One HELL of a walk

[catfud]

one HELL of a walk

I was feeling a bit sluggish at work so decided to get outside into the fresh air and have a walk into town. This usually helps but today it was a bad idea. I was walking through town when I began to feel light headed and dizzy. I decided it was better to get back to work and have a sit down. A simple 10 minute walk turned into total HELL.

My stomach was in total AGONY I could barely stand, my hands and legs where shaking, my head was spinning out. I so badly wanted to just drop to the floor into the fetal position and cry. I just kept thinking "any second now my body is just gonna collapse" I just had to take real deep breaths and keep placing one foot infront of the other and fight it all the way back to work. I was on my own, I wish there was someone there that could have helped me.

It's so difficult to pretend everything is ok when it isn't. I'm now completely physically and emotionally drained. I want my bed.

:depressed:

I'm still shaking, I'd go home but it's easier to just rest at my desk, I don't have the strength to travel home.

 

[Agent X20]

I agree about seeing the doc... that sounds a bit severe to me

 

[catfud]

I'm on pred and pentasa at the moment. I had a really big meal last night which I enjoyed for once! I've also had plenty to eat all day today. I now have numbness in all of my face. My doctor is supposed to be ringing me with the results of the small bowel meal I had recently but I have not heard from them. I will give them a call.

This does feel out of place compared to my usual flares. My poo is solid and regular when usually I have really bad dioreah and urgency. I'm suffering with really bad stomach pains.

This started to slowly improve after being put on the meds but has gradually got worse over the last few days today was the worst its been in sometime.

 

[MINI Cooper]

you sound like you're in a similar situation to me.
Pred isn't working like it should be.
Definitely talk to your doctor.

 

[catfud]

Yeah when i was on pentasa years ago it really screwed me up i figured since it had been many years id give it another go. I said to my nurse when they put me back on it that I didn't get on at all well with it and she said my doctor had advised it was the best med for me. Tried ringing the doctor and was left with the usual an answer machine, to which i left a message for a call back. I feel **** on meds, I feel **** off meds but at least I can think straight off meds.

Its just been a bad day, its the weekend, I can tuck myself up in bed all day tomorrow.

 

[soupdragon69]

Hey Lee,

Not a good feeling or position to be in eh?

Pentasa caused my asthma to deteriorate last year to the extent I ended up in A&E in a hurry and 5 days in hospital so take care!

Sounds like you are really really depleted of everything at the minute. You have been ill for so long its going to take you some time to rebound honey as you simply have no reserve at all.

Definately harrass the doctors and make sure you have an urgent review. You simply cannot cope as you are. I totally understand the weakness and draining you felt and it just saps you dry doesnt it. When you said it was easier to sit at work than the journey home it said it all.

I have days where all I can do is curl up. In fact have just spent the last 24hrs or so like that as I nosedived again and my GP increased my pred and put me back on antibiotics on thurs so have been wiped out again.

But you, like me will get there. Get on to your medical team and dont take no for an answer! They arent living with it YOU are!!

((hugs))

 

[Ataraxia]

I'm in a similar position with the walking thing... I walked to town other day- a simple 10 min walk- and my legs were shaking and I felt extremely light headed. I have only been out of hospital however, and was in there for 3 months and my legs were pretty much out of use. Do you walk much?

 

[catfud]

I usually go for walks and isn't generally an issue but it seems that this weekend onwards my health has nose dived! I spent pretty much all weekend in bed. I've got a really big apetite at the moment and I'm constantly craving food which is a good feeling. The problem I'm having is everytime I go to eat something I get really pains in my stomach, to the point where I just have to go lay down. This has gotten worse as the weekend has passed. I've left yet more messages on the god dam answer machine requesting a call back. I really don't want them to increase my pred I've only just gotten out of the manic and insomnia stage.

I'm annoyed because my apetite had just started to kick in and I was loving food again and eating big meals and starting to feel so much better. Something just feels out of place compared to my normal flare up I have an appointment for mid december but I want it moved forward. Now all I need is to actually be able to get in contact with my doctor! :ymad:

soupdragon69

Thanks for the hug it goes a long way Sorry to hear you have had to have your meds increased. I hope to good is out weighing the side effects. ((hug))

Ataraxia

I hope your legs start getting better for you soon and glad to hear you are out of hospital.

 

[catfud]

UPDATE:

Just spoken to my doctor (finally!) and they gave me the results of my small bowel meal. It turns out I have a narrowing causing abstruction. I've been advised to drop the pentasa for the time being. They haven't increased my pred (yet) I'm almost certain they will increase it if this doesn't stop in a week.

I genuinely do not believe that increasing my pred of dropping the pentasa is going to help this. I'm totally not feeling a pred increase.

Does anyone have any suggestions of anything liquid ish based that I can eat/drink to give my insides food, but a bit of a rest? The only thing I can think of is soup lol.

 

[Ataraxia]

Do You really need to be on the Pred? Since I was discharged they're slowly working me off the drug because if I come off it straight away then I'll apparently get really ill. I hate that drug. From all the stories I've heard (mainly side effects) it causes more harm than good...

 

[MINI Cooper]

I've got a partial obstruction (among other things) myself, but
ensure never works for me. I always throw it up. The Pred also picks
up my appetite, but doesn't seem to do much else. (Kind of frustrating
when you feel like you're sitting in the hospital with drugs that aren't
doing a fricken thing.) I see Pen suggested to look into Remicade or Humira,
that's where I am going next also if the pred doesn't start doing something
miraculous soon...something to talk to your doctor about anyway, if you
can ever get a hold of him!!! What a pain! :voodoo:

 

[catfud]

The pred has helped clear some things up but side effects are a total nightmare, I've been gradualy reducing the dosage each week. I'm at a point where I can sleep, I don't feel like a total scatty brain crack job and it's not hitting me with heavy depression. They want me to stay on the pred to reduce inflamation in the narrowing, so hopefully I will be able to eat without pain. They have said my CD isn't as active as it has been in the past, and this is definately the most pain I've experienced. I feel like the pred is doing its job fine. My stools have been regular and well formed with no urgency, but the narrowing is still causing me pain.

Pred is making me sooooo hungry all I can think about is really massive huge nice tastey mmmmmmmm meals. Too bad I can't eat any of them!!!! The more i think about it the more I want it, the more I want it the more I think about it hehehe.

I'm just gonna have to keep my diet simple, follow their advice for the time being and see how I feel / what they say next week. I will also ask them about Remicade or Humira.

Thanks for the support and advice all!

 

[Colt]

I found the prednisone side-effects other than the self-image killers went away once I got myself completely dependent on the crap. I was really bad off at the beginning with everything from muscle weakness to vertigo. Always fun walking down the hall at work and constantly veering to the right and running into the wall as the administrators gawk.

Then as soon as those went away (a month or two) I forgot to take my prednisone one morning and found out really fast that I have a new concern: Miss my prednisone in the morning and be in the ER in the afternoon. Luckily I managed to get my wife to bring my prednisone to work for me just in time to avoid passing out.

I was a mess. I had just reached the point where I had to stop working for the sake of patient safety. I couldn't stand up straight, my hands were trembling and I was shaking like mad, I couldn't even get my damn gloves on let alone handle a needle. It's kind of frightening being that dependent on a drug. I don't know how heroin users can live with themselves.

Don't let me scare you though. Like I said, I had really bad side-effects at the beginning and they went away with time. Now as long as I take my pills I'm just fine. The only side-effects I have left are the ones that make me feel like a fat, hairy, pimply slob.