#stoma #ibd #ileostomy #colostomy – Page 5

October 22, 2017

No help for the families of IBD and stoma surgery patients?

I realised after the fact that my family just had to get on with it all without any real medical support, the support was all for us patients, and yes we needed it, plenty of it, but what of our families?

Most of us have been unwell on and off for years, and I don’t mean just a bit off, I mean full on housebound, bed bound, unable to attend events kind of ill. The year before my surgery I was a mess and my poor family rallied round and did things without me. I missed concerts that my daughter was in, quality time with my son when he was home from university, and my husband did everything and was marvellous. I had friends who did the running around for me too. Not everyone is as lucky and I cannot imagine how hard it must be for anybody who has to go through it alone. This would also apply for any type of chronic illness too.

My husband, wider family and friends watched me deteriorate over the year without proper support from anyone. The gastro team kept suggesting that although I had severe left sided disease I was also a bit depressed and should snap out of it. This was awful for me and my husband , because I thought he would believe them ( and he almost did, as they were the experts after all ) and I started to doubt myself, even though I was having temperature spikes, loosing a lot of blood and was constantly being sick. I couldn’t understand why I wasn’t being helped.

God only knows what my family thought. Yes I was ill, but was I as ill as I seemed? They had to wrestle with what they were seeing and what was being told to them. I had to wrestle with the feelings of illness and the thought that I was losing my mind.

Eventually my husband ignored the team and took me to A & E where I was admitted and was told by my surgeon that I needed a total colectomy within 72 hours ( it ended up being the next day, a Sunday). I remember my kids coming to see me before surgery was decided and I knew they must have been terrified even though we had discussed surgery within our family many times. My son said it would be the best thing and I would get off all those nasty drugs that I was given for the IBD. He was right of course, that was a good factor to consider.

As you can imagine, there were questions about why I had been left. But they never really got answered.

After surgery I was very poorly with complications and my husband came every day for nearly three months with me in tears every time. We spent our 20yrs anniversary on the ward, I was going to try and get to the Costa downstairs as our anniversary date( we live the high life ) but couldn’t face it. The ward had bought me a cuddly toy and anniversary card to cheer me up .

It took it’s toll on my family, and although I knew this, I was too self absorbed with my own problems to realise. Whenever I cried he said he felt that all eyes were on him and that they would think he must have done something to make me upset as I only got upset when he came. But in reality of course this wasn’t the case and the other patients knew I was in a dark place and very ill and often upset throughout the day, it just all floods out when a loved one comes to see you. The doctors don’t really have the time to sit with relatives and explain everything so they only hear second hand from the patients themselves and that can get twisted like Chinese whispers. I wasn’t doing very well so he arranged a visit from my sister in London as a surprise to see if she could help with my mood and get me moving more. I remember seeing her peek around the curtain and again I cried. This was becoming ridiculous. She talked me into getting in the wheelchair and taking a trip to Costa with them all. This was a military procedure as I had a rectal catheter in and couldn’t get very comfortable without a mass of pillows in strategic places, blankets etc.

I promised her I would try and get up every day, and I did. I wanted to do it for my family. I realised that I had been so self absorbed with my pain and worries I hadn’t even thought about my family’s feelings, I felt awful for this. It was the hardest months for us all. Even after I was discharged the journey wasn’t over. My husband would take me out in the wheelchair by the river , and each day we would get a little further and I would get out and walk back. There were times when I would be sick at the side of the path and I said on numerous occasions that I thought I would never be the same , would never be able to walk the whole path, would never nip to the pub for a quick drink with him after work (this one sounds weird to put in but this was something that we enjoyed and I missed). I wonder if he thought the same. He certainly never said, he just said that of course we would and things would get better. He was absolutely right but he must have had doubts.

In order for me to be allowed home he volunteered to empty and measure my rectal catheter twice a day, he would make sure I drank and ate enough, take my pills and generally be my total carer until I was well. He was my total rock but really got no support . He even packed my wound on several occasions so that they would allow me to go away for a few days. He is a tough cookie so many people think it didn’t affect him, but I saw the odd time when he could have done with someone out of our circle to talk to, but there wasn’t really anywhere specific to the needs of relatives in this situation. I have read many a story like mine with people who are in hospital for many weeks/months and their families just have to cope with all the ups and downs.

