Awareness, Chronic Illness Blogs, Life With A Stoma, ostomy fashion

There Is More To Us Than Meets The Eye!

This is an incredible piece for Crohn’s and Colitis Awareness Week. Within the IBD community I wondered if anyone would like to show a selfie or photo of their stomach to represent the meaning of “there’s more to us than meets the eye.” You must be thinking “Alannah what on earth are you rambling on about?” Well, the reason I wanted and I am sharing this is to show non sufferers that just because a person who is suffering with an invisible illness looks “fine” on the outside, this isn’t the case on the inside. In fact, it is one of the biggest struggles IBD sufferers struggle with most. Our condition is not visible on the outside apart from past surgical scars, iron deficiencies causing discolouration under the eyes or the bloated stomachs we suffer (which people often mistaken women as pregnant, yes, it really does happen!)

The response I got was phenomenal! So many sufferers got in contact and shared their photo’s of their tummies, being such brave and inspirational warriors (if I do say so myself!) I want to share with non sufferers just how severe this condition can be, and so here is a little part about Inflammatory Bowel Disease: It is a life long illness that causes ulceration and inflammation of the digestive system, however both condition affects differently; Crohn’s Disease can affect anywhere from “gum to bum”, whereas Ulcerative Colitis only affects the large bowel and rectum. The awful symptoms that IBD patients suffer are: Diarrhoea, cramping and pain, fatigue, nausea and being sick, weight loss, mouth ulcers and anaemia. Where this doesn’t really sound like much in writing, in person it can be absolutely devastating to go through. There are also other things that come along side IBD such as fistulas which is an abnormal passage that grows between the bowel (or where the disease is present) to another organ in the body or to the surface of the skin. It can also cause eye inflammation, arthritis, constipation, slowing in healing, hair loss, dehydration, infections, bone thinning and mental health conditions.

Many people who suffer from IBD go through treatments to control the disease and the side affects of that can also be truly terrible, the biggest being infection. Those who have suffered infection can develop Sepsis which is infection going into the blood stream which can lead to a matter of life and death, resulting in having to have surgery for a stoma in cases where antibiotics don’t work. Many go through multiple types of medications that simply just don’t work and the condition doesn’t get any better where surgery is the only option left. Some people find that after having parts of their bowel removed or have a stoma formed that they regain their life again and can move on and live a “normal” life. There are also many just like me where that just doesn’t happen and we still are unwell and can develop the disease else where.

None the less, we all do our best to remain positive and stay in high spirit! I must remind you that we do have down days and that’s OK. Mental health is closely linked to IBD and it can be a serious challenge to deal with both. Anxiety and Depression are most common however other mental health conditions can arise too. It’s important than when you know someone with mental health conditions that even the happiest of people can suffer in silence, and so, it’s so important to help someone when you know something isn’t right. The best medicine for those who suffer is support, love and laughter (if you are an IBD sufferer then you know we wish this was an option!)

Now the best part of the blog! Are you ready?! I certainly am! The beautiful and brave people shared their photo’s to help raise awareness and little did I know whilst we were all sharing, it was also helping people gain confidence and acceptance with their scars, stoma bags and health conditions! That was the best part for me; helping those gain confidence again. One lady in particular thanked me for helping her do this and another had shared that in 13 years she had never shown her stomach to anyone until yesterday and also thanked me for giving her courage! To me this is extremely rewarding and being honest all the photo’s and responses has completely melted my heart and I am so glad and proud of helping other sufferers achieve something so great in life.

I hope you look forward to seeing the photo’s and those who took part enjoy them too!

For those who are struggling with self confidence, I hope that all of us who have shared our tummy selfies have helped you! Thankyou so much to all who took part! ūüíú

Awareness, Chronic Illness Blogs, Life With A Stoma

World Ostomy Day 2018

World Ostomy Day is a day of each year that is dedicated to Ostomates worldwide to help raise awareness about ostomies i.e Urostomies, Colostomies and Ileostomies. Also know as a stoma, the word¬†Stoma¬†is a Greek word meaning ‘mouth’ or ‘opening’ and it is estimated that over 13,500 people undergo Stoma¬†surgery each year!

