I'm new here, after some opinion on a few things?

Hey everyone, a quick back story on my UC, I started getting symptoms when I was 14, no one believed me my GI doctor at the time thought I was making it all up in my head and even had the nerve to accuse me of attention seeking. Because I was ignored for so long I figured my issues were normal and nothing to worry about, I had severe bleeding, cramps, pain, joint pain, fatigue and severe constipation.

As a consequence I went over 10 years without any treatment, at age 28 I had gotten so bad that I could not move or function, I was up every hour or so being sick, lots of bleeding and pain... I went to a new GI who did a colonoscopy and swiftly diagnosed me with UC and started me on a hefty course of Prednisone and Salofalk.

It's been three years, I'm now 30, and after almost 10 months of remission after the initial diagnosis and that dreadful experience, I'm having another flare up. Old demons got the better of me (I also suffer from depression/anxiety and very low self esteem) and I also have a terrible reaction to anesthetic and I always wake up mid surgery, last colonoscopy I was awake the entire time before anyone noticed and to be honest that was terribly traumatizing.

My GI wants to do another colonoscopy, but I'm terrified of the whole experience. I've asked him these questions below but I want other peoples opinions...

My questions are:

What are the benefits of a colonoscopy once you know you have the disease? Is it just to see how far it has progressed, if at all? Can't the pill camera thing be used instead? My doc says no...

I have now been on Salofalk for years, recently discovered it is suppressing my immune system, I was always told it was just an anti-inflammatory drug so feel like he's lied to me all these years. I don't want to take it any more because I keep getting head colds and I feel like crap all the time. Is there any way to live my life without immunosupressants? Doc says no again.

I take Prednisone for flare ups, usually both oral and in enema form, it works fairly well, but I'm concerned about my bone health with all this pred, does anyone here take calcium/vit D/vit K supplements alongside their pred and if I start, can it cause any issues or is it safe? Doc says its unnecessary.

I'm considering trying LGlutamine, I've read the forum on other peoples experiences with this, I've read a lot of people saying it did nothing for them, is there anyone out there that has had success with this supplement and what sort of dosage?

Lastly, is it dangerous to take all these things together? I'm feeling like a bit of a walking chemist. So, I'm currently taking (and/or thinking of taking):

Prednisone
Salofalk
Flaxseed oil
LGlutamine (thinking of starting)
Calcium/VitD/VitK/Magnesium (thinking of starting)

I want to stop Salofalk and once I have my flare under control I can stop pred.... But am worried that I'll never be able to get off Salofalk...

Thoughts and opinions from anyone are greatly appreciated! And many apologies for the huge post, I had no idea it was going to get this long... Sorry!

Ok... my doctor told me that it did... I think its time for a new doctor

I'm afraid I didn't misinterpret my doctor, I was so confused when he told me this information, which is why I'm here. I called to double check with him and he said the same thing again.

I live in a small country town, we certainly don't have the best resources for health care. He's the same person who told me that I don't need to take calcium, I'm now on my 3rd course of pred in 2 years and the only reason I came across information on bone density issues with pred is because I was researching supplements to help UC sufferers, same way I learned about LGlutamine.

I won't stop taking the salofalk in this case, the way he spoke of it made it sound like it was the drug that was being harmful which is why I was determined to stop it.

Thank you for the information, I really appreciate it

Hi, I'm sorry you are having such a rough time with things. I'd hunt up a new doc if I was you if at all possible.

The 5ASAs are the most "friendly" drugs generally that UCers take. Some people have side effects, sure, but overall they are tolerated well.

As far as pred...I'm on my first course (and probably my only...it will either help or not)...I've found some potassium helps...I don't take it in pill form...just eat an extra banana...if that doesn't upset your stomach. I also alternate between taking a calcium supplement and drinking an extra glass of milk. Oh...and Vitamin D3 (make sure it's D3, not 2).

Welcome to our forum. Best place for info ever!

Hiya :)

1. I'm not trying to frighten you, but UC sufferers need regular colonoscopies to look for colon cancer. We are at a higher risk of colon cancer than normal people. I've never heard of a pill camera, but during a colonoscopy they take biopsies, which from what I understand are done by scraping cells off the inside of your colon.

2. I live in england, so things are a bit different here. I have only tried immunosupressants once (Azathioprine), in hospital, I vomited for 24 hours so they took me off it.

3. I am on mesalazine for prevention and steroids when I am ill. I am always given calcium tablets when I take steroids, the doctors here are always very concerned about osteoporosis etc. As far as I know the calcium is very safe, I've never been warned about side effects as I have been with other medicines.

4. I've never taken it, sorry.

5. This all sounds fine to me, I have been put on several medications at once, and never had any problems. The first time I was in hospital I was taking:
1. Asacol (Mesalazine)
2. Cortisone intravenously, then changed to Prednisolone orally.
3. Calcium tablets
4. Iron pills
5. Anti-sickness pills
6. Some type of pill to protect my stomach lining
7. The contraceptive pill
8. Hayfever pills
9. Hayfever nasal spray
10. Injections into my stomach to prevent blood clots
And they're only the ones I can remember, there might have been more. Obviously I can't remember all the drug names, as it was in 2002. The second time I was in hospital was in 2010, I was taking all the above, and tried on Azathioprine aswell (although I had to stop that one due to violent vomiting).

As long as your doctor knows what they are doing, you can trust them to check your medications and to be on the lookout for any clashes. However, from reading your post, I definitely think you need a new doctor. Trust your instincts, you can tell straight away when you find a good doctor who knows their stuff.

DO NOT stop taking Salofalk! I have just googled it, it is Mesalazine. You need to take this for the rest of your life to prevent flare-ups. It does not matter how perfect you might feel, you MUST take it or you will get ill again. If you don't get on well with it, you can try another type of Mesalazine, for example, I tried Mezavant, was very poorly, and went back to Asacol, which I get on best with.

You most likely get colds and feel like crap all the time because you have been very ill. It took me about a year and a half to get back to full strength after my first flare-up (and I was only 22 at the time).

You can stop your steroids once you have recovered, however you will need to do it by cutting down, very slowly. Your doctor will tell you when to do this, and by how much. Again, if you come off steroids too soon, you will get ill again.

Ulcerative colitis is far more dangerous than the medications you are taking. You need to stop it in it's tracks, and get it under control. To be honest I'm amazed you survived after 10 years with no treatment!

Good luck!

Post Edited (Dizzy2002) : 1/18/2015 2:32:05 PM (GMT-7)

In response to your anesthesia concerns, some GI docs provide their own sedation via a GI RN and other facilities/GI docs utilize anesthesia providers, a certified registered nurse anesthetist or anesthesiologist. If you receive sedation from the first scenario, it is more of a "conscious sedation" where you may remember a portion of the procedure and are able to communicate with the staff. If you receive sedation from an anesthesia team, it is a deeper sedation (sometimes called "twilight" sedation or MAC anesthesia) utilizing drugs that are reserved for anesthesia providers to use. The second scenario provides less likelihood of being aware of the procedure or remembering portions of the procedure. I hope this is helpful to you. I don't know where you live...this is the model in the US.

It's really important that you get routine colonoscopies now that you've had UC more than 8-10 years.

I'm currently on a prednisone taper and am taking calcium supplements for bone health. They also discharged me on bactrim for PCP prophylaxis (pneumonia) since I am also on remicade. We are a complex group of patients so it's great that you are educating yourself.