My friends had also left visiting times in tears seeing me in such a bad way. Everyone cared so much but they also could have done with some kind of support network. Maybe some information about what was happening and why, or a support group within the hospital for relatives and friends of those who have complicated illnesses or surgeries. I know this costs money and, to be honest, I would love to start something like this with the support of the wards, but I have no proper medical background so don’t think it would be allowed.

But I do have the experience, and that could be enough.

September 11, 2017

Tomas the stoma on holiday

Nerves are kicking in just slightly. Looking forward to going away with the girls to Spain, but still have some reservations regarding Tomas and my sinus etc….lots of potential issues.

Tomas is behaving pre holiday so that’s good to start with. Hopefully he is good while we are there.

As I was going away with close friends I was ok, but just because of my leak and bottom problems I was nervous on the way to the airport. I was given a Diazepam to calm my nerves and it worked a treat. I was totally calm, probably too calm as I fell asleep on the plane.

At the airport I had to go through the body scanner at East Midlands. I mentioned the ” bag” and all was well, I was just patted down and was on my way. They didn’t even swab me this time which I was surprised with because the bag was a bit full and could have been anything. We then had a coffee and then we were off.

After a few hours of me snoring on and off and waking myself up, we landed in Spain. It was lovely and warm. After we unpacked we went to the beach. I had two pina coladas and was totally drunk because of the Diazepam I expect. When we got back to the apartment I fell asleep, woke up later and felt brilliant.

I noticed a lot of looks on the beach at my bag, or maybe it was the cover with Tomas on , who knows. Because I am a member of a lot of forums and groups I see stomas and ostomates all over the web all the time and marvel at how many of us there are, so was mildly surprised to find that I appeared to be the only one on the whole of the beach each day. It brings it home just how uncommon it actually is despite the push from the media and us lot.

One woman said ” I like that” pointing to my cover, I thanked her and said I had had a big operation, she looked embarrassed and apologised, I think she thought it was a fancy bum bag lol. Now that is an idea !!!

I couldn’t go in the sea or pool because of the sinus leaking, I even had to wear a pad in my bikini bottoms. We went for some lunch and that was where I had an accident which upset me. Whenever I sit i tend to leak through the sinus tract, but this time I leaked through my shorts, my lovely friend Helen came to the toilet with me and took my shorts to dry under the hand dryer, and I changed the rest. I was in tears and felt so fed up. The feeling passed and I got on with it again. I was constantly checking myself though which was very annoying but it was something I couldn’t help. I remember lying in the sun with my friends next to me and knowing that I was the only one that would have to check my bag and my bum constantly, and would need to know where the loo was. luckily it was very nearby.

Talking of toilets, Spanish toilets are on the whole very nice. Their disabled loos are amazing. At the airport there were three disabled toilets, all were massive and clean, and had all the things you could possibly want. ( see previous post about toilets in Japan).

I changed my bag twice over the five days mainly because of the heat, I felt the skin was starting to itch but there were no other issues at all with the bag. I drank plenty of water ( and alcohol) and ate lovely food. I over did it one evening and was sick in the middle of the night, I say it was over indulgence, everyone else said it was mixing my drinks.?

I did enjoy the holiday and because the friends I went with are my very closest, I could relax enough to tell them if things were not great, but be open enough that I could change and air Tomas in front of them. I had fun, I drank, I ate and I sunbathed.

My stoma looked a bit like a dartboard though, white bits and red bits, but the red is just where the mouldable ring has pressed onto the skin and where I got a bit itchy with the heat.

On the way back from Spain, the airport again was non eventful, I didn’t even travel with a note about the stoma or any extra stuff relating to it. I just thought I would explain when the need arose, and it didn’t. They could hardly deny the facts. A few of us took extra suitcases and hand luggage, it meant I could take whatever I needed without worrying about space. Hand luggage on it’s own would have been a struggle, I wouldn’t be sure what to do with make up solutions , suncream AND stoma solutions in those see through bags.

