THE DISABILITY THING

I don’t like to class myself as disabled because people look at me and might even question me, which in turn makes me feel that I shouldn’t have that blue badge, or the orthotic for my foot drop or that my fistulas are not visible so therefore I don’t look ill or have chronic health issues.

I look like I can function as any healthy person might, but I do have health problems that you can’t see.

I have had neurological problems for many years which include foot drop which shows itself on many an occasion and can cause my foot to miss steps or even miss nothing in particular. If I walk any real distance my foot starts to drop and drag, it is tiring and awkward.

I fall and trip often.

I do worry that one of these days I might do something more serious than cuts and bruises, I have been close to hitting my head a few times.

They say it might be MS as I have a lot of clinical aspects but they won’t commit yet. They treat me as if I have got MS but I haven’t had a clear diagnosis, it can take years before they decided for sure.

I have a diagnosis of Idiopathic Intracranial Hypertension too, which means I have some mega headaches and awful pulsatile tinnitus because the fluid around my brain is more than it should be. I have had lumbar punctures to remove that pressure and all I can say is I am glad I don’t have it as severe as some. I was having a lumbar puncture for MS when they found my pressure to be high.

Then of course there are the fistulas that I have lived with alongside the stoma for nearly five years. I get pain and leakage and it generally makes me tired. I had a big chunk of muscle removed from my buttock and thigh which can have it’s own troubles.

I am not here to say look at me, feel sorry for me, my life is great even with my problems, I am happy and manage as best I can .I am here to ask everyone to accept others, and just because they look great, there may be hidden disabilities or health issues that you just cannot see. If someone gets out of a car with a blue badge, assume there is a hidden disability if it isn’t obvious. You don’t get given a blue badge without reason and it is not for anyone to judge if you need it or not, same for disabled toilets, and the worst culprits are usually other disabled people who’s disability or health issues are visible and don’t need to feel like they need to explain themselves.

 

I have actually never been approached by anyone but I can see the look. I know that some folk look at me and think I am just sneaking into the disabled toilets because I can’t be bothered to queue. If I don’t need to use them I won’t.

Merry Christmas and a happy new year

Another year has gone by but a very strange and scary year for most. I hope everyone is keeping safe and well.

Thank you for still following my blog although I have been a bit quite recently but hope to continue more in the new year. I really appreciate you all and would like to wish you a Merry Christmas and a happy and importantly, a healthy new year.

Crohns and Colitis awareness week 2020

 

Another year has gone by with lots of social media presence helping to spread awareness of these terrible diseases.

There are many manifestations of these diseases apart from going to the toilet multiple times a day AND night. There are many painful and degrading tests and medical procedures.

It is about the chronic fatigue, the weight loss, the vomiting, the pain, the bloody stool and mucus, or even just blood and lots of it, it is the surgeries, the skin diseases, the anxiety or depression, the high doses of heavy duty medications, the joint pain, the incontinence, the liver diseases, the eye inflammation, the multiple mouth ulcers, the hair loss, the fistulas, the swollen anal skin tags, the enemas and nasogastric tubes, the cameras in all bodily opening, the urgency, the panty liners and pads, the missed events, the steroid moon face, the lack of understanding, the needles, the uncertainty, the side effects to meds, the embarrassment of not having control over your bowels.

This was me the night before emergency surgery to have my colon removed.

These are just a few of the things we have had to put up with, so if you know anyone with IBD then don’t under estimate what they are going through, a lot of which is hidden. Ask them is they need help, or just sit and chat with them, it can make the world of difference.

IBD it’s not for the weak.

Pregnancy and stoma or J-pouch top tips

 

Hi, this post has been created using tips from ladies who have been pregnant whilst having a stoma or a j-pouch, they are also members of the group Ostomy & J-pouch moms, so you can learn from those that have the most experience. Thank you for all your input in this post and I hope it helps those women who are thinking of having a baby but want more information, make a decision.

Alice ( right picture above )

“8 months pregnant, didn’t have any complications with the bag apart from a little parastomal hernia that went back in after giving birth. I did have to have a maternity counsellor for my mental health as being back in the same hospital as when I nearly died bought back some bad memories of course.She thinks I had PTSD. So definitely take care of your mental health because we’ve all been through a lot, so this stressful time is bound to bring up some stuff for a lot of people.”

” Be prepared fro size changes with your stoma, and to go from a convex to a flat bag agin was bliss.”

“I wish I had photos of my pregnancy journey with a bag. For some reason I didn’t want to have many taken, unlike my 1st pregnancy without a bag.”

” I never took a picture of my stoma while pregnant. I wish I would have. It’s so weird because it moves lower and lower and it’s hard to do a bag change. Bowel obstruction at 28 weeks so I was in the hospital for a few days and then on a full liquid diet.”

