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Purple Bag Syndrome and How it Can Affect Urostomy Appliances

Purple Bag Syndrome and How it Can Affect Urostomy Appliances

Wow, this is the 4th segment of the #UnderstandingUrostomy series every Friday and they have seemed to be quite a hit!

So this post is all about Purple Bag Syndrome......

If you have a Urostomy or have had a urethral/supra-pubic catheter you may have seen this on the groups or forums. Yes, this is really a thing!!!

What is Purple Bag Syndrome?

                      Purple Bag Syndrome                     Purple Bag Syndrome 2

Purple Bag Syndrome also called Purple Urine Bag Syndrome (PUBS) is very RARE and quite alarming if you have never seen it before. It occurs when a Urostomy pouch, night drainage system or urinary catheter appear purple in colour.

PUBS was recognised as a condition and was then published in 1978 in a medical context. Some academics would argue that it was first reported as an observation in 1812 when physicians taking care of King George III noted a bluish discolouration in his urinary catheter bag!

Even though there have been many scientific studies and individual case studies on this phenomenon the exact reason for this are still disputable. There are a few possible theories which I will explain later in this post. The studies all involve long-term catheterised patients however I have seen in groups and forums that PUBS can occur in Urostomates. They state they have seen purple discolouration in their pouches and night drainage systems.

Why does this occur?

Again there are a few theories so I will try to cover them.

  1. High-level tryptophan (amino acid needed in our diet) is present in the gut for longer due to constipation, bowel immobility or slow transit could contribute to PUBS
  2. Alkaline Urine helps breaks down the indoxyl into Indirubin and indigo. These pigments dissolve into the plastic of urostomy pouch, night bag or catheter devices then appears purple.
  3. It has been reported that it is more common in females especially if they are older and bedridden. However, I know a few Urostomates who do not fit into this category and have had PUBS.
  4. Most results from urinalysis shows the presence of bacteria.  It is this bacteria that produces enzymes which break down to form the pigments. Some people may find after a course of antibiotics the PUBS may stop but this doesn’t occur in every case. Most people with PUBS that have bacteria present are asymptomatic. Therefore there is a big discussion whether these people are given antibiotics because they do not have any symptoms.
  5. Another theory that is a bit out there is a bit historical. Going back to King George III’s blue/purple urine in 1812 researchers have found his medical records show that he was given a medicine based on the plant Gentian. This plant has deep blue flowers and is still used today in some tonics and maybe this plant could also be a contributory factor but not all scientists agree.

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So chemically how does this happen?

Ok so bare with me as I try to describe chemically how this can happen with the aid of this diagram!

Purple bag syndrome 4

  • Tryptophan is an amino acid found in the diet and is essential to humans. It is broken down by the enzyme Tryptophase in the GI Tract
  • This produces Indole and is absorbed into the blood by the intestines and passes to the liver.
  • In the liver, it is converted to Indoxyl Sulfate which is excreted in urine. If everything was normal indoxyl sulphate might stay as it is and make its way out of the body in the urine.
  • As mentioned for PUBS to occur there is a debate that an infection may be present although usually asymptomatic. Bacteria is present that produce the enzyme sulphatase and phosphatase that shear the indoxyl of its sulphate leaving indoxyl.
  • If the urine is alkaline (pH greater than 7) the indoxyl breaks down into Indirubin and indigo. These pigments dissolve into the plastic of the urostomy/ catheter bags or drainage device to combine and make a purple colour.

Purple Bowel Syndrome 3

How to Manage PUBS if you have it?

  • Talk to your GP and ask about taking vitamin C to get your urine less alkaline. Please see this post for more advice on achieving acidic urine.
  • Make sure you are eating enough fibre and are not constipated.
  • Clean your night drainage bags and other devices thoroughly the more bacteria that is present the more likely PUBS could develop.
  • Make sure you are hydrated by drinking about 2 litres a day. This also helps prevent infections and alkaline urine. Increase your fluid intake in hot weather and situations where you are exerting yourself such as exercising.
  • Maintain good hygiene when changing appliances.

Conclusion

While purple urine bag syndrome may seem harmless it can be quite alarming. As mentioned the exact cause is still not known and there seems to be many factors that can contribute.

It is important your GP is aware so some tests can be carried out. Some people have a course of antibiotics and the colour goes away but some people may have it for years and does not go away.

