diagnosed today - 2000MG/day Sulfasalazine appropriate or excessive???

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KaseyF
Regular Member


Date Joined May 2008
Total Posts : 65
   Posted 5/13/2008 7:15 PM (GMT -6)   
Hi everyone. I was diagnosed with severe UC this morning after an oh-so-fun colonoscopy. I've never been dependent on medication, so I'm really depressed at my prescription. Taking a 500MG tablet of Sulfasalazine FOUR times a day.

Four!!!

That seems so much. Going from zero pills, (well, some iron) to four a day. I want to cry. And the number 2000MG scares me.

What I want to know is, is this normal? It seems so excessive to me, like it can't possibly be good for me. I'm 27 years old, 5'0" and 115 pounds.

Let me explain a bit further. I'm also anemic (now discovered to be related to the UC, didn't know that until today.) I was once misdiagnosed, told to take 3 OTC iron supplements per day. I researched and decided to try out once a day, and this was the right decision. Eventually, my iron levels returned to normal. (Now they are back to low, but whatever.) So understandly, I'm worried I've got a similar situation here and I'd really rather not overdose on this new drug.

So I'm curious what you all think. Also, I've been reading that iron supplements might interact negatively with the Sulfasalazine. Will this be a problem?

tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 5/13/2008 7:41 PM (GMT -6)   
Welcome to the forum! 4 pills?! I take 16 a day! Nine of which are Colazal (similar to sulfa as it is a maintainence med). I know it is scary though thinking about taking all those meds. By the way I'm small too (5'4, 110) and can handle them all!

I'm not sure about the iron and sulfasalazine. Hopefully someone can chime in w/ more info on that. You can always ask your pharmacist. They are a great resource when it comes to questions like that. Or call your GI's nurse. She/he should be able to help you.

You hang in there! Keep us posted on how you are feeling.
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 5/13/2008 8:03 PM (GMT -6)   
Hi Kasey. I take 6 Sulfasalazine a day. 2 tabs 3x a day. So, what you are taking is not excessive. I've even taken as many as 8 a day, as others have. Your Doc will probably lower the amount once you get into remission. I am in remission right now but don't want to change my dosage just yet. If I stay in remission, I will probably drop down to 4 a day, but I will probably wait a few more months just to be safe. Are you also taking folic acid? This is usually prescribed along with the Sulfasalazine. Sulfasalazine slows the absorption of folic acid, hence the need for folic acid. Don't be too alarmed about the 4 a day. I was diagnosed at the age of 21. I've had UC for 27 years now. Good Luck............


*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema 2 x a week. Omega 3, Probiotics, multi vitamin, cacium supplement, Biotin....
 

Post Edited (munchkindd) : 5/13/2008 7:33:54 PM (GMT-6)


puffed rice
Regular Member


Date Joined Feb 2008
Total Posts : 495
   Posted 5/13/2008 8:12 PM (GMT -6)   

Hi Kasey and welcome!  I take 8 salofalk tablets a day  for maintenace and when I'm flaring I have to increase that to 12 - 14 tablets.  I am also small 5'2" 118lbs and I've never had a problem with all those pills, it seems like alot but here I think it's normal.  I am also anemic but I have a problem with taking iron pills so I try to eat things that are higher in iron and get what I can in a multivitamin.  Its not enough but if I take more I get so constipated that I have more problems.  about a week ago I got these samples of liquid iron so I've tried taking a spoonful a day and it seems tolerable, not sure if its helping yet, I'll have to wait until my next bloodwork.


Diagnosed with Ulcerative Colitis 1995
Salofalk Tablets , salofalk suppositories or cortifoam nightly
Bio-K Probiotic daily
multivitamin
metamucil nightly


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 5/13/2008 8:30 PM (GMT -6)   
Kasey, I said in the other post that your Doc may lower your amount of pills. Sorry, but that's probably incorrect. I don't know if they would lower it, you are not on a high dosage right now. I know it seems like you are, but quite often that is the amount taken for maintenance....I haven't heard of anyone being on less than 4 a day. I hate to tell you this, but they they may increase it to 6 if you don't improve as they wish, but again, 6 really isn't that bad. This medication is not bad as far as meds go. I am one of the lucky ones that are helped with Sulfasalazine. Alot of people on here take much more potent drugs to get into remission. Some Docs don't even give this drug a try. I'm glad they have started you on this and I hope it helps you. So, consider yourself lucky that this is the medicine of choice by your Doctor. My Doc was talking about starting me on 6mp (an immunosuppresant) and I was pretty scared about that, but then I went on this and it's gotten me back into remission. I know it's a shock to go from not taking any pills to now taking 4. But, believe me, in my opinion, this drug has alot less possible side effects. Hope you see some improvement. Has your Doc said anything about rectal meds?


