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UC HELP - ANY TIPS ARE WELCOME PLEASE
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littlestlmomma posted:
Hello, I have been reading some of the discussions here off and on. I am 24 years old, a mother of two little ones, work part-time and have had UC for 2-3 years now. I was not sure how bad it would be when I was first diagnosed years ago, but I was put on Lialda for my first flare and a few weeks later I was clear and my UC went into remission until just this past winter. I have been on a horrible flare-up since November, have been hospitalized twice (though could have gone in even more), and am currently following a low-fiber no-milk diet (pretty much no veggies absolutly no fruit), still taking lialda, am on and off steroids (oral and enema), and am also on Remicade (8 + weeks). Nothing seems to help and I was just hospitalized this past weekend and had a few really good days after all those meds, but today I am feeling the pain creep up again and feel like I am at the END of my rope. I am looking at many books and diets to follow, but do not want to buy into a scam or take something that hasn't been reviewed. Please all you UC ppeople, what do you do when you are at the end of your rope, and what helps? Aside from the physical this is really starting to take an emotional tole on me - feeling like all my meds are a financial burden and that I can not be there for my kids like I want to be. PLEASE REPLY, ANY TIPS OR DIET ADVICE IS MORE THAN WELCOME.
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mindyj1971 responded:
I'm so sorry that you are having such a rough time right now:( I was diagnosed with Crohn's Disease in Sept 2008. Since that time I have had 5 surgeries and multiple hospitalizations. I had to quit my job as a Medical Assistant and go on disability. My kids were only 7 and 5 when I was diagnosed. I have missed out on soooo much! I finally received the wonderful news that I am in remission, but it took having my colon and rectum removed to get me there. I now have a permanent ileostomy; but I have my life back. I just started back to work this week. Only working about 15 hours to start out....I'm so afraid to trust my body after all that I have been through! I wish I had some wonderful advice or some concrete answers for you. Hopefully, you have some family and friends near you for support....to help with the kids and run errands for you. My family was wonderful with that kind of thing. I basically spent the last 2 1/2 years in bed or on the couch. I know how helpless you feel and I understand the guilt you are feeling about not being able to be the parent that you want to be right now. You must give yourself a break....get the rest when you need...don't be afraid to ask for help. Push fluids all the time so that you do not get dehydrated. I can't tell you how many times I ended up in the ER for that problem! It just sucks the life out of you:(

Have you talked with your dr about taking an anti-depressant? If not, you should....it really does make a difference. These diseases are too hard on us physically and emotionally....and being on and off the steroids can wreak havoc on us...I have been on prednisone for 14 months straight and some days I think I might lose my mind!

Please keep coming here to vent! Hopefully, some of the other will be along shortly with some advice for you. I just wanted you to know that you are not alone...I have been where you are at and I know how isolating it can be.

Hugs to you....hang in there and get lots of rest!
Mindy
 
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arbob5 responded:
I was dx with UC in 2008. I had good weeks and bad weeks, trying to get the right combo of meds, and finally, FINALLY, about a year ago, I found probiotics. I started out with Align and got very little help, then someone here recommended Dr. Swanson's Ultimate Formula Probiotics, I ordered them, and it has made all the difference in the world for me. Within a short time, about 4-5 days, I could tell the difference. I'm also on low dose prednisone, Lialda and Lomotil. This combo has put me in remission. I know that this could change at any time, but for the time being, I am quite comfortable.

The probiotics can be ordered on line at Swansonsvitamins.com. They are normally $14.99 for a month's supply, $4.99 for shipping, no matter how many bottles you buy, but good news from another probiotic fan here on this site....they are on sale for $8.99 a bottle now. Last night I ordered 3 bottles. It's a good deal at that price, believe me. Some of the other probiotics you can buy at Wal Mart or K Mart are quite expensive.

I suggest you try them. This could be the answer for you. But just remember that what helps some people doesn't help everyone. But for the most part, these probiotics are very successful for many, many people.

And Mindy's advice is good also, We all go through depression, trying to cope with these diseases, and we need all the help we can get. Talk to your doctor about that.

Keep us posted on your progress. We are interested and are always here for you.
 
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miserable_sob replied to mindyj1971's response:
I'd keep away from anti depressants. This is a depressing experience but just think about all the side effects anti depressants carry too. Getting rid of depression here could just make things worse.

Have you tried any natural stuff such as Metamucil? It's just a bandage but I have noticed a difference when I use enough of it. Although I am post UC now and living with a J Pouch. But that still leads to diarrhea everyday, minus the blood from my UC days.

Your experience doesn't sound much different than mine. At least you're able to find alternatives now on the internet for your UC. When I had it the internet didn't exist.
 
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hannahleigh89 responded:
I would definitely talk to you doctor about anti-depressants. I started mine shortly after my diagnosis of Crohn's (to try to help control some of the bowel spasms, not for depression at all), and now that so much more has gone on, they keep me pretty stable. On the days when I forget to take them, I feel noticeably more hopeless. Or I used to, I haven't forgotten them in a long time because it makes for a miserable day.

