Crohn's Disease Forum » Your Story » UC or Crohnís?


02-09-2018, 06:37 AM   #1
gger7
 
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UC or Crohnís?

Hi, I was diagnosed with IBD last July, I was admitted to hospital with joint problems and mouth ulcers and blood in my poo, was diagnosed with Ankylosing Spondylitis (arthritis) and IBD. Iím on Humira to treat both conditions. Iím waiting on confirmation of Crohnís or UC, Iíd be interested in what you all think based on my symptoms:

Mouth ulcers, sores up the inside of my nose, weight loss (initially 2 stone), tummy bloating, diarrhoea/constipation (varies), blood/mucus in poo, skin tag at my bum. Also sometimes if I try to hold in wind from my bum, it feels like it passes through the front passage. Also all the joint problems from arthritis.

So far Iíve had a flexible sigmoidoscopy which showed proctitis but the biopsies didnít show Crohnís so they think UC. I had a colonoscopy two weeks ago, confirming moderate proctitis, waiting on biopsy results. CT scan does not show fistula so Iím referred to gynae and for a CAT scan. Iím currently having a massive outbreak of mouth ulcers and nose sores, see my GI this afternoon.

Any opinions, info or advice would be very welcome! Iím basically worried they diagnose UC based on the proctitis, and miss something in small intestine or elsewhere as from reading up on IBD I though the mouth ulcers/possible fistula/skin tag were more indicative of Crohnís
02-09-2018, 06:58 AM   #2
ronroush7
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Hi. I am not sure but i hope you have some answers soon.
02-09-2018, 12:08 PM   #3
Scipio
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The key thing here for making a diagnosis for you will probably be what does your small bowel look like - either via colonoscopy to look at the terminal ileum, or MRI to image the small bowel, or capsule camera endoscopy to visualize the interior of the small bowel..

The proctitis sounds like UC, but if the ulcers are patchy rather than continuous and/or extend all the way up into the small bowel, then that would suggest Crohn's.

The mouth ulcers could be from Crohn's but that is relatively rare. But they very well could be due to the Ankylosing Spondylitis. They are common in AS.

Are they planning a full colonoscopy or capsule camera endoscopy any time soon? IMO those could be very informative in making a final determination between UC and CD.
02-09-2018, 12:40 PM   #4
gger7
 
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The key thing here for making a diagnosis for you will probably be what does your small bowel look like - either via colonoscopy to look at the terminal ileum, or MRI to image the small bowel, or capsule camera endoscopy to visualize the interior of the small bowel..

The proctitis sounds like UC, but if the ulcers are patchy rather than continuous and/or extend all the way up into the small bowel, then that would suggest Crohn's.

The mouth ulcers could be from Crohn's but that is relatively rare. But they very well could be due to the Ankylosing Spondylitis. They are common in AS.

Are they planning a full colonoscopy or capsule camera endoscopy any time soon? IMO those could be very informative in making a final determination between UC and CD.
Hi, thanks for replying. I met with the GI this afternoon and he has confirmed Crohnís, as the colonoscopy showed patchy ulceration, worst at the rectum but continues into the small intestine. Is it still called proctitis if it is Crohnís? He has given me an antibiotic for the mouth ulcers, referred me for an MRI to see if I have a fistula, doing a CAT scan as well. It is good to get a diagnosis and have a plan of action but I am still nervous about everything going on in my body. Iím 35 and have two young kids, I hate that the symptoms get in the way of me being the mum I want to be, if I can do everything I can to minimise the symptoms and try to get a new normality Iíll be happy. Thanks again
02-09-2018, 01:17 PM   #5
Scipio
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Proctitis is a symptom rather than a disease. It just means inflammation of the rectum (of any cause). So you still have proctitis --> Crohn's proctitis. Crohn's is the disease and proctitis is one of its symptoms.

Everyone's case of Crohn's is a little different. So what works for others may not work for you and vice versa. So your doc may have to try a few things before hitting the right combination of drugs, diet, and lifestyle that minimizes your disease. Fortunately, there are many drugs available to work with and more are on the way. So my advice is be a knowledgeable patient (this board can help with that) and work closely with your doctor to find the right sweet spot that will permit you raise your kids and live your life in a more or less normal way.
02-09-2018, 03:52 PM   #6
gger7
 
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Thank you, that makes sense, in nice plain language! I appreciate the info and advice
02-09-2018, 04:10 PM   #7
Jabee
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since you have mouth ulcers I would have said crohnís, since ulcerative colitis is confined to the colon. Ankylosing Spondylitis also accompanies crihnís more often than UC. Hopefully the humira will help both. Tagging

Maya142

Her daughters and husband are all affected by Ankylosing Spondylitis and she always has sound advice.

Hope you feel better soon.
02-09-2018, 05:52 PM   #8
Maya142
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Ankylosing Spondylitis can accompany both Crohn's and UC.

