Advice anyone?

[jeffg51]

Hello everyone

Well now it seems I have joined the club. My biopsy has come back with findings of Crohns colitis. Apparently it is mostly in my colon and rectum. I also have erosions in my ilieum but the biopsy there was not conclusive. Anyway I was put on prednisone and lialda last week. Symptoms haven't really changed much. I still have bloody diarrhea 3-5 x a day. I will say that I have more energy and don't feel as fatigued. I also notice that my joint pain is subsiding. How long will it take for the medicine to clear up the bloody BM's? I am on a 40mg taper. Should I start to taper before all symptoms are gone? Am I having a reaction to the lialda? Any advice would be great as I am going to see the GI tomorrow to discuss things. His bedside manner is not the best. I travel a lot for work so I need a Doc who is going to partner with me instead of just pump me full of meds and not explain things to me. Thank you!


Jeff

 

[Ness1993]

Welcome to the forum
I havent been on lialda myself but the medication i was on i was told it would take a couple of weeks before i would notice a difference. Aslong as things arent getting worse then i wouldnt say your having a reaction but take note of what reactions the medication can give so you know what to look out for.
How long are you on 40mg before you taper?
Hopefully i helped in someway

 

[jeffg51]

Supposed to start taper after 1 week which is tomorrow. Taper calls for 5mg a week until off in 2 months. Thanks

 

[Ness1993]

Yes im on prednisolone and in the middle of tapering myself.
Hope you start feelong better soon

 

[2thFairy]

The Lialda may take 2 to 4 weeks before you see improvement, which is why your doc put you on prednisone at the same time. The prednisone acts fast, but is not meant to be used long-term like the Lialda. Definitely follow the taper schedule that your doctor has put you on.

What part of Texas are you in?

 

[jeffg51]

Houston

 

[alyssa519]

My doctor told me it was fine to taper while still having symptoms, but stay in very close contact with your doctor during this time. They decided to extend my 40mg dose another few weeks when I wasn't having much improvement. During my taper, I got very sick again and needed to be hospitalized, so just make sure you are keeping in touch with them and that they know if your symptoms get worse

 

[mama21princess]

It always seems to take my body several weeks to adjust to a new med, and for things to calm down. It is good that you are on the Lialda and prednisone. Lialda by itself would probably not get your inflammation under control.

 

[theOcean]

When you do taper, just make sure your symptoms don't get worse. That's usually a sign you needed to stay on your previous dosage longer. You don't want to get worse again, after all!

 

[jeffg51]

I am also now on rowasa enemas since my disease is located in the lower colon. I have been on them the last 2 nights. I still feel like complete crap but at least the bleeding seems to be subsiding. Man 2 months ago I had no idea about IBD and had no real symptoms. Now It seems I can barely keep my head above water.

 

[theOcean]

Unfortunately that's how it seems to be for a lot of people. Inflammation just kind of sneaks up on you, especially in people who tend to lean asymptomatic. If you find that after being on prednisone for a time that the rowasa and lialda don't seem to be cutting it for you, you can always talk to your GI about looking into immunosuppressants/biologics as well. Rowasa/Lialda just act as anti-inflammatories to treat inflammation that's already there, whereas immunosuppressants/biologics prevent it from happening in the first place, and can also be incredibly effective for treating more severe disease.

 

[Lady Organic]

seems a good news that the bleeding is going down. My disease is in the same location as yours. I have gone through the same medication path as yours when I first got diagnosed and we tried a conservative approach for 2 years. After 2 years of continuous ups and downs, we decided to go on with immuno-suppressive. If your colitis is mild to moderate, there are good chances you will be ok with these current treatments. other conservative medications exists such as sulphasalazine and rectal cortisone foam which are still conservative treatments.

It difficult to have extensive time with a doctor as they are so busy with increasing number of patients, its good that you come here on the forum, you'll find lots of info and support. Your doctor might also have a nurse you can contact when needed.

If you want to try some natural approach, you may want to cut completly gluten, corn and milk products and raffined sugars. Introduce tumeric and more vegetable cooked or raw depending on tolerance in your diet. If you inquire that route, you'll find plenty of info on the web. it can help a lot of people with crohns.

 

[jeffg51]

Man this is kicking my ass. Just got my prednisone dose hiked up to 60mg. Not quite on these meds for 2 weeks. Symptoms are getting worse. Very tired and out of it. Literally 2 months ago I had none of these symptoms. A little blood in the stool every now and then. Since then I have lost 20lbs and have to supplement my diet with Ensure. WTH!