It is a very important day to those with a Stoma because it is a great way of not only raising awareness but to share their journey on how they got a Stoma and life with an Ostomy. But what i really want to emphasise about Ostomie’s is the illnesses that may opportune someone to become an Ostomate. So what illnesses or factors may result in a person having a life changing operation for an Ostomy? Here are a number of them; Colorectal Cancer, Bladder Cancer, Ulcerative Colitis, Crohn’s Disease, Bowel Cancer, Chronic Constipation, Ehler Danlos Syndrome,¬†Familial Adenomatous Polyposis, Bowel Obstruction, Diverticulitis,¬†Fecal incontinence,¬†imperforated anus or other birth defects and other factors such as infection, injury and polyps.

As an Ostomate, it’s important to me to raise awareness but also to support others who have a Ostomy or people who are waiting to receive one. I am also lucky that i met my partner through having Crohn’s Disease and Ulcerative Colitis as he also suffers from Crohn’s Disease. Not only did I meet him but I also have made life long friends who i consider as family and have made my life awesome!

There are charities who support Ostomates such as A Bear Named Buttony who makes bears with a button as stoma to help children and adults after surgery (who gave me a bear after my surgery in 2015!), The Purple Wings Charity, Get Your Belly Out (also known as GYBO), The Purple Wings Charity, Crohns and Colitis UK and The Colostomy and Ileostomy Association. There is also a research charity called Cure Crohn’s Colitis who raise money purely into researching for a cure for IBD.

So how did i become and Ostomate? A long and painful journey cut short, i started suffering from bowel issues when i was 13 and after 4 years of going back and forth to the doctors with extreme pain, constant infections, vomiting, weight loss, numerous toilet trips a day, severe constipation, bleeding, rectal pain and tears, blood tests and rectal examinations and scopes, i was finally referred to have a Colonoscopy. I was diagnosed with Crohn’s Disease and Ulcerative colitis during the Colonscopy in August 2012 and this was then 100% confirmed when biopsy results returned from the laboratory. I was given a steroid course to start on the day of the Colonoscopy but unfortunately the disease was already too severe and i was admitted into hospital for the very first time. I was given IV steroids and started on treatments for IBD called Pentasa Granules and Azothioprine however i took an allergic reaction to both so i was then given Asacol. During that stay i was also diagnosed with a large bowel blockage after an X-Ray showed this, so i was given laxatives and during a flare you can imagine how much i was going to the toilet and the pain was immense and crippling. For years i tried numerous medications such as Methotrexate, Infliximab, Mecaptipurine, Oral Steroids, Suppositories, Humira and then other medicines to counter act the side affects such as antibiotics, nutritional drinks and supplements, iron supplements, vitamin supplements, dehydration sachets, Solidifying Agents for Excessive Diarrhoea, Anti Sickness, Pain relief, Menstrual Cycle issues and Heart and Migraine problems. At age 20 i was in hospital (2015) and had contracted a bacteria called Campylobacter whilst in a severe flare, both leading to completely rotting my large bowl which then led to me to develop Sepsis (blood poisoning.) I was rushed into emergency surgery within 2 days and was given an Ileostomy. A few months later (September 2015) i was rushed into theatre again after getting sepsis for the second time due to the Disease rotting my rectal stump. Two weeks after that surgery i was rushed into hospital with a severe infection in the wound where my rectal stump were and was put onto IV Antibiotics and took a reaction to them and almost died, that reaction was more horrific than having sepsis and surgery. All this combined lead me to be diagnosed with Anxiety, Depression, OCD and PTSD. I have also since then been diagnosed with Behcets Disease (a rare form of Vasculitis), a rare form of Crohn’s Disease, Sciatica,¬†Fibromyalgia,¬†Pernicious Anemia,¬†Hyper Mobility Syndrome,¬†Arthritis, Asthma and Nerve Damage, an Incisional Hernia, Adhesions, Chronic Sinusitis and a twist and narrowing in my Small Bowel.

Life now is still very hard as i suffer with these multiple illnesses with no cure and no medication i am able to take for pain from bowel complications. I’m waiting to have 4 wisdom teeth and my Tonsils removed due to having recurrent Tonsillitis. I love having my stoma and not having to sit on the toilet 70 times a day is great however the problems i have now sometimes seem just as bad as before i had surgery. I experience pain every single day, most tablets i cannot absorb so i take ones that melt and i am under investigation for other issues in my small bowel which is suspected as Small Bowel Crohn’s. I also get b12 injections every 3 months. I am waiting to see a dietitian for my weight loss as i currently weight 48kg. If the tests show Small Bowel Crohn’s Disease then i finally qualify for the last treatment i haven’t tried called Stelera.

So many people suffer from debilitating diseases and many do manage a much better if not normal quality of life after stoma surgery, however many donot. Many people who are chronically ill also suffer from family and friends being un-compassionate and don’t understand their condition therefore become ignorant and sometimes rude or nasty. I asked people about this and 90% said that their partner was very understanding of their condition(s) and with family 100% of people said their family members were not understanding. By raising awareness the aim is to help people gain knowledge of conditions in hope that they are able to support those who suffer. However we also have to remember that many donot want to gain knowledge and understand and would rather concentrate on their own life as illness doesn’t affect them then they think in the sense of why should they care? My own most recent experience is with a family member who got married and i had posted pictures of us together in her wedding dress and i was messaged about it that i should have known not to do that following a post a bridesmaid had posted on facebook, who i didn’t know, didn’t have as a friend and due to the fact that i was bed ridden for months from Chronic Sinusitis and not knowing that i was pregnant at the time. After explaining as to why i didn’t see this post the response i got was “it’s not all about you Alannah” which led me to tears. I couldn’t understand how explaining why i had no idea somehow made it all about me, and i still don’t. It still upsets me to this day that family could be so unsympathetic towards me and the illnesses that i suffer from. The reality is that no matter who we think highly of or love or care about, that some people just cannot sympathise or understand what we go through. So many people who suffer from illness loose friends who for example have been their friend since childhood.

I am so grateful for my illnesses giving me life long friends and an amazing partner! It has also given me great opportunities to take part in raising awareness for illnesses and it gave me the inspiration to start my blog and my instagram page and facebook page. Illness has taken so much from me including 4 babies and at times my own self but has given me purpose to help others who suffer and courage to be brave and fight, not many people can say they have been on their death bed 6 times and still live to tell the experience!

My message to those who are struggling, please give it time. Some days it feels like you don’t want to wait but it truly is worth it for some better days.

Happy World Ostomy Day and have fun in raising awareness!

Awareness, Chronic Illness Blogs, Life With A Stoma, People's Stories!, Personal Blogs

IBD- Do Blood Tests and Scans Confirm Flares?

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The problem we have (when i say we; i mean fellow sufferers and myself with IBD) is that we have blood test after blood test, CT scans, MRI scans and X-Rays but they aren’t accurate enough to show how bad the disease is and if we are flaring. For me, blood tests are my worst enemy.. why? Because they don’t show what is really going on. When i have an infection or a flare it’s beyond frustrating when you phone up for your results and they say ” you’re bloods are good so that’s very reassuring”, if i had a pound for every single time a health professional told me this i’d own a mansion with a swimming pool and my dogs would have their own little dog play house!! (i’m deadly serious ha ha.)