*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema 2 x a week. Omega 3, Probiotics, multi vitamin, cacium supplement, Biotin....
 

Post Edited (munchkindd) : 5/13/2008 7:58:24 PM (GMT-6)


rdm
Regular Member


Date Joined Apr 2006
Total Posts : 229
   Posted 5/13/2008 9:04 PM (GMT -6)   
It is probably not excessive.  The idea is to get the inflammation under control quickly.  Nearly 25  years ago this was the drug I was put on upon diagnosis, I am still on it. I definitely understand your reluctance to go on meds, I felt the same way.  This is a fairly benign drug, though some are allergic to it, after some headaches I adjusted and taking the pills is just routine and no big deal.  Though four times a day is a hassle I would, for now stay with it. At some time in the future you probably can switch to 2 or three times at a higher dose per time.  This is clearly not as good but I found I wasn't remembering to take the meds so I started taking them morning and evening, this has worked for me but get your inflammation undercontrol before tinkering with timing.

Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 5/13/2008 9:30 PM (GMT -6)   
I would ease into it over several days. They made me sick. Although I was sick already.
Proctitis DX 1998
Lialda 1x day
Hydrocort Enema As Needed


KaseyF
Regular Member


Date Joined May 2008
Total Posts : 65
   Posted 5/13/2008 9:38 PM (GMT -6)   
Thanks everyone. I feel better now after reading all your stories. I was a bit freaked out today after getting the diagnosis. I'm still really nervous to start the meds tomorrow. (I didn't start them today because I wanted to research.)

There's still so much to get used to. Just remembering to take them at the appropriate intervals will be hard enough. I actually put alarms in my phone because I have a horrible memory for this kind of stuff, and until I get into a strict routine, it will be hard for me to get used to taking these so often.

After looking up all the symptoms of UC, I can't believe I hadn't realized i had it before. Apparently this has been going on for years. Eight years ago, I had similar stomach problems and they tested me for the wrong thing. They x-rayed my stomach (found nothing wrong) when I clearly needed a colonoscopy. I'd been suffering with this ever since then and had no idea it might be treatable. It wasn't until recently that it became unbearable, causing me to seek a doctor again. (I actually thought I had a virus that wouldn't go away. A lingering 24-hour stomach bug!)

But everything I thought was related to my anemia (like my low-energy, constantly tired) is probably associated with UC instead. I had every symptom on the checklist!

So I'm looking forward to my life improving in that way, even if I have to take a few pills to do it.

My doctor told me he wanted to start me on these pills first because they had the cheapest co-pay and he liked to give his patients this option if it worked for them. Also, he said another brand would mean taking more pills than four per day. I have another appt in two weeks and I'm assuming we'll gage my progress then.

He did not prescribe folic acid, nor tell me to take a multi-vitamin or anything, so I'm wondering about that now. Perhaps I should look into foods high in folic acid?

Foods high in iron don't do the same thing for me that the iron supplement does. I always feel cloudy in my head until I take an iron pill and suddenly everything is clear. I'd hate to lose that. It makes me so productive. I find I have a hard time concentrating and being creative (I'm a writer by trade) when I'm low on iron, and even eating a whole truck of spinach doesn't have the same effect as the pill. It definitely doesn't constipate me! But maybe after I start taking the UC meds, it might?

Thanks everyone. I'm glad I found this site. I felt a bit lost today, with no one to ask.

RunsNdFamily
New Member


Date Joined Apr 2008
Total Posts : 9
   Posted 5/13/2008 9:38 PM (GMT -6)   
My dad took that many moons ago. The inital dose made him sick. He played with the dosage until he found something that didn't make him sick, but worked on the symptoms too.

I'm supposed to take 9 colazal/day, but only take 3. 9 give me the runs, 6 give me very loose stools, 3 makes for a more normal bm.

