I haven't blogged for sometime, i've not felt i had anything new to say or offer a great deal of positivity. I haven't been experiencing major problems, though have been in limbo waiting for an mri scan and then a follow up consultant appointment.
So, I have remained invisible and quiet, not wishing to add to or complicate the minds of other sufferers or their families.
I finally saw my consultant on thursday, i am on pretty open and honest terms with her, shes cared for me for so long. Shes admitted that she does withhold some information or potential complications from me. The reasons being obvious.
The mri contradicted the earlier ultrasound. Rather than a dilated bile duct, the original problem i was advised about, i have cirrhosis of my liver. This cirrhosis is as a result of long term crohns, its complications and a lifetime of medications.
So having gone in assuming it was one thing, i am now told a further chronic complaint has developed as a result of my crohns. The consultation went on, my consultant telling me she feels she can manage the liver, will attempt to hold it in check, though all future drugs and diet will need to take the liver into account. She explained to me my blood clotting problems are obviously as a result of the low platelets, large spleen and low vitamin k levels, though the liver is now a factor.
My consultant tells me i need an endoscopy to check for any oesophagal vareces, which can develop as a result of the liver cirrhosis.
I am also referred back to the dietitian, both for the liver damage and my crohns disease.
On returning home, literally within an hour i have a big bleed from the stoma into my bag, not great! Because of the quantity i have to get paramedics to take me in, who do an excellent job in maintaining my vitals are good, getting a line in, and doing all the other things that are relevant.
I got straight into resus, where i was placed on heart monitoring, they are naturally thinking i may have internal bleeding, and spend sometime trying to ensure they will not overlook something that could cause an immediate crash! I'm afraid i'm getting pretty accustomed to these dashes to A+E and urgent intervention. The liver is now an additional aspect.
After close monitoring, regular probing of my abdomen by A+E doctors and then surgeons, they admit me to surgical, to closely monitor my state and be prepared for anything.
Fortunately, i am also given additional clotting aids to help , this seems to stem the stoma bleed.
Through the night my condition begins to improve, i begin to feel assured that this time i have avoided any internal bleeding.
In the morning the surgeons suggest 'burning' or cauterising around the stoma, or even another collection of sutures. As the day progresses, nil by mouth is removed i can eat and drink and no more bleeding occurs. As evening arrives, the surgeons do their rounds, having done all their daily list in theatre. The surgeon, a different one, looks closely at the site and feels assued the bleed is over for now. This being the case, and the realities of life regarding hospital beds, i am told i can go home. Only with the proviso that i will return if anything deteriorates, as if i would somehow not!
I cant say im totally happy with this. All of us know the protective mental and physical cotton wool the hospital and the medics offer us at times.
So into the evening i depart, off guard having prepared for a further night of close monitoring.
Its after getting home that the acceptance of another added chronic problem to the crohns begins to dawn on me. I was given a fair bit of information of possible elements that might happen from the liver damage, its a lot to take in and i like to think i am someone who has experienced many of the secondary problems crohns can bring.
I've got to admit, it is a little frightening, especially with my blood clotting, platelet and spleen problems. i suppose its inevitable that you go into a shell, thinking about the future and drifting into doubt and negativity. I have tried so hard to focus more on the positives as opposed to some of the unfortunate aspects of crohns. I take this as a personal blow really, though i do know there are many suffering much more than me, its easy to slip into that frame of mind!
When i started blogging i hoped to be able to accentuate how much can be achieved with crohns and a stoma, i do still think that is the case. I still think theres value in blogging and trying to be honest and open without making it sound like every person with crohns will develop major complications.
I'm certain that many sufferers will manage to avoid so much of the secondary conditions, i hope that's the case anyway.
When my crohns started the treatment was 'heavy handed' and the consequences weren't always considered. I'm sure many people starting out with the illness will be monitored closely and scanned and tested should complications develop. Its important for all of us with IBD to be aware that we need to be in control of our treatment and always ask the relevant questions and consider the long term secondary problems.
Ive had a weekend of moping and feeling sorry for myself., been able to have a mental consideration of what it all means for me and look on the gloomy side. It been oddly therapeutic, exploring the demons of doubt and despair. In the end I must accept that its another thing to deal with, like many others that seemed like the 'end of the world ' at the time. I know its not always going to be easy to deal with but i'll worry about that when it happens.
I blogged this after such a while not to get sympathy or attention, nor do i want others to think they have this in store. If there's one thing about this illness its the fact that everyones so different. I want anyone reading this to simply be informed and aware. I want them to be upbeat when they are feeling well, we have to make the most of better days and tolerate the bad ones.
I really do want people who are new to IBD to get as much information as they can and 'hound' the medics if necessary, with as many questions and concerns.
Treat the professionals with respect, but it's our body, we must call the shots!
I start my 52nd year on the planet next week, don't rush with the cards and gifts that wasn't a hint... I want that 52nd year to be a good one and intend to make the most of the better days and try not be a total pain on the bad ones! I will do my utmost to deal with blows and knock-backs as best as I am able, I' sure I won't always succeed.
At least i've got my excuses in first!
No comments:
Post a Comment