HealingWell
Search Close Search
☰

Help/tips; enemas, suppositories, stupid UC, flare. ugh!/ partial venting

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/7/2011 5:28 AM (GMT 0)
Ugh I HATE UC. It is so frustrating.  

Flare;

1 week of enema + suppository;

1 week just suppository; then everything pretty close to normal except still having urgency.

Stop all suppositories. feeling good for about 4 days. Then start having a few problems,

1 night suppository; next day good

the day after, awful, took several steps backward (boo)

Tonight: (debated whether to go back to enema or just suppository) decided to just do suppository

1st question: How do you wean off enemas/suppositories?

Ugh. I'm so sick and tired of all this. I know others can relate.

Diet: Mentally, is so tough. I think I tried to go back to my healthy diet (steamed broccoli) too soon. Which annoys me so much. I'm trying to keep my weight in check and it seems like all the foods I tend to eat to do so, I can't eat during a flare. and all the foods I try to stay away from I have to be eating during this flare. Can anyone relate?

I've had too many flare ups over this past 6months-1year. It is so frustrating. I just came to terms that my GI doc, doesn't know crap. So I'm working on choosing the next one. I write her to tell her I'm flaring and I'm starting enemas (first time); what should the plan be? Her response (same as everytime I am flaring) Well let's get blood work, and check stool sample for c diff. everytime. Never tells me how often to use enemas, etc. Never writes to check up. Only writes in response to my notes. I've been with her awhile now, but I still compare to a GI dr I had b4 her. (Had to switch bc insurance changed) I keep trying to find a way to see old dr. She was amazing. I loved her. She would listen to me, ask questions about consistency, how often, etc.

I HATE how UC dictates my life. Can't exercise outdoors away from bathroom. too scary. ETC.

really HATING UC right now. can you tell.

Wish I could go back to full remission, like I was for 3-4 years.

Posted 9/7/2011 2:43 PM (GMT 0)
Well, I'd say you may never be able to go completely without some kind of rectal med. I think I used my enema quite regularly for about 8 years. Recently (like the last 2 years) I haven't felt the need. Probably I'm just being stupid, but I haven't had passed any mucous in a long time, and I don't "feel" like my rectum is inflamed. Sorry.
Posted 9/7/2011 2:50 PM (GMT 0)
I think that you should be completely symptom free for at least two weeks before you try to taper the rectal meds. And, maybe you could only use the enemas if it's a PITA to use both the enemas and suppositories. To me, it sounds like your inflammation is not totally gone, since you are still having urgency, and when you quit using the rectal meds, the flare comes back quickly.

After I got into remission, I waited about three weeks after all symptoms were gone to drop from using enemas every night to every other night. I stayed at every other night for another two to three weeks (and was still symptom-free), until I dropped to twice a week, which is where I've stayed ever since.
Posted 9/8/2011 1:37 AM (GMT 0)
I try not to stay on them too long, bc I don't want to rely on them. I don't want to have to continue using them forever to be normal. Just need to get out of flare.

 

Posted 9/8/2011 2:01 AM (GMT 0)
I'm not trying to be nasty, but that kind of attitude is why you aren't able to get completely out of the flare. Unless you use them until your symptoms are completely gone, I think you'll just keep sliding back into the flare. And are you on remicade? I have to admit that it's sort of strange to be worried about relying on rectal meds when you're on remicade.
Posted 9/8/2011 2:10 AM (GMT 0)
I agree with fruitgirl.
Posted 9/8/2011 8:36 AM (GMT 0)
Maybe colon removal is your best bet. It's a pain doing the meds, relying on them and all, especially for a whole darned lifetime.

Seems you have it all figured out....I'm wondering why you keep asking the same questions and remain in such distress.

Get your colon out, seems you'll be happier without it.

I'll personally rely on my meds till I freaking die, unless they stop working...the the colon will come out.

Gotta love the dependency of those rectal meds...sheesh.

q
Posted 9/8/2011 4:58 PM (GMT 0)
Do I like rectal meds? Heck no but the alternative to not using them is unbearable. I won't live like that and if using an enema (at this point) twice a week will keep me feeling as normal as I'm going to get while still having a colon then I'm going to do them. Do I hate UC absolutely who doesn't? A venting now and then is great because everyone gets frustrated. But coming to terms with knowing that you will need these meds (or others) for the rest of your life is something that you have to do. You won't stay in remission if you go off meds-plain and simple.

My husband just this past weekend said "Wow that really sucks...your going to be on this crap for the rest of your life." I've already been taking stuff 2 1/2 years and he FINALLY GETS IT...kinda. LOL
Posted 9/8/2011 11:10 PM (GMT 0)
Gosh I know we all understand your frustration. This disease is so unpredicable and can be embarassing dealing w/ poops, bathroom, urgency etc....

I have really come to terms w/ using the rectal meds. Of course I was not thrilled about it initially but I was so sick of the UC symptoms that I was willing to try it. Honestly they (knock wood) have worked better for me than anything else. Soooo, I decided to change my attitude. I always say...it is not glamorous using these rectal meds, but it is less glamorous to be running to the john w/ blood etc... I just add it in as part of my routine.... brush, floss, enema. I also attempt to have a sense of humor about it... I named my enema "Ennie" and I tell my husband that I am going to spend some quality time w/ Ennie. I know it is ridiculous, but having a good attitude does help.

Feel free to vent...I know what we all want is to not have this darn disease and wish we were the same before UC. I know I have had many of these moments and I still do. However if the rectal meds will help you feel great, they only take about 2 minutes to do once you get the hang of them and they are pretty safe, I think it is worth staying on them . It is hard to accept the reality but I think you have a better chance of staying well if you keep your eye on the remission goal and just use the rectal meds w/out thinking about it. Good luck!
B
Posted 9/8/2011 11:54 PM (GMT 0)
SurferChick

You are trying to quit enemas/suppositories too soon. Once you come to the realization that they are one of the best medications available (no side effects) you won't think about quitting until you have weeks/months of no symptoms before switching to a less frequent schedule.

You had good results with them. Don't fight success.

about diet: that is what gave me 98% of my remission. Enemas help with inflammation in the lowest area, the last to get attention from meds it seems. But my colon needed more than enemas (and oral meds didn't help me) which is why diet is so important to me. Diet modification doesn't work for everyone and yes it is very difficult. But I had no other choices because I didn't want Remicade, Humira or surgery. YMMV but no weight gain/loss for me in almost 2 years.

Edit: Wanted to edit about enemas having no side effects. Remembered that some here cannot use mesalamine enemas because of 5-ASA intolerance. So there are some side effects. Steroid enemas also do not agree with some people.
Posted 9/9/2011 12:22 AM (GMT 0)
I have had my colon removed and have a j-pouch and I take rectal meds every night. It is keeping me off the more toxic stuff. I had to come to terms that I had this surgery ( really at the time this was the best option ) and still have to take meds. For my humor I  call it the highlight of my day! Either way this disease sucks but at least this is a safe way to keep things as normal as can be.
Posted 9/9/2011 1:06 AM (GMT 0)

imagardener2 said...
SurferChick

You are trying to quit enemas/suppositories too soon. Once you come to the realization that they are one of the best medications available (no side effects) you won't think about quitting until you have weeks/months of no symptoms before switching to a less frequent schedule.

You had good results with them. Don't fight success.

about diet: that is what gave me 98% of my remission. Enemas help with inflammation in the lowest area, the last to get attention from meds it seems. But my colon needed more than enemas (and oral meds didn't help me) which is why diet is so important to me. Diet modification doesn't work for everyone and yes it is very difficult. But I had no other choices because I didn't want Remicade, Humira or surgery. YMMV but no weight gain/loss for me in almost 2 years.

 

To EVERYONE: I'M NOT OPPOSED TO USING THE RECTAL MEDS. I HAVE GOTTEN USED TO THEM. I'M STILL HOPEFUL THAT I WON'T HAVE TO USE THEM FOREVER. TYPICALLY IN THE PAST WHEN I HAVE FLARES, I TAKE PREDNISONE- DEALING WITH THOSE SIDE EFFECTS YUCK. BUT THEN I'M BACK TO NORMAL/REMISSION FOR AWHILE. NOW I AM TRYING THE RECTAL MEDS INSTEAD OF USING PREDNISONE. SO I'M TRYING TO USE THE MEDS TO 'PUT OUT THE FIRE'/FLARE. AND GO BACK TO NORMAL. AND NOT HAVE TO TAKE THE RECTAL MEDS. PRIOR TO 2010/2011, I WAS IN REMISSION (GETTING REMICADE EVERY 8 WEEKS) FOR 3-4 YEARS.

