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At the end of my rope!

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Ulcerative Colitis
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Posted 2/13/2014 11:46 PM (GMT 0)
For the past two years, I have been getting sicker and I am so frustrated with my treatment options! Just looking for some support.

To make a long and frustrating story short, I was diagnosed with IBD, but it is not clear the cause. My two worst symptoms are nausea and bleeding. Genetic testing ruled out UC and Chrohn's, but inflammation was found so its being treated with Lialda and canasa for the past year. I am on a low residue diet with no dairy, sugar. So there is little I can eat.

Yesterday I had my fourth colonoscopy this year and my doctor wants me to begin steroidal enemas and I just can't bear it.

The thought of having an enema every day fills me with dread. Complete and total dread. I am so upset about it.

Also when I been on any steroidal drug even those that promise no side effects I have gained weight, got acne and fell into a deep depression.

I want to throw in the towel. This disease is humiliating and painful. I'm pretty low.

Any advice? Are the enemas as bad as I feel they are going to be? Do you stay on them indefinitely?
Posted 2/14/2014 12:12 AM (GMT 0)
The enemas are no where near as bad as the pain of passing a bm through an inflamed rectum! However, saying that, I cringe at the thought of them even though I have been using enemas on and off for 9 years so there is definitely a psychological rather physical discomfort to them. I find it best to just do it, and not think to much about the whole process. They are definitely no worse than the canasa you have already used.

I do not think you would be expected to stay on a steroidal enema indefinitely. Many people, like myself, do use mesalamine enemas as needed for many years, but one does become less uneasy with them over time.

Sorry you are feeling so low. This disease is difficult to deal with on many levels. I would say this is pretty good place to let it all out and know others can relate and let you know that there will be "up" days to help counteract the down ones.
Posted 2/14/2014 1:56 AM (GMT 0)
I was dreading the enemas too. I had a vision of some horror contraption from mid evil times filling me so full of fluid I would blow up or something! They are not bad at all!
Slidaway, I am curious, how old are you, if you don't mind sharing? When my son was diagnosed with Crohn's, he was very devastated. It's a tough disease.
Posted 2/14/2014 2:06 AM (GMT 0)
I'm on the enemas and they really aren't that bad:)
Posted 2/14/2014 2:35 AM (GMT 0)
This disease is rough! Ive been under treated for so long... in so much pain... im over the pride thing... ill shove whatever up my butt that will help!

A lot of people here on the boards use enemas a few times a week (maintenance dose is not every day once the flare gets under control.)

Stay positive, try to find some supportive friends to try to distract you from your disease. And in the end... I think most of us on this board have talked with a counselor too! :)
Posted 2/14/2014 4:06 AM (GMT 0)
Thank you all. I am not sure why this part is so hard for me. I had a lot health problems throughout my life and especially as a child... and I pride myself on being tough, but I am struggling. Maybe I am making too much of it. Or maybe I am just feeling overwhelmed because it has been so chronic.

All your advice is helpful. Thanks. I feel less alone.

Oh and I am 40.
Posted 2/14/2014 4:14 AM (GMT 0)
ya, I'm with Katie - I'd shove a cactus covered in cow snot up my butt if I thought it would help -

besides, why should the docs have all the fun :-)

" And in the end "

LOL

Post Edited (soystud) : 2/13/2014 9:17:39 PM (GMT-7)

Posted 2/14/2014 8:32 AM (GMT 0)
Enemas are definitely not as bad as they sound like. I have been doing enemas about two years ago with probiotics (VSL#3 + Mutaflor) and even though it sound very nasty, it is definitely doable. Now I do not need to do any thing as I have been completely off medicines for about two years.

As a suggestion: Two things helped my problems very much, to leave out dairy (which you did alread) and using the "food combining" rules. "Food combining" will allow you to eat most ingredients, but the only thing mattering is how they are combined with other ingredients. You get better digestion and less problem from bad digestion. Nothing had as big impact on me as food combining. SCD did not help me anything, from what I noticed at least.
Posted 2/14/2014 12:24 PM (GMT 0)
I would rather use enemas, localizing the medication, than take the medication orally. I've never done steroid enemas (maybe they are somehow worse or more difficult than mesalamine enemas?), but will probably have to before long.

