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Getting the Bag: My Ileostomy Diary |
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 Friday 22nd March 2002
I'm currently in hospital having IV treatments for my Crohn's which include most of my oral medication, plus IV hydrocortisone four times a day and cyclosporine immunosuppressant by infusion twice a day taking two hours a time.
I'm feeling a bit grim at the moment having been sick most nights, and still getting stomach and abdominal pains , and also lower back pain. The hydrocortisone has given me some strange mood swings too- I can range from feeling euphoric to feeling downright depressed. I had a good cry this morning for no apparent reason. We had a little hiccup on Tuesday night when the ventflon (IV tube) came out of my vein and the cyclosporine went into the surrounding tissue and made my elbow swell alarmingly. It wasn't serious and had gone down by morning.
The hydrocortisone has made my face puff up really badly again, but I'm not too concerned about that at the moment. That'll be an issue to deal with when I feel on my feet and a bit better. At the moment, I'm mainly concerned with the fact I feel like I don't want to eat because of the after effects of food. I'm getting such sickly feelings that I don't want to eat, although I have a large appetite and want the food initially. I've also had to have a laxative even though my stools are loose because the stricture has caused me to be all blocked up. I'm due another abdominal x-ray to check up on this.
On a more positive note, I have met another lady on the ward with Crohn's. It has been good for me to discuss bowels and an experience with someone who understands what's it's really like. So far, I have only spoken to people online.
I'm due to see the surgeon today to meet him, and the doctor today says we may have to look at other options to the cyclosporine. This may include Remicade, although I understand that to be extremely expensive, so I'm not sure what the local Health Authority does about funding for that. It costs £4,000 a treatment, which is very costly indeed.
Monday 25th March 2002
On Friday I was put on TPN (total parenteral nutrition). This is a liquid feed, fed directly into a major vein (in my case, my neck). I get fed 3 litres over 24 hours, and until today have had no other food in order to rest my bowel.
It has really helped, because the nutrition is going straight into my bloodstream. Nothing has gone into the bowel at all, so I have had none of the usual pain and sickness I get with my stricture. It feeds me 2500 calories day, essential nutrients and liquids.
I am to have a bowel resection on Tuesday to remove part of my small intestine including the stricture. I will be given an ileostomy bag. However, it might be a permanent ileostomy. The surgeon needs to assess how diseased my large intestine is, and whether a large portion requires removal. If the bowel is ulcerated on the outside, it will have to be removed. However, if I am lucky, it may only be ulcerated on the inside, in which case it will be rested and the ileostomy will be temporary rather than permanent. They'll join me back up at a later date.
I have been expecting this outcome for some time, and am quite mentally prepared. Obviously, a permanent ileostomy is a scary thought, but I have balanced it carefully against the alternative of great pain and vomiting after eating anything. I am quite relieved- there finally seems to be a light at the end of the tunnel. I can now look forward to reducing my medication, and my gastroenterologist has said this will give me prolonged relief. The Crohn's may well come back in another part of the bowel, but with any luck, I should get a satisfactory period of remission from this step. The ileostomy bag will allow me to have more control over my bowels. I've read up on them, the procedure and the after-effects, and am confident I can cope with the change. I will have help with care for the stoma, I am sure.
I have taken some clear soup and jelly for tea tonight. I am required to build myself up for the operation now, and I will stay on the TPN as well. I guessed I was being fattened up for the op when they said I was having 2500 calories a day- the normal daily intake for a woman is about 1600-2000! I feel like the Christmas goose! Of course, for medicinal purposes, I will be eating a smuggled-in McDonalds this week. Big Macs are excellent build up foods, you know!!!
Wednesday 27th March 2002 : Bowel Op Countdown- 6 days until my operation
6 days to go until my bowel resection. I have been reading up on the procedure in the 'Living with Crohn's Disease' book by Joan Gomez which I brought to hospital with me. I have found it interesting and informative. I have also arranged to see the stoma care nurse prior to my operation so I can get the low-down on the ileostomy.
