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20+ Questions for the Longtime UC Patient

Rosanne fullIntroduction:

Central Retinal Vein Occlusion and Macular Edema.

Yes… I am writing about eyes. I have had UC for over 31 years now. About 6 years ago I had what is called a CRVO (Central Retinal Vein Occlusion) It is when there is veins in your eye that leak and cause visual problems. It is quite serious. How I knew I had it…in the middle of the night I woke up and parts of my vision were missing. ie: held my hand up and only saw part. It resolved itself in a few weeks…a few weeks later I had macular edema. The macula in your eye swells and holds fluids. Avastin injections over many months helped to alleviate it. Never had a rhyme or reason for it. They said it happens. I went to a neurologist last week because my vision quivers in that eye. Again no one knows why. Neurologist told me CRVO and Macular Edema is common in UC. REALLY?? Have any of you had it? (I am running out of words here) Link w/info: Copy/paste this and let me know!! I never heard of this in UC before. My GI never said anything either. THANX!

central Retinal Vein Occlusion from wikipedia:

Some more about me:

I am from Western Pennsylvania. 58 female. 31+ years with UC…almost half my life! Have 3 children…was diagnosed 9 months after birth of 2nd. Very easy pregnancy with 3rd child. Healthy & normal…was off meds whole time. Felt great! Only been hospitalized once for UC and that was within 1st year. Flare off and on. Been on prednisone for most of the 31 years. (Had to have my appendix out on 12/21/12..curious if UC patients have their appendix) My bone mass is great…no issues. I take Mercaptopurine, Prednisone and Apriso. Never lost work due to UC. Always made it one way or another. I love to cook and eat…starting to sew again. You won’t find me hiking or running anywhere! Oh yeah…On Tuesday I donated blood for the first time ever!! They always told me I couldn’t because of UC & medications I was on…this time they let me.


I believe I am doing pretty good right now. However about once a week I get the mucky murk in the toilet. Do not know why. Do the others that appear to be in remission have this happen? I try to rest as much as possible whenever I can. I get tired easily.

20+ Questions for the Longtime UC Patient

1. Did any of you have a CRVO and then Macular Edema? Either/or or both?
2. Do you have your appendix? Removed before or after diagnosed? Any difference in your symptoms?
3. Are you able to donate blood? Do you?
4. Even in remission due you get tired a lot? I have a very difficult time getting moving in the morning…just so tired.
5. No matter what ache/pain/complaint I have the docs blame it on UC…inflammatory process.
Do you have undiagnosed nuisance things happening in your body? ie: a pain that hangs around in an appendage (arm/leg/hand/foot) for months and months and one day goes away only to be replaced by a nagging pain in another spot?
6. My heart will race (up to 140 bpm) at a resting position…does this happen to you? I am on Atenolol and it does help. But there are times it happens and I am doing nothing…laying down watching TV!

7. antibiotics…Do any of you ever get prescribed them? Do they cause you to flare up? 2 months ago I got an infection in my finger…the General Practice doctor was very concerned and sent me to an orthopedist. She also prescribed doxycycline…’supposed to be easy’ on the gut. Well with in 2 days, I was waking up with intense pain in my upper right side. Then I started to flare. My gastro said it was very hard on gut. I quit taking it. My finger is still swollen…no rhyme or reason…again… because you have UC. But for the past 2 months I keep smoldering!! Today hasn’t been a good day. I have a lot of murky mucus coming out. It is intense and a fast dash to the bathroom.

If you get antibiotics for anything ever…what do they give you? Do you flare up from them?



prednisone…6 thumbs up
Mercaptopurine….I believe gets me out of the woods.
On both right now along with Apriso…but having issues.

written by Rosanne

10 thoughts on “20+ Questions for the Longtime UC Patient”

  1. Don

    Hi Rosanne! I am from Western PA too! Erie to be exact and I’m 57 years old. Wow! 31 years with UC! I can’t imagine that as I have only had it for 7. Only 7? Seems like a lifetime! Anyways I can answer some of your questions from my experiences.
    1. Did any of you have a CRVO and then Macular Edema? Either/or or both? Nope-never had this thank god.
    2. Do you have your appendix? Still have my appendix
    3. Are you able to donate blood? Do you? No I don’t.
    4. Even in remission due you get tired a lot? No I do not feel tired.
    5. No matter what ache/pain/complaint I have the docs blame it on UC…inflammatory process. It sure seems like it!
    6. Do you have undiagnosed nuisance things happening in your body? Yes I do. In fact right now my foot is hurting. Feels like a bone spur on the side of my foot. Very painful to walk.
    6. My heart will race (up to 140 bpm) at a resting position…does this happen to you? Haven’t experienced this.

