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


 
09-04-2014, 03:22 PM   #31
valleysangel92
Moderator
 
valleysangel92's Avatar
 
Join Date: Dec 2012
Location: United Kingdom

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

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


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
09-10-2014, 12:24 PM   #32
valleysangel92
Moderator
 
valleysangel92's Avatar
 
Join Date: Dec 2012
Location: United Kingdom

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

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

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

If everything is ok next week I may be allowed to go a month between my appointments.
09-10-2014, 01:53 PM   #33
Cross-stitch gal
Moderator
 
Cross-stitch gal's Avatar
 
Join Date: Dec 2011
Location: Vancouver, Washington

My Support Groups:
Sorry to hear about the blood. That doesn't sound like a whole lot of fun having to take 4 attempts. But, thankful to hear that things seem to be going well. Hopefully they'll finally continue getting better for you. Thanks for the update. xxxx
__________________
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
09-10-2014, 03:19 PM   #34
DJW
Forum Monitor
 
DJW's Avatar
 
Join Date: Jul 2013
Location: Ontario

My Support Groups:
Hang in there valleysangel92. Sometimes vary small steps are all we can hang on to. I hope you're able to go a month between visits. I had a whole month with no doctors visits. It was fantastic. :-)
__________________
Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:
http://www.crohnsandcolitis.ca/site/...tis_Canada.htm

Living in Ontario with no drug benefits?

Trillium Drug Program:
http://www.health.gov.on.ca/en/publi..._trillium.aspx

Dave
09-10-2014, 03:36 PM   #35
valleysangel92
Moderator
 
valleysangel92's Avatar
 
Join Date: Dec 2012
Location: United Kingdom

My Support Groups:
Thanks both -

Cross-stitch gal - unfortunately it's not a new thing for me have had up to 8 attempts in the past, including feet. I have some stunning bruises now! Xxx

Djw - thanks, wow that sounds like a dream I can't remember the last time I went a whole month with out some kind of hospital or doctors appointment. Unfortunately I'll have to wait a while longer, even if my crohns visit goes to a month, I have to go to the hospital for my orthodontic braces (complex case, need surgery), and have to book my flu vaccine ASAP, and have coeliac clinic to attend next week (3 months late) . I can dream though.
09-10-2014, 03:41 PM   #36
DJW
Forum Monitor
 
DJW's Avatar
 
Join Date: Jul 2013
Location: Ontario

My Support Groups:
O my gosh. You deserve a brake!
09-10-2014, 07:43 PM   #37
RickUK
Senior Member
 
Join Date: Apr 2014

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

I'll be seeing either my consultant or the nurse next week anyway and will ask them if they know how long the wait usually is.
Hey I;m in South Wales too! Small world haha! Apologies for the slight off topic response lol
09-12-2014, 04:29 PM   #38
valleysangel92
Moderator
 
valleysangel92's Avatar
 
Join Date: Dec 2012
Location: United Kingdom

My Support Groups:
Haha awesome, valleys girl myself . How do you find your care?


On another note, I started my prednisolone taper this morning, and tonight the pain is worse than its been for a couple of weeks. Hopefully it's just a coincidence. Really not keen on being stuck on these things any longer than totally necessary!
09-12-2014, 08:02 PM   #39
RickUK
Senior Member
 
Join Date: Apr 2014

My Support Groups:
Haha awesome, valleys girl myself . How do you find your care?


On another note, I started my prednisolone taper this morning, and tonight the pain is worse than its been for a couple of weeks. Hopefully it's just a coincidence. Really not keen on being stuck on these things any longer than totally necessary!
I live in the valleys too! Awaiting an appointment in next few weeks at P.O.W. hospital as my calprotectin test came back at 752, 50 and under is normal so all the GI is confident of at the moment is that inflammation is present for sure
09-14-2014, 01:36 PM   #40
valleysangel92
Moderator
 
valleysangel92's Avatar
 
Join Date: Dec 2012
Location: United Kingdom

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

Do you mind me asking how long you normally wait for scopes? I've been waiting since July for an 'urgent ' (I saw my GI tick it) scope and there's no sign, no one at the hospital seems surprised though.
09-14-2014, 02:08 PM   #41
RickUK
Senior Member
 
Join Date: Apr 2014

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

Do you mind me asking how long you normally wait for scopes? I've been waiting since July for an 'urgent ' (I saw my GI tick it) scope and there's no sign, no one at the hospital seems surprised though.
My sigmoidoscopy ... I was referred in March waited about a week or 2 for "prioritising" by the GI who then marked it urgent. Was seen August 18th. This next camera and MRI is quicker as a GI himself has actually referred me, as oppose to a Dr. So im actually looking at 6 weeks maximum this time. Got to ring tomorrow infact to discuss best date and time with their booking team and do some questionnaire????

