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Posted 9/30/2010 9:02 PM (GMT 0)
Notsosickly:
Is your condition not severe that surgery would be a viable option for you?
Posted 9/30/2010 9:04 PM (GMT 0)

FutureMD said...
I didn't get his thoughts on the antibiotics. Acne can be a very serious condition in itself, but I have to put things into perspective at this point. Doctors are sometimes reluctant to say too much because there is so much liability in misdiagnosis. I don't blame them one bit! Where can I buy probotics, what kind and how much do I take daily? Also, how much do they cost?

That totally makes sense about the rectum being the hardest area to reach! Lucky me :(
I'm seriously contemplating having the surgery! I am going to the doctor on Monday (my first time since the diagnosis). I'm going to ask him a plethora of questions and mention surgery and get his opinion on it.
If I can rid myself of this nasty disease and go on to live a long productive life, then I would be a fool not to. Taking all these different medications in the future carries a lot of risks as well.
I heard that j pouch surgeries have been performed for the last 20 years! I only live about 4 hours from the Cleveland Clinic, and I hear they have top notch doctors. Most posts that I have read are from people that use the surgery as the last resort, and WISH THEY HAD DONE SO YEARS EARLIER! I'm 26 and hoping that I would recover quickly.
I am down about 12-13 lbs in about 10 days....so I'm going to step up my eating, even if it causes me pain because I don't want to be anymore malnourished. I'm very lean right now.

I have to let you know that before I was diagnosed I weighed 130 lbs. During my first extreme flare I dropped down to 97 lbs. I was also hospitalized for almost a month. Once you find the right medication for you most likely will snap out of this frustrating time. When I found the right medication my body got back to normal real fast, my body felt way more normal than it had ever been in my entire life. In a way I'm thankful that my UC came out when it did. Before it surfaced I never felt 100%. I now feel like a functional person, with the exception of my minor yearly flares.
Posted 9/30/2010 9:08 PM (GMT 0)
Sweetie:
Yeah, I hope you are right. I just am in college and have a long way to go before I have financial stability. I can't let myself be sidelined for years with a disease or have it pop up and throw me out of college again. I am in the process of medically withdrawaling from this semester. Surgery seems to be the outcome for most UC sufferers at some point, and I'm thinking why wait a long time to start living life again? But then again, like you said, maybe it will get better and rarely rear its ugly head. I'll have to just see what the doctor recommends based on my specific circumstances, but I'm really hopeful because of your experiences with UC.
Posted 9/30/2010 9:10 PM (GMT 0)

thatfield said...
I noticed you state that you switched from Enemas to Canasa. I too prefer Canasa as far as the ease of using them but my doctor told me that the medication in Canasa on reaches a few inches of your rectum so since your UC affects 8 inches the Canasa is likely not reaching the entire area.

Yes. My GI also said that Canasa doesn't reach that far up and if need be I could try Canasa using an enema approach. To tell the truth, I'm not sure how this would work. So far Canasa has been working great for me. I use it whenever I feel like I might be going into a flare; so I haven't pursued the enema-Canasa option. But it is something to think about for those who are flaring a little farther up.
Posted 9/30/2010 9:20 PM (GMT 0)

FutureMD said...
I didn't get his thoughts on the antibiotics. Acne can be a very serious condition in itself, but I have to put things into perspective at this point. Doctors are sometimes reluctant to say too much because there is so much liability in misdiagnosis. I don't blame them one bit! Where can I buy probotics, what kind and how much do I take daily? Also, how much do they cost?

Yes. Dermatologists are always pushing antibiotics even now that my acne isn't nearly as bad as when I was younger and that I make sure to tell them I have UC and antibiotics will trigger a flare.

Yes. Acne can be a very serious condition in itself. However, please note that you might be making a choice between your skin and your colon. Plus, the more antibiotics you take, the more prone you may become to infections in general. I know. It's happened to me. I do have to say that if I probably had to do it all over again, I would have probably took the antibiotics. However, today there is much more information. In the end, I eliminated cheese and bread from my diet and those horrible skin inflammations that I had, that antibiotics could not kill, went away on their own. If I had only known about alternative treatments when i was younger. Perhaps, I would not have IBD.

