new diagnosis, nervous about meds

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still_living
New Member


Date Joined Jan 2017
Total Posts : 12
   Posted 1/11/2017 12:27 PM (GMT -7)   
So.. part of this is going to be me venting my little story. I've read and a lot of posts on this site, and written a few. At the time my doc suspected UC per colonoscopy, but now it's official. I feel like there is no one in my life that takes me seriously at this point, and the ones that do just keep trying to fix me and, dangit its not that easy.

***From the top (this could get long, please dont hesitate to scroll past my asterisks where I will ask for some advice/reassurance/etc): I started smoking marijuana at age 15 or 16, I was a HEAVY pot smoker for 11-12 years...like morning noon night, unreasonable amounts. Literally never went a day without unless I was out of the country. Yeah, I know. You can judge, I kinda judge myself for it too. That said I was astonishingly functional, I have a doctorate degree, blah blah blah. Also, by bowels were super functional. I pood every single day, first thing in the morning like clockwork, never more never less, always well formed and awesome.

***In May of 2015 I started cutting back, by July I was down to 1-3 times per week. In early September 2015 I had a bout of constipation that lasted about 5 days. After that things were a little less regular, but no UC symptoms. November 2015 I stopped smoking altogether. Let me note that I was in the last stretch of my doctoral program, definitely stressed, and coping differently than I had ever know before (sans mj) Nothing I couldn't handle though.

***I graduated Dec 2015, and a week later I got SUPER ill. Liquid diarrhea for 7 days, debilitating nausea for 15. Nothing has ever been the same. I cant say I have had a normal well formed stool since. My late January 2016 I had a lot of mucus, almost constant diarrhea and a unusual amount of gas. By Feb 2016 I noticed the first blood. None of those symptoms have gone away. By August 2016 I was getting more urgency.Overall my symptoms are mild-ish Frequency (usually 0-3bm/day, still sometimes constipated), nocturnal BMs sometimes, but more often I'm up at night to just try to pass gas, mucus and blood (with urge enough to wake me up). Oh, and tenesmus at times enough to make me feel like I'm going to faint. Ugh

***And I sadly let all of this go without seeing the doctor for a year. I went through a couple doctors who were the absolute worse. Literally fighting with me, downplaying my symptoms, prescribing medications as diagnostic measures etc. Finally I found one who listened. She immediately sent me for a scope which revealed inflammation up to the splenic flexure. I knew it. I didnt want to. I didnt want to confront it. Its still hard, especially with a background in holistic medicine, a generally very health diet...how could I? And how could I suffer through this for a year without going to the doctor. Grr.

Interestingly, since the scope I feel like my symptoms are a tad better. Just a tad. I have taken turmeric (which is a staple in my diet anyway), boswellia, probiotics, fish oils, multivitamins...nothing particularly helpful. I have tried smoking mj again in the last month, which definitely seems to help, but I hate the feeling now. And having been a smoker for so long, and done every freakin variety, strain, CBD formulation out there, trust me they all get you high. Yes even the CBD. Maybe its a different high, but still high. At least for me. Just not enjoyable. And I hate eating it mostly because of the taste. So I would like to avoid that route if possible...but will go there if nothing else works. Essentially nothing I have tried has been consistent enough to know for sure if it's helped. I also have not been regulating my diet much.

My main concern is going on medication. I was prescribed Lialda on monday and haven't started taking it yet. I fear the side effects. I fear not responding. I fear adverse reactions. I fear that if I start it I will never get off it, and if i try I will have worse symptoms than ever before. At least that seems to be the trend. Is there any hope for me considering I technically have mild symptoms? (don't get me wrong, I have pood in the woods, I have pood in my pants, i have anemia due to blood loss, but I'm mild compared to many)

Also, will I ever have a normal poo again? Its been so long, and they used to be so good.

Have there even been any cases that unmemdicated people have reduced inflammation enough to have a clean scope?

OH! I could probably ask my doctor this next time I see her but I figure y'all could help me with this one too:

When doc asks "how many BMs do you have per day?" I have no idea how to answer.

How many times to I actually pass stool?
How many times to I have urge enough to make me go sit down regardless of what comes out?
How many times to I get ANYthing out per day?

They are all so different, but they are all so relevant/significant with regard to symptoms...

Any feedback is so appreciated. Sorry about the long post. It is so meaningful that this forum is even available. Everyone that posts is so kind and considerate. Whether or not you can follow my kooky rant-post or not. Thanks for being here y'all

Michelejc
Forum Moderator


Date Joined Jan 2011
Total Posts : 1680
   Posted 1/11/2017 12:46 PM (GMT -7)   
You need to start taking the medications your doctor has given you. Is Lialda the only medication your doctor gave to you?
MODERATOR-UC FORUM
58, female - diagnosed with moderately severe proctitis/mild diverticulosis
Lialda - one a day
6mp - 50 miligrams
VSL#3 DS - 1 pack a day or as needed
Zocor - 40 mg
Calcium with Vitamin D
Glucosamine
Magnesium
B-Complex

"Fly under the radar" - Dad -

still_living
New Member


Date Joined Jan 2017
Total Posts : 12
   Posted 1/11/2017 12:47 PM (GMT -7)   
Yes that's the only one.

I guess I also forgot to mention I do not have any pain. I have had several significant joint flare ups.
July 2016 left thumb metacarpophalangeal joint, then left hip joint
September 2016 right elbow, then right acromioclavicular joint
December 2016 left hip again, then right wrist, then left wrist

Post Edited (still_living) : 1/11/2017 12:50:14 PM (GMT-7)


imagardener2
Veteran Member


Date Joined Jan 2010
Total Posts : 5344
   Posted 1/11/2017 12:55 PM (GMT -7)   
You said:
My main concern is going on medication. I was prescribed Lialda on monday and haven't started taking it yet. I fear the side effects. I fear not responding. I fear adverse reactions. I fear that if I start it I will never get off it, and if i try I will have worse symptoms than ever before.

If you can't get over this mental block then please consider getting counseling as this is holding you back from healing. You have to take the first step and see if conventional RX can help you. No one will force you to continue taking them so don't fear adverse reactions, you can stop taking the meds if that happens. I did it and later told my GI and she didn't even blink let alone frown, just moved on to what next to try.

Since you have read a bit on this forum you know what advice comes next--get an RX for mesalamine enemas and use them nightly. I am someone that oral RX did not help much (I still take them daily) but enemas helped me greatly. UC starts in the rectum and pills rarely reach that far, topical enemas sooth and reduce inflammation there and you need to try them. Learning curve to using them but well worth it.

How many BM's a day? I would count it 2 ways: how many times you use the toilet and how many times #2 appears. Sometimes nothing happens (that is a false alarm called tenesmus). GI's just want to know where to put you in severity, over 10/day is severe I think.

Stop beating yourself up about pot use. Some people who quit cig. smoking also develop UC, there is some protective effect of smoking and some never get the benefit again if they restart smoking which you don't want to do anyway.

Baby steps, one day at a time with RX meds. Unless you are the luckiest person you will not find the miracle RX right away, process of trying and seeing what happens. Diet modification got me to remission + RX + some supplements. I kept trying. Others have different paths to success.

Good luck. Get started, either with therapy to lower your fear of meds or just start knowing they will not hurt you and you are in control.

still_living
New Member


Date Joined Jan 2017
Total Posts : 12
   Posted 1/11/2017 1:06 PM (GMT -7)   
Thanks imagardener2. Very helpful advice. I appreciate it. I just went to pick up prescription and found out that the meds haven't been auth by insurance yet and would cost $340 oop, so I have to wait anyway. This is hard. Trying to be strong.

Michelejc
Forum Moderator


Date Joined Jan 2011
Total Posts : 1680
   Posted 1/11/2017 1:24 PM (GMT -7)   
I've been taking Lialda for 9 years now. No side effects.

