The Appointment Arrived… 

If you’re a regular reader of my blog you may have read my Desperate Plea; an email I wrote impeaching a surgeon I’d seen months previously to help me. Basically I have prolapses galore since the birth of my son. That combined with years of bowel problems and slow transit has left me with severe difficulty when defacating, or even passing wind. To the point my bowel becomes incredibly sore and bloated, resembling that of a pregnant woman. This issue is really taking over my life, to the point I literally begged for the doctors help. 

Normal stomach and bloated stomach. This happens daily and you can see my tummy swelling.

Miraculously the surgeon actually read my letter and even responded within a few hours, promising to get me in his clinic. A promise he indeed kept. 

Yesterday was that appointment. The one I’d been simultaneously hoping for and dreading all at once. The one which is been mentally and emotionally preparing for. I’d steeled myself for the very real fact that he may tell me I couldn’t be helped surgically. I also looked into options I thought may be of help. Options which my friends and family believed would never happen. Never even be on the list. They were wrong. 

Yesterday, as I laid everything on the line to the surgeon he looked me dead in the eye and told me I had three options. 

1 – have a tube as small as a biro formed from my skin into my bowel which I would then flush through with saline every day forever. 

2 – have the prolapse repaired and then have the tube inserted if I’m still having problems. (Which I enevitably will have as my issues began as a small child)

3 – a colostomy bag. The option everyone but me thought would never happen.

I asked his advice. What do I do? He couldn’t tell me. Ultimately, this is my decision. It’s my body, my life, my choice to make. 

Whilst I understand that; a huge part of me wishes he had been able to promote one option above the rest. To take the responsibility from my shoulders and ive me someone to blame should it all go wrong. Or even if it goes right and I just have a tough day. 

Right now I’m in shock. I don’t know what to think and my emotions are all over the place. I’ve burst out crying and made many many inappropriate jokes since stepping out of that appointment. I’ve researched, and worried, and researched some more. There’s not been a walking minute where this huge decision hasn’t been nibbiling away at the corner of my psyche. 

People have said to forget about it. To put it to the back of my mind for now. My surgeon is going to discuss my case at the Multi Disciplinary Team Meeting. I will be having a Marker Study on my bowel to see which bits are pulling their weight. Then, in six to eight weeeks I will be back in to see him. Possibly signing up for surgery. It’s not that long to wait, but right now it feels like forever. 

I’ve asked around for people’s opinions. Many think have the prolapse repaired and just see how I go. Or just have the small tube. But, having lived with my problems, I know that neither of those will work without having both done. They cannot be done at the same time. So I’d need at least two operations. My surgeon couldn’t tell me if the flush outs would be painful. Only that they take at least one, maybe two hours and must be performed daily. Or every other day if you’re lucky. So even on days I cannot see straight, I’d have to get my ass on the loo, and stay put. If it’s anything like when movicol explodes through me.. it will be painful. I don’t know if that’s a sustainable option for me. 

So I come to the bag. A huge operation to form a (possibly irreversible) massive change to my body. Scary to say the least. The thought of never having to go through the ordeal of passing a motion through the traditional exit ever again though? That leaves me wanting to cry tears of joy. It’s not that simple though. I know I get a lot of mucous build up. So, if they don’t take my colon I’d still be having to go and evacuate that. If they remove my colon then the op becomes irreversible for life. Which would be the best option? Would I still be able to eat steak?  My body is super sensitive, could I cope with the adhesive of bags on me permanently? Would I still be able to eat steak? Would it be possible to stay hydrated so as to keep my POTS in check? Serously, steak? How would my EDS impact healing? Would it put my husband off me? (Regardless of the fact he claims it won’t.) Could I still sleep on my tummy? For the love of god, could someone just tell me if I could still eat steak???!! 

I have a lot of questions. New ones are popping into my mind by the second. But I’m trying not to focus on this too much. I’ve been called brave. But I’m not. I’m scared. I’m terrified. I’m frightened of having another operation. I’m scared of adjusting to a tube or a bag. Mostly though, I’m scared of having to continue as I have been for the rest of my life. I’m scared of missing out on my kids growing up. It’s that fear that pushes me forward. That stops me hiding in a corner and refusing surgery. I have a family to fight for. A family that needs me present, not locked away in pain. For them, I will do anything. 

