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Ulcerative Colitis
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Posted 7/15/2015 9:41 PM (GMT 0)
Hey all -
I'm brand new here, so I'll start off with a little story

I'm 20, junior in college, accounting major. When I went off to college, I weighed in at about 250 lbs. 2.5 years later, I'm down to 135.
The first few years, I tried to bring up my concerns to my parents, which were just met with "school is just stressing you out, plus all the walking around and Lord knows what you're putting into your body!"
I kept telling them and telling them about my symptoms - that I was hurting, didn't hardly ever feel like eating, diarrhea constantly, everything.

Finally, I decided to take things into my own hands and just go to my general prac. (It was a hard decision because I don't really have a job because of school) but I was going to make sure they knew I had something really wrong with me.
My GP wasn't able to do much except refer me to a GI, but I'm thankful she did.

After my first appointment with my GI, he immediately scheduled a colonoscopy after hearing about all of my symptoms. Thank goodness this finally got my parents attention, and they got on board with everything.

After the scopes, I hear from my doctor and well.. Yep. I'm diagnosed with UC. I just got put on Lialda to see if it works.

Yesterday was the worst day I've ever had with it - I was in tons of pain, and I finally broke down and accepted that this is going to be with me for forever. I felt so exhausted and fatigued... I couldn't even get out of bed at all. It's just so rough on me. I had the thoughts like "why me?; is it my meds, or just my disease?; why can't I even get out of bed?"

I'm just very scared about the future, especially at this time in my life (school, interning, relationships) everything. I know I will have times where I feel better, and times where I feel bad, but I just don't know how to deal with it currently.

I've read around and read some advice on this forum - and I'm still looking around but I just wanted to thank you all in advance and I wish you all the best.

-John
Posted 7/15/2015 9:58 PM (GMT 0)
Welcome to the site, first of all, don't ever be hesitant about asking questions, no matter how detailed they are. We all post about our bathroom habits, no matter how detailed. We all are going through the same, you have a place here to vent and gain information. This disease is a roller coaster, it will test your limits physically and mentally. It will fatigue you badly at times, other times, it can disappear into remission. My longest remission was 3 years. You will have the "why me" days, we've all pretty much had those one way or another. Some meds you may be put on are terrible, beware of Prednisone. It's strong and effective but has horrible side effects. If it ever gets bad enough, there are ways to rid your body of the disease. I have no meds left that work for me, I'm facing surgery to remove my colon and get a J-Pouch. No colon = no UC. Some have great success with it, others have trouble but it is a way out to gain your life back if things get bad. Take things one step at a time, finding a good GI is very important, they will be your best friend.
Posted 7/15/2015 9:59 PM (GMT 0)
John, Lialda works well for about 45% of people, and works somewhat for lots more. Then there are other meds that work for some of the ones Lialda misses.

There are also often changes to diet that can help symptoms (but likely not underlying disease in many cases). For example low residue/fiber until D subsides. Also you may have temporary sensitivities to gluten or dairy because your "helping" gut microbes are all in disarray right now. So try eliminating some foods.

As for fatigue, some is just the weight of diagnosis settling on you. Some may be dehydration. If you have been bleeding, there could also be anemia. DO not take oral iron, ask for infusion if needed.

There are some cases that go downhill rapidly or do not respond to treatment, but do not assume that is you.

Things are hopefully not as dark as you fear.

Hang on.
Posted 7/15/2015 10:04 PM (GMT 0)
Welcome to the forum and sorry to hear about your diagnosis. There are a lot of people on here and around the world going through EXACTLY what you are right now (some even much worse), so you are not alone. Truth is, no one knows how to deal with this disease at first. You just have to stay headstrong and eventually you start to figure it out yourself. What meds work, what alternatives work, what food helps/hurts, how to get from point A to point B, etc. Its not easy, but its something we all have to deal with.

