Bursting into tears

[iain_t]

Hi,

I've been browsing this forum for a little while now but after a bit of a breakdown today I finally decided to post.

Firstly, before I share my story I just want to say you are all heroes. I've never come across a community so supporting as this one. Irrespective of the stage or severity, every single post has been showered with thoughtful, helpful, encouraging responses. Given the challenges some of you have been through it would be so easy to become a point scoring of whose condition is worse but that couldn't be further from reality. Unrelenting compassion is clearly a side effect of CD!

So about me... In March of 2016 I picked up a bug that I couldn't shake off, I had vomiting which passed after a day or so but the diarrhoea, nausea, reflux, stomach cramps and general malaise just wouldn't pass. After about a month I went to my doctor and was prescribed Omeprazole for the reflux and some anti nausea medication. It seemed to be passing initially but then came back with a vengeance. I became ill again, feverish, tired, nauseous, diarrhoea etc and really struggled. I was given an antibiotic for possible parasitic infection and sent on my way. That still gave no joy and was given multiple blood, urine and stool tests.

One of those was a Calprotectin test, results came back high (600+) which clearly pointed toward an IBD. The lead time for further investigation was long so I did everything i could to control the symptoms as best I could. Minimal sugar and processed food, minimal wheat and no dairy, no alcohol, supplements of aloe vera, vit d, omega 3, tumeric, l-glutamine etc. Just doing what I could to stay as well as possible.

Eventually I had an ultrasound, an MRI, an endoscopy, a colonoscopy and a pill cam, all which revealed very little and so was sent on my way with the probable diagnosis of PI-IBS and high Calprotectin maybe just an ulcer at the time of the test. This is now a year on and still far from my best.

6 months later I decided to get a follow-up Calprotectin test... not quite as high but still 350. I'm now being referred to a teaching hospital in London to help understand what's going on... so I'm now 21 months on after falling ill initially and i'm still no closer to actually understanding what's wrong with me!

So, why now to post.... well the biggest issue with all of this is my mental state. This evening I just broke down in tears. I've been really trying to look at the positives since it happened and put on a brave face to everyone but i just couldn't hold it back any longer. I find so much in life now really hard work, Whether it's doing the chores, seeing friends and family or even going on holiday. Although I try and do things I like, I can't genuinely tell you when I last really enjoyed something. Inside i constantly feel tense and anxious, though with no specific focus of that anxiety. I don't sleep that well and never really relax and i often find I can't think that clearly.

I guess the reason i'm sharing this is I think it's helping me to verbalise how I'm feeling, and because others have been so open too about how they are feeling emotionally. (@MizzSarah and @LaneyLou, thank you for your threads "Always afraid" and "Yeh... I'm fine", they really helped make my decision")

I'm also keen to know people's views and experiences with mental health. I've started to read a lot about the gut-brain axis and, maybe i'm looking too hard for explanations but can't help but feel this holds a lot of merit. Can anyone recommend ways to help manage this stress?

Anyway, enough rambling, thank you to anyone who got to the end of this and thank you for all your comments across all threads on this forum. i guarantee for every poster there are 10 silent readers who are so grateful for your contributions.

Merry Christmas to you all!

 

[Deleted member 431298]

Hello Iain and welcome! Thank you for posting here. I have to say it's one of the most precise accounts of what happens to you when falling ill. I can totally relate to the horror of finding out how IBD changes one's capabilities.
Please believe that things will improve for you. There are several effective treatment possibilities and given time (and probably some trial and error) there is a good chance you can reach a state where the disease is controlled and life gets easier. The most important thing is to have appointed a good GI. Some kind of medical intervention in order to get the calcprotectin and GI symptoms suppressed would be advisable in my opinion. I too, and many others, do dietary changes like the ones you have done, but sometimes we need something stronger.. It seems to me that getting the IBD under control has a tremendous effect on one's psychological well being.

Regarding stress and anxiety, a very good psychologist once introduced me to something called Autogenic Training (AT). Basically a sort of mindfullness, where you run through a specific program in order to allow the body to relax. It takes about 15-30 minutes once you have learned the routines. That helped me tremendously at a stage where I was really distressed, and I still use it once in a while even though I am doing fine psychologically at the moment. I remember being a bit sceptical about it, but I have to say it really helped. It sort of provides a mental break if in a state where thoughts are too many, too negative and tension is building up. (And usually also results in unintentionally falling asleep in the middle of the AT programme, because the stressed body embraces the state of tranquiliy I guess ...)
I hope you will get better soon.

