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Is ulcerative colitis contagious? 

I was googling something earlier and typed in ‘is ulcerative colitis’ and these were google’s suggestions of what I may be searching.  I was truly shocked at the first one.  Is Ulcerative Colitis contagious?

It saddened me to think that this is what people are thinking about people with IBD, that they are concerned that they could catch this from us.  It shows to me that although awareness is improving massively, that there is still a lot of work to do.

 

For the record, Ulcerative Colitis and Crohns Disease are NOT CONTAGIOUS, you can’t catch this from being near to someone who has these diseases.

“Ulcerative Colitis is a condition that causes inflammation and ulceration of the inner lining of the rectum and colon (the large bowel). In UC, tiny ulcers develop on the surface of the lining and these may bleed and produce pus.

The inflammation usually begins in the rectum and lower colon, but it may affect the entire colon. If UC only affects the rectum, it is called proctitis, while if it affects the whole colon it may be called total colitis or pancolitis.

It’s one of the two main forms of Inflammatory Bowel Disease (IBD). The other is Crohn’s Disease.

Ulcerative Colitis is a chronic condition. This means that it is ongoing and life-long, although you may have periods of good health (remission), as well as times when symptoms are more active (relapses or flare-ups).” – Crohns and Colitis UK

 

There is still a huge taboo around bowel disorders, people are embarrassed to talk about any disease or symptoms that are about poo.  This is something I fight against all the time and what formed my hashtag #StopPooBeingTaboo.

Yes, it can be embarrassing but I always think that poo is the great leveller, it is something that every single person on the planet does in one way or another.  I do it in a bag, but that shouldn’t be a reason for me to be ashamed.

Your poo is a wonderful indicator of health and should be something that you notice.  Changes in bowel habits, losing blood or mucus, loss of continence or drastic change in your poo can show that you have health issues.  Seeing blood and having diarrhoea can be a sign of cancer, but it can also be all manner of health problems from the very minor to something more worrying.  If you’ve had any of these things for a few weeks, you should absolutely see your GP.  A lot of us ignore these signs because of embarrassment, but your doctor has seen more butts than you can imagine and will not be freaked out, I promise you!

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The other suggestions from google were asking if UC is curable and deadly.  The answers are no and sometimes.  There is still no known cure, some people say that if you have the colon removed then you no longer can have Ulcerative Colitis and it is therefore a cure.  I don’t subscribe to this thinking at all as UC is an auto-immune disease and it has effects on the rest of the body too, from issues with the skin and eyes to fatigue.  I no longer have a colon, but I still class myself as having UC.

Is it deadly? Well, deadly is an emotive and strong word.  Do people die from problems occurring from UC or from issues with surgery, yes, absolutely.  I would probably word it as life threatening, it isn’t common, but there are risks to your life from medication, surgeries and symptoms.

It got me thinking about what other questions people may have about Ulcerative Colitis, ostomies or life with IBD.  I am always happy to answer any questions, though obviously I am not a doctor and can only give you my opinion.  If you are concerned about your own health, please do seek medical advice.

 

Sam xxx

What life with my chronic illness is really like 

Sometimes I worry what people think, I worry that they may think I’m overplaying my illness, faking it or being dramatic.  I worry that they will see me on Instagram laughing or out with friends and wonder how it is that I cancelled my plans the day before. 

I worry that people think I’m being lazy when I sleep in till 11am or making excuses when I don’t want to go out. And so I thought I’d try and explain how life is with MY chronic illness. 

Have you ever had a stomach bug or food poisoning? That feeling of crampy pain, constant diarrhoea and a concern you might not make it to the loo? Well that’s how I feel most days, for months and months now I have been going to the toilet 20+ times a day, I have accidents and to top it all off, my poo is so acidic that it’s burning open sores into the skin around my bum which bleeds and is very painful. 

I often go to the toilet 5 or 6 times through the night which means I’m thoroughly exhausted most of the time.   I have pouchitis which is an infection in my Jpouch so I feel unwell with temperatures, pain and generally being under the weather. 

My immune system is rubbish, IBD is an auto immune disease, meaning that my body is attacking itself.  Between this and years of meds that batter you down, I literally catch every single bug going.  This means I’ve had a cold and cough since October.