I've never told the doc about this. It's cheaper for me to keep getting the 9 doseage and use it over 3 months.
Left sided (40cm) Diagnosed 10/02
Colazal 3 pills/3xday
Azathioprine 75 mg
Calcium Supplement
Occasional Immodium
 


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 5/13/2008 10:01 PM (GMT -6)   
I would definitely ask your Doc about the folic acid. You should also tell him about the Iron supplements you are taking, if you haven't already. I believe Iron can decrease the absorption of Azulfadine. Perhaps you may want to look this up. This is what I have read: the site is: http://www.peacehealth.org/kbase/cam/hn-1504003.htm

Folic acid

Sulfasalazine decreases the absorption of folic acid.1 Biochemical evidence of depletion of folic acid has been reported in people taking this drug,2 although available evidence remains mixed.3, 4

Folic acid is needed for the normal healthy replication of cells. Perhaps as a result, there is evidence that folic acid can reverse precancerous changes in humans.5 Ulcerative colitis, a disease commonly treated with sulfasalazine, is associated with an increased risk of colon cancer. Folate deficiency has also been linked to an increased risk for colon cancer.6 It is plausible that some of the increased risk for colon cancer in people with ulcerative colitis may be related to folate depletion caused by sulfasalazine.

Folic acid supplementation may help protect against colon cancer.7 One study found that people who have ulcerative colitis and who supplement with folic acid have a 55% lower risk of getting colon cancer, compared with ulcerative colitis patients who do not supplement with folic acid (although this dramatic association with protection did not quite reach statistical significance).8 Researchers at the University of Chicago Medical Center reported a 62% lower risk of colon cancer in folic acid supplementers.9 They suggested that the link between folic acid supplementation and protection from colon cancer may well be due to overcoming the folic acid deficiency induced by sulfasalazine.

Many doctors believe that it is important for all people taking sulfasalazine to supplement with folic acid. Folic acid in the amount of 800 mcg can be found in many multivitamins and B-complex vitamins. People wishing to supplement with more-typically 1,000 mcg per day-should consult their doctor.

Iron

Iron can bind with sulfasalazine, decreasing sulfasalazine absorption and possibly decreasing iron absorption.10 This interaction can be minimized by taking iron-containing products two hours before or after sulfasalazine.

Hope this helps.....
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema 2 x a week. Omega 3, Probiotics, multi vitamin, cacium supplement, Biotin....
 


KaseyF
Regular Member


Date Joined May 2008
Total Posts : 65
   Posted 5/14/2008 7:13 PM (GMT -6)   
EDIT: my mom, who took me for the colonoscopy, reminded me the doctor told me to refrain from iron at least until my next visit. I was (understandbly) still groggy when we discussed this so I didn't remember.

As far as the folic acid, I tried to eat foods rich with it today, I'm going to inquire about this at my next visit, which isn't for two weeks. I'm also curious if I should be taking a multi-vitamin too. I'm currently making a list of questions to ask him.

Progress report!

So far I've taken 3 of the Sulfa pills. Last one tonight before bed. How soon do side effects start with this pill? So far I've had none. Actually, my head has been SO CLEAR, much more clear than when I take iron. I also had much more energy today. Normally, I'm draining by 3 or 4, can barely function at work, but I didn't experience that at all.

My biggest problem with the pills is that they are HUGE and they are hard for me to swallow, they keep getting lodged in the back of my throat and I have to guzzle water to get them down. This freaks me out.

I still didn't have an appetite today. I don't think it's the Sulfa. I haven't been able to eat much since the colonoscopy yesterday. I'm just not hungry, but I can keep the food down.

As far as my stomach, until 6:30pm, it barely even rumbled (very rare for me), but then I had two run-for-the-bathroom moments as soon as I got home from work. Loose, but no blood. Still, that's much less often than normal. Could be a result of my lack of diet the last few days though.

I started a diary to track my progress.

So am I right to assume I am lucky to not have a side effect yet? Or is it too early to determine this?

