This is the story of Claire through Ian's eyes and thoughts as she was going through so much. Many people think about the person who is ill but at times forget that the other person is also hurting inside, trying to be strong and put on a happy appearance. Please read it all and you will understand it is normal to feel the emotions you do and you are not alone as a partner living and understanding the illness and what could happen. But for me I had a happy outcome which can come out of something so scary!
The 2 years prior to February 2012 had seemed to us a normal life. Such as being woken up during the night with Claire going to the loo up to 5 times, then breakfast with Fiona and I on our own because Claire was again on the loo several times, then evening meals as a family was spent Claire running off again to the loo. As time went on it got worse and worse and we were unable to do simple things like meals out, theatre, and things that we all take for granted as a family.
We were being told it was IBS and Claire was given Fybogel sachets to take every day and they seemed to work. Now and then Claire would get flare ups which would mean the run to the loo once more. We had started camping at the start of summer 2011, but once again Claire had a flare up which meant runs to the loo and in the middle of a field in a tent this was not easy. Then getting Fiona keep asking “where mummy gone” was hard to keep saying why and where mummy had gone without letting Fiona worry about mummy. This went on and off having flare ups during rest of 2011. Christmas holiday came and we were due to go out to Spain flying on Boxing Day. We both were nervous about this as the flight was early in the morning and we knew what this would mean for Claire. And yes it did from leaving the hotel room at Gatwick to walking to passport control Claire had to do the rush to the loo several times. Once again Fiona was asking where mummy had gone but by now she was used to it and took it as the norm. The flight was also nervous as being strapped in was worrying for Claire if she got a flare up, but thankfully she didn’t.
We had a lovely holiday but still had major flare ups but this we put down to the food being creamy and this appeared to be a problem food if you had IBS. Now into 2012 and very much looking forward to this year as it was the Paralympics and Claire and I wanted to try for another child.
Into February 2012 Claire had a few flare ups but not too bad until mid-February and half term came. Claire had come to my work with Fiona during half term (I work as a site manager in Suffolk on a construction site) and Claire spent the whole time on the toilet and my forklift driver and I kept Fiona entertained as mummy was not around. Once again we could not do what we had planned and Claire and Fiona went early back home. I was now starting to get really worried about Claire and had massive support from a colleague at my work place being able to talk to her and ask her advice. I had also spoken to my boss aware of there was a problem. Half term was hell with most of it spent talking to doctors to try different medicines to try to settle Claire’s tummy and bowel movements. The end of the half term came and we thought Claire might be pregnant, we were to find out this was so far from the truth!
Monday came and half term was over but Claire was too ill to go to work so I spoke to my boss and said I would be late in as had to take Fiona to nursery, little did I realise this was going to become the norm for the next few months. During the Monday I spoke to Claire loads on the phone and we were getting really worried now as something was not right but put it down to Claire possible being pregnant! Claire also had not been eating much over the last few days which was making Claire very weak now and looking very ill in her face. But still she was having to rush to the loo more than normal. Monday night was hell and Claire really spent all night on the loo which was now giving her a lot of pain all over and I was getting very scared and worried and didn’t know what to do.
Tuesday came and Claire just had enough strength to sit on the bottom of the stairs to say bye to Fiona as I took her to nursery once more. What we didn’t realise was that this would be the last time mummy and Fiona would do this in person for a long while.
Fiona was now asking me what was wrong and acting strange herself which upset me even more, but I could not show Claire what I was thinking or worrying about. During the morning I tried to work and around dinnertime gave Claire a ring. So glad I did as Claire told me she was going downhill quickly.
I just said to her then “do you want me to come take you to where I want to take you” to which she said “yes now please”. I was pleased by this but really worried and scared now. I phoned my boss who was very good and said just go.
I am so glad I saw no police as I broke every speed limit around. I spoke to my folks who were going to pick Fiona up and look after her after nursery as we thought we would be back later on that eve, how wrong we were!
