Getting fed up now.

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Scottishcammy
Regular Member


Date Joined Nov 2007
Total Posts : 124
   Posted 12/30/2007 10:26 AM (GMT -7)   
As the title says, this is the first time I've actually got down since being diagnosed, which isn't like me. Usually I'm very positive.

Diagnosed indeterminate colitis Nov 25th (I know, not long ago! VIEW IMAGE ). I said in some other posts, I mentioned to my consultant when I seen him about 1.5 weeks ago, I still have diarrhea & no control when I get the urge (i.e. toilet time NOW or it's a boil wash for SC's boxers!). He thought it might be the Pentasa (or I suppose, more accurately, the mesalasine) so he halved it from 4g to 2g per day and to continue tapering down 5mg prednisolone per week.

The day after i did that, I went to the toilet something like 12 times in the one day! I also had a few 'accidents' because I couldn't make the toilet (which is only ever about 20 feet away at most).

It settled down some what, but the routine now is:
toilet at least 4 times a day, at least twice in the morning. It's always a sudden painful cramp, run to toilet, then massive wind, diarrhea, then maybe some solids. However, it's always very painful now (whcih it never used to be), very crampy from start to finish. The 'solids' at the end take ages to come down and it's very painful.

Now, I've had a few bloody movements as well, and the last one last night, and the first 3 today have been a lot more blood than usual, very bloody water.

So, I'm really pissed off at the moment. I'm slowly thinking, what happens next? I still don't have any bowel control, I still have diarrhea, bleeding has come back. I feel like I'm treading water & halving the Pentasa seems to have done nothing. I still have 'leaks' now and then as well, usually when I pass wind or sometimes I don't notice until I go to the toilet and notice dampness on my boxers (sorry folks, not a nice subject, I know!).
I taperd down to 20mg on Wednesday there and really don't want to go back up as I want progression, not regression.

I'm going to phone the IBD nurse tomorrow and let her know, as the consultant said he wanted to know if I had bloody water as it shouldn't be happening.

However, I'm wondering, is this it? How can I go back to my work like this? Will I be put on the next batch of drugs now (aziothiaprine) and what if that doesn't work?
I have been ill over xmas (bronchitis) and wondered if that made it worse, but I'm getting better now and the bleeding started. Also, all the other probs were there before this.

Arrgghh, sorry folks, but the wonderful positivity I had been enjoying and decided to use, seems to be waining somewhat! VIEW IMAGE

Any suggestions/ideas much appreciated and sorry for moaning.

Diagnosed Indeterminate Colitis 25/11/2007
4g Penatas / day
40mg Prednisolone,
Solofalk Enemas
Omeprazole 20mg/day (stopped taking them myself, seem fine)
25mg Prednisolone
2g Pentasa/day
20mg Prednisolone
Omeprazole 20mg/day (started getting terrible heartburn so back on them...DOH!)
Calcium tablets
 
 
 


texasyankee
Regular Member


Date Joined Dec 2007
Total Posts : 28
   Posted 12/30/2007 11:03 AM (GMT -7)   
I completely understand your frustration. We feel so out of control of our own lives with this condition. The simple act of toileting is something we get mastery over by 3 years of age and here we are with not only no control but pain, stink and various foreign parts leaving our bodies at will. We can envision ourselves being well but not when it will happen. We can adjust our lives to accomodate the inconvenience and pain and focus on the things we have to be grateful for but it is also extremely difficult to not grieve for the life we had while in remission or prior to DX. Remember that stress makes things worse when we are flared. One rule I use for myself is to remember to not "should" on myself when I am already crapting on myself it makes for an even bigger mess to clean up. See the small things that are getting better each day and if you can't find something that is getting better look at the people who are there supporting you. You will get to a state where you can go to work, even if you need to use Depends. You will get to a place where you can manage the pain........I use Yoga breathing. As for other suggestions, I am totally juicing and pureeing food so as to give my colon a chance to rest.

Hang in there.
DXed with left sided UC in 1983 at 20 years of age
-Used prednisone for long periods in the early years (1983-1992) which resulted in severe osteoporosis
-remission through two pregnancies 1993/94 and 1996/97 no meds taken other than prenatal vitamins
-flare in 2000 didn't respond to methasalazane supps or enemas tried methatrexate; mostly in remission for 7 years
-July 2007 new flare with additional never before seen symptoms.....hormone related?, not responding to meds
 
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 12/30/2007 12:29 PM (GMT -7)   
I noticed in your tag line that you don't mention taking probiotics...probiotics can be very beneficial with symptoms for either crohns, UC and even IBS (irritable bowel syndrom)...we tend to have bacterial over-growth which exacerbates symptoms and a good probiotic (one that does not contain alot of preservatives and no sugar or artificial sweetners) can help a great deal for many...you should look into this and find a good one (one I use is called primadophilus reuteri, made by natures way...you can google for all the info on it) and VSL3 has been proven in studies to help tons.

