Completely at a loss--does anyone have suggestions?

Hi Everyone...

I am completely at the end of my rope. I don't know where to go from here and I will take any suggestions.

I have Crohn's Colitis and have been flaring since May of 09. My main symptoms are lots of diarrhea and blood. I have been on 40mg of pred since then, and have had a HORRIBLE time tapering off. I'm now on 25 mg and cannot get below that. I have tried just about everything (see my signature) but I can't seem to kick this. I started colocort enemas 3 weeks ago and that helped a lot at first, but then I tried to taper my oral steroids down to 22.5, and now it's BLOOD CITY and getting really hard to retain my enemas, so I'm going back up to 25mg today (GRRRR!!!). I am going to call my dr today but I don't know what else to do. It's getting to the point where I have no options left. I am running out of money for prescriptions, I can barely go to work but I have to because I'm so poor, and I have lost so much weight that I cannot afford not to eat. I am 5'6 and 110 lbs. I am planning to eat as little as possible in the next few days and what I will eat will be like applesauce, carnation instant breakfast, potatoes, toast, etc.

I just don't know what else to do. Does anyone have any ideas? My gastro is GREAT but even they seem to be at a loss. I'm so incredibly dejected and ready for some hope.

Have you tried the SCD diet? Reduce eating carbohydrates, eat mostly protein and no-starch veggies. My bleeding stopped almost immediately.
Also read the book "Life without Bread" There is a section on Crohn's that says CD people respond better and faster to this diet mod. than UC people (so I'm jealous being a UC'er). This is not a fad diet, it's backed up by science and doctors.

What you are eating: toast, potatoes is carbs. Switch to more protein and green veggies. When I was at my worst eating chicken, eggs and chicken broth made me better. And eliminating carbs (bread, grains, potatoes) stopped my bleeding and diarrhea.
It can't hurt to try but you need to force yourself to eat more protein when you are feeling ill. Hamburger not hot dogs (too many chemicals).

So sorry you are at your witts end. I think we've all been there. Here is my two cents worth and I have not had my problems very long. Is your cortisone enema a foam enema? Those are easier to retain. Also, have you tried a good, strong probiotic? It won't cure you but often it helps. If you have IBS-D, perhaps they could give you a medication for that. Some antidepressants have a constipating effect and help IBS like paxil. There are websites for medication help like needymeds.com and internetdrugcoupons.com 

If you are having financial problems, tell your doctor and they should help you out with samples as much as possible.

I think we all are different as far as diets go and how it affects our system. For me, I have to avoid roughage such as seeds, nuts, fruits and veggies when flaring. I have to eat the opposite of the SCD diet. I wish that one worked for me! But for me, white toast, and easily digestible things work the best with as little fiber as possible. I avoid caffeine and carbonation too. I feel my best luck has actually been with the VSL #3 probiotic and it is expensive. Others work too, it is just the strongest. I have also found that nexium and other meds for indigestion make my diarrhea worse. I hope you get some answers soon from your doc or that someone's suggestions here help you. Hang in there!

Before going the surgery route, there are a few things I would try (that's not to say that surgery isn't a good option). I would try the scd. It's not a low carb diet, it's a specific carb diet. You can eat honey, fruit etc. Some people do better when they do a low carb version of scd, and there's a lot written about low carb dietary treatments of IBD and many other diseases (ie. "Life Without Bread"). The other thing you might want to look into is a Chinese herbal formula called Yunnan Paiyao or Baiyao. If you go this route, you can order it online, get it from a local chinese pharmacy if there's one near you etc but I'd recommend a DOM consultation with it. You don't need it, you can just try it if you want, it has dosing info on the packet. Look it up on google, it's very widely used to treat wounds, internal bleeding, has been used extensively by the Chinese army and the Vietcong etc. I'm not sure what your comfort zone with non-allopathic treatments are but I'd recommend trying it, it might work for you.
Good luck.

Actually, surgery may not be an option for you. You said you have Crohn's colitis, and I believe surgery is only done for strictures and fistulas for Crohn's patients. Removing your colon would not necessarily be a cure, as Crohn's could reappear anywhere in your GI tract. If you did have surgery, it would be an ileostomy because they don't do pouches for Crohn's - again because the disease usually shows up again in the pouch.

You might also try our Crohn's forum to see if the folks there have additional suggestions. I hope you're able to get relief soon.

Actually, you can order Yunnan Paiyao through amazon.com, it's less than $6 a pack. If it's going to work, it should work within a week, I believe and so it's not on-going treatment. As for SCD, it is difficult to live a "normal" life for sure. My daughter was on it and is still on a similarly restrictive but different diet. Not fun, but we decided we wanted to go down this route. It's a very personal decision. As for dairy, it's low carb (I'm not sure about milk, but cheese, yogurt etc is low carb and quite a few cheeses are allowed on scd). Good luck with whatever you decide.

I wish you all the best with it, please update on how you do!

killcolitis, what is a DOM consultation? I am going to order Yunnan Paiyao too. I'll try anything at this point!

80sChick said...
Hi Everyone...


I am completely at the end of my rope. I don't know where to go from here and I will take any suggestions.



I have Crohn's Colitis and have been flaring since May of 09. My main symptoms are lots of diarrhea and blood. I have been on 40mg of pred since then, and have had a HORRIBLE time tapering off. I'm now on 25 mg and cannot get below that.

I remember not being able to go below 25 mgs. I too was at the end of my rope and would try anything that was not damaging to my body to stop the flare. That's when I did fecal transplantation. I was lucky. It put me in remission. I know it doesn't work for everyone.

Was the probiotic you tried an Acidophilus probiotic? I find that the Acidophilus probiotics work for me. Some of the other ones actually give me diarrhea.

Have you tried probiotic enemas? Taking turmeric and boswella supplements? How about anti-anxiety medication? You must be under a lot of stress not being able to get off the prednisone, and stress only makes the flare worse. I don't usually recommend anti-anxiety medication. But I do feel that they are generally safer than many anti-inflammatories.

I know how you feel about needing to go to work, I too am having money issues right now. But your health is more important. You need to be resting.

I hope you find something soon to end this flare.

you said:
I understand what the SCD is...I guess what I meant more was that it's just SO restrictive. I don't know how anyone follows it strictly. You could never eat out, you couldn't even eat what your family was eating, etc. I am one of the few people who can tolerate dairy, and I eat so much in the way of carbs and milk products. I feel like I would have NO eating options if I tried it.

My response:
I eat out all the time and don't find it restrictive. Eat a burger without the bun. Eat a salad with chicken, shrimp or beef on top.
Not so hard. Skip the bread basket, eat the entree and veg..
I would have given all the money I had to cure my UC but through diet I have found my cure.
If eating out is a big deal you may not have as severe a case as I had. For me leaving the house to eat out was as fearful as much as actually eating out. Driving in a car was stressful. Grocery shopping was filled with worry.
I was glad to find something as simple as not eating carbs made a tremendous difference in my colon and UC.

Best regards for your recovery.

Imagardener2, thanks for your input. I'm glad to hear that it's do-able.

No, eating out is not a huge concern right now--eating, period, is. I just have hope that maybe someday I'll be better enough to eat out, and I am trying to think of the big picture or I get overwhelmed. I understand everything you're saying about being hardly able to leave your house. Each car trip is filled with anxiety for me. Grocery shopping is hard. I live 1 minute from work and I still freak out in the car. I know--I'm totally there. You say in your signature that the SCD didn't work the first time for you...what made you try it again and what did you do differently?