Tag: ulcerative colits

Posted on

#CrohnsAndColitisAwarenessWeek2022

 

THIS PHOTO WAS TAKEN JUST BEFORE I WS TAKEN DOWN TO SURGERY 7 YEARS AGO.

Crohns & Colitis awareness week has always been a week full of awareness on social media. I think it is so important to talk about it, as anyone with bowel issues will understand. Poo and all things related to poo hasn’t always been talked about until recently. When I was first diagnosed over 30 years ago it was a very different story.

I didn’t have a clue what was happening to my body. I was a teenager enjoying life when all of a sudden ( yes it was that quick ) I found myself in hospital with a young doctor snapping on his rubber gloves with a wink to my friend.

I was terrified because I was being sick out of one end and what felt like losing my ‘innerds’ out the other. Pain, embarrassment and bewilderment followed, with lots of scary tests and needles. The threat of a nasogastric tube if I didn’t stop being sick ( I refused point blank). I didn’t have a clue at the time how on earth it could stop me being sick.

A very young male nurse coming to my call for help when I had soiled myself in the toilet, that was awful for a young female girl.

After many weeks in and out of hospital being pumped full of steroids,I was told I had inflammatory bowel disease. They didn’t know for sure if it was Crohns or colitis but at that stage the treatment was the same. After a clinic appointment I saw a leaflet by Crohns & Colitis UK, this would be my source of information in those early weeks. So for the next 30 years and many other hospital visits, I had indeterminate colitis, Crohns colitis, ulcerative colitis and or Crohns, it was never decided on which one I had. I don’t have any photos of when I was poorly back then, the camera wasn’t invented in those days ; )

Fast forward to 7 years ago and that was when Tomas the stoma joined my story. No need for me to go into those awful times, as this blog covers all of that, but I want to raise awareness of this awful disease, because there are a lot of people out there suffering in silence. If you know someone with IBD then please check in with them, their life has been changed irreparably and they may not think talking about their fears, or their bowels to friends and family is ok, but it should be ok.

Crohns & colitis UK

 

Posted on

The never ending story

 

 

December

Recovery is very slow at the moment because my wound from the IGAM flap surgery is still healing. I have had two patches that have opened up and the second one is still being dressed daily. I have been told to stay off my bottom as much as possible to give it chance to close up.

Things are very tough and mentally draining. The constant leaking from my other orifice is probably on balance the worst of the two evils because I don’t have an answer yet as to why I am still leaking there. No one is keen to take a look yet so I will still be like this for a few more weeks until I eventually get an appointment through to see my colorectal surgeon, then of course there will be more of a wait for tests, then more of a wait to get back for the result, ( been there too many times to be optimistic ).

I am prone to random bouts of tears, suppose this is normal after a large surgery when things haven’t healed as quickly as expected but I am sure I will be right again soon.

My buttock / thigh scar is still looking ok although I have large patches that are still numb and may well stay numb but also quite painful at times like someone has booted me up the backside . I do find that I can’t sit for long anyway before it gets uncomfortable ( and it increases the leaking ). As the swelling has gone down I can now see and feel where the muscle was taken from that area, it feels very strange and from the side I am sure my buttock looks square.

I have no idea whether the leaking ( with blood sometimes , and not just a bit) is serious or means things haven’t worked, but finding it difficult to get hold of the right people to ask it a huge task.

I have decide to reduce my hours at work which I know is the right thing to do, at the moment I am on reduced hours until I feel up to normal life. I had to go back to work as I was getting brain mush from crap daytime TV.

Looking forward to a few festive days with my family, and I hope all my followers and readers had a fabulous healthy happy Christmas and New year.

January

Leaking has calmed down a lot and my bottom feels fine, so feeling that bit better about it all, long may it last. Still feels weird down there though so will see over the coming months if things are genuinely on the mend.

 

Posted on

Crohns or colitis ? ( plus a bit about the IA information day)

Sorry I haven’t posted in a while, busy busy busy. I am also excited about a thing I was involved with to do with stomas, but it is still hush hush at the moment so I can’t tell you yet. Watch this space !!