It's important to take them everyday even if you're in remission.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


aksnowbunny
New Member


Date Joined Dec 2007
Total Posts : 13
   Posted 12/30/2007 1:40 PM (GMT -7)   

Scottishcammy:

Welcome to the crowd.  My son was diagnosed over a year ago with severe pancolitis.  When doc first dx'd him, he said no problem, he'll just take a couple pills a day and be on the road to recovery in no time.  He did forwarn us though that there are a few rare instances where some of these kids can take longer than a year to get into remission.  Well here we are and into some of the stronger meds available for kids now.  There have been many days he didn't make it through school and times he was on the verge of being hospitalized because he just lost too much blood and diarhea and had no strength to do much more than get out of bed.  But I will have to say that overall there is improvement compared to some days he's had.  But the way we see it, if they can't get this thing under control there is always surgery, and then he's cured!  :-)   No more 15 pills a day for that pore kid!

As far as the bathroom goes he's had periods with upwards of 20 BM's a day.  The nurse has been informed of this problem and gets him back into class or calls if it gets too bad.  If you have a good relationship with your employer I would encourage you to discuss with them the fact that you could potentially miss some work.  As a business owner myself, it would certainly come across better than not showing up.

And son tells me that he certainly has noticed stress is a contributing factor to the amount of bleeding.  And this doesn't just consist of stress from a bad day, but also stresses on the body like lack of sleep and colds.

Take care of yourself and hold your head high!


Christine, Mother 34, of 13yo boy
Diagnosed October 2006 Severe Pan Ulcerative Colitis
Meds: Colazal 750mg x 9, 6-MP 50mg, Vit D 400iu, Vit C 1000mg, Iron 50mg, Remicade 3rd infusion, Laughter
Prior Meds: Asacol, Prednisone, various antibiotics, homeopathics, special diets


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 12/30/2007 2:19 PM (GMT -7)   
Cammy, you may just be on the wrong 5-ASA product. Be sure to talk to your doctor about the possibility of switching to Colazal, as it has been much more helpful to many of us. Also consider following the suggestion to take a good probiotic. You should be able to get them at any pharmacy (chemist's?) or you can order them over the internet. If you do a search here, you'll find many discussions of probiotics.

For now, try looking at the amount of insoluble fiber you're eating - things like oats, other rough cereals, raw fruits and veggies, etc. Sometimes cutting those will help the cramping.

And hang in there. I think most of us have been where you are, I know I have. There are better things ahead, you just have to keep plodding forward until you get to them.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Intolerant to Asacol and rectal mesalamine preparations.
On Prednisone then Entocort 2001-2006 with only short periods off. 
Current meds are Colazal, Azathioprine and Remicade.
In remission since April, 2006. Remicade has been my wonder drug.
 


Scottishcammy
Regular Member


Date Joined Nov 2007
Total Posts : 124
   Posted 12/30/2007 2:31 PM (GMT -7)   
Thanks everyone! I'm trying to be positive, usually I am very, maybe it's coming down the steroids. I've been tapering 5mg/week and came down to 20mg on Wednesday. The consultant did warn me I might get a bit down with it.
Diagnosed Indeterminate Colitis 25/11/2007
4g Penatas / day
40mg Prednisolone,
Solofalk Enemas
Omeprazole 20mg/day (stopped taking them myself, seem fine)
25mg Prednisolone
2g Pentasa/day
20mg Prednisolone
Omeprazole 20mg/day (started getting terrible heartburn so back on them...DOH!)
2 x Calcium Adcal D3 tablets/day
 
 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 12/30/2007 2:53 PM (GMT -7)   
Pred always made me the greatest witch in the world. Yes, I cleaned that up. Between that the irritation because I couldn't sleep, I wonder that my husband didn't just kill me and put me out of my misery!

And like others, I always held in the back of my mind that if things became too unbearable, surgery would cure the UC.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Intolerant to Asacol and rectal mesalamine preparations.
On Prednisone then Entocort 2001-2006 with only short periods off. 
Current meds are Colazal, Azathioprine and Remicade.
In remission since April, 2006. Remicade has been my wonder drug.
 