I would definitely go on a girlie holiday again , but would be so much happier with the sinus gone. Having a constant leak is no fun at home, but on holiday it is a menace. The actual stoma side was ok up to a point ( you are never totally normal). There were some clothes I would have liked to have worn but the bag showed through a bit so couldn’t. Playsuits and some tighter fitting stuff, usually the lighter colours. I really need to invest in a nice not too tight stoma band, just to stop it dangling. If anyone has any ideas of comfy bands that are not totally tight like the support bands I would be very grateful.

The moral of this blog is… don’t be afraid to go away, nobody is perfect so why should you be the only one?

August 13, 2017August 29, 2017

Everything you wanted to know about a stoma but were too afraid to ask

I know that a lot of people don’t know much about stomas and would like to know more, either because they may need one in the future, know someone with a stoma and don’t like to ask, or are just curious.

All of these are ok.

I will try and answer some questions that I have been asked in the past, also if there are any questions you would like to ask, please feel free to get in touch.

WHAT DOES IT LOOK LIKE AND HOW IS IT MADE?

Ok, you may have seen photos of stomas and no two are the same.

Let’s start with a urostomy. This procedure is used to divert urine from diseased or damaged sections of the urinary tract. The most common urostomy is the ileal conduit. The surgeon will attach a piece of small intestine to the two ureters ( these are the tubes that carry urine from the kidneys), the other end is brought through the abdomen to form the stoma. There may also be a pouch made by the small bowel that acts a bit like a bladder that can store the urine before it is released through a catheter ( continent urinary diversion).

Ileostomy and colostomy are made with the bowel. Colostomy is when some of the large bowel is brought out through the abdomen and ileostomy is where a piece of small bowel is brought through.

This is a diagram that is one common way to bring the bowel through the skin, as you can see it is turned inside out and stitched to the skin. It is from www.insideoutostomy.life , a great site for information and keeping fit with an ostomy.

Tomas is an “outie” as he is quite long but some are almost flush to the skin.

Does it smell?

Yes, but only when you empty it. Same as going for a normal poo. The smells might be slightly stronger because the foods are not as digested.

Does it hurt?

Not the stoma itself, there are no nerve endings in the stoma. Sometimes the skin around the stoma can get sore, or we may get pain behind the stoma. on the flip side there is no control over when the stoma does its thing,so that is why we need a bag / pouch to collect the poo.

What does the bag look like?

There are various types, some are closed and you change the whole bag ( usually for colostomies) mine is a drainable bag because my output is similar to porridge, the colon was removed and that was where the water was absorbed back into my body. This also means that I can easily become dehydrated. This is the exact type that I now use, Pelican Platinum contour mini, and I really like it for comfort and neatness.

The drainable end is cleaned and the folded up into the bag and secured with velcro tabs, nothing can get out and it doesn’t smell at all when sealed. You can get them pre cut to size if you know the correct size for your stoma, or you can cut them yourself, this is better if for example your stoma is not perfectly round.

Can you have sex normally?

Absolutely no difference ( except it can sometimes sound like a packet of crisps rustling about ) you can also tuck it inside itself a bit to make it smaller. There are some really small ones available but non drainable.

What about bathing or showering?

Some people will shower without their bag, I personally don’t because it can get messy and you can bet that Tomas will decided to work just as I am drying myself, and because I like to sit up on the bed and air Tomas, I am happy to clean it then. A colostomy might be easier if you know when you might be about to poo, or at least you could take a chance after you have pooed. ( with some colostomies, the poo is more like a normal poo). With an ileostomy or urostomy this would be like Russian roulette.

How do you empty the bag?

Some people stand or kneel over the toilet, I personally prefer to sit. I will make sure the toilet is clean ( This is a pain in public toilets, people can be so dirty). I will then sit right back on the seat and empty the contents between my legs. I will often put a bit of tissue on the front of the bowl as this helps to flush it away cleanly. it is like a having a normal poo but quicker.

