Crohn's Disease Forum » General IBD Discussion » My current situation


 
09-17-2015, 03:27 PM   #301
valleysangel92
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Thanks hun. I just wish my pain meds would work. I clearly need something else but when I try they just bundle me off to hospital. I'm going to have to try tomorrow though, I've not been able to sit straight all day.
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coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, pentasa, 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
09-17-2015, 10:17 PM   #302
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09-18-2015, 06:00 AM   #303
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Hello valleysangel,
Haven't you tried to adapt your food to the symptoms. I think it dépends on each individual but I made my own food list and I can say that it made a difference for me when associated with corticosteroids.
09-18-2015, 09:59 AM   #304
Ihurt
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I am so sorry to hear of all that you are going through. I don't understand why they want to put you through another scope( as it is invasive) when they already know you have inflammation. Why not just treat you?
Sounds like they want to make money on unnecessary tests. Colonoscopies are hard on the body as it is, especially with the prep. Every time you drink the prep it wipes out lots of beneficial flora in the gut. I just do not understand these doctors. I would understand if you had not had a scope in years, but they know you have Crohn's and they know you have pain. They should just treat you and see if you get some relief.

I have almost but given up on western medicine. I am not even diagnosed as of yet. I have been having intestinal issues for over three years now. Tests I had were negative( my last colonoscopy was 2 years ago). However, just in the last three months I have felt just awful. I had my primary care doctor do a stool test and it showed elevated Calprotectin level( 384). My GI doc just blew it off and said it was likely IBS related( he said since my scope was clear two years ago he is no overly concerned). Well I went ahead and ordered a comprehensive stool test myself ( DNA PCR stool test) and it showed also elevated Calprotectin levels, High SIgA levels and positive for Candida overgrowth). Also higher amount of fats found in my stool as well. I also asked my primary care doc to do a C-reactive protein blood test on me and that was elevated ( normal is less than .80) I was at 1.55

This is ridiculous that I am having to do all the leg work and investigating myself. I have other chronic health issues as well( IC of the bladder) and chronic fatigue issues. I know from experience that doctors really are clueless when it comes to ANY kind of chronic illness.

Anyhow, sorry to have gone off an a rant there. I hope you can get some help soon so you can start to feel better. I just do not think they should be making you go through another scope this soon when they already know you have Crohns. They should be focused on treating you instead. Hang in there. Big hugs to you.














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 -_-.
09-18-2015, 05:27 PM   #305
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I am so sorry to hear of all that you are going through. I don't understand why they want to put you through another scope( as it is invasive) when they already know you have inflammation. Why not just treat you?
Sounds like they want to make money on unnecessary tests. Colonoscopies are hard on the body as it is, especially with the prep. Every time you drink the prep it wipes out lots of beneficial flora in the gut. I just do not understand these doctors. I would understand if you had not had a scope in years, but they know you have Crohn's and they know you have pain. They should just treat you and see if you get some relief.

I have almost but given up on western medicine. I am not even diagnosed as of yet. I have been having intestinal issues for over three years now. Tests I had were negative( my last colonoscopy was 2 years ago). However, just in the last three months I have felt just awful. I had my primary care doctor do a stool test and it showed elevated Calprotectin level( 384). My GI doc just blew it off and said it was likely IBS related( he said since my scope was clear two years ago he is no overly concerned). Well I went ahead and ordered a comprehensive stool test myself ( DNA PCR stool test) and it showed also elevated Calprotectin levels, High SIgA levels and positive for Candida overgrowth). Also higher amount of fats found in my stool as well. I also asked my primary care doc to do a C-reactive protein blood test on me and that was elevated ( normal is less than .80) I was at 1.55

This is ridiculous that I am having to do all the leg work and investigating myself. I have other chronic health issues as well( IC of the bladder) and chronic fatigue issues. I know from experience that doctors really are clueless when it comes to ANY kind of chronic illness.

Anyhow, sorry to have gone off an a rant there. I hope you can get some help soon so you can start to feel better. I just do not think they should be making you go through another scope this soon when they already know you have Crohns. They should be focused on treating you instead. Hang in there. Big hugs to you.
Since your GI isn't concerned, but you still are, what does your primary care doctor say about your elevated test results?
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09-18-2015, 07:13 PM   #306
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Hi 2thFairy,

Well that is just it, my primary care doctor did not even know what the stool calprotectin test was, I had to ask her to test for it. I then brought those results with me to my GI doctor. He just seemed nonchalant about it saying that it was some elevated, but that he was not overly concerned because he did a colonoscopy two years ago only and all was normal. He said there may be some low grade inflammation, but that IBS can cause that as they are finding out. I mean don't get me wrong, he is a nice doctor, but I just do not know what to think. I am hoping he has like 35 yrs experience and is head of the GI department in the hospital( and it is a top hospital here). It is just that everything I am reading says that IBS does not elevate Calprotectin in the stool usually and if it does, it would be very slight. Mine was 384 and normal is 162 and under.

I have not even told him about the elevated C-reactive protein yet. My primary care doc who ordered it on my request is on Vacation for all next week so I wont be able to go over that with her until she gets back. I just got the results from the nurse and she is not sure about it. They said normal was under .80 and I was at 1.55. I am not sure how elevated that is.

It is just all very aggravating
09-20-2015, 09:28 AM   #307
valleysangel92
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Hello valleysangel,
Haven't you tried to adapt your food to the symptoms. I think it dépends on each individual but I made my own food list and I can say that it made a difference for me when associated with corticosteroids.
Hi, I actually did EEN for almost 8 weeks, and felt sick pretty much all the time on it. I do adapt my diet, I know what sets me off and I avoid it but unfortunately that isn't enough to control things for me. I am a coeliac as well, so I'm used to strict diet control. Even with all my diet changes and watching the amount of fibre etc I still get severe pain and sickness etc. I know diet is very helpful for some but for me it just isn't enough.
09-20-2015, 09:38 AM   #308
valleysangel92
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I am so sorry to hear of all that you are going through. I don't understand why they want to put you through another scope( as it is invasive) when they already know you have inflammation. Why not just treat you?
Sounds like they want to make money on unnecessary tests. Colonoscopies are hard on the body as it is, especially with the prep. Every time you drink the prep it wipes out lots of beneficial flora in the gut. I just do not understand these doctors. I would understand if you had not had a scope in years, but they know you have Crohn's and they know you have pain. They should just treat you and see if you get some relief.

Anyhow, sorry to have gone off an a rant there. I hope you can get some help soon so you can start to feel better. I just do not think they should be making you go through another scope this soon when they already know you have Crohns. They should be focused on treating you instead. Hang in there. Big hugs to you.
My GI and IBD nurse are trying to get me treatment. We've already tried immunosuppressants which haven't worked for me. They agree that my only real option is biologics. But it's not just up to them if I get them.

They are very expensive and quite risky meds and in the UK there are strict procedures they have to go through in order to gain access. With biologics they have to go to multi disciplinary team meetings which are made up of other doctors and surgeons with knowledge of IBD. They are the ones who decide who gets funding and when.

My IBD nurse has told me that they need to get tissue biopsies this time. I am hoping that they just want these as a base line so they can monitor my progress and that once they have them ill be allowed to start the biologics. I will be seeing her on Wednesday and I will be asking her then if they intend to start me on them after the scope or if it will go back to the MDT again.

It's a frustrating system and believe me the last thing I want is another scope. But if doing it will garuntee me the biologics then it's worth it. Obviously I don't yet know if this is the case but once I have seen my nurse I will come back and update.
09-20-2015, 09:46 AM   #309
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Oh ok, I see. It is a bit different here in the States. They will give you a script for the medications, but then you have to fight the insurance companies to pay for them. My friend was prescribed a medication after getting C-diff ( Vancomycin) and her insurance would not cover it. They charged her $722 for a 30 day supply! She could not wait for them to argue with her insurance company because that would likely take weeks to get an approval so she had to pay for it using a credit card. Our system is so messed up over here too.