If anybody has experienced this please let me know I would love to hear from you.

Urinary Crystals with a Urostomy

Urinary Crystals with a Urostomy

Carrying on from last weeks post on Urinary pH levels I have decided to write about urinary crystals for the 3rd instalment of #UnderstandingUrostomies series.

What are Urinary Crystals

Urinary crystals are usually associated with alkaline urine and are a build up of crystals around the urinary stoma or skin. This is one of the most difficult skin care problems for people with a Urostomy and can lead to your stoma becoming irritated and can cause bleeding.

Urine secretes a certain amount of salt but whether the urine is acidic or alkaline determines how much salt is deposited. Alkaline based urine secretes more salt than an acid-based urine. 

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Urostomy and Urinary pH

Urostomy and Urinary pH

Welcome to my second segment of #UnderstandingUrostomies Series.

Today I am talking about what your ideal pH urinary level should be with a Urostomy, how we can achieve this and why it is important!

Urine pH balance

This is a measure of how acidic (pH 1-6), neutral (pH 7) or alkaline (pH8-14) your urine is.

When the food you eat is burned in the body it produces mineral residue called ‘ash’. This can be acidic or alkaline depending on what food is digested and whether it contains mostly acidic or alkaline ions. Most fruit and vegetables actually give off an alkaline ash and tend to make the urine more alkaline. Foods that present a more acidic ash are meat, cereals, fish, and eggs and the urine will be more acidic. 

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Urology Awareness Month

Urology Awareness Month

So September is Urology Awareness Month! Can I give a shout out to my Show Girls who actually told me about this because (hand on face) I didn’t realise it was this month!

What is Urology Awareness Month?

This is a month that is dedicated to raise awareness of Urological Disease and face the stigma that is sometimes associated with urological conditions. It is to encourage people to actively take care of their urology health, raising awareness of conditions, symptoms, and treatments.

The Urology Foundation has organized this event and plans to shine a spotlight on urology conditions. These include prostate cancer, kidney damage, incontinence, bladder cancer, testicular cancer, Kidney stones, interstitial Cystitis and Urinary Tract Infections.

It is estimated that 1 in 2 of us will be affected by a urology condition in our lifetime. They are becoming more prevalent and devastating the lives of millions of men, women, and children in the UK.

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Urostomy and Diet?

Urostomy and Diet?

Welcome to the FIRST of my series #UnderstandingUrostomies which will be every Friday. This series should help educate ALL ostomates about Urostomies and some very unique issues we may have. Please get in touch with me if there is anything specific you would like me to cover. I am having a few problems with my blog atm and my old post about Urostomies and Urinary Diversions is not showing but when this is sorted please check it out if you do not know what a Urostomy is.

Many of you reading this may have an Ileostomy or a Colostomy and are already aware that after surgery you are given information and leaflets to follow a low fibre diet plus a long list of foods you cannot eat for the first couple of months. However, in the long term eventually, you can technically eat whatever you want WITHIN REASON. Listen to your body try foods and find out what you can eat that doesn’t cause a blockage or pain. We are all different for example mushrooms are ok for me as long as I chew well but I cannot eat stilton cheese because it makes me really poorly. 

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The Purple Wings Charity and My Surprise Grant #flutterflutter

The Purple Wings Charity and My Surprise Grant #flutterflutter

In life, some people enter our lives for a reason and can be a catalyst to a new ‘you’ either directly or indirectly. Lauren Henderson the founder of the Purple Wings Charity was definitely one of these people...

I could go back further and say without starting my blog I would not have all these amazing ostomates in my life and be part of a community that I did not know existed 5 years previously with a stoma. This year it seems the universe has been on my side and people have entered my life one after the other and amazing opportunities have arisen. I cannot mention Lauren without mentioning "The IBD and Ostomy Support Show"  another amazing opportunity that came my way where we talk about topics regarding having an ostomy. Every Thursday at 8pm UK time I do the show with the amazing girls and the lovely Steve. I first met Lauren as a guest host on the show and was blown away how down to earth she was and very passionate about wanting to help fellow ostomates. It's amazing that Lauren has achieved her dreams and took the chance to start a charity while working pretty much full time... 

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Swimming and a Spa with a Stoma

Swimming and a Spa with a Stoma

I used to love swimming as a child and I was a full on water baby. Taking part in swimming galas (my stroke was breaststroke) and life-saving clubs.