There is also some theory into why they show up with nothing or wrong. First of all with one blood test being done it needs to be accompanied by another to determine exactly if it is accurate or not and depending on them isn’t the best thing to do. I have read online that even though these tests have been around for a number of years, newer ones aren’t always coming back with the truth. It also states that some tests have a high rate of false positives, but what does that actually mean? It simply means that when the results come back pinpointing what the patient has, they actually don’t have it. In the article it states a specific test that was used to determine ovarian cancer known as CA-125 and due to the false positive numbers being so high and telling patients that they had ovarian cancer when they in fact didn’t, that specific test is no longer practiced. The next one is called a false negative, meaning that the person does not have whatever they are being tested for when they do have the condition. Many blood tests of the negative false are inaccuracy and can also be from sensitivity of certain equipment. Both tests come together in determining with the same factors of what they show up wrong; sensitivity and specificy.¬† For many doctors and specialists, this isn’t taken into consideration and automatically believe these results.

It’s important to ask for other tests besides bloods to be 100% on what it is that you are dealing with or to determine an accurate diagnosis. It’s also important to mention about the issues that can happen with false positives and false negatives. Especially when there are symptoms that aren’t going away or becoming worse. There has to be a wide perspective on the doctor and patients mind and meeting the right doctor who shares this with you. If you feel that your doctor does not, then request to see another. Many doctors are more trained or research certain things and conditions whereas others do not. It is extremely difficult to get a doctor to listen let alone an on call doctor on a ward who doesn’t know you or anything about you or the issues you face daily. They do their protocol of testing and send you home without thought when all results come back OK. Heck i think if i was an on call doctor i would find it SO tough to help patients who had tests that all came back fine! So it’s difficult on both sides but i do think that many simply just don’t care unless its life or death. Why should a patient be left and put home with no help because they aren’t dying? is that a fair life to live? what if the pain is so agonizing they are constantly vomiting¬† and unable to make it to the bathroom? The process of diagnosis is probably the hardest part about being ill, when you know something is up but nobody will do anything about it and it is placed onto a less serious problem such as IBS (Irretable Bowel Syndrome.)

Taking someone to an appointment with you i feel is super important because not only are they there to listen to the conversation, they are there to help fight your corner and get someone to listen. They can hold your hand and say its ok even though its not but it provides great comfort knowing you aren’t alone sitting there worried. When a doctor tells you nothing is wrong you expect them to be right but going through hell and back with many, that you stick by what you feel. It’s time to speak up and not back down, misdiagnosis can be serious and impact someones life severely. For example- when i developed sepsis, my CRP (inflammation levels) were at 4 which is better than normal. When i was opened up and my large bowel was removed, it was rotted and septic. Obviously this is just my experience so far, so i talked to a few people who also have the same issues to share with me their experience and what they face with these problems;

Natalie 1:¬†My IBD team always go off my bloods and they kept refusing to start me on proper treatment because my bloods kept coming back normal and that my inflammation levels were low even thought I kept telling them my symptoms. Eventually they listened to me because I kept complaining constantly that I wasn’t well and begged them to listen to me. I had a colonoscopy that proved I was flaring despite my bloods being normal but my symptoms also got worse.¬†¬†It’s so frustrating that they go off tests rather than how you actually feel. Makes you feel like you’re making it up.

Lorna: I was kept in and I ended up with an op. The reasoning why they didn’t believe I was flaring in the first place was that I’d just had an op… 4 months previously. Anyway it turned out I was flaring and i had 2 narrowings but weirdly the the issues was adhesions on the outside of my intestines.¬†I was in for about 3 months in total and was passing a lot of blood. This particular one was before my stoma. I’ve had a few times when bloods show nothing but stoma looks a mess… My gastro team now don’t take much notice of my bloods they listen to my symptoms and look at “external manifestations of disease” i.e the joint pains, mouth ulcers, hair loss, erythema nodosum, and what we can see on the stoma.

Andy: in 2014 I had a blood test done to start an Infliximab infusion by Derby Royal which came back and said I’d got Hepititis C. I had to have all my family tested, had meetings about Hep C treatment, had further blood tests, to discover that they had my bloods mixed with someone else. It was like being diagnosed with Crohns Disease all over again, trying to get my head around it. Lucky for me, it was a error on their part. It caused a lot of problems,  I was questioning everything and so was my now ex wife. I was thoroughly screened for infliximab again and came back fine. I just feel for the other person who got my results and  has Hep C! Fingers crossed they discovered it soonish. I had to have my wife tested and my two young children, obviously all came back clear, but was a big worry. I went to meetings and met the Hep C team at Derby and everything, it was something I will never forget.

Natalie 2:¬†I’ve been in the middle of a massive crohns flare and my crp has been 12. I’ve found some Drs only take bloods into account and some do take in the whole picture.¬†Dr Cole has always been great with me and looked at the whole picture but I know some don’t.

Yvette: I think in Crohns patients it’s extremely common to have a normal CRP level and yet still be flaring really badly. There’s plenty of gastro docs that go by that. Simply because it’s not unusual. I think a good gastro doctor who knows his/her patient well will take into consideration ALL the symptoms and tests available at the time including talking to the patient about their symptoms and then decide on a treatment plan.

Natalie 3: When I was admitted in 2015 my inflammatory markers were only at an 8 but my calprotectin was over 1660! Mine never show up in my bloods anymore, currently in an arthritis flare and last week my inflammatory markers were 2 lol! Even the nurse laughed as she had checked my joints and done a pain/swollen checklist.

Claire:¬†No matter how ill i feel or what symptoms i have, they’ll do my bloods and they always come back CRP < 5 and ESR normal. Doctors constantly said bloods were ok and they couldn’t use that as evidence based on symptoms of abdominal pain, diarrhea, vomiting, fatigue to get stronger medication. fecal cal proteins also came back normal. In the end they agreed to scope me, where they found inflammation in neo-terminal ileum.

Tiffany:¬†Mine always comes back normal….even when I am in a constant flare. I will have mouth and genital ulcers joint pain head aches eye pain and so on and they come back ok. It is so frustrating and then of course I start thinking it’s all in my head and I’m crazy. It was really hard to find a doctor that looked at my symptoms instead of the blood work.

Rah:  My crp is never up when im sick. Always normal.

Hannah:¬†I have been told I don’t have be√ßhets but have multiple autoimmune conditions, chronic pain syndrome and chronic fatigue. I also have crohns. My bloods are normally completely inaccurate as they have done bloods at the same time as a colonoscopy the bloods are fine and the biopsies taken and the blood pouring (tmi) show differently; my GI Dr says I’m a bloody miracle!

Ashley:¬†¬†I have had “normal” bloodwork multiple times when I am very very ill. Even during a flare, I don’t understand that and I never did.

Blondel:¬†My bloods always come back within normal range even before I was formally diagnosed with Crohn’s disease. Doctors wouldn’t believe anything was wrong because nothing showed up. They even told me my symptoms were in my head!!! This went on for 15 years until a colonoscopy showed the disease but when I moved hospital I had the same battle again. I was left without treatment until I got the fistula and first lot of sepsis where my organs started failing. I don’t trust blood results. It was pretty rough.

Jessica: My blood work came back fine & still does, even now that i’m diagnosed with Crohn’s and have been in an almost constant flare for almost two months!

Chris:¬†¬†As steroids were the only thing that seemed to help me I put this down to the increased cortisol they give you (rather than their anti inflammatory properties). Also my bowel starts off the day feeling fine then seems to give up towards the evening, when cortisol levels are usually lowest. I went for a cortisol blood test but I had to have it done at 9 am (when I felt fine). The results came back fine but in my eyes it isn’t a true reflection of the problem because they were taken when I felt well.

Chelsea:  My team always seem to treat the symptoms and patient not the lab results Рmy gp on the other hand seems to think I’m ok because my bloods are. My consultant put a mark on my records to go off calprotectin and scopes  after seeing my colonoscopy results plus calprotectin Рmy bloods are same as a healthy adult females would be Рbut I have severe ileocolitis.

Gemma:¬†My bloods are always normal no matter how sick I am. Makes things very difficult because drs don’t believe you need fluids or are really poorly. Mine always say bloods are normal. Until calprotectin comes back high. Now they’re saying they no longer think I have Crohns cos there’s ‘not enough evidence’.

Yvonna:  I had a tumour the size of a small baby removed from my abdomen in March last year. Blood tests done every 3 months but nothing flagged up.

Faith: My immunologist rang me to say that my bloods showed very high inflammatory markers and if i was ok. I told him for once i was actually feeling fine! Apparently they would expect figures that high with severe infections or flu!! I know its the other way round but just shows how messed up they can be.

Lin:¬†¬†Endlessly told over 18months my bloods were fine only thing showing was my vitamin d deficiency, my body had all the red flags, but as bloods were okay….. so was I….. no I’d had cancer all that time..¬†hope you can raise awareness bloods are not a clear guarantee of health!

Christopher:¬†For years I was told my blood tests/mri scans were normal, even though I had blood running out of my rear end and countless other issues. I was being told this was all in my head and I should seek counselling. Even my own family started believing I was making it up, despite losing loads of weight and being in agony all the time. The only person that truly believed me was my wife. I am not a big fan of MRI scans, when I had my stoma surgery in November my wonderful surgeon tracked my fistula from my rectum up all the way past my pelvis. This never showed up on any scans!¬†It was only down to my surgeon in 2013 that I finally got diagnosed, and that was by pure chance I met her, she took me on and did everything possible to find out what was wrong. I was relieved to find out I had crohns and then went and did the whole ‘told you so’ to my family and doubters. And by being relieved- I finally had a diagnosis and knew what was wrong with me.

Clare:¬†I was very ill and my bloods were not that great but gastro doc didn’t listen or care, my hubby took me to hospital and I had emergency colectomy.

Andy J;  My bloods never shown anything untill about 18 months ago when my body went black, my bloods showed something but with Crohn’s my bloods never change it. Gp not really but my IBD team do now, never used to. 

Wendy:¬†¬†Docs always say my bloods are okay when I am ill but they don’t tell you CRP is raised or that inflammation markers are high, sometimes they make you feel like a hypochondriac.

Just by talking to these people and reading what their experiences have been like and the physical and emotional affect that it has on them and their families, it’s clear to see that blood tests aren’t always as accurate as doctors like to believe. Sometimes we even believe that when they say all bloods are ok, that we simply must be and it’s in our heads. This isn’t the case and if you suffer from this PLEASE know that you are not alone and one day after fighting this that times will change in medical practices or training. It’s one of the most difficult fights a person has to face when suffering from an illness, whether they know what it is or not. But the real question is “where do i go from here?”. I might not have that answer but what i can advise is that you stick to what you believe and you don’t give up fighting for an answer! All it takes is for one doctor to believe in you and finding one that does feels like a prayer being answered. Finding that doctor can take months or years, many people even decades. I hope that one day this changes and by sharing this blog it can help and reach medical professionals. One of the main reasons why i wanted to do this blog was for someone to read it and think “this is me and has been for a while, i need answers and i need help” to then show a medical professional my blog- sharing peoples stories and experiences and to be taken seriously. Some doctors take a few times to listen but if you make it your mission to get them to listen then you are half way there!

If the false negative and false positive blood tests has an interest to you, click here. Or simply google it and there are lots of website that provide this information. 

Please share this blog and use it if you need to when seeing a doctor. Most importantly, keep fighting. 

Thank you to everyone who took part in this blog by sharing their stories and how i cannot emphasize enough how strong, brave, courageous and incredible people you all are.   

-Alannah.

Life With A Stoma, People's Stories!

What’s Your Story? Meet Joanne!

