Newbie~need help & advice

[Becca]

Hello all,
After weeks of everything I ate or drank hurting and shooting through my system at the speed of light + ab pain, one ER visit=white blood cell count 26-blood in stool-CAT scan showing "inflammation", a week on the antibiotic ciprofloxacin, one colonoscopy/biopsy Thurs (still waiting on results) which showed a very inflamed "ilium?," a new antibiotic Lialda, and an "upper GI" scheduled for this Thurs to see my small intestine? (along with a "we can't say for sure but you are a classic crohn's patient and you even have the unusual rashes")....I am a wreck.

I can handle pain, but I'm hurting/burning/feeling like my rib cage is crushing something on the right side. When I eat, it hurts worse, even with the low residue diet, I feel wiped out, shakey, and exhausted. I don't want to eat at all. It hurts too much... I have been hitting the bathroom constantly again...

Then, my mom had a heart attack last night... they put her in a hospital that's over an hour away, and I'm scared to go try to see her I feel so sick & wiped out. I'm 33 years old...

I called the GI doc this morning to see if drinking slim fast, or carnation breakfasts would work instead of eating solid food... their big concern was telling me they are scheduling like a month out for appointments and couldn't see me... they said they'd call back but it's 1pm. I called my doctor's office and they said I should go to the ER. So I can get drugged up with painkillers and not be aware of what is going on with my mom? Not happening. Plus would that even come close to solving this problem?

QUESTIONS;
1. Soooo does anybody know if I can just drink a slim fast and call it breakfast lunch and dinner?

2. Should a GI doctor's office be my first call in this situation? Should I be calling my primary (who I've seen 1x in 15 years) ?

3. Should I be asking for pain meds (which I never ever have taken) to power through this pain expecting it to "get better" ?

4. At what point should I be worried... is this pain and illness just normal and something I should become accustomed to?

Thanks for any and all help, you would think with years and years of handling a uveitis/jra kid I'd have a clue, but apparently sick kids & ocular immunology are my specialties.

Becca:grumpy:

 

[HeatherMN]

First--sorry about your mom--hope she is doing well now!!

QUESTIONS;
1. Soooo does anybody know if I can just drink a slim fast and call it breakfast lunch and dinner?
Yup-a liquid diet can really help calm things down, less for the body to deal with. If even a low-res diet isn't helping, a liquid diet may make you feel better.

2. Should a GI doctor's office be my first call in this situation? Should I be calling my primary (who I've seen 1x in 15 years) ?
Yes, unfortunately getting calls back can be difficult.

3. Should I be asking for pain meds (which I never ever have taken) to power through this pain expecting it to "get better" ?
You can get pain meds, it depends on how liberal your GI is feeling with them. Some expect patients to suck it up, and some are very generous.

4. At what point should I be worried... is this pain and illness just normal and something I should become accustomed to
Unfortunately, it can be a normal part of your life now (sucks huh?) but, it could also be an indication of something more serious. Right side pain that radiates towards the back can be a sign of gallbladder issues. I had stones and would have massive pain with them, it would come and go. I finally had it removed a few years ago. Could also be a sign of an obstruction, and *that* would warrant a trip to the ER.
Good luck! It's ok to be grumpy, I think we all are

 

[Jerman]

Hi Becca and welcome to the forum. I am sorry that you are in such pain and discomfort. I would definitely advise you to get an appt. with a GI if you are not able to be seen in an emergency room to get the care that you need. One of the things many of us have learned the hard way is that these conditions can be very different in the way that they manifest in each person.

I would not suggest a slim fast as i believe they can encourage the need to use a bathroom, which is likely not what you need at this point. The pain thing with these conditions is very tricky, as it may not be affected by pain medication- you really need to find a knowledgeable doc ASAP.

I am glad that you found this forum as it's members are very supportive and experienced in terms of similar conditions and the level of frustration and pain that you may be going through. Good Luck with finding physical help really soon. I hope that you find this place as helpful as I have.

 

[Jennifer]

Hi Becca and welcome to the forum!

It does sound like classic Crohns symptoms but I'm not a doctor and its best to let your GI diagnose that. Seeing your GP won't do much of anything. At most they can suggest things like what to eat or drink and help with pain management but they aren't an expert hence them practicing general medicine and sometimes they suggest things that you shouldn't be taking because they don't know enough about the illness that you may or may not have. But who knows, your GP may be different. No harm in leaving a message and asking their opinion on what to do.

