Might now be out if denial...

I have been really, really, really hoping that I could find a way to manage UC without meds, but I think I am finally realizing tonight that I can't. After picking up my 2 girls (1 1/2 & 4) from their daycare, I got them home and while uploading them from the car, I had that urge. I got the little one inside and left the older one to get from the garage to inside herself, but I was too late. While they are young and don't quite understand what is going on, how do you explain why a grown person is having accidents? It isn't my first one, but the first one in a while. I just broke down in tears. Again, trying to explain that one....

I decided last week that I was going to try gluten-free. Been doing this for 5 days now and no change. I did read that it can take 6 weeks for a change to be seen. I can't wait 6 weeks. I just want my life back. I want to be able to do things without having to worry so I am finally realizing that I really do need meds.

I wonder of I can try the rowasa even if I am allergic to Asacol. I wonder if I should go on imuran or 6mp. I have heard pluses and minuses to both. The whole thing is just so confusing! UC sucks!!!!!!

Just needed to vent as there are so few people I am willing to talk about accidents with :/

Oh boy do I know the accident scene all too well. So sorry you are going thru this. At my worst, I wasnt even able to drive 5 minutes up the road to pick my kids up from school without having an accident in the car. That messes with your mind after a while. I went thru all the meds and diets but nothing worked. I had j pouch surgery which has been a life saver and a blessing. Have you talked with your dr. as to what you could try next?

Gottago
You don't say what you are currently taking, if anything.
Are you using natural supplements? Probiotics? There is a lot of info on cureforulcerativecolitis.com about natural alternatives as well as food combining.

I've been doing my best to go gluten-free for a couple of weeks and today I realized that I might be reducing inflammation but, because I'm eating so many vegetables, I'm going more. When I was eating bread and pasta, they did not pass thru as quickly.

Don't be discouraged. If I were in your place and decided to try meds, I would go with the one(s) with the least side effects. Most people with UC seem to start with an oral med and a mesalamine enema. I've been on Colazal and its generic (balsalazide) for 10 years with no side effects. Have also used mesalamine and corticosteroid enemas in the past.
Maybe you can ask your doctor about taking them for awhile to get things under control and perhaps look at natural supplements to soothe your gut.
Best of luck to you........

Guess my signature didn't show up with my post. I was first diagnosed with proctitis and was put on hydrocortisone suppositories. Those seemed to help, but after 6 months, the symptoms turned. We tried canasa suppositories and those didn't do anything. We also tried pronto foam and that did't do anything either. After having a colonoscopy, I was diagnosed with UC. The dr. Put me on Asacol and I ended up in the ER with pancreatitis, thus the concern over rowasa. he also had me take budesonide (sp?), which did nothing. I ended up on a prednisone taper before thanksgiving and just finished up. Symptoms returned around 7.5 mg. the GI dr wanted me to start imuran. In the meantime, I had been seeing a homeopathic dr who felt she could keep me in remission. I have been on glutamine, fish oil, and slippery elm tea since thanksgiving. I started VSL#3 about 3 weeks ago and just increased to 2 packets last week. I thought I was seeing/ feeling a difference, but the past couple of days have been horrible. Nothing I did was different.

I am scheduled to meet with a specialist at Dartmouth in March. Don't know if they will say anything different as there does seem to be the same general protocols for UC. I am planning on calling my GI dr here tomorrow to figure something out. While I loved being symptom free on prednisone, I most certainly don't want to have to be on it and I don't want the UC to go any further from me being so stubborn.

@kazbern good to know about the gluten and 2 weeks. I will keep plugging along at it.

@byebyeuc. Glad things are going well for you and the surgery was successful! Hoping to get my life back...

Thanks for listening. Unless you are go ping through it, it is hard to understand.

Those episodes can be humiliating. And explaining all the time might be annoying.
I would try to sort out the med support you can have and what can work for you. Then the accidents should go down.

For talking to your girls well I had this idea with my husband to simplifie it.
For example if I really really need to go and dont have time to talk i would say red light red light bye bye and would run! If i have cramps and i feel something is coming but still have time to manage a bit it can be a yellow light! In that case a green light should be I feel fine.

And sorry, Welcome to the forum! :)

I would say the enemas are very risky if you're allergic to asacol. I'm not sure how you'd react to sulfasalazine as they're similar, but not identical. It's worth talking to your doctor about. If not I suggest you try imuran or 6mp.

If you're still looking for alt treatments, fecal transplant or helminths might be worth a shot, but they're not guaranteed to work and it's hard to find a practitioner who will use these treatments.

Andrina said...

Gottago! said...
While they are young and don't quite understand what is going on, how do you explain why a grown person is having accidents?

Yes you are grown but no, you are not healthy. It's hard but you need to accept that. Sure, I don't like accidents neither, but I know it's my illness. And not because I'm not old enough to hold it. See the difference?

Did you ever talk to your girls about it?

Thanks for reminding me that is it the illness. I have talked to them about it; mostly that I am sick and that makes me have to go to the bathroom a lot. Neither are phased too much at this point. I guess right now it is more my issue; Trying to come to grips with all this :/

Madpotter said...
I have twin five year old boys that go to Pre-k two days a week. Our mornings start very slowly with Mommy on the toilet the first couple hours. I feel like I cannot make breakfast properly for them. Every morning I start making their breakfast which is interrupted by several dashes to the bathroom. They don't really understand why I spend so much time in the bathroom. I don't really want to tell them I am sick because we just lost my Mom to colon cancer. I don't want them to think they will lose me. It's tough and it sucks. It's also difficult trying to feed a family when you do not know what to eat yourself and have so many food restrictions. I hope my lack of enthusiasm for food doesn't damage my children's eating habits.

The other day I was driving them to preschool and they were singing a silly song about poop in the car. Instead of reprimanding them I chimed in and made up some variations of their poop song! It was liberating! I thought preschoolers potty talk seems strangely appropriate for my UC. :)

So sorry to hear about your mom. Glad you were able to find some fun around the UC!

Gottago:
Aloe very juice is sold in some regular grocery stores in the "healthfood aisle", other wise a local Whole Foods or
neighborhood Co-Op will either carry it or order it for you.

allswell, I am not considering surgery yet.... My Mom had a colostomy bag and I am very familiar with how they work as I was her caregiver. Which type of surgery are you having? Jpouch? I would like to try to control my UC with meds and diet (although diet doesn't seem to make a difference for me) and monitor for cancer. Hopefully, colon cancer would be caught earlier given I get colonoscopies a lot more frequently than the average person...