New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

kc70
Regular Member


Date Joined Nov 2008
Total Posts : 112
   Posted 11/16/2008 10:53 AM (GMT -6)   
Hi. I am a 38 year old woman and I was diagnosed with UC just under a month ago. I've been having mild symptoms for almost a year, but things got really bad at about the beginning of September. At that point I started having very frequent diarrhea with blood and mucus, loss of appetite, abdominal pain and cramping, and chronic, crushing fatigue. I took lots of time off work during the weeks leading up to my colonoscopy (Oct. 22) and now my paid sick time from work is completely gone (I know I'm not supposed to let myself get stressed out but the potential loss of income here is quite distressing to me).

The colonoscopy found the UC, as I mentioned, and my doctor immediately put me on 1600mg of Asacol 3x/day. I worked my way up to that dose over the course of about a week. And for about 2 weeks I felt like things were improving. My stools were still very loose and watery but my appetite returned and my energy level went up. I didn't miss any work during that time. I did go back to ask my doc about a couple concerns, but she assured me that with the severity of the disease she saw in the scope, the longer healing time was to be expected.

Then, about a week ago, after a weekend with my boyfriend, I started feeling really lousy again. This was new: again my appetite disappeared, only this time I've been experiencing a lot of nausea. It's like my gag reflex is in about the middle of my tongue-- I can hardly put anything more solid than yogurt in my mouth without literally choking on it. I've tried really hard to keep myself nourished, eating frequent snacks like cheese, apple slices, yogurt, soups, and Boost nutritional supplements (which my doc recommended but which I think are actually making me feel yucky). I started feeling really depressed, and cried for about 2 days. I get a wave of nausea before I get the urge to use the toilet, which is about once every hour or two, including during the night. I started drinking some ginger tea yesterday but it only helped a little. Yesterday I actually vomited for the first time during this whole ordeal.

I guess I'm hoping for some advice, some support, something from you guys, to let me know this isn't unusual, or I'm not alone, or something. My doctor hasn't really been all that helpful, but I'm seeing her again next week so maybe I'll be able to articulate this latest misery to her a little better then. Thanks so much for reading.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30603
   Posted 11/16/2008 11:03 AM (GMT -6)   
Hi...welcome to the forum!

Where in the colon is your UC...limited or throughout?

Part of the reason I think you're having some gag reflex is because of the type of food you're eating...Try and eat as normally as you can...intake of protein, fluids, as balanced as you can. The snacks are good throughout the day, but you should have at least 2 or 3 actual "meals". Smaller in portion, but something you'll look forward to eating.

You should also consider a probiotic...to help keep the flora of your gut balanced...

I will strongly recommend you request a rectal med such as Rowasa if you're in the US .. it's a fluid retention enema...helps heal the rectum which the oral meds cannot reach. That might help ease some of the nausea.

As well...ask her for an antispasmodic...that as well will help some of the cramping and nausea.
I use dicyclomine...started with 10mg...it can be taken a few times a day.

Curious..what was your diet like before diagnosis?

Hang tough..it eventually evens out, but it takes time to figure meds, foods, etc to have us feeling better.

quincy
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec 2 or 3  +   1 or 2 Primadophilus Reuteri Pearls @ bedtime
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 11/16/2008 11:05 AM (GMT -6)   
I'd suggest keeping a diary of your symptoms to take with you. It's really easy for me to understate the severity of symptoms if I don't do this.

As far as your job, I'd suggest you speak with your supervisor or the HR department. They need to know you have medical issues and may need some accommodation. Also, go ahead and get your doctor to do FMLA paperwork. That gives you the equivalent of 12 weeks leave (unpaid, but it holds your job.) You don't have to use it all at once; it can be used in weeks, days or even parts of days. If you have short-term disability on your job, it will probably provide some income.

Good luck, and I think your doctor may want to look at different medication. Some of us simply can't take Asacol because it makes our symptoms worse. There are other options and it may be time to look at them.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Limeycricketlover
Regular Member


Date Joined Oct 2008
Total Posts : 67
   Posted 11/16/2008 11:16 AM (GMT -6)   
I had the problem with nausea and then vomitting as well - could hardly eat a thing. Several others on the board have been through this as well, so you are not alone. Top tip - keep a bucket or similar by your toilet - would have saved me a lot of cleaning up if I'd thought to. Yuck.

