Pity party

[littlemissh]

I can usually remain upbeat and remind myself that so many on here are having a worse time, but last couple of days am really fed up.
Because of yet another blip requiring more blood and losing yet more weight, my gastro has not only decided to continue with tube feeding but that I have to have it replaced...ie its going to be sometime yet. I've had it now since november.
I did persuade him to swap to an NG tube so I won't need a scope to put it down but last NG took FIVE attempts and I my nose was bleeding and the back of my throat so sore by the time it was placed.
I've had enough of it all really and of looking like a stick insect.
I just want to be normal, or even almost normal would be nice.
I am not looking forward to next wek when I am having my brand new tube.

Hrrumph, I am turning into Eeyore I think.

 

[CLynn]

I am so sorry you are going thru this. :ghug:

 

[Manzyb]

LMH I am so sorry you are still having all of these problems
You just vent all you want!!! I'll be at your pity party every time

Honestly, I really hope that they get you sorted out so you can go on with your regular life! I've never had to do the NG feedings for that long, I can only imagine how hard that is.

Big hugs from me across the pond.

 

[carolhew]

Little miss, I am so sorry to hear you are still struggling! You can't seem to get a break. Sending you healing thoughts and I am hoping you get a break soon! Hugs, Carol.

 

[Grumbletum]

:hug::hug::hug::hug::hug::hug
Sorry, I'm a complete ignoramus regarding NG tubes etc. Can you have a drink? I mean both alcoholic and non? I know it's probably not a good idea, but I'd come with a nice bottle of wine to share. Failing that, loads more hugs and an always listening ear.

 

[Laura39]

you are not having a pity party. You have every right to express how you feel and what you are going through. Anyone would be upset or frustrated or stressed. I would be for sure. I don`t think any of us are feeling sorry for ourselves when our health is bad. I think we are needing to talk about it and be upset or angry or worried because those are normal human feelings.

 

[Terriernut]

No one has more reason to have a vent than you. You have been through hell for such a long time!

:ghug:

 

[littlemissh]

Don't know why I can't pull myself together.
I think that it's a mixture of frustration and disappointment. Every time I seem to be getting somewhere I have a setback.

It doesn't help that my current tube is getting old so is making my throat and upper oesophagus so sore I can hardly swallow even liquid these last couple of days. And the anticipation of having a replacement next week doesn't help. Yet another trip to hospital, what with seeing gastro every 2 weeks and various treatments/admissions, I never get a break from the place.

@Helen, can drink but not alcohol, in fact not had any alcohol since this started in August 2009! I can stamp my feet though.

Thanks for listening, and thanks for your replies, I'm sure I'll get used to the idea and get on with it.

 

[Terriernut]

They had discussed a possible surgery with you, have there been any further mentions of it lately?

 

[littlemissh]

Surgery is still on the table but as Humira has had some effect and the surgery would be so extreme that they want to give Humira a real chance.
2 of the latest blips have been due to sepsis and this has meant having to withhold Humira for 1-2 weeks each time...this has made the Crohn's get worse each time etc etc.
I f I can avoid infection and therefore keep my injections on time, I may avoid the worsening symptoms.
I just wish my immune system wasn't so sensitive to the immunosuppressants, I would have had less of a torrid time.

 

[Terriernut]

I am wishing you wouldnt be having such a torrid time either!
:yfaint: