Archive for the ‘Ulcerative colitis’ Category




This last week has been one of those where perpetual motion would not be a bad description. Lots happening –

  • Work very busy, and full of poor examples of ‘team’ working. Midwives are normal human beings and, especially at times of stress, will behave like school kids. All it takes is for 2 people to have a minor misunderstanding, not solve it by talking, and soon others are dragged in, as they are affected by others actions. Presently I have managed to remain on the periphery, a midwife from another team asked me today if I was wearing body armour! Just about sums up the working environment at the moment.
  • Jack and Izzy’s Mummy has been under the weather recently so I took them off her hands on Sunday so she could sleep. I was a very, very naughty Nanny and took them out for the most unhealthy meal……..ever. Hamburgers and chips, chocolate milkshake, pancakes, ice-cream, chocolate sauce, sprinkles and flakes and, just for good measure, the waitress gave them each a lolly for eating all their lunch. We then went to the park and ran off as much of the excess sugar we could. On our return their Mummy felt a little better but then that night her head ‘exploded’. She phoned NHS direct, her partner had to take the phone from her as she couldn’t speak properly. They told him to contact the on-call docs, who just told him to take her to A&E if her breathing was affected. I can only think they were anticipating an embolism of some description. By the morning her face was numb, she was still unable to form words and sitting up caused an escalation of her headache. She visited her G.P who took her blood pressure and pulse, tried to The G.P put the headache down to a continued problem from the whiplash sustained back in September.
  • Hubby went off for a golfing weekend, I pottered. Sorted out earrings, cleaned jewellery, moved my leaf-store, reduced my wardrobe, and recycled it via the local charity shops. Caught up, again, with all my stats, tidied out my car and checked my on-call bag, then went out for a meal with all the other golf-widows.
  • Set up my new printer/scanner/copier.
  • Son’s ileostomy blocked on Sunday night so he, DIL and Evie all came to us on Monday. He went to bed, we went out for a walk and on the way bought a carpet washer! Then Amy came around, her Mummy had offered her a visit to the local, open farm but Amy declined ‘ I don’t want to go to the farm, or the zoo, I’m going to my Nanny’s’, so she did. We painted the ornamental cat as he was showing signs of weather damage, rather than black he was grey and green. He has been reclining by the pond for several years now, I like to think he was a deterrent to the heron but since said heron took all my fish last week his scare abilities were obviously failing, or the heron has become wise to his immobility.

Gosh, now I’ve written it down it really doesn’t seem that busy, but it seemed it at the time then, just to make my day my elderly washing machine declined to rotate this evening. Hubby, who is not an engineer, and definitely NOT a washing machine engineer decided that he could fix it, wrong, so, so wrong. It may have helped if he even knew how to switch it on, let alone know where in different programmes the machine should agitate. Via the grapevine my ex-BIL heard of the demise of my washing-machine and he e-mailed me with an offer too good to gracefully decline. If I wasn’t married, and he wasn’t about to tie the knot I would propose, he has rescued me and my computer on numerous occasions and now he has solved my laundry issue. God bless the man.

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Work is manic at the moment. One of our team is off sick with………..chicken pox and another 2 are on annual leave. I have been finishing over an hour late everyday, getting home and then spending another hour making phonecalls and doing all my paperwork.

The couple whose little girl was stillborn were having an especially sad day today as it was today that their baby was ‘due’. The results of the postmortem are expected on Monday, I’m visiting them on Sunday but then I’m off until Friday so I’ve given them my mobile number, just in case they need a chat when they have received the results, if there are any. I know that sounds strange but that’s how it is sometimes, there is no reason found as to why baby did. I suppose that there are different ways to look at a ‘non’ result like that. It could. perhaps should be seen as positive as there was no abnormality found with the placenta or any problem with baby so it would not indicate any reason as to why the next pregnancy should not result in positive outcome. However, a different perspective from the parents point of view may be that it happened for no apparent reason before, why not in subsequent pregnancies? I do know though that, if they go on to have another baby, they will be hugely anxious as they approach and enter the weeks when their first baby stopped moving in the womb.

Last weekend Nanny and Grandad had Jack, Amy and Izzy to stay. I was anticipating bedlam, instead I had a wonderful cuddly time with 3 really angelic (most of the time) grandchildren. On Thursday I took the twins, Jamie and Louis, to a local open farm, it was a messy, glorious affair! I’ve invested in a set of twin reins, they go around my waist and then the boys are attached to me, rather like 2 huskies pulling a sledge, I think we provided an interesting side-show for the other farm visitors.

