A variety of questions

Diseases & Conditions Ulcerative Colitis
1

I haven’t been around for a bit and things have been going pretty well, but I’m always wondering how this disease functions for others in various ways. I feel like I’m always playing this game of Clue with my body and maybe if even one other person experiences something similar, I can put questions to rest. So here are a few in no particular order:

  1. As a 50 year old female, I am at that pre-menopausal/menopausal point in life. This, of course, means hormonal changes, which have always been a trigger for symptoms for me. With my last pregnancy I flared at the beginning and about a month after delivery which eventually landed me on Entyvio. Any women who went through menopause while having UC? Do you think it affected you symptom-wise? If you’re past menopause, did those symptoms resolve?

  2. Does being in complete remission mean absolutely no symptoms of UC? It makes logical sense that it would, but that has not been my experience, which is backed up by clinical findings (i.e. clear scope, clear biopsies, and normal bloodwork).

  3. In remission, do you experience any issues related to particular foods? What symptoms and what foods?

  4. Do you have other digestive issues besides UC that make distinguishing one from the other difficult? What are they?

If you are willing to respond, thank you in advance!

2

Disclaimer…my experience probably won’t be your experience. So far Ive been on the “bad, ugly, worse case scenario” spectrum…so as you read this response…keep that in mind.

My diagnosis started out as UC in 2012 and it was eventually changed to Crohns in 2015. Some of the information and recommendations did not change with the diagnosis change. Ive had several different doctors. The females in my family are notorious for late onset menopause…think 60 (at the earliest) before you stop having the monthly visitor. I got sick very quickly and went thru menopause suddenly and early…55 to 58?

1.) Menopause and hormones changes…the majority of my GI doctors have indicated that estrogen levels and fluctuating hormon levels can impact disease and flaring. I was placed on Estradiol (by my urogynocologist and PCP) to help combat recurring UTIs. (Age was around 58) My UTI and my Crohns symptoms both improved. I was on it for several years. I went off, had some issues, and now I take 1 to 2 mg of Estradiol once weekly to keep my Estrogen levels at 28 to 30. They still check my levels at least twice a year. My PCP, urogynocologist, gynecologist immunologist, Infectious disease, colorectal surgeon and cancer doctor work with my GI to make sure I am safe. When my estrogen levels go below 28 I get UTIs, infections, and have more GI problems. When my estrogen level is over 34 I feel pretty good but my uterus lining thickens and I start growing fibroids that we have to surgically remove. If your doctor recommends hormone treatment please make sure they check your levels and monitor you.

2.) Remission. Every GI doctor that I see (I travel so I see my main team in one state that works with the states I frequently travel to…which makes a total of 4 teams) ALL my GI teams indicated that remission is different for every person. There are patients that have total remission with no symptoms while on medication and others may improve but not achieve total remission. I have an aggressive form of fistulizing Crohns. I still have symptoms but they are usually manageable. I am as good as I am ever going to get. I have a friend…no symptoms…so it depends.

3.) I still have to watch and keep track of what I eat. I know to stay away from canned tomatoe based products, cayenne pepper, deep fried foods, and a few of my other trigger foods because they cause abdominal pain and nausea. Its not everyday. I just have to listen to my body. If something doesnt sound good I dont go near it. Red meat, fresher vegetables or fruits, or some types of fish can be eaten in the 3 weeks after my Remicade infusion but no later than 23 days after my infusion as they will cause an obstruction. There are additional foods but you get the general idea. I have a friend that still has a very limited number of foods she can eat and another that can eat anything as long as she’s on medication.

4.) I do have other issues…such as a colostomy, diverticulitis, barretts esophagus, abdominal growths… I can usually tell the difference between them because we have been working with them for awhile.

Please note that my experience probably won’t be yours. It can help having examples to look upon…but remember that everyone is different. I have joined a few support groups and we meet once a week to discuss things. Having them is nice to bounce ideas off of BUT Always find the best doctors you can and reach out to them also.

Please let me know if you have questions.

Clo

3
  1. When I was in menopause I really didn’t experience any major symptoms. I took black cohash which helped me a lot.
  2. Remission, to me, means no symptoms
  3. I still watch what I eat
  4. I have always had minor stomach issues.
4

Just my experience:

  1. I went through menopause while having UC. I did not notice any impact on my UC.
  2. For me complete remission means I have no symptoms other than I fatigue more quickly than most people, and am more prone to dehydration.
  3. In remission I have no issues with any particular foods aside from alcohol. That is the one item I am careful with how much and how often I consume. Not a bad thing to do anyway.
  4. No
5

Thank you all for sharing your experiences. I know everyone can be so different but often you will find some patterns or commonalities. Or even if you find one other person that experiences something then you’re not some bizarre anomaly (or maybe you’re just two bizarre anomalies, lol!). I guess I think if I can figure out some of the quirks of my body I can manage them more reliably. Like if I figure out it’s this particular food and not the UC, I can just avoid that food (or eat it and just expect to pay for it later, lol!). Don’t get me wrong, I have done very well in the management of my disease and lead a very normal life for which I am very grateful. I just still have weird stuff that sometimes happens (often unpredictably) despite being in remission and I play detective to try and figure out if any of it is avoidable if I just do x, y, or z.

I appreciate you all!

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6

I was going through menopause when I was first diagnosed. I don’t think it had anything to do with UC. I did use CombiPatch hormone replacement for several years to manage menopause symptoms.

I am in remission since 2021 (confirmed by scopes) and my BMs are not perfect every day. Depending what I eat they can be looser or harder. Once in a while I will have a bout of diarrhea that clears quickly. It freaks me out sometimes, but then I remind myself that “normal” people have issues at times otherwise we wouldn’t have Pepto for diarrhea or Miralax for constipation lol

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7

True, true. I tend to think I have those issues more than the normal person, but then I don’t really know what constitutes normal. I do know that other things I experience aren’t what a normal person would, but absent inflammation I don’t know what the cause of that would be unless it’s dietary. I did start having digestive issues long before I had my first UC flare.

I did notice somewhere along the line after diagnosis that I will have irregular bowels in the week leading up to my period and then return to normal a day or two into it. And the hormone shift in early pregnancy and hormone dump after childbirth are known triggers, which I experienced, so I assume it’s possible the hormone fluctuations of menopause could cause similar issues. Of course not every woman experiences all these things in the same way either. I don’t use or plan to use any HRT or supplements, in part for fear of making anything worse or causing a new problem. One thing I’d love to do is make my sleep better because right now it most often sucks which also affects my digestive system. Magnesium is the most common recommendation for that but guess what it can cause? Diarrhea. Yay.