Please note: wash all items of clothing, pillow cases, and towels that come in contact with your acne every day. Wash them in the washing machine in very hot water, or better yet, boil them. The bacteria goes onto cloth and then back onto your skin. Also keep your skin dry and cool. Bacteria love hot moist areas.
Posted 9/30/2010 9:52 PM (GMT 0)
I've been acne free for 5 years. I look like a neutrogena model (minus the fact that I'm a guy, and not a model):) I'm just taking the acne meds because It seemed to makes sense since they worked. I haven't troublesome acne in 5 years. I am definitely open to the idea of not taking antibiotics anymore! I wonder if it is still okay to use RETIN-A cream??
Posted 9/30/2010 10:36 PM (GMT 0)
I would probably stop taking the doxy antibiotic. I thought it was for severe acne and if you have been acne free for 5 years then why take it??
It seems like you are worrying so much and I feel so bad. When I was first diagnosed I was so worried too. I ate a lot of rice and yams and Mrs. Grass soup. As I started feeling better I ate more and more.
I also drink Boost and don't have a problem with it. Everyone is different.
Try and stop worrying - i think you will feel a lot better and heal faster
Posted 9/30/2010 10:48 PM (GMT 0)
If you have been on long term antibiotics and have got past needing them – stop taking them!
Surgery is a major step and I totally accept that it could be better than taking on all the hard-core drugs that are used for UC but it also brings risks that need to be carefully considered. Lots of people have suggested low carb/fat/sugar foods and probiotics. If you are eating normally and it is rushing through you - the bacteria in your colon get sugars/nutrients they are not designed to receive. This changes the bacterial population and can further promote inflammation, wind and speed. By stopping the antibiotic and taking STRONG probiotics such as VSL3 and Mutaflor you might push your gut flora back into balance. It is difficult to predict because we all have our own genetic baggage as to what we can tolerate, but by slowing down transit time by eating ‘less rich’ foods that minimise wind, and then gradually introducing soluble fibre foods, it can turn a flare around. Uncertainty can be hard to deal with but by jumping straight to surgery unless to deal with life threatening complications - it can leave regrets.
Sue
Posted 9/30/2010 11:04 PM (GMT 0)

FutureMD said...
If I can rid myself of this nasty disease and go on to live a long productive life, then I would be a fool not to. Taking all these different medications in the future carries a lot of risks as well. Most posts that I have read are from people that use the surgery as the last resort, and WISH THEY HAD DONE SO YEARS EARLIER! I'm 26 and hoping that I would recover quickly.

I hear you. If you are allergic to 5-ASA then that could explain your excruciating symptoms and why you are going backwards. Mesalamines carry their own risks but if you must take stronger corticosteroids and immunosuppressants then the toxic side effects are worse. I sympathize that you are so young and don’t want to endure the side effects of meds for years before finally finding out in the end that you have to go through surgery anyway. I normally do not mention this out loud because I don’t want to discourage those here who are on meds.

But surgery has its own risks. There is someone here who endured surgery and later found out she did not have ulcerative colitis but Crohn’s so surgery was not a cure. But all things considered if I were in your place I would also seriously consider surgery.

Another less probable but viable alternative might be seeing if your UC can be controlled thru diet. It doesn’t work for everyone but it does work for some and the worst case side effect is that you will be eating healthier. My cholesterol and BP have dropped, my HDL has increased and it is no longer a hassle of keep my weight in control. The problem with diet and natural supplements is that they work much better for maintaining remission rather than ending a flare that is in progress. But once your flare has ended perhaps you can try diet. The surgery alternative will always be there.
Posted 9/30/2010 11:39 PM (GMT 0)
I appreciate the advice. I'm going to try the meds first. I'm 5'9, 153lbs. and currently eat pretty healthy and used to workout 5 days a week. Then, I was anywhere from 170-185 around 12% bodyfat. Other than a year of fast food, health has always been a staple in my life.
Posted 10/1/2010 12:01 AM (GMT 0)
FutureMD:

Thank your for including your signature.  Second, I think you have gotten some great advice here.  I would definitely recommend you get on some probiotics and get off the doxycyline.  Again of course check with your doctor but that's my personal opinion.  Second I would give everything a chance, it's been only a short time on the Asacol.  I believe  the Asacol worked for me in the beginning but it stopped helping my UC a long time ago, hence the Imuran.  I only high agree that cortifoam or some form of rectal medication is also a good idea.  Diet has never really effected my colitis at all.  Good luck with this.  Keep posting.