Jack has, finally, developed chicken-pox. He has taken so long about it that we thought that he may have immunity, we were wrong. His Mummy reported that he had said he was really tired this evening, and then when he had his bath 10 spots were spotted :). When they told him he had the pox he slowly took himself upstairs, got into his bed and announced that he was ‘very poorly’. What a man.


Not me, or ‘the boys’.

We had all, including son, though that his ulcerative colitis was a thing of the past following his total colectomy and ileostomy, this isn’t the case though. What none of us had appreciated was that a short length of bowel is left behind and, obviously now we know, that is still affected by UC. Son doesn’t go into great detail but from the comments he has made it was starting to cause him discomfort, so he is back on medication. Nasty, nasty disease.

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Family time

In keeping with this as an ‘on-line diary’ this is the time for some updating. Hubby and I have booked our winter holiday, we are off to Tenerife for a week. Last year we did this for the first time, and realised that one week away in the winter was more beneficial to us than two, possibly more, in the summer, plus it’s cheaper. Due to the economic constraints this year we have decided that this is our Christmas pressie to each other, makes it feel less of an extravagance.

Son is incredibly well and has returned to work 3 days a week. There was a slight hiccup last week when he developed an infection, possibly a recurrence, at his wound site but a week of antibiotics appears to have cleared it up. I am so happy, so relieved that I feel as if I beam whenever anyone asks how son is doing, I become a great big smiley face. Son is now talking about having the drop-down surgery, a J-Pouch. Basically where the surgeons pull down his small intestine, form a pouch and then re-attach it to what is left of his rectum. The desired outcome is that son then longer has his stoma and bag, the ileostomy and, other than a few scars on his abdomen appears to be back to normal functioning. Reading up on it reveals that things are no where near that simple. DIL is almost back to normal, her coccyx is not as painful as it was and she appears to be revelling in motherhood. Sitting must be quite a bit more comfortable now as we are babysitting next weekend so they can go and see the James Bond film, I just hope that her Mummy and Daddy will have persuaded her to take a bottle by then as otherwise I can see Nanny and Grandad will be out wandering the streets at night in an effort to convince Evie to sleep. Evie is a real cutie and bestows her smiles on everyone who spends time playing with her, much to the pleasure of her biggest fan, her cousin Amy. We are all still waiting to see what colour the new baby’s eyes will be as our family appears to defy all the inheritance laws as Hubby has brown eyes, I have blue. We have 2 daughters with blue eyes, a son with brown and, so far, all our grandchildren have blue eyes, I thought that brown eyes were dominant.


The boys (twins, only we don’t refer to them as that) are now both walking, Jamie took off about a month ago but Louis only mastered the skill a week ago. To celebrate their achievement I took them to have their feet measured, and they both have the same size, 4G. I don’t know why I’m surprised as they are still almost identical, we can see differences but strangers are still confused by them. Their sister is growing up so fast, she had her pre-school booster immunisations last week, I gather from daughter that havoc was caused as it was the same room and the nurse as the boys attended for their jabs, hysteria all round. Amy, having by-passed the ‘terrible twos’ has entered into the ‘tiring threes’ with gusto and is constantly trying everyone’s patience with her will and determination. It was possibly inevitable that she would have to demand attention due to having x2 siblings thrust upon her at one time, it must be very disturbing to have your one-to-one life swept aside so abruptly. Alternate Mondays I have her to myself, and she is glorious, hugely entertaining and an absolute pleasure to spend time with. Last weekend we had a family meal to celebrate Evies arrival, Son’s recovery and SIL’s birthday and Amy spent much of the time with DIL and Evie, it turns out that Amy loves babies when there is just one of them!

Jack is now a full-time school boy, and is revelling in it, so much so that he has decided that he should go to school at the weekends. I wonder how long that will last for? As it was their Daddy’s birthday last weekend Izzy and Jack stayed at our house whilst Mummy and Daddy had a party. Izzy is now in a bed so she and Jack shared a bedroom, brilliant arrangement they were absolutely no trouble as when Izzy protested about bedtime Jack just told her to be quiet as he wanted to sleep and that was it, silence until the morning.

