ulcerative proctitis

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jewelknit
Regular Member


Date Joined Jul 2009
Total Posts : 32
   Posted 7/16/2009 10:44 AM (GMT -6)   
This is my first chat and hope I'm doing it correctly.  I am 56 years old and was diagnosed w/ ulcerative proctitis when I was 31.  Have been on asacol, cortenemas, rowasa, mesalamine, prednisone...  Usually the prednisone would stop the flare up.  Unfortunately, I have been in a bout for 5 1/2 months (started after a 3 day flu) and nothing has helped.  Am in the bathroom anywhere from 3-17 times a day(have to wear a diaper in the morning).  I am finally starting on 6MP today and am nervous but excited and hopeful. Any thoughts, suggestions...  I can't take this and the quality of my life has really been affected.

qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 7/16/2009 11:17 AM (GMT -6)   

Hey...welcome!

I suffer with UP too, I was diagnosed 18months ago and am suffering with it at the moment too, I've not been out of remission properly since I started getting symptoms 2 years ago. I don't seem to be getting anywhere with any of the meds I've been on, apart from the Pred, and my quality of life is pretty poor...I cannot manage full days at work and don't do anything much other than going to work - I suffer from fatigue with this really badly! I'm thinking about surgery and have been advised on here to look into Remicade.

I'm afraid I don't have any advice for you because it looks like you've been taking pretty much the same sort of meds as I have, and you have had it way longer than me so probably know way more about it than me! But take a look around the site, there are a lot of experienced people on here who really know what they are talking about. :)


23 year old female, from the UK. Diagnosed with Ulcerative Proctitis Jan '08. Hospitalised Jan '09 for 3 days IV Hydrocortisone - had no effect! Hospitalised Feb '09 for 7 days (5 days - IV Hydrocortisone)
  
Currently taking daily: 
5mg Prednisolone tablets (tapering), 100mg Azathioprine (started taking 11th May),1g Acetarsol suppository, Asacol suppository (alternating nights)1g Mesalazine granules x 2 
Motilium (anti sickness), 1.5mg Zopiclone (taken when needed for sleeping), 10mg Citalopram (anti-anxiety), Probiotic Multivitamins, Nutren Build up drinks. 
                             
                             


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 18002
   Posted 7/16/2009 11:37 AM (GMT -6)   
The only thing that aids my proctitis issues is cortifoam (steroid based enema), the sooner you start it the quicker it will clear it up (for me at least).

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


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 7/16/2009 11:55 AM (GMT -6)   
pb4 said...
The only thing that aids my proctitis issues is cortifoam (steroid based enema), the sooner you start it the quicker it will clear it up (for me at least).

:)

My consultant won't give me enemas anymore, he said they go too far into the rectum and miss the area where the proctitis is?!
23 year old female, from the UK. Diagnosed with Ulcerative Proctitis Jan '08. Hospitalised Jan '09 for 3 days IV Hydrocortisone - had no effect! Hospitalised Feb '09 for 7 days (5 days - IV Hydrocortisone)
  
Currently taking daily: 
5mg Prednisolone tablets (tapering), 100mg Azathioprine (started taking 11th May),1g Acetarsol suppository, Asacol suppository (alternating nights)1g Mesalazine granules x 2 
Motilium (anti sickness), 1.5mg Zopiclone (taken when needed for sleeping), 10mg Citalopram (anti-anxiety), Probiotic Multivitamins, Nutren Build up drinks. 
                             
                             


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5507
   Posted 7/16/2009 12:22 PM (GMT -6)   
       I'm in the same boat...ulcerative proctitis.  It's located at the very tip and very stubborn, just won't GO AWAY!!!  I'm on 35 mgm of prednisone (weekly taper), 100 mgm of 6MP (been on 6MP for six years, but at a lower dose), Colazal (nine pills a day), Cort enemas nightly and Canasa in the am.  Is it any wonder I am a walking zombie? skull
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


jewelknit
Regular Member


Date Joined Jul 2009
Total Posts : 32
   Posted 7/16/2009 12:28 PM (GMT -6)   
Thanks  so much.  I wish you all had some magic advice!  Has anyone tried a restricted diet as prevention of bouts?

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5507
   Posted 7/16/2009 12:32 PM (GMT -6)   
     No, but I heard a lot about the SCD Breaking the Vicious Cycle by Elaine Gottshall.  I recently purchased the book but haven't started the diet yet.  Guess I like to eat too much.  I do restrict my diet.....no greasy, no fried, no spicey foods.  I eat a LOT of fish, especially salmon, yogurt, soft vegetables NO SALAD.  For breakfast I like rice krispies with Silk, half a banana with 1T of Red Mill Ground flaxseed MEAL on top.  Stay away from caffeine.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


maazee11
Regular Member


Date Joined Jul 2009
Total Posts : 55
   Posted 7/16/2009 12:39 PM (GMT -6)   
Hi all,
 
This is my first entry.  I was diagnosed with UP last July and have had 3 flare-ups.  The first two lasted about 6 weeks, but with the most recent one (at the end of June 09) I was more prepared and educated, so I started the meds right away and it seems (fingers crossed) to have settled down.  I find that Salofalk is the best for me.  I tried Proctofoam...it just kept my symptoms at the same level, but didn't relieve them.  I actually tried acupuncture with this flare-up and I don't know if it is a case of power of the mind, but I felt a lot better after the first treatment!  I have also eliminated gluten to see if there is any difference in how I feel.  Nothing so far on that front.
 
My question is does anyone else suffer from extreme fatigue after a flare-up?  I am exhausted.  I can barely make it through the work day and just lay on the couch when I get home.  Also, I noticed that I had a lot of back pain and other symptoms of inflammation in my body after this flare-up.  Anyone else notice this type of thing?  I am going to my doc tonight to enquire about this.
 
Thanks all.

jewelknit
Regular Member


Date Joined Jul 2009
Total Posts : 32
   Posted 7/16/2009 12:40 PM (GMT -6)   
Will look at the book. Surprised you eat yogurt. Dairy products rip me up. I too am a foodie and love to cook and bake.

Sore Tum
Regular Member


Date Joined Jun 2009
Total Posts : 144
   Posted 7/16/2009 12:50 PM (GMT -6)   
I've found that prednisolone has really helped and I'm trying a low residue diet to keep things in check, it sems to be working for the time being.
30 year old, female.
Diagnosed with severe ulcerative proctitis, Mar 2009. Awaiting surgery for 2 fistulas. (Doc unsure if it's Crohn's)
Currently taking, 1200mg asacol TDS, 1g Pentasa supp at night, 30mg pred (tapering over one month)
Probiotics, zinc supplements, Cod liver oil.


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 7/16/2009 1:02 PM (GMT -6)   
maazee11 said...
 
My question is does anyone else suffer from extreme fatigue after a flare-up?  I am exhausted.  I can barely make it through the work day and just lay on the couch when I get home.  Also, I noticed that I had a lot of back pain and other symptoms of inflammation in my body after this flare-up.  Anyone else notice this type of thing?  I am going to my doc tonight to enquire about this.
 
Thanks all.
Yep...fatigue is my worst symptom..its so bad some days and I get really shaky, headachey and lightheaded; and like you cannot make it through the day, and even if I do I'm whacked out for the evening.
 
And yep I also am very achey - especially in my back, however I'm not sure whether this is from my meds or from the disease, or maybe a mixture of both.
23 year old female, from the UK. Diagnosed with Ulcerative Proctitis Jan '08. Hospitalised Jan '09 for 3 days IV Hydrocortisone - had no effect! Hospitalised Feb '09 for 7 days (5 days - IV Hydrocortisone)
  
Currently taking daily: 
5mg Prednisolone tablets (tapering), 100mg Azathioprine (started taking 11th May),1g Acetarsol suppository, Asacol suppository (alternating nights)1g Mesalazine granules x 2 
Motilium (anti sickness), 1.5mg Zopiclone (taken when needed for sleeping), 10mg Citalopram (anti-anxiety), Probiotic Multivitamins, Nutren Build up drinks. 
                             
                             


maazee11
Regular Member


Date Joined Jul 2009
Total Posts : 55
   Posted 7/16/2009 1:08 PM (GMT -6)   
Thanks for your response Qwerty...are you still fatigued after a flare-up? I am just getting over a flare-up and that is when the aching and fatigue started. I can't remember having it this bad with my other flare-ups. It's nice to hear that some people understand...my husband is clueless and thinks I am trying to get out of cooking dinner at night!

jewelknit
Regular Member


Date Joined Jul 2009
Total Posts : 32
   Posted 7/16/2009 1:31 PM (GMT -6)   
I don't get achey but I have attributed the fatigue to the loss of so much fluids, nutrients and blood. Also, the havoc the body goes through.

maazee11
Regular Member


Date Joined Jul 2009
Total Posts : 55
   Posted 7/16/2009 1:33 PM (GMT -6)   
That makes total sense jewelknit. Thanks for that insight.

qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 7/16/2009 3:16 PM (GMT -6)   
maazee11 said...
Thanks for your response Qwerty...are you still fatigued after a flare-up? I am just getting over a flare-up and that is when the aching and fatigue started. I can't remember having it this bad with my other flare-ups. It's nice to hear that some people understand...my husband is clueless and thinks I am trying to get out of cooking dinner at night!
Well I haven't ever properly been out of a flare to be honest, I have been having symptoms for over 2 years now, diagnosed 18months ago. They just haven't got me sorted on the right medication etc yet! But I've been having feelings of fatigue for the entire time, however its got considerably worse as the actual disease has got worse, and as I've been put on stronger meds.
 
Like I said in my previous post it is my worst symptom and the one that gets me down and interrupts much of my life. I can't handle working full time at the min, and don't do anything much other than go to work. Some things I have found helpful though are...
- Planning out my days/week - ie don't plan too much in one day but spread it out. And if you do have a particularly busy day (even if its doing something you enjoy) make sure you leave adequate time to 'recover' and rest.
- Make sure your days off are in fact days off' and not spent doing too much.
- Take vitamins and make sure you eat the right foods - fruits and veg etc.
- Drink plenty of water
- Sounds obvious but get as much sleep as you can.
- Not sure what your job is but if possible try and split your breaks up - ie I work in retail so am on my feet much of the day...I tend to try and have a short break every 2 hours.
 
Hope thats some help! :)
23 year old female, from the UK. Diagnosed with Ulcerative Proctitis Jan '08. Hospitalised Jan '09 for 3 days IV Hydrocortisone - had no effect! Hospitalised Feb '09 for 7 days (5 days - IV Hydrocortisone)
  
Currently taking daily: 
5mg Prednisolone tablets (tapering), 100mg Azathioprine (started taking 11th May),1g Acetarsol suppository, Asacol suppository (alternating nights)1g Mesalazine granules x 2 
Motilium (anti sickness), 1.5mg Zopiclone (taken when needed for sleeping), 10mg Citalopram (anti-anxiety), Probiotic Multivitamins, Nutren Build up drinks. 
                             
                             


maazee11
Regular Member


Date Joined Jul 2009
Total Posts : 55
   Posted 7/16/2009 7:25 PM (GMT -6)   

Thanks again Qwerty.  Sorry to hear that this has been a chronic thing for 2 years.  I can't imagine the frustration you feel.  I was lucky.  My family doc got me in with a specialist right away when he realized he was out of his depth.  The specialist I have is like 100 years old, but very experienced and diagnosed me right away.  Salofalk works like a charm so far.  But I do know that this was originally brought on by a suspected listeriosis outbreak in my city last year and has since flared up with viruses and stress.  And my paternal grandmother had colitis and Crohn's...so someone in the family was sure to get it.  Lucky me.

I like your idea of spreading out activities and using days off to recover.  I have to learn to do that more.  Again, I am lucky in that I work for the government, so breaks are mandated.  But even then, I still feel so exhausted all day long. 

I just got back from the family doc who told me that this is totally normal, and that the aching could be the inflammation travelling elsewhere or it could be the starts of arthritis, which he said is common with inflammatory bowel diseases.  Yay!  Another thing to look forward to.  He is running some blood, so we'll see what comes from that. 

BTW, I should add a signature like everyone seems to have.  I am a 35 year old female from Toronto, Ontario, Canada.


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5507
   Posted 7/16/2009 7:55 PM (GMT -6)   
     I am very fatigued but credit that to all the meds.  While on prednisone I have to carefully monitor my blood pressure as it shot up to 210/110 last year while I was flaring and I had to be hospitalized for ten days.  So far, so good on that part though.  I take Benicar and Toprol xl for the BP and it has been 110/66....yippeeee...something is working.  I should try taking a multivitamin which contains iron.  Maybe that will help.  Right now I am taking one which doesn't.
     I have to get into my profile to change the med info...can someone tell me how to do that?  I forgot...senior moments.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 7/16/2009 9:47 PM (GMT -6)   
Control panel up on top - click it on and follow from there.
 