 

[ronroush7]

Welcome and Merry Christmas. If you have some type of hobby, that might help some to distract you so there isnt so much stress.

 

[Sophabulous]

I can totally relate to this, I had a total meltdown last week. I haven’t been hysterical like that in years and I’m totally mortified about it now!

I think sometimes our little pressure cookers just boil over with everything. Having to hide so much for so long just comes to the surface one way or another in the end.

I hope you get sorted soon and merry Christmas!

 

[ronroush7]

I sometimes weep and i think the Crohn's causes a chemical reaction in my brain.

 

[London]

Iain,
Thank you for sharing! I did read your whole story so feel free to rant whenever you need to. I have tried what OleJ said the mindfulness exercises too. I found a website that has the exercises recorded for you. You can google mindfulness exercises. Here is another good article: https://www.helpguide.org/articles/stress/stress-management.htm

Also, I take Epsom salt baths and use essential oils like lavender, chamomile... or try dr teals... it’s great. Soak in a relaxing bath and do the mindfulness exercises. It’s not a fix all but it sure helps!

Keeping you in my prayers!!

 

[London]

Ok found the free website with mindfulness recordings:

http://marc.ucla.edu/mindful-meditations

Hope it helps!!

 

[iain_t]

Thank you everyone for your replies, as reliable as ever
@OleJ, I think you're right about getting the Calprotectin and GI symptoms supressed, I'm sure that has to be the way to go... unfortunately my doctors won't provide any medication other than antispasmodics until they identify the cause of the high calprotectin so I feel very much in limbo.
I will definitely take a look at some of the mindfulness stuff so thank you everyone for providing this info, anything that takes the edge of and lets my mind unwind has got to be worth trying. I will keep you posted with how it goes!
Thanks so much!

 

[erk]

Welcome Iain
I think it's so important to vent and talk about how we feel otherwise it can just eat away at you, I really think it offers a bit of relief from it all. I've only been waiting a few months undiagnosed and it already gets to me, so my heart really goes out to people like yourself and others who have been waiting so much longer!

What you mention about the gut-brain axis is really interesting to me, I also really feel that all these things are connected, it makes sense to me that being unwell affects your mental wellbeing. Also can it be a two-way street? If I can improve how I feel mentally will it alleviate physical symptoms?

Anyway I hope you can find a way to de-stress and relax

 

[nitty]

Hi Iain,

The great thing about this forum is that there is always someone who has 'been there, had that' in any of the various ways that this illness affects us.

Most importantly, you would be very hard pushed to write anything that is 'too much information' - this can be the most embarrassing disease which leaves us with little or no dignity at times. I have a very loving husband, but there are things that I can talk about on here that I would never wish to go into detail with him! To be able to vent about the awful symptoms and experiences we have is invaluable for maintaining sanity, and the support and advice I have found here has made me feel less alone, especially when in a flare and feeling low.

I'm sure by now you'll have realised that we IBD sufferers have our own level of toilet humour - we have to try and find the funnier side where we can or else we'd drown in the tears!

So try to keep finding positives where you can - it's hard, I know - and things will eventually get better.

Take care,
Anita

 

[LaneyLou]

Hi Iain,
Firstly I just want to say thank you for your comments, knowing my rambling helped in some way really has made my day, to be completely honest I'm in a bit of a rut myself so i really do feel for you, I think the expectations and pressures of Christmas can intensify everything. It sounds like your really fighting for answers at the moment. I know that I ended up so desperate for a diagnosis I didn't care what it was, I just needed something official so i could start dealing with it.
I haven't quite figured out how to manage with the stress and emotion yet myself so i don't think il be much help there unfortunately, I'm actually re-starting counselling in the morning (after the first attempt I don't have much faith lol i think I gave the poor woman a nervous breakdown - not intentionally of course!!) What I will say though, as someone who hasn't yet grasped the positive fighter attitude, I sometimes benefit from having a good sulk, get it all out, accept it then brush myself off and get on with life the best I can. Iv always been one to bottle things up and put on a brave face but sometimes you need to be honest with yourself, i also found posting on here to be quite cathartic, i guess its the concept of admitting a problem to be able to deal with it! I know that's hard when the problem is you don't know what the problem is!! I might just have to look in to some of the suggestions your getting tho!!
If you ever need a chat or a vent feel free to get in touch, take care and i hope you have a good christmas!