I always felt my true self and at one in the water. Any hard times in my life or stress with exams, I found myself in the pool...swimming. It was the instant stress buster. I felt happy and peaceful in the water and in my true element. Now I have been drawn back to the water and back to the swimming and spas. 

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My Review of Pelican Platinum UROSTOMY Convex Pouch

My Review of Pelican Platinum UROSTOMY Convex Pouch

Week 3 of #everyhingstomas  and #bagroulette. This week I have been sampling the Pelican Platinum Urostomy Pouch for 7 days I used 2 pouches and the Pelican 1.5 litre night bag at night.

Initially, I was given Ileostomy pouches after requesting urostomy pouches but I called Pelican customer services and they were very apologetic and sent me out the Urostomy Convex pouches the next day.

I received 2 types of this pouch. One with the tap and one with the bung.

I received 2 types of this Pelican Platinum Urostomy Convex Pouch. One with the tap and one with the bung.

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My Review of the Salts Confidence Convex Urostomy Pouch

My Review of the Salts Confidence Convex Urostomy Pouch

Part of this month’s challenge for July on “The IBD and Ostomy Support Show” we are reviewing different manufacturer pouches. Last week I reviewed CliniMed Welland Aura Convex Urostomy pouch and night bag which I really liked apart from the 2nd day my skin feeling a bit itchy I would definitely recommend this product.

So this week I will be reviewing:

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My Infertility

My Infertility

This has been a long time coming and it's not easy to write about. Like my rare illness and subsequent Ostomies have been a journey of acceptance so has my infertility! I want this to be an honest and open account of how it has affected me and at times how dark it got!

 However, now the universe has put Laurence and Molly, his beautiful 10-year-old daughter, into my path words cannot begin to describe how much she has enriched my life. I truly love this girl and it is pretty amazing that she entered my life when I was struggling with my infertility.

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My Review of Welland Aura Urostomy Pouch and Welland Night Bag

My Review of Welland Aura Urostomy Pouch and Welland Night Bag

In my previous blog posts last week I explained ‘How to order Ostomy samples and ordered a few samples from a few Companies.

For the first week of July, part of “The IBD and Ostomy Support Show” #bagroulette I am trying out samples for my Urostomy.

Within 3 days I received samples from Securicare. I have heard great things regarding their Urostomy pouches and I received the following:

  • Welland Aura Convex Urostomy Sample Maxi Beige pouches     
  • Welland Night Drainage Bag with Easiflo

Also, I was very grateful that they sent me a sample of their Welland night bag. I was concerned if an adapter would be included with the pouches. I was really happy that they must have thought this through and sent out a brand new try Night Bag to try.

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Why People have Urinary Diversions (Results from a Poll)

 Why People have Urinary Diversions (Results from a Poll)

As part of “The IBD and Ostomy Support Show” last Thursday, we covered some of the reasons ‘Why some people may have ostomies.’ Stephie (aka colitistoostomy) put a poll out across a group she admins and the results were surprising. Personally, I thought it was amazing because sometimes I used to feel a bit alone and left out due to my stomas not being formed because of Cancer or IBD (Even though I now have IBD because of the IIeostomy). It was good for me to see other Ostomates that have similar complex Neurological Conditions that have left them with an Ostomy. So this got me thinking and I decided to roll the poll in the Urostomy Awareness Group to see ‘Why People have Urinary Diversions’

To start with I will explain the different types of Urinary Diversion which can be confusing and the reasons why people end up with them. Then I will discuss the results of the polls and why I found them really interesting! 

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Review on How to Order Ostomy Samples

Review on How to Order Ostomy Samples

I am writing this post as part of our theme for the month of July! On “The IBD and Ostomy Support Show” the girls who all have an Ileostomy are taking part in ‘Bag Roulette’ where they send samples of their bags to each other. Unfortunately, I cannot take part due to my Ileostomy prolapse. After trialling many bags and having many leaks I have found the one for me and I do not think it would be a fair review.

So instead, I have ordered 3 pouch samples for my UROSTOMY from 3 different companies. In this post, I will talk about: how to order samples and the positives and negatives I have encountered during the process of requesting samples ONLINE. At the end, I have included a list of stoma companies based in the UK with their address, website and phone number. 