I hope you will be able to get the meds you need in order to feel better. My heart goes out to you. Hang in there.. Big hugs.
09-20-2015, 01:42 PM   #310
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It doesn't happen with every med, all the other meds I've needed I've been given by my IBD team or gp or whoever. It happens with very expensive meds or meds with high levels of risks and biologics count as both hence the need for the meetings.

It is frustrating that they are asking for more tests when we've proved I'm in a flare, and I really do hope that it's just a box they have to tick . I don't know what I would do if they could still say no. I'll get all that cleared up at my appointment though.

On another note I've got pain management at least. I went to the gp Friday and they gave me some long release tramadol and told me to regularly take paracetamol (telynol) as well. If they work well I could get them added to my repeat script so I get them all the time.
09-20-2015, 01:49 PM   #311
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We have to sometimes tick boxes for dx or treatment like biologics over here with our health systems as well.

I've noticed several members whose GIs ha e performed tests or trialed other meds in order to tick boxes for insurance companies to approve biologics. Usually at that point it is a forgone conclusion the biologic is needed and warranted so I hope the same it true for your upcoming scope.

Hope things are improving soon!
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09-20-2015, 01:54 PM   #312
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Thanks clash. I really hope that's the case! My team have been saying for a couple of months that I need them but the mdt said not enough evidence originally then we got the scan showing inflammation so I am hoping it's going to be that way. It's so exhausting going around in circles.

Thankyou
09-20-2015, 03:26 PM   #313
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Ds started biologics about 4 months prior to the new rule has to fail all other drugs and prove its needed here. Otherwise I know the process would have been extremely drawn out.
Ds also has tramadol for his arthritis pain.
Just know it is classified as addicting here in the U.S.
It can als make you feel spacey .
Have only given it to Ds once
He broke out in hives /rash so we were advised to only try it again if absolutely necessary .
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09-20-2015, 03:31 PM   #314
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My younger daughter has been using Tramadol for quite a while now - it definitely does make her feel sleepy and sort of out of it but it also does help with pain. I don't think she would be functioning at all without it. She found that the extended release didn't work as well for her as the immediate release Tramadol, but of course, everyone is different.

My older daughter has also used it on and off and had absolutely no trouble weaning off it when the disease was brought under control.

Good luck with the biologics - really hope things improve soon and they can figure out a treatment plan for you!!
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09-20-2015, 04:40 PM   #315
valleysangel92
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Ds started biologics about 4 months prior to the new rule has to fail all other drugs and prove its needed here. Otherwise I know the process would have been extremely drawn out.
Ds also has tramadol for his arthritis pain.
Just know it is classified as addicting here in the U.S.
It can als make you feel spacey .
Have only given it to Ds once
He broke out in hives /rash so we were advised to only try it again if absolutely necessary .
Here you can get straight on biologics if you're very severe and the only other option is surgery (although you still have to go to the mdt) otherwise we have to show that other treatments aren't viable. For me immunosuppressants caused bone marrow suppression so I qualify that part easily. It's just a case of getting them to accept I'm flaring now.

Thanks for the warning re tramadol. I've had the standard release before but at a lower dose. I'm being watched pretty carefully so hope to avoid any problems. I had to sign for it at the pharmacy as it's controlled here now too.
09-20-2015, 04:48 PM   #316
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My younger daughter has been using Tramadol for quite a while now - it definitely does make her feel sleepy and sort of out of it but it also does help with pain. I don't think she would be functioning at all without it. She found that the extended release didn't work as well for her as the immediate release Tramadol, but of course, everyone is different.