Perhaps I had a similar emotional reaction to the first time I used an enema 15 years ago, I don't really remember. However, it's so well worth the benefit.

I do remember the first time I filled a suppository prescription, and the pharmacist had to counsel me. He gently and uncomfortably told me how to get in the correct position for insertion, at which point I asked "And it goes in the ear, right?" That was a tension breaker. :-)
Posted 2/14/2014 5:22 PM (GMT 0)
I have done steroid enemas and oral prednisone and the enemas are much better; do not have the systemic side effects (mostly- I swear still gave me some insomnia) as the oral. I am doing mesalamine enemas nightly now....not so bad but I am tired of just...doing them. I think it is better to treat the area directly if you can...so this sounds like a reasonable approach to me. Hopefully you wont be on them forever. Hang in there!
Posted 2/15/2014 12:02 AM (GMT 0)
For me salofalk enemas are just life saving, i wouldn't be able to exist without them so i don't understand your fears completely. I don't understand either why you haven't started with mesalazine enemas, but straight with steroid ones
Posted 2/15/2014 1:24 AM (GMT 0)
hi slidaway

I completely understand being bummed about enemas. I used to feel the same way (was embarrassed to use them, buy them, etc) and avoided them. But when I discovered that they really worked (and they did) things got better, bleeding stopped the day after using them. I used mesalamine enemas, not steroid.

Steroid enemas should not cause weight gain because they are "topical" and very little enters your bloodstream.

However enemas did not get me to remission and oral meds have never given me any positive benefits. My remission (and I haven't used enemas in a loooong time) is due to diet modification.
I won't go into my diet but I know what a limited diet is like such as your low residue. Takes a will of iron to stick to it but if symptoms get better then it's worth it.

If you don't see improvement with using enemas and diet in 2-3 weeks please consider additional diet changes or some of the other choices people have had success with (triple antibiotic therapy, resistant starch, antibacterial supplements).

Sucks that you don't have an exact diagnosis but you are one of us anyway.
I've never heard of genetic tests for IBD just biopsy. If you didn't have bleeding it would probably be DX'd as IBS.
Posted 2/15/2014 2:58 AM (GMT 0)
I used steroid enemas for 5 months and they definitely helped a lot. I did struggle with sleep issues, night sweats and hair loss from them after about 3 months but I am off of them now and all those issues have resolved themselves. I know they are what made the difference for me, although I would rather have used rowasa but I am allergic to sulfites and my insurance didn't cover the sulfite free version until I was nearly done using enemas.
I also cut gluten and reduced sugars for several months and that also helped a lot.
Posted 2/15/2014 6:53 PM (GMT 0)
My concern would be....your doctor put you through 4 colonoscopies in one year????????????

Do you have the copies of ALL your testing results including blood, etc, biopsies?


q
Posted 2/16/2014 12:39 AM (GMT 0)
Slidaway!

I'm so sorry that you are struggling in this way, but let me tell you!! It's not as bad as you think! I literally did my first Rowasa enema last night and it was a piece of cake. I am supposed to be doing them every night for now and I don't know how long this will go on for. I was definitely nervous beforehand, don't get me wrong, but it wasn't bad. I took a Bentyl and some tylenol PM about an hour before I did the enema and I just passed right out afterwards.

I understand your frustration. I haven't been sick for as long as you have, in fact, I was just diagnosed in the beginning of January but it's like my entire life has changed now. A few months ago, I never would have thought that I would be giving myself a nightly enema, but ya know, what can you do. I want to be well and I am willing to do what it takes. I know how degrading and embarrassing it seems but it's not our fault. It's the nature of the disease and we have to just go with the flow.

I have remarkably learned quickly to not be ashamed of this cruel disease and the treatments/diagnostics that come along with it. If friends ask, I tell them. Even when it comes to the enemas!! I tell my family about it all too. It helps, it really does. And if all else fails, you have the online community to support you!

Hang in there!!!!
Posted 2/16/2014 5:27 PM (GMT 0)
I feel your pain slidaway, trust me though, if you need the enemas you need to do them, it's gross and uncomfortable yes, but the relief you'll likely end up getting is so worth it, just be patient...the worse the severity is, the longer it can take for them to kick in. Best of luck, and don't worry, you can do it!!
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