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What Should I do? Severe Rectal Bleeding for 7 months!

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Ulcerative Colitis
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Posted 1/6/2020 7:53 PM (GMT -5)
I have been diagnosed with Ulcerative Colitis in 2016. I have had rectal bleeding since May 2019. Yesterday, I was looking at my food diary from Cronometer to find out what caused the bleeding in May, but I don't know what it is. I was eating a Paleo diet since April 2019.

I went to the hospital in June but they did not do anything. I also had a colonoscopy in August. The results were there was inflammation and I had to take a stool test. The results of the stool test were there was inflammation.

I take my medicine for Ulcerative Colitis daily at the same time. I still have the bleeding every day and every time I use the bathroom. It is now January 2020. This has been going on for 7 months! I'm so frustrated. I don't know what to do. All my doctor does is give me blood and stool tests and give me the results.

I can barely tolerate many foods anymore. Fruits and vegetables make me bloat and gassy. I cannot tolerate gluten, I'll get diarrhea and cramping. I get gas and bloating from dairy. I removed so many foods from my diet in an attempt to stop the bleeding. I removed grains, legumes, seeds, nuts, fruit, vegetables, eggs, and dairy. All I'm eating is chicken, fish, and sweet potato every darn day. The bleeding looks like it is my period coming out of my butt. When I look at my underwear I see a little blood. I feel so cursed to have such a stupid disease!
Posted 1/6/2020 8:37 PM (GMT -5)
Sounds like you're going to have to go to the next level of treatment options. What are you taking now? What kind of U.C. do you have (proctitis, left-sided, pan colitis)? If you are only using mesalamine, you may have to add azathioprine. Have you tried rectal meds? Rectal meds would make sense if your main symptom is rectal bleeding.
Posted 1/6/2020 9:33 PM (GMT -5)
I am taking Apriso(mesalamine). I do not know what kind of UC I have. No, I never tried rectal meds before.
Posted 1/6/2020 10:33 PM (GMT -5)
Were you diagnosed with a colonoscopy originally? If so, ask for the pathology report which will tell you where the inflammation is. If you've never had one, you need to have a colonoscopy with biopsies, otherwise, you are going pretty much blind.
No harm asking your doc for mesalamine enemas regardless. They can be super effective at getting rid of inflammation in the rectum and sigmoid.
As for food, many of us have found that diet can help, but rarely gets you out of a flare.
Posted 1/6/2020 10:47 PM (GMT -5)
It's not the food. It's nothing to do with diet. You need to go see a GI and get proper treatment. Get a proper diagnosis and work with a IBD specialist to find a plan that works for you. having uncontrolled long-term inflammation is not good for your health. You should also have stool tests to check for pathogenic causes, but the length of time you've been suffering indicates something chronic.
Posted 1/6/2020 11:00 PM (GMT -5)
Hi welcome to the forum.
In addition to all of the above....I'm shocked you have never had rectal meds, especially to be flaring for this long without prescription of them. I suggest foam steroid to use during the day and mesalamine enemas at night. Don't settle for suppositories if that's offered...enemas, and lots of refills.
q
Posted 1/7/2020 12:58 AM (GMT -5)
Agreed you need to be on rectal meds and diet doesn't cause bleeding
Posted 1/7/2020 6:12 AM (GMT -5)
I go to a GI specialist and I see him every three months. I was diagnosed by colonoscopy when I had rectal bleeding In the last one he showed me this paper that shows the GI tract, I guess it was the pathology report. He explained there is inflammation in the entire colon. He also gives me stool tests regularly like every other blood test I take. The results of the blood test that there was inflammation.
Posted 1/7/2020 8:51 AM (GMT -5)
time for a new doctor - are you in the US ?

TT
Posted 1/7/2020 9:05 AM (GMT -5)

konachan982 said...
He also gives me stool tests regularly like every other blood test I take. The results of the blood test that there was inflammation.


Stool tests for U.C. are for pathogens in your gut (infections). You already know you have inflammation, so it seems pointless to test for that.
Rectal meds are effective for pan colitis because most of the worst symptoms are caused by inflammation on the left side and rectum (bleeding and urgency especially), and because inflammation always starts in the rectum and moves up during a flare. Some doctors haven't figured that out so you need to insist on getting the rectal meds.
Posted 1/7/2020 9:10 AM (GMT -5)
I am confused. Have rectal meds been discussed at all? He says you have inflammation throughout the colon...have a nice day? Why no further treatment?