My older daughter has also used it on and off and had absolutely no trouble weaning off it when the disease was brought under control.

Good luck with the biologics - really hope things improve soon and they can figure out a treatment plan for you!!
I've had the standard release ones before but always found they wore off very quickly. So the Dr suggested trying a higher dose but on extended release to see if that's any better. I've been on it for a few days so far and I'm definitely feeling some relief. I slept last night for the first time in 2-3 weeks.

My doctors are good at watching me with meds like this, and I only ever take them when things are particularly bad so hopefully I won't have any weaning problems.

Thankyou. I will give an update once I've seen my nurse and know more about where I stand.
09-22-2015, 10:55 AM   #317
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Feeling so wiped out today. I had to go out this morning and pick up some things for my mum's birthday, I was only out an hour but felt like I'd run a marathon when I got home. My legs are like lead, my head aches and I just feel totally drained. I have no appetite at all, there's no hunger there.

Tomorrow can't come quick enough. I seriously hope they have some answers for me.

It's going to be a long few months waiting for this scope.
09-22-2015, 06:13 PM   #318
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I hope they have some answers for you too! I truly hope all goes well gor you tomorrow and everything is quickly approved for you to move to the next treatment! Hugs!
09-23-2015, 10:03 AM   #319
valleysangel92
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Hello everyone,

I've just got back from my appointment with my IBD nurse.

The colonoscopy is basically just a formality and she can't see any reasons why I wont be getting biologics. The MDT meeting has said that they don't actually have a problem with me going on to the next level of treatment so there really shouldn't be any problems. She says my consultant is convinced so if anyone does say anything then they will sort it out.

She has specifically requested that my own consultant performs the scope this time as his procedures are always excellent and she feels I will be much more comfortable. She has also requested that I get given Picolax and that they do the scope within the next six weeks (we'll see).

She will see me in 7 weeks when she hopes we will be able to discuss start dates etc. The biologic I am getting is Inflectra. Its the synthetic version of infliximab which all new biologics patients at my hospital are getting tried on first. They haven't been using it for very long in comparison to the other drugs but she says they have some very promising results from it. It works just like infliximab and all the side effects etc are the same.

My screening all came back good, I have no sign of infection or anything like that. I just need to get a Hep B shot so she's writing to my GP to get that arranged.

She also thinks we should try a different pain control and has suggested Morphine Sulphate (MST) as she thinks this will work better for me. She says that the tramadol could be contributing to me feeling so wiped out and because the MST works in a slightly different way and therefore may suit me better. She will be writing about this as well but I already have a review with my GP on friday (fibro related) so I will ask then to see if she's willing to give it a go.

I'm feeling very relieved and hopeful that things are finally turning around and I'm being listened to.

Have I ever mentioned how great my nurse is?
09-23-2015, 01:30 PM   #320
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Glad you had a good appointment! My daughter has been on morphine sulfate and actually it worked a lot better for her than Tramadol (it is stronger than Tramadol though, so that wasn't a surprise). It still made her sleepy, but less so and she didn't have any other side effects from it.

Vey cool that they'e giving you Inflectra - that's not being used in the US yet!
09-23-2015, 04:07 PM   #321
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Lets hope this will finally work!!! Glad to hear you had a good appointment!
09-24-2015, 05:46 PM   #322
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Thankyou both . Honestly I'm so relieved. Don't get me wrong it's a big step but it's been a long time coming.

Maya- inflectra is pretty new here too, I think it's only been in use a few months. They say it's very promising though.

Next year the patent for humira ends too, so my nurse says there could be a biosimilar in the pipeline for that soon too. Which means if inflectra doesn't work then they have more to play around with than ever before.

I'm hoping I'll get the mst tomorrow. Not sure how willing the gp will be to prescribe it but hopefully there won't be any issues as it's come as a recommendation from the nurse.