I have been a poorly individual the last couple of days, courtesy of the latest tummy bug which is doing the rounds. Much better now though and hopeful that this will protect me through the winter from any other viral attacks.

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Day 25

The transformation is amazing. Son may not have regained any weight, despite eating mega amounts of hi-cal, low fibre junk food, but he just looks, and feels, so well. He saw his UC consultant on Tuesday who declared herself pleased with his progress and will not be seeing him for 6 months as Son is no longer her concern since his ulcerative colitis has been chopped out. He does have an appointment to see the surgical team in 2 weeks, I’m not sure if that is just to assess his recovery from the surgery or whether it will also be to discuss if/how/when with regard to the ‘take-down’ surgery. Son and stoma appear to have reached a good working relationship with few of the initial problems with blockages. He is discovering by trial and error which foods to avoid, the list is shrinking daily and which ones cause the fewer issues. His wound infection has almost cleared up entirely and he reports that it causes him virtually no discomfort at all. Certainly he is now practically fully able to do any tasks he sets himself, even mowing their (small) lawn which he did the other day. He has not yet started driving but even that should be possible in another week. We withdrew nearly all the extra running around for them in the middle of the week, I think they were desperate to start being a little family and living their own lives!

DIL is not as free of discomfort as she would like, during the birth her coccyx was displaced, and she is still extremely tender in that area, luckily I still had my wedge cushion from when I fell on my derriere during the snow, and this has been helping slightly with sitting (ouch!!!!). Evie breastfeeds wonderfully, has lost hardly any weight and has, at last, decided that it is possible to sleep in a crib.


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This was the beginning of son’s journey to life with an ileostomy. How naive was I back then? I was so sure that this was not a major problem, that it would all be sorted if he stopped drinkng alcohol.


Next week is Son’s birthday, so a(nother) family meal looms large but I shall rejoice as he has had a few worrying months recently but hopefully much of the worry is now resolved. Back in the late summer he phoned me up and said he was filling in an application for personal insurance, and needed to know if there was any family history of cancer. I didn’t really pay much attention to be honest, just replied that although my Father liked to scare us with reports that he has bowel cancer, he hasn’t really got it, and no one else has either. Over the next couple of weeks he asked other questions, one day about blood tests, a week later about endoscopy, another time about colonoscopy but it wasn’t until he asked what blood results show if someone had cancer that I realised all this was referring to him. I questioned him but he just told me there wasn’t anything serious, not to worry. Not worry, the boy (man) must be joking, I’m his Mother, it’s my job to worry. I enlisted the help of Hubby, told him to take him out and find out what was going on, absolutely useless, do men ever really talk about important stuff, can they? Eventually I sat son down, stuffed bamboo under his nails, attached electrodes where the sun doesn’t shine and found out some of what was going on. No specifics about symptoms but at least I found out he was seeing a Gastroenterologist and had undergone a colonoscopy and was waiting for the results of the biopsy. Anyway, he had the results this week, ulcerative colitis, not good news but certainly better than a malignancy. He has started on the drugs, seems very positive, but refuses to accept a link between his symptoms and drinking alcohol, there’s none so blind……….takes after his Father you know.

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My spirits lifted this evening, when son uttered a monumental statement ‘ I’m feeling loads better’. Not only does he feel better than he has for weeks but he looks better as well as the yellowish pallor has been replaced by a healthy, pink hue. He still has extremely sunken cheeks, huge eyes, a sinewy neck and a skeletal frame but he looks more alive than dead now. This morning he and DIL went to the local supermarket and bought him some clothes to tide him over until he starts putting the weight back on, he has lost 4 stone in 8 months. Today is the first day when he has not suffered any spasms from his intestine and that has just made a huge difference to his whole perspective on life now and in the future. He still worries about infection, and pays a great deal of attention to any discomfort around the wound. This extends centrally from just below the xiphisternum (the bottom of the chest bone) to about 3 inches below the umbilicus, which it does a little detour around. It is healing well but around the staples there is slight inflammation, it will be good when they are removed on Tuesday. Life around him is not a bed of roses, he is often anxious, frequently short-tempered and he hogs the remote control, but it is all worth it just to see him looking so much better.