I would like to see an ileostomy bag before-hand, and chat through various aspects of the care, placement of the bag and the stoma opening- what it will look like- that kind of thing.
I am mentally preparing myself for a permanent ileostomy, which is the worst possible scenario. If I have to only have a temporary ileostomy, it will be a bonus.
I have been suffering with bad arthritic pains in my knees as a result of the Crohn's. I'm still getting tummy pains and nausea when I eat, so this affirms my need for the op. I am very, very bloated on the high dosage of steroids. I can't even do up my previously loose trousers- they press on my tummy and make me vomit. Not long to go now!
Thursday 28th March 2002 : Bowel Op Countdown- 5 days until my operation
as it's Easter weekend, I've had all the visitors today! I've been visited by the gastroenterology team, the surgeon, the stoma care nurse, the anaesthetist and the surgeon's team member for me to sign my consent form!
I am utterly exhausted. I have been up since 2.00am with agonising leg pains. I now have a nice pair of anti-embolism tights to wear! They're helping though. They have put me a strong pain killer on my drug chart tonight.
I have been through a lot of information relating to the operation today. The stoma care nurse bought me some leaflets and a sample ileostomy bag. She was really nice, and explained things really well, putting my mind at rest. The bag is quite flat, soft and doesn't look too bad. We have marked my tummy where it will go, and I have stuck it to my side to try it for size. You could barely tell it was there! The bags come in three sizes- even little ones for swimming. You wouldn't be able to see it under a swimming cozzie, I don't think. It looks quite easy to care for. I feel much better already.
In terms of surgery, I have now signed my consent form to give the surgeon permission to remove my large bowel if it is too bad to save. They won't remove healthy tissue, or any more than they need to do.
The nature of bowel surgery is such that I have three potential options that could happen:
A straightforward bowel resection with no ileostomy bag
a bowel resection with temporary ileostomy while my bowel heals- if my colon is healthy enough
a permanent ileostomy if the outside of my colon shows ulceration. This will indicate it is beyond repair, and my stoma will be permanent fixture. My large bowel will be removed, leaving only my rectum. My small intestine will come out on my tummy, where the stoma will act as a new 'bottom'.
For definite, my stricture and manky bit of caecum with ulcers will be removed. This will considerably improve my quality of life as I won't be suffering pain and vomiting after eating. I am mentally preparing myself for the permanent ileostomy. Anything less will be a bonus if it happens.
The anaesthetist gave me the options for pain relief when I come to after my operation. I can either have a morphine syringe, dispensing it myself when I need pain relief, or have an epidural as mums have when they give birth. I have opted for the epidural. It will be put into my back, and make my legs numb. I will have a catheter, and a clear ileostomy bag so they can keep an eye on my new stoma. I will be recovering for at least 10 days, although the fact I have been on two lots of immunosuppressant may make me more susceptible to infection.
The best thing of all is my steroids are now being reduced. I won't need them after the op! If you saw my moon face and the amount of water I have retained this week, you would understand my complete happiness at this news! My budesonide has been stopped, and the hydrocortisone will be reduced gradually after my op.
I have gone back onto clear fluids tonight’s. I'm still on TPN, so don't feel hungry as such, but it was nice being able to have a chew on things. I won't be having bowel prep for the op either, which I am extremely pleased about! No enemas or laxatives, both of which I can't tolerate well.
Friday 29th March 2002 : Bowel Op Countdown- 4 days until my operation
I have been totally exhausted today! The leg pains have really worn me out! Last night I had a new drug which made me sleepy, plus some morphine-based painkillers.
It's apparently arthritic pain- an external manifestation of Crohn's. I'm feeling a bit hungry, and it's not nice not having any food! I'm feeling a bit worried about the operation. I'm looking forward to going home with a new change in my life, just the operation is a bit scarier than it seemed yesterday!