 

[Lady Organic]

60 mg of prednisone should most definately help you very fast, its a intense treatment. twice in my life I had 50 mg rounds when the disease was at its worse. and it helped me within just a few days I felt almost back to normal. take it easy while on this high amount of pred since you may feel in the next weeks in super high energy, like superman so try to relax even if you feel so much energy.

 

[jeffg51]

I am now on remicade. Spent 3 weeks in the hospital. Almost took my colon out. They say I have severe UC not Crohns. Apparently the Prometheus test says so. I am not so sure. Oh I had c-diff to top it all off. Crazy.

 

[ronroush7]

I am sorry for what you are going through.

2

 

[Lady Organic]

im so sorry to ear that. Yeah, its not always easy to pin point which disease it is at the beggining. Some 10-20% cases remain as Indeterminate colitis for a long time. The P-anca and aska test suggest pretty good but they are not at 100% specific. let us know how it goes with remicade,
Do you feel any considerable improuvement already?
best to you.

 

[jeffg51]

Yes Lady Organic I do feel better now than a couple weeks ago. I have had two of the three loading doses of remicade. Diarrhea is subsiding and no blood that I can see. Pain has gone away for the most part. I lost a lot of weight and muscle having spent 3 weeks in the hospital. I am also anemic from all the blood I lost and or inflammation.

My biggest hurdle is fatigue. I am out of the hospital almost 3 weeks and still don't have my energy back. Dr said that will take months. I lost around 45 pds since diagnosis in mid May. I have gained 15 back since I got out of the hospital which is encouraging.

 

[Lady Organic]

yes thats very encouraging! wishing you well and hopefully you'll get your energy asap,
good luck!

 

[Deteoj]

if you're smoking stop, it can help with colitis but it is a definite issue with crohn's. i know two sisters, identical twins, both had crohn's in high school, one quit smoking for whatever reason a long time ago. today the twin that quit has remained disease free while the other twin has faced all the issues that a crohnie will face in their lifetime. nicotine suppresses your immune system.

 

[jeffg51]

if you're smoking stop, it can help with colitis but it is a definite issue with crohn's. i know two sisters, identical twins, both had crohn's in high school, one quit smoking for whatever reason a long time ago. today the twin that quit has remained disease free while the other twin has faced all the issues that a crohnie will face in their lifetime. nicotine suppresses your immune system.

No not smoking. I quit last year. About a month later I started getting my symptoms. Seems to be a pattern with UC. A lot of former smokers get the disease. I of course will not start that back up. Would be foolish.:ybatty:

 

[Lady Organic]

I think I read somewhere you experienced peri-anal abccesses before the colonic symptoms is that right? If so, did the abscesses started before you quit smoking? have you ever had a fistula?

 

[jeffg51]

Yes I experienced 2 peri-anal abscesses last one about 2 yrs ago before I quit smoking. I also get abscesses on my back. I have had 2 removed and 2 more that need to be. I am told all are infected sebaceous cysts. Never had a fistula.

 

[Chica]

Hi, my Crohn's is in the Sigmoid Colon (just beyond the rectum). I first developed 2 deep anal abscesses in 06', after drainage surgery I then had 3 complicated fistulas operated on so had 3 ops on my rectum over 5 months. In 2011 I experienced viral like symptoms & Uveitis & that whole year just didn't feel quite up to my usual fitness. Then in June 12' I had a 4th radical op on my rectum where the original abscess cavity had refilled & 10 weeks after the op I had a full on Crohn's flare with nausea, night sweats, arthritis so bad I couldn't walk & was racing to the loo 15-20 times per day. It took all of this time & crap for me to finally be admitted into hospital & be diagnosed with Crohn's in the Sigmoid colon. I was put straight onto Infliximab / Remicade & was told I was one step away from a bag. I'm on no other meds & I have to say Remicade has worked wonders & put me in remission. I'll never be quite what I was before but I cannot complain. However, I'm a bit of a naturalist & I hate the thought of being on meds, but the risks of not being on it are also bad. As I read through your story, I felt sure you would be put on Remicade & I hope it works as well for you as it does for me. I'd suggest you make sure you rest when you can, even when in remission as the condition is always there in the background, eat well, eat organic, moderate excercise etc. For me, being aware that Crohn's in that part of the body can cause abscesses & fistulas etc in the rectum makes it all the more important to stay on good meds. My rectum has had 4 ops (due to crappy medical intervention 8 years ago) & cannot cope with any more so I hope you & anyone else in this situation can nip it in the bud early & avoid the ops. Good luck : )