Everyones disease path is different. Some people get into long term remissions with just the mesalamine drugs, then there are people at the other end of the spectrum (like myself) who have burned through all the meds with no relief. Fortunately for you, the statistics are heavily favoured on the earlier end of the spectrum. Its very important to keep in mind that the stories you hear here and online are heavily biased in favour of the later group however, so try not to get discouraged from that.

Its very very important to educate yourself, take your meds, and stay on top of your meds, no matter how you feel. There are so so many resources online (including this forum) to get support and information, so make sure you do your due diligence. There are many people who are more than willing to help and answer your every question. Best of luck and I hope you stick around the forum!
Posted 7/15/2015 10:11 PM (GMT 0)
Getting UC at a young age is tough because you are in the middle of creating your future career. I hope your parents learned their lesson and start taking what you tell them more seriously than they did but bravo to you for getting a c-scope and taking charge of your health. My God losing almost half your body weight?

The first thing I thought was "Good thing you are in Accounting" because you'll be in offices with bathrooms nearby not a more difficult career to manage your UC.

UC is not the end of your world at all. You will have a great life, this is just a factor to manage.

Because you had a very bad day you should call your GI and ask for pain meds that can help you cope with the pain. Perhaps you should be on a steroid while the Lialda takes time to take hold. There is no need to suffer during this period. I highly suggest getting a mesalamine enema and suppositories to use. They take some getting used to but nothing I ever used worked better than the enemas.

You are probably in the worst time right now so don't think it will be this way the rest of your life. It will get better. Truly. When you can't get out of bed accept that and rest. Call your doctor and get some more RX meds.
Posted 7/15/2015 10:16 PM (GMT 0)
UC will probably be with you forever, on and off. But, that doesn't mean that when it is on you will be feeling like you do now. Most everyone finds a way to control it to manage their symptoms or even put it into complete remission. Unfortunately, it might take you a while to get there. Sorry you had to join us.
Posted 7/15/2015 10:32 PM (GMT 0)
Hi John, welcome to our little group. Sorry that you had to join us.

I've had very good success with Lialda. How long ago was your scope? Where is your inflammation located? I would also ask for some rectal meds.

Have you also had blood work done? Many of us with UC have low vitamin D and have to supplement. Being deficient can make you very tired. But then again a flare will exhaust you too.
Posted 7/15/2015 10:59 PM (GMT 0)
Hey guys - thank you for all the answers and so quick!

I know it's a tough battle and most likely a longtime battle and I know I have a lot of resources with support, like all of you guys, and my boyfriend so we'll see how it goes! You guys already made me feel a little better about everything! :)

I'll talk to my GI about the pain tomorrow and see what he says -
As for the scopes and blood work,
My scopes were about a month ago and I actually just had blood work done on Monday - I'm going to pick up the results tomorrow and see what they say (along with a urine test, I'm not exactly sure why that was ordered)

Also, I forgot to mention, my GI suggested I get on some type of protein (like whey powder, or ensure) because I need to counteract the weight loss (which I'm still having)
Do you guys have any advice about that?

ALSO EDIT: my inflammation is mostly in my rectum, proctitis I believe, but he said there's a little within my colon as well

Thanks again guys! I can't even begin to express how glad I am to be here already

Post Edited (JohnPD) : 7/15/2015 5:05:39 PM (GMT-6)

