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


 
01-11-2017, 07:30 AM   #511
valleysangel92
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Hey all,

I just realised I totally forgot to let you know what's happening with my heart! When I went in for my jaw surgery, the anaesthetist tracked down the results of all my tests and found that the Echo came back clear.

The cardiologist has decided that it is likely my elevated heart rate is the result of my multiple health conditions and not something structurally wrong with my heart itself. He is happy that for the time being nothing needs to be done, I could have been put on medication, but that comes with it's own risks and complications and he feels that with me being so young the risks currently out weigh the benefits. He has placed me back in the care of the GP but if the tachycardia starts to interfere with my day to day life or impacts on my treatments then they will instruct the GP on how best to control it.

There is some chance it will get worse in the future and need medicating or further investigation, but at the moment he thinks that my heart is just having to work harder due to everything else that is going on in my body. He doesn't think there is any correlation with mental stress ( it had been suggested by other doctors that I just got stressed in hospital) as when I had my appointment with him I was totally calm and my blood pressure and breathing rate weren't raised. I do have elevated blood calcium so there is a chance that while it's not having a massive effect in general, it could be increasing my heart rate.

In other news, I'm now on B12 injections every 4 weeks as I am allergic to the 12 weekly jabs, so I am in discussion with the nurses at the GP surgery regarding learning to self inject as visiting them every 4 weeks is a really expensive (bus fare) and will be very inconvenient when I eventually go back to work.

My jaw is healing very well, I have been discharged from the surgical team and am just following up with my orthodontist. I have had my fixed braces removed and just have a clear retainer which I wear in bed. I still have some numbness on the left hand side of my mouth, and am still getting some pain there as the nerves are repairing. There is a chance that some of the numbness will be permenant but it's not causing me too many issues so I can live with that. I can pretty much eat what I like now, but I have to be careful with very hard or really chewy things still, as my mouth gets very achey and a bit painful if I over do things. Full healing will take a year or more, so I still have quite a long way to go, but at the moment things are looking good.
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Nicola
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
01-11-2017, 05:14 PM   #512
Cross-stitch gal
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Yay that things seem to be working for you!!! Boy, it's been a long road and still a long one to go. But, it's about time that something is going right for you! Sending you lots of hugs!!!
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Diagnosed:
Ulcerative Colitis/IBD 1996, Iritis 2001, Ulcerative Proctitis 2013, Indeterminate Colitis 2016, Remission 2017, Hand Eczema

Current Meds:
Pentasa 1000mg 2xday or Mesalamine DR 1.2gm 2xday, Canasa Suppositories (when needed) 1000mg 1xday, Tylenol 3 with codeine 300-30mg (when needed)

Non-Meds:
600+D Calcium 2xday, Multivitamin, 65mg Iron 1xday, Fish Oil 1000mg, Vitamin D3 5,000 I.U., Eye Drops 2xday


UP Support Group http://www.crohnsforum.com/showthread.php?t=68350
01-11-2017, 05:15 PM   #513
ronroush7
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Yay that things seem to be working for you!!! Boy, it's been a long road and still a long one to go. But, it's about time that something is going right for you! Sending you lots of hugs!!!
Amen

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02-02-2017, 08:55 AM   #514
valleysangel92
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Hey guys,

so after my last update things have been a bit rocky for me, I've been really up and down, going from feeling relatively OK to not being able to move with pain and nausea in the blink of an eye.

It's really hard to tell if the vedolizumab is having any affect as of yet, as my symptoms are really fluctuating, and we can't tell if that's because its starting to kick in and reduce the inflammation or if its just because that's what my Crohn's has always been like. Most notably, after my 4th infusion i had about 2 weeks where I didn't feel so bad, I still had pain and nausea, but had more of an appetite and the pain was bareable. The 3rd and 4th weeks were horrible though, I was in so much pain I didn't even get out of bed some days which is really not like me. I also had really bad nausea which kept me up at night and persisted even with metaclopramide and cyclizine.

I had my 5th infusion on monday and had a chat with my IBD nurse about how things are going. She told me that although official data says that they should expect improvement in symptoms at week 14, they are finding that with many Crohn's patients there isn't a noticeable difference until week 24, so it could be another 10 weeks or so before we can tell if this is really going to work for me. She said there are things they can try like moving infusions closer together if need be, but for now my infusions will start being every 8 weeks. She advised I speak to my GP about anti sickness options and tweaking my pain relief and also look at CCUK's information on fatigue. My most recent blood tests look pretty good but its fairly well known that my blood tests don't always reflect what's actually happening, and because of the way vedo works it's quite possible that the symptoms will linger for a little while even if it is working.

I went to see my GP yesterday and have changed my anti-sickness to prochlorperazine tablets to see if that makes any difference. We added in codine to my pain relief so that i have an intermediate option between paracetamol and oramorph because previously I have avoided taking painkillers because I didn't want to take the morphine all the time and didn't always feel the pain was worth it but the paracetamol doesn't do anything to improve things.

Ironically today I feel slightly better, I'm unsure if thats because I had the infusion monday and B12 tuesday, or because my body is just trying to wind me up, but I am keeping a symptom diary to see how things progress and try to pick out a pattern. I am thinking that maybe what I'm experiencing is the vedo "wearing off" as I get closer to the next dose, and then kicking in a few days later. In which case I am hopeful that bringing the infusions closer will be an option for me. My IBD nurse seemed to think it would be easily doable but the final decision would unfortunately not be hers.

My jaw is healing well and I am eating pretty normally. I still have loss of sensation on the left side and it's been quite tender the past few days but nothing too alarming. I think its just the changeable weather we have. I think I'm also coming down with a cold which I imagine would have some affect on it too.
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