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Self-affirmations for Chronic Illness

Self-affirmations for Chronic Illness

I wrote a Facebook post last week about the ‘affirmations’ I am practicing at the moment to help me get through a tough time. I just would like to say a thank you Stephie at colitistoostomy for persuading me to write a proper post about what affirmations are, the science behind them and how they can help people with chronic illness.

Many of you may know that I have done a lot of self-development on myself in the last 2 years and in October I will be having specialist councilling to push that development further. Two years ago my life got very painful. Not accepting the bags I became very bitter about my diagnosis, prognosis and I just exuded self pity. I am so far removed from that person today and I truly believe that self-affirmations have helped me get over that barrier. I have found some gratitude for my illness, stoma bags and I can truly see what a miracle it is that I am still here, fighting and seeing the magic in the world being unleashed. I do not deny that at times my health is not great but I do not ponder on it and try to embrace life...one day at a time...

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Urostomy Awareness Campaign

Urostomy Awareness Campaign

Many of you may be aware of a campaign that was launched last week featuring a poster with 24 AMAZINGLY BRAVE men and women who were ROCKING their Urostomy Bags! First off I want to give a huge thank you to everybody who got involved with the poster. For some people, this was their FIRST ever picture with their bag out!

On the whole, we have experienced an amazing level of support from stoma buddies, top stoma companies, Urology and Colorectal Consultants,  Stoma Nurses, Urology newsletters and some Urology journals.  On Monday I have an interview with Bournemouth Echo which is amazing we may be able to get it into the public stream and maybe into the national press!

We are BEAUTIFUL,

We are BRAVE,

We are WARRIORS and most of all

We are SURVIVOURS!!!!!!!!! 

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National Carers Week 12-18th June

National Carers Week 12-18th June

I am currently in Bournemouth hospital due to another kidney infection and stricture. Currently waiting for a catheter to be put into Squirt (Urostomy)

While I was waiting I decided to go for a wonder downstairs and walked past a few stands in the main entrance of different organisation and charities for carers and advocacy.

I didn’t realise that this week is NATIONAL CARERS WEEK 12-18th June

I started talking to a lovely lady called Sam who was From Dorset Advocacy about carers week. She explained a bit more to me! 

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Bathing with an Ostomy

I have been quite shocked recently by the nurses in my hospital on the urology and colorectal ward's telling patients that you can NEVER have a bath with a stoma. While I was admitted I met an ostomate who had his stoma for 5 years and has never had a bath because of this advice. This frustrated me and after talking to urostomates in the Facebook group Urostomy Awareness, other people have also experienced this. It makes me sad that there are some ostomates out there who have not had a bath since their surgery.Not everybody has had this advice and I was glad that some Doctors have advised that it is good for the peristomal skin. So here is a post about bathing with an ostomy.

It goes without saying that after any type of ostomy surgery whether open surgery (laparotomy) or keyhole (laparoscopic) surgery the scars need to be fully healed before you can have a long shower or go in the bath. However, regarding bathing with a stoma I think healthcare professionals need to be more aware of the information they are giving out. Don’t get me wrong I have had AMAZING care at times and I wouldn’t be here without them, however, there are some areas to do with ostomies and especially urostomies that more education is definitely needed.

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My Partners Account of Being with an Ostomate

Hi, I’m Laurence and I’m a 43-year-old father of a lovely 10-year-old girl, whom I have full custody of. It has been one of the hardest things I have ever done but also one of the most amazing and rewarding things. There have been lots of learning along the way, then came the most beautiful courageous woman I have ever had come into my life.

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My Urostomy Surgery and 3 Month Hospital Stay

This is a detailed account of the 27th July 2015, when I had my bladder removed, an Ileal Conduit (Urostomy) formed and revision on my Ileostomy prolapse. Although I did acquire a few complications I still believe that it was the BEST DECISION I have ever made!

**Disclaimer: - Not everybody will have these complications after surgery. I do not want this post to scare anybody but I felt I needed to write a detailed account of what I experienced, how I overcome it and why I have NEVER regretted making this decision **

Briefly my life before my Urostomy Surgery

For the last 7/8 years, I have had an SPC and have suffered from horrific spasms that felt like my bladder was given birth to it! The year before Surgery, I was on my knees physically, emotionally and spirituality. I could not use the SPC with a flip-flow valve because the spasms were too much so, I attached a leg bag and allowed for the urine to flow free.

