My journey from UC to J-pouch

A picture of a Total Colectomy operation

Day before surgery Eeeeekkk

Had my usual four/five hour sleep then I wake and can’t go back to sleep. I normally read my book as that sometimes allows me to drift off a bit.

My Surgeon came to see me this morning. Went through precedure with him. I’m booked for tomorrow afternoon, I hope the morning doesn’t drag too much.

I also chatted with the nurse last night and asked recovery time after. She said at first I will have drains coming out of my tummy, a gastric tube for a day etc. pain relieve will go through an epidural that is put in immediately before op and would be in use for 5 days. They estimate I will  further 7-10 days in hospital.

Once out, I will not beable to drive for at least 6 weeks, I should beable to resume normal day to day tasks/work in 8 weeks.

They have now gone through the surgery risks. They made it very clear that it is high risk surgery, went through what those are. I’ve now signed and ready!!

So, I think I will end my pre op. journal now.

How do I feel? 

I’m scared………..yes I want to run away…………….yes I’m worried how emotionally I will or not  cope……..

BUT I DO KNOW I WILL COME OUT THE OTHER SIDE OF THIS A HAPPIER AND HEALTHIER PERSON THAT WILL GET A LIFE THAT DOESN’T RULE ME AND BE I HOPE BE WELL……….

The process between the two will have to be a big task to face. There are always positives that come out of a negative. This is no exception……

It is not just a big op. then I get better.

There are big emotional attachments to the surgery such as having to wear a bag.

Also, it could be a long road to travel such as future reconstruction surgeries.

HUGE swing of emotions, things hitting home

I have awake since the early hours, feeling in a better state of health seems to have a downside………you can think too much. I do think that medically the operation will go very well and even if I do encounter difficulties post surgery such as infections etc. There is little thought that I would not get through it. Yes it is major surgery but it is not a high risk procedure. Hadn't been thinking what ifs as it will be fine.

But thoughts this morning I was wondering if I was being responsible thinking this way as if say, death did happen (it is not of course ;o) I would have no special letters for Tony or the kids to keep. That would be horrible, yet, I KNOW I will be fine so I should worry…heeheehee!!!

Going to hospital church again this morning, found it very peaceful last week, the lady opposite me is going too. We only have three of us on this ward now, which is really nice.

Dad is coming to visit today. Which reminds me, I had a lovely phone call on my mobile from Jason (brother from Australia) It felt he was next to me, it was so nice to talk to him.

Oh dear, going to the church today wasn’t a good idea!!! My opposite neighbour came too. We were both looking forward to it. It was done this week through the Salvation Army, was suppose to be an half hour service, but she just went on and on and on. It didn’t help that that contents wasn’t great either!!!

What topped it was the pain in my lower back and stomach was made worse from sitting in an uncomfortable chair so long. We tried to make humour of it!!!

Still, I was looking forward to my visits today as my Dad and Chris came up from Essex, as was my Mum.

Timing wasn’t that great though. As after a slow nursing care morning that some of us got, getting routine care on time etc. Suddenly at 2pm – 3pm, the visiting slot time, I was been given drugs (late) doctor swoping my I.V. canulla which I asked to have changed the night before, turns out they should of listened as it is now infected !!!!

They start polishing the floors and cleaning the toilet and topped it all with announcing that the lovely only three lady bay ward we were on, they were going to be split up as they needed to turn it into a male bay straight away.

We were devastated. The three of us had really bonded, we all were quiet and all wanted the window open for fresh air 24hours a day. Also, I think it was only now that we realised how much we had needed and support and gave strength to each.

So, 3pm, as my Dad, Chris, my brother and Louise was at the end of the disturbed visit, they piled my bed of my things and wheeled me to another bay.

Then it got worse!! A very confused lady on my new bay continued minute after minute, hour after hour she would shout and swear and cry and shake her bed!!!

Arrggggghhhhhhh!!!!!! Get me out of here!!

Thought I’d disappear of the noisy bay and go and have a long shower before my Mum visits tonight.

Oh dear, did not help, used a different bathroom, this one had a full length mirror, obviously not properly seen my naked body fully in a long while!! Oh my does you body change from your twenties pre kids to your thirties after three children.

Then it really hit home emotionally for me and how I feel about my body, how Tony will see my body after surgery when I have to wear a bag………I just poured my heart out sitting naked on a cold hospital bathroom floor!!! Feeling so alone.  Just over a year ago I pictured and dreamed how I wanted to celebrate mine and Tony’s 10^th wedding anniversary (this 14^th June). Those dreams have been shattered. Still.........I MUST stay determined for it to be remembered to be very special. Just a change of perspective.

3rd Friday in hospital now

I can’t believe I have completed two weeks here in hospital, doesn’t feel that long, I suppose it doesn’t when you are busy being ill!!!

Generally I am feeling on the mend, bad lower back and belly today, some morphine finally shifted it in the end. Slept okay. I’m on a nice small ward here with three very nice ladies.