In regards to your diet, try to fit in some vegetables where you can. Even if it is one pea today then two tomorrow and see how it goes. Don't overreact to changes in UC activity. You can end up with an irrational fear of foods that is not warranted.

Post Edited (Uniform Charlie) : 1/7/2020 7:15:28 AM (GMT-7)

Posted 1/7/2020 10:40 AM (GMT -5)
What dose of Apriso? You should be on the maximum if you're flaring. I would also add rectal medication as everyone has mentioned. Eating easy to digest food is smart while you're flaring, but it won't cure you. Perhaps you should ask your GI about the next tier of medication, and about rectal medication. It's good to stay ahead of things.
Posted 1/7/2020 2:27 PM (GMT -5)
having to ask your doc what he thinks of turnip greens as a viable treatment I understand - having to ask your doctor to act like a qualified doctor and prescribe appropriate meds is ludicrous !
Posted 1/7/2020 3:19 PM (GMT -5)
What country are you in? Moving up the med ladder is common in the US.

The meds you are taking is not preventing the inflammation. For a few people with food intolerances, elimination diets can help. Mostly diet can help manage some symptoms and reinforce meds. Usually diet changes cannot stop a flare. Diet may be more helpful for maintenance, but this is very individual.

You need a different mesalamine, or oral + rectal mesalamine, or add one fo the new biologics. But something has to change.

Also, given the amount and duration of bleeding, you should be checked for anemia. You might need iron infusions.
good luck
Posted 1/7/2020 5:05 PM (GMT -5)
My blood tests show I do not have anemia. Yes, I am in the US. For Apriso, I take 4 capsules daily at the same time. He never mentioned rectal meds which is why when you mentioned it I was surprised such medicine existed before. Thank you for taking the time responding to my posts.
Posted 1/7/2020 5:59 PM (GMT -5)
What has your doctor suggested that you do? If all he is doing is test and test without recommending a change in treatment you are either going to have to ask for specific treatments (such as rectal meds at a minimum) or find a new doctor who will actually treat you. What you are doing is not enough.

btw ... many docs don't recommend rectal meds for some reason ... and others will say that they won't do any good if you have pancolitis (not true -- they hit the lower part of the colon where most of the blood usually comes from). Ask for mesalamine enemas and look for tips on how to use them for best results
Posted 1/8/2020 12:26 AM (GMT -5)
Please update us once you talk with your GI.
q
Posted 1/8/2020 6:31 AM (GMT -5)
Ok. I will be seeing my GI in February so I'll update then.
Posted 1/8/2020 10:05 AM (GMT -5)
please don't wait till February - call your doc today and ask for rectal mesalamine - there should be absolutely no reason for any delay in getting you a script !
Posted 1/8/2020 12:25 PM (GMT -5)
Agree with TT above -- call you doc today and ask for a prescription for mesalamine enemas. No reason your doc should deny this request. If he does I strongly urge you to find another doc. There's no reason for you to continue flaring for another month without at least trying the enemas. By the time you have your appt you would know if they help you or not. If not, then you need to move to a higher tier drug (Imuran or biologics)

I have found with this disease we have to be our own patient advocate. Learn all you can about possible treatments and meds so that you can talk with your doc.
Posted 1/8/2020 1:00 PM (GMT -5)
Ohhhh...I thought you would be calling him asap.
Call and request the meds.
I hope you understand the urgency we're placing on your situation regading our suggestions?
q
Posted 1/8/2020 8:13 PM (GMT -5)
OK sure, I'll call him as soon as possible and ask about rectal mesalamine and update you all. Thanks for the suggestions they were helpful.
Posted 1/9/2020 3:16 AM (GMT -5)
Uceris Foam
Posted 1/27/2020 7:20 AM (GMT -5)
It is not working and I'm still bleeding. I'm about to give up I feel like it will never stop bleeding. I don't know what to do at this point. What should I do? Also I recently bought a probiotic called VSL#3. Do you think it can put me into remission?
This study showed there was a 77% rate of remission when VSL#3 was treated in patients with UC.
https://www.ncbi.nlm.nih.gov/pubmed/15984978

Post Edited (konachan982) : 1/27/2020 5:31:00 AM (GMT-7)

Posted 1/27/2020 8:25 AM (GMT -5)
Were you successful in getting and then trying rectal meds? How long have you been on them?

VSL DS#3 did absolutely nothing to help my UC, it did turn me into a fart-monster though, worst flatulence in my life.

Do you have any hemorrhoids? I do, and have been bleeding for years, it's not my UC causing this bleeding.
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