Saturday 30th March 2002 :Bowel Op Countdown- 3 days to go
I was going to be moved to the surgical ward today, but a man came in as an emergency and I've had to stay here on the medical ward... in my own room with TV and toilet.... a shame! I've been looked after so well here, that it really was no hardship. I may move down tomorrow or Monday.
I'm still on a clear liquid diet as well as TPN. This means for me that every meal is this thin soup with jelly. However, it's not bad. It seems to fill me up, and it's just something to taste. It's funny how food seems to feature so heavily in daily life. You really miss the routine of it!
My gastroenterologist is away on holiday now, so I've been under the care of Dr Ramage, who initially diagnosed me. He thinks the pains in my legs are a result of my medication. The hydrocortisone and azathioprine are to be reduced. I am very swollen all over now. I can't fit into my clothes, and even my fingers have swollen, arms, legs, belly, face- you name it! I have become temporarily diabetic whilst on the TPN. They are given me tablets to control my blood sugar level. I am also on a tablet called amytriptolene to control my leg pains. It's an anti-depressant, but is good for numbing pain. I had to giggle because it's used to control bed-wetting- I'm on the lower bed-wetting dosage! I feel quite mellow on it- no wonder! Mellow and dry at night!
Sunday 31st March 2002 :Bowel Op Countdown: 2 days to go
Less than 48 hours to go now! I'm really bloated so Dr Ramage has taken me off the steroids in time for the operation. I have a rash come up on my feet which is likely irritated blood vessels. No leg pain last night though, which is a bonus. I noticed I'm only on 100mg a day now of azathioprine.
I'm looking forward to doing things coming out of hospital. I'm going to get some new clothes once I deflate, a new haircut, go out for a slap up meal (steak and chips) and go and get a new job. I'm just going to get out and about generally.
I hope to get down to the surgical ward soon, so I can get settled in time for my operation. I'm not sure if it will be today or tomorrow though. It will be a milestone for me. I'm sending the laptop home with Shane today. I'll update this diary when I get home with my new ileostomy in tow!
On the 2nd of April I went for my operation. I had what's known as an extended sub-total colectomy. They had removed most of my colon and a foot of small bowel.
I was left with 6-8 inches of sigmoid colon and my rectum. I had a mucus fistula, a small opening on my tummy where the last piece of bowel was sewn. Bowel mucus would evacuate here and be caught by a small round stoma cap. I had an ileostomy bag but would also use the loo normally to pass small mucus stools from my remaining bit of colon.
When I came to, I was connected to lots of machines and was wearing an oxygen mask. I had a catheter to pee & a gastronasal tube and pouch safety-pinned to my gown. The tube went down my nose into my tummy so if I was sick, I didn't actually vomit. They syringed the bile out of my tummy through this. Apart from looking stupid (they stuck the tube to my nose with a huge plaster!) and being able to see the bile coming up (grim but interesting!) I was very comfortable. In fact, I didn't even need to move at all- all my bodily functions were taken care of.
As I lay immobile, I took a glance down at my abdomen. I noticed had two ostomy bags . I panicked- surely I wouldn't have to put up with two stomas? In fact the lower bag was to cover a mucus fistula. It was explained to me that my remaining piece of colon would continue to produce some mucus. The fistula allowed this to exit and the bag was there just to catch blood and debris remaining from the surgery. In a short time, the bag would be replaced by a small stoma cap to catch the mucus. It surprised me to learn that I would still be having normal bowel movements and may feel the need to use the loo normally because the body would want to expel the mucus. The mucus fistula was where the remaining piece of my colon had been sewn so that it could be easily found when I had my reconnection surgery.
I was quite comfortable. An intravenous neck line had been put in while I was under aesthetic in surgery. It was a tube that went into my neck vein so that all my medications could be administered into it. It had 4 ports and was a fancy version of the ventflons they put into your arm/hand to administer medications. I was to be fed through this, have my steroids, anti-biotics and extra fluids.
I settled quite happily with morphine PCA (Patient Controlled Analgesia) where I could push the button for pain relief whenever I felt a twinge. Apart from being stiff and uncomfortable generally, there was no pain as such.
My first proper dinner after the operation was heavenly. I sat and waited for pains and nausea but they didn't come. Neither was there any diarrhoea. For the first time in well over a year I was pain free, and diarrhoea free for the first time in three years.
I soon realised that I wasn't going to be able to laze around all day in my comfy bed with tubes doing everything for me.
Within a day or two, I was getting sat up in bed and in my chair. The physiotherapist came to visit me daily. We first started with breathing and coughing exercises so I didn't get fluid on my lungs. As I gradually lost the pipes and tubes (my lovely sick bag was the first to go- I had gotten quite attached to my new plaster look) I was taken for short walks down the corridor and then onto learning to climb stairs. That was a shock- I was used to skimming up and down stairs. Now my body felt as if it were made of lead.
It is extremely surprising how weak you feel after the operation. Things you took for granted like sitting up in bed are sometimes nigh on impossible. I got stuck half-way through sitting up a couple of times and had to ring for the nurse. If I needed to use the bathroom, I had to plan at least 10 minutes in advance so I could get out of bed.
The physical adjustments were not as great as the mental ones though. Fortunately, there was a team of people behind me to help me with this also. The stoma care nurse, hospital chaplain, Macmillan nurses and ward nurses were all there to help me learn to cope mentally and physical with having a new ileostomy.
I had the post-op blues and felt like crying for some days. But the hardest thing of all of yet to come.
I was in my bed about a few days after my operation when the stoma care nurse dropped by. She was going to the change my ileostomy bag and it was to be the first time I would see the stoma.
Peeling off the backing plate to the pouch, I was confronted with a little pink, pulsating thing . It then hit me that this was a bit of intestine that was wiggling and spewing out debris. I refused to touch it or participate in the cleaning of it. In fact, I barely imagined that I would ever be able to do this. I felt faint, even though it had no nerves in it and I couldn't feel pain from it. It didn't even look too bad.
In fact I dreaded having to care for it. When the nurse visited the next time to change the bag and clean the stoma, I opted just to watch again. I was repulsed by it. I shudder when I have to clean out my tummy button- this was a zillion times worse.
Crunch time came when the registrar visited. He said we should aim for me to go home on the Thursday providing I could change my own stoma bag. After almost a month in hospital in total, this was a huge incentive. The next morning I took it upon myself to go into the bathroom and the change the bag myself. It took me twenty minutes and I was shaky, but I did it.
I got to go home after only 9 days after my operation. It had already changed my life for the better. I ate and started going out without having to look for toilets.
Tuesday 16th April 2002: Starting a new life with my stoma
every day I feel stronger and more able to get around. The daily improvement in my strength is really quite astounding, although I still feel tired and my legs are bandy and weak. The stoma is really easy to care for. I also have what is known as a mucus fistula. This is a tiny little stoma coming from the saved bit of sigmoid colon. The colon produces mucus which aids digestion, and a little bit of this is still produced, so it drains into a tiny little round stoma bag. This is likely to dry up in a few weeks.
My stoma was active at first and produced a lot of liquids. I had to empty my ileostomy bag out about 8-10 times a day. It has now calmed down a lot and produces a mush which needs only to be emptied about 4 times a day. It's much better than getting caught short and needing to run to the loo. I can feel the ileostomy filling up and can plan my trips to the loo. I wore my tight jeans yesterday, and you couldn't tell I had a bag there. The strange thing is, with this operation I still feel the need to go the loo as I have retained enough bowel. All that is produced is the mucus, and barely any at that, but it keeps everything in working order until I get reconnected, which is reassuring.
Cleaning the stoma is a bit weird! It is pink and pulsates where it is live bowel. It also has no nerves, so you can't feel it when you clean it. It looks like a cross between a glace cherry and a little octopus with no legs! After the first time of changing the ileostomy bag, which was a bit daunting, I was OK with it. It's a lot better and seems more hygienic than using the loo normally.
