New Member In Need of Support and Advice

[JMB]

Hi All,

I was diagnosed with proctitis in the summer of 2009 after a couple of months of very regular and confusing bloody/mucousy D. I was initially diagnosed with Colitis but last spring my GI doc did a blood test that said it was actually Chron's (but that with proctitis they would present similarly).

Since I was diagnosed it has been quite manageable. Through some research I started taking a tumeric supplement daily which allowed me to only take the Canasa suppository about 1x per week and be able to maintain with no symptoms. If I did have some symptoms (bloody/mucous D) I would take Canasa for a few days and be back to normal. I now realize how lucky I was. 3 weeks ago I had horrific lower abdominal cramps that accompanied very bloody loose D up to 12x per day. I am going on my 3rd week of this and while the cramping stopped after 2 days (and the start of oral prednisone) I am still pooping about 4-8x per day, have lost 10lbs and feel completely weak, lethargic, and unhealthy. I also have that sense of always needing to pee (like a bladder infection) and really having to strain to get it out (which always brings more D.)- Is this normal? Will it go away? I also seem to have a ton of hemorrhoids which have appeared since this most recent flare up. It is hard to tell if the fresh blood is from them or internal bleeding.

My doctor has me on 30mg of oral Predisone as well as nightly Canasa suppositories. I feel like I am never going to get back to "normal" again (pooping one time per day and having energy to live my life and do all the things I can do). Friends keep suggesting I should try gluten free diets. Anyone had any miracle results with this? I have been tested for celiac a few times and am negative on this. I am a vegetarian so hate to think about having to limit my diet even more, but I am starting to really lose my enjoyment of food as this wears on. I haven't really tried isolation diets yet because prior to this most recent flare up, I have been able to eat everything as I always have and never noticed an effect. Do you think once I get through this flare I will be back like that or do you think this is a whole new (nasty) chapter?!

I am also trying some natural treatments- an immune booster which is supposed to work better than colostrum (because I had read someone's success story that their Chron's totally went away when they started taking bovine colustrum), a blood builder (bc I worry about becoming anemic through this), the tumeric which has worked so magically until now, and a multivitamin.

So do I just have to accept this is going to be my lot in life forever? Will I ever get back to months on end without symptoms? Is that unrealistic? My doctor said she wants to do a 2nd colonoscopy based on this last bout to see if it has moved higher into my GI tract (so no longer Proctitis). Ugh.

Any advice/perspective would be much appreciated. I am really glad to have found this forum as it sure is lonely going through this. I am single, hope to have a baby someday (am worried that from some other posts now I would be a high risk pregnancy- on top of the fact that I am 34 already), and so all of this feels like a lot to absorb on my own.

 

[Nica]

Hi! Welcome to the forums.

I know in the middle of a flare up it can seem overwhelming. At some point the flare will calm down and you will start to feel better. I would get the colonoscopy done and see where the disease is at then you and your doctor can come up with a good treatment plan to get you into remission.

For pregnancy, I have seen others on here have gone to talk to a high risk OB about their meds before they started them. So whatever treatment you decide on you can have a baby with.

I hope you start to feel better

 

[crazycanuck]

Hey there and welcome. Im sorry for yoir pain and the suffering but no flares dont have to be the end of your life. A change may be needed to put you back in remission but its always possible. I know my biggest triggers of flares are stressful events and Ive had my flares last a week or 2 and I had one last 8 months but that is very abnormal for me so far as there were a few extremely stressful things happening in that time.

As for the second scope it may be an idea if your okay doing it. I know the prep is god awful and everything but it helps doctors keep track of you and habing a good idea of whats going on and if things are progressing or stable, or hell maybe going away?

The pregnancy I have no advice for, males generally arent so good with that. There is however a pregnancy snd crohns sub forum you may wish to check out?

Anyway goodluck and find some relief soon eh. Welcome to the forums.

 

[peterh88]

Hi JMB, You say you would not want to restrict your diet further as you are a vegetarian. Have you gone to a vegetarian diet in an effort to combat the Crohns? A vegetarian diet is very high in carbohydrates and In my experience the carbohydrates I was consuming is what was making me sick. If I were you I would take the meds that the doctors prescribe and then do some research on alternative treatments especially diet. The medications WILL NOT cure you.
As a side note, when you have the second colonoscopy, get the doc to take some pictures of the affected areas so you have some type of reference of the progression or lets hope regression of your disease. You have every right to believe that you can get better and have a child one day but you have to truly want to get better.

Cheers

Peter:goodluck:

 

[JMB]

Thank you to everyone for your notes. Peter- I have been a vegetarian for 14 years (and diagnosed with Chron's 1.5 years ago). Do you have any specific recommendations regarding alternative treatments you have had success with? As I mentioned, I have been trying various supplements (and had huge success with Tumeric prior to this recent flare up)

 

[crazycanuck]

Sorry one thing thats sort of a blanket stereotype of Crohnies is high fiber things usually arent good, in flare ups especially. This is because of how hard they are to digest and they can also greatly irritate your GI tract in the inflammed areas. If there was a place to start cutting out things you may start there. Others go back to the very very basics of their diets to the 'safe' foods and slowly add things to see if there is an adverse response. Best of luck!

 

[peterh88]

Thank you to everyone for your notes. Peter- I have been a vegetarian for 14 years (and diagnosed with Chron's 1.5 years ago). Do you have any specific recommendations regarding alternative treatments you have had success with? As I mentioned, I have been trying various supplements (and had huge success with Tumeric prior to this recent flare up)

If you have a look at my introduction post in the "Your Story" thread, you will see what I have done to put my crohns into (hopefully) permanent remission/cure. I follow a high fat, high protein and very low carb diet which means you would have to leave your vegetarian diet behind.:frown: