Months Of Pain After Surgery. Can´t Anymore. Please, I Need Help

[tokyonochikatetsu]

Dear people of celiac.com,

 

(sorry for my English, not a native speaker)

 

I realize you might think I should not annoy with my problem here and that I am an idiot, but I really feel SO painful and desperate and don´t have anything left (even the energy to do anything else), so I am giving it last chance and posting here my ´calling-for-help´ letter.

 

I do not know what I should do because noone cares since I am a rare medical case and I think that only those people who experienced immunology-related hell in their lives can truly imagine what it feels like and would understand I am not making things up.

 

Can you recall the anxious feeling following your accidental glutening? That feeling ´oh my f$#%ing God, somebody has poisoned me!´? ..That several days lasting brain fog and fatigue and not being able to do ANYTHING except from lying in your bed and suffering?..And all the pain?..

..well, that´s exactly what I have been dealing with for 4 f$#%ing months (!) now...and can´t anymore..the pain is destroying me and I am going to kill myself in the next few days if nobody is going to help me.

Because this is torture..

I want my life back so badly.

Physicians in my country won´t help me, saying ´externally you look just fine, there is nothing wrong´...well, can´t fight this..

 

My story below: (Thank you very much for reading it, I appreciate it. If you knew about anything or anyone who could help me, please, let me know.)

Thank you for reading this. Any help is appreciated. Sorry for the mistakes, I am not a native speaker.)

I needmedical help. And I need it soon.I do realize I am going to sound crazy, but I am not a psycho. I do have a problem and do know exactly its cause. My immune system is slowly killing me. Foreign substance in my body is causing me hell. Being desperate becuase no doctor in my country that I ́ve contacted has been willing to help me. Because my problem might be quite rare (or maybe not many sick people realize why they feel sick with no  ́objective ́ sign) and they think I am just making things up (why would anyone do that?!).

I underwent a surgery  5 weeks ago. It was an esthetic surgery. I have never had ambitions to look  ́perfect ́.  Because I think  ́looking great = feeling healthy ́. So it was  ́well-founded ́, trust me. (No, I do not have breast implants.And I have a poodle-like nose thatI don ́t want to be operated because I like it.) I am 25 years old, medical student. I do not feel the need to write down here my personal drama so that someone could say they feel for me or to hear what an unfair world we live in. No way. I am going to write down the following sentences just to finally convince someone of the fact I do have an organic problem.

 I haven ́t lived much yet. For 24,5 yearsI felt horrible.I used to feel so tired that even walking round the house was like a marathon to me. I felt exhausted and depressed 24/7. As a child I didn ́t have many friends. People around me thought I was  ́the weird girl ́. I did feel the difference myself. I was very sorry that I could not enjoy the usual things in life like other people did. I felt no joy. No passion. I felt like a machine only. Pure depression.I did not know why I had to felt that way. I started tobelieve I was just born that way and had to either suffer for the rest of my life or end it up myself (yes, I DID have these feeling so many times in the past before I found out myself what my problem is, so that I also visited a psychiatrist myself –after months of taking the ADs, it was only worse)...I was teenage, with no friends, no positive feelings and no energy. The times my classmates were partying outside, I was at home, staying in bed, thinking I should better die. Then, one day, I  realized the only moments I feel at least a little bit better, is when I am starving for someperiod oftime. Thisallstarted up the whole way to  ́oh my God, oh my God, I DON ́T have to die after all, I can feel great too! ́ feeling. I am convinced I have celiac diseaseand that not treating it for 24,5 years caused I am allergic to pretty much everything (except fromthefoods included inmy diet), probably due to leaky gut (?). My grandmother had the same feelings and the same problem and I think so has my mother. Unfortunately, having the blood test done, my immunologist said my antibodies are  ́quite low to have celiac ́ and that I don ́t even have diarrhea, so that I need to go away and stop annoy. Noone cared I did have neurological symptoms and my abdomen looked like if I was expecting quintuplet. So I told myself I need to help myself. It was a long journey until I found out not only the gluten is my problem. Once I eliminatedall the food substances that were giving me problems, I started to feel like a  ́normal ́ healthy person, being just happy to be, having energy and so on. After 24,5 years! What a feeling! I can remember the tears of luck.. So yes –I do know I have allergies (I do have the typical allergic reaction followed by almost all the vasodilatation-linkedsymptoms), but I do not have it proved in the lab. (Because there was no need for me to do that once I found out what the problem was and also because I might get the same falsely negative results as many people before and no doctor in the future would trust meI really do have problems afterseeing that). And there are not many physicians (at least inmy country) who believe  a person might have reactions tooils as well (safflower oil and castor oil for me). But give me a lipstick with safflower oil in it and I ́ll show you how it sets me offfor 3 days (my classmates and people around me might tell you about...)..no lab-tests needed  So now to the problem I have. I can feel my body is strongly fighting the inner  ́absorable ́ stitches that were put induring the surgery. I think I am allergic to them (after all that stuff I have had to go through, I know perfectly what my body tells me). Or simply let ́s just say my immune system has a great problem with them (with the polyglycolic acid maybe? Or maybe even the metabolics of it?). I know they are supposed to dissolve on their own in months, but 

