Hello all, recently diagnosed

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RichardUK
New Member


Date Joined Mar 2008
Total Posts : 3
   Posted 3/27/2008 5:10 AM (GMT -6)   
Hi everyone my first post here.

I have recently been diagnosed as having 'Indeterminate IBD' and my consultant started me on oral Pentasa 2g twice a day and rectal Asacol 1g once a day a week ago.

I'm hoping that if I describe my symptoms here others may be able to shed some light on which of the 2 forms I am suffering from

My first symptom (although I didn't know the significance at the time) was a patch of what I, and my doctor, thought was eczma on my leg about a year ago.
about 3 months ago I started to suffer from quite severe abdominal pain, usually shortly after eating.
about 2 months ago I started to get diarrohea , first of all 2 - 3 times a week but soon becoming daily and frequent (6 times + day and night)
Blood and mucous started to appear fairly soon after that.

I visited my GP shortly after the bouts of abdo pain began, unfortunatly his initial diagnosis was a bit off the mark and he prescribed something to encouarge my bowels to 'get going' as he thought they had 'slowed down'.

When the diarrohea started he referred me to a gastroenterologist. Luckily for me I work in the NHS (Pathologist) and I am based at the hospital where he works so I was able to be seen fairly quickly.

I had a flexible sigmoidoscopy 2 weeks ago which showed that the rectum was normal but further up there were patches of inflammation. Biopsies were taken. The surgeon who performed the procedure said that it looked like Crohn's disease.

The biopises were looked at by a colleague of mine in Histology, apparently Crohn's disease biopsies commonly show granulomas which mine didn't so they suspected UC.

When I saw my consultant last week he said that because the rectum was spared he thought it probably wasnt UC but he wasn't sure but it didn't matter that much right now as the treatment would be much the same initially.

So here I am 1 week later, not really feeling any better yet.

I am also having real trouble with the foam enemas. The tube provided is around 6-7 cm long but I am so sore currently (I have internal piles which have been around for years and are not very happy with the whole current situation) that I just cannot get it in very far and the foam seems to mostly leak out.

I went to my GP today to try and get something to help with the pile situation and he prescribed an oitment with hydrocortisone and antibiotics (he found a small lump forming around the peri-anum which he thought might be 'something brewing' ) so I hope that things might become easier soon with regard to that.

Well there it all is. Thanks for reading.

I would really appreciate any insight or comments.

Post Edited (RichardUK) : 3/27/2008 5:13:45 AM (GMT-6)


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/27/2008 6:19 AM (GMT -6)   
Hi and welcome. I hate to say it but it sounds like you have CD. Mainly because of what you said about the doc finding a lump around the peri-anum - to me this sounds like it might be a fistula which is more common in Cd then Uc. Also, now this may be wrong so someone correct me if I'm wrong - but if you have no ulceration in the rectal area but patches along the colon wall (we all know that this is indicative of Cd right?) but the biopsy only shows mild damage - could it be that if it is Cd that it is just in a mild form at the moment? But you're right, regardless of which form of IBD it is - we pretty much use the same medications unless you start getting more problems along your digestive track.

Once again, welcome and I'm sorry you had to find us under the circumstance but we are glad you're here :)
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~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
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jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/27/2008 7:35 AM (GMT -6)   
Welcome to HealingWell, Richard. I agree with Red. Because of the sparing of the rectum (where UC starts) and the "something brewing," it does sound more like Crohn's. Be sure not to let anyone talk you into having that "something" removed until you know for sure you don't have Crohn's.

It sounds as if you have a very competent GI, and it's good that he put you on both oral andrectal medications. With your symptoms starting only three months ago, it makes sense that your colon wouldn't be showing a lot of damage. Hopefully the early and aggressive use of 5-ASA's will keep things under control so that you don't get as much damage.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


RichardUK
New Member


Date Joined Mar 2008
Total Posts : 3
   Posted 3/28/2008 4:23 AM (GMT -6)   

 

Thanks for the replies.

I am hoping that  the lump in the peri-anum is only indirectly related to my IBD. I have been so sore around that area for weeks now, even wiping brings tears to my eyes and it is actually quite far out in the peri-anum and I hope that it may just be a minor infection.

Whats really worrying me atm are the rectal meds. Having read a lot of posts on this site it seems that people place a lot of value on these.

I am having great difficulty with these, out of the 7 applications I have made so far, I felt that only 1 was really effective. I just cant seem to get the tube in far enough, no matter how I angle it or push it, it just seems to not want to go anywhere, even with lubricant.

Having said that, when I had the sygmoidoscopy the surgeon was talking me through what was on the screen and he didnt find any patches in the rectum, in fact he had almost reached the limits of that particular procedure before we started to see them.

Presumably rectal meds have a distance limit, and even if I manage to get them in right would they reach that far anyway ?

 


Pooie1981
Regular Member


Date Joined Mar 2008
Total Posts : 274
   Posted 3/28/2008 6:17 AM (GMT -6)   
Sounds to me like you should have a colonoscopy done to find out where the damage actually is and how bad.
Ulcerative Colitis Diagnosed May 2004
400mg Asacol 3 times per day.... increased to 6 400mg per day Mar.11
Entocort 3 pills once a day
Daily Vitamin for Women


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 3/28/2008 7:17 AM (GMT -6)   
Richard, your story sounds very similar to mine. My UC didn't start until further up the colon...my rectal area was spared. My doc was perplexed as well. I did however, absolutely love the rectal meds. They were a life saver for me, at least in the beginning. After awhile they didn't have the same 'uumph' that I needed. The eczema on your legs makes me think you "could" have a fungal condition, which may also be contributing to your GI symptoms. I was diagnosed with UC for 8 years. After finding out UC/CD can have a fungal etiology, I experimented with an antifungal program (what did I have to lose), and my symptoms disappeared. Obviously for me, my UC symptoms were fungal related. I'm wondering if it may be worth a try for you to investigate something like that. Just a thought............

missync
New Member


Date Joined Mar 2008
Total Posts : 1
   Posted 3/28/2008 7:59 AM (GMT -6)   
um...i haven't officially been diagnosed with ulcerative colitis but i have an appointment and that is what i'm thinking i have. you all seem to know so much about this that i have learned a lot already and have some good questions to ask my doctor.
my question for you is: i don't get the abdominal pain but i have had bouts of frequent diarreha. lately (maybe 2 weeks +) i have been having some "leaking" or what i can only discribe at "farting blood". sometimes it just appears but i'm a little freaked out by it because at first i thought maybe it was something to do with my period because i am very irregular but it's not coming from the same area. plus, it sometimes happens and i don't remember passing gas. i'm paranoid about it now because it has stained my clothes a couple times and i obviously don't want anyone to see blood around my butt (if i can help it). any suggestions...does this sound familiar? anything that might help this??? Thanks so much!

princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 3/28/2008 8:17 AM (GMT -6)   
Hi Richard. I am no doctor, but it sounds like Crohn's. Please find a good Gastroenterologist and get a full Colonoscopy. The patches of inflammation and the small lump really sound like Crohn's. The meds are the same but if it comes down to surgery, it makes a big difference whether it's UC or Crohn's. Also, some medications like Humira are approved for Crohn's and not UC, so it is beneficial to have an exact diagnosis. Sorry you are having such a rough time.

Missync, please get a colonscopy and find out what is going on. I have the same problems as you.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica started 1/17/08

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