You are going to have to find the right cocktail of medications that will work for you. It will take some time.
MODERATOR-UC FORUM
58, female - diagnosed with moderately severe proctitis/mild diverticulosis
Lialda - one a day
6mp - 50 miligrams
VSL#3 DS - 1 pack a day or as needed
Zocor - 40 mg
Calcium with Vitamin D
Glucosamine
Magnesium
B-Complex

"Fly under the radar" - Dad -

PamSmith
Regular Member


Date Joined May 2010
Total Posts : 179
   Posted 1/11/2017 1:25 PM (GMT -7)   
It is very hard on everyone when we get chronic disease diagnosis and specifically if it is mild, hard to accept that. Most painful part is accepting that we will have to take some kind of medication for life and side effects from those medicine. Very few people can manage with only diet and can have normal life.

So if you have UC then you will have to give try to medication. Lialda is first line of medicine. It has the least side effects and very safe as it works topically in your colon. I would say if Lialda works for you and brings you in remission, keep taking them because once it fails next line of medications are immunomodulator and/or prednisone.

Wish you loong remission.
Current medication: Uceris 9mg 1/day, 6mp 75mg/day, Delzicol 400mg 3x3
Current supplements: multivitamin, VSL #3,Citracal, Vitamin D,Biotin
Diagnosed :crohn's colitis 2010 now changed diagnosis to indetermined colitis(prometheus serology sgi test)

Mrs. Brady
Regular Member


Date Joined Feb 2015
Total Posts : 123
   Posted 1/11/2017 2:27 PM (GMT -7)   
As someone who didn't want to take medication either I urge you to take them. The severity can increase with untreated UC and it can spread further throughout the colon. I am currently taking a biologic, with no side effects and praying it works. Even with insurance Lialda is costly, make sure you check into the savings discount card. Best of luck to you and hope you find long lasting remission.
Hoshimoto's Hypothyroidism DX Oct 1997
Pancolitis DX Feb, 2016
GERD DX Nov 2013
Lupus, DX Sept 2015
Medications - Synthroid; Hydrocort Enemas (as needed); Prilosec; Iron; Plaquenil; Vit D. Humira
Past Meds: Lialda and Imuran - adverse reactions to both, discontinued

DBwithUC
Veteran Member


Date Joined Feb 2011
Total Posts : 3342
   Posted 1/11/2017 3:36 PM (GMT -7)   
get the Lialda co-pay card to pay some of what you ins does not.
11/08: ischemic colitis and scope perf colon. 12cm colon/ileocecal resected. IV antib:sepsis.
01/10: Dx: Mod. UC pancolitis. Rx: Lialda 3x.
02/11: Major flare w/antib:sinus. Rx: 40mg Pred taper. 6mp.
07/11: Histol remiss rt/trans; worse sigmoid. Rx: Rowasa & hydrocort
---
Curr: 1-2 soft-formed stool, no urgency: Lialda 2x, NO PRED, probiotics, Vit-D/C

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 8124
   Posted 1/11/2017 6:32 PM (GMT -7)   
A new diagnosis is a lot to wrap your head around. A lot to learn and accept. It sounds like you're still in the first stage, denial. Many of us were very healthy in diet and life yet contracted ulcerative colitis anyways. Nobody knows the reason or the cure. Yes, take your lialda whether you're feeling bad or good, it's a 90 percent topical medication that few experience side effects from. I'd also ask for a rowasa enema, treat from both ends is best.
Moderator Ulcerative Colitis
John
, 38, in a minor flare, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 50mgs 6MP, 4.8g Mesalamine DR, 5mgs pred (tapering)

Tips for surviving UC: learn to laugh as it helps, get a good pair of running shoes for bathroom runs, and appreciate the small things.