1)I know many people have problems with stitches not dissolved properly even after years.

2)I simply can not wait with reaction like this.And it is NOT about being mentally hypersensitive! This is torture.I am only lying in my bed, sweating even when it is cold, having the most horrible brain-fog, feeling like Im going to faint all the time..etc.Even my friends are scared seeing what is going on.2 days ago my flatmate even had to call me an ambulance because I had difficulty breathing and one of my pupil was twice the size of the other one. I swear I felt (like so many times in the pastin the  ́before ́ period) like if I was going to die. And you know, when you are experiencing this physicall problem, you simply arenervous –which only leads the doctors to say  ́it ́s just you being way too sensitive mentally ́ -hell, it is the other way around. And once they write you into the documents your blood pressure was low, but not low enough, you are entering the viscious circle of nobody believing you..3)There are other people out there who had problems similar to mine.My surgeon refuses to get the stitches out (which is understandable since externally my wounds do not look thatbad) unless I have a document from a laboratory proving I have reaction to the material. The problem is I haven ́t found any workplace testing this! And my condition really is unbearable and I don ́t know what to do now. I am also scared to death once they would reopen me, I might be sensitive to the anesthesia, as it would be the second contact with it..(I also need to find someone who can make it safe, please –someone with knowledge and experience in this field.)(And yes, I DID have reaction immediately after the material contacted my body because I will remember for the rest of my life that as I came from anesthesia, I thought I was going to die. I could not breathe, I could not speak well, my brain (head felt) like swelled.I know it is usual to feel  ́just off ́ after anesthesia, which is understandable, but this was not this case!I was SO scared. Of course, the personal told me not to be overacting and to stop annoy the staff because  ́my blood pressure was 

just fine ́ -well, if you have to fight allergies for 24 years, your body does develop some compensatory mechanism that is trying to keep you alive. -I think this combined with all the fluids I got during the surgery kept my blood pressure  ́just fine ́. But I DO know I had severe allergic reaction. From that moment I am feeling bad.I am not blaming the doctors, of course. I just need help.I was told I have Safil and Polysorb material in my body. But who knows if it is not also anything else. The surgeon was not that sure. As for surgery itself, he is a great surgeon. But for any other field of medicine, as for me, he just would not care. Saying  ́it is only in your head ́ to anything you say. If all the physicians you meet tell you things like  ́well, ok, let ́s say things like thesemight happen, but it is only like in about 3% people ́, there is no way to convince them of the fact YOU might also unfortunately bethe part ofthat 3%. Well, as for the genetic-jackpotI won, it was not my decision..Before the surgery, I used to be a happy, always smiling,nice girl with lots of energy and ambitions. I LOVE life. I want to help other people and just enjoy that great feeling of  ́happy to be alive ́ that I used to feel. But now I feel like dead already. I do not even have the energy to cook my dinner or simply to do anything except from staying in bed and staring to the ceiling. Like if someone poisoned me.I have some great friendswho know who I really am (and thus these people know this is just real).But I know I am not going to hang on like this much longer. Because I feel so horrible. I do not want to have to hurt myself but I can ́t simply ́live ́ this way any longer.And you know, I already feel like dead.This is like being trapped. And I can ́t anymore.Please, someone help me and get the stitches out of me. I am willing to do anything for that so I am able to save my life. As a future physician/scientist, I can help many people. And I want to help so much. But first I need to be helped. I still hope there are some people left in the world who are not judging just by  ́only the things and feelings that I ́ve experienced are those that might be real ́. I feel so sad about the fact there are so many people out there who are called  ́psychos ́ or just feel horrible just because of cause similar to mine. We need to do something about this.If you know anyone who could help me, please, let me know!As a med student, I really do not have any money left, but I will get them somewhere to save myself. So money is not the main problem.

Please, do not let me suffer.

Thank you very much

M

[ravenwoodglass]

Is the surgery you had what they in the states call 'plastic surgery'? If that is the case there are some doctors who have a TV program here called 'Botched'. You could look them up on line and see if they have any advice or can help you. Other than that I have no ideas but someone else here may. Good luck and I hope you are feeling better soon. Try to hang in there as I am sure many in your life love you and want you to stay here. 

[knitty kitty]

Here's an article that might help:

Open Original Shared Link

I have Celiac disease and other food allergies. I react very badly to anesthesia. It is an anticholinergic reaction.

I have had anticholinergic reactions to anesthesia for abdominal surgery and even for numbing at the dentist. It made me feel irritated, crazy, depressed. I understand. Hang on for a while longer. It will wear off in time.

Your stitches will be fine. Take vitamin d3 to promote healing. Breathe deeply and repeat "I'm getting better with every minute that goes by." Your body just needs time to get rid of the anesthesia. Be patient with yourself.

[jiggles]

Hi Tokyo ,

I don't doubt for a minute that you are reacting to something and you know your own body best ,

But you have only been gluten free for around five months is that right ?

Just wondering how are you are managing to look after yourself whilst you are feeling so poorly ?

what are you eating and drinking ?

You have suffered 24.5 years of eating gluten ,

all those years of gluten damage can take quite a few years or more to heal your body ,

You have just had an op and a full anaesthetic whilst your poor body is weak and trying to recover from years of gluten damage ,

No wonder you feel so rough and no wonder your poor body is reacting to lots of things ,

Your body has been through so much , but it will get better , but you have to take good care of it and allow it lots of time to heal ,

Lots of us on here who are healing , react to lots of other things ,

many other foods and intolerance's can develop whilst we are healing ,

but the good news is that after healing , lots of us manage to get those foods back again , and most of us don't get such bad reactions to other things , once we have healed ,

Tokyo ,

You also sound like you may be having typical gluten reactions too ,

( the awful anxiety is a classic symptom ) so is sweating and feeling cold , dizziness is another ,

there are lots of us who get typical reactions through gluten exposure creeping in somewhere or through cross contamination ,

Even very experienced celiacs can slip up eating something they shouldn't ,

some of us get awful symptoms with oats ,

Also lots of us cannot tolerate dairy until our villi have healed , usually it takes a couple of years or more before introducing it again ,

I know that you are a medical student and you probably know a lot more than I do ,

but gluten can often cloud our minds to the point that we simply cannot see what's happening to us because we are so fogged up ,

Those stitches could be causing a reaction ,

Plus your body could still be very sensitive until it heals a lot more ,

I have just looked around the internet and a lot of people say they have had reactions to these type of dissolvable stitches too ,

But first things first ,

you really need to get stronger and get your strength up so you can think up a plan to get some help with those stitches ,

We will help and support you on here ,

many of us on here have not been believed by doctors about our symptoms until we have become very anaemic , skeletal , or very damaged and mal nourished ,

although in the past "our symptoms" were all that they had to go on , to diagnose celiac disease,

I sometimes think going by the symptoms was a better way to diagnose celiac disease ,

you will need some good food to help your body to heal and your mind to cope ,

Perhaps you can plan to do an online shop , and get some good food delivered , frozen fish is good,

just rinse off the water glaze first , pop them in oven bags or foil in a hot oven for twenty mins or so until until juice is absorbed ,

I do hope that made sense ,

Please would you go through what you have been eating and drinking on here with us ,

as it could be something like cross contamination issues ,

Also ,

whilst you are getting better , (and you will get better ! ) just eat plain whole foods

what God put on the earth in its purest forms ,

fresh meat , fresh fish, fresh veggies , fresh fruits, just have some plain Jacket potatoes microwaved

Eat them with the fish for now, they are nice and easy ,

or boil up some fresh bone broth this is very good for healing the digestive system

and for the time being stay away from gluten free factory foods and grain foods ,

Just until you heal more and start to feel a bit better , don't eat dairy or oats either ,

drink lots of plain fresh water for now

Hope that made sense

Ps ,

proffesor Hadjvassilou helps with neurological problems caused by gluten , he is in the NHS Sheffield hospital ,

you would need a doctors referal note

Open Original Shared Link

[tokyonochikatetsu]

Thank you all for your time and words. I appreciate you are trying to help.

 

Well, I´ve been on the diet for almost 1,5 yrs now! And prior to the surgery I already felt perfect! Had no problems at all. 