Post Edited (KaseyF) : 5/14/2008 6:16:10 PM (GMT-6)


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/14/2008 7:29 PM (GMT -6)   
Kasey,
I frequently have problems with swallowing these huge pills and actually, I had to stop taking Colazal because they kept getting stuck in my throat where they would then dissolve and make me really sick and make my throat BURN like crazy. I went in for an endoscopy (like a colonoscopy but going in your mouth; a little more pleasant!) and they found my esophagus needed to be dilated, which really helped me be able to swallow everything much better. Basically they just stretched it out. I would mention this to your doctor next time you see him and see what he thinks!
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 5/14/2008 7:37 PM (GMT -6)   
I take a multi vitamin daily and don't have a problem, my GI knows that I take this along with other supplements and she's fine with it. I can't really tell you when you can expect to see an improvement with the sulfasalazine because everybody is different. I also don't know how long it would take to see if you will have a reaction (allergy) to this, I never had a problem at all. I was first put on this 27 years ago at age 21. I think it improved my condition within a few weeks, but that was a long time ago and I don't really remember it too clearly. I stopped taking it after roughly 16 years or so against Doctor's wishes. ( a different GI than I have today) I did this because I was doing so well and I just got sick of taking all the pills. I started a flare over 2 years ago and was on another med which didn't work. After going back on the azulfadine this time, it took about 2 months to get back into remission. And those 2 years that I was on another med was the worst 2 years I ever had with UC. I was so psyched to get back into remission though after being back on the sulfasalazine for 2 months. I believe the rowasa enemas also helped get me into remission. ( I know, YUCK, enemas) I never thought I would do them, but they are no big deal and they really get to the heart of the problem and start to work fast. Alot of members on this forum find them to be very helpful. When you are hurting real bad, you will do almost anything to see some improvement. Make sure you drink lots of water with the sulfasalazine as instructed. The dose you are on is a low dose, your GI may be seeing if it agrees with you and then slowly adding from there. I know that if people experience allergic reactions, they can be desensitised (sp) by starting at a low dose and gradually adding. Good luck, I hope you see some improvement soon.
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema 2 x a week. Omega 3, Probiotics, multi vitamin, cacium supplement, Biotin....
 


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 5/14/2008 9:21 PM (GMT -6)   
Kasey - You may never get side effects. If they aren't there, why worry about getting them? I know it's hard not to worry, but keep in mind not everyone gets side effects from these meds. I did get a few side effects a few days after first starting Asacol (similar to sulphasalazine), but I was also on Flagyl (an antibiotic), which could have been the cause. They went away after a few weeks when my body adjusted to the meds.

As for your dosage, unfortunately, 4 pills is not a lot when it comes to UC. It actually seems like a very low dose. I take 12 pills of Asacol (4800 mg)/day, plus a probiotic, multivitamin, zinc and 2 calcium and Vit. D tablets. A nightly 5-ASA enema or suppository is also thrown into the mix, just to keep it interesting. =) It seemed like a ton of medication to me at first, but now that I'm used to it, it isn't so bad.

I would ask your doctor about taking folic acid. You can also ask him or her about the multivitamin. I had a GI at Mayo Clinic tell me there is no need to take a multivitamin, but I still take one anyway. I figure it can't hurt.

Welcome to the forum, by the way. This is a great place with so many helpful people and lots of great information. Hope you feel better soon.
24 years old
Diagnosed with UC March 2007; yet to go into complete remission
Asacol 4 tablets 3x/day
Rowasa (generic) - nightly; Canasa (1,000 mg) in the morning
Nature's Way Primadophilus Reuteri 2/day; Chewable multivitamin; Metamucil; Viactiv


Pooie1981
Regular Member


Date Joined Mar 2008
Total Posts : 274
   Posted 5/14/2008 9:29 PM (GMT -6)   
I am on the same dosage of Sulfasalazine. I started it about 3 weeks ago. The pills are hard to swallow.. it says to take them with alot of water anyway. I also found it helpful to take them after I eat because otherwise I felt sick to my stomach. I began getting headaches <major ones> about 3 days ago. I told my doctor about them this morning so now I am down to two pills a day instead of the 4. But my abdominal pains have also gone away with taking 4 per day. Hopefully cutting back to two a day will keep me in remission.

Good luck... they are not that bad !!
Jenn 26/female
Ulcerative Colitis Diagnosed May 2004
Sulfasalazine 500MG 4 times per day
Daily Vitamin for Women and Folic Acid


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 5/14/2008 9:36 PM (GMT -6)   
I also wanted to add that Asacol tablets aren't that large. So, if you find it really hard to swallow the large pills, you could ask about switching to Asacol. I hate big pills, too.
24 years old
Diagnosed with UC March 2007; yet to go into complete remission
Asacol 4 tablets 3x/day
Rowasa (generic) - nightly; Canasa (1,000 mg) in the morning
Nature's Way Primadophilus Reuteri 2/day; Chewable multivitamin; Metamucil; Viactiv


KaseyF
Regular Member


Date Joined May 2008
Total Posts : 65
   Posted 5/15/2008 8:15 AM (GMT -6)   
Thanks everyone for these stories. They really help to make me feel better.

