I have Crohn's...hmmm hang on I thought I had UC!! Still trying to get my head around this. I had my appointment last week, and was so nervous. I was greeted by the Prof, so I kind of knew there and then with his hand shake that it wouldn't be good news. Otherwise I would have been greeted by his Spr. The news was I had ulcerations and deep fissures and biopsy show granuloma's.....he was getting too it but I said "So I have crohn's then!", "Yes" he said. I was in tears and thumped the chair arm with my fist a few times, not my finest moment. Apparently I'm in the lucky 5% of people who are diagnosed with UC, have pouch surgery and then are told they have Crohn's. Well I don't want to be in the 5%.
The plan is to have surgery to create an end-illeostomy (stoma) and defunction the pouch. The Prof would not recommend more pelvic surgery because of my determination to have babies. I am not mentally strong enough to have my pouch removed and bottom sewn up just yet. We are hoping the Crohn's I have will be more manageable when its not being in use because of the stoma. I am hoping for things to back to how they were before take-down only three months ago. We are hoping that this will give me the best chance to be able to have children.
Meanwhile I am on two types of antibiotics which over the past two weeks have really helped things. Going to the loo is less painful and I am taking less pain killers which is great. The antibiotics are making me feel really sick and are notorious for giving you a bad tummy. So my guts are really aching.
Emotionally I'm all over the place, and feel so overwhelmed by the thought of having a permanent stoma even though it will be a huge relief when I have one again. Luckily I start counselling in two weeks so that will help. Surgery is three weeks away so I am trying to prepare myself. I saw some great advice on-line which said to write yourself a letter which describes all the pain etc that you are going through so that on the days when you feel sorry for yourself and are maybe having troubles with your stoma you can be reminded that things used to be a lot worse. I am writing my letter at the moment it is nearly three pages long and I haven't finished yet! lol
Wishing you all a happy day, keep strong x
Monday 25 June 2012
Saturday 16 June 2012
Examination Under Anaesthesia
Hello :) long time no blog!
I've been avoiding writing for a while as I've needed peace and quiet and have not felt up to it. I don't know where to start! (sigh)
I had my EUA (Examination Under Anaesthesia) on Monday morning, it was one of those days where everything seemed against me. We couldn't, get a taxi at first and then managed to call one and waited for it in the rain for AGES! We hit several traffic jams, was stuck behind the bin men and had a taxi driver who didn't seem to know where to go even though he had a SatNav! We finally arrived really late, I had phoned them on the way to say sorry and I was coming..honest! Once in hospital feeling fraught, sick and dehydrated, we stood waiting for the lift. Which turned out to be broken! Argh...So we climbed up to the fourth floor which was a complete mission and made me realise how ill and unfit I really am. Once we were at the Surgical Admissions Lounge we sat down and got our breaths back, I wasn't on the list but I knew to sit and wait for my surgeons. I got my crochet out to take my mind off things and then saw various different nurses and my surgeon. I didn't have to wait long and was soon in my gown and slippers and being escorted to theatres. Richard held my hand and we gave each other a huge hug and kiss and said goodbye. Once in the anaesthetic room, my nerves calmed as the Anaesthetist and assistant distracted me. I was soon feeling very sleepy and then the next thing I'm feeling pain and realise I'm in the recovery room. The nurses got on top of my pain relief and I was soon taken up to the ward where I dozed until Richard came.
I had a horrible afternoon, I was uncomfortable and really didn't want to go to the loo. I was petrified it would be excruciating. A few hours later the surgeon came to see me. He looked sad and I knew it wasn't going to be good news. He was really sorry this was happening to me, and according to the Prof " I have a very crohns looking bottom", I burst into tears! How can this be happening to me. He said that I was right, I had lots of very deep fissures and also ulcerations. I got the impression it was pretty awful in there!! I said that now he can appreciate how much PAIN I'm in, and he upped my pain meds. I also started two different types of antibiotics. I was told the J-pouch is not an option with crohns, if that is what I have. I told him I wanted an End Ileo (stoma) and it all removed. He said that they would not be able to remove the troublesome J-pouch and anus if I had crohns as this may cause further problems.
So we wait for the biopsy results!!! And go from there. I cried uncontrollably when he left and Richard did his best to comfort me. At that point I just wanted to die! Sounds traumatic but that's what I felt. We waited a further six hours for all my medications and finally arrived home and got straight into bed.
I'm devastated and I just want to get my results and put a plan in place so I can not be in pain and be healthy again. I want my life back.
Please pray that God gives me the strength and courage to get through this.
X
I've been avoiding writing for a while as I've needed peace and quiet and have not felt up to it. I don't know where to start! (sigh)
I had my EUA (Examination Under Anaesthesia) on Monday morning, it was one of those days where everything seemed against me. We couldn't, get a taxi at first and then managed to call one and waited for it in the rain for AGES! We hit several traffic jams, was stuck behind the bin men and had a taxi driver who didn't seem to know where to go even though he had a SatNav! We finally arrived really late, I had phoned them on the way to say sorry and I was coming..honest! Once in hospital feeling fraught, sick and dehydrated, we stood waiting for the lift. Which turned out to be broken! Argh...So we climbed up to the fourth floor which was a complete mission and made me realise how ill and unfit I really am. Once we were at the Surgical Admissions Lounge we sat down and got our breaths back, I wasn't on the list but I knew to sit and wait for my surgeons. I got my crochet out to take my mind off things and then saw various different nurses and my surgeon. I didn't have to wait long and was soon in my gown and slippers and being escorted to theatres. Richard held my hand and we gave each other a huge hug and kiss and said goodbye. Once in the anaesthetic room, my nerves calmed as the Anaesthetist and assistant distracted me. I was soon feeling very sleepy and then the next thing I'm feeling pain and realise I'm in the recovery room. The nurses got on top of my pain relief and I was soon taken up to the ward where I dozed until Richard came.
