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Ulcerative Colitis
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Posted 5/15/2017 4:33 PM (GMT 0)
Hi All,

Just come back from my first appointment with my GI following a colonoscopy i had in March during which my GI was going to prescribe me oral mesalazine until I explained the reaction to the enema I had and so carried on with steroid enemas instead.

Today's appointment I went in prepared with a list of questions about all the different types of treatments etc well all my questions went out the window! He asked how I had been and I explained that when I had tried stopping the enemas the bleeding has returned, I still have cramping etc. He proceeded to talk about mesalazine and how when you have a reaction to the enema you might not always get the same reaction from the oral version (which I already knew thanks to the advice I've received off you all on this forum). Then he said what I wasn't expecting; the biopsies were indeterminate or inconclusive and I needed to stop the enemas and go in for a sigmoidoscopy when my symptoms worsen, bleeding etc. He explained that he could treat me but prefers to get an accurate diagnosis first which is strange because he was going to give me oral mesalazine straight after the colonoscopy I had in March. I could kick myself because I got so upset at that point because I've waited 4 months since being hospitalised and 2 months after the colonoscopy to be told I've got to stop the only thing that is stopping me being very ill, to get ill again so that he can take some more biopsies and hope that they don't come back inconclusive again. (Sorry for venting but I just feel like I'm headed back to how I was in January again without getting anywhere confused).

I do understand and appreciate that I need to have an accurate diagnosis but it is frustrating that I have come away with nothing really only the horrible prospect of stopping the enemas and getting ill again, having a sigmoidoscopy and more biopsies and waiting another 8 weeks before knowing if I will have an accurate diagnosis or not. He was very vague when I asked what the biopsies come back with and he just said there is abnormality but it doesn't say what type. Type of what??

The following were the results from my colonoscopy report in March:

"Normal rectum and sigmoid, but a patch of inflammation in the splenic flexure, an area which the predsol enema could not reach.

Splenic Flexure:
Patchy Erythematous Mucosa
Patchy Granular Mucosa
Multiple erosions with no bleeding"

Just wondering if anyone else has had a similar experience when being diagnosed, any advice etc?
Posted 5/15/2017 4:55 PM (GMT 0)
Well....it's obviously not UC, so indeterminate seems to be a term maybe for undecided? But for IBD that isn't pathogen, microscopic or other that can be diagnosed, sounds like CD.

I understand your exasperated frustration....had that many times with various doctors.

Why the enemas if no inflammation in the rectum or sigmoid?

q
Posted 5/15/2017 5:37 PM (GMT 0)
Thanks Quincy. I'm not sure he has ruled out UC, he said that the enemas probably healed the rectum and sigmoid but couldn't get to the splenic flexure when he did my colonoscopy.

What's more is the enemas help a great deal, they stop the bleeding and pus almost immediately and ease the cramps a great deal. When I stop the enemas the bleeding comes back so its got to be in the sigmoid / rectum as well I would have thought otherwise why do they ease symptoms.

He was just very vague today and I didn't get any answers....

Maybe he is struggling to determine if it is uc or cd like you said?
Posted 5/15/2017 5:50 PM (GMT 0)
emedicine.medscape.com/article/183084-differential

Bookmark this page and do more research....create another list 😉

When did you start the enemas in time-wse to the c-scope?


q
Posted 5/15/2017 9:39 PM (GMT 0)
Thanks Quincy, that link is really helpful. Definitely doing more research! Good idea to start another list 😉

I'd been on the enemas about 3 weeks before the colonoscopy. I was told I'd have a colonoscopy within 2 weeks of being discharged from hospital in January but as time was going on I was getting worse so my General Practitioner decided to start me on enemas otherwise I would have ended up back in hospital. It was over a month before I had the appointment through for my colonoscopy.
Posted 5/16/2017 12:50 AM (GMT 0)
If you did not get your list answered then call in your questions. Most doctor's offices have a assistant murse who will take any questions you have and bring them to your doctor, and get back to you with answers.
Posted 5/16/2017 11:51 AM (GMT 0)
So I called into see my General Doctor this morning and she printed off the biopsy results for me to give some more clarification as I left yesterday's appointment not even knowing if I had been diagnosed with IBD.

The biopsy report results are as follows:

"Clinical Details:
? Half treated L sided main inflammation in splenic flexure

Microscope:
A: Transverse colon - normal large bowel mucosal pieces
B: Descending colon - large bowel showing crypt architecture distortion, paneth cell metaplasia, there is mild focal acute cryptic is. No crypt abscesses, no granulomas, no parasites. The lamina propria shows excess diffuse chronic inflammation with basal cell plasmacytisis.
C: Sigmoid Colon - Normal colonic mucosal pieces, save for a mildly oedema to us lamina proprietary.
D: Rectum - Normal rectal mucosa pieces

Conclusion:
Focal active colitis in the descending colon with features of inflammatory bowel disease "type not specified". Clinical and endoscopic correlation required."

Bearing in mind that the GI was convinced it was left sided UC when he performed the colonoscopy and that healing had taken place in the rectum and sigmoid due to the predsol enemas from reading the above I still feel that it is ulcerative colitis as opposed to crohns but then I'm not an expert! Just reluctant to go and have another scope only to get the same results because it may have healed somewhat by now. What's more is I'm frustrated that the results are dated the 30th March and only yesterday the Consultant has provided me with them and a suggested course of action I. E. Stop treatment and another scope......

Can anyone shed any light on the above results from experience? Grateful for any info as this is still very new to me.
Posted 5/16/2017 5:42 PM (GMT 0)
Sure, I can help translate.

1.) Starting at your rectum, it is 100% normal, with no signs of IBD. No Signs of inactive-chronic illness and no signs of active chronic illness.

2.) Next on your left-side is your sigmoid colon which mostly looked normal. They did find edema, which is medical jargon for inflammation, shallow within the large intestinal wall. It could be from your prep for that scope. It could be inflammation from UC.

3.) Next on your left side is your descending colon. Here they saw "crypt architecture distortion" and that is a sign of IBD, and specifically of UC. A normal large intestine is like waves on a pond with high points and low points. The crypt is the low-point or valley between the wave peaks. The crypts are of particular interest in UC diagnosis as it is nearly always usual for us. You have cryptitis which is inflammation of the crypt and it is just in an area (not continuous). Paneth Cell Metaplasia (PCM) is known to be a sign of IBD both in active UC and non-active UC. No crypt abscesses is uncommon with UC inflammation as usually present. There's no granulomas which is common with Crohn's disease.

4.) Next is your transverse colon which goes across your abdomen near the belly button. 100% normal.

5.) The Ascending colon (right-side) was not examined.

6.) The terminal ileum (where small and large intestines join) was not examined.

There's UC, Crohn's, Crohn's-Colitis, and Indeterminate-Colitis within the IBD umbrella. I understand the idea of the healed due to enemas theory, however, the biopsies from the sigmoid colon and the rectum would still indicate chronic-inactive-colitis or other permanent, architectural changes in that case. Yet, the biopsies from those regions state it's normal. So, I'd wager you have Crohn's-Colitis, see what the doctors say. I say that as UC is continuous from the sphincter up the large intestine and yours is not. Crohn's includes skipped areas, which is what they are describing. It's likely Crohn's-Colitis as it is limited to the large intestine. You did not have a full colonoscopy all the way up to the terminal ileum (where large intestine and small intestine joins) and crohn's often has terminal ileum involvement, so I guess Crohn's cannot entirely be ruled out. Certainly the biospies did not have crohn's attributes (no deep tissue inflammation, no granulomas).
Posted 5/16/2017 6:10 PM (GMT 0)
It's great your GP made available your results. You obviously do have IBD given the results....what kind is still in undecided because it doesnt follow the pattern, but the results of biopsies show change in architecture and lamina propria in yhe descending that follow UC common histology.

With rectum normal with no architectural changes even showing from chronic inflammation and sigmoid more or less just congested and swollen with no inflammation or showing architectural changes ...it could have healed slightly, but still does not follow the pattern of healing and so quickly and nothing left to show it has.

You weren't any oral meds were you after that scope?

q
Posted 5/16/2017 9:50 PM (GMT 0)
Ipoop and Quincy I would hug you both if I could! Your translation is what I needed and is more information than I received from either my GI or my General Practitioner so thank you.

I left my appointment yesterday questioning the logic for stopping treatment and going through with another scope. I can see from what you have explained that there is ambiguity and that yes, I probably need to have another scope to see if it can produce some clearer biopsy results. However, if that scope produces the same biopsy results I am not going for anymore invasive procedures and will be asking for treatment. The impression my GI gave was that I cannot be given treatment unless a clearer diagnosis is made. Well, if the biopsies taken don't provide clearer results I can't do much about that and I will still need treatment for my debilitating symptoms as far as I am concerned....

Quincy, no I haven't been on any oral meds, my GI was going to prescribe me oral mesalazine the day that he did my colonoscopy but because of the reaction to the mesalazine enema he said best to stick to the prednisolone enemas until diagnosis.
Posted 5/17/2017 12:03 AM (GMT 0)
Keep up with the treatment and treat symptoms. Wait on another scope. IBD is for life, they'll be many more scopes in your future and time will differentiate what you actually have. There's no hurry. In the end its just semantics, UC/Crohn's/indeterminate-colitis/Crohn's-colitis, and the treatments are all very, very similar.
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