A good rule of thumb is to drink or eat what you think you can tolerate. Having some nutrients is better than none so if you can tolerate something like Ensure (I've never seen anyone suggest Slim Fast on here) then its a good idea to drink it in general. It can replace a meal. Some people do benefit from gut rest (liquid diet of broth, jello, juice, tea etc) but I'm not going to outright say that you should do this. It can help with the pain. I was on a liquid diet for a month once before but I also had an IV in my arm at the time and in a hospital with supervision. I know some people on this forum talked about doing liquid diets for that amount of time outside of a hospital with no IV but to me it sounds a little dangerous. If you do decide to do it then be sure to drink often and notify your GI that you're doing it.

All the ER is going to do is give you fluids and nutrients via IV and help you with pain management. The ER can only give about 15 days worth of pain meds and then you're supposed to see your GP or GI for more pain management options.

I'm 28 and very close to my mom and if something happened to her I'd want to be there as well. You could try something like Imodium for frequency for now but its not something you should be taking all the time and I kind of think it may be a bad idea in general if you have blood in your stool (but I don't know, again, I'm not a doctor). Its something I use sometimes when I'm going on trips and wont be around a bathroom for a while. It doesn't work for everyone though.

You feel wiped out, shaky and exhausted because your body is fighting inside constantly and less nutrients doesn't help. You need rest and possibly medication if it is Crohns. I'd suggest calling the GI office again and have them leave an "urgent" message for your GI asking them what to do about pain management (they may suggest Extra Strength Tylenol) and if something like Prednisone might help for now until your next appointment.

Something like extra strength Tylenol my help for now. All its going to do is mask the pain but its not actually getting better. But it may be enough to help you visit your mom at least.

Pain during a flare is common. Some people have pain that causes them to be completely bedridden and some people only have a little pain when they eat or no pain at all. Fully controlling the pain comes from properly treating the problem like using medication like Prednisone to bring down the inflammation or other medications. Yes pain is normal but generally means that something is wrong and may need to be treated.

I'm sorry if I wasn't that much help. Hopefully someone else can do better.

 

[Silvermoon]

((((((( Becca )))))) So sorry to hear about your mom. It is tough enough to deal with all the rest of this, but unfortunately, life does not take a time out when we are in a flare....

I very much agree with what everyone else had said, especially the part about Ensure or Boost rather than SlimFast... SlimFast really isn't a great supplement; Carnation is OK, but really Ensure or Boost are a bit better for you. They CAN be used as meal replacements rather than supplements, but it would be good to try little bits of as much other foods as possible.

For kids (and adults) in hospital battling diarrhea, we recommend a BRAT diet: bananas, rice, applesauce and (dry) toast. You don't need to eat a whole lot at once. If you can get two bites down and have to rest for an hour, so be it.

As for the rest, Crabby and Jerman have hit the nail on the head. I hope something works for you.

Sending warm thoughts.....

 

[Becca]

Hi All, thanks for the advice.

I had an upper GI follow through last Thurs. The doc didn't say much, just said there was inflammation in the ilium. When he pressed there with the paddle it hurt, made me shakey and the nausea was severe. When I started on Lialda, the burning in my right side within half an hour of taking the pills was very intense. It is much less now. I'm able to eat mild foods now without intense pain.

I've found that eating one meal a day is enough to keep me from being light headed and tired. And, I only have the digestion pains once a day instead of all day long. This is a huge change from my usual "grazing" habits of lots of small meals a day (not to mention TONS of fiber).

My eyes have been burning a lot since my mysterious "rash" so I've been using allergy eye drops and taking a benedryl when the whites start to puff out of my eye lid. Should go to the eye doctor when things are blurry, but not seeing any floaters...

I figure I'll call the GI for the three month out appt. on Tues, as Mondays the phone never gets answered (they also close from 11:30-1:00 for lunch).

Feeling like a LOL (little old lady)
(o: Becca

 

[Jennifer]

I know that when you're on high doses of Prednisone that its a good idea to get you eyes checked regularly as it can cause swelling which can damage your eyes over time. Its possible that something similar could be happening with any other medication you might be on. If things are blurry, then yes its a good idea to get your eyes checked.

I'm glad that your pain is getting better. Keep us posted.

 

[Becca]

Hi all,
Well, the GI I was seeing says they can get me in at the end of October to address the results of my colonoscopy (Aug 3) small bowel follow thru (Aug 12), for the pain and non-stop diareah "go to the ER."

My friend who works at my primary's office gave me a number for another GI doc. But it appears the process for going to the old office, signing papers, having my records sent over... etc. etc. will take weeks.

