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colitisblues
New Member


Date Joined Nov 2008
Total Posts : 5
   Posted 11/3/2008 1:35 PM (GMT -6)   
Hello all.
 
Not sure where to start, I will keep it short. about 3 years ago i got a pionidal sinus at the base of my spine. Had it operated on four times as some of the roots were not removed in the first op. Too cut a long story short in January of this year i had a fistula removed from my colon. I have suffered with D and pain for about two years. I thought and was told this fistula was part of the sinus i had.
 
Anyway in July this year i asked my consultant for a MRI scan as I felt the fistula was back. MRi scan came back as it was. I then was given a colonoscopy And told about 9 weeks ago i have Chronic colitis. The Consultant put me on Mesalazine 800mg 3 times aday. I didn't really ask many questions as it was a bit of a shock.
 
I Went back into hospital 4 weeks ago to have the fistula treated, but it disappeared? I have alot of scaring in my colon. I have Seen my consultant today. I asked more and what colitis i have.
He has told me thats its inbetween ulcerative colitis and chrones. He called it Chronic non specific colitis???
 
I have to keep taking the mesalazine and he has now prescribed me Predfoam enemas. He is also referring me to a Specialist who deals with Colitis and chrones.
 
I am going to start a food diary and see what i can and can't tolerate in foods.
I know it will be a long process.
 
Can anyone help me ? Has anyone heard of Chronic non specific colitis?
I have been looking, but i cannot seem to find anything.
 
Thank you.

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 11/3/2008 2:31 PM (GMT -6)   
Non-specific colitis is a type that has some features of Ulcerative Colitis and some of Crohn's disease, but is confined to the colon. Occasionally it can be difficult to differentiate between the two. If you truly had a fistula, that would suggest Crohn's. On the other hand, if it was related to the pilonidal cyst, it may be completely separate from the colitis.
I invite you to check the UC Resources thread at the top of this forum. It has articles and links to a lot of really good basic information about UC. Also, the Crohn's Colitis Foundation has a good website with information about IBD (UC and Crohn's.)  http://www.ccfa.org/
 
Educating yourself about your condition will help you be a partner in your care. It sounds as if you've been very lucky in the first doctor you saw, as he is referring you on to an expert to help with your diagnosis and care. It's important to remember that IBD is a chronic condition, and it's important to take your medicine even when you're feeling better, so you don't flare anew.
 
We're very glad you found us here at HealingWell. Our UC family will have a lot of suggestions and information to share with you.
 
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.


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 11/3/2008 2:47 PM (GMT -6)   
I'm really sorry to hear about all you've been going through, and then getting dx'ed with colitis/crohn's on top of that. Keep taking your meds as prescribed, and let your doctor know about any changes in how you're feeling. For many of us, it takes some trial and error before we find the medication that is best for us, and unless we keep our doc informed, it can make the process really difficult.

Keeping the food diary is probably the second best thing that you can do for yourself (after taking your meds). I used to think to myself that I could keep track of things in my head just fine, and did for a while. Then one day I started writing things down, and it became evident early on that my brain wasn't as good of an organizer or rememberer as I had previously thought. Having things on paper helped me out in identifying not only foods that weren't good for me, but I also kept track of meds/supplements, and I learned a great deal about what wasn't having any effect.

When you have questions, feel free to post them here at HW. Even if you think it weird or that no one else will understand what you are talking about, you'd be surprised the stuff that gets discussed around here. LOL.
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06
Meds & supplements: Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort, Prednisone, flaxseed oil, L-glutamine.


Gigi1227
Regular Member


Date Joined Aug 2008
Total Posts : 469
   Posted 11/3/2008 3:37 PM (GMT -6)   
Welcome to HW Colitisblues. You have found the right place to learn and to give support and receive support. It's nice to find a place where people truly understand! I am sorry that you have the Chronic colitis. I am w/ beartooth first keep on those meds and second your very smart to keep a food journal.

Hope you feel better soon!

Gigi1227
Diagnosised 8/25/08 GRRR
Started flare mid-May/feeling better but still flaring
 
Canasa 2x a day
Asacol
Multi Enzyme
Mega Probiotic
Psyllium
Fiber Wafer
Nictotine Patch
Fish Oil Pill
Multi Vitamin
B12
 
 


colitisblues
New Member


Date Joined Nov 2008
Total Posts : 5
   Posted 11/3/2008 5:04 PM (GMT -6)   
Thank you for your responses.