I met with the GI this afternoon and he has confirmed Crohnís, as the colonoscopy showed patchy ulceration, worst at the rectum but continues into the small intestine. Is it still called proctitis if it is Crohnís?
It sounds like a definite Crohn's dx based on the ulceration in the small bowel. Crohn's can occur in the rectum - my daughter has it in her rectum as well as other parts of her colon and terminal ileum.

Both my daughters and my husband have AS, but only my younger daughter also has Crohn's. My younger daughter is on a biologic for her AS and an immunomodulator (Imuran) for her Crohn's. There are some treatments that treat both diseases (such as Remicade/Humira) but she has failed all of them so we have had to go for more unconventional treatment.

In terms of treatments, what dose of Humira are you on? You may need a higher dose if you still have symptoms. How long have you been on it?

Humira worked well for both my daughters. My younger one was on it for 2.5 years and my older daughter was on it for 5 years. But both needed Humira weekly + Methotrexate before it worked for them. And it did take several months for it to work.

Adding an immunomodulator like Imuran or Methotrexate would help with your symptoms. MTX works for both arthritis and Crohn's, so that is usually the first choice. My older daughter is still on MTX and it really does help her.

In terms of the AS, things like ice and heat help with the pain. Physical therapy has helped my daughters a lot. Movement is essential for AS - my girls had one rheumatologist who used to say "Move it or fuse it!" Swimming or biking are good low impact exercises. Massage also helps a lot.

Additionally, a stretching routine is a good idea - a physical therapist can help you with that. Spondylitis.org also has good exercises on their website.

It sounds counterintuitive, but swimming often helps them with the pain. Sometimes I have to DRAG my girls to the pool, but once they are in the water and swimming, they feel a whole lot better. Even just being in the water helps, if you are in too much pain to swim.

You can have both AS and Crohn's and have a relatively normal life. To do that, you want to get the inflammation under control as quickly as possible and keep it under control to minimize joint damage. AS can really do a lot of damage to the joints if left unchecked.

My younger daughter has very aggressive AS and is dealing with joint damage in several joints which causes a lot of pain. Unfortunately, once joints are damaged, there is not a whole lot that can be done. So it's REALLY important to prevent it from occurring.

My older daughter is doing very well on her treatment - she has graduated with college and now works full-time. My younger daughter is in college and we are working on getting her AS and Crohn's under control.

Good luck and let me know if you have any questions!
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
02-09-2018, 06:12 PM   #9
gger7
 
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Wow, thank you so much for taking the time to reply. So much useful information! I got diagnosed in July 2017 with IBD and AS after a year of SIJ pain. Tested positive for HLA-B27 and then MRI showed sacroiliitis. I do stretches every day, we have an organisation called NASS in UK that might be like your spondylitis.org but Iíll take a look at their site too. Thanks.

I started Humira at the end of September, 40mg every fortnight. The GI told me 3 months later that they should have recommended 4 x loading doses but because rheumatology took the lead on my care, it got diagnosed according to their guidelines. They talked today about increasing the frequency of my Humira or adding more medicine in, maybe the methotrexate you mention. But they wanted to give it another few weeks to see how it goes.

Your family are lucky to have you supporting them, it is so good to hear of others leading normal lives and to get words of encouragement
02-09-2018, 06:25 PM   #10
Maya142
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The loading dose really helped my younger daughter - she has been on Humira twice. The first time, her rheumatologist prescribed it, so no loading dose. It took 6 months after MTX was added and it was made weekly for it to kick in!

The second time, she had been diagnosed with Crohn's, so her GI prescribed it. So she did the 4 shots on day 0, 2 shots on day 14 and then 1 shot every week after that (since we knew that every other week did not work for her). It kicked in within 2 months!

We have learned that for most biologics, the Crohn's dose is higher than the AS dose. Not quite sure why. So now we let her GI do the prescribing or her rheumatologist uses Crohn's as the reason to get the higher dose.

My girls and husband are also HLA B27+.

Which joints are involved besides your SI joints? Because MTX only works for peripheral joints - joints other than the spine/SI joints. So for example, feet, hands, knees, ankles, elbows etc.

If you only have axial (spinal) involvement or have predominantly axial involvement, then upping Humira might help more than adding MTX.

My girls both have many joints involved. The older one has SI joints, ankles, knees, heels and hips. My younger one has basically every joint involved - SI joints, lumbar spine, ankles, knees, heels, fingers, jaw, elbows etc.

But for both of them, their SI joints are the most painful.

The other option for sacroiliitis is steroid injections directly into the SI joints. My girls have them many times. They really help.

On a totally different note, in terms of mouth ulcers, have you tried magic mouthwash? It is equal parts milk of magnesia and liquid Benadryl. It helps a little. If you get a prescription version, then they often add Lidocaine or another numbing agent too. But we use the homemade kind when my daughter has mouth sores. You can google it - there are many ways to make it.

Good luck!!
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