Last edited by valleysangel92; 09-25-2015 at 12:31 PM.
09-25-2015, 06:26 AM   #323
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Hi everyone. All went well at the doctors. We're keeping the gabapentin the same for now as it seems to be working well.

Regarding the MST - My GP didnt want to just jump in and guess a dose since she didnt want to give me something thats too low and it be uneffective or give me too much and it wipe me out, so she's given me some oramorph to start off with. Its 10mg up to every 4 hours, and I have to record how much I'm taking. From this she will calculate the dose I need per day and this will allow her to work out the correct dose of MST ( which is slow release). We will have a follow up on the 5th October.
10-07-2015, 06:21 AM   #324
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Hello all,

Everything went fine on Monday, I have MST 15mg tablets to take every 12 hours. I have to take them by the clock and not wait for the pain to set in as they don't work instantly. I also have the Oramorph on a repeat prescription which I am to take for break through pain.

I have just got back from my first Hep B jab, have another booked for 4 weeks today. My poor arm is going to go on strike by the end of the month, I had my flu jab friday, and am due my B12 on the 21st too. Lush!

I still havent recieved my follow up letter for Allyson though. I usually get it on the first friday or saturday after I've seen her, so this is bugging me a bit. Usually I rebook at the desk on my way out but they said they couldn't do it because it was over 6 weeks (allyson thought they could do it if its under 8) and told me I'd get it through the post but there's nothing which is giving me a horrible feeling that the admin people have fiddled with the date (they have a habit of doing that, if a clinic is a bit full they'll move your appointment back rather than fit you in despite the medic specifically requesting that date). I'll give it another week and then try and chase it up, once I've figured out who I should chase it up with that is.

No news on the colonoscopy either, although that's really not a surprise.
10-16-2015, 06:02 AM   #325
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Hello everyone,

I mentioned earlier in the thread that I am expecting to have reconstruction surgery on my jaws sometime in the future, once bracework has straightened out my teeth.

I had an appointment with my orthodontist yesterday and discussed with her the matter of going on biologics. As some of you will know, you have to have a 2 week gap either side of the surgery with any biologics. Being on inflectra this hopefully won't mean skipping a dose, just tweaking it a little.

She thinks that once we have all my gaps from extractions closed up she will get into contact with my consultant and discuss the viability of going ahead and the logistics of completing the surgery. It is possible that they may decide at the time that my health is not stable enough to go ahead, or that there is too much risk of infection being on the biologics ( as the biggest risk with this op is infection, since you can't really cover your mouth).

At the moment she thinks it is acceptable as I have been told by my IBD nurse that if I need/want the surgery then they can work with it so she is happy to proceed for now.

Usually they would book the surgery and then contact you 4-6 weeks before with your date but this is obviously not a viable option for me, so they are going to provisionally put me in for next summer so that we all have as much notice as possible. They will liaise closely with my gastro team and myself to make sure that the process is as safe as possible and that if anyone is not happy they have the opportunity to say so.

My othrodontist has also said that we should consider changing the operation. Originally I was supposed to be having double jaw reconstruction - moving my top jaw up and my bottom forward, but this is a very complex operation. We had a little discussion and she brought up the idea of only having surgery on my bottom jaw as this is what bothers me the most anyway (I cant bite properly because my bottom jaw is too far back for me to tear food). This would make the operation less complex and decrease risk of infection.

It's still sinking in at the moment but I am feeling ok about things for now. Its going to take a while to get used to a different surgery proposition but I think it would be the right balance between correcting my bite and the appearance of my mouth and keeping all risk to a minimum.
10-17-2015, 02:37 AM   #326
Cross-stitch gal
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Took me a bit to read through all this and understand it. Sounds like they're doing pretty good and have your health and everything else in mind (which is a very good thing). I hope all works out smoothly for you. I know you've had lots of steps forward and backward lately. Hopefully the forward steps will continue for you with this (I think you understand where I'm going). Looking forward to seeing how you're doing!!!! Lots of hugs.
10-19-2015, 09:44 AM   #327
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It's a lot to get your head around thats for sure. I'm not seeing them again until December now so I have a while to talk to my IBD team and everything to make sure they are happy with things and see if there's anything they want me to find out. I do understand where you're going .

