HealingWell
Search Close Search
☰

anyone has Ulcerative Proctitis, and what's your treatment plan, how did it go ?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/5/2013 11:18 AM (GMT 0)
Now to this forum, and want to share my experience, and how others have the same diagnoses or symptoms, how you cope and what meds works for you.

diagnosed with UP in may 2012, symptoms includes mucus with blood, severe cramp and pain on left abdominal area, urgent to go BR daily, (all the symptoms with ulcerative colitis).

Saw specialist, started with salofalk enema for 2 weeks, then the Dr thinks my condition is under control,asks me to switch to salofalk supp daily, too bad it was not the right decision, too early to change. Then, I saw another GI Dr, put me on cortifoam gel ( one spray,twice daily). this doesn't do anytime. Then, saw the 3rd GI speciliast, start me on pentasa 1 g BID and supp BID *twice daily* since November 2012, the symptoms are gone, have formed stool daily.

Recently, I seem to have the symptoms back again, mainly the right lower quart abdominal pain, I think its where the liver located. Did liver pannel lab work result all normal, waiting for Ultrasound next. I also have occasional mucus with scant amount of blood when I feel my stress level is increase.
Posted 3/5/2013 12:05 PM (GMT 0)
UP for 6 years. 1g pentasa enema at night. No flares while using meds
Posted 3/5/2013 12:34 PM (GMT 0)
Tira,

Welcome to the forum.

It's good to see that your symptoms are under control and the meds are working for you.

And I'm glad your doc is doing the liver panel, but you should get your kidneys checked as well IMO ( not because of the location of your pain), but rather because anyone on mesalamines should get both liver and kidney functions tested every 4 months or so.

Posted 3/5/2013 1:08 PM (GMT 0)

Petah said...
UP for 6 years. 1g pentasa enema at night. No flares while using meds

Did you take pentasa orally first or only use supp twice daily (1g every time)? How did you manage it ? Such as diet ? How were you diagnosed ? Did your dr thinks due to autoimmune disease ?
Posted 3/5/2013 2:01 PM (GMT 0)
UP for 25+ years. Have been in remission since 7/2011 with the regimen listed in my signature.
Posted 3/5/2013 3:33 PM (GMT 0)
Tira530, my first diagnosis was UP and I was treated with cortifoam at first and then mesalamine enemas. I took oral mesalamine, too, but only 1 g Asacol per day. This treatment plan was a result of a sigmoidoscopy. I didn't have a full colonoscopy until a couple of years later when my GI discovered I had inflammation on the right side as well as the left. That changed my treatment plan - I jumped from 1 g Asacol to 4 g Asacol per day.

How were you diagnosed? Your right sided pain is not consistent with UP. I appreciate that you are worried about your liver, but are you sure you don't have right sided inflammation as well as the UP?

I did not get complete relief with my 4g Asacol per day, although my UP got better with regular use of the mesalamine enemas. I ultimately changed from Asacol to Pentasa to better treat the right sided stuff, and that made a big difference.
Posted 3/5/2013 5:02 PM (GMT 0)
Thanks for your sharing your expeience. Before dr diagnosed that your inflammation is moving to right side of colon, during this period or years, did your life style or diet or anything Changed?

My GI dr says the chances of patients has COLON CA is low as who diagnosed with UP. He says UP usually stays in the same area ( where the lower part is rectum is ). What's your understanding from your dr?

Ps, are you living in states ?
Posted 3/5/2013 5:09 PM (GMT 0)
Tira, yes I live in the states.

I don't believe my disease changed. The diagnostic method used to find my UP was insufficient to find the right-sided inflammation. This is why I asked you how you were originally diagnosed. A sigmoidscope can only look as far as the sigmoid colon. It does not see the right side at all.

That being said, people with Crohn's disease can have inflammation anywhere in the digestive tract. It does not follow a continuous pattern. So even if I had only proctitis when I was first diagnosed, it is not a surprise that I later developed inflammation in the cecum (and then in the terminal ileum). There were no "lifestyle changes" associated with this pattern of my illness.
Posted 3/5/2013 5:29 PM (GMT 0)
My story is complicated and I believe it's from delay of treatment. I live in Canada but you probably heard the waiting time to see a spec list in GI field is 3-6 months. For me, when I first had the symptoms in dec 2011, I knew something is wrong but didn't imagine I would later have UP. sent to see Bowel obstruction specialist first, cuz my GP says while waiting for GI dr ( the right one to see), its not harm to see another one for opinion. That when I saw in may started salofalk. Treatment didn't work then August was when my symptoms got worst, finally had colonscope done, found out only lower part of rectum.

