Colorectal surgeon appointment today

Ok, so I have been waiting quite a while with a persistent perineal sinus, I had to have an MRI and this has been ongoing since Christmas 2016.

This morning I went to see my lovely surgeon, and I got the results of the MRI and his opinion.

Apparently I have a sinus tract in the wound AND a cyst. According to the radiologists, they are not connected. My surgeon is not so sure so he needs to speak with colleagues and radiologists to discuss what sort of operation I may need. It may be a simple laying open of the sinus tract to drain the contents properly ( when he says simple, that is simple to what  I have had before). Otherwise he said it was possible I may need a more extensive surgery and in that case, he needs to consult a plastic surgeon so that the sinus has the best chance of not returning. ( Thought he was going to say , so that I would have a nice neat bottom afterwards , no such luck)

If the former, it will be a quick straightforward operation, if the latter, it will be more extensive and longer recovery ( but he assured me it would be nothing like my first operation which I was in hospital for nearly 3 months, glad to hear that ).

All in all, much as I thought except the added cyst. Could still be waiting a while…..

 

 

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.

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.

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.

 

 

Consequences for IBD patients when consultants can’t commit

This is a subject close to my heart and a very controversial one. There will be many people who are concerned with this subject but I feel it needs to be said.

I am a member of many IBD and stoma forums and the most overwhelming subject that keeps cropping up is patients being left to the “wait and see” approach. This to me is very dangerous as I also note that many patients’ bloods and observations are not indicative of the disease progression. These patients are being left in an unbearable position, in pain and suffering and for many this carries on for many months. It also means that if surgery is later than it should be, then the consequences of that can be major. There should not be anyone that is having life saving surgery for IBD ( there are some exceptions, like toxic mega colon that cannot be foreseen ). But I do know from experience that surgery could have been sooner with better outcomes.

I was one of those patients. Yes my consultant knew I had severe left sided disease, although it was constantly put down. It started as severe proctitis then gradually worked its way round to the left. I was feeling extremely ill, and my bloods were showing this at times. I was having temperature spikes, but because it wasn’t happening in clinic, I was disbelieved. I ended up with emergency surgery with no chance of reversal because my rectum was too severely diseased, to the point that I had rectal stump blow out, a major rare complication. I was also nutritionally poor before surgery.

These concerns are real and need addressing, the surgeons seem to have the right idea, ” don’t wait” . They are the ones that have to operate on people that could have been much better in health and now have many issues that could bring poorer outcomes. It will be the surgeons that have to work with what they have been given. I am sure the consultant GI’s are trying to do what they think is right for a chronic condition but I implore you to listen to the patient and take a leaf out of the surgeons’ book.  It doesn’t mean you have failed ,it means you haven’t. I know that IBD is a complex and unpredictable disease with many forms, and very difficult to treat, but if treatment is not working anymore then enough is enough.

 

 

 

Leaky Barbie Butt continued ..

 

You would think that having your arsehole removed would stop anything going in and coming out of it, but oh no I am left with a perineal sinus that is such a massive nuisance. The other thing that is annoying is the fact that because I can function near normally I am put on the back burner by the medical profession.

I don’t mean to moan, ok I do, I understand that many people are very sick and need urgent care, which I was one of them last year, but if an operation leaves someone with a drop in their quality of life then please don’t leave me for 8 months in that condition. I didn’t even know that a sinus could form let alone know that I might be a good candidate for it. ( I had a  rectal stump blowout which caused pelvic sepsis). Could it even cause more serious issues if left? I am left with this constant drip drip which I am sure you can imagine is not much fun. You get very sore and constantly aware of that wetness, not nice when you are trying to get on with life.

My appointment is in two weeks ( fingers crossed that it doesn’t get cancelled again) and I cannot wait. I know something needs doing but I also know that I will again have to wait.

 

When your stoma bag leaks… such fun

I consider myself one of the luckier ones,  because I leak once every couple of weeks, or maybe months, rather than daily/weekly like some on my fellow ostomates. In this day and age it is not really acceptable to be leaking poo on a regular basis. Yes, the bags have come a long way since the first rudimental type bags but I still feel that the perfect bag is allusive.

There are different parts of different bags that I like and would love to fit those bits together to form my perfect bag. I would have the Pelican base with coloplast material. I would insist someone told me what on earth the filter is supposed to do and whether we really need it. Also why can’t ballooning be a thing of the past? there must be a way to eliminate that. Ballooning in where gas / wind blows the bag up like a balloon, but in my case this seems to aid my leaks. I also love the mini bags as they are much neater.

If I have leaked, I usually find I wake up at about 5/6am with a leak on the right side ( as I look down at it) I think it is because I sleep on the left and if the bag is slightly heavy it will pull down to the left and that is how my leaks start. Not much fun to wake up at that time having to take off the duvet cover with a piece of tissue tucked under the side of the bag that is leaking and put the duvet in the washing machine, tidy yourself up and change the bag.

I leaked this morning in exactly the same way, but I know there is no real rhyme or reason to this event, but it brings it home to you that you are not that “normal” after all and in fact when you think about it you are incontinent. This always come to me when I am about to empty my half full bag and you see it hanging there with poo in it, and it really is a bag of poo. I utterley dread the day that I leak when out of my comfort zone as I always change my bag sitting up on my bed relaxed and in control. I have never ever changed it standing up and would really struggle as Tomas hangs down a bit ( sorry if too much info, but that is how it is for me ) and I can’t see below him, to be honest I just don’t want to do it standing up at all.

As you can see, it is redder on the right of the picture. this is where I leaked making my skin sore, but on the scale of soreness around a stoma, mine is pretty good. The circular bit is the indentation from the seal I use and you can also see where the bag sticks to the skin. I do have some scar tissue around the stoma where I had separation of the skin in the early days, and of course my abdominal scar where it all happened. It amuses me how they cut around the belly button when they do this operation.

I am now anxious to get to my appointment with the surgeon on the 16th of this month, to see what can be done with the leaky Barbie butt wound, such fun.

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 😉

 

 

 

 

Now there is work to do….

I have read some of my posts again and have decided it is time to tell you about the good things. I know the surgery sounded scary, and yes it was, but you know ? it is over and I am fine.

I like being different now, and I like telling my story. I feel empowered that I got through it and out the other end stronger,  and keen to let people know that the word STOMA isn’t a scary word, and having your bowel come out through your abdomen doesn’t stop you living and having fun. It does take time to recover, but you do recover.

Yes, I can eat most things, just a few things need a bit of care and chewing. Yes, I can have a drink or three of alcohol, as long as I make sure I drink water in-between, I have been just fine. I go on holiday with no real problems, maybe I need to change the bag a bit more often if I am hot, but it doesn’t melt and fall off. I get sore skin occasionally but I can sort it out. I don’t feel odd because I know lots of people of all ages have been through the same thing. There is a great support network that you must use to the max and this will help you to feel that you are not alone. There are many Facebook pages for ostomates, and lots of great websites which I have listed on my Tomas site.

If you are scared of the surgery, just remember that you will almost certainly feel better when you have recovered, than the reason you needed the surgery in the first place. They don’t perform this surgery lightly, so you will need it if you are having it.

Give yourself time to recover. If it’s only a few months and you still don’t feel yourself, give it longer. The surgery takes it out of you, mentally and physically so you need time to come to terms with it all, and again, use the support from hospitals, GPs and counselling. My surgeon said it is at least a year before you are near your normal self, longer for others. But you do recover, and stronger than ever. Yes, there are hiccups along the way, and I am not saying its easy, and there will be some unfortunate people that have a very tough time, but as a general rule, you can live a near normal life. There is more awareness now about ostomy surgery, and I am glad to be part of that awareness.

It helped me to decide to name my stoma, and I know a lot of others who have done the same, it helps to come to terms with the new normal, and you can treat it like a separate being who can be naughty / nice/ poorly, I also found it therapeutic to write down my thoughts via this blog, I also have counselling to help put things into perspective.

I am not saying things will be easy, they most certainly won’t be at first, but know that there is light at the end of that tunnel, and the pain and worry won’t last forever. I speak from big experience, because things that could have gone wrong, went wrong for me. My scar opened up and I needed it packing for 6 months, my rectal stump blew its stitches causing pelvic sepsis and I have a small fistula at the base of my stoma which causes poo to come out there as well as the spout, I was in hospital for nearly 3 months, but even despite all of that, a year on and I feel better that before. I do have off days and I allow myself that, but I try to do the things I did before with more pride, I enjoy things more because I know that I was so ill I might never have done those things ever again.

It is ok to be scared , it is ok to be angry, it is natural and inevitable but remember that your family and friends will also be going through some feelings of fear and anxiety. They will be scared for you, and want you to be better. I don’t think relatives have a lot of support . My husband was there for me every day but at the same time had to work and look after our family, all whilst seeing me in pain and discomfort. He would see me cry all the time, and he would need to be seen to be strong for me, but deep down he had his own fears. I never knew that my husband went home thinking that the ward thought he must be a horrible person because I would cry whenever I saw him. This of course wasn’t the case for my other patients or the staff but that is how he felt.

I want others to know my story so that they know what is normal and that everyone goes through the same sort of feelings. Good luck to everyone having surgery or those who have had it already, you will only hear the scary stories, but there are many stories not so scary in the end.

 

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.

 

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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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.