So far I haven't had a stomach ache with the pills. I did try to eat something before bed, which i really wasn't hungry for. Do you all eat before bed when taking the last pill?

I've definitely not improved yet in the run-for-the-bathroom department. It's only 9am for me and I've already gone 5 times. Commuting was painfully difficult this morning because I'm trapped in a subway for 20 minutes without hope of a bathroom, and I struggle to hold everything until I can get near one.

Can I ask a silly question? I'm sorry if I'm being annoying, just trying to educate myself. Can you feel the pill releasing its stuff? All day yesterday, I felt like my colon was vibrating. Maybe vibrating isn't the right word. More like...how your body vibrates a little when there's a loud bass sound blasting, or you stand too close to a speaker, or you're on the train and can feel the movements. But it was all concentrated in one specific area of my body.

I don't think this is a bad thing, it means to me the pill must be working, but I find it strange that I can FEEL it working.

As far as swallowing the pills, it's still occurring where it briefly gets stuck in my throat and then water moves it downward. I'm hoping I get used to it. I know Asacol can be more expensive than the Sulfa pills and I'd like to keep my finances down since I'm trying to save $$$ for a house.

-Kasey

malka
Regular Member


Date Joined Apr 2006
Total Posts : 171
   Posted 5/15/2008 8:23 AM (GMT -6)   
I have been taking sulfasalazine for over thirty years and have never had any side effects (except for orangey urine). I am just about your height and weight and take 8 pills a day. After one GI recommended it, I found that the coated entabs work better for me. They are also long and skinny as opposed to round, making them easier to swallow. Since they are time released, I take 4 with breakfast and 4 with dinner. I've never felt any "quivering". Are you taking the pills with food?

M
Diagnosed UC 1975. 
Azulfidine Entabs 500 mg. 4 twice a day
Azathioprine 100 mg per day
Colocort - as needed
Folic acid, vitamins C and D, multivitamin, metamucil, fish oil, turmeric 
 
Hospitalized 1997 - intravenous cyclosporine.


KaseyF
Regular Member


Date Joined May 2008
Total Posts : 65
   Posted 5/15/2008 8:34 AM (GMT -6)   
Yes, I've been taking them with each meal (ex: I had a blueberry scone this morning.) The only exception was right before bed, I ate only a bite or two of a brownie, took the pill, then went to bed. So i didn't feel anything then.

I'm also drinking lots of water. That's not a change in my routine though. I've always consumed at least eight 8oz glasses per day.

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 5/15/2008 9:05 AM (GMT -6)   

In my experience, a therapeutic dose is 2 500mg tabs, four times a day... which is more than you're currently taking, so no, it's certainly not an excessive dose. A maintenance dose is 1 500mg tab, four times a day, which is the dose I stay on most of the time when I'm in remission and am symptom-free.

Sulfasalazine is a great ASA drug choice for those who can tolerate it and it's relatively safe... much safer than steroids or immunosuppresants. In the beginning, I felt like you do: I never took drugs and it was depressing to have to take so many pills all day long. (I take an iron-free multi-vitamin, fish oil caps, digestive enzymes, etc.) But with time, you'll get used to it and it will be no big deal. I take my pills with breakfast, lunch, mid-afternoon snack and dinner, so it's easy to remember. When I was younger, I had a mental block and couldn't swallow pills at all, but now I can take two large ones at once with no problem.


Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal.
 
 


Pooie1981
Regular Member


Date Joined Mar 2008
Total Posts : 274
   Posted 5/15/2008 12:52 PM (GMT -6)   
I have never actually "felt" them working. The rumbling feeling that you are talking about reminds me of the feeling I get before I have the diarrhea. I also forgot to mention that they caused me urine to be a much darker yellow as well. Nothing to fret over. I also had a problem with trying to eat something with every pill, especially the bedtime one. Sometimes I would just have a yogurt or can of fruit or something small like that with the last pill. Personally I found it very important to eat and then take the pill otherwise I would my belly would feel really yucky.