MyUC

Posted 10/1/2010 12:30 AM (GMT 0)
I think my condition could warrant surgery but I am pretty stable right now and I'd prefer not to have surgery if I can avoid it (I scar badly and painkillers make me sick). I am not feeling that healthy and I don't think I would be able to recover from the surgery as quickly as someone else might be able to. I am also not 100% sure I have UC and not Chrons. I will have to have an Endoscopy before I consider surgery. It is definitely something I would consider but I haven't tried all of the medical options available. I am going to try to give this some time to pass and hope I can get into a long remission. If I find that I can't get out of this flare up without prednisone or that I am flaring regularly even while on medicine, I don't think Ill have much choice, Ill have to have surgery. I have looked around at j-pouch.org and I've read blogs written by people with ostomies and pouches and I feel like I am pretty informed. I live in a major city, I saw some surgeons listed on j-pouch that are local. There could definitely be some huge +s to having surgery.
Posted 10/1/2010 1:33 AM (GMT 0)

FutureMD said...
I've been acne free for 5 years. I look like a neutrogena model (minus the fact that I'm a guy, and not a model):) I'm just taking the acne meds because It seemed to makes sense since they worked. I haven't troublesome acne in 5 years. I am definitely open to the idea of not taking antibiotics anymore! I wonder if it is still okay to use RETIN-A cream??

Acne is a condition that generally gets better with age. There is no reason to use antiobiotics, Retin-A, or any kind of acne medication if you don't have acne. I can understand using Retin-A if you have acne scars. But if you don't, then why would you be using it? I'm 48, and I still have acne and acne scars. Some of my acne is very old. It's been there for decades. I use Retin-A mostly to help get the old stuff out and help reduce scarring. My skin would be clearer if I used antibiotics, but it's not worth losing my colon over. Like I said, I probably have IBD due to antibiotic misuse.
Posted 10/1/2010 12:19 PM (GMT 0)
Well, I want to keep my face free of clogged pores. I get a lot of whiteheads, etc. I don't think that there is any research that advocates negative effects of putting topical retin-a on your face to keep your pores from clogging, however, I agree with you about the antibiotics. Retin-a, being that is is a vitamin A derivative I believe, is said to be the only wrinkle reducing medicine. This may not matter to you, but being attractive has many benefits in life. It sounds shallow and it is sad to say, but people like interacting with attractive people. Of course it is all subjective to a point. Anyways, I definitely am going to seek other avenues instead of antibiotics.

Secondly, as of right now...I only have inflammation of the rectum! I don't have any colon inflammation which is why I can't understand why I'm in pain. You would think that someone that has it in the colon would be more affected by a bowel disease than someone who only has it in the rectum?
Posted 10/1/2010 12:50 PM (GMT 0)
Oh don't under estimate the rectum! :) I only have inflammation about 8 inches too but this flare has been absolutely horrible! I would actually prefer to have my whole left side involved then just the rectal sigmoid area because then it doesn't hurt as much.

And it's not shallow to care about the way you look. Everyone wants to look their best. I'm not a vain person, never have been, but I like to look good. I wear make up mainly because if I don't I look SICK, and I hate people giving me pity looks. I don't have acne but I do get other skin conditions due to Uc such as rashes, cysts and random boils. So when these things act up, I hate to go out because I feel unattractive. I've used Retin-A in the past to help bring a cyst out and it didn't have any affect on my Uc.
Posted 10/1/2010 12:53 PM (GMT 0)
The best I can understand the pain thing is that there is some referred pain sometimes - where we feel it is not necessarily always exactly where the inflammation is. There are folks here with ulcerative proctitis who have had more severe pain than I have had with pancolitis for 19 years.
In fact, I never had that pervasive pain (other than preceding/during a bowel movement when flaring) until about 2 years ago - and then I hurt all across the transverse colon. I thought I'd experienced everything there was to experience, so I was shocked!
If the Asacol does not do anything for you... what gets me out of flares is Cortenemas. I hate to "plug" steroids in any form, but.... they get me out of flares, and so far, quickly. As you taper off the pred, you might ask about the steroid enemas - significantly less systemic than pred.
I was almost exactly your age when I was diagnosed with u. proctitis. I believe this disease tends to hit people in their 20s more than any other age group!
Posted 10/1/2010 12:58 PM (GMT 0)

FutureMD said...
I've been acne free for 5 years. I look like a neutrogena model (minus the fact that I'm a guy, and not a model):)

FutureMD said...
Well, I want to keep my face free of clogged pores. I get a lot of whiteheads, etc.