Senior - diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works! (finding it impossible to do three times a day however)
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


1952crp
Regular Member


Date Joined Jul 2009
Total Posts : 21
   Posted 7/17/2009 6:26 AM (GMT -6)   
Try going to "great taste no pain" web-site. It has help me get back to solid stools & get off prilosec. have had colitis,proctitis, since '84. Good Luck

Jonesie
New Member


Date Joined Aug 2009
Total Posts : 4
   Posted 8/7/2009 5:23 AM (GMT -6)   
Hi there all,

Have just discovered this site by accident, and need advice so would be very grateful for anyone who can offer some! In particular I noticed that some of you have tried Acetarsol. I was diagnosed (very quickly) with UP 2 years ago, which was a suprise as my symptoms were so mild, I'm embarrassed to say I didnt know what all the fuss was about! Nearly a year ago, I started to have more symptoms. I've tried Pentas suppositories, Asacol pill & foam and reducing 30mg Prednisolone. The Asacol(mesalazine) clearly does not agree with me in whatever form. The short course I had of Prednisolone was at the same time as the Asacol foam, so I think that the benefits of the steroid were taken over by the horrible effects of the foam. Sorry for the ramble, but the point I want to make is right from when I first visited the specialist he mentioned an oppotunity to try Acetarsol. The reading I've done suggests that this is a 'drug of last resort'and havent seen anything about side effects, just the chance of Arsenic poisoning! I dont really want to be a guinea pig, but clearly need something other than the Asacol which my doc has taken some convincing was making me worse. So - bottom line - I'd love to hear from anyone who has tried Acetarsol and anyone who can simply cheer me ! I havent had a full nights sleep in a year and I have a tough job (aren't they all?) . I'm trying to not take too much time off, as it will stop me getting a job close to home or perhaps easier. My Boss is unsympathic and said simply get on with it or get out. It would be enough to drive me to drink, but I've had to give that up too!

maazee11
Regular Member


Date Joined Jul 2009
Total Posts : 55
   Posted 8/7/2009 7:24 AM (GMT -6)   
Hi Jonesie,
 
I found this quick blurb on the meds you are asking about  and it seems that poisoning only occurs after prolonged use (more than 4 years): http://www.crohns.org.uk/Docs/2/Acetarsol.html.  It also says that is should be used as a last resort if steroids haven't worked.  Did you try the steroids on their own?  The steroids did nothing for me...the mesalazine worked best, but you can't take it.  Try the steroids alone first and then see if you have to go to the Acetarsol.  I am sure your doc knows best.  Have you tried to change your diet?  That may help too. I eliminated yeast from my diet and feel much better.  about your boss...I would get documentation from the doc (a medical note stating you have an ongoing medical condition) and back it up with research on the Internet about the hardship UP or UC causes (if you aren't too shy to do so...some people would find it hard to talk about their bottom malfunctions) and try to get him/her to understand.  I think in most countries if you have medical documentation and you are let go, you have a case for wrongful dismissal.  Let's hope it doesn't get to that.  I think the frustrating part of this disease is that you can look so normal, but be suffering so much, so people don't get it.  Good luck!

Jonesie
New Member


Date Joined Aug 2009
Total Posts : 4
   Posted 8/7/2009 8:25 AM (GMT -6)   
Hi Maazee11

Thank you so much for replying. I did think about changing my diet but the info posted is confusing - lactose free, gluten free, so I didnt know what I could eat. I asked the specialist and he was adamant that food didnt make any difference, so I didnt change anything, but at my last visit he said to have a low residue diet which clearly states we should avoid certain foods! I'm losing faith in him knowing what he's talking about. I'm on reducing steroids 30 down tapering 5 each week and currently only on 10mg/day so its only a short course, but I'm supposed to still be using the Asacol foam but after the worst pains I have ever had in my life I stopped and the pain stopped too. I'm seeing him again next week. One option he suggested was an IV course in hospital but I was hoping to avoid that (MORE time off) and as I said I'm still hoping to change jobs but that wont be possible if people know. I have only told close friends and even then they got the edited version. Thanks for the link. Good to get info but I have no idea if I'll be able to work while I'm using the Acetarsol. I see the specialist privately and can afford the £50 - £100 per visit, but cant afford the £500 per day stay as I dont have insurance. As you say, we look so normal that its difficult for people to understand. Thank you for replying. I feel so tired and in some level of pain all the time that I cant imagine ever having a life again. Its good to know that I'm not alone though. Thank you

maazee11
Regular Member


Date Joined Jul 2009
Total Posts : 55
   Posted 8/7/2009 8:38 AM (GMT -6)   
Hi again,