I had a horrible afternoon, I was uncomfortable and really didn't want to go to the loo. I was petrified it would be excruciating. A few hours later the surgeon came to see me. He looked sad and I knew it wasn't going to be good news. He was really sorry this was happening to me, and according to the Prof " I have a very crohns looking bottom", I burst into tears! How can this be happening to me. He said that I was right, I had lots of very deep fissures and also ulcerations. I got the impression it was pretty awful in there!! I said that now he can appreciate how much PAIN I'm in, and he upped my pain meds. I also started two different types of antibiotics. I was told the J-pouch is not an option with crohns, if that is what I have. I told him I wanted an End Ileo (stoma) and it all removed. He said that they would not be able to remove the troublesome J-pouch and anus if I had crohns as this may cause further problems.
So we wait for the biopsy results!!! And go from there. I cried uncontrollably when he left and Richard did his best to comfort me. At that point I just wanted to die! Sounds traumatic but that's what I felt. We waited a further six hours for all my medications and finally arrived home and got straight into bed.
I'm devastated and I just want to get my results and put a plan in place so I can not be in pain and be healthy again. I want my life back.
Please pray that God gives me the strength and courage to get through this.
X
Thursday 7 June 2012
Hard Times
The last three months have been a complete nightmare and I really hope to be pain free and feeling better soon. I phoned the nurse on Wednesday to ask her if my consultant or his Spr could see me that morning in clinic. Or I said I will see them in A+E later on. She is such a lovely lady and I thanked her again for helping me, I think she feels just as frustrated that this is still going on. My boyfriend took the day of work and we made our way to the hospital, I sat uncomfortably in clinic until the last person had been seen. I am lucky that the Spr is exceptional and is I think a good man, I know he wants the best for me. You can tell with doctors, some don't give a damn and some genuinely want the best for there patients. I told him everything, that I'm losing weight, I can't eat because of pains and also great difficulty of emptying. How I'm in pain all the time but the worst is when I go to the toilet. Which happens about every three hours day and night, leading me to be completely exhausted. How I feel sick and have vomited. All these things have led me to be overwhelmed and desperate for help, I am extremely depressed and often feel I may have to take drastic actions to make it all stop. This is not easy to admit, but there it is.
He listens, looks concerned and saddened, my boyfriend is holding my hand, whilst I am in floods of tears. I ask him, how he would resolve all my problems which he doesn't know until he has a look at the pouch. He offers to look at the pouch in about 10 days time, which makes me cry even more. "No, I cant cope with this for that long. I just want you to give me a permanent stoma and take everything away." He realises the situation has reached the next level, so he calls the Prof. Who is then in the room in less than a minute. So I tell everything to Prof, who is also very disappointed and sad this is happening. He offers to perform a EUA (Examination Under Anaesthesia) on Monday which is only four days away. He explains that he will give me a permanent stoma and take the pouch out but, his list on Monday is full, but he has time to do a EUA. I agree to this, but make him promise that he will respect my decision and will promise to help me.
It's obvious that the pouch does not function well and they have said what might be an option is to redo or defunction the pouch giving me a temporary stoma and then trying again. Well, that sounds as appealing as a slap in the face with a wet fish!! No thanks.
So I'm doing a lot of soul searching, praying that God gives me the strength and courage to get through each day. But I think at this moment in time the best thing for me would be having a permanent stoma. If they had an empty slot on the theatre list tomorrow I would run in to that theatre with my butt hanging out of the hospital gown.
Oh and another thing..............its a biggie!!!!
I don't have a J- Pouch!!!! Yep that's right!! I have an S-Pouch!!!! When this was said I could not believe my ears, had I heard that right!!!! Well, I think my S-Pouch....sucks!
Well, I won't be getting any literary awards for this drivel, but there we go. This is my life! I'm off to fight with the tv and remote control, why do things not work when my boyfriend is not here to fix it!! ha
Keep Strong x
He listens, looks concerned and saddened, my boyfriend is holding my hand, whilst I am in floods of tears. I ask him, how he would resolve all my problems which he doesn't know until he has a look at the pouch. He offers to look at the pouch in about 10 days time, which makes me cry even more. "No, I cant cope with this for that long. I just want you to give me a permanent stoma and take everything away." He realises the situation has reached the next level, so he calls the Prof. Who is then in the room in less than a minute. So I tell everything to Prof, who is also very disappointed and sad this is happening. He offers to perform a EUA (Examination Under Anaesthesia) on Monday which is only four days away. He explains that he will give me a permanent stoma and take the pouch out but, his list on Monday is full, but he has time to do a EUA. I agree to this, but make him promise that he will respect my decision and will promise to help me.
It's obvious that the pouch does not function well and they have said what might be an option is to redo or defunction the pouch giving me a temporary stoma and then trying again. Well, that sounds as appealing as a slap in the face with a wet fish!! No thanks.
So I'm doing a lot of soul searching, praying that God gives me the strength and courage to get through each day. But I think at this moment in time the best thing for me would be having a permanent stoma. If they had an empty slot on the theatre list tomorrow I would run in to that theatre with my butt hanging out of the hospital gown.
Oh and another thing..............its a biggie!!!!
I don't have a J- Pouch!!!! Yep that's right!! I have an S-Pouch!!!! When this was said I could not believe my ears, had I heard that right!!!! Well, I think my S-Pouch....sucks!
Well, I won't be getting any literary awards for this drivel, but there we go. This is my life! I'm off to fight with the tv and remote control, why do things not work when my boyfriend is not here to fix it!! ha
Keep Strong x
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