You probably need to see a gastro specialist to get the best advice, so it may be worth asking for a referal if necessary, however, it's very likely that your doc will want to put you on Prednisole for a time. If your doc doesn't suggest varying the drugs, I'd ask her about it.

Good luck!
UC - diagnosed Sep 2008 - Not seen GI since then...
Omeprazole 2 x 20mg
Prednisolone 5mg
Calcium (Adcal-D3) 3000mg
Mesalazine 8 x 500mg
Mesalazine foam enema
Multivitamins x 2
Omega 3
Probiotic (acidophilus)
Ferrous Sulphate 3 x 200mg

Unable to tolerate Paracetamol

Foods for me to avoid:
Any types of green leaf - big time.


kc70
Regular Member


Date Joined Nov 2008
Total Posts : 112
   Posted 11/16/2008 11:39 AM (GMT -6)   
Hi again,

Re foods, meals etc. I've tried to keep things "normal" but I can only get through about half of any meal before I just can't eat any more. I can't remember the last time I ate until I was full! I've been eating pretty bland foods: soups, crackers, like I described. I do try to eat regular meals as well. I'm a single mom so I at least have to eat with my daughter a couple of times a day :)

Before this all started, I ate pretty decently I think. I almost never ate fast food, and I just cooked lean meats, veggies, starches etc. at home. I've pretty much stuck to that, at least when I've felt semi-normal.

I'm not in the US, I'm in Canada. I'm not sure about the rectal meds you mentioned. As for the HR policies, I'm in a union and we have pretty generous leave. I never thought I'd use it all up! I do intend to talk to the benefits administrator and see if there's anything I can work out.

I have been under the care of a gastroenterologist. She was the one who did my colonoscopy and prescribed the Asacol. It's true, I don't think I was able to express to her just how terrible I've been feeling over the past week or so. I'll try to keep a diary.

Thanks for the suggestions.

Edit: I think my colitis is limited to the bottom portion.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30603
   Posted 11/17/2008 2:52 AM (GMT -6)   
Hi..you need to be on rectal meds. Since you're in Canada...Request Salofalk enemas, not the suppositories (my perspective/experinece..they're a waste of money/time).
12 Asacol is the highest dosage....i would suggest you discuss with the doc about tapering to a lower dosage of Asacol once you start on the rectal meds. At least if you get worse, you can increase if needed.

Seems like the food aspect is good as far as normal...proteins, and as balanced as possible.

I would also suggest a probiotic and a fibre supplement....

It'll take a while to get it all sorted out...

Keep us posted as to how you're doing.

q
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec 2 or 3  +   1 or 2 Primadophilus Reuteri Pearls @ bedtime
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


madabs
Regular Member


Date Joined May 2008
Total Posts : 388
   Posted 11/17/2008 8:49 AM (GMT -6)   
I just wanted double what Quincy suggests regarding the enema. I took the same dose of Asacol for a flare with similar results, I improved fairly quickly and then got worse again after a few weeks. Adding the enema every or every other night is helping getting things quieted down again.

Also with all that nausea you might want to cut back on the number of Asacol you are taking when and if you start the enema. Asacol, colozol and lialda all make me nauseous.
UC diagnosed 10/05, first symptoms 1983
asacol 12/daily and rowasa as needed 
Trying out Culturelle Probiotic
past rx: colozal, lialda, canasa
i can't complain, but sometimes i still do.  lifes been good to me so far.  -joe walsh


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 11/17/2008 9:22 AM (GMT -6)   
sorry you are struggling, it might be stress causing some of your symptoms. Can you take some time each day to lie down with some soft music and try to get your body to relax? or get a short massage? Don't worry about an odd diet or eating light, we all do that at times. Know that every time you eat you stimulate your bowels, it's more evident with us! So try not to eat too often maybe? and I agree you probably need something in addition to the Asacol.
I hope you feel better soon. I just accept that I have to work a lot when others would stay home if they felt like this. Sorry, that's a downer but there are worse things!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete probiotic first, then Forte pills. 
Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.
 
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, June 23, 2018 8:26 AM (GMT -6)
There are a total of 2,974,466 posts in 326,178 threads.
View Active Threads


Who's Online
This forum has 161279 registered members. Please welcome our newest member, Jason402.
350 Guest(s), 4 Registered Member(s) are currently online.  Details
artemis111, mrcanjar, hrpufnstuf, straydog