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Ulcerative Colitis
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Posted 11/13/2023 8:58 AM (GMT 0)
Hello, I'm living in France. I'm 19 years old.
In March 2021, suddenly without having any problem before, and after eating a kebab, i observed some trouble with diarrhea. 15 days later, fortunately, I visited a gastroenterologist and we discovered a parasite in my stools without having its name. I started some medecine for this parasite but I have never been in remission since this day due to this kebab. The colonoscopy done on july 2021 revealed a pancolitis.
I don't know if I'm the only one on this forum, but in the last colonoscopy in october 2023 we never see any hard damage to my rectum, the most damage are located far from this rectum but rather to my right colon.
I tried corticosteroid, Pentasa, Humira, Entyvio but I met no remission....
Sorry to my mistakes but I've not the habit to practice english regurlarly.
I tried Glutamin, omega- 3, Saccharomyces Boulardii, Vivomixx 450.
Posted 11/13/2023 9:38 AM (GMT 0)
Here the last results of my colonoscopy (october 2023) : the rectum presents partial obliteration of the vascular network with erosions without bleeding.
The left colon and the transverse colon present the same appearance but without the presence of blood.
From the colonic angle to the lower cecal fundus, a complete obliteration of the vascular network with spontaneous bleeding and superficial erosion are observed. My gastroenterologist explained me that it was not possible to go higher given the bleeding.
The count of my calprotectin just at the end of august was 2900 !!! I was so afraid !!!!
But surprising as it may seem, it's very rare I notice bleeding during my disease that's why my gastroenterologist wanted to make sure that it was not the Crohn disease but in fact seeing the results of the different samples, it's ulcerative colitis. I have Entyvio since this February, I notice an improvment but for a few days, I have been getting up at night, it's a sign that there is a problem.
Posted 11/13/2023 9:49 AM (GMT 0)
I have Entyvio every 4 weeks by infusion to the hospital.
My CRP is never high (the highest count during my disease : 5) but my blood platelets sometimes, like now (about 500).
My gastroenterologist told me that Entyvio is not enough effective and tells me about STELARA or XELJANZ. Here in France, we have no reimbursement problem unlike in the USA.
Posted 11/13/2023 10:00 AM (GMT 0)
I'm trying to read a lot of articles concerning this disease and especially researches in this field, for example I pay attention to the different articles written by Pr. Jean Frederic Colombel ( School of Medicine at Mount Sinai in New York).
I follow the development of the ABX464 (medicine developed by ABIVAX society) and you, in USA, what are the main researches at this moment ?
Posted 11/13/2023 10:00 AM (GMT 0)
What medicine did you take for the parasite?

Is there any evidence the parasite remains?

Did you respond at all to Humira? Partial response?
Posted 11/13/2023 10:09 AM (GMT 0)
For the parasite I took ZENTEL, FLAGYL and CIFLOX.
We did a parasite analysis after and no trace of parasite.
I did'nt respond at all to Humira even with high frequency : Humira 80 every 14 days and stop this medecine in January.
Posted 11/13/2023 10:19 AM (GMT 0)
Do you have a copy of the biopsy report that led your doctor to conclude this is UC and not Crohn's disease?
Posted 11/13/2023 10:36 AM (GMT 0)
No, I don't have this copy but my gastroenterologist did different samples and wrote to my doctor where she explained that it's an UC.
The duodenum biopsies are normal.

Post Edited (Titou) : 11/13/2023 2:44:04 AM (GMT-8)

Posted 11/13/2023 10:56 AM (GMT 0)

beave said...
Do you have a copy of the biopsy report that led your doctor to conclude this is UC and not Crohn's disease?


I agree with that it could be strange to notice that some similarities with Crohn's disease : the place of the lesions, no damage to the rectum, and I suffer from a lack of B9 vitamin and I read that 20% of Crohn's disease is only located in the colon without trouble in the others organs.
In April 2023, I had a Bili IRM to make sure I have not got the CSP (primary sclerosing cholangitis) : no trouble in my pancreas, liver, rate, biliary, kidneys, adrenal.

Post Edited (Titou) : 11/13/2023 3:35:09 AM (GMT-8)

Posted 11/13/2023 10:57 AM (GMT 0)
Beave, what is your opinion ?
Posted 11/13/2023 6:26 PM (GMT 0)
Hi...welcome to the forum.