** NB. The surgeon said my frank openness has been a great help in treating me. He wishes more patients would leave their modesty at the door and just tell him like it is. That’s perhaps something to consider at future appointments. 

A desperate plea… 

Below is an email I sent this morning to a specialist I saw last year. It’s not professional. It’s not the right way to go about things. But it’s real. It’s my life. It’s the level of desperate I’m now at. I’m not sharing this for sympathy. I’m sharing it to highlight the thousands of people out there who are just like me, living  with these problems. Sharing this isn’t easy. It’s hard not to be embarrassed and disgusted with myself. These are issues often kept behind closed doors. But I’m opening them. I refused to be ashamed. It’s not my fault I have to live like this. 

If someone told you they had a prolapse, would you think it a big deal? Would you expect it to seep into every aspect of their lives? Would you realise that it could be on their mind of every second of every minute of every day? Probably not. Well… maybe this may open your eyes to what it’s really like…

Hello Dr ##1##, 


I’m sorry to contact you directly, but I’m unsure what to do. I feel I have to take things into my own hands. 


I have had my surgery in October with Dr ##2##. She addressed the cystocele and prolapsed uterus by performing a vaginal hysterectomy and anterior prolapse repair. No mesh. 


However she refused to touch my rectocele, which continues to get worse and worse. I now cannot pass wind without pressing on my perineum, or bulge within my vagina. The only time I pass any stool is when my laxatives cause me to have violent and painful loose stool. However some of this always collects in the pockets of bowel and quickly hardens and blocks it. Mostly I have to manually remove my stool. This involves putting a thumb inside my vagina and two fingers in a v around my anus (which when I need a motion bulges out to varying degrees). 


I manipulate the whole area in order to push the stool out, as my lower section of bowel doesn’t push at all. Often times I then have to insert a digit into my back passage to try and help the process along. Inside is a large cavern. It feels almost flying saucer shaped. (Sorry that’s all I could think of to describe it) I have to sweep my finger around to collect stool and mucus. Above this area it seems to become tighter again, but still won’t push, though the muscles around do clench. Since my surgery however there also seems to be a large grissly bulge protruding into that upper area. 


Unless the laxatives cause me to have severe cramping I very rarely can tell if I need to pass a motion anymore. The only things that alert me are bloating, a heavy feeling, and being unable to urinate. This also happens with the large amounts of trapped wind I get. You don’t realise how much you must naturally pass throughout the day until you can’t do it anymore and it’s all stuck. Let me tell you, there’s a lot! I could power a wind farm. The only way I can tell which it is is to feel whether my bulge is full of gas or stool. Then get it out. 


Every single time I go to the toilet is an ordeal. I’m left feeling in pain, bruised and without any dignity. Because of my POTS and EDS the positions I get myself in often cause my joints to hurt and sublux. My legs go completely numb and my heart fluctuates. I also get hot sweats and dizziness. All this combined means my husband often has no choice but to supervise me on the toilet and help me back to bed. I can be on there an hour or more at a time, and bed is always where I end up. It takes so much out of me. Plus, I never go just once. Often there’s at least three trips to actually get the entire stool out. 


I have ended up in tears, wishing for an ostomy over this life. How crazy is that? I know it’s crazy. But I just cannot go on like this. 


The only thing that Dr ##3## can think of is regular irrigation. Possibly even weekly, from now until kingdom come, to get my bowel cleared and hope that in between I feel ok. He said he doesn’t believe I have crohns. There’s no sign of it on any recent test. But he told me, if it’s IBS it’s the strangest and most aggressive type he’s ever seen. 


Please will you help me. Dr ##2## was lovely. But you are the best in colorectal surgery. I know I’m a complicated case. I followed your instructions. I saw a different doctor. I did everything you told me to. Now, months down the line, the problem I came in with is just getting worse and worse. You wrote to me saying if I was still having problems to get back in touch. Whilst writing this letter I got a call back from a Secratary. She told me my GP must write in and I have to wait all over again. I feel like I’ve been waiting forever. I feel like the main issue I need help with was pushed aside and I’m just left here to suffer. Now to hear I’m starting from scratch is devastating. 