I'm not really sure what other advice to offer you. I was really sick for about 7 years. My diagnosis jumped from GERD to UC to Crohn's back to UC and then finally Crohn's Colitis. I was sick for a long time because we would either treat one disease or the other, and never both. I didn't get an affirmative diagnosis until after my colon and rectum were removed through a series of surgeries over the last year or so. I never really found anything that worked super well for treating the UC, but my Crohn's seems to be managed fairly well right now with Humira and Methotrexate.

Maybe you should talk to your doctor about upping the dosage of your Remicade (I was on the maximum dose for years and it still made little difference) or increasing the intervals that you receive it to every 6 weeks from 8. If that doesn't seem to work, there are other medications like Remicade that may work better. Like I said, Remicade didn't seem to help me a whole lot for the nearly 4 years I was on it. I hurt slightly more before an infusion than I did afterward, but I was still in a lot of pain. The Humira/Methotrexate combo seems to be working wonders, but I'm also fresh out of surgery. It may just have not had time to come back yet.
 
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ACD2525 responded:
Apologies for the dissertation, but I want to weigh in on this discussion of antidepressants for digestive disorders.

In my years of dealing with my disease (Crohn's), I have, time and time again, stumbled upon convincing articles that link the digestive environment with the neurological environment. As crazy as it sounds, there is scientific and anecdotal evidence of connection between the brain and the gut.

Think about it: You eat, your mood improves and you become energized. You don't eat, you get depressed and weak. Why? Apparently, the same neurotransmitters that are present in the brain are also present in the intestines.


Crazy, right? Maybe not. Think about the X-ray images you've seen of your bowels. The fine fingerlike highlights in the periphery look exactly the same as the tiny branches of the neural & limbic systems. These structures exist to transport the same chemicals in both places. For this reason, many GI professionals describe the gut as "the second brain".

Isn't it interesting, that all narcotics and antidepressants and anti-inflammatories, carry "possible side-effects" of constipation & diarrhea; Irregularity in general.......

I suspect this is why so many Gastro docs are now prescribing antidepressants for digestive disorders. It may be justified on paper as a treatment for incidental emotional symptoms that we inevitably experience, but it also might be a quiet attempt to treat the actual disease by means that are not directly sanctioned by the FDA or the AMA.

Hope this helps everyone here. But, take this for what it is, just one affected person's conspiracy theory....
 
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rayeshope responded:
I was recently diagnosed with UC in January. I definitely understand your emotional struggles. I am dealing with them too. I was considering trying an anti-depressant as well. There are days that the future looks hopeless. I always blame it on the prednisone which I have been on and off since January. For me, the prednsione works, when I titrate off of it my symtoms return. My Dr has me titrating very slow this time. I also take balsalazide and mesalmine enemas at night. I want to mention that I when I became very sick in April, I switched to a different doctor. The doctor that I have now had a different method to deal with UC and so far it is working for me. You should be able to talk to your Dr about everything and if you continue to struggle with flares, find someone else. If there is a medication that worked for you in the hospital to ease your symptoms then there is hope to get your symptoms under control at home. One thing that has really helped me is knowing as much as possible about treatments (current and future). You are doing the right thing reaching out to others here. It has helped me too. Especially, knowing others are winning the battle.
 
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larsstarscanary responded:
Hi, littlestlmomma .


Anti-depressants aren't for everyone, but they work for me--I wish I had had some to get me through my formative years.


One of my former gastroenterologists said I was born with the ulcerative colitis that was misdiagnosed when I was 15, and properly diagnosed when I was 19-years-old-and-half-dead from the (mis-)treatment prescribed.


I suffered with the ulcerative colitis continuously from infancy, both physically and mentally, until I graduated from college, then on and off again throughout the decades. I was given antidepressants well into adulthood. I've never been given painkillers.


I take Apriso now for the ulcerative colitis, but what helps me the most is the Lee Swanson Signature Line Ultimate Probiotic Formula that www.swansonvitamins.com sells. I had had diarrhea for 2006, 2007, 2008, and all of 2009 until the Monday before Thanksgiving of 2009 when I started taking the LSSLUPF. I've been in remission since Thanksgiving 2009.


I heard about probiotics from a www.ccfa.org seminar, and from WebMD.


VSL#3 was the first one I heard about from someone on the Internet, but it was way out of my tight budget. My gastroenterologist suggested AlignGI, but it did nothing for me but drain my pockets.


Yesterday evening, a cook said his food wasn't spicy, so I ate some of it--It was spicy, and I ran to the bathroom a couple of times. But, last night I took the ordinary amount of the LSSLUPF, and the next morning I was well again.


I love Lee Swanson, though I've never met him, and never will, but I will take the LSSLUPF forever.



 
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arbob5 replied to larsstarscanary's response:
I totally agree with everything said about Dr. Swanson's probiotics. Great, great, great!!!!!
 
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darkntall replied to larsstarscanary's response:
yeah the Swansons Ultimate Probiotics have REALLY helped me out with my Pentasa too!...WILL NOT DO WITHOUT IT!


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All I have now are body aches. Colonoscopy found pan UC 11/2008. I had reoccurring iritis before starting Apriso.

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