Tony brought in some nice new hair and shower stuff, as I could stand much steadier tonight, I managed a lovely hot shower. Really needed a good hair wash and nice smelly stuff.

Thursday 6th April - update since Monday

Since Monday I have been moved onto the surgical ward, this is where I should be staying until the time comes to go home.

Been very behind on this journal as I really haven’t been that well, Along with the strange symptoms, I was having a really dizzy and spinning head, even with my head on the pillow and my eyes shut. I couldn’t really hold conversations that well and was really weak. On the Monday my legs were so weak that when I would go to the bathroom they would just buckle under me. I couldn’t focus to read.

It did also make blood pressure changes they were not happy with so they gave me some gelefusion through my drip. That helped bring levels normal.

I also got increased skin burning sensation, especially in my face during each ‘funny turn’ they think it is all a mixture of some type of viral thing and that my body is really run down and nutritionally lacking.

I also saw my surgeon. With all the x-rays, past and present coloscopy results etc. etc. he has decided (spoke Tuesday) that I am not fit for surgery until next Tuesday and that he really didn’t think the reconstruction of turning my small bowels into an internal pouch etc. can be done during this first operation for the same reasons. This would be done on the second operation. He saying he should get me nutritionally fit first. This will now mean that instead on a major operation first time then a smaller one the second. It would mean two major operations, and a possible third smaller one.

The distance between one and two will be a minimum of 3 months, but can be delayed or not even happen, there doesn’t seem to be a time limit.

I feel all this doesn’t really need to be thought out too much at the moment as it doesn’t affect me for months ahead. I need to take a stage at a time. This stage is life changing enough!!!!! Both positive and negative.

Caught more than I bargained for during stay!!

It is now Sunday night, (2^st) missed writing yesterday, head a little too ‘cloudy’. In an unwell sense. I had a nice visit from Tony and kids again. After I watched another DVD; ‘Green Mile’ .

Well, was good until half way through I had the symptoms of palpitations, whizzing head, it just wouldn’t go away, I could breath just fine which stopped me feeling panicky but it was just horrible.

As they took the obs though, it got worse. My hands cramped up pulling my fingers bend back up to my wrists, they just felt like stone and as if the blood was cut off, this travelled right up both arms and it was like my arms were paralysed, I couldn’t move them at all!!! This was scary!!

They called the Dr and did an ECG although by the time they did that, the palpitations were calming down some.

My skin felt clammy and my face burnt as if on the beach. It took an hour before I could start to move my fingers again.

They don’t know what really happened, it wasn’t a set of symptoms that made full sense.

Been marked up on tummy

Knowing that things will not happen for a few days, it has made me feel relaxed, probably the calm before the storm feeling!!!!

Still having short of breath episodes along with a spinning head, heavy, banging in the chest, not a nice feeling, very strange!!! They think it may be a virus or reaction to drugs.

Stoma nurse came again, she has now put pen mark to where the stoma will hopefully be positioned. It is done beforehand as it needs to be on your flattest part of the belly but keeping it as low as possible.

Dr. Dixon saw me today too. Feel good continual care, knows me pretty well, well…. my condition at least!!!!

Watched a DVD for the first time since being in hospital, they isn’t any television but I have my lap top with me, using it for DVD’s, this journal and playing card games.

I watched ‘Inside Man’ starring Jody Foster. Enjoyed watching it, even if it was tiring.

unwell unrelated to UC and stoma nurse chat

This morning has not been as good, been suffering from short of breath, dizziness and deep, hard beating of my heart, erratic.

They have put on surgery/flight stocking…..how attractive ;o)

Saw Tony, Grace, Oscar and Tom today, I really enjoyed them coming. They behaved really well and they seem quite happy and unaffected by everything.

Chest feeling better tonight, I hope it stays that way. Evening on the ward is quiet; let’s hope it stays that way.

Tony continues to text me about day to day stuff such us what our little monkeys are up too!!!  Some messages have made me very much grin.

Saw the stoma nurse today. She is very nice and easy to talk to and has all the information I need, she we now be part of my care before, during and after the Op.

She left me some leaflets on ‘Living with an Ileostomy’ and information if I have the Ileo Anal pouch (the reversal).

She also gave me a useful but graphic pamphlet on a lady with an Ileostomy, practical care that shows you your stoma cleaning etc. She had a tattoo next to it which really got me thinking. I am certainly considering having a tattoo of a phoenix done. She also gave me two sized bags. That seemed a little shocking too but of course very useful to touch, feel and good to visualise, it will help while I am waiting. All a bit surreal, brought home the reality of it.

I am also thinking I should have the reconstruction set up ready during the first Op. but I suppose I need to talk with the surgeon what the options are and how they work. It is pretty specialised, and each surgeon will work differently.

Wednesday, Noisy wards!!!!

Surgeon chat

Couldn’t sleep last night, I really needed to switch off to my emotions, I kept tossing and turning with unanswered questions buzzing around in my head.  Would wake up in a panic and upset.

A surgeon spoke to see me today to go through the procedure through discussion and I got him to draw a couple of diagrams. Visualising was a good idea.

Problem is, there are only two surgeons that can do it, one is away all month and the other is away for the next of the week!!

Anxiety has subsided………..for now!!!!

Had my camera and biopsy done, with the sedation and a very good pain relieve intravenously! Instantly worked. Sods law they did in during a visiting slot with Tony!! Never mind.

Rachel  (old friend that coincidently had same condition and op.) also reminded me of a website for swimming costumes and underwear etc. called whiterose.com, I’ll be on that internet searching as soon as I can……..hmmm, who will win first, goddess forum or the new style sexy underwear search!! LOL

See consultant

Had a visit from my consultant Dr. Dixon. I have been lucky with the consultants and their team. Have always phone contact directly whenever I have needed them and they have been quick to try and fix each problem. I have no faults with the care!

He is still letting me feel that there are some other alternatives to surgery but clear that it would almost 100% be a temporally fix, still, major surgery is a hard thing to face, we all are different. The way I see it, I either come in by foot and clearer in the head or it would be emergency dire straits situation. I prefer at least some control!

He is going to send a surgeon down for a chat later today. Also a stoma nurse has been informed to go through aftercare and living with an ileostomy bag.  Mean while I have been given permission to get a lift home to get a few more clothes together. Tony should be coming soon.

Made a list of questions for stoma nurse and surgeon.

Sunday

Been here at the hospital since Friday but now, at 12 midnight I have been moved onto Twywell Ward (have been on a temporally ward) been for the usual tests, x-rays. obs. and intravenous drugs. On going stuff, the usual.

Here it is quieter but full of white head old ladies, what a young lass I must be seen as!

After falling asleep with exhaustion, I woke suddenly in the early hours in a mess, a crying panic, I tried to hide my anxiety and fears, I hate to be seen like that. Was caught out and given a cuppa of tea (what is it about sugary tea that helps!)

Thinking about a lady I met on the first ward, was diagnosed with a lung cancer, they told her on her own at the weekend, how hard must have that have been!!!! Was unexpected as it was a result for a scan that showed a blood clot.

Tuesday camera (coloscopy) and biopsy

Couldn’t sleep last night, I really needed to switch off to my emotions, I kept tossing and turning with unanswered questions buzzing around in my head.  Would wake up in a panic and upset.

A surgeon spoke to see me today to go through the procedure through discussion and I got him to draw a couple of diagrams. Visualising was a good idea.

Problem is, there are only two surgeons that can do it, one is away all month and the other is away for the next of the week!!

Anxiety has subsided………..for now!!!!

Had my camera and biopsy done, with the sedation and a very good pain relieve intravenously! Instantly worked. Sods law they did in during a visiting slot with Tony!! Never mind.

Rachel (an old friend that has been through same op.) also reminded me of a website for swimming costumes and underwear etc. called whiterose.com, I’ll be on that internet searching as soon as I can……..hmmm, who will win first, my goddessmums forum or the new style sexy underwear search!! LOL

Admitted to hospital

Well it seems that my 'Hoardcore wonder drugs' that has been helping my control my bowel disease - Ulcerative Colitis has got to the stage that they are failing...well failed!!!!!!!

There are now little avenues left to travel.

For a bit of background. I was diagnosed with UC in November 2004 after mild symptoms have developed into one bad bout that at the time I thought was a bad stomach bug.

Soon after this, I became pregnant with my 3rd child, during the pregnancy my UC went into remission. They started to return within hours of my waters breaking!!!!

Sadly, from Spring 2007 my condition began to deteriorate more and more and drugs list became more and more throughout the year. For those reading this that would like to know which drugs, by the end I was having;                                                                                                                                                         Pentasa 4000mg (Mesalazine), mebeverine, 30-40mg prednisolone (steriods), Azathioprine 75mg (immunosuppressants) and 8 weekly infusions of infliximab (Remicade)

I became drug resistant. So, here's my journey as from today!

Normally, within a few days of an infusion, my UC would get under some control. This time is different. It has been a week since and I'm going down hill fast!

Todays a bad day, Trying to get to the supermarket for food shopping. Has taken 5 bad urgency and very bloody trips to the rest room beofre getting out the door. Then when I get there, after another 5 trips of much the same I only manage putting 3 items in the trolley!!  I stuck it out to the end as I was determined to get what i needed., I was exhausted by the end.

Went I got home, I rang my consultant for advice. He said to come in and be admitted. We would start off by spending the next few days having intravenous steriods and then he would come to see me and review the situation from there.

So, that is what I did. Packed my bags and my husband Tony and my 3 children; Grace aged 7, Oscar aged 5 and Tom aged 2 dropped me off straight after dinner.

I know that the most probable solution will be to comletely remove my bowels before they disintegrate! So I may not leave the hospital until I'm gutless

All I know now though, something has to change as I'm getting pretty ill, I'm ruled by my UC.

Before UC hit hard, was healthy and well