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Ulcerative Colitis
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Posted 3/21/2018 8:37 PM (GMT 0)
My name is Alan. I am 24 now, and was diagnosed 3 years ago with Ulcerative Colitis. I did almost 6 years in the Coast Guard and was recently discharged because I have been put on Remicade infusions as treatment.

I am curious to know what other people have experienced as I get asked a lot if I have had a flare up. I think my situation is different. For the past 3-4 years I have had constant bleeding. At the beginning, it was really bad. I went a year without seeing a Dr. as I was afraid I would be kicked out of the military. I had a LOT of blood in my stool and this carried on for some time but has never really stopped. At first I was put on prednisone and budesinide..? sorry I can't remember the correct spelling in conjunction with infusions every 4 weeks. After it didn't help, I saw an expert here at Baylor in downtown Houston who said my issue is in the lower part of my colon and I should try enamas and the cortisone suppositories? I tried this for a bit, but I never saw a difference. To this day I still have blood in my stool, granted it's not as much as it use to be, but has become a norm. Also a lot of mucus and slight side cramping or pain and it increases usually after a meal. I haven't been able to pin point what causes cramping for me as I have tried all kinds of different diets and had no change in anything. At one point I went up to 8 weeks in between infusions then as things didn't change I went to 6 weeks and now I'm back to every 4 weeks. I usually see the bleeding stop for a day or two after each infusion but it always comes back.

Long story short, does anyone else have constant bleeding? Because of this I'm not sure what's technically a "flare up" as it seems I'm always bleeding.

I keep researching different diets and foods that effect the situation and some day I hope to figure out a solution to this chaos. My grandfather recently passed away due to cancer and I have a family history of cancer.. was told one auto immune disease usually means another is in route. I'm hoping to stay alert and find out what I should and shouldn't be doing with my body.

Thanks,

Alan
Posted 3/22/2018 12:30 AM (GMT 0)
Keep up on the research and don't give up. Along with my regular meds, I use ginger root tea for minor arthritis relief. Ginger is an anti-inflammatory; or so I've read. I've been getting Remicade infusions for over 20 years. I do not have constant bleeding, but have no doubt that others on this forum do. Seems to just be part of the 'curse'. Try not to stress too much and try to stay on top of the UC. Best of luck in your journey.
Posted 3/22/2018 3:01 AM (GMT 0)
Alan,
Constant bleeding means you are flaring. Your goal is remission. Remission is absence of all symptoms. The longer you can maintain remission, the better your chances for not getting cancer. Blood, urgency, diarrhea and increased frequency are all signs of flaring...even if you only have one symptom. The only other explanation for blood is a hemorrhoid but the blood would be minimal and usually just when wiping or on the end of your formed stool. Are you getting regular colonoscopies at least once a year to check progression of the disease?

You mentioned infusion. Which infusions are you getting? Sounds like they aren’t working and you may need to move to a different class of drug.
Posted 3/22/2018 4:42 AM (GMT 0)
Even though I have pancolitis, most of my recent flares have been on the left side. I always find the inflammation in the rectum and sigmoid is the hardest to get rid of.

If Remicade isn't getting you into remission, perhaps you should try something like Entyvio?

What kind of enemas did you use? Mesalamine or steroid? When you first start taking mesalamine, it can take a while before it kicks in (a month or two). Did you give it that long?

I've never found that oral mesalamine does much for the rectum and sigmoid. By the time it gets there, it is just passing through, and has been partially absorbed. The rectals pack a bigger punch for me in that area.
Posted 3/22/2018 5:36 AM (GMT 0)
I had bleeding almost daily for two years, while I played pharmaceutical roulette with a dozen drugs and various diets that did not work well enough. Eventually I found a combination that works better for me and I have not had bleeding in more than a year.

I think kulinarykidz may be right; maybe you need a new drug.
Posted 3/22/2018 12:47 PM (GMT 0)
Ditto all of the above: you are flaring constantly for years and have not yet experienced a remission. Flares can alternate between worse and not as bad, over and over again. The cramps/discomfort is from the flare and might be from the inflammation and/or trapped gas.

It sounds like you've tried many things individually, however have you combined any? I ask as it often takes a lot of medications simultaneously to achieve a remission. There's seldom any one medication that is 100% your solution, rather the cumulative affect of multiple medications taken simultaneously might equal 100%. For me, I achieved a remission using remicade, and 6mp, and lialda, and rowasa enemas, and prednisone simultaneously.