There are days when the fatigue and pain is too much to bear. When the painkillers don’t do anything and I just need to sleep.  I take anything from 4-16  immodium a day and codiene every day. The immodium gives me stomach ache as it attempts to slow the process of food through my system and the codiene make me fuzzy headed and sleepy. 

  
There are days when it all gets too much emotionally, I cry, I hide away, I wonder if it’s all worth it.  The never ending treatment and the feeling this could be for the rest of my life is soul destroying.  Times when I can’t find a silver lining and wish I could just be normal. 

Sometimes I simply pysch myself out, I worry so much about having an accident in public that I talk myself out of going anywhere, preferring the safety of my bedroom to the scary, judgmental outside world. 

When I do manage a day out, it comes with planning. No food the night before, codiene to help me sleep and lots of Imodium on the day to get through without shitting my pants.  It takes a mental strength to just get out of bed.  I pack supplies of meds, wipes, bags and spare underwear. 

So please try and understand, I know I sometimes appear flaky but it’s only because life is so damn hard right now. I try my hardest to lead a ‘normal’ life, to keep in touch and come to your events but sometimes it is all just too much and I apologise for this. 

Just remember how it felt when you had that food poisoning/tummy bug. Did you feel like partying, going shopping, going to work, going to someone else’s house? 

No? Well, please have patience with me. 
Sam X 

Poo pourri review

Who has seen the Poo Pourri campaign? I LOVE it, it’s a brilliant advert that after I fell on the floor howling, I wanted to try it straight away! Take a look…

With over 31MILLION views on YouTube, I’m not alone!

Here’s what they say.
“When you spray Poo~Pourri into the bowl before-you-go, our proprietary formula creates a protective barrier on the water’s surface. This barrier is designed to trap unpleasant bathroom odors beneath the surface and keep them out of the air. All you’ll smell is a refreshing bouquet of essential oils!”

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I can honestly say this product works!!! I thought my crazy explosive jpouch poos might be Poo Pourri’s nemesis but even for me, it works. The bathroom actually smells better when I leave!

I know it seems expensive, but it really lasts. I got my bottle for Christmas and I have barely used a quarter of a bottle and that’s with me going 8-10 times a day!

I take it out with me if I’m going to friends houses or out in public and it’s just an extra little safety blanket to know that I’m not going to feel embarrassed of the smell. This is super gross but because my digestive system is cut short, food isn’t broken down in the same way and so sometimes my poo smells a bit like vomit! (YUK!)

I love Poo Pourri and think they need to do an advert for people with IBD, ostomies and Jpouches!!! (If you need someone for that ad, I am IN Poo Pourri!!!!) I actually left a review for them, something I never do, as I am so behind this product.

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Smell can be a massive issue with people with IBD and a product like this can help a lot. I recommend this all the time and wholeheartedly think you should try it. They do a ‘stink free guarantee’ and if it doesn’t work, they’ll give you your money back!! How’s that for confidence!

Give it a try, you won’t regret it!

Sam

 

This review is not paid for by Poo Pourri or endorsed by them, it is a genuine review of a product that I love.  If you buy it through the links in this site (the amazon ones), I will earn a few pence for recommending it.  It will cost you no more but helps fund this site a teensy bit!

Thanks x

 

To the woman who tutted at me using the disabled toilets…

Dear lady who loudly tutted at me using the disabled loos,

I know you saw me running in, with my able bodied legs and all. You saw me opening the door with my two working arms. You saw me without a wheelchair. Without any visible sign of disability.

You tutted loudly as I rattled the handle with my hands that work perfectly and my able voice call to my kids that I’d be out in just a minute.

My lack of wheelchair may have suggested to you that I was some lazy cow who didn’t care. Some inconsiderate bitch who was using something I wasn’t entitled too. (I actually carry a card to explain that I’m entitled to and have a disability key if you’d have cared to ask). You may have seen my face blushing as I caught your eye and assumed I was showing guilt at blagging the disabled loos.

The fact is that I have no bowel. I have a pouch formed from my small intestine which can’t handle volume and so I have to go to the toilet and poo several times a day. My lack of large intestine means that my stool is totally liquid as I have no means of absorbing the fluids in food and so its really hard to hold it when I need to go.

I sometimes have accidents which means a large toilet that has a sink right by me means I can clean myself up when things go awry.

I hate having to use the disabled loos as I have to deal with people like you staring, nudging, tutting. And whenever I can, I use the ladies toilets. Just so you know, disabled loos usually smell bad and don’t seem to be cleaned as often or as well as the ladies and so I wouldn’t choose this option unless totally necessary.

Whilst I’m at it, I’d like to address the cleaner in the supermarket ladies toilets I used this week. As I ran in, knees together, bursting through the door and running to the cubicle, I’m sorry that the noise of my (lack of) bowels made you burst out laughing.

I can actually take the sniggering as since I had a pouch made from my small intestine because my disease ridden colon was removed during surgery, the noise I make when I defecate is hilariously loud. Seriously, I get it. It’s comedic in it’s volume.

But before you ran outside the loos and called to your friend “OH MY GOD! You should hear the noise in there!!! I wouldn’t go in if I was you!!!!” Perhaps you could have noted my daughter who was waiting outside with our trolley because her mum had had to leave her stranded to run to the toilet. Perhaps you could have stopped and heard me sobbing with pain because the acid in my stools has no way to be neutralised because I don’t have a large intestine and so opening my bowels actually burns my skin.

Perhaps you both could have shown a little empathy, a little compassion, a little understanding.

Poo is funny. Disability is confusing.

I get that.

But humanity and care for fellow human beings is a choice.

To everyone else reading this, the next time you see someone who doesn’t “look disabled” using a toilet.

Or someone bursting through and crashing into the toilets noisily.

Take a moment. Remember that not all people who have the right to use disabled toilets are in a wheelchair. Some of us have a jpouch, a lot of us have an Ostomy bag that needs emptying and changing with the use of space, a sink and a bin. And even more of us just don’t want to shit our pants in public.

Think about the nearly 300,000 people in this country who have inflammatory bowel disease (not to mention the huge number of people with IBS!!!) who need to use the toilet urgently, noisily, smellily…

It’s an embarrassing enough thing to deal with before having to see disapproving looks or hear your laughs and jeering remarks.

Be kind yo…

Peace out

Sam xxxxx

Fecal Transplant – Would you? Could you??

A fecal transplant, also known as Fecal Microbiota Transplantation (FMT), fecal bacteriotherapy, fecal transfusion, stool transplant, fecal enema, and human probiotic infusion (HPI), is a procedure where fecal bacteria is transplanted from a healthy individual (usually a partner or close relative) into a recipient to introduce healthy bacterial flora to a person’s gut.

Am I talking about eating someone’s poo??

Well, yes kind of! Transplants occur either through an enema straight into the back passage or through a nasogastric or nasoduodenal tube… The healthy stool is taken (after many health checks on the donor) and mixed with saline to create an infusion that is then given to the recipient.

“The aim of this procedure is to reestablish the normal composition of the gut flora, restore balance in metabolism, and stimulate both the acquired and the humoral immune responses in the intestinal mucosa after disruption of the normal flora” MARKUS D. AGITO, MD

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C.Diff (Clostridium difficile) is a type of bacterial infection that can affect the digestive system.  The symptoms can range from mild to severe and include: diarrhoea, high temperature and painful cramps.  It can also lead to life-threatening complications such as severe swelling of the bowel from a build-up of gas.  In cases of C.Diff, fecal transplants can cure the infection in just one treatment so you can see why some experts are calling for it to become the firstline treatment!!

It has also been hailed as a treatment for Ulcerative Colitis, with studies saying that multiple infusions of the poop soup could bring long term remission in IBD patients.  Fecal transplants for Ulcerative Colitis are still in the investigational stage, so panic not that your consultant is going to make you eat poo quite yet! I would be wary of any sites that profess the transplants as a ‘cure’ or the ones who offer tips on DIY fecal transplants… *shudder*

But as medical options are often looking back to more natural, traditional ways perhaps studies can proven that this works? The concept of treating fecal diseases with fecal matter originated in China a thousand years ago and called “Yellow Soup”, who knows what the future will hold for this, perhaps in years to come this will be the norm?

