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06-13-2017, 10:28 PM   #1
Vintagevik
 
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10 years of misery, looking for advice and my life back!

Hi everyone,
I'm so pleased to have found this site and forum. I have just read the spoon theory and cried my eyes out, I have been trying to find a way to describe that for years and will be sign posting people to it whenever I can!
My story is long, 10 years worth, and am after some advice for when I next see my GP.
So today I have just had my 6th operation for anal fistula.
2007- abscess drained
2010- fistula laid open
2011- seton stitch inserted in fistula for drainage
2012- seton removed and fistula laid open
2016- fistula laid open
2017- seton stitch inserted in fistula for drainage
????- assume at some point the stitch will be removed
When I have asked why they keep occurring I never really get a definative answer, I've been told I've just been unlucky, or it can be hard stools or straining.
About 4 years ago I looked at the symptoms for IBS, IBD, Crohns, colitis etc... and asked my GP whether it could be one of those. He basically laughed at me and said no, so I've never asked again.
This is taking over my life and I think I do have other symptoms:
Diarrhoea, constipation, abdominal cramps (often these make me feel sick and dizzy especially before a movement), tiredness and fatigue (I work but this is all I can do, as soon as I'm home I just flop), skin abscesses around the bottom, I have also had my gall bladder removed, a hiatus hernia; and don't know what to eat from one day to the next, I've had to rule diary out, but too much fresh stuff can set off bowel issues, one day I can eat spice, the next I can't.
The only symptom I don't have is weight loss, but I think it's because I live of carbohydrates at work because I know these don't affect me and doing too much exercise increases the fistula pain.
I'm determined now to question my GP and consultant and try to get them to take me seriously as this is effecting my life. I'm 41 and feel like I'm 81, my employer is sympathetic to a point but because of my sick leave I'm now on probation as per the sickness policy, and because I don't really have a diagnosis of anything they can't treat it as a disability in the workplace. They ask me what they can do to make it easier for me, but every day I feel different and don't really know what they can do.
I would love some feedback as to whether you think I have cause to think I could be undiagnosed, how I can best broach this with my GP and Consultant and what sort of tests I should be asking for.
I apologise this has been quite an essay, let's blame it on the anaesthetic as I'm only 12 hours post op and can't sleep.
It's just been really nice to find a place to plot all this out, I look forward to any response, help and advice.
Vikki. Xxx
06-13-2017, 11:04 PM   #2
cmack
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I love the spoon theory. I can really relate to that.
06-13-2017, 11:10 PM   #3
Vintagevik
 
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I can't stop reading it, will be emailing the link to everyone I know! Xx
06-13-2017, 11:12 PM   #4
cmack
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I hope you recover well from your surgery. Welcome to the forum. I can really relate to you, I've had multiple surgeries as well, lost my job and wife, my young son went with her. It isn't easy. I have had a hard time too. you can talk to me, I'm pretty sure I'll understand most of it.
06-13-2017, 11:21 PM   #5
Vintagevik
 
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It's so life debilitating isn't it?, have you been diagnosed with anything other than fistula's?
06-13-2017, 11:42 PM   #6
cmack
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No, I haven't, unfortunately I am permanently disabled due to surgical procedures so I guess that is a diagnosis. I'm looking to be retrained as I was in the trades before. I had 13 surgeries by a general surgeon and one final operation by a colorectal surgeon. By then I had lost too much muscle from the anal area. I have to do things a lot differently now.
06-13-2017, 11:46 PM   #7
cmack
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I mainly had large perianal abscesses with multiple complex fistulas that were running through both my anal sphincters. I think leaky gut syndrome may have caused it.
06-13-2017, 11:54 PM   #8
Sorebutt26
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Hi Vikki

I'm sorry you're suffering too. I've had a very similar story over the last 8-9 years.
Firstly... ask your GP for a Faecal Calprotectin test. This was the start of my testing. I also had a full blood test and to check my CRP and ERS levels.. everything came back raised so I've been referred to a Gastroenterologist too now. Today I go and see him for a Colonoscopy. I hope this will give me some answers.

Explain everything to your GP, especially how it's effecting your job and your life in general. Your GP may not know much about IBD and the link to Fistulas.

Faecal Calprotectin is a test they use to differentiate between IBS and IBD. As IBS doesn't cause inflammation so would not cause the test to be raised.

