New to Forum and very frustrated with my UC

[Jaffa71]

Hi everyone,
I was diagnosed with UC nearly 2 years ago and in this time have never had it under control. I started on Measasal and colifoam enemas which didnt really do much. My measasal was then increased to 4 tablets, 3 times a day, prednisone and salifalk enemas. My symptoms reduced slightly but as soon as I stopped taking the prednisone it all came back. Today my dr was very concerned that I have not improved and put me back on the prednisone along with the measasal and salifalk as well as a new drug called Imuran.
Has anyone had any experience with the Imuran. Im a bit scared to take it as when I did a search it has a high risk of liver disease, kidney disease, blood disorders, and certain types of cancers. I will have to take a blood test every 4 weeks to check on all this.
I am feeling very frustrated that I am doing all that Im told and getting worse not better.

 

[muppet]

Hi Jaffa,

Lots of people on this forum are on Imuran and getting good results from it. There's an Imuran subforum here: http://www.crohnsforum.com/forumdisplay.php?f=64

The side effects sound scary but they occur in only a minority of patients for the most part. The side effects of untreated UC are generally much worse. ASA drugs, which you're on now, can actually make some patients worse. Have you talked to your doctor about the possibility that you're not tolerating them? Switching them for Imuran may give you much better results.

Good luck to you!

 

[Angrybird]

Hello and welcome to the forum

I have been on the Imuran myself and it did a really good job at keeping the tum settled for several months, unfrotunately it did eventually cause some problems in other areas for me but we are all different and I know of others who have done really well on this with no issue. Initially you should be on weekly blood tests and then you eventually go onto monthly, we do have a sub forum dedicated to this med that is worth having a look at to chat with others who are on this: http://www.crohnsforum.com/forumdisplay.php?f=64. With regards to the risks one way my doc has explained things to me is the definite risk of problems with active crohn's tend to much outweigh the potential risks of the med that may never actually happen.

I hope this helps and please keep us updated on how you get on.

AB
xx

 

[Jaffa71]

Thanks for your advice, I will go into the imuran forum and check that out.

 

[David]

Hi there and welcome to the community. I'm sorry to hear you've never been in remission. A few questions if you will:

1. What are your specific symptoms?

2. How were you diagnosed? For example, did they do a colonoscopy and the biopsy results said Ulcerative Colitis or was it some other manner?

3. Did the doctor schedule you for some blood tests to monitor you on the Imuran?

Again, welcome

 

[Jaffa71]

Hi David,
My current symptoms are bleeding even when I pass wind, mucous, urgency, diarrhea, painful bloating, and most times when I go to the toilet it seems to be just a build up of blood and mucous rather than stools.
I was diagnosed 2 years ago when the bleeding and mucous started, before that I had no symptoms other than bloating but thought this was just from IBS which I was diagnosed with in my early 20's. My Dr diagnosed this via a flexible fibreoptic sigmoidoscopy.
I had a colonoscopy about a year ago but it showed that I only had about 6cm of inflamation. Dr then told me it was ulcerative Colitis Proctitis. Not sure if the colonoscopy could have irritated it but not long after I was suffering with my current symptoms and when the dr had a look I had progressed to 23cm of ulcerated inflamation. He put me on a course of prednisone 50mg reducing by 10mg every 5 days and salafalk enemas as well as Measasal 250mg x 12 per day.My symptoms did actually go away about 5 days before finishing the prednisone but as a soon as I stopped taking this it gradually came back to where I am now.
I was advised that I needed to have monthly blood tests with the Imuran but after reading this forum I went to my GP and insisted on weekly blood tests and she agreed to this.

Thankyou for your interest and this forum has really helped me to understand what I am going through.
Kerri

 

[David]

Hi Kerri,

Did the doctor take biopsies with the flex sig? Or did he diagnose upon visual cues? Were biopsies taken when they did the colonoscopy?

Have they ever done an endoscopy (scope down through your mouth)?

Is your entire abdomen bloated or does it seem to be more of a specific area? And do you have any abdominal pain in any specific areas that might not be related to the bloating?

Good job on getting more regular blood tests. Way to advocate for yourself!
:highfive:
Frequency of testing can decrease the longer you're on the Imuran, but I always cringe when someone first starts it and says they're being monitored monthly or at longer intervals.

 

[Jaffa71]

Hi David,
Im not sure if any biopsies were taken for either the flex sig or the colonoscopy. I am seeing my regular GP next week so I will ask her if any biopsy copies were sent to her. Do you think that I could have something other than UC?

I had an endoscopy at the same time as my colonospcopy and they found that I had reflux and am taking Somac now for that.
Yes my entire abdomen bloats. It generally happens in the afternoons, maybe from the combinations of food that I have eaten that day?????
I have been monitering food that I eat and have noticed a slight improvement. The pain from my bloating feels like it is just from my stomach stretching so much. My stomach expands by about 10cm. I am only small so it is a very significant amount and it looks like Im very pregnant.
I will definately have a good chat to my GP next week.

 

[Catherine]

Hi

My daughter has been taking aza since the beginning February, she doesnot appear to have any side effects and her area of inflammation is much reduced.

Regular blood tests are key with this med.

 

[David]

Kerri,

I do indeed think you have something else. Now, you may very well just have the Ulcerative Proctitis, but the abdominal bloating of 10cm doesn't make much sense in that case. There are a variety of possibilities here but I think the key is finding what is causing your severe bloating. It could be dietary, it could be small intestine bacterial overgrowth, it could be Celiac, your UC may actually be Crohn's; it could be a lot of things. But I think it's very important that you push them to determine what is causing it.

Did the bloating start after you began taking the pantoprazole (Somac) or was it there before that?

When you were on the prednisone, did the bloating go away?

Definitely find out if your UC was diagnosed via biopsy or not.