me a little since my last one was really painful and it didnt even pick anything up. She responded saying that they need to get tissue biopsies this time (dont know the difference between these and the ones they usually take?) and that she will arrange for my consultant to do it at their center. Dont worry she says, they will sort it.

Now dont get me wrong I love my IBD nurse, she's been amazing through out this whole thing and always supported me and believed me when i tell her something isnt right. My consultant has also been great, hes a no messing kind of guy. If the patient says they dont feel well then he takes notice and does everything in his power. He has always said that if I'm in pain it means they need to change what they're doing.

So I have no worries about them. I respect them and I trust that they are and will continue to do everything possible to help.

However, I must admit that i am more that just a little upset. My team keep pushing to get me treatment, and the mdt meeting said show us the inflammation.. so we have.. but thats still not been good enough. I am unsure yet if we will have to go back to them after this scope. I am hoping that if they find the inflammation in the biopsies then I will be granted biologics with no further problems. But if they do have to go back to the MDT then I am concerned that they will still say no. Which would be crushing.

I have been in an increasing amount of pain lately. The other week, my boyfriend was staying with me while my parents were away. He was sleeping in the spare room ( I had a single bed and hes 6ft ) and I had to phone him and get him up at 7 am because I'd been crying in pain for nearly four hours and couldnt take it any more. He wanted to phone me an ambulance but I refused and self medicated etc.. I like to think I handle pain pretty well, but that was beyond. Ever since that my stomach hasnt really settled properly, the pain goes a little but then comes right back, and I don't know if i can deal with that another 3 months.

I have tried to be patient, i know these things take time and they have to make sure they check everything, but surely after everything I've been through they should have enough information to do something.

The waiting lists for urgent scopes are around 3 months. 3 more months of horrible pain that makes it impossible to function normally. Surely that's not right? My IBD nurse says my GP should help me with pain management, but they either act like i'm looking for drugs or they panic and send me into hospital. I'm also pretty sure I've been bleeding a little. As I've been seeing small amounts of blood in my underwear. I originally assumed it was periods starting but then nothing came. I'm not 100% sure on where it came from but I have seen blood come out before so im reasonably confident.

Apart from all that, the thought of another load of prep when the last one made me violently sick and I had to be put on fluids plus another scope so soon after the one that went wrong really makes me nervous. I have always found scopes very painful, and I certainly wasnt sedated very well the last time. I know my nurse says she'll get it with my consultant this time but I don't know if she can 100% garuntee that as it was meant to be with him last time and i ended up with someone else. I will be asking if i can get a different prep at the very least and maybe more sedation if thats possible.

I know all this is just a part of IBD and I know I should be used to it, but right now I really feel like I need a break. I'm so sore, barely sleeping and my appetites all over the place and its been like this for the majority of this year if not longer.

I don't really know where I'm going with all this. I just needed to get it out to people who understand. I have an appointment with my nurse next week and have lots of questions to ask. Most of all i just want some relief from this pain. I really dont see that as being too much to expect.

I'm going to try and make a doctor's appointment tomorrow to sort out some pain relief. I just hope they don't send me to the hospital again -_-.
 
Last edited:

Similar threads

Anna's Bandit
Hospital
Replies
3
Views
371
my little penguin
my little penguin
A
Fistula and Abscess 😡
Replies
7
Views
1K
asadmom
A
M
Muscle weakness and pain
Replies
2
Views
929
moose185
M
A
Chronic Elevated CRP
Replies
2
Views
591
amyruns79
A
P
Bad flare, what next
Replies
17
Views
2K
Anna's Bandit
Anna's Bandit

Latest posts

Back
Top