I have now changed to syringe style needles and have found it so much easier to inject myself as I have more control over what's happening!
However with the stress of losing Dad my stomach is back to where i was a few weeks ago, and leaving the house is becoming stressful again. I hope things change for the better soon x
So on Christmas eve I went to visit my father, after trying to enter his home a few times to deliver is birthday presents and Christmas cards, but having had no luck getting in I become worried. Dad lived in the same street as the police station so I popped in to ask for advice. An officer and myself went back to dad's home and he confirmed what I had been ignoring....post was lying on the mat at the door. A few minutes later reinforcements come to gain access to Dad's. The door was smashed in while I stood crying in the street watching chirstmas and police lights refect in my family homes now dark windows. I watched the small light of the police torch dissapere in to his bedroom, moments later the lady office came out, I asked 'is dad's okay' Thinking he must be cross that door is smashed in!!
She simply said 'no dear' and hugged me.
Now I just feel different, I am with out a dad and that feels not right. He is not there where he has always been no matter what happened between us...good or bad...I knew he'd be there and now he's not!
My stomach feels sunken and empty, I feel sorrow and guilt. Most of all I miss him.
Well its been a while, but I've been totally bogged down with everything I couldn't really find the energy to write about it all.
In the last 5 weeks I've been .....
*passing blood on average 25 times a day
*seen the consultant twice, 1st time I was left in tears.
*started injecting drugs at home with no guidance,
*had a chest x - ray
*been for 3 blood tests,
*handed in two stool samples,
*had the 'health care at home' team visit, *been to the eye hospial,
*seen Gp twice,
*had a pressure head ache for ages,
*been to a Sexual counceling session,
*had two lots of dental treatment,
*started steroids again,
*started some horrible powder bile producing drink,
*received numerous phone calls from the new Ibd nurse,
* got admitted to hospital, which felt like a dream come true only to be told 'no consultant don't want you here'
*sat a maths exam
*been to a wedding
*prepared for my 4 years old birthday party.
Soooooooooooo yeah bogged down by it all.
Anyway bleeding has now calmed down lots and I visit the loo 5 ish times a day, how ever I feel pretty sick most of the time and like I've swallowed a brick.
Today I feel awful, probably no more unwell then I have been for weeks if not months, but I have just vomited from coughing, I have had this problem for weeks alone and was told by my GP to give it time and be paticent. Until it shifts I can't get the flu inject and I may not be able to start my new drugs.
I have also had very sore eyes for 8 weeks on and off, I have spoke to the GP twice about it and nothing has really happened, they have given drops which gave some relief for the 1st day but that has now wore off.
I also suffer with sore skin in my private area which is embarrassing and extremely uncomfortable, nothing seems to help that area! I don't feel comfortable talking to my consultant about this issue but I think I will have to next time I see him.
I have also woke up to 2 mouth ulcers, so top to tail all feels broken. The result of all this is me feeling AWFUL!!!!
So not much has been going on here, just waiting for results to been seen by consultant and/an appointment to discuss results.
Today I received a letter to say the infliximab treatment is no longer work as a lot of antibodies had been found in my bloods. It seems I have to switch to Humira which has to be injected at home.
I didn't really want this treatment, not cos I have to inject that's not something to bother me, but I kind of just didn't want my home to feel too clinical, probably sounds stupid but that's just how I feel!!
I will wait to see when this gets sorted out and what advice/information I will be given. Not feeling very informed at the moment and like I don't have much choice 😐
Oh yeah I did go to Lego land at the weekend and my insides where very well behaved!! Had a great time there would like to go again when the kids are older so we can go on the rides 😄
Here's my pictures of good and bad days! Crohn's and colitis UK are running this campaign to help raise funds!!
So just had a scan of my small bowel, the preparation drink consumption is really the longest part! You have to drink it slowly over about an hour. It's neither pleasant or horrible, it makes my teeth feel odd and when it hit the bowel prepare to run!!!
Laying in the machine is uncomfortable as boobs and arms seem to get in the way. But 20 minutes of breathing in, holding in then relaxing as instructed isn't too bad if I get some answers!!