Bleeding can be the first symptom to go away or the very last to go away; varies a lot for us.
Posted 4/5/2018 4:13 PM (GMT 0)
Thanks everyone for the replies, I did not expect that many. I have had two colonoscopies, and they do indicate the flaring is in the lower part of my rectum. I saw an expert at Baylor and they said the mesalamine enemas should work, but I used them for a few months along with a cortifoam/suppository with no luck. Also something right now that's really been bothering me is costocondritis.

A few months back I had costocondritis really bad, and I had never heard of it until I got it, but it was so bad I was gasping for air, I slept for almost a week straight thinking I was going to die. I was in so much pain, real pain, felt like being stabbed in my ribs every time I would breath, and recently it has came back, but not as bad. It's came back twice now in the last few weeks, and recently been occurring for a few days in a row. The first time it happened and was so bad after a week of it my family made me go to the ER, but they really pushed it to the side and told me there is nothing they could do. I feel like since it's reoccurring maybe there is something else wrong. I usually get infusions every 4 weeks, and since I got out of the CG due to this condition, my insurance dropped and I missed my 4 week infusion. I just recently got my coverage back and registered at the VA, so hopefully I can get an infusion soon, but I'm not so sure that has to do with costocondritis. Anyone else had this problem?
Posted 4/5/2018 4:23 PM (GMT 0)
This is how my situation was in June 2017. I wasn't in any pain so I decided to ignore it for the most part. I went to my doctor, sure, but he was more so leaning toward it being hemorrhoids or a stomach ulcer.

When you're not in pain it's easy to dismiss it. But let me tell you. This started for me in June 2017, and by the time November 2017 rolled around, it's like someone flipped a switch. The abdominal cramping and spasming came on and would NOT STOP, not for ONE second.

Long story short, I had to spend two months in the hospital. I was malnourished, anemic, the whole nine yards. I didn't think the bleeding would eventually turn into the disaster that it did....

Currently going anemic again and getting scheduled for iron infusions before it turns into getting an emergency blood transfusion (again). That's the part that makes me nervous about your situation: the blood loss. If it goes on for too long you could need a transfusion...
Posted 4/5/2018 5:26 PM (GMT 0)

IntestinalWasps said...
This is how my situation was in June 2017. I wasn't in any pain so I decided to ignore it for the most part. I went to my doctor, sure, but he was more so leaning toward it being hemorrhoids or a stomach ulcer.

When you're not in pain it's easy to dismiss it. But let me tell you. This started for me in June 2017, and by the time November 2017 rolled around, it's like someone flipped a switch. The abdominal cramping and spasming came on and would NOT STOP, not for ONE second.

Long story short, I had to spend two months in the hospital. I was malnourished, anemic, the whole nine yards. I didn't think the bleeding would eventually turn into the disaster that it did....

Currently going anemic again and getting scheduled for iron infusions before it turns into getting an emergency blood transfusion (again). That's the part that makes me nervous about your situation: the blood loss. If it goes on for too long you could need a transfusion...

I'm just not sure how much blood loss is enough to make that necessary as right now it seems minimal compared to when I first started, but maybe I'm just so use to seeing it I don't think it's much? I hope you get things figured out that sounds awful!
Posted 4/5/2018 5:29 PM (GMT 0)

IntestinalWasps said...
This is how my situation was in June 2017. I wasn't in any pain so I decided to ignore it for the most part. I went to my doctor, sure, but he was more so leaning toward it being hemorrhoids or a stomach ulcer.

When you're not in pain it's easy to dismiss it. But let me tell you. This started for me in June 2017, and by the time November 2017 rolled around, it's like someone flipped a switch. The abdominal cramping and spasming came on and would NOT STOP, not for ONE second.

Long story short, I had to spend two months in the hospital. I was malnourished, anemic, the whole nine yards. I didn't think the bleeding would eventually turn into the disaster that it did....

Currently going anemic again and getting scheduled for iron infusions before it turns into getting an emergency blood transfusion (again). That's the part that makes me nervous about your situation: the blood loss. If it goes on for too long you could need a transfusion...