You need to have a copy of the the biopsies pathology results from both colonoscopies. The report you presented was the visual findings of the scope.

What parasite did you actually have...you should ask for the results of that test as well for your records.

q
Posted 11/13/2023 9:02 PM (GMT 0)
Interesting article on rectal-sparing UC. Although it is from 2010, there may be newer studies.

https://pubmed.ncbi.nlm.nih.gov/20410806/

It basically says 0 patients had complete absence of rectal involvement but some patients had apparent absence of rectal involvement if based purely on endoscopic findings (that's my 1 sentence summary).
Posted 11/14/2023 9:23 AM (GMT 0)
Thanks a lot for your advice.
For the parasite, I have all the results but unfortunately, the sensibility of the technology wasn't enough to identify it. We know that is a parasite like helminthes because Leydin Charcot crystals had been found.

Today, I'd just asked the two gastroenterologists the biopsies pathology results from both colonoscopies.

Now, I wanted to ask you if it would be interesting to focuse on the microbita analysis and which one ?
Posted 11/14/2023 10:00 AM (GMT 0)

poopydoop said...
Interesting article on rectal-sparing UC. Although it is from 2010, there may be newer studies.

https://pubmed.ncbi.nlm.nih.gov/20410806/

It basically says 0 patients had complete absence of rectal involvement but some patients had apparent absence of rectal involvement if based purely on endoscopic findings (that's my 1 sentence summary).

Thanks a lot !!!

For me, the rectoscopy doesn't give the real situation of the disease that's why it's difficult to know the level of the inflammatory !
Posted 11/14/2023 10:23 AM (GMT 0)
Some further information : the biopsies show an architectural disorganization of the glands which are distorted, an increased lympho-plasmacytic infiltrate. No granuloma was found.
Posted 11/14/2023 10:33 AM (GMT 0)
What corticosteroid did you try? What dose and for how long? Did it help partially or not at all?
Posted 11/14/2023 11:10 AM (GMT 0)
I started Cortancyl (prednisone) just after my first colonoscopy (July 2021) : 60 mg during the first week and with a decrease of 5 mg per week. I maintained it during several months but at low concentration (4mg). I noticed a good improvement during the first week.
I have had Entyvio for 8 months (February), nice improvement for me (2-3 per day,0 during the night), not enough for my specialist, she added Imurel but that increase the parameters ok my liver after a week. In the middle of October, I caught a viral angina with totally liquid stools, then it calmed down, I returned to hospital for my Entyvio infusion in the 2nd of November, but for a week my troubles have returned. Last evening I send a mail to my gastroenterologist, and she answered me and asked me to start Solupred (Prednisolone) 40 mg during a week with a decrease for a month.

Post Edited (Titou) : 11/14/2023 3:17:23 AM (GMT-8)

Posted 11/14/2023 11:41 AM (GMT 0)
Here are the last results of my biopsies rectum and sigmoid (october 2023) : architectural disorganization with marked rarefaction of glands. The few remaining glands are distorted. Increased lymphoplasmatic interstitial inflammatory infiltrate.
Many eosinophils, polynuclear neutrophils in exocytosis within the glands.
Absence of dysplasia,
absence of ulceration,
absence of visible granuloma.

Further samples are picked from the stomach (duodenal, antral, fundal biopsies) : nothing, no Helicobacter Pylori, only a reactive gastritis.
Posted 11/15/2023 2:04 AM (GMT 0)
Welcome to the UC forum, Titou. Since you mentioned looking into Dr. Colombel's research at Mt. Sinai in NYC, do any of your doctors in France have the possibility to consult him about your case? I ask because Mt. Sinai NYC has a long experience treating UC and Crohn's patients, and educating gastroenterologists about IBD over time-- so they may also participate in international consultations. I know that it's possible to develop UC after fighting off a parasitic infection because that happened to me-- from amebiasis. (In U.S. the gastroenterologists call it "post-infectious UC".) / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 11/15/2023 8:18 AM (GMT 0)
Hi Old Hat, in France there is an association for IBD called AFA ASSO (www.afa.asso.fr) with videos on You Tube so it's possible to see the main french researchers and specialists in this field. I follow it and you in USA, what are the main internet sources about IBD ? Thanks to it, I make sure that my gastroenterologist follows the recommendations.
Old Hat due to your post-infectious UC, which treatments have you got during all your disease ? Had you got a special analysis (microbiota or something else?)
For me, until now, I tried 5ASA (Pentasa granules and suppositories), corticosteroids (Cortancyl), HUMIRA (adalimumab) and now ENTYVIO (vedolizumab), IMUREL (azathioprine) plus ENTYVIO only during a week (consequences on my liver). My gastroenterologist wants to start at the end of this month STELARA.
Posted 11/15/2023 5:49 PM (GMT 0)
In USA IBD research comes under the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), which is supposed to have a National Digestive Diseases Information Clearinghouse. (A huge bureaucracy to navigate online, basically-- www.niddk.nih.gov.us/digestive-diseases) That's why I mentioned Mt. Sinai NYC in my previous post to you-- because their IBD Division has long done major research on Crohn's and UC. Their Website would be under the Icahn School of Medicine. *** RE my own UC diagnosis/treatment: 1st I had to take Flagyl against amebiasis, then a steroid (hydrocortisone), then enteric-coated sulfasalazine tablets (= 5ASA med.) It became obvious after 3-4 months that I needed different medication to stay in remission from UC! My inflammation was left-sided, and it seemed impossible back in 1980s for anything except steroids to treat the descending colon. Finally I got my salvation 5ASA from participation in a drug trial 2002-3 for Colazal. It was developed to treat left-sided UC inflammation especially. *** It sounds like your doctors have been giving you appropriate recognized treatment for UC going from steroid to Pentasa 5ASA then oral immunosuppressants to biologics, but nothing so far has enabled you to achieve remission. What have your scope results indicated about your terminal ileum? Inflammation there is very important to the determination of Crohn's disease-- in case you actually have Crohn's rather than UC. Several forum members here do have experience with Stelara use-- so you could get information about it by starting a new thread with Stelara in the title. Bon courage! It could also be that you need more information on nutrition and vitamin/mineral supplements that can help to reduce intestinal inflammation. / Old Hat (40+ years with left-sided UC; in remission taking Colazal)
Posted 11/16/2023 12:49 AM (GMT 0)
The following are generalizations but are based on data:

1. For a person with UC who gets no response from an anti-TNF like Humira, the odds of Entyvio working aren't very good.

2. For a person with UC who doesn't respond to an anti-TNF and only gets a partial response to Entyvio, the next recommended drug class might be the JAK-inhibitors, not Stelara. The JAK-inhibitors are more likely to work than Stelara for UC in this case. BUT, which one to select also depends on the individual and their age, medical history, and any other health conditions they may or may not have, because Stelara generally has a safer risk profile than JAK-inhibitors.

3. For a person with Crohn's who doesn't respond to an anti-TNF, Entyvio is unlikely to work, but Stelara would be a good choice for the next med to try.

So since you appear to have UC, not Crohn's, I would think that a JAK-inhibitor would be next for you unless you have another health condition that makes it too risky.
Posted 11/22/2023 6:25 AM (GMT 0)
Beave, I fully agree with these generalizations, I think that Stelara will be unlikely to work, but I accept to try it before JAK inhibitor. I'm afraid of JAK inhibitor because I have a heart murmur (souffle au coeur in French) and I had some trouble for example with Humira and a recent virus (viral angina) in my liver (high increase of parameters like ALAT, ASAT and GGT).
Due to some different virus, has anyone had the same liver disorders ?
Posted 1/8/2024 10:21 AM (GMT 0)
Hi !! Happy new year for eveyone !
At the end of November, I had my perfusion of Stelara. No fantastic improvement since this perfusion. Last friday, I had a blood test that shows a high rate of platelets that sign persistence of the inflammatory...I'm so sad. Do you know if a lack of quick response is a strong sign for the efficiency of Stelara ? I had ma first injection made by a nurse this week.
Posted 1/8/2024 2:31 PM (GMT 0)
Titou, it's too soon to know if the Stelara will work for you or not. It's a slow going medication especially in the beginning. Other than one of the JAK meds, I've never seen any of the meds kick in immediately, if only they would.

Take care.
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