Recently diagnosed- Indeterminate IBD

Hi,

I've recently been diagnosed with indeterminate IBD. My symptoms have been going for three years- rectal bleeding/ dark red blood/ bloody mucus with or without bowel motions and going 5+ times a day. At my worse, I am going every one and half hours. Recently (in the last year) I developed ongoing fatigue, joint pain, low potassium and elevated fecal calprotectin levels (230ug/g plus). After a postive p-ANCA test and ulcers found on colonoscopy I was finally diagnosed with IBD. Unfortunately, they could not tell me wether it is Crohn's or UC at this stage, but my symptoms, ulcers and family history more suggest UC. Recently, I have also developed black mucus that looks like coffee grinds. The entire process has been difficult, exhausting and an emotional roller-coaster, but I have a great GI and am thankful for his expertise. I am currently on 3.2g of Asacol/day, 1g Pentasa enemas at night and 40mg of Prednisone, tappering at 5mg/week. Has anyone else had a long lead up to their diagnosis and a final diagnosis of indeterminate IBD? If so, what were your symptoms? Does this disease get any better?

So sorry you are still going through alot of symptoms!! It does get better, it may take some trial and error with meds and such but it does get better. I don't have alot of advice as far as the meds except how long have you been on the pred? For most it is fairly fast acting. I know some start having symptoms again as they taper and have to do a slower taper or go back up a little on the pred. I'm not real knowledgeable on the pentasa or asacol although there have been studies that show they are more effective with UC I think some CD'ers have found they have helped. Is the GI aware of the black coffee ground mucus, if not you may want to update him on the change just so he is aware. I'm not familiar with that symptom but I think in the beginning the GI should be updated on any symptom changes. I truly hope you are able to achieve remission soon!!

Hi Clash,

Thanks for answering so soon. I feel really alone with this disease and have had to quit Uni, be off work etc for the past year. I was started on the pred two weeks ago and noticed an immediate change in my symptoms- now no blood, going less times a day. My gastroenterologist put me on it mainly due to the black mucus and blood. Mainly, I feel very emotional with the pred, but would rather be on it than go back to how things were. I see you've been recently diagnosed as well? How long did it take to go into remission? I started the Asacol back in June, but have managed to have active symptoms again recently.

It isn't me that has CD but my son, he was diagnosed with CD in March of this year and went straight on Remicade with a stint on Pred while awaiting remicade appt/ins approval. The pred didn't lessen the inflammation for my son, his is located in his terminal ileum. The remicade has been really awesome, symptoms subsided shortly after the first loading dose and now we are just trying to figure out the best dosing schedule as 8 weeks between was a little too long.

I'm glad you are seeing some results with the pred, for most people it does work really quickly. I remember the side effects with pred were awful for my son and he was quite moody and emotional while on the higher doses. As you taper, the side effects should start to subside some. Asacol might not be the right med for you or not at the right dose etc. Where is your IBD located, asacol is from the meslamine class of drugs and there are several drugs in that class each designed by time release at different areas of the GI tract.

I can't say that my son is in remission yet since we still haven't gotten his dosing schedule figured out but he is symptom free right now and we are thankful for that.

Hi Clash,

The ulcers were located in my sigmoid, descending, ascending and tranverse colons. Luckily, they were small, but there wereapthous ulcers. I als had six polps removed (hyperplastic ones). My rectum also had chronic inflammation, but they could find no evidence of IBD there. Its good to know its probably the steroids that are making me feel negative! I feel sorry for your son. I hope he is doing well!

Oh yeah the pred can cause negativity but if it continues especially after the taper and since they dx you as indeterminate IBD might not be a bad idea to get all your vitamin levels checked. I know chrohnies are commonly deficient in D, B12, and a couple others. Now with CD this is partly due to malabsorpton in the terminal ileum which isn't of course where yours is located but you can never be to safe!

I have been diagnosed with indeterminate colitis the surgeon said it was the worst he had seen so I should of expected it really but was hoping I was going to be wrong. Hope it gets better for you. What's the next stage for you then? x

Hi Cheerbear,

Thanks for your message. In a strange way I feel better that someone else is not enjoying the ride that much either. At the moment I'm on steriods/Pentasa enemas/Asacol and seeing where that goes. My GI is doing a care plan with me when I see him in two months. They have assigned me an IBD nurse I can ring at any time. Its been quite hard because my case seems to be atypical, a lot of tooing and throwing as to what I actually had- but I'm now under a very experienced doctor, so thank goodness. It took so long for me to get through the system as I was stuck over in colo-rectal for over 12 months. In NZ we only get access to colonoscopies when it is quite bad.... and they initially thought I had glandular fever (tested positive for EBV) and internal hemorrhoids. Gradually it got worse and worse and my tests started turning up funny results. Now I'm here ! How has yours gone? Did you start off OK and gradually get worse? Or have you found the treatments good?

The treatments never worked for me was on really strong steroids-Prednisone, pentasa, infliximab, metronidazole etc. was in hospital for 2 days short of 6 weeks eventually had to have life saving surgery to remove my large bowel which could of burst at anytime which could of killed me. They said mine was definitely "Fuliminant IBD" atypical as well. They tried to diagnose me during surgery but it was so bad they had to send it off too Gloustershire bowel pathologists and they diagnosed me with indeterminate colitis. It was a very severe flare considering I had only suffered 4 months with it can't believe how quickly it got severe. The next step for me is too get my rectum and anus removed and make my ileostomy permanent I can't take the risk with my diagnosis. x

Wow CheerBear - It seems you have been really put through the wringer! Are you working now? I can't believe how quickly this disease changes. My disease was quiescent and then within one month, my fecal markers were back up, I was bleeding again, running to the loo and in pain! From my research, I've seen IC can sometimes have a particulary bad and aggressive clinical course. It seems like yours is very severe- and it is hard to know what to do when it is indeterminate, and has that additional risk of complications. For me, I find the fatigue and feeling sick all the time quite a pain. Before this, my husband and I managed a large set of motels in the tourism industry and I was a bundle of energy!

Yeah I'm working now thank goodness they were brilliant. I have been through the wringer lol just hope they sort you out soon:/ it's no fun being in pain and suffering let me know how you get on. I've got to go bk November tell them my decision and get put on waiting list for this next op-.- :O hope the meds start working soon big hugs xx

Thanks for your support. I hope things go well for you too. Good luck with your surgical appointment!

Thanks I'll need it lol let me know how you get on xx

Hi there and welcome A few suggestions:

1. With that fatigue, get your vitamin B12 levels tested and make sure you're maintaining proper hydration levels and electrolyte levels.

2. With the low potassium, I'd suggest getting your magnesium levels tested too. Low potassium can be caused by low magnesium and people with IBD are commonly deficient in magnesium.

3. You may want to discuss the idea of taking the Prometheus IBD SGI Diagnostic with your doctors. It may help them differentiate which type of disease you have. That's important as your current treatment regimen might not be enough IF you have Crohn's once you come off the steroids. While increased pANCA typically points to UC over Crohn's the data, depending on the study, is: UC patients (30%-83%), CD patients (6%-20%) and controls (2.5%). The nice thing about the prometheus test is it tests a variety of different markers and genes.

4. Another idea would be to request a capsule endoscopy so they can see if you have any active disease in your small intestines. The dark coffee ground stuff has me a little concerned that there is disease higher up.

Hi David,

Thanks for your reply. I will ask the Gastroenterologist about all of these. He sounded pretty alarmed by the dark blood/mucus when I rung him- which is what got me on the steroids. I also have upper stomach pain as well as pain along my left side (which I know is from the existing ulcers), so I'm guessing it could be higher up as well.