Declined badly. Feel rubbish. Any else similar symptoms?

[marmalade22]

I was diagnosed a little over a year ago after 2 consecutive hospital stays. The first time was calmed down with iv steroids but then I declined when switched the oral and was back in 5 days, eventually leaving when I was successfully put on infliximab. Last January was the only time I didn't see blood.

I only had 3 loading doses as they didn't know if it was UC or Crohns and I was left with 75mg 6mp and pentasa.
All year I have been doing okay. Formed BMs, no abdominal pain, weight stable, active etc . My only symptoms were blood and the occasional mouth ulcers. This increased in intensity throughout the year, escpiecially when my 6mp levels were too high and at the beginning of November it was decided I would start on humira, just to minimise the risk of becoming anaemic. ( my bloods have been perfect all year)

Since then it's been hell. I have declined massively and I am now at the point where I was discharged from hospital a few days ago after being severly anaemic and nothing seems to be working.

I currently
- have been bedridden for almost a month.
-I am on a liquid diet of fortisips and soup and have been for 3 weeks.
- no longer have mouth ulcers due to iv steroids, however I have declined since switching to oral again
-hemmorroids and a fissure which is extremely uncomfortable
-nauseous, lack of appetite, thirsty all the time, headaches

And my main concern is I left the hospital with a HB of 89 after a blood and iron transfusion. And since the I went from having 1-2 bm a day with blood ,to 10 ish bm which are just completely blood and clots. Probably 1-2 of these bm involve stool wether that is watery or formed. The rest can only be described like I am vomiting blood from my anus, where it fills the bowl every few hours. Sometimes I even end up feeling faint for a while after.

I have contacted my nurse and had a blood test yesterday, and I have been expressing my willingness to have surgery for weeks if I need to however I feel like they don't seem to understand how Ill I am. They apparently discussed me today but I have yet to have heard anything. They are saying losing my colon is the last thing they want, and they have got me trying juicing and upping my meds.

I am just completely miserable and feel awful and wonder if anyone else has been in a similar situation. It's not normal to lose this much blood.

I currently on 40mg humira upped to weekly for the past 3 weeks, 50mg 6mp daily and 40mg pred 8 week taper after iv steroids.

 

[DJW]

Hi,
Sorry you're feeling awful.
I wouldn't hesitate to go the emergency department if you're feeling this bad.
If you are thirsty all the time you are likely dehydrated. When I start getting dehydrated I drink pedialyte. It's very easily absorbed in the system.

Please don't hesitate to get help.

Sending you my support.

 

[ronroush7]

Have they considered a specialist? I agree with DJW. I don't know how much blood you are talking about but I once had an abscess that bled for three months. Sending support.

 

[ronroush7]

Hope they find answers soon.

 

[marmalade22]

I've been trying to keep my fluid intake up by having 3-4 litres of water a day as I am really aware of becoming dehydrated. And I had a flex sigmoid last week while on hospital and as far as I am aware they didn't find any abscesses. My colon from as far as they went however was continuously severly inflamed my crp was 40 on admission (although I have been 140 before) but that reduced to 9 two days before discharge. I also don't really have intense abdominal pain just aching all day, and pain and urgency when i need to get rid of the blood that's seems to have been storing there every couple of hours.

 

[Axelfl3333]

I think I would speak to your doctor and lay it on the line how bad you feel.they have to help