I got to Claire and was shocked how pale she looked but she near enough jumped out of the house I think she was glad to be going! I had on the way home spoken to dad (on hands free) sorted out to meet Dad out ours to swap over car seat and borrow some money of him to get some food at Hospital as we had no cash. On the way up Claire was now in a lot of pain and I was panicking inside. Again I broke a lot of speed limits and was glad of no police about. Luckily with the money from dad we could park at the hospital and we all know how expensive the car parks can be. The hospital was expecting us as we got our doctor to call through. But still we had to wait a while and in this time Claire had to rush off to the loo. All I could do was sit in A&E waiting and ate my pack lunch well away from Claire as this made her feel sick. Finally we went into a consulting room little did we know what was about to happen. I passed over a bag of medicines and tablets that Claire had been taking over the last 2 years and over the last 2 weeks to the doctor’s amazement. We also said we think Claire was pregnant. This raised concern also. The doctor left to get some needles and other stuff to test Claire. Then suddenly Claire had to go again and rushed off. By now all I wanted was answers and Claire to be well. After more talking and testing I realised how ill Claire had been and found out how much worse it had been over the last week. I realised Claire was not coming home tonight to Fiona and I. After some time in the room the doctor came back and told us Claire was not pregnant and never had been (I felt very upset inside but could not Claire know this) we guessed Claire’s body had shut down. She was stuck on fluids and had a commode which was going to be her close companion for several more days we were about to discover.
After an hour or so still in the consultation room we were told that they didn’t fully know what was wrong and that they were waiting for a bed for her to take her in. by now it was getting late and I had told my folks I would be home sooner than it was. I had to get home to let my folks go and see Fiona. Leaving Claire that evening was horrible in the state she and not knowing what happens next.
I was glad to see my folks and get Fiona up from sleep to give her a big hug and kiss, she thought mummy was staying out at a party and would be home next day, how wrong were we.
Wednesday to Friday was hell at home as Fiona now wanted to know were mummy was and that she wanted mummy home which just made me cry which made her cry. Every morning I would take her to nursery and try to get her to talk to mummy on blutooth in my car but watching your child shake her head cover her ears and say no really hurt me inside. I tried to go to work for a few hours a day to keep sane and was thankful to people being kind and leaving me alone. During the end of the first week an outbreak of noro virus was going through the hospital which was stopping us being able to get Fiona to see mummy which hurt me and Fiona even more. Thank god for photo messages to show Fiona mummy was waving to her but it used to make me cry even more. During the night Fiona would cry out for mummy to which all I could do was hug her and say I want her back too but she will be ok? I didn’t know now if she was going to be ok or even wonder what was going to happen!
Friday came and full lock down of the hospital came. So I went to work for the whole day. I have been so thankful to friends who had helped look after Fiona and pick her from nursery so I could visit Claire in the afternoons. That evening I was going to pick Fiona up from nursery as I hadn’t done all week and nursery was saying that Fiona was not herself no more. But I got a call from Claire crying her eyes out saying get to her now something has happened. I just froze but then just drove and asked a neighbour if she could look after Fiona. I was feeling so bad as Fiona had not only lost mummy during this week but not seen much of daddy either.
This was when I was introduced to a stoma and ulcerative colitis on the phone from a stoma nurse whilst driving again like a mad person to the hospital. They had given me special permission to enter the hospital as they said I needed to be with Claire as she had been told some scary news. My god she didn’t have IBS but an IBD that being ulcerative colitis. What the hell was this I was thinking; will she get better, what now? By now I was so tired, drained, losing weight as not eating well, and had never cried so much in one week. I was shown some info about stomas and wished there was more clearer information to understand all the medical stuff being thrown at me and Claire. Hence wanting to do this website.
Being told they were going to try strong drugs on Claire to try to calm her bowel down which could affect other parts of her body. I felt really scared now and just wanted my family at home now!
That weekend was hard wondering what was going to happen, would Claire need the operation, would the drugs work, so much was going through my head. Saturday came and the hospital said we could come up with Fiona. We set off all very excited we would pop into Fiona’s aunt then take Fiona to see mummy, but the call came from Claire and said “no one can come in” That was it both Fiona and I just broke down in tears I hated that moment watching your daughter break down wanting mummy so much! I drove on to Fiona’s aunt and she suggested I needed time out so I left her and had a few hours to myself. I went to the gym and those poor weights were given a lot of my anger now, because I was so angry with so much stuff in my head saying what, why, how. I just wanted to go home and it all be over. Fiona came home and I promised Fiona a daddy day on the Sunday. Still during the night Fiona and I had many tears together wanting mummy home.
We had a lovely day on the Sunday swimming, playing and having fun and I got Fiona to eat some food now as well. By now I had lost half a stone in weight due to not really eating. In the back of mind I also knew Claire could have needed the op.
Monday came, I was taking Fiona to nursery and she was not even wanting to talk to mum on the phone. I drove up to the hospital because I had been given permision to enter as I had to meet the Stoma nurse? A stoma nurse what is that all about? It was amazing to see Claire, I was so shocked inside to see how thin she was now and looking frail, this was not my Claire no more. I showed her pics of what Fiona and I had done on the Sunday which lifted our spirits. Then Sharon came in the Stoma nurse, she was so lovely and explained everything to us. Claire might have to have an operation which could change her appearance so much but I didn’t care I just wanted it sorted. But being shown these bags that would go on her tummy freaked me out to be fair! Then more people came into the room to take for Claire for an x-ray. An hour later she didn’t come back and I was getting scared now! But thank god she did, there was just a long wait at the x-ray department. Then at 11am this doctor walked in, said “good morning can I look and and feel your tummy Claire” Next words were “right I think it needs to come out and now”.
I was really scared now and realised Claire was about to have a bowel removed and have a stoma with a bag hanging from her tummy (that’s what I had pictured in my head).
I arranged for Fiona to have a sleep over with her best friend for the first time and spoke to Fiona on the phone and said whilst crying “would you like a sleep over with Pippa” Thank god for great friends!
Fiona now sorted it was time for Claire to move wards and get ready.
The time had come for Claire to go. As she lay in her bed being pushed off I just cried and said I was crying with happiness to her so not to worry her but inside I was sacred, was I saying good bye to her? Sitting in that room all alone I just let my emotions of the last week just come out. 2 hours gone, no sign, 3 hours gone, no sign, 4 hours passed and getting really tired now and still no sign. I had to go home and get a shower now whilst I had some life just in me.
I left the hospital feeling bad that I had left Claire there all alone whilst not knowing when or even if she would be coming back. I am not a religious person but even I looked up and said a little word for help!
At about 11pm I got a call saying “Mr Jones Claire is now in the recovery room, it went a bit longer than first thought because of the state Claire was in, we are very lucky to have her alive this eve!” all I done was say thank god and thank you. Next all I done was laugh out aloud and say good girl.
The following afternoon I couldn’t wait to see Claire but when I saw her in this big bed with tubes and machines all around her I didn’t know what to do or say but just cry. But least I still had her.
The next few days I was now able to give Fiona a count down when mummy was coming home and got excited to get my family home!
Friday came and I got a call “get me out of here I want to come home”, I rushed once again from work to her and with bags of stuff and a very fragile Claire I got her home. The nursery was brilliant and had prepared Fiona for mummy to be home. But when Fiona came home at first she was unsure but to see Fiona and Claire on the same bed together was an amazing sight that didn’t think I was going to see again.
Several weeks of helping and slowly getting Claire better meant we started getting our family life back, we could go out, go camping, theatre and do all the family things we had not done for years.
I will say it did take me a long while to fully look at Claire now with these bags hanging from her tummy, which I know will be upsetting for her to read this but time being a healer means I have no worries at all looking at her and am thankful to those bags being there and feel Claire looks the best she has looked for so many years.
The Paralympics was amazing but I did think it was going to be just Fiona and I there and not all 3 of us. Also during that summer a big decision was made not to try for any more kids and not to have the reversal. To me I didn’t care about anything all I had was my family and thanks to all the nurses and medical professionals, friends and family they made it all happen!
Ian Jones , Claire's husband
Please note this is what happened to us and each case will be different and can have different outcomes. Please always consult and see medical professional at all times!