momto2boys
Veteran Member


Date Joined Jun 2013
Total Posts : 1632
   Posted 1/11/2017 8:32 PM (GMT -7)   
It is scary when we are first diagnosed, but take the lialda. I would also ask for rowasa or steroid enemas. Feel free to ask anything here, nothing phases us!
41 yrs old diagnosed with proctosigmoiditis 6/13/13
meds- 2 Lialda + sfRowasa nightly - supplements: probiotics (1 VSL3 cap, 1 culturelle and 1 reuteri) 1 gram krill Oil, 2 TBSP p. seed powder, 2 g curcumin. Allegra for seasonal allergies as needed. Allergic to sulfites. Currently gluten/dairy free (except yogurt) and eating lots of RS.

PamSmith
Regular Member


Date Joined May 2010
Total Posts : 179
   Posted 1/12/2017 7:37 AM (GMT -7)   
Also if Lialda is too expensive for you, ask your doctor for "Mesalamine DR 800mg". Its generic drug similar to Lialda and Asacol HD. But Please give it a try. Definitely you can do diet change and add supplements but this is safest drug from all IBD drugs.
Current medication: Uceris 9mg 1/day, 6mp 75mg/day, Delzicol 400mg 3x3
Current supplements: multivitamin, VSL #3,Citracal, Vitamin D,Biotin
Diagnosed :crohn's colitis 2010 now changed diagnosis to indetermined colitis(prometheus serology sgi test)

tiredofallthispoop
New Member


Date Joined Jan 2017
Total Posts : 4
   Posted 1/12/2017 3:26 PM (GMT -7)   
My dr prescribed Lialda but it was very expensive. I got him to change it to Balsalazide. Basically the same drug, just have to take a lot more pills, and it costs $125 vs $860 or something like that....

Jocelyn
New Member


Date Joined Jan 2017
Total Posts : 3
   Posted 1/17/2017 11:45 PM (GMT -7)   
When I first got diagnosis with UC about two years ago I did not think twice about not taking the medication. At the time my GI prescribed me Apriso( 4 capsules a day). I was in so much pain I just wanted it to stop. After taking the first dosage, I woke up the next morning and guess what I passed a normal bowel movement with no blood. I was in complete shock because previously I was experiencing almost 15 bloody bowel movements a day. Even my own GI was surprised that I responded so quickly to the medication. Apriso helped me stay in remission for about a year until I flared up. Within the two years I have been diagnosed with UC I have flared up three times. These three times have been right after taking antibiotics. My doctors are pretty convinced that my colon has a weird reaction to antibiotics and that the antibiotics just throw me completely off my path of remission. Point blank is you should try the medication. I had no side effects, and hey you might even be as lucky as me and see results right away. Sadly, I'am currently flaring up after taking antibiotics. My doctor put me on Pred, which I was terrified to take because of all the crazy side effects. It's been almost a week and still no horrible side effects just pretty bad insomnia but thats about it. I hope you feel better soon. If you feel really uncomfortable taking your medications have a deep convo with your doctor. That's what helped me when I was scared to take Pred.
-J
20 Years Old
Ulcerative Pancolitis
Currently experiencing a flare since early Dec
Medication: Pred. 40mg a day + Apriso 8 capsules a day (0.375grams each)

still_living
New Member


Date Joined Jan 2017
Total Posts : 12
   Posted 1/17/2017 11:53 PM (GMT -7)   
Thank you all so much for the feedback, unfortunately there have been some serious malfunctions between my doc, my insurance company, and the pharmacy. Should have meds sometime next week. Will be taking them.
29 yo f
heavy stoner for 12yr, quit smoking Sept '15, then sx started (2016 was the WORST, un-dx for a year)
Dx Jan '17, left side UC, mild-mod
Meds: none yet
Supp: fish oils, vit D, multi-vit, turmeric/curcumin, boswellia, probiotic, triphala, 1 hit mj every other night
Diet: not too restricted, generally diet is low on dairy and wheat,
currently 1-2 bm per day, mild-mod urgency, w/ blood, mucus
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