Symptoms increasing..again.

[KayleighMeek]

Hello everyone,

Well recently I have had a lot of joint issues causing me to be stuck in bed and not able to stand for any length of time. Last Tuesday I had a steroid injection and it has made a massive difference to my joints there is still pain, stiffness and swelling but it is 10 times better than it was.

Anyway that was the main issue since last year my GI was convinced that my crohns was in remission but I have never thought this as my crp although was a lot lower was still not normal and I was having on and off symptoms such as blood, pain and D. The GI department through out all my recent problems really haven't been as good as they have been in the past and this has made me question if I should let them know what is happening now.

Now my typical crohn's symptoms seem to be returning even stronger D, mouth ulcers, painfull skin tags, some bleeding and pain during and after eating, I also had a blood test last week and now my crp has shot up and I am slightly anaemic. I am due to start cimzia some time in the new future I just hope it is soon I really don't want this to carry on to a point where I am really sick again but also as I have been let down by my GI a lot recently don't see the point in letting him know because I really don't think they would do anything. My rheumatologist has prescribed the cimzia the GI was meant to attend the appointment when this was decided but they didn't not surprised. But what is very annoying I was trying to move my appointment forward when I was suffering but they said best not to move it as your GI said he would attend so I had to suffer longer than needed.

Sorry if this is a bit rambling but I needed to write it down and get it out so I can stop thinking about it as much.

 

[caytee]

Sorry youre going through this. Maybe you need to switch GIs. As I read it your dr is not as attentive as you'd like.

Sorry

 

[Honey]

Hi there
I see you have been on a number of meds some causing Pancreatitis. You have had a tough time. The same happened to me until Infliximab infusions worked, so far!! I am sorry. You need an understanding doctor but I know, in the U.k you cannot choose your consultant. I hope your pain issues in your joints gets sorted and you feel better soon. Let me know how you are .Best wishes.

 

[KayleighMeek]

Thank you both. The pancreatitis was the most painful thing I have ever experianced the second time we had to phone an ambulance as the pain was so severe I couldn't move.
I thought my joints were doing a lot better but I went round a friends tonight and I really started struggling walking again and the pain is increasing. At the moment I just can't see an end to this ever I wouldn't mind if I could get on with normal things but a lot of the time it's not possible. Luckily the friend I went round I have known since we were kids so she is really understanding and had made sure there was a variety of food so I could eat something but I struggled getting home after. I really want to get this sorted I am meant to be going to Cornwall on Wednesday I hope that I am going to be able to cope.

 

[Honey]

Hi there,
I hope you feel strong enough to be able to go to Cornwall on Wednesday. The change of scenery will do you good. I do hope you get relief from pain. I am on steroids for recent pain I have been having in my legs and arms,so I understand the struggle! Best wishes, let me know how you are doing.

 

[KayleighMeek]

Sorry to here you are suffering to it is so awful to deal with hopefully the steroids are helping you.
I am still in a lot of pain but my partner came home this afternoon after being away since Friday he said to me he could tell something was wrong when he phoned last night but I just kept quiet I didn't want him to worry whilst he was away. He is always so good with helping me out and cheering me up so that is helping.
After saying about a friend being so understanding I then got a txt from a friend asking if they could come over today I put "I am in today but I'm really not feeling good and my legs are really painful so will probably be best to leave it today x" she is one of the ones I am going to Cornwall with so it won't be long until I see her but I just got a txt message back saying "Ok". I know she is shitty with me she often gets like this I just can't deal with that at the moment, I know a lot of people don't have a clue when it comes to living with a long term illness and how much it can vary day to day. Like yesterday I felt great up until 9pm then it started but I think people think I make up how severe it can get even with the rheumatology department when I was telling them how bad I was they couldn't believe it because of the medication I was on, that is what one of the nurses said to me.
Also I am not always the best at saying how I truly feel and I will struggle on so people assume there isn't anything wrong like a lot of people on this forum but it comes back and it bites you in the bum. This forum has helped me become more open but I still struggle with it anyway that's another rambling statement.
I have got a bit desperate and I have taken some ibuprofen I really needed some relief I know its not the best but it seems to be helping.

 

[Honey]

Hi there,
I hope you are in less pain now. It is good you have an understanding partner: he is a treasure! On the whole people can be dismissive! I have just had a phonecall from a friend I haven't heard from for a long. In telling her I have been very ill with meds not working for me, now on Infliximab, she interrupts me . She knows two people who live near her ,they have Crohns too, and there is nothing much wrong with them, they are just getting on with their lives!!!!!!! That is amazing!! Crohns is not that common, like the cold. It is good to be vent with those who understand because they are there too!! Have a lovely, relaxing time in Cornwall.:sun:

 

[KayleighMeek]

Today I went to the GP and they have signed me off for two weeks :-(
And now I am not going to Cornwall I am just not well enough to sit in a car for 4 hours and I would need to take a wheelchair and where we were going is not very wheelchair friendly. I am really dissapointed but I know it wasn't the best choice to go have to rearrange it for another time :-(

 

[caytee]

I'm super sorry to hear that you've got to deal with the pain this weekend. I understand completely the fluctuation of pain and symptoms. Glad to hear that I am not the only one who has good days, weeks, then maybe only a few hours during the day. I too have a bit of arthritic pain, however I do not believe to your extent. But it is constant and at times more debilitating than the gut issues, all the more frustrating. Stay tough and hope that you enjoy your enjoy. Maybe the change of environment will give you a few good days.

some hope and well wishes for you.

 

[Honey]

Hi there,
Sorry to hear you are not well enough to go to Cornwall, but perhaps it was a little ambitious of you to think of traveling on such a long journey. If the weather is good, you should take a day away , if train is convenient, to the beach. There is nothing to beat the sea air for raising ones spirits!!!! A change of scene, no matter how small , is good when you are battling illness.
Let me know how you are. Best wishes .:well: