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Posted 7/16/2023 5:40 PM (GMT 0)
Hi! I'm new to this group, and also new to being diagnosed with Crohn's. Apologies in advance for repeating questions you've been asked before.

I'm 40 years old, and after three relatively mild flares over the last two years, I was recently diagnosed with mild Crohn's based on calprotectin and colonoscopy (MRI was clear). I found the colonoscopy/biopsy report to be fairly vague, though.

I've consulted two GIs. One is a proponent of the step up approach and prescribed Mesalamine (while acknowledging that it was unlikely to work). The other is a proponent of the newer, top-down approach and wants me on a biologic ASAP. I haven't taken any meds yet, but my insurance approved me starting Entyvio in August.

My question is... Do you wish you'd started on a biologic sooner, or do you think it's worth seeing if the less-expensive and less-intimidating drugs work, especially as my case is currently mild? Or does that seem like it'll just prolong the inflammation?

Also... How do you come to terms with such a serious, life-changing diagnosis, especially later in life? I'm in the process of finding a therapist, but do you have any suggestions for what helped you when you were first diagnosed? I feel like I'm in denial right now - especially because I've been feeling physically great the last few months (calprotectin down to 150 from 850, so not normal, but trending in the right direction). I keep thinking maybe I've been misdiagnosed? Maybe I can achieve remission without meds? Do I really need to be on a biologic for life?! Up until now, I was very healthy, never took medication long-term, rarely saw doctors. I know I probably just need to come to terms with this unhappy change, but I'm feeling very low. ☹️

I also keep getting well-meaning friends and family asking if I've thought about handling this with diet/supplements alone... Neither doctor encouraged that route (though they said diet can help with symptoms). But I keep seeing blog posts from people who have "healed themselves" with, e.g. the SCD diet, etc.
Posted 7/16/2023 8:41 PM (GMT 0)
Hi Rutabaga and welcome to HW
I have been having Crohn’s since 2007. That is 16 years. It’s very normal to go through the stages of being shocked, then in denial and finally accepting the disease and learning how to cope with it. I also started with mild Crohn’s and exhausted all meds out there. All doctors start their patients on mesalamine and then when things get worse (sorry to tell you that but there are flare ups and you mentioned that you have been through them in the last couple of years, meds will change and other kinds will be introduced like steroids and immunosuppressants whether methotrexate or Imuran. If I could go back in time, I would start biologics right away. It took me 9 years until I got approved for taking biologics but by then my mild Crohn’s had turned into moderate and I developed a perianal fistula and taking biologics became necessary. I started off with Remicade for 7 years until it developed allergic reactions and I had been switched to Stelara in February 2023, which hasn’t kicked in yet. I’m waiting for the results of an MRI fistula to confirm the diagnosis of a new abscess.
However, I know people who were started on mesalamine and their disease status did not change to moderate and remained mild. They are lucky. Did you discuss with the second doctor the reasons that made him think it’s urgent to start on biologics?
As for diet, we as patients are different and our responses to both food and medicine are different, too. It’s actually a matter of trial and error. You have to be cautious about what you eat and keep a diary of the food that triggers flare ups. You will learn it by time. Also, it depends on your mindset. Some people believe that medicine will make them feel better, especially if they had gone through bad experiences that made them realize that they would follow a chemical regimen instead of depending on eliminating certain foods. Others see that going natural and not taking chemicals is better.
I’m not intimidating you and telling you that your condition might get worse. Actually, it might or might not. It’s all bound to the nature of your disease and how prepared your immune system to respond to meds/ attack your gut and worsens your condition.
Posted 7/16/2023 10:08 PM (GMT 0)
Thanks for the welcome, Minnietoty! 16 years is a long time! The second doctor was pretty adamant that 5-ASA drugs aren't approved for Crohn's any more, because they are little better than a placebo. However, I have heard that Sulfasalazine can be effective for mild cases... And anecdotally, I've heard of some people who were in remission only on Mesalamine. I know it only targets the surface layer, and Crohn's can go much deeper, but I'm not sure if it's worth pushing back on my GI or seeing the other one, to give it a fair shot before escalating treatment. The second GI prefers using biologics first, as they are more effective when used first, and are more likely to halt the progression of the disease. I see her point, and I know that is the direction treatment seems to be heading in general, based on the latest research. I'm just super freaked out by the side effects...

She did not want to put me on 6-MPs for several reasons - my TMPT test results indicate they'd be a bad fit, and I have concerns about malignancy (I also have a genetic mutation that puts me at increased risk of multiple cancers). Frankly, that class of drugs scares me even more than biologics!

I just wish someone could tell me that my disease will always stay mild. Even during my worst flare, it wasn't awful, just inconvenient. I would gladly change my diet, even to something quite strict. But I'm concerned about leaving inflammation unchecked, even if I don't have symptoms. Right now, I feel great! But obviously there is still low level inflammation, if my calprotectin is 150. My uncle ended up getting an ostomy bag, and I'd prefer to avoid that, if possible (though he still lives a pretty normal, happy life).
Posted 7/16/2023 11:43 PM (GMT 0)
Hi there, Minnie gave you some great information. I was diagnosed in 2002 by having an emergency surgery, not exactly the way you want things to happen. I went on Remicade eventually after finding a good competent dr. It was the best thing that could have happened for me.

There is good information on the web & there is also bad information on the web. I joined this forum back in 2003 & learned so much from the members here.

Do you have a copy of your biopsy report, if so post the results here.

Totally understand your feelings but no one can predict the future. One thing we do know with the right medication there is no reason to not live a normal life.

Keep us posted.
Posted 7/17/2023 12:07 AM (GMT 0)
Hi Rutabaga,

First of all, welcome to HW. You've come to a great place for support. Minnie and Susie have given you great advice already.

Before deciding on more advanced meds, I would be sure about your biopsies from your scope. That's the only definitive diagnostic tool we have As far as meds go, deciding on the top down approach is a tough one. I think most long term Crohn's patients would tell you that in hindsight they would have done the top down approach from day one. Hoping to stay in a mild state is risky. Crohn's is an insidious disease, and even when feeling well, it can be doing permanent damage. As for 5-ASA's, they're totally out of date, and considered antiquated. In short, useless.

The good news for you is, you're 40. You haven't been on a biologic for the last 30 years. If you choose to go with a biologic, Remicade is still considered the state of the art as far as meds go, but there are many others now. When they first came out, there was a lot of fear about the use of them, but now, they are considered a much safer alternative to long term Crohn's effects.

If you do decide to wait on biologics, and go with another immuno like methotrexate, you'll have to keep a very close eye on your symptoms, with regular bloodwork, and diagnostics. If you aren't able to get your symptoms under control, don't hesitate to go the biologic route.

As far as diet goes, I really doubt you'll be able to control this disease with diet and supplements. I've never heard of anyone able to do that. Not saying that you might feel better with certain food choices, but as a treatment plan, I wouldn't recommend it.

Good luck. Keep us posted, and ask questions. There's a lot of experience on this forum.
Posted 7/17/2023 12:23 AM (GMT 0)
It’s definitely normal to go through all those thoughts and emotions! I’ve had Crohn’s for 17 years and still go through them. This is how it went with me: I had what was diagnosed as mild UC and put on canasa suppositories, which was fine until it wasn’t. During a few months time I had a botched root canal and was put on antibiotics, got the flu or what felt like it, and my UC couldn’t handle it; it was like the perfect storm that flipped a switch. I then had a severe flare where I was diagnosed with Crohn’s and ended up in the hospital for a month (prob a 10 month flare overall) with IV steroids, morphine, and lost weight down to about 85 lbs. Overall a very painful and life-altering experience. I was put on 6mp but flared again once I tapered the prednisone, then I was put on Remicaide and eventually Humira.
Once I healed and recovered though I really went back to my old quality of life; I’ve had several flares on and off since then but have learned that is just part of my Crohn’s situation and the majority of the time in between is a good life. If I didn’t have to take medicine I would prefer not to but I know that I have to so I do. I’m currently in a flare and switching medicine again and these are the stressful times but I have faith I’ll be well again.
When I was put on serious medicines I was very sick and really had no other choice. **shrug**
Ultimately this is YOUR decision and you have to do what is best for you. Remember your doctors have opinions but they are not the one living with the decisions so always speak up, be VERY specific in describing your symptoms to the dr, and you can say yes or no to whatever you want. It’s great you got a second opinion! There are so many people with autoimmune conditions now and Crohn’s/UC so there is a ton of information and support. You will be okay! smile
Posted 7/17/2023 12:34 AM (GMT 0)
The 2nd doctor is correct - mesalamines are not approved for Crohn's disease - and they never were. Studies have shown their results to be the same as placebo, or maybe so slightly better that maybe 1 out of 20 or 30 people might see a *slight* benefit from them. Just not worth the expense or the risks. Yeah, they're much cheaper than biologics but still not cheap. And their risks are much lower than biologics but still not zero.

You are also correct that sulfasalazine can and does work for some people, unlike mesalamine. It has decent data showing it's better than placebo. But it's not a whole lot better. And not nearly as likely to help as biologics. And it has worse safety profile than mesalamines. So it is sometimes used in certain cases and may be worth trying for your situation, but in general it's not used all that often any more.

You're also right about 6mp and imuran, as data from the last decade or so shows that they are modestly effective (better than mesalamine for sure, and maybe a little better than sulfasalazine, but not as good as biologics), and their risk profile is a bit concerning especially the longer they are taken. So they too are used fairly often but are falling out of favor and being replaced by biologics, which offer better odds of working and lower risks of serious side effects.

Post Edited (beave) : 7/16/2023 4:52:11 PM (GMT-8)

Posted 7/17/2023 12:50 AM (GMT 0)
As for the step-up or top-down approaches, ideally there should be an in-between, where they consider your current disease activity, your possible/probable future course (will it stay mild? Is it likely to get worse?), and start you on a "step-in" that is tailored to your unique situation including all other health concerns (such as your blood tests for TPMT and your cancer concerns).

There is a lot of work being done on trying to predict future outcomes of individual patients (can we predict you will stay mild?), but unfortunately that work is in its infancy and isn't ready for prime time. So it's hard/impossible to predict whether you will stay mild.

Random comments:
1 There are lots of people with mild Crohn's on mesalamines who do well. But they are probably doing well because their Crohn's is mild and not because the mesalamine is doing any good for them. In other words, they would be doing equally as well if they weren't on anything.

2. Maybe 20-30% of people with Crohn's have it mild and can go for years without treatment and without worsening of disease or permanent damage (fibrosis/scarring). You might be one of those people, but as said above, it can't be predicted now.

3. Many people with mild Crohn's do a 'watch and wait' thing where they don't start a medication but get frequent tests (fecal calprotectin every 4-6 months and colonoscopies as needed, maybe every couple of years) to assess their situation and look for disease worsening/progression, with the idea that if they see it worsening, then start biologics, whereas if it continues to stay mild, no meds needed until it does worsen (if it ever does). And if there are mild flareups then they can be treated with drugs like Entocort (non-systemic steroids taken a few weeks then stopped).

If you do decide on that kind of 'watch and wait' approach, it's imperative to actually keep up with tests. There are lots of stories in the medical community of patients who agree to this, then don't return to the doctor for several years and then show up again in really bad shape. So if you do this, make sure to keep up with testing and scopes every year or two.

4. A lot of that decision making depends on you, your concerns, risk tolerances, etc, and also exactly what was seen in the colonoscopy you had. Any chance you have a copy of the results and can share exactly what was found?

Post Edited (beave) : 7/16/2023 4:56:10 PM (GMT-8)

Posted 7/17/2023 1:04 AM (GMT 0)
As for claims of healing one's self by diet, supplements, etc, you are wise to be skeptical. Yes, diet can help with symptoms, but it's very individualized - what helps one person might be tough on another person. And diet *might* even help a little with inflammation, though studies are very limited in that area.

I remember going to a patient support group where a guy was saying he ate a lot of vegetables but they had to be raw or they would give him problems. Another person says the exact opposite - raw vegetables are the worst for them, but vegetables cooked to mush are ok. One person says tomato sauce is great, another says that's the most bothersome thing they could eat. ....

The people who claim to have cured themselves this way are probably people who have mild disease due to other factors (genes?), and they are attributing their success to something like diet or supplements or other lifestyle factors when their mild disease is actually due to something else entirely that they can't see or control.
Posted 7/17/2023 1:07 AM (GMT 0)
So for your unique situation, here are my thoughts (which could change once you share your scope results):

1. I wouldn't take 6mp or imuran.
2. I wouldn't take mesalamine
3. Sulfasalazine is worth considering. Look it up and look at side effect risks and see if they look like it might be worth trying or not.
4. Watch and wait is also a reasonable thing here as long as you keep up with testing
5. Going to a biologic might be reasonable too, but it can be very expensive and might be overkill in terms of treatment (like putting out a campfire by calling the fire department).
Posted 7/17/2023 1:52 AM (GMT 0)
Wow, thank you all - I can't tell you how much it means to me to hear from people who have been more or less in my shoes. I've been feeling really alone in this process; none of my friends or close family members have dealt with an autoimmune condition.

You've given me some excellent words of wisdom and a lot to mull over. Here is my biopsy report, in case that is helpful. I found it strangely vague, but of course, I have nothing to compare it to. My second GI didn't do another scope, she decided to just base treatment on the one from the earlier GI (though she is an IBD specialist, whereas the first GI has a more generalized practice).

"1:Colon, Colon, Multiple Sites:Biopsy
F 2:Colon, Transverse Colon, Polyp(s):Biopsy 1:Colon, Colon, Multiple Sites Diagnosis Summary :MJ-acute colitis; Inflamed granulation tissue consistent with ulcer. Background colonic mucosa with prominent lymphoid aggregates. MicroScopic Description: The findings are not specific as to the etiology and the differential consideration includes infection, medication effect and inflammatory bowel disease, among others. No well-formed granuloma or dysplasia is identified. Clinical/ endoscopic correlation is recommended. 2:Colon, Transverse Colon, Polyp(s) Diagnosis Summary :MJ-acute colitis; Colonic mucosa with changes suggestive of erosion/ inflammatory polyp. Negative for dysplasia or malignancy. MicroScopic Description: Rule Outs: Carcinoma, Colitis, Crohn's, IBD Site ID:1 Gross Description:Received are >10 light tan tissue fragments which measure up to <1-4 mm in greatest dimension. The specimen is submitted entirely in 1 cassette(s). Site ID:2 Gross Description:Received are 4 light tan tissue fragments which measure up to <1-4 mm in greatest dimension. The specimen is submitted entirely in 1 cassette(s). "

And the comments from the GI who performed the scope:

"Post Op Diagnosis
-Aphthous ulceration throughout the colon with rectal sparring.
-Normal terminal ileum
-Findings suggestive for Crohn's colitis."

And his notes on the biopsy report:
"Biopsies from the recent colonoscopy were consistent with colitis. The differential was broad though inflammatory bowel disease like Crohn's disease can present like this, especially with your symptoms, abnormal stool test and mainly endoscopy findings."
Posted 7/17/2023 2:07 AM (GMT 0)
Oh, and I also have iron deficiency anemia, presumably from Crohn's. I did appreciate that the second GI spotted that quickly and ordered an iron infusion. The first GI told me to take the ferrous sulfate that my PCP prescribed, but I'd read enough horror stories about how tough that can be on the gut, that I sought out an alternative iron supplement. The supplement only raised my ferritin from 4 to 5, though, so I'm going for my first iron infusion tomorrow.
Posted 7/17/2023 2:19 AM (GMT 0)
When was this scope performed?

And when did you have the MRI? Was it with oral and IV contrast? Was it called an MR enterography by chance?

Do you take any medications, even over the counter? Like aspirin, advil, proton pump inhibitors (PPIs lie nexium or prevacide or prilosec)?

When they did stool tests did they test for infectious agents in addition to fecal calprotectin?

I ask all that just to make sure everything else has been ruled out and that this is Crohn's.

Did the GI who did the scope give any more info about how many ulcers were seen and their size? Any "snaking" or "serpiginous" ulcers (like a long tract of an ulcer)? Any of them seen actively bleeding during the colonoscopy?

Have you noticed any visible blood in stool? Red fresh blood or black streaks indicating older dried blood?

I ask to determine more whether this is "mild" or more in the "moderate" category.
Posted 7/17/2023 3:14 AM (GMT 0)
All great questions!

Here's more context:

Have had what I thought was probably mild IBS for years, particularly when anxious or stressed. Not usually full-blown diarrhea, just very soft/mushy stools, some occasional bloating or extra gassiness.

-March 2021: First flare. Diarrhea 3-4x/day, urgency, mucus in stools. No blood. Lasted ~ 2 weeks. PCP tested for celiac, but it was negative. He said probably IBS, worsened by stress.

-September 2022: Second flare. Diarrhea 3-4x/day, urgency, mucus in stools. 2-3x nocturnal diarrhea w/chills. 1-2x fecal incontinence. No blood. Lasted ~2 weeks. Tried low-fodmap diet and gut was instantly better. Ate low-fodmap for 3-4 weeks, but didn't do a careful job of reintroduction.

-December 2022 Third flare. Diarrhea 3-4x/day, urgency, mucus in stools. 2-3x nocturnal diarrhea w/chills. No blood. Tried low fodmap, but this time, no change. After ~2 weeks, diarrhea gradually turned into less frequent, less urgent soft/mushy stools.

-February 2023 Saw first GI. Based on symptoms, he agreed with PCP that it was probably IBS, but ran labs (only infectious agent they tested for was giardia, which = negative). Nothing abnormal except calprotectin = 850; ferritin = 4; hemoglobin = 11.

-March 2023 Colonoscopy. I ate a low-residue diet for one week beforehand. GI who performed colonoscopy (not the one I saw before due to scheduling/insurance issues) didn't comment on the ulcers at all, aside from the notes I posted above. I was prescribed Prednisone and Mesalamine, but didn't take either one, as I wanted to discuss it with the first GI, and I also had an (unrelated, elective) surgery coming up and didn't want to complicate things as far as drug interactions.

-May 2023 MRI enterography w/and w/o contrast (both oral and IV). All clear, absolutely nothing of note in report.

-May 2023 First GI says NOT to take pred, but go ahead and take Mesalamine, as I'd already picked it up from pharmacy (though he doubted it'd work) and we'll retest calprotectin in 3 months. I bought my own calprotectin test order online, as I'd been feeling physically great, and I wanted a baseline before taking Mesalamine. Calprotectin now at 600 (w/o meds).

-June/July 2023 I decided I wanted another opinion before taking Mesalamine. Finally got in to see an IBD specialist at another practice (there aren't that many GI practices in my city - most GIs work at the same practice as the first GI). She ran labs (calprotectin now = 150) but decided to use the March colonoscopy. Said she agreed I had "mild Crohn's," but wanted me on a biologic to keep it mild. Also ordered iron infusion.

-I've enjoyed a lot of years of great health and am medication-hesitant. I almost never took anything except Aleve or Advil 1-2x/month (max) for a headache (kicking myself for doing this now!). I stopped taking NSAIDS in February. I did take clindamycin preventatively 1x/year for 4 years while having 4 total gum surgeries; I was warned this would be hard on my gut. I was also taking a Magnesium Citrate supplement ("Natural Calm") to help me fall asleep a few times a week (First GI said not enough to cause inflammation, but also didn't help stool consistency). Nothing else besides 2000 IU vitamin D in the fall/winter.

-Never seen any blood in stools, but frequently see mucus, even when I feel great/stools are well-formed. Never lost weight.

Thanks for digging so deep! If I can provide any further clarification, please let me know!

Post Edited (Rutabaga) : 7/16/2023 7:47:13 PM (GMT-8)

Posted 7/17/2023 4:03 AM (GMT 0)
Welcome to the forum.

I'm Sorry you are going thru this. I don't think there's any definitive way to ensure your disease will stay mild. I know that theoretically there are probabilities.... But I don't know that I'd trust a maybe. I'd do everything in my power to make sure I didn't progress any further....

But I'm sorta paranoid....

My Medical history is considered a complex rare case.... According to the doctors I've seen. I've been to 2 learning universities in Texas, 1 in Colorado, and to the Mayo Clinic.

I have severe Fistulizing Crohn's disease and UC both... I was super healthy my whole life and then at the age of 52 got food poisoning. I was going to the bathroom 16 to 30 times a day and there was a lot of fresh blood, mucus and what we called little "ghost" poopies... My blood work did not change much during that time period. I also had 3 scopes during those 3 years and only one showed mild inflammation. They thought my case was mild. I thought it was severe and could not believe everything looked ok. I was in the middle of a store shopping when my fistulas broke thru my skin on my abdomen and my vagina--pouring out liquid output. I was rushed to the hospital... Blood work was still ok... They released me a week later and added Crohn's to my diagnosis. We started from the bottom up with medications. I went thru 3 regular GIs who believed in bottom up therapy. I had an appointment with my 4th doctor when 6 months after the fistula break thru I suddenly became septic with mega colon. I was transferred to a University Learning hospital.and a Specialist. He believed in top down approach. We started Remicade 2015. I am still on it. I wish I had started it from the beginning. I went to 3 regular GIs that said it was mild Crohn's and recommended bottom up therapy. They didn't think it was going to continue to worsen based on my labs. I only went to a specialist in 2015 after the sepsis episode.

Labs should tell you where you are with your disease and how you are progressing in your treatment.... If you feel worse than your labs show keep seeking medical help. Research and verify everything. Sometimes there are some people... (Me) where the labs may show only mild changes but for that person those lab changes indicate severe disease. For me a CRP of 13 or 14 is really bad .. for others it's not too bad. So remember everyone is different.

I'd recommend starting a food journal. For me there are foods that make my symptoms better or worse. I'd get all my labs, scopes and MRIs and post them here so others can go over then with you. I'd start researching medications, their costs, your insurance coverage, and get your whole families medical histories. (I have aunts, uncles, cousins with various forms of cancer...and I'm on Remicade and Methotrexate.) You are going to have to make some hard decisions.... And you will probably question why you made them even after you agree to a treatment plan. But you need to treat this disease. In the last 11 years I personally have not met 1 person that could control their disease with food alone. I've also met many individuals that tried "alternative" solutions and wish they'd just started the top down approach sooner.

Beave and others are really good at helping with reports and lab info. They'll walk you thru.. I wish I'd asked more questions on here when I was first diagnosed.... The people tell you what it's really like.

Good luck to you.

Clo
Posted 7/17/2023 4:11 AM (GMT 0)
Thanks for sharing all the details. Makes it a lot easier to know what's been going on.

I wouldn't beat yourself up over taking NSAIDs or the antibiotics. NSAIDs have been a big no-no for IBD for a long time now, but recent data shows they're not as risky as first thought. Occasional use is fairly low risk. Only daily, or multiple times per day use, for extended periods of time is a bigger risk for Crohn's patients.

And antibiotics of course just can't be avoided all the time. I've had to take a couple too for gum surgeries, and several times for other things too (sinus infections and sinus surgeries).

Without seeing the scope myself, and just based on the description provided of your symptoms and scope results, it appears to be widely spread through the colon, and fairly mild but certainly more than 'very' mild. In a scale of very mild to mild to mild-to-moderate to moderate to moderate-to-severe to severe, I'd probably rate it more than just mild, probably mild-to-moderate.

Very mild would be a little redness with biopsies showing microscopic inflammation, and maybe a few (3 to 5?) small aphthous ulcers. Mild a little more than that. Ulcers throughout the colon is a little more than mild but still far from severe.

But all that makes me lean toward agreeing more with the IBD GI that you might want to go on to a biologic. Entyvio has good results and has a very good safety profile - better than imuran or 6mp, better than Remicade or Humira. If you had severe Crohn's I'd probably suggest Remicade more, but I think Entyvio is very reasonable in your situation.

Otherwise I'd suggest the wait and see approach and get another scope in another six months, or if things start to worsen, go straight to the biologic asap.
Posted 7/17/2023 12:40 PM (GMT 0)
Wow, Clo, how scary that must've been! I'm sure being diagnosed as a child/teen is its own hell, but it's also strange to come to terms with this in midlife, when you've always been pretty healthy and it comes out of nowhere.

I'm shocked that any doctor considered your symptoms mild. 16-30x/day sounds awful. And peri-vaginal fistula is my current worst nightmare. The Mayo clinic sounds like the best of the best when it comes to IBD treatment; I hope they weren't the ones ignoring your distress. I'm glad that you eventually got out on biologics; it really surprises me that you had to wait so long.

"You are going to have to make some hard decisions.... And you will probably question why you made them even after you agree to a treatment plan."

Yes! That's exactly how I'm feeling right now. I'm already set to start Entyvio in two weeks - and I am gaining the sense that this is best course of action - but it's tough not to second-guess my decision. I've been wrestling with incredibly challenging, unclear health decisions since January, when I found out I was BRCA2+ (preventative mastectomy or not? Remove my ovaries before menopause or not?), and the medical decision fatigue is real!
Posted 7/17/2023 1:24 PM (GMT 0)
beave, thank you for your insight and candidness - I think that's what I needed to hear. I'm totally willing to get a jump on treatment if it's mild-moderate. I just kept thinking maybe it wasn't as bad as all that, or maybe I was misdiagnosed. But I think you're right, "very mild" wouldn't mean ulcers throughout my colon! I did like the new GI so far, so I'll try to trust her advice and see how that goes. Fingers crossed that Entyvio gets me into remission (and yeah, exactly - I picked it because my damage is so far confined to the colon, and the side effects seemed less alarming to me than the other options, though my next choice would be Stelara, if my insurance approved it). I so appreciate all of your kindness and support.
Posted 7/17/2023 2:26 PM (GMT 0)
Rutabaga, Entyvio is not as systemic as the other biologics, it targets the gut.

Go to their website & register for their patient assistance program with your co-pays. Lots of people do this.

Keep posting here & asking questions.
Posted 7/18/2023 12:14 AM (GMT 0)
Good luck with the Entyvio and let us know how you're doing. One drawback of Entyvio is that it can be slower acting than other biologics. It varies from person to person, but you will likely see gradual improvement over the first 3-6 months, maybe even with a couple steps forward, a step back, then a couple steps forward kind of progression.

In the meantime, while you're on it and awaiting full benefit, if you are flaring a little, you can take Entocort (oral budesonide, the steroid that's less systemic than prednisone) for a few weeks to tide you over until the Entyvio fully kicks in.
Posted 7/18/2023 1:40 AM (GMT 0)
That was my first choice also..... But I didn't get to try it.... Too much damage and mega colon made it so my GI used Remicade. Entyvio has a much better safety profile for individuals that are concerned about cancer. I don't have the cancer gene but there's a 50% cancer rate regarding my cousins, aunts and uncles. The cancers vary from breast to lymphoma to kidney.... To colon.... and others. So I understand your concerns and the questioning that you do. There are people on here that have had success with Entyvio.

I'd request something to help while waiting for the Entyvio to start working. Try to stay away from Prednisone. It can cause too many additional issues and it's so hard to get off of. Anal medication helps others on here.... (I don't know as I can't use it with my fistulas) so I'd ensure I had some of that stocked away.

My concern for others that are diagnosed is to try to get them to seek help faster than I did, to advocate for themselves, and to trust but verify. I didn't do any of those until after I went septic. I often question if I had gone top down from the beginning if I even would have had fistulas or ended up with a colostomy.

The Mayo Clinic was wonderful for me. They confirmed everything my specialist said but they were wonderful. We frequently consult with them when things are difficult for me. Great doctors.

I think that if you start on Entyvio, see how you are doing... And ensure you get another scope to verify how the medication is helping you--you should hopefully be ok. On me.. they did another scope after 6 months... Eventually we moved it to every year, then every 2 years.... It's important to get your scopes. If you are on the medication and you don't see improvement make sure your doctor is kept informed. I think everyone else has pretty much gone over everything....

Oh and the assistance programs offered do help pay for your meds .... Remicade has one also.

Please let us know how it goes.

Clo
Posted 7/18/2023 11:15 PM (GMT 0)
Thanks for the tips on cost programs - someone from my GIs office called today to enroll me in a program that should hopefully bring my cost down a lot.

Quick question: is it weird that I've never seen blood in my stool? Black or red. The GI said something about how that was because my ulcers weren't near the rectum... But it seems like many other Crohn's patients see blood, no matter where their ulcers are?
Posted 7/18/2023 11:47 PM (GMT 0)
Nah, it's not weird. Blood seen in stool or bowel movements is *very* common in UC, but is a may-or-may-not happen with Crohn's. Many patients with Crohn's colitis do see blood, but many don't. As the GI said, it depends a lot on location of disease activity. UC almost always starts in the rectum, whereas Crohn's often skips the rectum.
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