I got my liver profile lab work done, result all normal, waiting to have
U/S next. I kind of doubting my inflammation has moving to right lower quart ( finger crossed), as my only symptoms now is right side lower quart pain, pain means not sharp but dull and I can't lying sleeping on right side.
Posted 3/5/2013 5:36 PM (GMT 0)
I do notice one thing in common, the age of people who diagnosed with bowel related problem ( such as crohn or UC ) is in a much younger age than before. Crohn disease is more severe than UC.

For me, I think lifestyle, stress, my autoimmune system played a vital roles how I got this. I guess it's never too late to look after yourself. I have to admit its hard to accept the fact I have chronic disease, and it did take me a while to accept this.

Looks like you first diagnosed when you around 40s?
Posted 3/5/2013 6:21 PM (GMT 0)
I first became acutely symptomatic after the birth of my first child, when I was 37. Diagnosis took a year. Pregnancy is a pretty common trigger for inflammatory bowel disease, but from studies I read a few years ago the average age at diagnosis looks like a two-humped camel: most diagnoses happen in young adulthood or after age 50 (weird).
Posted 3/5/2013 6:29 PM (GMT 0)
How did you cope psychologically and emotionally? Besides talking to people or friends. Little down or low mood at present
Posted 3/5/2013 6:50 PM (GMT 0)
this forum was and is a great help. finding people to talk to about how your feeling is a good thing. i also exercise as often as I can. I found yoga to be very invigorating and a good emotional lift.
Posted 3/6/2013 12:41 AM (GMT 0)
My son had a colonoscopy yesterday and his inflammation has gotten very bad over the past few months. His is also very low and over to the left side and half way up. The doctor would not give him enemas until now, only oral Apriso. Of course now he is gonna prescribe the enemas and it is so bad he now needs Prednisone. I should have taken him to a new doctor.
Posted 3/6/2013 12:49 AM (GMT 0)
Dawn, it isn't too late to take him to another doc, no?

How about looking into LDN, low dose naltrexone?

Posted 3/6/2013 1:30 AM (GMT 0)
Insofla- I found a new doctor and we have an appointment in two weeks. I will ask about the LDN. His prednisone dose is high and tapering off within 6-8 weeks. Then they want to try Methotrexate. I so think the enemas would have prevented this!!!
Posted 3/6/2013 1:32 AM (GMT 0)
One reason I don't want to leave this doctor is they won't put him on 6-mp or Imuran.
Posted 3/6/2013 1:54 AM (GMT 0)
"One reason I don't want to leave this doctor is they won't put him on 6-mp or Imuran"

 "I so think the enemas would have prevented this!!!"

don't mean to sound like a jerk, but dr phil's show today is making me say this :

you make the decisions about your son's care, not the dr -

Posted 3/6/2013 3:06 AM (GMT 0)
Thank u soystud! I've got my backbone now!
Posted 3/6/2013 8:47 AM (GMT 0)
I have only ever used 1g pentasa at night. My symptoms have stay the same for six years. I was diagnosed with colonoscopy.
The only change has been from supp to enema, and that's was only two months ago! Touch wood I remain well till we all beat this :)
Posted 3/6/2013 10:10 AM (GMT 0)
Right sided pain under rib can be and is most likely constipation or wind.
Posted 3/12/2013 2:35 AM (GMT 0)
Hello Dawn, my daughter is 9 and also has UC. I formed a group on facebook that you might be interested in joining (we are not selling anything!) just almost 200 parents that we choose alternative treatments for our kids, some of them are still on drugs but tring to minimize the use of them. http://www.facebook.com/#!/groups/156555101109483/ the name of the group is alternative treatments for children with crohn's or ulcerative colitis. My daughter is on SCD diet, LDN, Boswellia, Curcumin, D3, B12, VSL #3 which I alternate with SCdophillus, slippery elm, L-glutamine, and I do Oil of oregano protocol when I see she needs it (ussually every 3 months).
The doctors cannot make you put him on 6mp if you refuse, but you need a plan of action.
Posted 3/12/2013 3:27 AM (GMT 0)
They don't want him on 6-mp but want to try Methotrexate. I had him on most of the alternative meds u list for your daughter and he got severely worse. The doc won't give us LDN and we havent tried Boswellia. I know foam or enemas would help. I worry that slippery elm blocked the absorption of his mesalamine Apriso. I just bought marshmallow root also. We just added vsl3 along with Renew Life ultimate colon. I will join the page for sure. Thx so much.
Posted 3/12/2013 3:30 AM (GMT 0)
How did u get the LDN and is all of this working for her? Is the inflammation gone?
✚ New Topic ✚ Reply