Posted 7/15/2015 11:15 PM (GMT 0)
If your inflammation is in the rectum, definitely get rectal medication. Enemas or suppositories can help with that, often more than oral meds. Really enemas would probably help most but you may have great results with Lialda so keep your chin up. Please don't feel defeated this early on. there are a lot of options for you and you will find something that works for you. It could get you into a very long remission. We have members who used to post who found something that works for them and I haven't seen them since. In years and years. I am always exhausted too so I understand that and I think it's aside effect of having active inflammation. You're just starting meds, you will get the inflammation controlled and you will get som energy. You're young, you have your whole life ahead. Try not to stress about this, focus on getting better. I am so happy your parents have come around and that they are willing to accept you have something more than stress and poor eating habits. In my case, neither of those things have shown to have any impact on my UC. Some people have luck treating with diet but I think the majority do not (from what i've seen here).
Posted 7/15/2015 11:50 PM (GMT 0)
my GI always has me drink Ensure when I'm hospitalized, usually 3 a day. They aren't bad at all
Posted 7/15/2015 11:58 PM (GMT 0)
Hey I'm sorry your going thru this
I too was diagnosed recently and my mom kind of made me feel like a hypochondriac so I thought nothing was really wrong until boom 15+ bloody Dieahrea a day I knew I was sick and than I got help but it was already advanced and it made it that much harder to treat
I'm glad you were proactive
about the protein - I would not recommend taking ensure because it has carrageenan in it and many UCers notice an increase in blood when they consume products containing it
There is credible scientific backing that carageenans can exacerbate The symptoms of UC
If you need protein I find that salmon is much easier for me to handle than chicken and meat I'm not exactly sure why
Make sure you get enough b vitamins especially 12 and folic acid and vitamin d
If you take steroids take calcium
Good luck in college and feel better
Posted 7/16/2015 1:56 AM (GMT 0)
Sorry to say hi here.. Good that you found this forum in the initial stage itself.
Do everything possible along with medication so that the proctitis won't spread- If needed make diet changes and lifestyle changes. I know it's tough being in college to balance everything. But always put health first.

Inform your college disability office about your medical condition . You have to give a recommendation letter from your GI about your condition and needs.By doing this you will get the leverage from all your professors in submitting assignments,taking tests,using restroom and for no show to class. This disability protection is a huge stress reducer.

Try your best to eat healthy with less sugar , addictives and packaged foods. If you can cook your own foods with fresh ingredients it will help to get healthy faster.As Dikid said - salmon is a very good source of protien and it's easy to bake or grill. Organic chicken broth has lots of healing benefits.

Also check into resistant starch benefits for proctitis as it helps many.
Posted 7/16/2015 2:39 AM (GMT 0)
Hi John, I'm sorry you're here especially at your age and being in college. I echo previous suggestions for rectal meds. I've had some nasty proctitis in the past and rowasa enemas really helped me. My first GI doc aka Dr. Moron, never mentioned rectal meds so I was clueless. I'm taking canasa now because my doc thinks I have some inflammation in the rectal cuff. Others can speak to steroid enemas...I've never used them. Hang in there and hopefully you get some relief soon. Definitely ask for pain meds. You've already been an excellent advocate for yourself; keep in mind there will be times that you disagree with your management and it will be necessary to speak up. It's great that your bf is supportive because this can be a lonely disease when others don't understand or say things that highlight their ignorance of the disease.
Posted 7/16/2015 4:57 AM (GMT 0)
Sorry you're here but don't despair. Many with UC manage their daily lives just fine once they figure out what meds (and sometimes diet or supplements) for work for them.

Rectal meds are imperative. You should ask your doctor for hydrocortisone enemas and mesalamine suppositories and do the first at night and the second every morning. Rectal meds have worked miracles for some, including myself.

Once you get this flare under control and figure out what treatment you need to stay healthy, your life will go back to close to normal. My remissions tend to last two years during which I eat anything, have once bowel movement a day, no urgency, gain back all the weight, etc. You'll get there.
Posted 7/16/2015 12:52 PM (GMT 0)
Welcome to the club, John.
Please ask your GI about rectal meds, they seem scary and embarrassing, but they WORK! If you just have proctitis, you can likely use suppositories to help calm inflammation.

As far as protein powders/shakes go, try and find something without a lot of "junk" in it. The fewer and more pronounceable the ingredients, the better. If you are fine with dairy, Tera's Whey powder is good. Add an avocado to a smoothie, too, it helps with good fats and calories.