DIL is positively blooming, she seems to be coping exceptionally well with her pregnancy going post-dates. Tonight we had a curry. While son, yes he ventured into a less bland cuisine, had an extremely mild garlic chicken, DIL had a bhuna which is more spicy than she would normally have and, I suspect, a final ditch attempt to avoid a stretch and sweep! This afternoon she asked me if it was really brutal. I went off into my explanation ‘ I would describe it as uncomfortable rather than painful. Basically, the midwife will do an internal examination and attempt to find your cervix. If the cervix is in a central position it’s not too bad, but if it’s behind the baby’s head it is more difficult’. At this point I took my sock off and, with the aid of an orange artfully placed into the foot and masquerading as the baby’s head, I demonstrated how the cervix (the cuff) could be pulled up behind the orange (the head), bit like an eclipse really. I recommended that if the cervix was posterior then she should clench both fists and put them under her buttocks, no, not punch the midwife. Once again using my sock containing the orange, I showed how tilting it would alter the degree by which the cervix (cuff) was posterior so making it easier to stretch, the cervix, and sweep, the membranes. Americans call it stripping the membranes as basically the aim is to ‘encourage’ the membranes to lift from the uterus. During this Hubby and son sat there exchanging uncomfortable looks, I suspect that it was a case of ‘too much information’. Hubby has announced that he is going out tomorrow morning!

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Day 10 +

It was with concern that I went to work today, I really didn’t want to leave son but my manager had made it clear that she expected me to be in so, in the absence of DIL going into labour, I put in an appearance. Within 10 minutes I was seriously regretting my ‘dedication’, why hadn’t I declared that I had the sore throat which is doing the rounds, after all I do have it, or told them that I am too stressed, which I am? Was I rewarded for my commitment, no. I have just spent the day feeling intensely resentful toward those midwives who have declared themselves unfit for work, so ensuring that I would not finish work until early evening. Yes, I am a grouchy grump who is full of self-pity.

Back to son. I was right to be unhappy about not being around to supervise. He and DIL went out this morning for a short wander around the local shops, they have bought me some lilies and my own tub of marshmallows but when they came home they noticed that the car had a flat tyre. What should have happened was that Hubby, who was at home, would have taken the car to the local tyre fitting place but no, son and DIL took it off to have the tyre replaced. Too much, too soon and he is suffering for it now. I have showered Hubby with guilt drops, as a penance he went and did the supermarket shop this evening, I feel that there is more mileage in it yet though!

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Day 9

Son is recovering but there are lots of ups and downs, especially with regard to the functioning of the stoma. It is obviously a case of getting used to it and realising that it is still early days and the intestines have suffered a great deal of trauma during the surgery, so they will not be working as easily, or reliably, whilst still swollen as they hopefully will in a few weeks. There was excellent news this morning though, the consultant phoned with the biopsy results and the inflammatory process was definitely ulcerative colitis, not crohns. That is excellent as it means that once son has recovered from this surgery and, fingers crossed, the ‘take down’ surgery he will be almost back to how he was 2 years ago and before his ulcerative colitis started.

Son’s moods are hugely variable, rarely relaxed, often quite short-tempered and frequently anticipating some complication. Every twinge is a possible sepsis, stoma not functioning for an hour, it’s obstructing, he is constantly undertaking a search for symptoms which may be indicating a complication developing. I suppose that he has experienced such a short, but intense relationship with ulcerative colitis, with suggestions that this drug may work, that diet will reduce the symptoms, but all ultimately failing dramatically, that he cannot believe that the operation will be a success. He has lost even more weight since the surgery, he refuses to weigh himself or have photos taken. He caught sight of himself in a mirror the other day, and was horrified by how emaciated he looks and so says that he doesn’t want any reminders of how terrible he looks. I think that it may be quite positive, especially if he gets down about his ileostomy, as he will be able to look back on the photographic evidence of how ill he was, and accept that his stoma has, quite literally, saved his life.

The stoma nurse visited today, and that was great, as she answered questions and reassured son, DIL and clucking Mother. She was also able to discuss the practicalities of ordering supplies, prescription charges and diet. Diet, what diet? Being a greedy little being I am oh so slightly jealous, no one has ever told me to eat high carb, low fibre food. A professional has never said to me ‘ I want you to eat jam doughnuts, chocolate, full-fat milk shakes and chips’, there again I have never been so thin that I find it painful to sit on a padded dining-chair.

Still no new grandchild. Stretch and sweep booked for Sunday

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