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UC on two different parts of the colon? Is this normal to start with?

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Posted 7/8/2015 9:39 AM (GMT 0)
Hey folks,

I'm a female in the mid 20s and was diagnosed with "colitis" less than a year ago. I've been finding this forum extremely useful so far and I have a question that I can't find an answer to and seems really strange.

Basically I started getting blood in my stool years ago, I thought it was just hemorrhoids since I had no pain or any other strange symptom and there wasn't much. As time went on the bleeding got worse and worse, the doc still thought it was hemorrhoids or a fissure since no other symptom. Then after a while the frequent BMs started(5-10 per day and would stain the toilet deep red every time), the mucus started, urcency, pain, weakness but no diarrhea or constipation. I was referred to the hospital who put me on a 7 week taper of pred and permanent 2x pentasa tablet and 2x pentasa suppository after a sigmoidoscopy showing lots of blood and inflammation. Things were great and worked instantly, but when I got a colonoscopy it revealed I was inflamed in two different spots, big patch at the very top of my colon, and one big patch at the very bottom at my rectum but NO sign of inflammation inbetween. The biopsies came back showing that it was more like UC than crohns.. but I thought UC wasn't patchy? They're unsure so they're just calling it "colitis" for now.

As for how I'm doing, unfortunately after a good few months of very little symptoms I'm in the middle of a flare again which has been a lot more painful than last time on my backside, I can't even sit after a BM. Also I'm starting to get diarrhea frequently now too. I started pred yesterday and it hasn't worked instantly like it did the first time either. I'm really scared this is just going to get worse and worse. Strangely.. my psoriasis came back at exactly the same time, the pred got rid of that too.

My question is: Does this look like the start of panconlitis? Perhaps since I was on pred when being scoped some parts of the bowel had healed themselves? Or does this look more like crohns?

Any advice would be greatly appreciated. cry
Posted 7/8/2015 9:45 AM (GMT 0)
I was diagnosed in 2004 with "patchy ulcerative colitis" and you're right, this is unusual, and more typical of Crohns, however my biopsies backed up the UC diagnosis. As the years went by (maybe five or 6 years later) the diagnosis changed to pancolitis. I think my Gastro told me that I possibly always had pancolitis but with patches that were more prominent, and other areas that were only detectable at a microscopic level.

The diagnosis is definitely pancolitis now.
Posted 7/8/2015 9:53 AM (GMT 0)
Thank so much for the fast reply.

Have the meds you use now given you relief/remission long term?
Posted 7/8/2015 11:18 AM (GMT 0)
With hindsight, if I could go back to when I was first diagnosed I would do things differently. I was frightened by the lists of side effects on medication and even considered mesalazine based medication "risky". I'd worry about the potential risk to my kidneys. I wish I'd been more compliant with mesalazine based meds in the past. I've taken them for long periods but also had breaks.

On the other hand pretty much every single one of my flare ups has lasted 5 to 6 months regardless of what medication or supplement I did or didn't take. They seem to burn themselves out regardless. The only med that gave me an instant next day remission was Cyclosporine but it came with many side effects and is definitely not a long term solution.

One of my biggest problems over the years has been debilitating fatigue even when in remission. This makes sense because my immune system seems to be up the spout and working overtime, which uses energy.

Mercaptopurine / 6MP made it worse, possibly because I have a low TPMT enzyme. I suspect it works well for people who have a high TPMT enzyme result.

It's early days for me on Humira but I am happy to have more energy. It is easier to get out of bed in the morning and I'm not waking up with sore glands in my neck at the moment. Long may this last as fatigue has been such a problem for me, to the point where I would consider surgery to "get my life back".

So fingers crossed Humira will work, but if not I think I may have reached the end of the line with meds, and might have the op, like some of my family members (UC runs in my family, along with ankylosing spondylitis and other related diseases).
Posted 7/8/2015 11:25 AM (GMT 0)
If I could give advice to anyone who is recently diagnosed I'd say take the mesalazine every day without fail! Don't be afraid to take it because it has few side effects and may prevent UC worsening. Looking back I have been silly worrying about and fearing each step up in medication. As long as you are closely monitored with blood tests and trust your instincts you can stop taking something if it's not working out for you.

As I said in an earlier thread I refused to take Azathioprine for two years before I ended up in hospital and the choice was taken from me. Although Azathioprine and 6MP weren't the right drug for me I needn't have been so afraid of taking it!

To answer your question on remission, the longest I've had is a 2 year remission, but people vary so much that one person's story will be very different from another's. I haven't been the most compliant about taking medication.

The usual trigger for a flare up for me (again, different for everyone) is a viral infection, specifically the one that starts in the throat and gets into the chest ie a respiratory virus. Stress doesn't help bring on remission, but I don't think its the trigger for me.
Posted 7/8/2015 11:27 AM (GMT 0)
The other piece of advice I'd give for someone newly diagnosed is to keep a good eye on your vitamin D levels and take Vitamin D3 supplements where necessary.

Post Edited (UCyousee) : 7/8/2015 5:31:03 AM (GMT-6)

Posted 7/8/2015 11:38 AM (GMT 0)
I have a very similar story to you. I started bleeding in 06 or 07 and the doctor told me I had a fissure. I kept bleeding and finally went back to the doctor and he said the same thing. I finally went back a third time when I started getting more of the symptoms, mostly like you describe.

I had inflammation from 0 cm to 25 cm and perfect right after. I had a patch of inflammation at the top, the cecum and a little below that in the ascending colon. I was diagnosed solid UC. I had a blood test done and it came back as Crohn's disease. The two GIs I had seen at the time both ignored the test and said it was wrong. Well, six years later my diagnoses is definitely Crohn's disease, although my disease behaves more like UC by far. Bleeding is my predominant symptom, with a little mucus, softer stools, and increased frequency, but not much. Mostly just blood.

The most interesting thing is the blood test I had done measured seven different, antibodies, I guess, in the blood. The only one of the seven I was in the Crohn's direction for was one with the description of being present in people with "UC like Crohn's disease." At that is exactly what it seems I have UC like Crohn's. It really seems to me like I, and quite possible you have something that isn't really either CD or UC but something very similar and possibly even described as in between the two.
Posted 7/8/2015 11:53 AM (GMT 0)
I had inflammation up to the sigmoid and then a patch in the cecum. All my biopsies came back as UC and I had a blood test that was negative for Crohn's disease and "might suggest" UC.
My dr said it is not that uncommon to see inflammation at the cecum with UC even though it isn't the "norm." My grandmother had Crohn's disease so I am always asking my doctors questions about it.
Take the 5Asa's, they help me a ton.
Posted 7/8/2015 12:34 PM (GMT 0)
UCyousee: I'm so sorry it sounds like you've been through a hell of time. Don't blame yourself, I've been really good with the pentasa and haven't missed a dose yet i'm still ending up in a flare. =/
I'm getting fatigue problems AND I get sore swollen glands on my neck too which they're claiming as unusual. I wish you the best of luck with Humira. At least if you do have to get surgery you'll be symptom and drug free. I'm currently taking vit D + calcium supplements thanks to some of the advice I've seen on this forum. Thanks so much for the information and advice.

Levi: Woah our symptoms and situation really do seem so similar! You don't have inflammation in the rectum right? It's definitely that part causing me the most pain and issues. I just checked my report again and it says inflammation in caecum and rectum up to 27cm

momto2boys: Yep the pentasa was working well up until recently. Even doubling up to 4gram did not help unfortunately but I'm hoping it calms down again with the pred. Thanks so much for your reply. It's reassuring to know I'm not alone and it might not mean I'm doomed to get pancolitis. Yep apparently theres been 2 cases of crohns in my family but none of UC.
Posted 7/8/2015 1:26 PM (GMT 0)
Donkers: Oh, ha ha, sorry! I hope my post didn't come across as "poor me"! As UC (and AS) runs in my family (with the other family members having a question mark over whether they had UC or Crohns for years due to the atypical patchiness) it is something I can accept as being "normal" for my family.

I don't consider myself to have a bad case of UC when I compare my story with that of some family members and some other UC patients :-) There's always someone better off and someone worse off in life.
Posted 7/8/2015 1:42 PM (GMT 0)
UCyousee: Don't worry you didn't! I asked and I really appreciate you sharing your experience(and im genuinely so sorry you've been through so much cause of it) as it might be something I have to deal with down the line. I like being prepared, instead of being suddenly hit with horrible news that it's spreading/getting worse. I have a feeling it might, since the doctor at the hospital sorta dodged the question "does something like this usually get worse?" probably so I didn't worry, haha. They just told me it WILL more than likely flare eventually and to contact them ASAP when it does.

Yeah I could imagine some folks go through horrible experiences with it. =/
Posted 7/8/2015 2:08 PM (GMT 0)
Donkers, yes rectal inflammation is the hardest for me to control. In my first flare the GI told me it looked like raw hamburger meat and the rest looked great. (the ascending colon inflammation only showed up via the biospies, it was not visible during the exam.)

And another similarity....I'm 31 now so I was about 23 when I first started seeing the blood.

Post Edited (Levi) : 7/8/2015 8:11:08 AM (GMT-6)

Posted 7/8/2015 5:03 PM (GMT 0)
Levi: ohhh I see I misread, you have same places as me pretty much then.

lol raw hamburger meat. I was awake for both the sig and colonoscopy and had to look away from the monitor cuz it made me feel sick(especially the sig when I hadn't had any meds for it yet)

Thanks a bunch for the info! Do you ever have complete remission? and do you flare from time to time?
Posted 7/8/2015 5:36 PM (GMT 0)
It's not normal....unless it's extended from the cecum and spreading downwards and in the rectum and spreading upwards. Seems a variant of that happens.
Yours doesn't sound "patchy" for you have two distinct areas. If those areas are continuous, it's possible it's UC. CD can also present as the same. It seems a waiting game for you. But...you're on medications that would treat either, so that's a good start.

Testing usually states consistent with and not a definitive. Crohn's before it's gone deeper past the usual of UC can look like UC.

Do you have your biopsies results? And were biopsies taken all throughout your colon (hoping)?

Personally, you're not on enough medication strength, but you are on the right oral med. But...since you're just starting, they can be increased...which is a good way to do it.

Welcome to the forum.

q
Posted 7/8/2015 6:18 PM (GMT 0)
quincy:

From what the report says I'm not too sure if its patchy or whole solid areas. The inflammation was described in the report as "patchy congestion and granularity" if you know what what means? and also "Inflamation seen in the caecum and rectum up to 27cm"
but this was while I was on pred and having 0 symptoms. I'll ask next time I'm there.

Yup they took biopsies from all throughout my colon and 0 inflammation found in between the two areas. and the biopsies from the inflamed areas showed negative for crohns, but they said there's a small possibility they were just unlucky. and just as you said it might take many years until they find out for sure.

Thanks for the info! Do you have any suggestions on what meds I could try or strength I should go up to if I keep getting problems?
Posted 7/8/2015 6:37 PM (GMT 0)
In my first colonoscopy ever they diagnosed Crohn's, based on the patchy visual inspection. I had inflammation at the beginning of my ascending colon, inflammation at the corner where the transverse colon meets the descending, and then continuous inflammation in the last 12 inches of descending colon, including rectum. During my actual flare, I experienced pain at the ileo-cecal valve and the last 12 inches of colon, nowhere else.

Biopsies changed the diagnosis to UC, but I am not entirely convinced, especially because I had some of the secondary conditions that only Crohn's people have. The hospital GIs initially said they suspected it was Crohn's but deferred to the biopsies. They weren't able to do a proper colonoscopy a second time because the rectal inflammation was fulminating, so I'll never know if I have Crohn's or UC.

In the end modern medical treatments didn't really work on me, so it didn't matter anyway. From a general perspective, inflammation is inflammation and it gets healed the same way if you aren't on medication.

If you have doubts about the diagnosis you should ask for verification. It could change the course of treatment. As I said, modern medicine didn't work on me, but maybe that's because they thought they were treating UC when really it was Crohn's or UC-Crohn's. If it was Crohn's, I maybe would've received humira instead of remicade, for example.
Posted 7/8/2015 8:08 PM (GMT 0)
Chiron: I'm sorry to hear no meds worked for you. =/ But sounds like you are beating it with diet so thats even better!

Thanks a bunch for sharing your experiences and advice! I never expected so many people to have it in different places on their colon like me.
Posted 7/8/2015 10:49 PM (GMT 0)
You actually don't have it in different places...it does follow ONE pattern of UC which is rectum and cecum.

Like I mentioned regarding UC or CD, the pathologist doesn't make a determination for diagnosis. He/she makes a consistent with what your biopsies look like at a cellular level...your doctor makes the hypothesis of what you have.

I think with entire rectum involvement and possibly beyond depending on your anatomy, that you should be on retention enemas to goes beyond that area to help prevent spreading upward.

It sounds as though the term up to 27cms means continuous.

q
Posted 7/9/2015 10:54 AM (GMT 0)
I do tend to flare a lot and would say I'm in complete remission less than 50% of the time. The good news is that my flares are very mild. As I mentioned blood is my predominant symptom when flaring. Since my initial flare, the blood is very minimal, probably wouldn't be noticed by someone without UC who isn't paying much attention. I have a tiny bit of mucus also.

I tend to go 2-3 times/day in remission and during a flare I go 2-4, so overall average increased slightly. I really don't have any increased urgency, and the stool doesn't lose form much if at all. Even when flaring a lot of times my body will 'hold it in' if I'm out of town for the day or whatever and I'll get the urge to go when I get a few miles from home.

So all in all I don't have too much to complain about as far as severity of flaring, I just wish I stayed in remission longer.

Post Edited (Levi) : 7/9/2015 4:57:36 AM (GMT-6)

Posted 7/9/2015 2:28 PM (GMT 0)
quincy: I see. so this can still be a form of UC since it sounds like its continuous. Thank you for advice about enema, I will ask about this.

Levi: Yeah this is sounding nearly identical to me except right now I have a LOT of urgency, pain and a good bit of blood. I'm thinking I didn't go to docs about this flare soon enough tbh and made mistake of trying to control it myself by doubling up on pentasa alone.
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