I have alot of reading to do on here. I will take a look at the resources at the top and check out the site. Just glad I have found this place.

As for the meds, I will not stop taking them, sometimes i forget to take one. But as its early days I will soon get into the routine I am sure. I have started to carry some in my handbag at all times just in case.

The food diary i am going to start tomorrow. I am also going to look at taking probiotics and a good multi vit.
I have to be careful though as i have a severe allergy to seafood and shellfish.

Anyway. Looking forward to contributing if i can.

Thank you all again.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 11/3/2008 5:44 PM (GMT -6)   
My husband had pionidal sinus once too, but luckily he does not have an IBD....I do though...

Fistulas can go hand in hand with crohn's and it sounds like you more likely have crohn's colitis (as I do) than ulcerative colitis simply because of your complications with fistulas.

One major way for them to tell during a colonoscopy is with UC the entire area will be inflammed, with CD there will be skipped patterns of inflammation (healthy tissues amongst inflammed) and with UC the inflammation remains on the surface of the intestinal lining only, with crohn's it can affect the many layers which can lead to fistulas. Be sure they take a biopsie as those results will even better lead to a positive DX but I'm betting on it being crohn's colitis just from what you've described.

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


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 11/3/2008 6:23 PM (GMT -6)   
Blues,

I have a major seafood/shellfish allergy as well. I get a reaction even if someone cooks fish around me. So far I've been able to take every med that has come my way...that includes fish oils! I was really hesitant before trying fish oil, but no allergic reaction. The first time I tried it, I took one in the morning on a day that I had no responsibilities, just in case there was a bad reaction, but nothing happened. I've avoided Cod liver oils, but I'm just being cautious I guess. Fish oil also didn't help me any, except giving me fishy burps, but others swear by it. I'm trying a flax seed oil omega 3-6-9 pill right now. Be smart though, keep reading every label, and if you aren't sure, avoid it.
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06
Meds & supplements: Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort, Prednisone, flaxseed oil, L-glutamine.


yuckygut
Regular Member


Date Joined Feb 2008
Total Posts : 214
   Posted 11/4/2008 1:48 AM (GMT -6)   
blues, it sound like you are getting started in the right direction, and hopefully with a few more test results, you can have a more definitive answer, good luck

---------------------------------------------------

yuckygut

diagnosed 1998

now off prednisone and colazal

drink 1 Haldi daily

colitisblues
New Member


Date Joined Nov 2008
Total Posts : 5
   Posted 11/4/2008 1:50 AM (GMT -6)   
Pb4.
Thank you. Your post has made alot of sense to me. When I had my colonoscopy( which has been the most painful thing i have experienced!), they did take quite alot of biopsies. My consultant sent me a letter saying my colon looked healthy, so he thought I had just IBS, But when i went to see him, The results were back and most of the inflammation was in the layers of my colon.

So pleased I have found this site. Its nice to know That there is people who know what they are taling about. My consultant is good, and he admitted yesterday, He does not know alot about it. That is why he is referring me. I guess I have been very lucky so far with the medical profession with this.

Just waiting now to see when i get to see this new guy.

Thank you again.

colitisblues
New Member


Date Joined Nov 2008
Total Posts : 5
   Posted 11/4/2008 1:57 AM (GMT -6)   
Brandon.

You sound just like me with your allergy. I really need to get tested for what fish I am allergic too. I do read every label.
I think i will give the fish oil capsules a miss though. The thought of fishy burps puts me off.
I can't stand the smell of fish at all. Yuck!

I have been reading up on flaxseed oil. So I think I will give that a go.

Thanx

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 11/4/2008 2:05 AM (GMT -6)   
colitisblues :)

I hope that whom ever you're being referred to will have a greater understanding of IBD, I know it can get confusing and it's not always easy to DX a patient but it annoys me that there are docs out there that do NOT look for the obvious before they make a DX. So many have been DX with UC only to find out they infact have crohn's instead and it's like being punched in the stomach yet again for those patients I'm sure....the good news (if you can call it that) is the same meds used to treat UC are also used to treat crohn's colitis as well (and your member name doesn't have to change either), not trying to make light of your situation, but if we don't laugh sometimes then we'd cry a lot more, and we don't want that.
 
Here is a link of the 5 sub-types of crohn's (the names of the specific areas crohn's most commonly affects)....
 


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

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