You haven't mentioned this yet, but please let your school know about your illness. I am a professor and it is easier to know in advance that we have a student with medical needs than to find out mid-semester when the student has been out for a while. It can be a difficult subject to talk to your professors about, but you can keep it simple and say something like "I have a medical condition that may require me to make frequent trips to the bathroom" or something along those lines. I have had a student use that statement with me, and the college also gives me a notice with a similar statement. If you find you have a better time of day, try to schedule as many of your classes then. I have stopped teaching 8 am classes because mornings are hard when flaring. Once things are in control, you will feel "normal" again, even if it is a new normal. Hang in there!
Posted 7/16/2015 5:33 PM (GMT 0)
Many of us live normal or mostly normal lives with uc. I'm sure your relieved to finally get a diagnosis, regarding the symptoms you've been experiencing for a while. Now all you want is relief. Uc goes through periods of flares (when uc symptoms are full-force) which you are experiencing now, and remission (an absence of symptoms from uc. Right now, you need to give your medications time to heal you, and keep in touch with your gastroenterologist about your progress or lack-there-of. You might get lucky, and have your first treatment plan work. But for many of us, treatment of uc is a trial-and-error process, taking time, and trial of a number of medications and dosages to put our uc into remission.

A few tips

  • Get a heat pad, and place it on your abdomen. It'll quickly become you're best friend as it helps sooth the aches from your intestine.
  • Eat more frequent, smaller meals consisting of bland foods until you feel better. Also avoid caffeine, alcohol, spicey foods, and a high fiber diet.
  • Educate yourself about uc, it's chronic and lifelong, so you need to become a sponge and absorb everything you can.
  • As you found out, not everyone (relatives, and sometimes doctors) all understand how the uc symptoms impact your quality of life. If you're not feeling great, and your quality of life is suffering then you must be your own best advocate for what you need to be well. Ask about changing medications, trying new things, etc.
  • Have a gastroenterologist who you trust and you can work with you well, as your doctor is best a teammate, you can count on; not a dictator who gives your concerns no notice/consideration.
  • Ask us questions about anything, we get it here, and all experience the same things. And feel free to vent, cuz we all do when we're frustrated and nothings working!
  • And good luck, we're sorry you have uc, but are glad to help.
Posted 7/16/2015 6:16 PM (GMT 0)
as many will tell you, listen to your body. Regardless of how big or small a symptom is, always pay attention to what your body is telling you. A minor symptom may turn into a big one, don't ignore the little things. I've definitely learned over the years when my body starts to get dehydrated, and those little dehydration symptoms start to show, I know to start attacking the issue before it gets worse. Sometimes that means taking myself to the ER for fluids. I've been severely dehydrated and hospitalized for a few days because of it, now I know if the slightest symptoms show I need to handle it asap.
Posted 7/16/2015 6:56 PM (GMT 0)
I've listened to everyone on here and I'm so blessed! Thank you all - I'll call my school up ASAP and make the accommodations

-- I just ran to the hospital to pick up my labs and (keep in mind I don't know much about this so i'm just going to type it out)

In my comprehensive metabolic panel, my ALT was low - at 13 (average range is 20-72)
My magnesium was high at 2.5 (1.6-2.3)
My urinalysis test showed U URO 1.0 (0.0 - 1.0)
I'm talking to my doctor on monday about the labs - I just thought I would shoot them out here for more knowledge. Thank you all!
Posted 7/16/2015 9:52 PM (GMT 0)
I agree with the advice to tell your school.

I use different ways of explaining my illness on a "need to know" basis. I might say I have a hidden disability (if challenged when using a disabled toilet), or an auto-immune disease, or an inflammatory bowel disease, depending on the situation.

I think it helps sometimes to say "I have an auto-immune disease that affects the bowel, which means......" otherwise people can tend to misunderstand that you have irritable bowel syndrome (IBS is unpleasant, and I sympathise, but it's not the same as having an IBD!)
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