” I have two J-pouch babies. Both pregnancies were different, first one was a breeze, however, I did experience intermittent bleeding which they put down to pressure from previous surgery and had this again with second pregnancy. Both babies lay so low they thought head was engaged and were hard to scan from 12 week appointment. Second baby caused huge pressure on my pouch and the last few weeks caused an intense stinging pain- ice wrapped in toilet paper helped to sooth this”

” Get a good OBS/ GYNAE, preferably one with experience with ostomates. Have a clear birthing plan.Some can have a natural birth but others may not be able to for various reasons.”

” Take pre-natal vitamins that are easy to break down and get a good quality one”

“Eat small frequent meals, stick to food that is easy to digest. Ostomates have a higher risk of blockages while pregnant.”

” Order cut to fit flanges as stomas tend to grow wider. Be prepared for it to possibly get longer or prolapse. Some even experience a hernia.”

If you would like to add some more tips to this list then please get in touch using the contact form, I would also like to make a photo gallery, so please send any in that you would like me to use.

 

 

 

Muscle transfer and flap surgery recovery IGAM flap

WARNING- This post has surgical wounds.

I have just had a big surgery for a perineal vaginal fistula.The procedure is known as an IGAM flap. Inferior gluteal artery myocutaneous flap reconstruction. I had a wide excision so that my surgeon could clear the fistula and unwanted tissue and repair the vaginal wall, then muscle was taken from my buttock and top of thigh to fill the dead space, where a flap of attached tissue was laid over to cover it, and stitched into place, this ‘ paddle’ as they called it, enabled them to view the wound regularly to make sure the flap was working and no tissue necrosis was forming.

DAY 1- SURGERY DAY- PART 1

I set my alarm for 5am so that I could drink the rest of the pre-op drinks.  I didn’t need the alarm. My nerves are just starting again so I watch The Real A&E in the hope that it takes my mind off my problems.

Weird being up and showered by 5am, don’t normally see this side of 7am unless I am going somewhere hot. No bikini where I was going.

Nerves were kicking as we made our way to the ward. I was prepped and ready to go. Usually I walk with my pillow and anti slip socks down to the theatres but this time I was in a brand new theatre further away so got to have a ride on a bed. I was given an epidural for after surgery pain relief, which took a few goes because of my ” Wonky back”, anaesthetists words, as was ” Did you know that this kind of surgery is very painful?”. Thanks for that. The oxygen mask came next, not keen. It reminds me of horrible teeth extraction as a kid with the gas. I can still smell it. After a few stabs in my arm, a vein was suitable and a few minutes later I was asleep.

I remember waking up and being told that surgery was finished and all went according to plan. I wasn’t in pain because of the epidural, and I am one of the lucky ones in that anaesthetic doesn’t affect me badly. I was taken to the ward. I couldn’t see much of the wound yet, I had a drain in the top of my thigh which I thought was a weird place until I saw the actual scar…..

 

The next day the nurse changed my dressing and I asked if she would take a photo of my scar on the buttock, I unfortunately won’t be showing my actual flap as is it hidden between my butt cheeks, but you can get the idea that it is a rectangular piece of skin and tissue that is stitched there. When I first saw the photo I was a bit shocked at the scar, it was like a great white shark bite is the only thing that came to mind. Although since then I have other pics that show it looking reasonably neat and tidy, and a district nurse has since said that it actually looks good and some that she had seen looked barbaric, so I guess it’s not too bad after all.

First pic is second day, second pic is about 10 days post surgery.

 

The care was excellent and my surgeon and plastic surgeon came and said they were pleased with the result and were hopeful that this would do the trick with the fistula. I opted to have the epidural removed after only a couple of days because it caused awful itchiness, and my left leg went too numb and they were concerned the epidural had done something. It was all good and the numbness went away ( except at the site of surgery).

I was very surprised how quickly they discharged me, drain came out on day four and that is when they let me go home. I was a bit concerned because the drain site was leaking, and I wasn’t allowed to sit at all for four weeks AND I wasn’t allowed to lie on back OR right side for much the same. This is all well and good but eating was a mess and my left leg was so so achy and painful after a short while. I didn’t get any offer of occupational therapist to see how I would cope with this, and mentally it was dreadful after about 2 days at home.

I have an issue with NHS surgery aftercare, it is more or less none existent as I will explain in my next post. In fact if it wasn’t my surgery and life on the line it would be comical. When you are discharged home even with district nurses ( who can’t tell if surgery is failing or what the fluid coming out of other exits is ( yes this was happening ) then you would think there was a plan to get in touch with someone who does……..