 

I never eat junk food and I eat REAL foods only. There is no chance for cross-contamination. My GIT is doing fine and have no problems with the diet or nutrients. My diet hasn´t changed and my problem is not related to eating.

 

My mother has been experiencing the same problem (reacting to foreign object put into her body during a surgical procedure) - and scheduled for the explantation. Well, since it is not ´common stitches´, surgeons are willing to admit she might have problem with it. Since they have not seen anyone having problem like mine with ´stitches only´, noone cares..

 

The longest sleep I had in the last 4 months was for 4 hrs...as the pain is so horrible that it won´t me let sleep any longer.

 

Breathe deeply and repeat "I'm getting better with every minute that goes by." / Ehh, can´t do that as I am not getting better AT ALL. I feel EXACTLY the same as the first few hours post-op! No improvement at all. I simply can not tell anything like this to myself. I feel horrible. 

And it has nothing to do with the anesthesia. I was given inhaled GA and it´s already out of my system.

 

And sadly I can NOT ´hang on there longer and wait´ as the pain is so crippling that the only thing I´ve been doing is staring to the ceiling.

I am not even able to read a book how my body is messed up..

 

This is hell.

[ravenwoodglass]

Are you sure nothing in your surgery was messed up? Keeping up the search for a surgeon that may help you may be your only option. I wish we could be more helpful for you. 

[jiggles]

Hello Tokyo , we all want to help you , it's not right that you should be suffering like this ,

Does this surgeon have an email address ?

if we can email him too and ask him to help on your behalf as your suffering so much ,

he should not be able to just brush this off anymore ,

Desperate times call for desperate measures ,

Please let us try and help you , I know we live in different places but we all truly feel for you ,

X x

[tokyonochikatetsu]

Thank you all. It means SO much to me that you want to help! <3

Well, sending an email to my surgeon would be useless right now, as I was at his office yesterday and he refuses there are people who had problems with stitches and that ´there are no people whose stitches didn´t absorb in the timeframe (56 to 70 days max.) that the producer gives´..he won´t try to reopen me unless I have a proof there are stitches left (well, let me point out I DO get his point of view of course..it must be tricky for him as well..it´s a miserable viscious circle of suffering!)..well, to my saying ´I know about people who had problems with the stitches and their (not)dissolving in the past´, he just says ´any shop assistant from a grocery store might write that on the internet and I won´t take that valid unless it´s on pubmed etc.´

 

Well, I feel like a shell left only. The problem is I physically don´t have even any energy left to do any research now. I don´t think I might suffer even more.

I can´t sleep. 

He sent me to MRI (which could not prove any immunological problem anyway) with waiting time 2 months.

I am just a burden to my friend at this point and do not want to be a burden for anyone anymore.

 

Except from the horrible physical pain I am also experiencing this Open Original Shared Linkwhich is even more crippling.

The brain fog is UNBEARABLE. 

To my social and whatssoever suffering, he only adds ´there are many people out there who don´t have any life´..what can I add?

 

I dont want to die, neither do I want to wait suffering like this anymore.

[kareng]

I am sorry for your suffering.  Have you considered that maybe he is right?  Maybe it is something else? I would hate for you to miss the problem if it is something else. 

[ravenwoodglass]

Can you get a second opinion from another doctor? In the US it isn't unusual to request a second opinion when the first doctor can't figure out what is wrong. I agree with Karen that you may also have something else going on that is being missed. 

[tokyonochikatetsu]

UPDATE! This is warning for everyone suffering from many allergies..Please, check your vitamin D levels!

I´ve found out I am SEVERLY vitamin D - deficient. There was a period of time in the last month when I had the chance to spend more time under the sun and I felt so better! I could eat almost anything and did not have any problem. However - this lasted only several days..now I am back to that old situation..bedridden, crying out of pain, feeling like dying..I´ve been supplementing with oral and topical vit. D3 but it doesn´t help anyhow. (Quite the opposite)

I am desperate, wishing only for the possibility to get to a sunny place asap. There is going to be no sunshine in my country in the next week.

I do not know what to do. I am all alone in a forest. All I want is to feel healthy again. I wish there was someone who would come to me and help me out of this. But with no money and noone helping me with travelling by my side, I can only wait for the end

[ravenwoodglass]

They make full spectrum lightbulbs. Perhaps that might help? I don't know if they would help with D production but might be worth a try. Sorry you are still suffering so much and hope you get some relief soon.