Good luck... I really do know how you feel let us know how you get on today xxx

06-14-2017, 12:00 AM   #9
Vintagevik
 
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I feel your pain, literally and spiritually, my current fistula is running through the muscle which is why the seton drain is in , rather than cut and laid open, I will see the consultant in 3 months to discuss options. Good luck with your re-training, I too am having to come to the conclusion whether I get a diagnosis or not, that I will have to re-think my work situation. It's so nice to be able to chat with people who understand. I cannot believe what I have had to become expert in and how my dignity has flown out of the window - how many times have I wished for a broken leg instead! 😂. I've never used a forum before but so pleased I found this one 😊
06-14-2017, 12:08 AM   #10
Vintagevik
 
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Hi Vikki

I'm sorry you're suffering too. I've had a very similar story over the last 8-9 years.
Firstly... ask your GP for a Faecal Calprotectin test. This was the start of my testing. I also had a full blood test and to check my CRP and ERS levels.. everything came back raised so I've been referred to a Gastroenterologist too now. Today I go and see him for a Colonoscopy. I hope this will give me some answers.

Explain everything to your GP, especially how it's effecting your job and your life in general. Your GP may not know much about IBD and the link to Fistulas.

Faecal Calprotectin is a test they use to differentiate between IBS and IBD. As IBS doesn't cause inflammation so would not cause the test to be raised.

Good luck... I really do know how you feel let us know how you get on today xxx
Oh thank you very much, I'm going to make loads of notes and be pre-armed. I've never had a colonoscopy but each surgery has started with examination under anaesthesia and I think I have presumed they have looked at everything, but reading my discharge papers today they have only looked for fistulas. So you've not been formally diagnosed with anything yet either? How long has it been since the start of your testing? Good luck yourself today, and I will be interested to know how it goes. Xx
06-14-2017, 12:17 AM   #11
Sorebutt26
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Oh thank you very much, I'm going to make loads of notes and be pre-armed. I've never had a colonoscopy but each surgery has started with examination under anaesthesia and I think I have presumed they have looked at everything, but reading my discharge papers today they have only looked for fistulas. So you've not been formally diagnosed with anything yet either? How long has it been since the start of your testing? Good luck yourself today, and I will be interested to know how it goes. Xx
Thanks Vikki. Yes I always have EUA at the start of my procedures too, but they only focus on looking at the rectum.
The Colonoscopy today will look at my large intenstine and the scope will be passed in to the end of my small bowel too. They may take some biopsies. I've had one about 5 years ago, but that came back clear.
My testing only recently started, however, I'm really lucky and have private medical insurance. So it's all been a little quicker than it would have done via the NHS. Having said that, my Faecal Calprotectin and blood tests were done via the GP.
XxX

06-14-2017, 12:20 AM   #12
cmack
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I knew I would like you the second I read that you knew of the spoon theory. I read it years ago and I cried too, I think they were tears of understanding and joy that someone else had been there before me and understood how I felt. Somehow it gave me comfort. I wish you the very best. We aren't weak, but very strong, strong enough to face these challenges.
06-14-2017, 12:23 AM   #13
Sorebutt26
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The spoon theory is wonderful. I've shared it with so many people ♡

06-14-2017, 12:41 AM   #14
ronroush7
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Hi. I have a history of fistulas. You might want to try to get a second opinion. Sending support.

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06-14-2017, 11:23 AM   #15
Bufford
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Vintagevik, I can fully relate to what you are going through. I had a similar experience with fistulas, and for my entire working life I simply collapsed due to fatique into the couch the moment I got home from work, went to bed much earlier than healthy people to be able to cope with the upcoming day. These were decades of traversing the valley of darkness
I finally had to get a stoma, I stabilized and took early retirement after the surgery, though I was on LTD (long term disability) first. Retirement has been giving back after a lifetime of misery and daily pain.
06-14-2017, 02:06 PM   #16
Vintagevik
 