The beginning of 2015 I was getting bad haematuria (Blood in the urine) and after a Cystoscopy and biopsy, they discovered my bladder was extremely small and very damaged. The biopsy showed that the cells had mutated and I had early stage Bladder Cancer so I needed to have the bladder removed. Usually, I don’t tell people this bit due to it being caught so early and I don’t think of myself as having cancer but see it as a consequence of long-term catheter use and how my body had reacted to it. I would just like to point out that not all people develop cancer because of having a catheter. In my circumstances, it was the amount of damage that I had and my rare illness. They also told me that the way they removed my bladder and peeled it away from the uterus and the lymph node removal that I can never carry a child. So 2 weeks later after the biopsy results came back I was scheduled to have my bladder removed and an Ileal Conduit formed.

Surgery Day

I arrived at the Sandbanks Suite with 2 crutches and I was in so much agony unable to walk properly. I was very anxious that day but mainly I couldn’t WAIT to get rid of the SPC and my bladder. I knew deep down everything would be better and I would get a portion of my life back.

The surgery took 8 hours and my body struggled due to the Autonomic Neuropathy and POTS my blood pressure kept dropping during surgery and my heart stopped a few times, I woke up in ICU. When I first came round after a few days my bp was 50/35 and Jules my anaesthetist said it was touch and go during the op and I scared him a few times but I pulled through with my 3 consultant surgeons, registrars, 2 anaesthetist’s and nurses.

Eventually, I got transferred to HDU and I started to come round. A really vivid memory I have is waking up and thinking there was a ghost at the bottom of my bed due to the curtains having red hands on them. It scared me so much!! I was sad because my dad couldn’t come and see me because he had the flu and they wouldn’t let him in but because of what happened in surgery.My brother surprised me and flew down from Durham to be with me for a few hours and that was so lovely.  I was recovering fairly well and after a few days I moved to a Urology Surgical Ward and even managed to sit out in the chair for a bit.

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Ward 15 Urology Surgical Ward

This was my home for 3 months but at the time I didn’t realise I would be in for this long.

After 10 days I was doing really well getting out of bed and walking around, changing my Urostomy and I started to feel stronger. I was about to be discharged when I caught Clostridium Difficile (C-diff) off a patient and so here began the complication after complication which resulted in my isolated/lock down stay.

After I had contracted C-diff the Infection & Control Team were present on the ward every day for a couple of months and put very strict rules in place to make sure it didn’t happen again. I appreciate that the staff were honest with me and put their hands up instead of brushing it under the carpet.

C-diff

C-diff is short for Clostridium Difficile and is not a very nice hospital infection for the average patient, let alone if you have an Ileostomy and Short Bowel Syndrome.

The medical definition is a bacterium which infects humans and other animals. Symptoms can range from diarrhoea to serious and potentially fatal inflammation of the colon. In order to diagnose C-diff, there needs to be a stool sample and blood test. In my case, I was positive for the toxin enzyme A& B toxins. Also during my Glutamate Dehydrogenase (GDH) test, it detected the presence of an antigen that produces high amounts of C-diff. So I was given 3 IV antibiotics to treat it. These were Metrondiazole, Vancomucin and Fidaxomicin along with lots of fluids and potassium/sodium infusions.

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So...that day I  was packing to get ready to leave the hospital the next day when I started to feel horrific and my bag was filling up every half an hour and that morning I had 6 accidents. I felt so weak and sick that I couldn’t even change the bag myself.  The smell was HORRIFIC and I started losing consciousness, I had a temperature, was dehydrated and just felt like death warmed up.

My mum was with me and luckily she pushed for them to do a stool sample because of the smell and was concerned that I couldn’t talk and had lost capacity.  I was extremely dehydrated and that day Bob alone had emptied 5 litres of output. The nurses did not know what was wrong apart from one experienced nurse that recognised the C-diff smell and straight away bundled me into a side room and put me in Isolation. Isolation involves not being able to leave the room and when anybody enters they have to wear apron and gloves with no touching or hugs. Due to having C-diff then whenever I get admitted now I am put in a side room to start with because C-diff it never fully leaves your body. I quite like having my own room when I am admitted now so that doesn’t bother me. Apart from not being able to leave the room and get food!!