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At this moment in time, the thought of it makes me feel sick, but I do remember being so poorly, so ill in hospital that I would have done ANYTHING to feel better and so perhaps if it had been offered to me then, I would have taken the chance.  After all, the medication we pump ourselves with have a list of side effects longer than the colon they took away! Why not look at natural remedies?

The CCFA (Crohns and Colitis Foundation of America) says this:

“CCFA has adopted a position on FMT which states “Clostridium difficile infection can occasionally be very difficult to eliminate and usually requires the administration of more antibiotics.  In cases where antibiotic treatment fails, use of fecal microbial transplantation has been implemented… A more challenging question is whether fecal microbial transplantation can be a treatment for inflammatory bowel disease, in the absence of Clostridium difficile infection. It is known that the gastrointestinal microbiota of inflammatory bowel disease patients contains different bacteria from that of people without IBD or those with IBD in remission. These observations suggest that FMT may be a possible treatment for IBD.  There have been, however, no definitive, good quality research studies.   Only small case series have been reported suggesting that FMT may be beneficial for treatment of active IBD but there is concern that the results may have been biased by the low quality of the study methods utilized.  It should also be noted that unlike for C. difficile where a single treatment may be effective, in IBD patients, maintenance treatment with multiple coursed of FMT may need to be considered.  Therefore, treatment of Crohn’s disease or ulcerative colitis with FMT should be considered experimental and only performed as part of a properly designed and supervised research trial.”  

It is available on the NHS for treatment of recurrent C Diff, their website says it “is probably the best treatment currently available.”  With studies being done, if it is proven to work for IBD, this could become a normal treatment for people with Ulcerative Colitis!

So what do you think?? If you were offered this treatment that was safe, proven and a LOT cheaper for the NHS but is frankly, gross, would you?

Could you?

 

Love Sam x

Nearly doesn't mean anything at all!

Reason 3,459 that my husband is awesome.

Timm – “how was your evening?”

Me – “not great. I nearly crapped myself at the supermarket”

Timm – “Nearly?”

Me – “yeah, I was ok and got to the loo but I’m feeling pretty gutted and upset about it”

Timm – “Nearly doesn’t mean anything at all!! Nearly means you didn’t crap yourself. Hooray! You know you don’t get sent to prison for nearly robbing a bank! Nearly means nothing.”

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I do love that boy an awful lot.

Sam x

Butt Burn

Butt Burn… can you say those words without a little snigger?  I’m not talking about having a bit of a dodgy tum after a curry, I’m talking about the pain and discomfort that people with a j pouch suffer from.  Let me explain a bit more.

When you have had your large intestine removed, a pouch is formed from your small intestine and this is attached to your rectum. This means your digestive path is an awful lot shorter than usual and the acid from your stomach may not be fully neutralised by the time it reaches your bum. Your large intestine is also responsible for removing the water from the food we eat, without it, your poo becomes liquid rather than a solid poo. That combined with the smaller ‘storage’ space inside means that most people with a pouch go to the toilet multiple times a day.

The combination of these things can result in butt burn. A severe irritation of the skin around your bum that results in a painful burning sensation.

So what can you do about butt burn?

Well firstly many people recommend flushable, sensitive toddler wipes instead of toilet paper. The skin is very delicate and if you are going at least 5-6 times a day with a liquid poo, the amount of rubbing and wiping can further irritate the skin.

Some people use a bidet to wash themselves after a poo. For me this seems like too much of a faff. But when it’s been severe, I have gone and sat on the bidet for relief! I have also heard that some dry their bums off with a hair dryer. That’s not one I have tried but if it works for you, then go for it!

Barrier Creams are my weapon of choice. I was given the comfeel barrier cream by Coloplast when I left hospital but also use Metanium and Bepanthen which are two nappy rash creams that help. Metanium is very good, but it’s very yellow and I find it stains my skin and clothes a bit. Bepanthen is fab too, but I do find it a little too greasy. Which is why I end up using a combination!