Hope yours is soon
09-14-2014, 02:13 PM   #42
valleysangel92
Moderator
 
valleysangel92's Avatar
 
Join Date: Dec 2012
Location: United Kingdom

My Support Groups:
My GI referred me directly this time, so goodness knows how long people who are referred by GPs are having to wait. Thanks
09-14-2014, 03:36 PM   #43
RickUK
Senior Member
 
Join Date: Apr 2014

My Support Groups:
My GI referred me directly this time, so goodness knows how long people who are referred by GPs are having to wait. Thanks
Exactly. Being referred by a GP I waited roughly... 24weeks or so. This time is 6 via the GI. Suppose they got the authority to push it through quicker
09-15-2014, 07:39 AM   #44
valleysangel92
Moderator
 
valleysangel92's Avatar
 
Join Date: Dec 2012
Location: United Kingdom

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


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

Hoping this is just a coincidence and I won't have to come off Aza completely.
09-15-2014, 09:05 AM   #45
RickUK
Senior Member
 
Join Date: Apr 2014

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


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

Hoping this is just a coincidence and I won't have to come off Aza completely.
Sorry to hear that hope you feel better soon! I have got my date for colonscopy now it's 20th October so I hope yours is soon too
09-16-2014, 11:32 AM   #46
valleysangel92
Moderator
 
valleysangel92's Avatar
 
Join Date: Dec 2012
Location: United Kingdom

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

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

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

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

Last edited by valleysangel92; 02-12-2015 at 05:19 AM.
09-16-2014, 02:06 PM   #47
DJW
Forum Monitor
 
DJW's Avatar
 
Join Date: Jul 2013
Location: Ontario

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

Are you in hospital?

Sending you my continued support.
09-16-2014, 02:20 PM   #48
valleysangel92
Moderator
 
valleysangel92's Avatar
 
Join Date: Dec 2012
Location: United Kingdom

My Support Groups:
Yeah you hit the nail on the head there.

I'm not in hospital at the moment, almost had to go to A+E yesterday, pain was worse than anything I've had before and was really struggling to eat or drink because it made the pain worse each time I sipped even water. Thankfully managed it at home with pain relief advice from my nurse. She thinks it was an Aza side effect... So I skipped yesterday's dose and took half dose today as per her instructions. My mum stayed home with me and said she could see my whole body shake with each spasm and my stomach was really swollen. I have an appointment with my nurse tomorrow. Hopefully we will work things out.
09-16-2014, 02:21 PM   #49
UnXmas
Banned
 
Join Date: Oct 2012

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

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

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

I don't know if it's something you'd consider or not, but maybe a counsellor would be able to help you with the emotional side. I'm sure dealing with such a tough chronic illness would be more than enough reason - you might even be able to get to see someone on the NHS. Personally I've never found that type of thing useful, but I know a lot of people do. It would at least mean you had someone to talk to who you didn't feel you have to worry about upsetting.
09-16-2014, 02:25 PM   #50
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
I'm sorry you aren't able to live the life you want at the moment but just know that this doesn't mean that next month or next year it won't be totally different. Yeah, this is going to be a chip on your shoulder for life but hopefully you will be able to manage it and mostly live out your dreams.
09-16-2014, 02:54 PM   #51
valleysangel92
Moderator
 
valleysangel92's Avatar
 
Join Date: Dec 2012
Location: United Kingdom

My Support Groups:
UnXmas

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

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

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


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


Ngng - Thankyou, I am trying to remember that. I think it's just seeing all the reminders and all my friends graduating is having an effect, but I know it will get better, thankyou.
09-17-2014, 08:36 AM   #52
valleysangel92
Moderator
 
valleysangel92's Avatar
 
Join Date: Dec 2012
Location: United Kingdom

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

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

Last edited by valleysangel92; 09-17-2014 at 11:12 AM.
09-17-2014, 12:07 PM   #53
RickUK
Senior Member
 
Join Date: Apr 2014

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

Most of my bloods are ok, phosphate is very slightly low but that's nothing a few glasses of milk won't fix. Inflammation markers are slightly up but not enough to be a huge concern.
By inflammation markers do you mean CRP?
09-17-2014, 12:17 PM   #54
valleysangel92
Moderator
 
valleysangel92's Avatar
 
Join Date: Dec 2012
Location: United Kingdom

My Support Groups:
No my CRP was alright I think, the one that was high was neutrophils (not sure of spelling) . She said it's common for them to be raised when someone has chronic inflammation or is generally poorly.
09-17-2014, 02:49 PM   #55
valleysangel92
Moderator
 
valleysangel92's Avatar
 
Join Date: Dec 2012
Location: United Kingdom

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

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

If I'm on the waiting list for the other hospital where I have to go when I'm an inpatient and for my scans and coeliac check ups then it's a case of sit tight and wait, apparently they are having a bad time clearing their lists, so 3 months would be lucky there.
09-18-2014, 04:52 AM   #56
UnXmas
Banned
 
Join Date: Oct 2012

My Support Groups:
You mean there are actually NHS hospitals with free parking?!

Finding the right surgeon is so important - definitely worth waiting for.
09-18-2014, 04:58 AM   #57
valleysangel92
Moderator
 
valleysangel92's Avatar
 
Join Date: Dec 2012
Location: United Kingdom

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

I'm hoping it'll be the gi I've been seeing in clinic recently, but it could be any GI really.
09-19-2014, 05:47 PM   #58
valleysangel92
Moderator
 
valleysangel92's Avatar
 
Join Date: Dec 2012
Location: United Kingdom

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

I'm very happy with my current IBD team and have no concerns at all about being left fully in their care. They are worth their weight in gold to me for the care they have given me since June.
It's a small victory, but it's still a win. Yay.
09-30-2014, 10:42 AM   #59
valleysangel92
Moderator
 
valleysangel92's Avatar
 
Join Date: Dec 2012
Location: United Kingdom

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

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

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

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

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

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

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


Right. Rant over. Socks being pulled up.

Last edited by valleysangel92; 09-30-2014 at 11:28 AM.
09-30-2014, 04:40 PM   #60
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

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

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


All times are GMT -5. The time now is 05:33 AM.
Copyright 2006-2017 Crohnsforum.com