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CFMBabs

Following The Thread On Choking

12 posts in this topic

I suppose it's not news to anyone that I have a Peg tube in situ. The reasons I'm sure you are all familiar with -- I've gone on about it enough to bore you all to tears!

Today I've had a visit from the Speach and Language Therapist -- for reasons I couldn't quite grasp? Anyhow it turns out that my rheumatologist was worried about my choking episodes, something which has just dawned on her since I've been telling her about it for almost 3 years! To cut a rather long and boring story short --- She came to see me this afternoon. The short of it is I've been advised not to eat or drink anything no matter how desperate I become. It's true that I have a mere morsel at times and drinking is at best quite difficult but not to attempt to do either is asking a little bit too much. It's taken me over 2 years to get this far. At first I was unable to consume anything and then slowly I managed to drink a little, then eat maybe a biscuit ( cookie ). I'm not asking too much here and I've worked myself up to 2 biscuits in one go! The fact of the matter is -- I'm refluxing! The stuff I manage to get down isn't actually going down completely and it's finding it's way into the lungs hence the numerous chest infections and irratating cough that has plagued me for the best part of the year so far. The SL Therapist decided I should no longer take anything orally, so there's me Stumped!

I suppose the choking episodes are frightening and it's in my own best interest not to be fool hardy and 'normal' But I hate the thought of going back to square one where I syringe liquid through my tube and rely solely on the horrible sticky liquid that I infuse daily. I love the freedom of a biscuit -- you can go a long way with just one digestive. It's a release from the heavy rucksack I need to carry round with me and I can look normal for a few hours without looking like I'm going on a mountain trek. How do I socialise without drinking anything? I have coffee whilst the others drink beer and I've just realised how terrible that is.

Her leaving words were " If you continue your ways you'll have chest infections upon chest infections and I guess we'll just have to keep treating you with antibiotics" What a choice! Give me a biscuit any day!

 

Best wishes

Barbs xxx

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Hi Barbs, I'm so sorry to hear your having such a rough time. You definately seem to handle all of this quite well, your amazing. I would be beside myself, not knowing what to do. I have all sorts of problems with my GI track, slow motility and reflux and constipation big time. I can still eat, but I definately suffer most of the time. I sure hope you and your doctor's can come to some solution. Good luck to you and try to stay positive. I know that is so hard at times, but what else can we do.

 

Jackie S.

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Oh Barbs,

 

I can't imagine what you are going through right now. Hopefully, through support and friendships you can get through this time without the cookies and drink.

 

Maybe if you take a break from the foods and drink you can set aside one day where you treat yourself. Have a little to drink with friends and maybe a small bite to eat. You will savor every moment I am sure! :)

 

We are here for you!!!


*WestCoast*

 

********

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Barbs,

I am so sorry to hear what you are going through. I can't imagine not being able to eat or drink anything. I love to be able to crunch on something once in awhile. I was just talkiing to my husband the other night about the good ole days when I could eat whatever I wanted and have no bad side effects. Pizza at midnight, to bed at 1a.m. and no problems. I am still able to eat so I can't began to know how you feel. I do know that sometimes I don't want to eat because I know the pain that will follow. Take care and I send good vibes your way!

:D

Nan

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How frustrated you must be with this news. Are you allowed to drink anything at all -- water, for example? I understand the psychological reasons for wanting to eat a digestive, but are there things you could suck on or chew on that you didn't have to swallow, just to get the feel of something tasty in your mouth? Hugs to you, sweetie.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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###### Barb,

 

This breaks my heart. I do remember you had a tube. That must be so difficult to deal with. I love food so much I can't imagine not being able to taste food at all.

 

You as always are an inspiration to me, with your positive attitude and outlook on life.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Barbs,

 

I was really down on my motility today and lately until I read your thread and what you have to overcome is monumental. I can only get one meal a day down and last night was really having issues with reflux all because I wanted an ice cream at 9pm. I was depressed Monday over the whole thing and so proceeded to cook. I don't what you do but somehow I try to redirect what I have lost.

 

So I was thinking how you overcome such a social thing such as eating and drinking completely. I may have to face this someday so I am really thinking. Somehow you must replace that huge thing in your life with something that can make you feel as good. I don't know but maybe taking up art or gardening or kayaking. Something to take you away . Maybe everyone around you (meaning close to you and who know what you like ) can help in coming up with ideas.

 

I think your wonderful inner being is the only thing that will get you through this and reading your past threads, you are strong. Also, I think you have a keen ability to write. Your poetry in the past has been great. I wish you all the thoughts I can. Susie54

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Hi Barb,

I hate to hear what you are going through, I love food so much, I have no idea what I would do if they took that away from me!!