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Vintagevik, I can fully relate to what you are going through. I had a similar experience with fistulas, and for my entire working life I simply collapsed due to fatique into the couch the moment I got home from work, went to bed much earlier than healthy people to be able to cope with the upcoming day. These were decades of traversing the valley of darkness
I finally had to get a stoma, I stabilized and took early retirement after the surgery, though I was on LTD (long term disability) first. Retirement has been giving back after a lifetime of misery and daily pain.
I can't believe how many stories there are out there similar to mine, it's almost a relief as some days I feel like I'm going mad and just imagining all this! The fatigue is probably the worst of it, I have no life outside work, because like you, if I do anything extra in the evening then the rest of my week is ruined. I've even tried to trick myself into doing more and told myself that the more you do, the more you can do, ha, that didn't last long! So pleased you are finally getting some relief and quality of life, I dream of the day! Xx
06-14-2017, 02:43 PM   #17
Glockola
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The fatigue for me is worse than the intestinal ones. Because they prevent me from enjoying most out of life. That is when my depression kicked in. Always wanting to sleep and just lay around. No libido left and just feel no joy or appetite. Mentally crushing. And really at this point i just dont see any way forward. I would love to be on permanent anasthesia until they figure out what is wrong with me. Intestinal disease just kicked my whole future into the garbage bin.
06-14-2017, 03:00 PM   #18
ronroush7
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Are you on b12 or iron for the fatigue, Glockola? Have you talked to anyone professional about the depression?

06-14-2017, 03:18 PM   #19
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Yes. But all looks "normal". Still some hair loss and heart palpitations. Total fatigue. I think some mild anemia going on. Maybe from general malnutrition. No flare but constant pain and loose bowels anyhow.
06-14-2017, 03:22 PM   #20
cmack
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I feel for you Glockola.
06-15-2017, 10:24 AM   #21
Bufford
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The fatigue for me is worse than the intestinal ones. Because they prevent me from enjoying most out of life. That is when my depression kicked in. Always wanting to sleep and just lay around. No libido left and just feel no joy or appetite. Mentally crushing. And really at this point i just dont see any way forward. I would love to be on permanent anasthesia until they figure out what is wrong with me. Intestinal disease just kicked my whole future into the garbage bin.
At this point in my life I look back at my younger and middle aged years and feel they were torn from me by this disease and thrown into the garbage. In retirement, I have been picking up the pieces and look back wondering what my life could have been, so many things held back, destroying my career, never raised a child, so much emptiness. My old life looks like a hollow empty garbage can rumbling down the street under dark skies.
Today, I just take the days as they come, enjoying the lifestyle that comes with being older in retirement. Its a speed that I can keep up with, unlike feeling left behind when others moved ahead with life.
06-15-2017, 08:55 PM   #22
Lesli1965
 
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What's the spoon theory?????


06-15-2017, 10:02 PM   #23
More Than Pickles
 
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Glockola: have you had your thyroid tested? I completely understand the crushing depression, the pain and constant presence of symptoms will drain your will to have a normal life. Having said that, don't give up living your best life, finding better treatment options and advocate for your health. Your symptoms sound familiar to thyroid imbalance, which could exist in additional to IBD and is manageable. Sending prayers and positive vibrations your way.
06-15-2017, 10:08 PM   #24
ronroush7
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Glockola: have you had your thyroid tested? I completely understand the crushing depression, the pain and constant presence of symptoms will drain your will to have a normal life. Having said that, don't give up living your best life, finding better treatment options and advocate for your health. Your symptoms sound familiar to thyroid imbalance, which could exist in additional to IBD and is manageable. Sending prayers and positive vibrations your way.
Agree
06-15-2017, 11:51 PM   #25
cmack
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The spoon theory...https://butyoudontlooksick.com/artic...-spoon-theory/
06-16-2017, 11:52 PM   #26
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Vik, sounds like you need a 2nd opinion. I would ask for a referral to GI doctor. And maybe start exploring and reading about diets, particularly Paleo and/or SCD. I know you say carbs don't bother you, but you clearly keep having problems, so I would explore that whole world of diet with inflammatory bowel diseases. I made some uncomfortable changes in my diet and it really helped.
I'm sorry if I missed it, but what meds are you on?
Again, get a Gastroenterologist referral....
06-17-2017, 12:01 AM   #27
cmack
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I hope things get better for you Vikki. I'm here should you need to talk. Best wishes my new teammate.
07-14-2017, 11:07 AM   #28
Vintagevik
 
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Hi all,
Just want to say thank you to everyone who has offered advice, I know I've not commented for a while but I have been in the background reading.
So just a quick update, I've finally got my GP to take me seriously and is now testing for IBD / mainly Crohns; so today have had my bloods taken and a faecal sample submitted! Whoohoo - small steps but it's a start!
I'm 4 weeks post op with my seton stitch and pain has not really got any better, but hoping to phase return to work next week.
Thanks again for your support, I've learnt so much 😁
07-14-2017, 02:44 PM   #29
cmack
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Good luck Vikki. I'm glad you are making some progress.
07-20-2017, 12:03 AM   #30
cmack
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Hey Vikki,

How are you doing? I'm concerned about you bud.
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