How often do you change/ empty the bag?

this can vary depending on the type of ostomy. My experience is I change it every 2/3 days, and empty it when I go for a wee, or if it is more active it can be more.

What about at night?

I will empty just before I go to sleep, and sometimes I automatically wake up in the early hours to a fairly full bag, this can be more wind ( yes we fart into the bag) and that makes the bag balloon. One thing, if someone farts and it smells, it won’t be us. I find that ballooning can sometimes cause a leak,then I have to change the bag. Once you leak, thats it, there is no quick fix.

Why do you need a stoma?

For me it was a bowel disease called Ulcerative colitis, part of a group of bowel diseases called inflammatory bowel disease ( Crohns disease is the other main one). For others it could be many reasons, trauma from an accident, cancer, diverticulitis ( another bowel disease which manifests as inflamed or infected pockets in the colon. others get obstructions which can lead to perforation if left too long ( as can IBD). There are some patients who require both a colostomy/ileostomy and a urostomy. These amazing people are affectionately called ‘Double baggers”.

Can you get pregnant with a stoma?

The short answer is yes, you can go on to have a baby normally. There are some small considerations that your stoma nurse or midwife can help you with. The stoma can change shape along with the tummy, so the bags may need to be altered through the pregnancy. Scar tissue can stretch and be uncomfortable, but this won’t cause any concerns for the baby. There is support throughout pregnancy.

Does it feel different without the colon?

i have to say that no, it doesn’t feel different. I did hope to be slimmer around that area, but unfortunately other organs move into the space.

What does it feel like to not have a rectum or anus?

I still get the feeling that I need to poo the old way. It is a total impossibility for me, as nothing is connected and I have no “hole” ( unless you count the annoying Perineal sinus after proctectomy. )

the urge is a phantom pain, like after an amputation ,which is what a colectomy is, an amputation. Everything is removed and sewn or packed shut. This is where the term Barbie Butt comes from, because it looks like a dolls bottom now.

Because of scar tissue, it is not absolutely discomfort free for now, but I hope in the future it will be normal.

If you would like to add any more questions to the list please use the contacts form.

July 22, 2017August 4, 2017

The waiting game.

This is my first post on my shiny new site. I am quite pleased with myself because I have designed and made it myself. Ok, it was a complete and utter mare doing it as I am quite a technophobe and it was far from simple, even reducing me to tears at one point because I lost a few things after pressing something or other and just did not know what I had touched to undo it again. Luckily it was just hiding and all was calm again.

Anyway todays post is back to bottoms. As you may remember I had my Barbie butt ( rectum, anus etc) removed in November after having lots of issues with the pelvic abscess still leaking through the back passage and rectal stump. I then acquired a sinus ( hole) that leaked. My surgeon said I may need another smaller operation to drain it but I was to have an MRI to see how deep etc it was. Anyway, just a few weeks before the MRI the damn thing stopped completely. I know this sounds like I didn’t want it to, which is not really the case, I just wanted to know what was happening down there and was worried that nothing would be seen. He had said he would see me at my next appointment to discuss my options.

I wasn’t too worried because it had stopped , so I could afford to wait to see him and explain that the leak was no more. My appointment was cancelled and rescheduled to May, again I thought ok. Then as that got nearer it was cancelled again this time until the middle of August. Again I was ok about it.

Well, that’s when it all went tits up in June. The leak has returned worse than ever and I now have to wait to see the surgeon. They have no cancellations and I still don’t know the result of the MRI. What if I see him and tell him that it stopped before the MRI but it is now back and he suggests another MRI as the first one did’t show anything and I have to wait again ? Will it still show a sinus tract anyway? I can’t even ask anyone. So I am in the waiting game , worried that they may cancel my next appointment too. He is obviously busy and doesn’t cancel clinics unless absolutely necessary but I am still concerned.

When I rang his secretary to see if he had looked at the MRI , even that was against me, the extension wasn’t in use anymore and I was redirected to another secretary who was temporarily looking after my surgeon too, so I don’t think she was very interested in my problems. But to live with a near constant leak from your bottom (that was removed and sewn shut I might add ) does your mental state no good. I am getting through Tena lady liners like no ones business, ( I like them because they are long ) and am forever aware of the horrible wet feeling. Not to mention how sore you get. It is strange but I almost know when it is about to cause a problem, I get a feeling of pressure like the hole has closed but is about to be stretched open again, I also get uncomfortable ” down there ” and don’t like sitting on hard chairs again similar to when I had the proctectomy. I try and think how lucky I am as I have recovered well over all, but the niggling bits are a right pain.

I am not alone. I have seen many posts from people who have the same issue, some have had many more surgeries to fix this awful issue. The one option is to have a gracilis muscle flap operation. this is quite a scary looking operation ( Yes, i have googled and youtubed it ) and i hope I don’t need it in the future. It involves using a bit of muscle from another body part and using it like some sort of packing. ….OMG I was just googling again to check the details ( yes I know ) and I have come across the name of a book that caught my eye………. ……………..” Grabbs encyclopedia of flaps”………….. excuse me while I have a childish giggle. Also wide excision and split-thickness skin grafting !!!! It all sounds too mind boggling for a mere mortal like me.

I shall certainly let you know what happens, I know my bottom is a riveting subject 😉

June 25, 2017August 7, 2017

What’s it like to live with a stoma?

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I have not been sleeping very well, having nightmares and generally blurggghhh. Woke up early and realised I had a small leak, but big enough to piss me off. I had to change my bag before work, and change duvet cover. I am glad it rarely happens to me and lucky that my husband is great about it all.

I normally like to change my bag when sitting up on the bed in the evening, its comfy and Tomas can get an airing for a good half an hour, so doing it quickly makes me uneasy, I worry about causing a rash because once they start, it takes a bit of sorting and can be unbearably itchy. I am blessed with a spouty stoma and not a flat one, so my skin isn’t too bad.

I go to work and all is good. I usually have to empty my bag about two or three times at work, but it’s not a big deal. I do worry about having a leak there though. I have no bed unfortunately, so will have to change it standing up ,eek.

For no apparent reason my output can be like water for a few hours, this means I usually have to empty a lot more. If you leave your bag for too long, it feels like the weight could unstick it, no thanks. So people, if I say I need the loo, I really need the loo.

I empty a few times in the evening and just before bed. This is usually when Tomas decides to wake up and be noisy as I am nodding off. I will then have a sixth sense at about 5am, and wake up to empty again. This is when my bag could be like a balloon, depending on what I have eaten. I am lucky that I can go back to sleep after.

Living with a stoma can be mentally and physically draining, but when things are running smoothly, it’s not too bad. For some, it can be awful, they have very sore skin, many leaks and really struggle to get the right products or help. For most, it saved their life and you have to learn to live with it.

I change the whole bag about 3 times a week all being well. You get a feel for when to change it, I start to get slightly itchy and like to change it then. I have never showered without a bag, having an ileostomy means I am incontinent, so I get output at any time, fine when you are actually in the shower, but not so fine when you get out and are trying to dry yourself. Same goes for a bath. Bags are waterproof and don’t come off in the shower or bath, so I just keep it on.

Life with an ostomy has its ups and downs, but I am glad I survived a terrible ordeal and yes it leaves scars, some visible some hidden, but I am here, and I am ok.

May 23, 2017August 4, 2017

Travelling with Tomas

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I was excited and apprehensive about going away for the first time abroad with Tomas. I had heard lots of different things, good and bad, lots of scare stories too. I was told my bag would blow up ( possibly not off, just like a balloon) on the plane. I read that the stickiness that held the bag onto my skin would melt, and my bag might come off in the heat. I might be taken to a room in the customs part of the airport and my bag swabbed. All these things made me a bit anxious waiting in the line for customs and beyond.

This is what happened to me.

I ordered a free travel booklet from Charter that had an explanation of my condition in various languages, I needed Greek and that was there too. There was a part that the GP could sign to say I needed certain things in my luggage. I was miffed to note that the GP wanted to charge just from signature, so I didn’t bother. I couldn’t see a problem there, it is obvious what I have. I still took the booklet just in case. ( and in case…. get it?).

Don’t give up the day job, I hear you say.

Anyway. We were flying at 6.40am eek. I packed some of my stoma kit in the big case for the hold, then some in my hand luggage too, with my adhesive remover and barrier spray in the clear plastic bag. ( I would struggle if I didn’t have the big case, as all my other fluids, makeup etc were in there. Not sure I could fit it all in the plastic bag). As we were in line for customs I noticed they had body scanners and most people were put through them. I knew I would have to mention the stoma.

As I walked into the machine I mentioned to the female customs officer that I had a stoma, and she was lovely. She said it would show up and they would probably swab the area too. She passed me to another female officer who was lovely as well. She discreetly took me to one side and just swabbed and scanned with a hand held scanner very quickly over the top of my clothes. She said, “There, no one needs to know”. I was very grateful and sent a thank you tweet to them via Tomas the stoma twitter afterwards.

After we took off, I kept checking my clothes for signs of ballooning, nothing happened. All was as it usually is. I had to empty once on the plane which was fun, as it was very tight in there and my output wouldn’t flush, I had to get some more loo roll and help it down then flushed again. That did the trick. The thought of having to ever change my bag in there was a scary one though, so I feel for anyone in that situation.

The holiday was wonderful and Tomas behaved himself impeccably. I changed him twice in the apartment and that was it really. I ate a fair bit so the bag filled up quite a lot, but my output was exactly as it is supposed to be, to the point that I only needed Loperamide once a day. The heat didn’t melt the adhesive either, and apart from a slight sore bit where the bag edge sits on one occasion, I wouldn’t worry so much next time I go away.

I even sunbathed with my bag out ( with Tomas cover on), I think I saw one or two people glance but that was all. With all the media coverage for ostomies, I don’t really care now.

On the way back through Greek customs, I got my booklet handy in case they frisked me, but they didn’t and I passed through without problems.

Bag ? what bag?

Don’t let it stop you, there is nothing to scare you except your own thoughts.

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May 11, 2017July 26, 2017

What is ulcerative colitis ?

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Inflammatory bowel disease,or IBD usually refers to Crohns disease or ulcerative colitis. They are thought to be an autoimmune disease where the body attacks itself causing inflammation, ulcers and many other manifestations.

Crohns can affect anywhere along the gastrointestinal tract, from mouth to anus, and colitis affects the colon (large bowel). They are life long chronic diseases, and although surgery can get rid of ulcerative colitis, you may still get other symptoms affecting your body, that are associated with the disease. Crohns disease cannot be cured.

I had ulcerative colitis for about 30yrs, and when I had a flare up I would spend most of my days on the toilet, feeling very poorly indeed. Because the bowel would be swollen and ulcerated, stool would be thin with a fair bit of blood and pus. Crampy pain would accompany a flare, as would tenesmus, this means that we have the most intense urge to go to the toilet even whilst sitting on the toilet, and passing anything does not relieve that feeling.

Ulcerative colitis starts at the rectum which is proctitis, some people think this is a milder form of the disease but it can still be severe in that one area. If it travels into the sigmoid ( between rectum and descending colon) it is proctosigmoiditis. If it involves the descending colon, it is termed left sided colitis and distal colitis. Pancolitis is when it affects the whole large intestine. I started with proctitis, then it moved through the sigmoid with more in the descending colon. In the past I have had it across the transverse colon too.( see diagram) Normally left sided colitis can be treated with medication, but sometimes as in my case, the bowel was so severe that medication didn’t help. You can have fulminant colitis even if it is only a part of the large bowel, as fulminant means that symptoms are very severe with temperature, distention , continuous bleeding and generally in need of aggressive treatment. You can have fulminant left sided colitis.

Ulcerative colitis is assessed by colonoscopy, sigmoidoscopy, MRI , CT scan, barium meal or enema, stool samples and blood tests. Sometimes you may have indeterminate colitis, which means that the signs and symptoms cannot be differentiated from crohns of the large bowel. This is what mine was called, and even after surgery, it was decided it was MOST likely ulcerative colitis and not crohns disease, so I keep my fingers crossed.