i AM A LITTLE FEARFUL THAT MY BODY WILL GET TOO USED TO THE RECTAL MEDS AND WILL COME TO RELY ON THEM TOO  MUCH. AND THAT I WON'T BE NORMAL WITHOUT THEM. AGAIN, I'M NOT AT THE POINT YET TO THINK THAT I NEED TO USE THE RECTAL MEDS FOR THE REST OF MY LIFE. I'M STILL HOPEFUL THAT I CAN JUST USE THEM TO GET THROUGH FLARE. AND THEN BE OFF. I TAKE METHOTREXATE AND GET REMICADE AS MY ONGOING MAINTANCE.

I'M DUE FOR REMICADE NEXT WEEK AND I'M SEEING NEW GI DOC IN about 2 WEEKS. YEAH! PRAYING HE IS SMARTER THAN MY CURRENT GI DOC, WHO I'M NOT HAPPY WITH. BETWEEN EVERYONE ON HERE AND NEW GI DOC I'M PRAYING THAT I CAN GET BACK TO REAL REMISSION BY OCTOBER. 

Posted 9/9/2011 1:13 AM (GMT 0)
Do you do 2 hours of cardio a day? That is a lot of exercising, especially while flaring when your body needs rest.

Its really pretty simple what you should do regarding the rectal meds. Your incompetent doctor should have told you this. Keep taking them until you have absolutely no symptoms. Then still take them for a few weeks after that. Then you can start to think about very slowly tapering.

It seems the rectal meds are working for you since you improve while using them, but your symptoms keep coming back because you quit them before your body has completely healed.
Posted 9/9/2011 1:33 AM (GMT 0)
surferchick:

I'm going to have to agree with the others...you need to stay on the rectals consistently until you have no symptoms, then taper down.  If you want to taper all the way off that's your choice but you have to get the inflammation under control before you taper, otherwise why bother?

I don't think you will become dependant on the rectals in a matter of weeks...if ever really, they are topical.

For me, the urgency was the last to go, and there were a few backslides along the way.  Hang in there.

I hope you feel better.

Posted 9/9/2011 1:37 AM (GMT 0)

Sara14 said...
Do you do 2 hours of cardio a day? That is a lot of exercising, especially while flaring when your body needs rest.

Its really pretty simple what you should do regarding the rectal meds. Your incompetent doctor should have told you this. Keep taking them until you have absolutely no symptoms. Then still take them for a few weeks after that. Then you can start to think about very slowly tapering.

It seems the rectal meds are working for you since you improve while using them, but your symptoms keep coming back because you quit them before your body has completely healed.

 

I HAVE ACTUALLY STOPPED WORKING OUT THAT MUCH. THAT HAS PROBABLY BEEN WHAT HAS CAUSED SO MANY FLARES IN THE PAST YEAR. I HAD BEEN WORKING OUT 7 DAYS A WEEK FOR MORE THAN 2HRS AT A TIME. THUS NOT GIVING MY BODY ANY REST. I HAVE FINALLY RECOGNIZED THIS. LAST WEEK I WORKED OUT FOR AN HOUR ON MONDAY AND AN HOUR ON FRIDAY. THIS WEEK IVE WORKED OUT A FEW DAYS, BUT HAVE ONLY DONE 45MIN-1HR LOW KEY.

I AGREE I HAD A STUPID DOC. PRESCRIBED THE RECTAL MEDS WITHOUT TELLING ME HOW LONG TO BE ON THEM, ETC. HENCE, ME TRYING TO FIND THE ANSWERS ON HERE. AND NOW FINDING A NEW GI DOC.

I AGREE WITH YOU AND EVERYONE WHO HAS SAID I PROBABLY STOPPED THEM TOO SOON. I WAS TRYING TO START TO TAPER AS SOON AS I HAD NO SYMPTOMS. THIS TIME I WILL STAY ON THE MEDS FOR A FEW WEEKS, AFTER MY SYMPTOMS HAVE STOPPED, GIVING EVERYTHING EXTRA HEALING TIME. I ALWAYS NEED TO REMIND MYSELF 'SLOW AND STEADY WINS THE RACE.' BUT I'M A RUNNER, COMPETITOR, ETC, WHERE IT'S ALL about DOING THINGS FAST AND FINISHING FIRST.