I went to the National ileostomy and internal pouch association information day the other week in Birmingham, and it was a great day out. I met many people who I only ” know ” from social media so to meet them in person was so nice. It was based around  Living well with a stoma or internal pouch and it was very informative. We got to have a great taster session about exercise with Sarah Russell called Move without fear, which was great for me personally as I have a fear of exercise for my abdomen. She is a massive inspiration having achieved so much since having her own surgery.

I missed hearing a talk given by Natalie Gardner ( aka @thespooniemummy) with the young IA peeps which I am sorry about because I now wished I had been there, as it was about body image which is a topic that can mean a lot to people with a stoma, particularly the younger generation.

We also had a mindful session which gave us techniques on how to slow down and relax which I found useful. ( Although me and Sue did a bit of giggling 🙂  )

The talk I was very interested in was called ” Should it be called Crohns” but alas as is usual for me, it wasn’t at all about the subject I had thought it might be about. I might just add though that it was a very good talk and very interesting, so I am glad I attended. I really thought that it might be about the question mark over indeterminate colitis/ Crohns colitis. I thought maybe he was going to discuss whether Crohns and colitis were actually variants of the same disease, as I have often wondered. Yes they are both IBD, but many folk have been told one then changed many years later to the other. Some say they have been told they have both, is that possible? is it just the same disease showing in a different way? ( The talk was actually about who really discovered Crohns disease.)

Many years ago when I was first diagnosed, I was told I had Crohns disease and that diagnosis stayed for about 10 years. I even had a biopsy that showed Crohns of the large and small bowel. Those notes are now so old I don’t think I can get hold of them, it was also in a hospital in Surrey. Move forward years and I was then told I had indeterminate colitis ( unsure which IBD I have) or Crohns colitis ( Crohns of the large bowel). Then it was decided I had ulcerative colitis.

I have always had a few doubts about which one, even now without the large bowel. The histology said severe UC but there were some bits that could be Crohns related, like thickening of the bowel wall. I also had severe swollen skin tags before surgery which is more Crohns like, and mouth ulcers.

Now, things again seem strange for me once again. The perineal sinus tract that I have had for a few years and have had a few surgeries on, has now been proved to be a rectovaginal fistula. Fistulas can happen with UC but again are more likely to be Crohns disease. I also have the fistula at the base of the stoma ( which is part of my small bowel.) Hopefully nothing else will appear within the small bowel to suggest I am not clear of IBD.

 

  • FISTULA – an abnormal or surgically made passage between a hollow or tubular organ and the body surface, or between two hollow or tubular organs. So could be linking any internal organ or skin together.

This is why it would be great to get the conversation going about the subject of one IBD or two? who else has the question mark over their diagnosis? I hope and think that I had UC with some tendencies of Crohns in the colon that has now been removed.

Posted on

How my ulcerative colitis started

I remember always having some sickness and bowel issues as a child. I would often be very very constipated and be sitting on the toilet for hours until I had seat marks embedded into my legs. I also had sickness bouts every few months, they would come on for a few hours and then I would be right as rain again.

Thinking back, this could have had something to do with the diagnosis of IBD (inflammatory bowel disease) many years later.

I am also very sure that a stressful situation started my first proper flare. I was going to see my sister in London the next day, but stupidly went out the night before with my purse in my handbag, in the purse was just over a hundred pounds and my train tickets, bank cards , photos and other special things.

I went to the busy bar to get a drink with my two friends and when I went to get my purse out it had gone and my bag was wide open. A wave of mixed emotions followed. I was so upset and angry and just didn’t know what to do. We went outside and there were some policemen who helped me to call the bank and cancel my card, they said I was the fourth person that hour.

I went home upset all night and my dad sorted out more train tickets ( we did eventually get the money back from them for the original ones) and I still went to London. I started to feel generally not myself, I got loose stools and when I looked in the mirror I thought my eyes looked sunken and dark.

I got home a few days later and things deteriorated from there. I started to be sick , I had an awful pain where my appendix was and I was struggling to make it in time to the toilet. The doctor came out and said he thought I had appendicitis and needed to go to hospital.  ( This is not uncommon , it can mimic appendicitis) I had never ever been in hospital let alone had any surgery so was petrified. I got there and the doctor examined me. He said because of the diarrhoea he didn’t think it was my appendix and they would do a few tests and I would be admitted. The sickness, pain and diarrhoea were terrible and I thought I was dying. It was taking a while for a diagnosis and I had to have many tests. I was bleeding a lot too which was scary and I just thought ” I have cancer”. I was on a drip and often needed the toilet urgently which would cause accidents as I couldn’t get there quickly enough with the stand and drip in tow. It felt degrading and humiliating, although no nurse ever minded, I minded, I was a young woman who shouldn’t be soiling herself and need looking after.