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Controlling butt burn through diet is not as simple as you’d imagine. It is not a case of if you eat spicy food, you will get the burn. I can eat Indian food absolutely fine, but eating oranges is agony (I still eat them now and again though as I love them!) Certain foods can cause problems one time but be fine the next and so it’s important to not remove one food from your diet forever as it can be changeable.

Some people recommend eating a lot of carbs (bread, pasta etc) to bulk up the stool. The thinking behind this is that the thicker the stool, the less wiping and the less irritation.

“A sitz bath or hip bath is a bath in which a person sits in water up to the hips. It is used to relieve discomfort and pain in the lower part of the body. It works by keeping the affected area clean and increasing the flow of blood to it.

A sitz bath may be created simply by filling a bathtub with some water and sitting in it for a few minutes. Alternatively, a large basin can be used. There are also special devices that fit into toilet bowls. Sitz baths may either be warm or cool. Some people find alternating between hot and cold water soothing. Sitz baths may be filled with just water, or substances such as salt, baking soda or vinegar can be added.”

The above comes from Wikipedia I haven’t used a sitz bath or bowl, but a proper bath is always quite soothing and worth a try.

I suppose the biggest thing is to speak to your GP or consultant about your butt burn. It’s not something you should be embarrassed of, and they may be able to give you a solution. I hope my post has been a little helpful in your plight for a less burny bum hole.

I know things like this can sound like a joke, but the reality is that dealing with these things every day can becomes a source of anxiety and really affect both your spirit and day to day life. I write about these things to bring the subjects that us pouchees have to deal with to the table. I hope my post can make it a little easier to deal with.

Love Sam x

The Steel Giant and does a bad ass shit in the woods?

Today has been a big day for me in getting back to life, exercise and being outdoors. Since my j pouch operation I have had a few days out but today was the first real time I was out and about with no easy and quick toilet access and I was scared!

Physically I’m doing loads better but mentally I still struggle from time to time. I worry about having accidents, about not being able to live the life I want because of fear, I worry that I’m abnormal. But today had lifted my spirits and boosted my confidence!

I went for bike rides around Rother Valley Park today with my friend Caroline, Timm and all the kids. I only learnt how to ride a bike a few years ago so it was a bit nerve wracking but we had a fab time!!

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Then Timm, the kids and I went on a bit of an adventure, it was supposed to be a planned walk to see the Steel Giant but we were running late and missed the group. So we googled and found a ramblers walk and decided to go it alone.

Starting at Darnall train station I have to admit the start of the walk was not quite what I was expecting but as is the wonderful thing about Sheffield, within minutes we were in woodland.

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We then found The Steel Giant, a sculpture hidden away in the woods by the Sheffield Parkway.

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We had a great time exploring parts of the city we’d never seen before. Then the thing I was most frightened of happened. I was desperate for the loo… I couldn’t hold it and we were no where near any toilets. The question ‘does a bad ass shit in the woods?’ has been answered today…

You know what though? I had been stressing thinking this is the worst thing that could happen. That I’d be mortified and it would be the end of the world. Turns out it’s quite funny and now I’m telling you about it… I’m almost glad it happened as now I don’t feel stressed about it happening again. It happened, it wasn’t ideal, but I dealt with it and the world is still turning.

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I share these embarrassing things because unfortunately they are things us IBD folk have to face. But when shit happens (literally) you can either let it ruin your day or thank your lucky stars you have nappy sacks and baby wipes in your bag and laugh it off! I pick the latter…

I mean, look how pleased I am…

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So my lovely, beautiful, wonderful readers. Remember that when shit happens as long as you are a little prepared and can find your sense if humour, everything will be ok.

Much Love

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Sam xxx

Quick update – j pouch problems

A super quick update as I’m not up to blogging.

I’m having some problems with my pouch and so I’m going back to see my consultant tomorrow morning.

I can’t pass anything without a lot of pain, straining and basically feeling like I’m about to pass out.

Lots of pain in my belly and bottom and also passing what looks like coffee grounds which can be a sign of bleeding higher up.

I’m really exhausted and fed up but hoping that I’ll get some help tomorrow.

I’m feeling really sorry for myself right now. I’m regretting the operation and feel like my illness and recovery is just a massive burden to everyone. It all feels pretty sucky at the minute but I’m hoping that things will seem brighter soon.

Sam xx