The worst bit about it all is peeling the sticky bag off your tummy- it's like a big plaster and I'm a woos with plaster peeling! Once you've done that, the rest is a doddle! If anyone has to have this operation, I really can recommend it. It has improved things for me no end already. I went to the library yesterday with confidence, and have really been enjoying my food!
Thursday 25th April 2002: The Case of the Killer Closed-cup
After eating dinner last Saturday, I started to get some really bad stomach pains that were coming and going in spasms. All day, I had only passed water from my stoma, which was unusual. By Saturday night, the pains were excruciating, so we called out the emergency doctor who referred me to Accident & Emergency at our local hospital.
The A&E doctors said it could be a blockage, or even my bowel could have twisted, in which case I was looking at another emergency operation. They gave me a dose of morphine, and gave me abdominal and chest x-rays which showed some distention in the gut, but thankfully no twisting. It was therefore a blockage, which didn't surprise me because the pains were very similar to what I felt when I had my stricture. I was admitted to hospital until Monday. Well, all that for the sake of a mushroom. It's hardly going to inspire any episodes of ER, but there you go!
It feels like I've spent more time in the hospital than I have at home since February! It meant more shots of hydrocortisone, which I wasn't happy about. Thankfully, the mushroom passed itself, the bowel got working again, and I got back onto oral medication rather than the dreaded IV hydrocortisone which makes me look like a hot air balloon! I've just started to deflate a bit, although my face is still really fat. It's not as bad as it was though. Other than that, I'm feeling quite well and the stoma isn't too bad. My operation scars seem to be healing alright, although one part has gone a little infected where it is under the adhesive of the ileostomy bag. Life has improved considerably since I had the operation, and food is going down well! However, I must avoid mushrooms, and any other food which does not digest well or is stringy as they cause problems for stomas.
June 2002: Me & my stoma (a match made in.... hospital)
It's been just over 8 weeks now since my operation- the recommended time for healing and adjustment.
I seem to have healed up pretty well, and life is much better since I've had the ileostomy. I'm looking forward to having it reversed though!
There's no more being sick after meals, rushing to the loo, having blood and mucus in my stool or feeling ill generally. I'm able to eat normally now that my stricture has been removed.
I have learned to look after my stoma. I initially had a lot of problems with it. At first it was OK, but then it started leaking a lot. When my stoma care nurse came to visit me at my home, she looked at the stoma and told me it was a bit flat. In addition to this, the exit was on the side rather than on the top of the stoma. Both of these conditions allowed the waste to get under the backing plate of the pouch. Result... mess!
So I got a convex backing plate- slightly shaped to press in my tummy so my stoma sticks out. That seemed to do the trick. I was using a one piece pouch, but decided to try the two piece, which I have found much more convenient.
June 28th 2002
It's now been almost 3 months since my operation, and I've settled quite well with the ileostomy.
Most of the time, I barely notice the bag is there.
10 months on
I have settled with the stoma quite well now as life has improved beyond measure since I had it done.
They say give it 3 months to learn the basics of an ileostomy, 6 months to really get used to it and a year to become totally confident and I would have to agree with that advice.
I have become increasingly more confident with the stoma and it has become less scary to me. I now regard it as part of me, whereas before it was like a low budget version of the Alien films in my eyes!
I wear whatever clothes I want, although I have to pick certain styles with the stoma in mind.
Eating is a delight because I have been in remission since I had the op. I am now a healthy (if not a little too healthy!) weight and have colour in my cheeks. I can enjoy food without pain, and eating out is a regular treat for me. Trips are no longer planned around toilet facilities and I have enjoyed many days out.
I started a new job and told them all about my ileostomy and my condition. They took me on nevertheless, and have been very understanding and accommodate my medical needs.
All in all the operation has improved my quality of life no end!
 on September 21 2003 01:00:32
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