I got a letter this afternoon asking me to call my drs and make an appointment with one of the GPs. Doesn't give any clue as to why, so I've called and managed to get an appointment for tomorrow morning (which was very lucky). I wish they'd give some clue about the reason, I hate being unprepared.
10-20-2015, 08:10 AM   #328
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Hello,

I've not long got in, the appointment was to discuss the results of my DEXA scan. The overall result is osteopinia as before. My back / lumbar region is the same as before but my hips have deteriorated by a further 4.6%. I don't know a great deal about all of this but that seems quite a large amount to loose in 3 years particularly as a 22 year old with an excess of calcium.

They want to do some bloods just to check there are no other underlying conditions which could be contributing to this (because apparently Crohns, Coeliac and my body's inability to correctly use calcium just aren't enough or something). I'll be having those done tomorrow as I have to go down for my B12 anyway

Edit - The doctor gave me a number to call to check up on my appointment, it put me through to my consultants secretary who was able to check the system. I'd been put on the follow up waiting list, with a target date of the 11th November but it seemed like it could of been after that date. I explained about being on steroids and being close to running out (I have enough to get up to the 11th and a couple of days after but thats all) and she said that's fine and they'll sort it all out for me. It wouldn't of been a problem if she'd said it wouldn't be that date, as I could have emailed my IBD nurse to get a prescription sent but I needed to know if that was the case.

Last edited by valleysangel92; 10-20-2015 at 08:29 AM.
10-20-2015, 09:06 PM   #329
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valleysangel - sorry to hesr you are sick. I know it's horrible to wait months for a test while in pain just be able to be treated! And you're right, the docs don't realize how depleting and awful these procedures are. I see you are about to, or are already on biologics. I did those as well, but the therapy that worked best for me (and has kept me in remission for almost a year) turned out to be AntiMAP therapy. Since you are a moderator, I assume you've considered it, but just wanted to give you a real, live story of someone who's been successful. Honestly, after 25 years of having Crohns, I never knew I could feel this good. I realize I've been sick for most of my adult life, but just dealt with it as if it were normal. There is also a way to get tested for MAP prior to starting treatment if that is of any interest. I know each person is different with their treatment decisions and comfort level for therapies like this that haven't quite been widely accepted, so I wish you luck with whatever treatment you choose and hope for a full recovery.
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Currently on: Anti-MAP therapy and loving life! Full remission since Jan 2015. Clarithromycin, rifampin and low dose naltrexone. (Levofloxicin had too many side effects so discontinued after 5 months.) Resources on human MAP and Crohn's here: HumanPara.org.

Past (failed) Treatments: Remicade, Humira, Prednisone, Pentasa, Azulfadine, Lialda, No gluten/dairy/sugar/coffee or processed food in general. Flagyl worked but not long term.
10-22-2015, 12:37 PM   #330
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Hi there

I don't know how things work where you are. Are you in R.O.I? Unfortunately at the moment it's still very much in early days for the map vaccine here. It's basically still in trial criteria so you have to show that no conventional treatment is safe or effective for you. To be honest I don't think it's even available in South Wales yet, I don't know of anyone close to me being on the programme. Even in England where the trial was started you have to pass very strict criteria and try all conventional medicines first before your doctor can apply for you to be started on anti map.

I am glad to hear that you have found something that is working for you. It is obviously early days for this treatment but from what I've seen it looks like promising progress. I hope it continues to keep you feeling well. For the moment i am willing to give the biologics a go, they are big medications I know but that's not too much of a problem for me. If it got to the point that I needed it of course I would go for the vaccine but it's not really an option for me at the present time.
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