Also, when I called the new office to write a list of everything they needed (referal #'s from who etc. etc.) The receptionist was SO rude. She acted like I was a total idiot, said I'd need a new appt. with my primary to discuss & decide if switching GI's would work... She said "all offices are busy, it may take a month to get an appointment here" I am so overtired from being up sick... I started crying, apologized for bothering her and hung up. When I do go to these offices, they seem to have a plethera of elderly patients, brought over with aides from the nursing home. I guess the GI office makes a lot of money having appt after appt with them...but their appt. list is FULL. Perhaps they hope my guts will rot out and they can make some serious money from my insurance....

SO, I'm not bothering with the GI anymore. Or the doctor's offices. DONE. They are not helping, they are hurting by giving partial to no information, sending me for tests that make me sick for days afterward, which so far just say "you have inflammatory disease process."

The lialda seems to be working, but I've gone downhill again. If I eat solid food (even chicken breast, rice, carrots...my body rebels and hurts then expels (o; I'm super run down. (Before I got sick I hand dug an entire patio area, searched a mile of creek for flat rocks for a natural stone patio & hauled them all back. Now I can't unload the laundry without feeling dizzy, nausea, & ab pain. I'm scared to drive because when I feel woozy, I'm like...w h o o ssss hhhhh.

SO, I'm going to try this place .victorac.com it's some sort of "Inate Wellness Program" they do vitamins & nutrician. I guess when I run out of anti-biotics I run out. I'm going to try taking some multi-vitamins, b12, magnesium...

At this point, I'll take whatever supplements are out there. If someone says to eat my daughter's rabbit's little round turdies, I'll eat them too. Has anyone here tried this tact; the supplements not the bunny balls?

Back to burnin' in the belly
Becca

 

[Becca]

....My eyes are burning & driving me nuts, thinking maybe MAYBE mild iritis. Oddly enough, my daughter has had aggressive uveitis for 6 years... and iritis here and there with it. We drove 7 hrs to take her to a specialist in Boston, Dr. Foster. She is finally in remission, after a vitrectomy, yag treatment for plars planitis, lens implant for cataract, and an ahmed shunt for gloucoma.... I used to wear two watches with timers... to track her meds. We had pred anywhere from hourly to twice a day. Cosopt, lotomax, alphagan... meds to make her pee, pills to make up for those meds... Methotrexate, Imuran, Cellcept....

It's blowing my mind that when I was healthy I could manage her care, magnificently actually, the doctor in Boston complimented us regularly and wished other parents were as into their child's care as we were....

Yet here I am deciding denial is best for me, lol. I would die for a vodka tonic right now. lol.

Becca

 

[Jennifer]

I'm worried about you Becca. I know it doesn't seem like you have the best GI or GP but it sounds to me like you still need treatment and I don't suggest giving up now. There are many of us who have to wait 3 months+ to be seen and its hard to get an earlier appointment but it can be done if its an emergency, you just have to keep calling and calling but if your life/well being may be in danger, then you need to go to the ER no matter what. Please don't give up now. Good luck.

 

[Guest]

hi Becca... firstly i hope your mum is doing better now.

i've just read through this thread for the first time - sorry i missed it before now!

i understand your dismay at the situation re seeing a GI, but i would urge you not to make the decision to stop trying... whether it's Crohn's or not, at the moment you really need to be under the care of a professional, and an appointment at any time in the future is better than none at all.... you also have the A&E departments - use them if you think things are getting worse, or you're not able to cope any more.

regarding diet etc... i understand the logic behind eating once a day to limit the discomfort & pain to once a day - believe me, i did the same thing when i was a teenager and at my worst Crohn's-wise... in fact my logic took me further - it hurt when i ate therefore i stopped eating. wasn't long before i was classed as anorexic and my poor body was barely functioning....

this is not a good system to live by long term... our guts are programmed to expect food at certain intervals, whether we're grazers or have 3 meals a day - and if you don't eat, the acids which are there to break down food can attack your stomach and intestinal lining if you continue to put hardly anything in your stomach. i would advise you to keep off things like Slim-fast, as they contain a load of additives you don't need including bulking agents - just the wrong thing for you right now. instead, go for nutritional supplement drinks like Ensure, and try to have at least half a glass 3 times a day... if you can stomach very soft foods like mashed potato, scrambled eggs, strained soup, then all the better. i would keep off all veg, including carrots, no matter how soft they're cooked, because they need more digestion than liquids etc..

also, think about the hydration aspect - a lot of us can get dehydrated without even reaslising it, especially if we have diarrhea... your dizziness and weakness may well be connected to this. you can buy rehydration powders over the counter (Dioralyte, Electrolate etc) and i would suggest you try at least one glassful a day & see if it perks you up.

good luck honey - please don't give up seeking help, you deserve it as much as anyone!