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It’s looking like UC

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Ulcerative Colitis
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Sja13
New Member
Joined : Nov 2022
Posts : 16
Posted 11/19/2022 5:42 PM (GMT -8)
9 days out from a colonoscopy to try to confirm ulcerative colitis…

A little background, had symptoms in 2016 and had a colonoscopy done for them to say it was “microcolitis”, could be an isolated thing and to call them back if it happened again.

Flash forward to a few weeks ago and I’m having GI bleeding, diarrhea, urgency and some mild cramping. Calprotectin came back pretty high and fecal globin test was positive, negative for bacterial infection. Doctor said my first colonoscopy more than likely wasn’t microcolitis and was trending towards UC. Doctor put me on Budesonide, which I’ve been on for 9 days now and mesalamine suppositories for 4 days now. A couple days ago I thought I was seeing some improvement but that doesn’t seem to be the case. Is it too soon to know if the medication is going to work and I just need to give it more time? Obviously I need to wait and see what the colonoscopy shows but wanted to hear some other peoples experience with these medications.

Post Edited (Sja13) : 11/21/2022 8:19:23 AM (GMT-8)

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straydog
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Joined : Feb 2003
Posts : 19273
Posted 11/20/2022 7:16 AM (GMT -8)
Welcome to the forum Sja. Sorry you haven't had any replies, the forum is slow on weekends. Everyone reacts differently, it also sounds like you are in a nasty flare. Give your meds some more time, stay the course, everyone reacts differently to medications.

Does your drs office have a patient portal by chance? If so, you may want to consider going there & asking for antispasmodic, it can help with the cramping & diarrhea. If no patient portal put in a call to the drs office requesting this.

Hopefully you will get the results back this week. Take care.
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Sja13
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Joined : Nov 2022
Posts : 16
Posted 11/20/2022 7:27 AM (GMT -8)
Thank you. They do have a patient portal and I have put a message in with an update for them to see Monday morning, so hopefully my GI will have some insight.
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brucen36
Regular Member
Joined : Mar 2014
Posts : 342
Posted 11/20/2022 10:19 AM (GMT -8)
I assume you mean the budesonide MMX. If so, give it more time. At least two weeks.
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quincy
Elite Member
Joined : May 2003
Posts : 33490
Posted 11/20/2022 1:15 PM (GMT -8)
Do you have a copy of the pathology results? Is your doctor a GI?

Welcome to the forum.
q
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Sja13
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Joined : Nov 2022
Posts : 16
Posted 11/21/2022 8:25 AM (GMT -8)
The budesonide is 3 mg pills and I am taking 3 of them at night. I am dealing with a GI who is the one who ordered the colonoscopy this time around. I have the pathology results from the first colonoscopy in 2016, it states:

Fragments of colonic mucosa with focal moderate increase of eosinophils and plasma cells in lamina propria. No cryptitis, crypt abscesses, ulceration or granulomas are identified.

Chronic colitis with mild activity. The fragments of tissue show mild architectural distortion. Mild and focal cryptitis seen. No dysplasia seen. Findings are consistent with inflammatory bowel disease, favor ulcerative colitis. Clinical correlation is recommended.
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straydog
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Posts : 19273
Posted 11/21/2022 9:44 AM (GMT -8)
So this is your is from the 2016 scope, correct? I would think you will get the report of the biopsies back any day now, keep checking your patient portal. Also, let us know when you hear back from your dr, I am thinking you were going to contact him.

Take care.
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Sja13
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Joined : Nov 2022
Posts : 16
Posted 11/21/2022 9:47 AM (GMT -8)
I don’t have my next colonoscopy until November 30th so it will be a couple weeks until I hear anything I’m sure. In the meantime I’m just trying to keep these symptoms under control. I have 2 little ones and having to run to the bathroom all the time is making things hard.
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straydog
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Posts : 19273
Posted 11/21/2022 10:23 AM (GMT -8)
Ok, I misunderstood what you wrote, you said 9 days out from colonoscopy waiting to confirm UC.

When this started in 2016 what medications did the dr put you on? Did you just have the initial problem & none after that?

Sorry for asking so many questions, just curious about what has happened from 2016 until now.
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Sja13
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Joined : Nov 2022
Posts : 16
Posted 11/21/2022 10:54 AM (GMT -8)
I was put in Budesonide and my symptoms subsided and I never had any other issues warranting a call to GI. They told me it was microcolitis and could be an isolated incident and to call back if things got bad again. I’ve had bouts of diarrhea here and there but never anything I thought I needed GI for. When these issues started about a month ago I looked back at my patient portal and actually read the notes from my colonoscopy saying “favoring ulcerative colitis”.
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quincy
Elite Member
Joined : May 2003
Posts : 33490
Posted 11/21/2022 11:42 AM (GMT -8)
Basically, your GP is remiss in treatment and for not sending you to a GI immediately, because microscopic colitis is never a one-off. Plus...it states favouring UC.

Is there anywhere on your report that states location extent and where the biopsies were taken from?

Looking forward to hearing about this c-scope and the results. I suggest you strongly request to be sent to a GI.

q
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Sja13
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Posts : 16
Posted 11/21/2022 11:48 AM (GMT -8)
I have seen a GI for both my flare in 2016 and my current one. GP ordered the stool samples and blood tests and referred me to them right away. Original biopsies were taken from both left and right colon according to the patient portal. We will see what the next colonoscopy shows!
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beave
Veteran Member
Joined : Mar 2007
Posts : 2323
Posted 11/21/2022 4:29 PM (GMT -8)

Sja13 said...
The budesonide is 3 mg pills and I am taking 3 of them at night. I am dealing with a GI who is the one who ordered the colonoscopy this time around. I have the pathology results from the first colonoscopy in 2016, it states:

Fragments of colonic mucosa with focal moderate increase of eosinophils and plasma cells in lamina propria. No cryptitis, crypt abscesses, ulceration or granulomas are identified.

Chronic colitis with mild activity. The fragments of tissue show mild architectural distortion. Mild and focal cryptitis seen. No dysplasia seen. Findings are consistent with inflammatory bowel disease, favor ulcerative colitis. Clinical correlation is recommended.

Are these two results for the left and right sides of the colon? Is the first part the right side and the second part the left side?
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Sja13
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Posted 11/21/2022 4:33 PM (GMT -8)
It seems as though there was specimens taken from both left and right colon but those results are just listed under “final diagnosis”. Each specimen doesn’t have its own notes in my patient portal.
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beave
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Joined : Mar 2007
Posts : 2323
Posted 11/21/2022 4:55 PM (GMT -8)
OK, maybe the actual report gives a little more detail about the location each biopsy was taken, whereas the info provided to you in the patient portal is missing that. The two results must be from different areas because they contradict each other (one saying no cryptitis, the other saying cryptitis seen). My guess is the first is more right side colon and the second is more left side colon or sigmoid colon or rectum. That would fit with the patterns often seen in UC.

Keep taking the meds given until your upcoming scope. Hopefully they'll start to help soon. Your upcoming scope should tell you alot more and then you can decide on a proper treatment plan.
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Sara14
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Joined : Mar 2007
Posts : 7543
Posted 11/21/2022 11:48 PM (GMT -8)
I'm surprised they put you on any meds before scoping you (meds can mask what's going on). Budesonide should work within about 2 weeks if it's going to. Since you were given meds, Im wondering why they didn't give you oral mesalamine. The suppositories never helped me at all. I got relief with oral mesalamine and enemas for many years. You could ask about trying oral mesalamine if you want. Your flare symptoms don't sound terrible so I wouldn't jump to prednisone. How many BMs a day? Could ask for and try Bentyl or Levsin. They never did a thing for me but seem to help some here.

What is a fecal globin test? Never heard of it in my 16 years with UC.

Pretty lucky and unusual you never had any symptoms in 6 years without any meds.
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Sja13
New Member
Joined : Nov 2022
Posts : 16
Posted 11/22/2022 3:43 AM (GMT -8)
I believe the fecal globin just tests to see if there is blood in your stool. I guess I shouldn’t say I’ve never had any symptoms because I’ve definitely had diarrhea, cramping, gas, urgency at some point over the last 6 years but no GI bleeding that would cause me to think it was anything more than my diet or a virus or something. I think he gave me meds because of the similarities from the last time and budesonide was what they gave me then. But it’s been 11 days and I’m not seeing any improvement in terms of bleeding or BMs. They also weren’t able to get me a colonoscopy until March at that office so I am having to go over an hour away to get it done sooner. I’m probably having somewhere around 7-8 BMs a day with 3 of them being in the morning. As far as why they didn’t give me certain medications it could be because I am breastfeeding? I was given the Budesonide first and then when I wasn’t seeing relief he said from the consistency of my BM it sounds like my bleeding is coming from lower down and that a suppository could help. Since then the consistency has changed from just soft to diarrhea and I feel like the bleeding has increased.
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quincy
Elite Member
Joined : May 2003
Posts : 33490
Posted 11/22/2022 11:14 AM (GMT -8)
Breastfeeding women can take mesalamine...it should have been first med. And this time, since you're flaring of probably UC...the enemas of 4g should have been given and at least 2400mg oral.

q
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Sja13
New Member
Joined : Nov 2022
Posts : 16
Posted 11/23/2022 12:56 PM (GMT -8)
Thanks for your advice! I spoke with my GI and he prescribed me 3.6 g of oral mesalamine and wants me to continue taking the budesonide for the time being. He said I can stop the mesalamine suppositories. Colonoscopy is on Wednesday so answers to come.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7543
Posted 11/23/2022 1:38 PM (GMT -8)
I agree with quincy. I'd request the mesalamine enemas if symptoms continue.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1597
Posted 11/24/2022 10:36 AM (GMT -8)
Good luck! Hope you find some relief soon.
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TroubledTurds
Veteran Member
Joined : Jan 2004
Posts : 8717
Posted 11/27/2022 9:35 AM (GMT -8)
yes, i agree, it does look (and sound ) like UC - glad you found this place smile

TT
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Sja13
New Member
Joined : Nov 2022
Posts : 16
Posted 11/30/2022 11:51 AM (GMT -8)
Just got done my colonoscopy, these graham crackers have never tasted so good. Doctor said it looks like our suspicions of UC were correct. So now I wait for the report to be sent to my GI and we discuss a plan on how to proceed. Hard to tell if the mesalamine and budesonide have been working or not. I feel like there has been a slight decrease in the bleeding but diarrhea still remained up until my colonoscopy prep. Will keep you posted when I get the official results.
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Sja13
New Member
Joined : Nov 2022
Posts : 16
Posted 11/30/2022 12:34 PM (GMT -8)
After procedure notes:

A diffuse area of moderately erythematous mucosa with
friability was found in the rectum, in the sigmoid colon,
in the descending colon, in the transverse colon and in
the ascending colon in a continuous fashion without skip
lesions. These were biopsied with a cold forceps for
histology. Estimated blood loss was minimal.
The terminal ileum appeared normal.


Also states he called my GI to tell him it was moderate pancolitis.
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Sja13
New Member
Joined : Nov 2022
Posts : 16
Posted 12/2/2022 10:40 AM (GMT -8)
Sorry for all the posts…pathology results came back…

A. Large Intestine, Right/Ascending Colon, bx:
CHRONIC ACTIVE COLITIS.
NO DYSPLASIA OR GRANULOMAS.

B. Large Intestine, Transverse Colon, bx:
CHRONIC ACTIVE COLITIS.
NO DYSPLASIA OR GRANULOMAS.

C. Large Intestine, Left/Descending Colon, bx:
CHRONIC ACTIVE COLITIS.
NO DYSPLASIA OR GRANULOMAS.

D. Large Intestine, Sigmoid Colon, bx:
CHRONIC ACTIVE COLITIS.
NO DYSPLASIA OR GRANULOMAS.

E. Rectum, bx:
CHRONIC ACTIVE COLITIS.
NO DYSPLASIA OR GRANULOMAS.

F. Rectum, bx:
CHRONIC ACTIVE COLITIS.
NO DYSPLASIA OR GRANULOMAS.
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