 

[Squirrel#1]

Hi,

I've been browsing this forum for a little while now but after a bit of a breakdown today I finally decided to post.

Firstly, before I share my story I just want to say you are all heroes. I've never come across a community so supporting as this one. Irrespective of the stage or severity, every single post has been showered with thoughtful, helpful, encouraging responses. Given the challenges some of you have been through it would be so easy to become a point scoring of whose condition is worse but that couldn't be further from reality. Unrelenting compassion is clearly a side effect of CD!

So about me... In March of 2016 I picked up a bug that I couldn't shake off, I had vomiting which passed after a day or so but the diarrhoea, nausea, reflux, stomach cramps and general malaise just wouldn't pass. After about a month I went to my doctor and was prescribed Omeprazole for the reflux and some anti nausea medication. It seemed to be passing initially but then came back with a vengeance. I became ill again, feverish, tired, nauseous, diarrhoea etc and really struggled. I was given an antibiotic for possible parasitic infection and sent on my way. That still gave no joy and was given multiple blood, urine and stool tests.

One of those was a Calprotectin test, results came back high (600+) which clearly pointed toward an IBD. The lead time for further investigation was long so I did everything i could to control the symptoms as best I could. Minimal sugar and processed food, minimal wheat and no dairy, no alcohol, supplements of aloe vera, vit d, omega 3, tumeric, l-glutamine etc. Just doing what I could to stay as well as possible.

Eventually I had an ultrasound, an MRI, an endoscopy, a colonoscopy and a pill cam, all which revealed very little and so was sent on my way with the probable diagnosis of PI-IBS and high Calprotectin maybe just an ulcer at the time of the test. This is now a year on and still far from my best.

6 months later I decided to get a follow-up Calprotectin test... not quite as high but still 350. I'm now being referred to a teaching hospital in London to help understand what's going on... so I'm now 21 months on after falling ill initially and i'm still no closer to actually understanding what's wrong with me!

So, why now to post.... well the biggest issue with all of this is my mental state. This evening I just broke down in tears. I've been really trying to look at the positives since it happened and put on a brave face to everyone but i just couldn't hold it back any longer. I find so much in life now really hard work, Whether it's doing the chores, seeing friends and family or even going on holiday. Although I try and do things I like, I can't genuinely tell you when I last really enjoyed something. Inside i constantly feel tense and anxious, though with no specific focus of that anxiety. I don't sleep that well and never really relax and i often find I can't think that clearly.

I guess the reason i'm sharing this is I think it's helping me to verbalise how I'm feeling, and because others have been so open too about how they are feeling emotionally. (@MizzSarah and @LaneyLou, thank you for your threads "Always afraid" and "Yeh... I'm fine", they really helped make my decision")

I'm also keen to know people's views and experiences with mental health. I've started to read a lot about the gut-brain axis and, maybe i'm looking too hard for explanations but can't help but feel this holds a lot of merit. Can anyone recommend ways to help manage this stress?

Anyway, enough rambling, thank you to anyone who got to the end of this and thank you for all your comments across all threads on this forum. i guarantee for every poster there are 10 silent readers who are so grateful for your contributions.

Merry Christmas to you all!

You have to stay on the Drs. Become some what of a pain. Not where they turn you away but viligant. Get a second opinion. I fully understand where you are at. I need you to blow up their phone. I didn't and almost lost my life. 5 months in a hospital, missed my granddaughters 1st birthday. Now that you have cried it's time to get mad. We have all been in your shoes we know exactly how you feel! I kept being told losing my ability to walk was NORMAL! I have severe Crohn's. I didn't get a second opinion and it cost me everything! I'm not trying to scare you. I just can't the thought of someone else going through my nightmare. Do as much research as possible. Write down every question even bizarre ones. Go to the ER when your feeling terrible. I kept going and going FINALLY I got a Dr that really looked at my history and admitted me 4 days of tests but I had my dx. I hope this helps. Your in my prayers. Good luck. Remember YOU are the one in your body, you know what feels right or wrong. Don't loose Faith.

 

[ronroush7]

Agree

 

[MizzSarah]

Iain,

First of all I commend you for being so brave to post about how you have been feeling. I think that people often forget that with any illness, mental health is and becomes a symptom. There is so much fear and unpredictability.