Just remember that there are no silly questions on these boards.. :) Feel free to ask anything about anything the people here are extra supportive. :)

Good luck !
Jenn 26/female
Ulcerative Colitis Diagnosed May 2004
Sulfasalazine 500MG 4 times per day
Daily Vitamin for Women and Folic Acid


KaseyF
Regular Member


Date Joined May 2008
Total Posts : 65
   Posted 5/15/2008 3:20 PM (GMT -6)   
"The rumbling feeling that you are talking about reminds me of the feeling I get before I have the diarrhea."

I get a completely different kind of rumbling before diarrhea. That kind starts in my stomach and feels like my stomach dislodges from my other organs and twists and turns like its on a roller coaster in my body.

This is different. It's very...subtle. I feel it right above the spot where my butt meets the chair, which i assume is around my colon. It doesn't hurt, it just feels like there's a low, quiet, vibration. It seriously feels like the drugs are releasing in my body.

I'm almost positive it's related to the pills because I never felt this before yesterday.


Good idea on the can of fruit to eat at night. I'm going to pick some up today. I really didn't even know what to eat last night and I'm sure brownie was the wrong choice. I'm not a fruit person, but it's probably better than brownies.

Pooie1981
Regular Member


Date Joined Mar 2008
Total Posts : 274
   Posted 5/15/2008 5:18 PM (GMT -6)   
LOL. Yeah, I have been cutting back on my sodium and sugar intake lately so I have been eatting alot of canned fruit a yogurt. Another idea is the Carnation Instant Breakfast milkshakes. They are almost like a complete meal replacement, they have lots of vitamins in them. It just feels like you are drinking a glass of chocolate milk. :) Of course, not a good idea if you can't tolerate milk. But since I can I drink lots of them. :)

If you can feel the pills working well I guess thats excellent then !! I hope they work well for you !! Did you ever think of writing? You have an amazing way of explaining things.

:)
Jenn 26/female
Ulcerative Colitis Diagnosed May 2004
Sulfasalazine 500MG 4 times per day
Daily Vitamin for Women and Folic Acid


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/15/2008 5:51 PM (GMT -6)   
"I've definitely not improved yet in the run-for-the-bathroom department. It's only 9am for me and I've already gone 5 times. Commuting was painfully difficult this morning because I'm trapped in a subway for 20 minutes without hope of a bathroom, and I struggle to hold everything until I can get near one."

Just wanted to share something that sometimes works for me when I'm driving home or something and am not near a bathroom and can't get to one right away.. I notice when I start panicking and thinking "oh no oh no, what am I going to do, I have to go NOW I'm not gonna make it, oh crap" it makes it a LOT worse. But if I take some slow deep breaths, close my eyes if I can, and try to relax as much as physically possible, it eases up some, at least enough for me to make it to the bathroom. I've only ONCE came close to having a full on accident, and it was because I was prepping for a colonscopy and even though I was laying on the couch right outside the bathroom, I still almost didn't make it on time.

But yeah, concentrated breathing really helps. Nothing is worse than having to go to the bathroom and not being able to.
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


KaseyF
Regular Member


Date Joined May 2008
Total Posts : 65
   Posted 5/15/2008 10:18 PM (GMT -6)   
"Did you ever think of writing? You have an amazing way of explaining things."

Thank you! Actually, I'm an aspiring writer. I have a literary agent and all that, but no publisher yet. The book is under consideration at a few places though. It's a young adult novel. (I'm a graphic artist for my day job since writing doesn't exactly pay me yet.)

Carnation Instant Breakfast is a great idea too! Thanks. I'm going to pick some up this weekend. I had pineapple tonight and feel much better about it.

I'm still feeling the "release" of the pills. All day now. It's kind of freaking me out. I figured out what it feels like. It's fizzing. Like, when you drop an alka seltzer into water. That's what it feels like in my colon.

I complained to my mom about it and she reminded me that I'm very in tune with my body and I always know when I'm ovulating and from which fallopian tube and all that, so she said maybe this is somehow related to me being aware of my body?

Thanks for the tip about the breathing exercises. I'll definitely try it. I haven't had any accidents yet, I can usually hold it, but it's uncomfortable. I know it must be mental too because it's been two days in a row when I haven't had to go during the work day, but when I get home, I go all night.
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