Because the disease was pretty bad in my rectum, I wasn’t a candidate for a J-Pouch. This is surgery that connects the small bowel to the rectum forming a reservoir with some of the small bowel. This can enable a patient to use the toilet normally again. I have now had my rectum removed anyway, so no going back.

As I mentioned, colitis can also cause other problems that may never go away, these are inflammatory manifestations of the eyes, skin, liver and joints. Arthritis is common, as are skin conditions called Erythema nodosum ( deep tender nodules often found on the shins) and Pyoderma gangrenosum which are nasty ulcer type lesions that can vary in size, they are found mostly on the legs but have been found on other parts of the body too. Aphthous stomatitis is a type of mouth ulcer found in Crohns and ulcerative colitis patients. Episcleritis is an eye inflammation affecting the episclera.

Many others are often present but too many to go through with this blog, I suppose what I am trying to put across is that ulcerative colitis is much more than a bowel disease.

Mentally, it is a strain when having a flare up. You are unable to function properly , and although you look reasonably ok, you are often very ill. A lot of people put on a brave face as they don’t want to be seen as a moaning myrtle, who is always ill. If you are lucky like me, you have a supportive network around you. I had to rely on many people before and after surgery, and this was the case over the years too. Flare ups can vary , they can be fairly mild and clear up within a couple of weeks, or they can grumble along for weeks, months and years. When I read of the struggle for some people, I wonder why surgeons are not called in sooner, I certainly wished I had surgery earlier. I think on some occasions ,we are left for far too long by medics who are trying but failing to keep things at bay , and won’t admit defeat. I know this is major life changing surgery, and they are doing what they can to avoid it if possible, but I feel that sometimes it is quite obvious what the outcome will be.

Surgery for colitis is removal of the large bowel, rarely they will rest the bowel with a temporary stoma, but mostly its all or nothing. If you are one of the lucky ones, you can be a candidate for the J pouch surgery, although this is a big surgery with its own risks and failure rates. The rectum can be left for re-attachment, or removed. Mine was removed and sewn shut. It all sounds pretty scary, and it was, but you soon get used to it, and for me it was all worthwhile as I feel very well now.

May 7, 2017

Does my bag look big in this? What about the rest of me?

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I thought I would chat about body image. We all worry, me too.

It has come to my attention that we all spend too much time worrying about the way we are perceived by others, and that includes how we look. Now, I am a born worrier about everything so I speak from experience in the subject.

When I was younger right up until I hit 40, I would say I was pretty skinny. So did everyone else. But, although a lot of people said they wished they looked like me, there were some who were downright rude.

One friend said she wished she was thinner, ” Not quite as thin as you though Clare” hmmm nice. How would they like me to say ” I wish I was fatter, not quite as fat as you though” that would go down very well.

I went to see a comedian in Blackpool years ago, and we were a loud table so he picked on us, actually he picked on me. He invited me onto the stage, big mistake.

” lets move the mike stand so they can all see you”

“I am going to tell a joke, you’ll laugh your tits off, oh you’ve already heard it” Yes I know, its funny, but can you imagine a teenager with hangups on that stage? I was distraught.

Ulcerative colitis then appeared, and my body image changed again. Skinny legs and fat belly, lovely. Bloating with inflammatory bowel disease is not nice, I had a few people ask if I was pregnant on many occasions. This pot belly look lasted until surgery really when I was 49, but I also got more meat on me elsewhere. I liked the fact that my boobs grew, but not my arse or hips.

I have also been “blessed” with pale skin and freckles and moles. I would love to be a nice tan colour but it takes 2 weeks in Corfu laid out all day to go a great shade of pink. Fake tan is better nowadays but I do worry that I have damaged my skin over the years. I have jealousy when I see the perfect bod.

I have crooked teeth, ( I bet you are dying to meet me, I sound gorgeous), I haven’t smiled on a photo with my mouth open and teeth showing for years,except when drunk and I don’t care, so now I am doing something about it. My top brace is going on in a few weeks.