 

 

 

Merry Christmas to all my followers

I would like to thank all my followers and readers a very merry Christmas and a happy new year.

I am so grateful to you all for reading and commenting on my posts and I hope you will stay for 2019 too ;). I couldn’t do it without you.

The fact that you have read and liked my musings has helped me to come to terms with my new life. It has been difficult, funny, sad, scary, lovely, but through having a stoma I have met some wonderful people, and chatted via message to folk who know what it is like to live with a stoma.

THANK YOU THANK YOU THANK YOU THANK YOU

 

Ostomy and J-pouch moms

 

 

Although I am not someone who had a stoma and then had children, my story is the other way around, but the reason I joined this lovely group was because I had IBD whilst being pregnant. I just thought it might help someone on there who was considering getting pregnant before surgery.

Ostomy and j-pouch moms is a fantastic group for anyone considering stoma or j-pouch surgery and having children. There is a lot of support on there with others who have experienced this, so are used to all the questions.

Tara started the group in Canada and here is her story….

I’m from Toronto, ON, Canada. I was initially diagnosed with UC at the age of 17. I gave my IBD the best fight I could, through prescribed medicine, natural medicine and diet. I eventually decided my best option for a life outside of the hospital and chronic illness was surgery to create an Ostomy. At the time of my decision, I was diagnosed with crohns and colitis. The pathology of my removed colon showed a definitive crohns diagnosis. Months later, I decided to make it permanent and had the Barbie butt surgery.

Life has been good with an Ostomy. For years I decided it was my personal business that I had an Ostomy. Only some friends and family knew about it. I worked, traveled, swam, danced and dated and married. I thought since I was doing so well, maybe I could help others that weren’t, so I went to an Ostomy Toronto meet up. It was at that first meeting that I met some amazing ostomates that became good friends. The more meeting and events I went to, I made more friends that had been through what I had been through. I never knew I needed them in my life. I also met a lot of amazing colonless peeps online. I decided to “come out of the bathroom”, and I made a public post about having an Ostomy. I started volunteering for Ostomy Toronto, I wrote regularly for the newsletter, spoke to nurses and became a proud advocate.

Years before my husband and I started trying to conceive, I was worried if it was even possible to become pregnant. I had a friend do a google search for me. She found an article that was short and basically said it was possible. Through Ostomy Canada Society, I also made friends with other Ostomy mothers and had them share their stories with me. I also spoke with a GI and some stoma nurses, who all confirmed it was possible. When my husband and I were ready to start a family, through a fertility doctor, we found out that I had scar tissue around my Fallopian tubes. Our doctor said our best chance of getting pregnant was IVF. Thankfully, the first try took. Our daughter is now 4.

When I was trying to get pregnant and when I became pregnant, there was no specific support group for women with ostomies. I asked around in various groups on Facebook. So many questions were left unanswered. At 8 weeks pregnant, I decided to start Ostomy and Jpouch Moms. I added all the women I had met that far, who were moms, ostomates and jpouchers.

HOW UTTERLY CUTE IS SHE?

It was so great to have these ladies at my fingertips. I also never thought it would grow as much as it did. I have also added 4 admins to help with adding members, deleting spam posts or overly negative(even bullying comments) and to help with posts that get members interaction. While some hurtful comments aren’t always caught or deleted, we do our best to keep it a positive place. It’s not a group where bully’s post rampantly. With all the negativity on the internet it’s just not tolerated in the group.

The group is close to 2,000 members. While it’s a large number, I can’t help but think, that there are way more women who need to know our group is here to support them. That it is possible to become pregnant with an Ostomy or Jpouch and it has happened for a lot of women who’s doctors have told them it isn’t possible. I started a page called Ostomy and Jpouch Moms Worldwide in hopes that members or even non members would write their inspiring stories, spread more awareness and who knows, maybe some from the medical field will find the page, read features and change how they look at our fertility. I’m always happy when someone wants to be a feature. I also recently started an Instagram account for further awareness.

While I have help from admins, our time is stretched between being Moms, work and sometimes our health. I’m so grateful to those who are willing to help in any way. If any advocates are reading this. Please share with your followers and feel free to contact me directly about spreading more awareness at tara.parkal@gmail.com or send me a message on Facebook.

Please click on the links below to get through to the pages.

OSTOMY AND JPOUCH MOMS

OSTOMY AND J-POUCH MOMS WORLDWIDE

 

The colorectal nurse, a rare breed indeed, National Nurses Week

Seeing as it is National Nurses Week I decided to write a post about the amazing colorectal nurses who cared for me for many many weeks on the colorectal ward E14 at the Queens Medical centre, Nottingham.

#ThisNurse

They were all totally awesome and caring but a few of them went above and beyond. One nurse in particular was so kind all the time but I remember if I was upset which was often, and she was on duty, she would come and kiss my forehead. This was such a nice gesture that I would like to thank her for making me feel so cared for. She had the softest lips too so it really made you feel better. ( it probably sounds more weird than it actually was lol).

They would help me with my depression and chat to me when possible. They clubbed together and bought me a cuddly toy and a card for mine and my husbands anniversary, as I was very poorly on that day. If they saw me walking only a few yards, they would make me feel like I had walked a mile. The sisters on the ward were not like Hattie Jacques as you would imagine, but lovely knowledgable people who knew when I  needed to do certain things even if I really couldn’t face it, to letting me off now and again when I was at my worst.

I remember my appetite was non existent for many weeks and I was so scared of not ever getting it back, my family would be worried and try and force me to eat more which of course didn’t work. The nurses would tell me that if I only ate a very small amount, it would be helping and try not to worry about it, that it would improve over time. The more I stress about it the worse it would be, so I tried not to worry, as it happens I did need to be NG tube fed eventually, but the nurses were always calm so they helped in many ways over the food issue. Of course ,they were right and my appetite eventually returned with a vengeance.

They cleaned and packed my wounds daily, gently and caring. They washed me and changed my soiled clothes, never making me feel like I was to blame.

They spent time with me, time they didn’t really have.

Considering their job work load and the type of ward they work on ( all poo and bowels) they are angels. They care for some of the most ill patients as their chosen field,  in colorectal, they have to be a special person to choose that calling.

From the healthcare workers to the sisters, you are one in a million.

You are never “Just a nurse”

 

Still waiting………….What has happened to our NHS?

 

Ok, so over a year ago I had my bottom removed, my rectum and anus to be exact, and sewn shut. I thought ” Great I can start to recover and get on with my life”, how wrong was I.

A month or so later I noticed some fluid coming out of the wound. I got my poor husband to take a look ( he gets all the good jobs) and low and behold I have a neat little hole. I went to see my GP who took a swab and said I had an infection. I was given antibiotics and things improved for about three days. It came back with a vengeance. I was due to see my surgeon anyway and he said it was a sinus tract. He wanted to leave it for a bit as they can sometimes heal themselves. A few months later I was still in distress with the fluid and pus coming out so my surgeon said he would do an MRI to see the wound and how the sinus was situated inside. I again has to wait a few months for the MRI and again to see the surgeon for the results.

The result was that the sinus seemed to have a cyst at the top near the bottom of my spine and he wasn’t sure if it was connected to the sinus. He needed to ask some colleagues opinion and get back to me. The surgery would either be a simple laying open of the sinus tract which can sometimes return though, or a bigger operation to fill in the dead space left in my pelvis which is causing the leakage and some sort of flap surgery where a plastic surgeon would be involved.

I waited more weeks and rang a few times for an update. Eventually the secretary said he wanted to see me in clinic again to discuss. I then had to wait a few months for that appointment which was just over a year later from the proctectomy in which I have this continuous leak with discomfort and often leakage through clothes. It has been a complete nightmare especially when I am out of the house either socialising or at work. I have leaked bloody fluid at a party and my wonderful friends had to strip me in the toilet and rinse my clothes and dry it under a hand dryer. I was close to going home but didn’t. I leaked at a restaurant on holiday in Spain and leaked through my shorts, and again needed help to tidy myself up. This is all with panty liners on too. What is going on here? because I am now a minor surgery in comparison I am deemed well enough to suffer. I now sometimes wear “nappy” pants which is demoralising enough. I get through lots of panty liners which is costing me money as I have not been offered an alternative.

Yes this is a moaning blog post, I feel I have to moan to keep sane. People need to see what is happening to their neighbours, friends and family.

I don’t blame the NHS per say, I blame the government for allowing this to happen. My surgeon is so busy that he is back logged with surgeries. The 18 week NHS deadline is a farce. What happens when you are not seen within the deadline ? nothing at all. I can’t afford to be off work because I need those weeks to recover from surgery. I pick up every bug going because I have the sinus and it is tiring. I have very low Vitamin D and borderline iron deficiency, which I am convinced will improve once I am done with surgeries.

I feel left in limbo for a year with no date yet for my surgery, I am struggling to cope with it all now and can’t plan my life. I have made the mistake of believing the NHS dateline and booked an paid for a holiday with my friends in plenty of time to recover, or so I thought….. alas it looks like I might not make the holiday after all. I can see my beloved NHS taking a turn for the worse this time, and it truly breaks my heart.

I was in this predicament in the first place because there were no beds, and I was pushed to one side. It isn’t just me, it is many people playing the waiting game………..and that game is in extra time.