My in laws have booked to take us to Disney in early 2018. They’ve already put it back two years because of my health. They can’t move it again. How do I tell my kids I can’t go because I can’t go to the toilet like a human being and it’s ruining my life? I struggle to even wear clothes due to the extreme bloating. How do I tell them that after all the waiting and the surgery I am right to the back of the pack again? 


I know I’m just another face in a sea of patients begging for your help. But I took your advice. Please, now will you try to help me? I’m not too proud to beg. 


If you got to the end of this letter I appreciate it. Most doctors would bin it immediately. I really am sorry for contacting you directly. But desperate times and all that. Also, Dr ##2## really was lovely and treat me very well. She just hasn’t fixed the thing that most impacts my life. 


Any advice you have would be greatly appreciated. 

Regards,

J

Please. If you know of anyone with these problems, don’t make fun or make light. Be aware of the fact that these issues can make you feel sub human and worthless. If, like me, you are going through this. Don’t just sit back and wait in line. Dig your heels in and kick up a fuss. Push hard for the treatment you need!! 

If by some miracle any Doctors happen to read this blog. Well, to you I ask this. Please try to understand that prolapse can impact a persons entire life. Many people in support groups Im in are teetering on the edge of a complete breakdown. Treat us with respect and care. But also with a sense of urgency. The longer we live like this, the less human we feel. 

There is another way…

There is another way…

In the last few months my levels of pain and exhaustion have hit a whole new high. This has left me pretty much bedbound most days. Then awake and restless at night. Alongside all that, my Gastroparesis has flared, meaning I’m nauseous almost all the time. My stomach feels full and bloated and eating, or even drinking, causes severe pain. When everything piles up like this it’s hard to cope. I found myself breaking down and sobbing on an all too regular basis. 

I’m already taking slow release Tramadol, Paracetamol and Codeine for my pain. I also have Gabapentin for nerve pain and other issues. 

Please note, it is not generally advisable to take Tramadol and Codeine together. I have special permission from the pain clinic and have been given clear instructions on safe dosage. Please don’t ever take medication that is not prescribed to you, or at a higher dose than prescribed by your GP. 

I cannot take anything Ibuprofen based due to my IBD, nor can I take many of the anti nausea medications that are on the market. During my last Gastroparesis flare my GP tried me on many of these medications, they either didn’t work, upset my bowel, or worse. What could be worse? Giving me the symptoms of a brain tumour, that’s what. My body reacts to things in very weird and wonderful ways. Waiting for my test results to come back after I’d been told I was displaying all the signs of a prolactinoma was one of the most terrifying experiences of my life, one which I do not intend to repeat. 

So, as you can imagine, my options are now pretty limited. Basically there’s only one thing to move up to. Morphine. Be it tablet or patch form, it doesn’t matter. That’s the only thing left. I discussed this with my husband. Yes, I want to feel better. Yes, I want to be up and about more. But Morphine? I’m thirty years old.  Do I really want to put my, already dysfunctional body, through that? I know that Morphine is a strong pain relieving option. But I also know that any pain relief doesn’t seem as effective on me as it is on others, this could be down to my dodgy collagen. Even in hospital when I’ve been given Morphine intravenously, it’s not had a major effect. I never ever get spaced out or super relaxed. It just doesn’t affect me that strongly. So I’d be putting my body through all that stress, for a minimal effect. I don’t think it’s worth it. 

But what other choice did I have? None. Or so I thought. Soon after our conversation my husband saw an article about the Medipen which he sent over to me. Basically the Medipen is a vape machine which uses extracts from the Cannabis plant, combined with coconut oil. The extracts are completely devoid of any of the chemicals which cause the feeling of being ‘high’. They purely contain the chemical which has the most benefits, CBD. I’m not going to lie, I was wary. Very wary. Cannabis has a lot of stigma around it. Then add to this the fact that you inhale it in a vape machine, meaning you look like you’re smoking. That was too much. 