I was about 10 stone 10 pounds before surgery, which is reasonable as I am 5ft 7.5 inches, when I became poorly I went down to under 8 stone and ended up with saggy skin and old persons hands. We can’t win, there will always be something . I started to put weight back on after surgery and got to about 9 stone, I liked 9 stone, I felt ok, my skin fitted again and because my large bowel was removed my belly was quite flat, I thought ( wrongly I might add) that because the bowel was gone, my pot belly would be forever gone. But alas , something else has moved in. I can’t stop eating and am now 11 Stone !!!!???? and my belly is returning. Whats that about???

I turned 50 last year, and about 2 days after, received a flyer for Saga over 50’s. I felt older than old. How could I be fifty? I was in the OAP bracket for SAGA flyers.

I have fine hairs above my top lip, I am not sure whether to have a top lip wax, but I might end up with a red rash, do I keep the moustache or opt for a sign saying ” I had my lip waxed, look here”

Not only am I looking to see if my stoma bag is showing through my clothes, what about all the rest of my baggage?

May 6, 2017October 3, 2017

So far so good with the bum thing

I forgot to let you know how one of my previous posts “A pain in the arse ” was going.

Very good is the answer. I went to see my surgeon about the small hole that leaked after the proctectomy. It was called a sinus and can heal itself sometimes. Other times they need opening and draining, sometimes they need much more serious healing strategies, like using skin from your thigh and covering the scar with that. I have no idea how any are done and how they work, but needless to say, I hoped it would be the first option.

Well , he said he would book me in for an MRI of the pelvis and rectum to see how superficial the sinus was, and go from there. I had been leaking for months now so was pleased something was being done. My MRI wasn’t immediately and my next appointment was for the end of May, so still a while to wait.

Well would you believe it, the leak stopped dead about a week before the scan, and hasn’t reappeared since. I am pleased and just hope it stays that way. My appointment to see him with the results has been moved to August anyway so its a good job.

So the moral of the story is…. have faith that things will work out usually, and not panic about what could be.

May 2, 2017

What on earth can I wear?

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I have to say that I just cannot get on with stoma support wear. In all honesty I have only tried the one we get on prescription similar to the above picture. I just find it tight and restricting, my skin around Tomas starts to itch too.I worry that when the bag starts filling, it will squish it and it will leak. I think I won’t be able to tell when it needs emptying. I would like a nice lacy very stretchy and not too tight, band. I have seen some that look nice but don’t want to spend money on them if they are not right, so if anyone has some nice support wear that I have described, please let me know.

I must say, I do quite well with clothes now. For months I wore leggings and that was about it. I still love them for comfort but I have worn dresses and jeans. I have always worn high waisted jeans, as they are much more comfortable than the low or mid waisters that cut into your tummy and you can’t sit down and eat without being really uncomfortable.

I wear skinny jeans quite happily and tights dresses too. I used to think everyone and his dog would see my bag, but they really can’t. It is something that you get over with time.

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I still scrutinise myself before I step out the door, but when I first had Tomas, I wore for comfort and covering up. I thought I had to wear loose tops/tunics and shouldn’t wear tight things as I saw myself as flawed. My only issue with a dress is when my bag starts filling , it flaps about a bit unless I tuck it into my pants, and you can notice it through the dress. This is why I thought a stoma support garment might help, it probably does as far as flattening it all, but I just feel as though it is doing something that I can’t see. At least I can tell when I need to empty if the bag is loose.

As far as sex goes, it is no different than before surgery. ( Except it sounds like a bag of crisps between us ). I would still like a nice lacy something, to cover it, but really want it to be comfortable. I am very lucky that my husband is fantastic and doesn’t see the bag whatsoever. So I am not at all bothered about showing it in front of him.

I still wear baggy or tunic tops, but again more for comfort than self confidence. I am not ashamed of my body and scars, in fact I am very proud of them. It shows what I have been through and overcome.

It is very inspiring to see my fellow ostomates getting on with it and looking fabulous at the same time. I am going on holiday in a couple of weeks and aim to wear my bikini with pride. Watch out for my next blog about flying with a stoma and being abroad.

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