 

You said something about a Speach and Language Therapist Today my G.I. called me about my chocking and said I need to have another Barium Swallow followed by the Speach and Language Therapist . I was told she will want to see me swallow thing to see how I do. I guess what I am trying to say is you are never alone in this, like it or not, you have all of us!! ( now I want to break out in song...".We are family" lol)

 

Good luck and hugs,

Patty


Hugs,

Patty

 

If Life hands you lemons, make lemonade.

 

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

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Barb, are you able to chew food then enjoy the flavors and spit it out in a napkin? When you are home and just family around have you ever tried that? How do you take medications? If you can't really swallow is there a port in your food sac to put let's say thyroid meds or pain pills? No WATER. Unheard of.

You are so awesome girlfriend. You keep our spirits going. How is your husband and daughter? I haven't heard you mention them lately. Are the renovations complete? Too many questions for one post. You are in my thoughts. Sheryl


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Oh, Barbs,

 

This is just utterly awful. I'm sorry that is certainly not uplifting but hearing someone tell you no food or drink or else you will keep getting lung infections and have to keep having antibiotic treatments is just really not what a girl wants to hear!

 

You will have to tumble this about in your mind for a while in order to come to some sort of terms with it. This disease brings us so many challenges. I will wish you the strength and energy you need to deal with this as you have with the other less than *fun* situations lovely sclero has brought your way. All the best to you, dear.

 

xoxo emmie

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Dear Barbara

 

I can so relate to your feelings in regard to wanting to eat. I eat very little atm custard, icecream and soup is about the limit. I still cook great meals for the family I just no longer get to participate in the eating of it so I tend to do dishes so that I dont feel so bummed out about it. The family are getting used to it but it's hard when we have family lunches and you end up feeling left out as you sit in the corner with a drink and not much else.

 

I have severe reflux up to 150 episodes in a day and it has damaged the sphincter valve and my throat and at this point minor damage to the lungs.

 

I found comfort in your post to know I am not alone in being unable to eat and knowing I am not the only one who struggles with the whole idea of it would be better if you didn't eat

 

Take care and warmest hugs

 

My heart goes out to you

 

Sharon


Kindest Regards

 

Sharon

 

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

 

a little bent and broken and almost beyond repair!

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######! I hardly know where to begin. Thank you so much for all your kind words of encouragement -- it kind of makes me blush!

I've painted a very gruesome picture of my life and I have to be honest and say that although it seems terrible you just adapt! If I said it wasn't difficult then It would be a bare face lie -- you wouldn't want to see me on a bad day! But on the whole my life is very good. I have a tremendous supportive family who treat me normal, like nothing is wrong. In return I act as if nothing is wrong. I still cook, still socialise and above all do my crying in secret. I'm really not after sympathy here I'm just trying to admit to you that I may seem tough skinned but actually I'm a softee underneath.

I'm through with hospitals and always doing what I'm told because it's not always the best thing for you personally. I hate water anyway, never drank it even when I was able. I ate too much in the past and I guess the upshoot of this is I have a figure to envy and I can wear all my daughters cast off's so I've never been as trendy.

As for the noneating issue. if I look back over the past 2 years to a time when all this was new to me, I thought my life would never be the same again and the thought of not eating was too much to take in. I decided right there and then that if I valued my life and the life of my family it was no contest -- I had to adapt. The result is, my daughter thinks I'm hip, because I wear her clothes and my hubby has gotten closer to me because he now fancies this new slender chick! He knows that I can eat a little ice cream and a little square of chocolate and if we go out for a meal he always orders 2 meals with an extra plate for me. He doesn't make a scene and I just pick. I think it's been harder for my family for sure but we've come through it and it's just a new way of life.

Last year we went on holiday to Greece -- don't get me started on Greece! At first I was very concious about the tube which protrudes some 8 inches from my abdomen. I wore tankini's which were in fashion last year. The top of the swimsuit covered my tube and all was well until I got back to the hotel. I looked as if I'd been tattooed -- completely white then brown around my neck, brown down my arms but white line where my straps had been -- I looked a mess. The next time I went I asked my dietician to cut the tube shorter and then I could put a plaster over it but she told me of a little girl who made a pouch to put hers in. I thought, "Right, that's what I'll do." My daughter made me an elasticated pouch which I then put my tube in. I wore a bikini for the first time!

I guess the moral is -- where there's a will there's a way! And Y'know that's all you need.

 

I'm doing fine so please don't worry for me. I appreciate all your concerns and your support means a lot to me. Keep strong and take life as it comes, we only have one shot at it so make it good!

 

Best wishes to you all.

Barbs xxx

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