Posted 9/9/2011 2:19 AM (GMT 0)
I totally understand! It's hard to be patient with this disease. I hope you are able to feel better soon.
Posted 9/9/2011 2:29 AM (GMT 0)

SurferChick said...
Sara14 said...
Do you do 2 hours of cardio a day? That is a lot of exercising, especially while flaring when your body needs rest.

Its really pretty simple what you should do regarding the rectal meds. Your incompetent doctor should have told you this. Keep taking them until you have absolutely no symptoms. Then still take them for a few weeks after that. Then you can start to think about very slowly tapering.

It seems the rectal meds are working for you since you improve while using them, but your symptoms keep coming back because you quit them before your body has completely healed.
I HAVE ACTUALLY STOPPED WORKING OUT THAT MUCH. THAT HAS PROBABLY BEEN WHAT HAS CAUSED SO MANY FLARES IN THE PAST YEAR. I HAD BEEN WORKING OUT 7 DAYS A WEEK FOR MORE THAN 2HRS AT A TIME. THUS NOT GIVING MY BODY ANY REST. I HAVE FINALLY RECOGNIZED THIS. LAST WEEK I WORKED OUT FOR AN HOUR ON MONDAY AND AN HOUR ON FRIDAY. THIS WEEK IVE WORKED OUT A FEW DAYS, BUT HAVE ONLY DONE 45MIN-1HR LOW KEY.
I AGREE I HAD A STUPID DOC. PRESCRIBED THE RECTAL MEDS WITHOUT TELLING ME HOW LONG TO BE ON THEM, ETC. HENCE, ME TRYING TO FIND THE ANSWERS ON HERE. AND NOW FINDING A NEW GI DOC.
I AGREE WITH YOU AND EVERYONE WHO HAS SAID I PROBABLY STOPPED THEM TOO SOON. I WAS TRYING TO START TO TAPER AS SOON AS I HAD NO SYMPTOMS. THIS TIME I WILL STAY ON THE MEDS FOR A FEW WEEKS, AFTER MY SYMPTOMS HAVE STOPPED, GIVING EVERYTHING EXTRA HEALING TIME. I ALWAYS NEED TO REMIND MYSELF 'SLOW AND STEADY WINS THE RACE.' BUT I'M A RUNNER, COMPETITOR, ETC, WHERE IT'S ALL about DOING THINGS FAST AND FINISHING FIRST.

What in the world are you doing to your posts, lol?
Posted 9/9/2011 3:32 AM (GMT 0)
DR-A

I WAS TRYING TO DISTINGUISH MY RESPONSES FROM WHOM I QUOTED, SINCE I CANT SEEM TO WRITE BELOW/OUTSIDE OF BOX. AND I GOT STUCK ON USING CAPSLOCK. ITS EASY. DOES IT COME ACROSS AS BAD? ONE OF THOSE TRICKY WRITING/AND READING FROM A COMPUTER SCREEN THINGS. HOW THINGS CAN BE CONSTRUED THE WRONG WAY.
Posted 9/9/2011 6:40 AM (GMT 0)
cut out the caps.

Go on the enemas and stay on them. We've made the suggestion a gazillion times. Just do it.

Do you understand that UC starts at the rectum? When you flare, even the most minimally, that's what will be affected first. When you heal, the rectum will still be reactive, hence the suggestion of rectal meds.

In reality, aside for the pred...remicade should be your most fearful med which will probably eventually stop working. My opinion. It seems to have lessened in its effectiveness already.

Stay on the enemas nightly until you're off the pred...then see how you are at that point.

Dependency is where your mindset is skewed. Flaring needs treatment, the rectals are just that. And if you are so fearful of the dependency, you will miss most important symptoms and choose to ignore them until you get to the point where your flaring is bad enough to ignore.

Maintenance rectals are a good concept compared to other meds...we all have our fingers crossed they will hold for us forever.

You have UC. Rarely does one never need meds or maintenance.

q
q
✚ New Topic ✚ Reply