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/30/2007 4:26 PM (GMT -7)   
It seems that having this disease really has it's ups and downs. It's easy to get down when you are on the tiolet all day, unable to leave the house, and feeling weak. It's a lot easier to be up when you feel normal which sometimes can be hard to feel. I tried so many meds and had the same problems as you until Remicade. Once I started it, I finally was able to not be on the tiolet all the time. Unfortunatley, I recently had a reaction to it but will try Humira. I used to be so fearful of the heavy duty drugs, but now for me I'd rather risk taking them than to live so miserably. I take Lomotil on really bad days. If I start having too many bms, I take one pill and it seems to slow down the movements or even stop them. It makes me drowsy and I usually sleep after I take it and am able to wake up a few hours later and feel better "most" of the time. You just have to be careful it doesn't back you up. I have to add that I totally recommend the book "The New Eating Right for a Bad Gut" by James Scala. It is an excellent book. I hope you are feeling better soon. (PS- I couldn't see the images you posted but I tried.)
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade,ulcer shrunk in 3 months August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed with Psoriatic Arthritis? & Fibromyalgia Current meds: Remicade 700mgs every 6 wks ( had a reaction will start Humira in 6 weeks) Lomotil, Darvocet, Clorazepate, Proctofoam HC, Back to Prednisone again :( for joint pain


MoonShadow
Regular Member


Date Joined Dec 2007
Total Posts : 52
   Posted 12/30/2007 8:13 PM (GMT -7)   

I know it is horrible and demeaning to consider but…………..maybe an incontinent nappy may assist.

 

I use to wear adult incontinent nappies. They are really only made for urine but the brand I use to buy worked well in the short-term for other little accidents as well.

 

I brought a range called DEPEND regular underwear; they also have “super” underwear for more absorbency.

 

If in the middle of a flare, you can wear them out with confidence in the place of normal underwear (but for added protection and security, I wore them under my normal underwear).

 

I have lost control of my bowels in many public places: shopping centres, gym, work and train whilst wearing the pad. It will “hold it in” until you can get to a toilet.

 

I was also wearing them at home, as a number of times I would lose control between the lounge room and the bathroom.

 

I also recommend the book: “Self Healing Colitis and Crohn’s” by David Klein.

 

.


MoonShadow.

Australia.

Female 37.

Sick since 1998 – finally diagnosed 2003.

No drugs (last drugs were taken in 2005).

Healing myself thorough diet & natural methods.

Using plant derived MultiGest Enzymes capsules as part of diet.

 

Feeling fantastic!


Peet
New Member


Date Joined Dec 2006
Total Posts : 9
   Posted 1/2/2008 4:06 PM (GMT -7)   
I'm going to get blasted for suggesting this. Please don't kill the messenger but if you are at the end of your rope you can do what I did. I am only doing this until a good medication or cure becomes available. Smoke 6 to 8 cigarettes a day and less if it still works. The carbon monoxide (not the nicotine as previously thought) will put you into remission. For me it always has and always will and any other colitis/smokers I know are in the same boat. I actually hate smoking and it disgusts me and yes it's bad but I am completely blood stool free with no symptoms ever ... until I quit smoking then it's back with a vengeance ... start again and it's gone within 3 days.
Think nobody cares if you're alive? Try missing a few car payments.


Sharann
Veteran Member


Date Joined Sep 2005
Total Posts : 778
   Posted 1/2/2008 4:57 PM (GMT -7)   
Peet, I have had similar experiences with smoking. The problem is, that at some point, the disease overtook even the smoking cure(so to speak).
My first flare occurred when I first quit smoking(The first time).
I still prefer to have bleeding rather than smoke and get emphysema. Even 6 a day is harmful. I am not blasting you because I have
even had a GI tell me that smoking does help with colitis, but he couldn't prescibe it in good conscience(meaning....)
Scottishcam, hang in there. The frustration is hard and the feeling out of control. We are with you.
I am a Certified Doxie Lover(Weinerdogs)


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4034
   Posted 1/2/2008 6:56 PM (GMT -7)   
Peet said...
Smoke 6 to 8 cigarettes a day and less if it still works. The carbon monoxide (not the nicotine as previously thought) will put you into remission. For me it always has and always will and any other colitis/smokers I know are in the same boat. I actually hate smoking and it disgusts me and yes it's bad but I am completely blood stool free with no symptoms ever ... until I quit smoking then it's back with a vengeance ... start again and it's gone within 3 days.
Peet - I smoke and still got UC and it does not put me into remission. So, now you know someone who isn't in the same boat. It does not work for all UC smokers. Glad it works for you though. And I thought no one knew if it was the nicotine or the carbon monoxide or what. There have been studies where the nicotine patch helped UCers.

Scottish - I hope things start looking up soon. Hang in there.


23 years old
Diagnosed with UC March 2007
Current inflamation in the rectum
Asacol 4 tablets 3x/day
Rowasa (generic) - as needed for flares
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D) for Osteopenia; flaxseed

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