I was put on intravenous steroids and fluids and couldn’t eat with the sickness. I was advised I might need a naso gastric tube to stop me being sick and I refused I was so scared. I was started on Olsalazine but remember at the time I wasn’t advised that I should be taking it indefinitely, so when those were finished I didnt’ get anymore and became ill again.

I started to respond to the meds and they also told me I have IBD but they were not sure if it was Crohns disease or ulcerative colitis. ( They never really knew at all because they called it indeterminate colitis after that as it could be Crohns disease even now ) I spent some years in and out of hospital with this awful disease, with many people not understanding how severely ill you can be with it. Many think that IBS is similar but I can safely say they are nothing alike. When I am in remission I have IBS so that will tell you something about it. IBD can kill you as I nearly found out last year. I am in no way saying IBS isn’t horrible, but it is not IBD.

My life was not how I imagined it should be, the illness was ruining my life, I was having flares at times when I should be well, for example when I was about to have my babies I would flare, and those flares lasted for a good few weeks after the birth. Most christmas’ were the same and I remember missing one Christmas day with my family and being stuck in bed. I was in hospital when my children were very small which was awful. Going for meals would sometimes end with me going home early because I would feel unwell.

I do think that although the surgery for me and my family was very traumatic, I can go out and enjoy my life now more than I ever could before. I have my off days but if I really think about it, it is nothing compared to the off days with an UC flare.

 

Posted on

Colonoscopies

 

Colonoscopies can be performed for a variety of reasons but I will give you my take on them. I have had numerous with and without sedation.
The fear is greater than the actual procedure. There always will be exceptions to that rule but in general I find the whole thing not nearly as bad as I anticipated. The worst bit by far is the preparation.

You will be given some form of bowel preparation which is often a salty awful tasting mixture that you need to drink over a period of time, and because you can’t eat ,it is very nausea inducing I am afraid. But you just have to get on with it. After so long you need to start going to the toilet.
DO NOT PLAN ON GOING ANYWHERE as you will almost certainly need to go lots of times to clear your bowel out. Because of the timing of the prep you will be able to sleep, and in the morning you will need to drink one more sachet usually. You should be fairly clear after a while but the urges may still be there. As long as you have done as they asked you are ready. ( things may vary depending on when you are booked in, either morning or afternoon).
When you arrive at the endoscopy unit you will be taken to see the nurse before hand to talk about sedation and consent etc..you will be asked to get into a gown and you usually have to wait a short while for your slot, this is the time that most folk are nervous about the unknown, please don’t be, it is ok.
Next, you will taken into the procedure room where you will see a bed, a monitor and various other machines and items. Your doctor will there ready fro you , as will a nurse or two. One of the nurses will get you comfortable and look after you the whole time.If you asked for sedation this will be given now, you will have a cannula placed in your hand or arm and the sedation will be given.

The nurse will give you an oxygen nasal cannula or similar which is just a small foam piece attached to oxygen that you place in one nostril. You may get a different type but essentially they will be the same idea.
Once the sedation starts working you will feel very relaxed and may not remember too much, you are still awake and may even watch the monitor if you are not too squeamish. You will be on your side with your knees up and they will then insert the camera. Lubricant will be used to help it in and you should feel fairly comfortable.
The doctors ( as there may be two) will guide the scope around the bowel and may ask you to move into a different position now and again.

If they take biopsies you will not feel this. Sometimes you make be asleep and sometimes you may wake a bit. I do find some pain when they are moving the scope around the bowel corners, as they tend to use your tummy to help push it around, but in all honesty it is soon forgotten.
Eventually it is over and you are wheeled into the recovery bay where they will let you sleep off the sedation. You then get a cup of tea and biscuits and are on your way. You won’t be allowed to drive after sedation. If you are lucky you will be given a copy there and then of the report.
Good luck and don’t be scared, it’s a breeze. You have probably been through far worse with what has got you there in the first place.

By continuing to use the site, you agree to the use of cookies. more information

The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.

Close