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Crohn's Disease
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Posted 1/17/2008 3:49 PM (GMT 0)
I am so not sure what to eat. I do feel a little better than yesterday. No BMs today. Not much urine output either, but I never have been one to pee much. I have these bad cramps down low in my groin/pelvic area. I have had them for months, but now they seem to get worse. I am just so weak & tired.....

I know I am going to ask about bloodwork Tuesday. I could be anemic, don't know. I still have been eating meat daily, so I thought I would be okay in that regard. I thought my sugar was low yesterday, not that I was dehydrated, but what do I know? I am so confused. Yes, I am on antibiotics now (Levaquin). Where would I find a probiotic? Health food stores? Most pills don't digest with me, they just show up in my stool. I am curious to see if the antibiotic gets digested or not.

They were going to give me a mono test yesterday at urgent care, but it never happened. I don't think I have mono anyway. Just ill. I didn't even think I was dehydrated.... But I said sure on the IV, it couldn't hurt & maybe it would help. She said she was going to use a small needle, she was afraid my vein would collapse, which it did even with the small needle. So she went to my other arm & used an even smaller needle. I think she felt bad about it, but it wasn't her fault. They gave me some steroids (I think she said it was sorbitol? Does that sound right?) and some anti-nausea that started with an F in my IV. It made me feel very weird. Anyway, I went home & slept & slept. I was surprised I had strep throat. It was sore the other day, but not that bad & it went away, so I didn't think any more of it.

Here's the thing, he said no juice. I have been mixing my vitamins with juice. What do I do now? I have no idea what to eat at all... I know, bland, but I still have to get vitamins & such... and I don't want to lose any more weight, I lost another 3 lbs yesterday. sad Any help or suggestions on diet would be soooooo greatly appreciated. Everything I eat makes me hurt or feel like I have to puke. I am still scared, but trying not to let it show. Still very shaky & uncoordinated.
Posted 1/17/2008 3:52 PM (GMT 0)
Hi,

Sorry to hear about how tough it's been for you. I've just been treated with Remicade after a really tough few months of cramping, rectal bleeding & painful hemorrhoids. After almost two weeks in the hospital, I'm thankfully and luckily doing much better. I'm sure your doctors can tell you much more than I can, but part of doing pretty well now is I'm on a low-fiber diet, and I know that corn is not part of it. You can google "low-fiber diet" and get a fair amount of info. Hopefully it will help, even if a little.

Craig

(C-rosey)

Posted 1/17/2008 4:28 PM (GMT 0)
Ugh. I worry I am getting hemorrhoids too. It hurts down there awful. I find myself holding my urine in sometimes so I don't have to sit down to pee, because every time I do, I feel like I need to poo too. I have always been a constipated person & I am now afraid if I cut out fiber, I will be constipated again. But I am cutting back on it. Can I eat yogurt? And oatmeal? I was told to cut out lactose & spicy foods....
Posted 1/17/2008 8:19 PM (GMT 0)
Well, I started my period back up again. Weird. I guess it was just from the dehydration. Now I am still not urinating & the last time I did (2nd time trying today since 5:30 a.m.) it burned pretty bad & was really dark. Does anyone know if this is normal when you get dehydrated to do have problems with urination? This is all new to me...
Posted 1/18/2008 4:29 AM (GMT 0)
Hi Huckleberry,

Again, I'm really sorry to hear how things are for you. All I can offer is to look up the "low-fiber diet" on the internet. It seems to have worked for me. As to the rest, I can't offer much. Sorry. But maybe the low-fiber diet will help.

Craig

Posted 1/18/2008 11:02 AM (GMT 0)
Well, I looked up low-fiber diet online & found some info, but also found it had a lot of dairy in it & the gastro online said to stay away from it. Actually, I have already been following a low fiber diet as much as I can tell. I have had some meat lately, trying to keep from being anemic. I cut out the juice because the doc at urgent care said it had too much acid in it. So far all I have seen to eat is white bread & plain pasta. How am I going to gain any weight from that? I have lost like 4 or 5 lbs in 2 days. Everything I eat causes pain & bloating & my stomach is so upset all the time. I'm getting scared that this is going to kill me. I now weigh less than I did as a senior in high school...
Posted 1/18/2008 2:39 PM (GMT 0)
Hukleberrie,
I'm sorry you're in so much pain. The fact that your urine is dark probably indicates that you are dehydrated, so you really need to push the fluids more (I know it hurts). You might want to try supplementing your diet with lactose-free supplements such as Boost or Ensure, which pack a lot of calories into one little can. I drink those when I'm losing weight too rapidly or when it hurts to eat solids. If your pain persists while urinating, you should get a urinalysis from your PCP. Simply increasing your fluid intake may relieve that if it's just dehydration.

Hang in there!
Posted 1/18/2008 5:26 PM (GMT 0)

Huckleberrie,

I'm sorry how things are for you.