I totally don't believe that stress and diet aren't a factor. I sometimes think the medical professon forget about the simple solutions because they are brainwashed by the pharmaceutical companies. We are all in the same boat on this page to varying degrees, so at least you know we understand. When I have a flare-up I avoid dairy, but continue to eat yogurt that has the live bacteria so that my gut can stay well balanced (if it is possible). I also stay away from high fibre things when I am having symptoms because they seem to aggravate matters. I tend to stick to things like chicken soup with noodles and root veggies, white rice, bananas, chicken...you know, the easy stuff. Then when I feel better I start to reintroduce more high fibre options. The gluten free way may be a solution...so many people are really sensitive to gluten. I don't seem to be, but I know a lot of people who suffer horrible GI issues when they eat glutenous foods. It is a hard transition, but once you i.d. products you like, it gets easier. I am a big cake and cookie person, so that is where my weakness got the better of me. But I do have to say that I have cut my gluten intake to about 10%. I'm not sure if it is helping or not, but what do I have to lose...other than weight. I have actually lost weight from reducing the gluten-type foods out of my diet. That's a plus!

Other than diet I have found that reducing stress is huge. I know it is impossible to eliminate it completly, but since I have been saying no to demands and yes to myself in terms of relaxation, I have felt much better. My doc suggested this mindfulness meditation. I live in Toronto, Canada and a lot of our hospitals run programs on how to do this as it is becoming a tool in doc's kits to help people with all sorts of problems including UP/UC, but I am on a waiting list, so I got a book on it at the library that is really great. I don't have the title right now (something about Catastrophe Living and Mindfulness), but it really has helped me reduce stress when I start to feel it and keep me level headed.

If I think of any other tips, I'll let you know. Again, good luck. And whenever you are feeling upset/stressed, come on here. I'm always around to help out.

lovemyboys09
Regular Member


Date Joined Apr 2009
Total Posts : 244
   Posted 8/7/2009 11:14 AM (GMT -6)   
I too have ulcerative proctitis. Started having issues 2 years ago and officially diagnosed in October 07. I am pretty much running out of options too my dr says. It is very very stubborn. Mesalamines and colazal have not worked. I have tried Immuran but had a horrible reaction that landed me in the hospital for a few days. I have been on prednisone for 4 months now and tapering has not worked. My dr is pushing remicade on me and I don't know how I feel about that (worried I guess would be the word). I had to have a TB test done and he wants me to have a flex sig next week before we start to make sure things are still the same. As of my last colonoscopy in April 09 my GI named it as severe ulcerative proctitis. All I know is I need off of this prednisone so I will probably try the remicade
Colonoscopy on 4/23-diagnosed with severe ulcerative proctitus
 Meds:
12 Asacol/day - don't think it actually is working
proctofoam at night
prednisone (10 mg) tapering - upped it again til august 6
Vitamin D
Calcium 
Azathioprine (50 mg)   serum sickness reaction 
pentasa  didn't work
canasa   didn't work
 
 
Waiting to feel healthy again and waiting on the next plan of action since can't take azathioprine....
 
 
 


Jonesie
New Member


Date Joined Aug 2009
Total Posts : 4
   Posted 9/13/2009 1:16 PM (GMT -6)   
Hi All & Maazee11 in particular,  This is the first time that I've looked at the forum for a while as things have not been good for me.  I seemed to go down hill fast - two very embarassing accidents, one at work and one in a supermarket when I had to clean myself up and buy new clothes. I think that morning will stick in my mind as one of the low spots in my life. More time off work but I'm past caring now. A high temerature, abdo pain and being sick on my Dr got me my first ever stay in hospital. After hydracortesone IV, I'm now convalescing at home. I've been on increasing Azathioprine until I'm now on my ongoing dose of 100mg, with steroids reducing from 40 mg now at 25mg. I had been really worried about going on the Aza. I've had some strange side effects but my blood tests are fine, and for the first time in a year I actually feel as if I have a life and can plan to leave the house without worrying. It's all very well being told to de-stress and  relax but that has been difficult for me whilst working hard to hold down a job and cope with the symptoms. Its only now I feel 'normal' that I can think straight. I'm keeping my fingers crossed that the Aza will do the job for me, but I've been told that its only a 3/4 year fix so I could be looking at going downhill again in the future. That really concentrates the mind! We are finally talking about holidays and even just going for a day out seems wonderful. Life has been hard for my husband too and its easy to forget the worry that our loved ones go through. My husband has been made redundant so changing my job at the moment isnt an option, but I know that I must take the advice and rest more - somehow! Thanks for listening. This past year has been so hard.
Does anyone else has any experience of Azathioprine? Were you also told that its only for a few years?
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