Heavy bleeding Crohns not diagnosed

[ConfusedCari]

Hi everyone,

I've been looking at this forum for quite a while and didn't want to join until I was diagnosed but something really scary has happened and I just need advice from normal people going though similar events and not horrible doctors who don't seem to care!

I will start from the beginning, sorry I have really gone on.

So I have been having problems with my tummy and bowles since I was 7, when I was 15 I had enough but was told it was hemorids and was too embarrassed to go back - the doctor gave me lactulose but this made me literally go to the bathroom with no warning - I figured I had a weak tummy and just didn't use it. I then went again when I was 18 and was refered to a GI who again told me I just had hemorids and got me an appointment to have these removed. When I went to the surgery they confirmed I infact had skin tags that were removed and a polyp.

At this point I had given up as I was 18 embarrassed with talking about my bum and bowel habits to strangers who made me feel gross. Then about 8 months ago I started getting diarrhoea all the time with an urgency that gave absolutely no warning. I also had the bleeding which had got a lot worse with a few of the other delightful symptoms - pain, night sweats ect. I went back to the doctors who refered me to the GI who said he would send me to be tested for IBD to be honest I had never herd of this and managed to convince myself with the help of google that I had bowel cancer! So on the 7th April I had a sigmoidoscopy where 10 biopsies were taken and I had infra red coagulation on internal hemorids (I had no pain relief or sedation - can someone please tell me if this is normall as I was in agony with the infra red treatment??) went home had a small amount of bleeding which I was told to expect. Then on Friday 13th May (never a good day really!) I had quite a bit of blood with no stools I was worried but my mum told me it was probably from the procedure and I went to work and it stopped.

This is where the scary bit for me comes - on Tuesday 17th May I finished work at 5:00 went for a wee before leaving and bled quite heavy called colonoscopy dept and told them what had happened they told me to go straight to A&E to have this checked out - in A&E had a massive episode with clots - out of embarrsesment like an idiot I flushed the toliet (it took 3 flushed to run clear) I then went to see the doctor and fainted having another massive bleed with lots of clots. I had a blood transfusion 2 pints and was kept in until 7:00pm last night.

I've been sent home without knowing what happened to me and just wanted to know if anyone else had been through something similar?? Also all my stats (blood pressure, oxygen, heart rate) stayed pretty much the same has any one else had this?

I'm sorry this is so long, I'm so confused and scared about this whole situation and think I've quite possible chewed everyone's ear off about it! So thank you for your patience X

 

[TwinkleToes]

Hi Cari,

Thank you so much for sharing your story with us. It takes a lot of courage to open up about something personal (like your health) on a forum.

First, there's one thing that I noticed and wanted to address first. You mentioned a lot that you were embarassed about the things that were happening to you. Please, never feel embarassed about what's going on. I'm sorry that you had a lot of bad experiences with Doctors. I understand what you're going through, because i've been to many doctors who haven't cared. One time, a doctor tried to lance a piece of wax out of my ear, and it hurt SO bad that I started to cry, and he said, "Oh, are you going to start crying now?" I almost punched him in the face.

Anyway, this sounds like a situation that you must discusss with a doctor. I know that you don't want to deal with them, but this is your health. If a Doctor does not take it seriously or know what's going on, keep looking until you FIND ONE that cares. Not all Doctors are horrible, and i'm sure there will be one that you can find that is great. Please keep trying, and stay strong - and I hope you start to feel better soon.

 

[Pirate]

Hi Cari,
Your not alone and its normal to feel embaressed when you haven't been diagnosed yet. Human nature makes us not comfortable talking about excretions. But has time goes on you'll be more at ease discussing it.
I have had a few episodes of bleeding. I have a question. Was it bright red or was the blood more of a coffee color?
I had times where I bleed a lot and it was very dark coffee colored and that was because it came from closer to the stomach. Other times it was bright red and was caused by leisions in the lower bowels. Once was when I was all set to go home from the hospital and the night before I went to the bathroom and filled the toilet with a massive amount of blood. I refrained from flushing it and I pulled the emergency cord to call the nurse. They ended up forcing 4 units of blood into me because my heart was working double time trying to pump blood that wasn't there. My GI did a colonoscopy the next morning and all he could find was a couple of small places that "may" have bled.
In all, the first 3 yrs of my Crohns life I had over 15 units of blood and in the last 22 yrs only 3 and 2 of those were because my heart doctor insisted I take Plavix which is a no-no for most Crohns patients.
Good luck with every thing and remember... Don't feel embaress about what is happening. By not telling some tiny little thing may prolong your diagnoses by who knows how long. Yes, it is embaressing but it is the most important thing you need to deal with in order to get the proper answers.

 

[Grant]

Cari, you need to convince your GP that you need expert treatment from a Gastroenterologist. Sounds obvious I know but really your GP should know this. Incidentally your in London & in Harrow you have St Marks which is "The" Bowel Specialist Hospital.
http://www.stmarkshospital.org.uk/about-st-mark-s

Night Sweats etc are one of the symptoms of Crohns, lactulose usually is given when you are constipated especially because of narrowing of the bowel. But it can be vicious if too much is prescribed. My specialist prefers to prescribe Magnesium Hydroxide(Milk of Magnesia) which is much more gentle.
And dont forget you can get a 2nd opinion if your not happy with what the Doctor is telling you.
Hope things turn around for you
Grant

1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection

Been on Azathioprine & Pred

Currently on Entocort 3mg every other day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs

 

[xJillx]

Hi Cari! I have not been in a similar situation, however, blood is not a good sign and should not be dismissed. Something is obviously going on and it needs to be addressed ASAP. If your current doctors are not taking this seriously, you MUST get another opinion. I know it can be difficult to speak openly about these types of issues and daunting to have to meet with a new doctor, but it is important you do so. Please keep us posted!

 

[Jer's Girl]

I have had so many episodes of filling the toilet with blood and blood clots, it almost became normal for me. But, it of course is not normal and not a good sign. I can't believe they sent you home from the ER after you fainted! I hope you get this sorted honey. Please talk to your GI about it. Sorry you are going through this. Welcome to the forum!