Wishing I had a parasite

[Jane]

Hi all -

This is my story. Since approximately 2006 I have had 2-3 urgent bm every morning and the bm were a little strange. I chalked it up to a change in hormones (getting older, just had my second child) and maybe my coffee was too strong. The bm urgency didn't interfere with my day. After I finished pooping, I could head out for the day!

My brother has Crohn's but I didn't think I had it because I didn't have any of the symptoms he had - joint pain, fever, night sweats, abdominal pain, etc. If anything I assumed I had IBS.

In August 2009 things started getting worse for me. I began having diarrhea and I lost weight. I went to my primary care doc who did some blood work and reassured me, my case didn't sound like crohn's. I hoped I had a parasite that some medicine could simply cure. The blood work came back showing inflammation, but nothing else.

I went to a GI doc who did more blood work and suggested I have a colonoscopy. She reassured me that my case didn't sound like crohn's.

At the time of the colonoscopy the physician taking my health history reassured me that I probably didn't have crohn's. Except for the diarrhea and weight loss I wasn't having any other symptoms. I was older than the typical person diagnosed, etc.

I came out of the anesthesia and was told, "You have crohn's"

My GI Doc said, well hopefully it is a mild case.

Since then I have taken Asacol (which did nothing for me), prednisone (took a while to work, after I tapered off of it my symptoms returned), and Entocort (stopped working even before I tapered off of it).

I am now on Entocort and 6 mp. I have been on Entocort since the end of July and wonder if it is time to taper off of it. I don't see my doctor again until March.

Since the diagnosis I have had abdominal pain in the left hand side under my rib cage. I have had a few episodes of extremely intense abdominal cramping (i.e., pain as bad as pains I had while in labor). I have had a few months where I have lost more weight, have had absolutely no appetite, and have episodes of dry heaving.

My mood ranges from being ok (I'm dealing with this, it isn't the end of the world) to being in a terrible funk. I think: Will my children inherit this disease? will they get it worse? I would love another child but I don't feel healthy enough to conceive and I don't feel healthy enough to care for an infant. How is this disease going to impact me as I get older? I'm 38 yrs old, what will it be like when I am 60, 70yrs? (fingers crossed I'm blessed to live that long. LOL). Why can't the medical community cure this disease? I can talk to friends about my crohn's disease but I cry anytime I see a doctor (GI, OB/GYN, primary care) and talk about my crohn's.

At my last visit to my primary care physician she gave me referrals for a nutritionist and a counselor. I hope to make appointments with both some time in the new year.

A few weeks ago I started eating by the principles of the SCD Diet. I have cut out sugar, grains and starches. It seems to be helping. My abdominal pain is gone. My bm are less frequent. I don't adhere to the diet 100%. I don't make my own yogurt and I eat "illegals" on occasion. My concern is my weight. I weigh 103 and am 5'2". This is 15 pounds lighter than I used to be. According to BMI I am fine, but my primary care doc and OB/GYN have both encouraged me to gain weight. I'm nervous about exercising because I don't want to lose weight.

I believe in western medicine. As I mentioned I am on Entocort and 6 mp. However I am also frustrated with western medicine. The prednisone never worked well for me and the Entocort didn't put me in reimission the first time I tried it. Basically I have not been in reimission since diagnosis.

The SCD diet and 6 mp is my last ditch effort. If these fail I am being encouraged to go on a biologic (Remicaid, etc). If necessary I'll do it. However I am reluctant to go on them right now because 1) I'd like to have another child and I'd prefer not to be pregnant while on a biologic. 2) If I do get pregnant I'd love for the pregnancy to keep things calm for 9 months. 3) I'd like to hold out as long as I can because it seems like Remicaid and other biologics sometimes fail after people use them for a while. If I try Remicaid and it works for a while but then fails, then what will my options be?

I really wish there was a cure for this disease. I still wish I had a parasite and the doctor could give me a little blue pill to resolve my symptoms.

I have enjoyed reading posts on this forum. It is nice to know that others share my frustrations, have a sense of humor, and are trying various things to keeping healthy.

Best of luck to you all!

 

[Cat-a-Tonic]

Hi Jane, welcome to the forum. I also cry whenever I go to the doctor - I cry at the drop of a hat when I'm in a flare. I think heightened emotions is considered a symptom.

As far as gaining weight, have you tried nutritional drinks like Ensure or Boost? They have a good amount of calories, plus vitamins and some varieties have things like extra protien. I have had a hard time gaining weight too (I lost about 20 lbs over the last year, and like you I was pretty thin to begin with), so I try to have at least one Ensure every day for extra calories.

 

[littlemissh]

Hello Jane,
I was on liquid only diet but now adding some solids back in and IBD dietician recommends staying on some supplement drinks until my weight improves...long way to go with that. My favourites are resource drinks.300 calories per carton- less sugar than fortijuice which is common in uk as steroids have made me pre-diabetic...so have to be on low sugar diet (This is a bit of a nightmare when trying to put weight on!)

I hope you continue to improve and that in itself will make you feel less emotional I am sure. I reckon uncertainty/not being in control is the worst thing, not knowing if something will work.
Once you feel better on something then that uncertainty will diminish hopefully and you will feel more in control.

 

[Queastor]

Because I'm the amazing ancient roman official

:welcome:

I wrote a reply and now I have to re-write it because I took to long *fumes*

Ok..

Why can't the medical community cure this disease?

If your following the SCD book then it's because doctors can't force people to follow a certain diet. I can't count the number of times I've missed out on pizza this year.

Remember the basic Idea of the SCD diet is that you starve out the bacteria that caused an imbalance in your gut in order to restore balance by eating foods that digest quickly and don't reach your lower digestional tract.

I've followed the SCD religiously since Nov. 2009.

My Colonoscopy at 4 months was very encouraging, the skin was healthy and my 1 ulcer was obviously healing. I still felt fatigued though oddly. But anyway.

You need to start eating lentils, quiche, and banana bread.
You need almond flour for the last two.
honeyvillegrain is one option for mail order. Just type it in google.
You also need yogurt because it's amazing and i'd totally still make it if i didn't have chrones i just wouldn't leave it sit for 24 hours. (I'd leave it to sit for the normal 4)
This is the maker to use. (what I have)
amazon.com/Yogourmet-104-Electric-Yogurt-Maker/dp/B000N25AGO

Good luck.
Oh and I did manage to gain weight on this diet. 135 pounds after averaging 130 for five years. I was 125-127ish before going on diet.

And erm stress has a HUGE effect as well so try not to stress out too much.

Not that that helps :ysmile:

From what I've read for the SCD to truly work you have to be super anal about it. (Like I am.) If your still drinking milk or eating ice cream...stop.

remember you can have cheeses though. Specifically colby jack, chedder and colby are what I eat. but remember to buy the block because the shredded cheeses use small amounts of starches to keep the cheese from sticking together.(Yeah I'm that anal)

Well ultimately it's up to you what you do and SCD doesn't work for everyone (I think I read 80% of people who follow it completely) but at any rate it's effective for an awfully large number of us when followed..completely even if not 80%. So since your trying it anyway you might as well go balls against the wall out.