Also curious because of your sig, I have had high ALP results several times for my liver, and I also gained weight while on prednisone so it seems like I'm similar to you, what were your results that let you know you were having liver issues?
Posted 4/5/2018 5:52 PM (GMT 0)
The numbers for my liver were off the freakin' chart. It was INSANE. It was so bad that I actually had to stay in the hospital until they improved and until I was strong enough to try a different infusion.

I believe they were monitoring it closely due to the blood loss I experienced, and also due the fact that Remicade can be a punch to the liver even for those who aren't sensitive to it... - The biggest issue is that I developed a CMV infection (which can destroy your liver) and they didn't notice it until I had my first dose of Remicade. So it was a two'fer punch to my liver.

Prednisone stopped working for me, my liver was damaged from the CMV and Remicade. My GI doctor threw her hands up and took me out of that particular hospital system. She crossed a line in doing this, but she transferred me to the hospital she did her residency at, where all of the "guru's" were.

They switched from Prednisone to Tacrolimus which REALLY helped me out. Tacrolimus is a pill biologic as opposed to a steroid (they use it for patients who receive organ transplants, so their bodies don't reject their new organs). I'm not sure why more GI's don't use it as an alternative to steroids...

But back to the subject. Your liver enzymes should be monitored if you're experiencing blood loss or receiving new infusions. Also, if you're having random swelling that they can't trace back to any other medications, they'll monitor your liver enzymes for that reason as well, as organ damage/failure can cause your feet/legs to swell.

At the end of it all, I had to get a blood transfusion because my numbers went off the charts.
Posted 4/5/2018 6:40 PM (GMT 0)

IntestinalWasps said...
The numbers for my liver were off the freakin' chart. It was INSANE. It was so bad that I actually had to stay in the hospital until they improved and until I was strong enough to try a different infusion.

I believe they were monitoring it closely due to the blood loss I experienced, and also due the fact that Remicade can be a punch to the liver even for those who aren't sensitive to it... - The biggest issue is that I developed a CMV infection (which can destroy your liver) and they didn't notice it until I had my first dose of Remicade. So it was a two'fer punch to my liver.

Prednisone stopped working for me, my liver was damaged from the CMV and Remicade. My GI doctor threw her hands up and took me out of that particular hospital system. She crossed a line in doing this, but she transferred me to the hospital she did her residency at, where all of the "guru's" were.

They switched from Prednisone to Tacrolimus which REALLY helped me out. Tacrolimus is a pill biologic as opposed to a steroid (they use it for patients who receive organ transplants, so their bodies don't reject their new organs). I'm not sure why more GI's don't use it as an alternative to steroids...

But back to the subject. Your liver enzymes should be monitored if you're experiencing blood loss or receiving new infusions. Also, if you're having random swelling that they can't trace back to any other medications, they'll monitor your liver enzymes for that reason as well, as organ damage/failure can cause your feet/legs to swell.

At the end of it all, I had to get a blood transfusion because my numbers went off the charts.

Prednisone did nothing for me or my co worker who is same age, same condition, same meds. In fact, I feel like prednisone made things worse and I haven't met anyone who it actually helped. I'm not really sure what to do now except keep getting my infusions every 4 weeks, hopefully soon I can get another one. I haven't had a lab test done in a bit so I'm not sure what my levels are looking like now. I'm sure the VA will run results when I go in for my initial evaluation as well as my new PCM who's not a military doc.
Posted 4/5/2018 6:46 PM (GMT 0)
I was in tears when my new hospital told me they were going to put me back on it. I threw a fit like a child. So yeah that's why they switched me to Tacro. LOL.
Posted 4/5/2018 8:04 PM (GMT 0)

IntestinalWasps said...
I was in tears when my new hospital told me they were going to put me back on it. I threw a fit like a child. So yeah that's why they switched me to Tacro. LOL.

I see you are in Texas as well, have you ever seen any gastro docs in Houston?
Posted 4/5/2018 8:12 PM (GMT 0)
I have not! I'm actually within the UTSW system (I LOOOOOVE THEM!) - But I deal in medical equipment, so I know the guys down in Houston (Baylors and such) are the real champs.
Posted 4/5/2018 8:19 PM (GMT 0)

IntestinalWasps said...
I have not! I'm actually within the UTSW system (I LOOOOOVE THEM!) - But I deal in medical equipment, so I know the guys down in Houston (Baylors and such) are the real champs.

Ah okay!
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