    7. antibiotics…Do any of you ever get prescribed them? I am taking a 7 day course of Cipro to prepare for home fecal transplants. I was nervous about taking it but after 3 days haven’t had any issues.

    Good luck and I hope you feel better soon. Check out my blog to see how the fecal transplants are working for me.

    1. Rosanne

      Thanx Don . Donated blood first ever a few weeks ago. Always said I couldn’t because of uc and the meds .

      Hope your ft goes well!

  2. Rosanne

    Appendix… Just want to add: my appendix was removed as out patient surgery. When I had colonoscopy on 12/20/12 pre op I mentioned my lower right side got intermittent pain…. Could it be appendix? Doc liked at me skeptically and said he could look while in there. It was inflamed and looking bad. Boy was he surprised! So much for hypochondria ! Suggested get it out ASAP! Doc believes 6 mp suppressed the symptoms and that is why it did not burst. Anyone else have that happen? At outpatient surgical they said no one walks in for appendectomy .

  3. Hi I have UC for the past 23 years. Been in control for most of the time with sulfasalazine and prednisone.While on prednisone you have all these aches and
    swellings as you mention. But i am off all those now after taking probiotics and in complete remission for the past 3 years. No aches being tired etc.All normal just
    as good as can be.

  4. Lara

    I can’t answer all of your questions, but I can answer some:

    4. Even in remission due you get tired a lot? I do. I’m not sure if this is totally due to my work schedule, but there are many nights when I have to fight to stay awake past 8pm.

    7. antibiotics…Do any of you ever get prescribed them? I definitely cannot handle doxycycline. I was prescribed it when I came down with strep throat & after 2 doses, I called my ENT’s office to say I needed something else. I got the pain, bathroom issues, etc. I was switched to Azithromycin & haven’t had any issues with that at all.

    2. Do you have your appendix? I still have my appendix.

  5. Charlene H

    I’m 53 and have had UC for 25 years.
    1. No eye issues like that.
    2. Still have my appendix
    3. Before UC I used to give blood regularly. Once diagnosed, they stopped taking it. At the time, they had not ruled out transmission through blood. I have given once about 5 years ago. My GI prefers that I leave donating to others.
    4. I am tired all the time. Even when I’m not flaring. My husband thinks it is because I get up to go to the bathroom so many times in the night.
    5. I have joint paint constantly. It moves around. I went two months with my big toe hurting so bad that I could hardly walk, then it just stopped. Next my shoulder would hurt. My lower back hurts most if the time.
    6. I’ve never had my heart race.
    7. Antibiotics, of any kind, usually set off a flare.
    I have also had a blood clot and osteopenia & scoliosis. The fun never ends.

    1. Rosanne

      Hi Charlene! Wow…you made my day. So much in common. Yeah right now my hip/lower spine/leg bothering me. 3 months….going to chiro…helps until I go hem and starts again. I know what you mean about pain joint moving around. After months of agony it is gone and goes to another joint!

      Always tired…could be the night trips…I just never fully rest and reenergize.

      Thank you for your input. Means a lot. I won’t be donating in near future….did it once….sort of a bucket list thing wanting to help at least once. Felt good to do it…but on increased meds now….probably not best thing now.

      Take care! Feel better! Sleep tight!

  6. I’ve had UC for over 15 years but only two major flares – the worst being this summer. I was on Prednisolone for about 2 months.

    I have just also been diagnosed with CRVO in my left eye. Although this is early days as I’ve only had this eye problem for about 2 weeks, I have been told that there is probably no link with my UC.

    As I’m only 47 years old and apparently this is usually a problem in much older people I am interested in any info which may show a link with UC, rather than just being a coincidence.

    I’ve not really experienced any of the other symptoms you mention, except for the tiredness.

    How is your eye now Rosanne?

  7. Rosanne

    Celia…thank you for asking. When I told my GI about CRVO he wasn’t concerned. However there is something online from Japan about a connection to UC.
    A few months after I had CRVO (it got better) I ended up with macular edema. Thought to be because vessels could drain that excess blood from inside eye. I had several or more Avastin injections. It helped. But then I have my vision quiver in that eye. They say don’t know why…hmmm. Now when I had yearly eye check pressure in eye is slightly high. Following it. When I reminded about CRVO they said could be from that and not glaucoma. So that is where I am. Decent vision that quivers and increased pressure. I believe it is connected.
    Thanks for your input. Be sure to remain a squeaky wheel!

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