Most recently I have been been forced to realize that my life will look very different to an average 24 year old. I became aware that I was leading a different life during my early teens(12yrs old) during the beginnings of my medical mystery but as I have aged, I’ve had to realize and give up a lot. I recently was told by my GP that I might have to give up my job because of how progressive my body is deteriorating. It was hard for me to hear because I haven’t even qualified for LTD through my job yet..so what the hell am I suppose to do? People my age are just getting out of post secondary and getting their first job and here I am— already bring prewarned ? How will I be a contributing member of society? not feeling adequate is already my issue and then they take away the only job I will fight through the pain to just do? Anyways—- that’s been something of a plague for me as of late.


My father has had Crohn’s since he was a young adult. His Crohn’s was progressive and has been through 8 surgeries. He didn’t go to college. He could never get and maintain his first adult job. I told my doctor that I want my life to have meaning, not to be another person living on a couch at my parents place.

I try my best to push myself through life as best as possible. Of course I’m still very aware of the cards stacked against me. All we can do is pray for the good days and pray through the bad ones.


If you ever need someone to talk to and rant with I’m here. Trying to find my purpose through the storm.

Hi,

I've been browsing this forum for a little while now but after a bit of a breakdown today I finally decided to post.

Firstly, before I share my story I just want to say you are all heroes. I've never come across a community so supporting as this one. Irrespective of the stage or severity, every single post has been showered with thoughtful, helpful, encouraging responses. Given the challenges some of you have been through it would be so easy to become a point scoring of whose condition is worse but that couldn't be further from reality. Unrelenting compassion is clearly a side effect of CD!

So about me... In March of 2016 I picked up a bug that I couldn't shake off, I had vomiting which passed after a day or so but the diarrhoea, nausea, reflux, stomach cramps and general malaise just wouldn't pass. After about a month I went to my doctor and was prescribed Omeprazole for the reflux and some anti nausea medication. It seemed to be passing initially but then came back with a vengeance. I became ill again, feverish, tired, nauseous, diarrhoea etc and really struggled. I was given an antibiotic for possible parasitic infection and sent on my way. That still gave no joy and was given multiple blood, urine and stool tests.

One of those was a Calprotectin test, results came back high (600+) which clearly pointed toward an IBD. The lead time for further investigation was long so I did everything i could to control the symptoms as best I could. Minimal sugar and processed food, minimal wheat and no dairy, no alcohol, supplements of aloe vera, vit d, omega 3, tumeric, l-glutamine etc. Just doing what I could to stay as well as possible.

Eventually I had an ultrasound, an MRI, an endoscopy, a colonoscopy and a pill cam, all which revealed very little and so was sent on my way with the probable diagnosis of PI-IBS and high Calprotectin maybe just an ulcer at the time of the test. This is now a year on and still far from my best.

6 months later I decided to get a follow-up Calprotectin test... not quite as high but still 350. I'm now being referred to a teaching hospital in London to help understand what's going on... so I'm now 21 months on after falling ill initially and i'm still no closer to actually understanding what's wrong with me!

So, why now to post.... well the biggest issue with all of this is my mental state. This evening I just broke down in tears. I've been really trying to look at the positives since it happened and put on a brave face to everyone but i just couldn't hold it back any longer. I find so much in life now really hard work, Whether it's doing the chores, seeing friends and family or even going on holiday. Although I try and do things I like, I can't genuinely tell you when I last really enjoyed something. Inside i constantly feel tense and anxious, though with no specific focus of that anxiety. I don't sleep that well and never really relax and i often find I can't think that clearly.

I guess the reason i'm sharing this is I think it's helping me to verbalise how I'm feeling, and because others have been so open too about how they are feeling emotionally. (@MizzSarah and @LaneyLou, thank you for your threads "Always afraid" and "Yeh... I'm fine", they really helped make my decision")

I'm also keen to know people's views and experiences with mental health. I've started to read a lot about the gut-brain axis and, maybe i'm looking too hard for explanations but can't help but feel this holds a lot of merit. Can anyone recommend ways to help manage this stress?

Anyway, enough rambling, thank you to anyone who got to the end of this and thank you for all your comments across all threads on this forum. i guarantee for every poster there are 10 silent readers who are so grateful for your contributions.

Merry Christmas to you all!