 

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My name is Joanne and i was diagnosed with Crohn’s Disease at fourteen, two days before i was to turn fifteen. From then i was tried on various medication to suppress my immune system to try and get my disease under control, this failed. At fifteen i had to get my large bowel removed and an ileostomy formed and of course my dad and i agreed we had to name it! So we gave my stoma his name ‘Whinnie the Pooh” so it had a positive joke towards it! (ha ha.) I was left what is called my rectal stump which is your rectum and it sewed inside at the part where your large bowel had originally joined it, in hope that in a few years time when the condition had settled that i could have a reversal (where you are reconnected from the small bowel to the top of the rectum.) By the age of 20, i had another operation to remove my rectal stump and sew me up (like a barbie!) due to my crohn’s affecting that part too.At this point i was in hospital for so long that i spent my 21st in there and I was close to death at one point too, and had to have several other operations done. Since then i have been OK but still suffering from time to time at home and recently just had a hospital admission as my the crohn’s has now spread to my pelvis and reproductive region. It has been decided that endure more surgery (hysterectomy) at some point to try and rectify this and make my symptoms less severe and also due to the damage that it has done.

 

¬†Many others suffer not only the same as i have but in cases many have died. I also don’t want anyone else to have suffered like i have due to this horrible disease!

Chronic Illness Blogs, Life With A Stoma, Personal Blogs

Surgery Number 2

As i lay here in bed typing this, i realise how lucky i am to be alive after all that has happened so recently!

I am in hospital (admitted just over a week ago!) and awaiting surgery to have my rectal stump removed. The Crohns Disease and Ulcerative Colitis is extremely active, so much so that it has caused a narrowing, complete ulceration all over the rectal skin and tissue, a few fistulas and an abcess! So as you can all imagine it’s been painful but i am so excited to have this surgery! Crohn’s Disease and Ulcerative Colitis or any form of IBD and serious illnesses can really bring out the best in us and the worst is only to show how strong we truly are! Never forget that fellow warriors! Will keep you all updated soon, untill then take care and lots of love and healing wishes to those in need! ūüíú

Chronic Illness Blogs, Life With A Stoma, Personal Blogs

Trying To Stay Positive

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This blog is from 2015 when I first started blogging. Reading back on it now it is almost hard to imagine that I coped through this.

I haven’t been on here in a while so I do apologize! I have been feeling really unwell lately and I spend most of my spare time on the sofa, on the toilet or doing the housework.. I can’t stand a messy house! The picture above is from my long month hospital stay before surgery.

Last week on Thursday the 8th of July 2015 I took a really bad turn of vomiting and I could not get off the toilet… the sensation was like peeing through my rectum and then looked to see it was blood and the smell was horrific. I was sweating so much when I wiped my stomach my hand was instantly soaked with sweat, yuck! Still almost a week later, I don’t feel any better and after that night my trust in health professionals has been really let down. I was rushed in by ambulance and then put into a and e walk-in reception/room where I waited four and a half hours then to be told to go home without seeing a consultant or surgeon and none of my consultants etc were told I was in and a note was left on the system stating I had been in and gone but not describing why or my problems, so now I will be writing a complaint.

Today the doctor came to my house after calling my GP and NHS 24. I couldn’t eat at all and struggled to drink, she took some bloods and I will find them out tomorrow which is when I see my surgeon and stoma nurse. Lola is doing really well and working very well, although this past few days she has been seriously active and it is worrying me slightly. I have a very sore open wound right under my stoma which burns as if it is on fire so have been very uncomfortable for a while. I managed to get my bedroom decorated so I can now sleep in my own bed and not on the sofa anymore, woohoo! I love to make home improvements, there is always room for improvement in many aspects.

Some days I can get really down and find it hard to process why I have Lola and how it even happened. I can become very depressed at times too. I also like to call my parents and other family members regularly and find this really helps more than anything. I still cry quite a lot but I think it is healthy rather than holding it in and exploding into a terrible state!

Life can be cruel, but working together we can try to make it a better place and help each other.

Goodnight and take care.

Alannah x