I’m not anti Cannabis. I don’t believe it’s a big evil drug that is bringing it to its knees. Honestly I don’t. Used in the correct way, I can see why it could be popular. However I am anti smoking. I do not smoke, have never smoked, and have no desire to. I’m not going to lecture people about their life choices, but in my opinion my body has enough wrong with it without me adding to the list. When you think of Cannabis that’s what comes to mind. Smoke. Lots and lots of smoke. Spliffs, bongs, hash briwnies. But mostly dingy rooms full of pungent acrid smoke. That’s the stereotype. The stereotype that is widely spread and etched into people’s minds. But that’s not me. I’m a mother. A none smoker. A disabled member of the community just trying to make the best of my life. 

My initial reaction to the Medipen wasn’t great. But I read the article. I researched. I looked on their website. Mostly I checked out the reviews. Page after page after page of people thanking the company. People with Cancer, MS, Chronic Pain, Chronic Fatigue, Insomnia and bowel complaints, all were seeing results! They were gushing about their great experiences. Better sleep, less pain, more energy. The reviews were astounding. Many even called it life changing. My viewpoint started to shift. Reluctantly I discussed it with my doctor. Terrified by his reaction. What if he thought I was a pot head? I couldn’t believe my ears when he told me to go for it! Recently another patient of his had tried a similar product and had excellent results. He agreed it was time I started thinking outside the box in order to improve my day to day life. Wow! The (unofficial) go ahead from my doctor! 

That night I contacted the company and arranged for my sample. I’ve been anxiously waiting for it ever since. Desperate to try it, but afraid the hype was too much to be true. Honestly, I was afraid to even hope. As for the stigma? I put it out of my mind. I told myself, who cares what other people think?! I need an improvement in my life. I cannot keep going like this, and I don’t want to take opiates. Besides, as with stigma about anything, we just need to raise our voices and educate. Show people they’re wrong. Highlight the true facts of the matter. 

My Medipen arrived this morning. I’m looking forward to seeing how I go with it, and updating you all on my experiences; from my initial reactions (including reactions to it from those around me) to the results of longer term use. Here’s hoping it’s all positive!! I’m just happy I actually have something to place my hope in for once. 

Its arrived!!

A sinking ship. 

Since having my baby in October my treatment seems to have stalled. Well, I hope it’s just stalled. Ground to a devastating halt may be a more accurate description. By now I was supposed to be back on my mess and well on the way to being ‘better’, or as close as I get. Instead I’m confined to the house, and very often to my bed. I feel like a completely useless lump. A huge burden on my husband and kids. Let me tell you, it’s not a good feeling!

The annoying thing is, I could be on the road to health. I know who I need to see and what I need them to do. There is only one problem. My GP. 

In general I’m very supportive of the medical profession. But this woman has me pulling my hair out. Quite literally. Mainly because she believes that I should be referred to my specialists one at a time. This is ridiculous. I have a multisystemic illness, it affects various different parts of my body simultaneously. To this end I need to see various different doctors for my care, including but not limited to cardiologist, neurologist, gastroenterologist, rheumatologist, gynaecologist and pain clinic. These doctors need to liaise with each other in order that treatments they give me don’t clash and so I can get the best healthcare plan. 

But no. Not according to my GP. She believes that anything above two referrals is too many. That my problems can wait. She thinks I should let one doctor ‘sort me out’ before moving on to the next. But it doesn’t work like that. Each problem affects the other. They are all intrinsically linked, entwined through me like strangle weed throughout my body.

Imagine if you will a ship. In its hull are ten holes. The navigation system is on the blink and there’s a fire in the engine room. The ship is lost at sea. You could look at the issues one at a time. The holes first? One by one. But then the blaze has taken hold. So tackle that first? Now the boat is sinking. Surely the navigation system is last priority? But your boat has drifted so far you are in dangerous waters with not enough fuel to get home. Each problem is equal to the last. What the boat really needs is a team of people, each fighting to keep it afloat. Each working independently towards a shared goal of retrieving the situation. 

I am that ship, and I’m trying to plug holes and put out fires as they come along. But I am one woman. I need my team, because right now I’m sinking. All I can hope is that I can make my GP listen and stop blocking me.