This is not an exaggeration but my output was actually BRIGHT GREEN and looked like methadone. I was emptying so much that the stoma nurse gave me a high output drainable ostomy pouch which I could connect to a 2-litre night bag usually used for urine. I was on my knees and never felt that awful in my life but having the night bag was such a godsend. I could sleep through the night and I didn’t need to empty it myself. The nurses did so I could just rest, sleep and recover. Not nice for the nurses because the smell was nothing I have ever experienced before in my life. Due to this Kevin, the Healthcare Assistant of the ward nicknamed me ‘Stinky Winky!’ His banter and humour kept me going through the 3 months isolation and I made good friends with the nurses during this stay.

Due to my output being so high. I was extremely dehydrated, vomiting and unable to eat they put me on TPN.

What is TPN?

TPN provides all nutrients and roughly 2000 calories that go straight into the vein, bypassing the usual process of eating and digestion. The TPN solution contains glucose, salts, amino acids, lipids and added vitamins & minerals.

My veins had collapsed so I need 2 PICC lines one in each arm. One for fluids/antibiotics and one hooked to up to TPN.

Vitamin k is given as a supplement infusion on top of the TPN to stop re-feeding syndrome that can occur. Every time I was hooked up to this I could taste the disgusting metallic taste in my mouth and did dread this infusion. Due to the TPN bypassing the stomach I still felt starving but I was so poorly it didn’t really matter. When eventually I was allowed to eat I remember just craving and loving the taste of peaches. It was heaven. Although I was taking 2000kals a day from the TPN I did loose a lot of weight.

Introducing food again was hard and I had developed pseudomembranous colitis because of the which didn’t help and can flare up today. We also believe that this episode is why now I have the colitis but also diverticulitis in my large bowel. Unfortunately, a colectomy isn’t an option for me because the surgery is too big and due to the kidney failure my body wouldn’t cope.

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Other complications that occurred

I also developed sepsis twice which involved a trip to the ICU unit for a few days and I had a couple of cardiac arrests because of it.

As discussed in my last post during this stay I had Stenosis of my Stoma. After the treatment for C-diff while I was admitted my stoma went on strike and I didn’t have any output for a long time. Hence why 2 weeks after my discharge I had to go back in for more surgery on this. I believe I also went into kidney failure here as well but they did recover when I got better.

How it affected me emotionally and mentally

Being in isolation for those 3 months not able to hug or kiss my loved ones, everybody wearing aprons and gloves I felt....dirty. Even though I knew why they had to be gowned up I still resented it and the horrible c-diff smell didn’t help this feeling. This is something I still battle with today especially with the prolapse and accidents but I work through it. It was a hard time but I got through it and since getting rid of the SPC I can say from the bottom of my heart it was the BEST decision I have EVER made regardless of all the complications I acquired.

Being stuck in that room not allowed to leave for that long forced me to face myself and a lot of past issues came to the surface. After I got discharged I did start abusing the pain medication prescribed to me. But now I see it was to cope with the trauma of this stay.

I felt so poorly that I don’t think I read until the last month and only really managed to listen to music and try to get through a minute at a time. It was touch and go many times but I did it with help from my AMAZING friends and family that still came to see me when the smell was horrific and carried me through. I will always be grateful to my ex during this time who came up to see me every day sometimes twice a day. I cannot take that away from him and he did step up. Below is a picture of a very close male friend while I was in isolation, who has been my rock since meeting him.

RESIZE

When we are given decisions about removing organs and having a stoma regardless if it is for a urostomy, colostomy or ileostomy, it is always hard not knowing the unknown. It is easy to project but even though I had a hard time I would still say my life is 1000% better and I cannot express that enough!! The gratitude I have for ALL the hospital staff from the cleaners to the consultants is enormous. All of them helped me survive and get through this time and now I am thriving

Thank you again for reading my post and please feel free to leave any comments. 

What is Stoma Stenosis?

This can be a stoma related complication and in my case was caused because the spout was sewn too tightly to avoid Bob (my Ileostomy) prolapsing anymore. This isn’t very common, so I thought I would write some information about Stoma Stenosis and then include my experience of it.

Stoma Stenosis?

Stoma Stenosis occurs when there is a narrowing of the opening of the stoma or within the bowel near the opening. 

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