?? White heads are a form of acne. First you say that you've been acne free for 5 years and look like a Neutrogena model. Then you say that you say you still get a lot of whiteheads. Whiteheads are acne.

My previous advice was for someone who has been acne free for five years, not for someone who is still getting white heads.

Post Edited (subdued) : 10/1/2010 7:10:01 AM (GMT-6)

Posted 10/1/2010 3:36 PM (GMT 0)
I have considered myself "acne-free" for 5 years because I have been taking my medication everyday, however, if I stop taking the retin-a(which I have only done a few times)...then I get whiteheads, hence, why I did not stop.

The "neutrogena model" comment was a humorous way of saying that I have a clear face (with acne meds).

RED:
I definitely won't ever underestimate the rectum again! Ha. Today, I actually feel a little better which is a relief.

Songlady:
Is there a big difference between UC in the rectum and ulcerative proctitis? It sucks getting a disease at any age, but I never imagined being 26. None of my friends have anything like this, and most drink often and eat badly.

There should be a UC dating forum where people share their experiences dating while having UC. Seems like most everyone on here met their spouse before they were diagnosed.
Posted 10/1/2010 4:36 PM (GMT 0)
I believe UC of the rectum and ulc. proctitis are exactly the same thing. When mine was first diagnosed, the ulcerated spot was so small my GP went right past it, doing a sig., without seeing it! lol The GI found it, though.

I wonder if there might be a dating forum or at least young person's area somewhere... I know ccfa has a place for teens. Yes, many of us here are old fogeys (or my son would say - no offense to anyone!) but the majority of UCers are diagnosed young.
We actually do have a number of college and grad students on here.
I'm helping my 17 year old look into colleges, and I do worry about what it will be like, everything from social life to not feeling well and classes.
Posted 10/1/2010 4:37 PM (GMT 0)
Uc in the rectum is classified as Ulcerative Proctitis....it's the same thing.
Posted 10/1/2010 4:42 PM (GMT 0)
Definitely don't underestimate the rectum!!! I had UC limited to my rectum and a spot the size of a quarter took two years off my life. Ultimately I had surgery as no amount of enemas, suppositories, and pills (22+ per day) would put me in remission. It can be a stubborn area to treat.

sue
Posted 10/1/2010 4:42 PM (GMT 0)
Here's an article about acne meds and IBD.
http://www.ccfa.org/reuters/acnetreatments
Posted 10/1/2010 6:51 PM (GMT 0)
FutureMD...Oh yeah, the butt rules!!! and is the signaller of the colon and sometimes the entire digestive tract depending on what's going on down there...

REgarding acne treatments, you can consider Differin topical treatment. Do the research on it...it's a synthetic vitamin A treatment.

I would strongly suggest you try to retain the enemas by white-knuckling it through the wanting to eliminate phase...it passes after about a minute. If you can get through that...retention will get easier.

As well, consider dicyclomine about an hour before using them..

Yes, the rectum can be the most difficult area to treat...remember that's where UC flares start and end.

q



q
Posted 10/1/2010 8:07 PM (GMT 0)

FutureMD said...
I have considered myself "acne-free" for 5 years because I have been taking my medication everyday, however, if I stop taking the retin-a(which I have only done a few times)...then I get whiteheads, hence, why I did not stop.

The "neutrogena model" comment was a humorous way of saying that I have a clear face (with acne meds).

I misunderstood. For me, Retin-A makes my skin redder; so it's not possible to have a Neutrogena face and be using it.

In regards to acne and scarring, for me, Retin-A helps to get some of the gunk out. It also helps greatly with reducing scars.

Post Edited (subdued) : 10/1/2010 2:14:48 PM (GMT-6)

Posted 10/1/2010 8:11 PM (GMT 0)

songlady said...
Here's an article about acne meds and IBD.
http://www.ccfa.org/reuters/acnetreatments

Thanks for the link, Song Lady. It's nice to read someone from the medical community admit that bowel disorders are linked to acne medications, albeit rare. Yep. I have probably taken all of those antibiotics on and off for decades, mostly on too.

One thing though, they say that it is possible, that the risk of IBD is related to the biology of severe acne itself and not to the treatments. Yes. That could be true. However, it certainly doesn't help to be taking medications that destroy good gut bacteria. And then in regards to my own experience, my acne is inherited. Unlike my mom and sister, I used antibiotics instead of hormones, and I'm the only one who has IBD.

Post Edited (subdued) : 10/1/2010 2:19:17 PM (GMT-6)

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