What is going on with me? Updated Advice please!

So, what meds are you NOT taking?  You should at least give them a try.

Hope you feel better soon!

ElaineNY

Don't get scared.  Left-sided pain is typical of ulcerative colitis as you said you have.  Put some heat on it - you know heating pad or microwave heat thingy.  Try the enemas.  At first you probably won't get a lot to stay in but it gets easier and you will feel better.  Also, take whatever pain meds you use - I can only use Tylenol but that helps.  As you heal, the left-sided pain will turn into just discomfort and then subside. 

As for anxiety - also goes along with it unfortunately.  Try to relax, think positive and call your doc for reassurance.  I take Xanax for anxiety but it is not for everyone.  Better if you can relax without drugs!

ElaineNY

Good for you!  I know it took me a LONG time before I used the enemas - they were in the closet - don't do much good there.  Good luck!  AND - hurray for your husband helping - mine hides LOL!  I have to do mine in the bathroom over the toilet because I can't reach any other way.

ElaineNY

Hi Mercury28,

Your colitis doesn't sound so bad, considering that you have been able to ignore it for all these years. Perhaps a food diary, probiotics, meditation, breathing exercises, and change in diet will help.

Yah, I understand your concern about taking medicine. The colitis maintenance medicines aren't good for the kidneys. For those of us who aren't going to die from heart disease, diabetes, long cancer..., it is a concern. A relative of mine, who is 96 and was in perfect health, is now in the hospital due to a kidney issue. He'll be okay though. However, the issue with the colitis medicines hurting the kidneys is for those who are taking the medicines long term. Taking the medicines once in awhile shouldn't cause any major problems.

I too prefer sigmoidoscopies to colonoscopies. There is no reason to get a colonoscopy if only a sigmoidoscopy is necessary. However, a colonoscopy might be worth the peace of mind, considering that you haven't had one in all these years and are worried about getting cancer. The risks of getting a colonoscopy are extremely low. I haven't read of anyone on this forum saying their colon got damage from having one. The worst I heard is that it caused a flare. As for increasing the cost of medical care, preventive procedures are worth it.

Zippy123 said...

Mercury28 said...
Can someone just clarify something for me, because i feel a little anxious about this. I have used my Asacol foam enema for the 2nd time about an hour ago, i put it in and can hold it in no problems, the thing is when i felt like i needed to go to the toilet, NO enema actually came back out and i only passed a little mucus. Is this normal to have no enema come out?

My husband seems to think that it has just absorbed in to my bowel and not to worry, but it's in my nature unfortunately to worry about everything!

I'm no expert, but I would say your husband is right, it most likely absorbed into your bowel. Keep an eye on how you respond the Asacol, the enema's tend to give less side effects than pills, for me Asacol worked good for about 2 months then stopped working and gave me side effects like I became intolerant.

At least with a Sigmoidscopy you might be able to put your mind to rest about cancer. Worse part with me was giving myself the preparation enema's, painful for me, yet doctor said I had only a little spot of inflammation at the time.

Hi Zippy123 what kind of side effects did the enemas give you after 2 months of using them?

I am not really feeling like they are giving me side effects, my muscles are aching abit but thats it. I was more concerned that i didn't pass it back out again!!

You need to accept that there are some things you can't control, like disease and medication side effects, and there are many things you can control, like your attitude and whether you take the medications as you should.
I find your anxiety about an enema and a colonoscopy (and imaginary cancer) a little baffling. I think continuing to participate in this forum may put some of your anxiety in perspective. Most of us are scoped and enema'ed quite regularly and do not have serious side effects or cancer.

I guess a lot of us have a different viewpoint than you do. A lot of us can't have no life without the meds...I felt as if I couldn't go anywhere because the threat of pooping my pants was so great. I was also so tired and weak that I wasn't able to care for my son like I wanted to. My husband always had to take him if he got fussy of an evening, because the only thing that calmed him was walking around the house with him, and I didn't have the strength to do that. To me, it sounds like you've been able to live a pretty normal life without meds. However, now it seems that you need to take some to get over this flare. For most of us on here, meds are a necessity, and we'd much rather risk the side effects than to get so sick we have no life and risk being hospitalized. The risk of serious side effects from mesalamine drugs are very, very low, especially for the enemas.

My point is that you need to find a way to deal with the anxiety so it doesn't dominate your life. I take meds to keep my UC from dominating my life. That's why I suggested some cognitive behavorial therapy (coupled with you saying that you worry a lot in general). You don't want ANY disease to control your life, and your worries about cancer and such seem be dominating your life.

Mercury...Take your meds with knowledge of what they can do for you. The incidence of chronic inflammation and cancer is higher...but of course, that doesn't mean it will happen to you.

It seems that your reasoning may have you tolerating a lot more than you need to...something that would lead me to question why you choose to suffer to the extent you do.

You have some options....one could be to have your colon removed if you don't want to use meds....

Please make sure, at least, you have colonoscopies around every 3 years.


All the best to you....you're going to need it. One cannot exist with chronic disease on a wing and a prayer.

I second the therapy suggestion..not only CBT, but that as a part of it.

There is really no dignity in suffering....but it's not an all or nothing proposition regarding dealing with UC. Many choose meds, many choose alternative remedies...all have medicinal values and varied successes.

Please do lots of education on why meds are prescribed. Work with your doctor on treatment dosages and taper to maintenance of all the options available to you. Personally, if the 5-ASA meds work for you (wish we had the Asacol foam)..that's super awesome.

quincy

I truly believe that as long as what you do to your body does not seriously affect others - it is your business.  Here on the forum we get support for all we do - even when others don't agree.  Also, the "medications" and treatments are what has worked for others and may or may not work for each of us.  I feel very fortunate not to have a more serious case of UC - never been anemic or hospitalized.  That could make a lot of difference in the way I treat myself and my condition.  Many here have great results from mesalamines and I wish I could tolerate them as I think they seem to be the safest/best if possible.  Right now on last day of prednisone - 2.5 mg.  I will take it again if necessary but wish I did not have to.  I learned a lot about my body in 69 years and living with IBS for about 35!

ElaineNY