If you're looking for a top-notch doctor, I can tell you that the staff at Mt. Sinai in New York are probably some of the best in the field. I saw a Dr. Chapman (212 861-2000) for a second opinion (to my doctor's recommendation of Humira or Remicade - I ended up taking Remicade). Dr. Chapman's office is actually separate from Mt. Sinai, and he doesn't take insurance, but other doctors who are within Mt. Sinai do.

Also, if it helps any, I'm 5-11 and have weighed around 180 for years now. But when things got really tough for me over just about 7 weeks (from November through late December), I lost almost 50 pounds. But since being in the hospital and getting high carb/protein/sugar IV fluids known as TPN, and being on the Remicade, and then following the low-fiber diet, I'm putting the weight back on. I realize it doesn't sound like you saw much to eat with that diet. Maybe it was the just web-site you found,  but I've been eating chicken, fish, sliced turkey, some red meat, certain vegetables (zucchini, egg-plant, and mushrooms) white pasta, white rice, and potatoes, and with meals, custards, pound cake, short-bread cookies, sherberts, and non-dairy ice cream.  I don't mean to brag - I realize I'm very lucky, and we're all different.

I hope this helps.

Craig

Posted 1/18/2008 7:15 PM (GMT 0)
OMG! I barely eat anything & it hurts so bad. The osteo today thought that I probably have an ulcer. He said that if it's CD, I can ulcers all along the GI tract even into the mouth. I have been taking ensure & liquid vitamins. (I stopped taking the liquid vitamins in my juice the other day because the doc at urgent care said it was too acidic for my digestive system. But the osteo said it would be okay in very small amounts. He said to just eat tiny portions constantly, like every half hour or so. Peanut butter, toast, pasta, no meat, yogurt in a shake in small amounts is okay, and he said to put egg whites in a shake, too for added protein - since I hate eggs anyway. I also don't like zucchini or eggplant or mushrooms. ick.)

I am in Michigan, and on very limited funds (and no insurance), so going to New York is not an option for me. I am hoping to get referred to some gastro soon. I see my pcp Tuesday & then I will know more.

I am a 5' 8" female who was 170 lbs the end of June. I started on Azulfidine the end of October & started losing weight again. I am down to 122 now. It's so frustrating.

BTW, it isn't burning when I pee as much now. I still don't have much output, but at least no burning. So that's good.

The osteo thinks my rib pain is related to the GI issue. He thinks once I get the GI problem under control, the pain will go away. He could tell I was very frustrated & he tried to make me feel better. He's a nice guy, but he's not my pcp, so he tries to stay out of the gi issue, I think. He said there is no more fat on my body anywhere & my body is metabolizing my muscle & that's why I am so weak.

Thank you all for posting. I still am pretty scared about all of this. I am afraid that something is seriously wrong.... I feel so strange all the time. Not myself. Light headed & all... but it must not be my blood pressure since it was like 126/89 today. That's pretty high for me!

Let me just ask you all.... when do you feel like it's super serious & you need to go to the ER? How sick do you have to be? What are red flags that should point to an ER visit?
Posted 1/18/2008 7:26 PM (GMT 0)
If you feel like you need to be seen in the ER for a Medical Screening Evaluation than you are problably right............your red flag is you have lost a extremely large amount of weight and you cannot eat, so if all other access to medical help is unavailable , go to the ER.

While your there, you should see a framed set of the Patient's Bill of Rights in plain view. You have the right to be sick and to be seen by a professional. 

Let me know if you have issues with ER's, I would just like to track how many have a problem accessing medical care.

Take care. Gentle Hugs

Kitt

 

Posted 1/18/2008 8:24 PM (GMT 0)
Well, I do have an appt. with my pcp on Tuesday.... I should be fine until then, right? I have to go to work Monday. I don't know how I am going to get up & down the stairs.... I don't feel well. I KNOW something is wrong, but does it really warrant an ER visit? Will they turn me away without insurance?
Posted 1/18/2008 10:39 PM (GMT 0)
They won't turn you down without insurance. Deciding whether it's a true emergency is tough. It sounds like you are dehydrated and really need to increase your fluid intake. Sometimes the blood pressure will run a bit high during periods of dehydration because your body has to be perfused more quickly since you are volume-depleted. Anyway, I wouldn't worry about that BP too much, but you really do need to start peeing. That means you need to drink a lot of fluids! What are you drinking this second?
Posted 1/18/2008 11:50 PM (GMT 0)
I drank 2 bottles of water today. I wanted something besides water so I am drinking a little bit of tropicana twister juice. I just needed something that tastes good. I can't be dehydrated, I really only had 2 BMs today & they were really small. Floating. Lots of mucus. I have peed 3 times today, so that should be enough. It's just not that much when I do. I am having this feeling like I have to have a BM, but when I try, nothing happens. So it must just be in my head.
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