Waiting for results :(

[Lisajj]

Ive suffered with diarrhoea on and off along with cramps for years but it became alot worse a couple of months leading up to me needing my gallbladder plus lots of small stone removed. It was almost constant, within an hour of eating for a few months, settled down and then flared up again. For 2 years it was thike this but since May this year its become alot worse. If I can get to the toilet immediately Im not too bad but if Im out and have to hold it, therefore suffering horrendous cramps for half an hour or so then this really drains me. I have bled in the past but I put this down to piles. Sometimes its really watery, othertimes its greasy like. I cannot say which foods make it worse, I try and eliminate but one day a food that makes me ill can be ok a few weeks later. After being on imodium for 2 years (!!) my GP referred me to a consultant whom I saw within 6 weeks (NHS) and with 3 weeks Id had an endoscopy which looked normal (not had biopsy results yet) and yesterday I had a colonoscopy which showed the following........
Mucosa, patchy congestion, erythema, and granularity at 2, 2 being the Caecum, also said Caecal inflammation and very symptomatic. Multiple biopsies were taken and Im going to be seen in clinic next month.
The doctor present at the colonoscopy asked if this had been ongoing which it had. Bloods were normal, not anaemic. Im tired and have painful joints, mainly hips, legs and ankles. Im not on any medication and am almost 43. Also last month I lost a stone as felt so ill.
Does anyone have any idea what this could be? Thanks for reading!

 

[Crohn's 35]

Hi Lisa :welcome: You seem to have the classic signs of IBD. I had my gall bladder out and had gall stones and kidney stones, and that is enough to deal with. Diahreah is very common in IBD but try not to use Imodium. BRAT diets (banana's, rice, applesauce, and toast) and normal diets are low residue for other times.

I could be Crohns or crohns colitis, or colitis. They have found something and hopefully they get you on medications soon. Keep us posted on your findings. Good luck.

 

[Lisajj]

Bananas, rice and hard boiled eggs seem ok, toast some days, well, stays in half an hour lol. At first I thought it was the tub of catering marg at the snack bar was the cause but even with real butter or flora I was running! Imodium no longer work, my gp told me to take codeine instead.
Im so relieved they actually found something as has been getting me down so hopefully Ill have some anwers soon.
Thanks for writing back

 

[xJillx]

Hi Lisa! I agree with Pen, sounds like IBD to me based on your symptoms. However, biopsies might be inconclusive, so don't be discouraged if you don't get immediate answers. However, you are certainly getting closer.

Keep us posted!

 

[Lisajj]

so what exactly do you think it is? im sure its not ibs, never have any probs/pain til i eat....what inflammation exactly i wonder?

 

[DustyKat]

Hi Lisa and :welcome:

IBS doesn't cause structural changes to the bowel, which you have.

As the others have said, the symptoms you describe well fit IBD.

Have you had bloods drawn for B12, Folate, Iron Stores and Vit D? If not I would suggest that you request they be tested. You can still have a normal haemaglobin and be anaemic as the body will draw on your iron stores.

Good luck!

Dusty. xxx

 

[Lisajj]

Hi, according to my gp,and the receptionist (!) my bloods have all come back normal. I saw the GI sept who ordered the bloods and scopes saying they would be 8-10 weeks NHS and he would see me back in clinic in jan however the scopes were done within 3/4 weeks of me seeing him and at the end of the colonoscopy the doctor doing it said I needed to be seen sooner so requested a nov appt. Other symptoms are Im tired, always need a siesta but put that down to being awake with joint pain alot during the night (which i put down to getting on abit now, 43 tomorrow!)

 

[DustyKat]

If it is possible request a copy of your results. Your doc may have been on the ball but the bloods I mentioned aren't routinely tested for.

Dusty. xxx

 

[Lisajj]

No colon biospy results so rang docs secretary whos just rang me back. She said after speaking to the consultant he doesnt needto see me before my January approintment as results are clear....Im gobsmacked....after the colonoscopy showed caecum inflammation, granularity, erythema, mucosa and pathy congestion then isnt there anything wrong? I eat and most times run to the loo within 40 mins and have violent diarrhoea. I feel sick some days, have achy joints and am always tired. The lady doing the colonoscopy said it looked like an IBD and anothe doc present asked had it been ongoing and one wrote on the report I was very symptomatic. The secretary just asked if I had taken imodium??? Erm yes for the past 2 1/2 years but even 8 aday no longer did anything and thats been since June. I cant stop crying, my lifes been awful these past few months, dont eat out and dont eat if I have to go anywhere just in case... Ive lost 1 1/2 stone in the past 6 weeks and even after a coffee yesterday I was ill. Im sat here in tears and feel so sorry for myself but I also feel like they must think Im a fraud but I have the report with their findings...

 

[Crohn's 35]

Hey Lisa, just letting you know that a diagnosis can be very hard to get. It isnt fun when they tell you it is all in your head or there is nothing to be alarmed about. I have seen my colonscopy results and have ulcers, they dont look like much but whoa, pain I have suffered from time to time. I am thinking you may need a second opinion, you are intitled to it and sometimes fresh eyes are a good thing. You have had great advice here, I would suggest you push your doctor and now. I had to and go a dx as soon as I saw another teaching specialist. Good luck.

 

[Lisajj]

bile salt diarrhea??

http://www.gihealth.com/html/education/bilesaltDiarrhea.html
been to see the doc and asked him could it be bile salt diarrhea, to me this seems right...hes writing to the consultant to ask what else he can prescribe...theres something called Questran that is supposed to be really good so fingers crossed...

 

[Jessi]

Hi Lisa, and welcome.

Sorry I don't know how to answer your question. Perhaps asking in the Undiagnosed Club, you could maybe get some comments on it.

http://www.crohnsforum.com/forumdisplay.php?f=75

Have a look. You'll find tons of support here. :hug: