In shock and desperate for support/advice

[SufferingInCNY]

Hi all,
So happy to have found this forum. I am 40 yrs old and a mom of three. I come here seeking wise counsel and some shoulders to whine on. I was JUST diagnosed on Friday night (June 17) with Crohns-colitis mild to moderate. My only symptom leading up to this was a week and a half of diarrhea with no other problems. I thought I had a virus! I am in shock and am so confused. It doesn't help that the Gastro doctor spoke to my hubby and I (still groggy from the colonoscopy anesthesia) for a grand total of 2 minutes and then said I'll see you in 3 weeks. 3 WEEKS??!!! Really? I'm supposed to trudge forward for that long with NO guidance whatsoever. He left us with a script for Prednisone (8 weeks - taper off by 5 each week) and Asacol 800mg (2 tabs twice a day). Did not give me a single sheet of literature.

Please help me figure what to do in the next few days, hell.. even for the next few hours.Where do I start?

When will these meds start to kick this diarrhea? This is maddening, both meds have diarrhea listed as a side effect!! How can it possibly stop mine? I have only had one and half days on them so far. Dear Lord... what if they don't work?

You must know that I am a Hodgkins Lymphoma survivor of 9 years. If these initial meds don't work - I will not be going on the meds that very slightly possibly can bring that disease back. ONLY because I feel I might be susceptible with having the history.

How am I supposed to work on Monday when I'm still running to the bathroom?


What should I be eating? What should I not be eating? I have no known food allergies.

What should I drink?
Can I take Mylanta or Pepto if my tummy feels acidic?

Isn't Crohns-colitis actually 2 diseases?

How am I already at stage moderate when I had no previous bouts or symptoms?

Does this disease get progressively worse?

I'm sorry to sound so needy - I'm generally not a needy or whiny person. But I am not afraid to admit when I am scared. ..And I am scared right now.
I have to get through this initial trauma stage and I feel like I'm on A ROLLER COASTER. Part of me is saying.. stay positive you'll get this into remission. But I know that it isn't always the case. I have read some of your stories and my heart breaks for your suffering.

I look forward to everyone's input. Thank you for reading.

Happy Father's Day to all the Dads.

 

[Naddie4589]

welcome to the forum, and i am sorry that you had to find it this way predinisone is the way almost everybody starts their treatment, and though diarhea is a side affect, the pred actually helps it out alot. It calms the inflammation and makes things feel better trust me as for the asacol it did actually give me more diarea but don't let that stop you, try it out. The doctor will most likely put you on an immunesupressant medication such as immuran, or Cyclosporine, to help your immune system stop fighting your body. It sounds like alot to take in but i hope things get better for you very soon and keep us updated. Also i know this is not a medication, but if i have something majorly important that i need to do during the day, i mix starch with lemon in a small cup and drink it, it makes the diarhea stop within 10 minutes, but only use it if you need it again keep us posted and if you have any more questions dont hesitate to ask we are all here to help and there are some wonderful ladies and men here that know a bunch

 

[emmag]

Hi. I am also a new member. I was diagnosed in April after a few bad spells, but have had a couple of flares since then. I have to say, the care I have had has been very good. I have an IBD nurse, who I can call at any time if I have concerns or questions. I wonder if it depends on which country you live in depends on the medication and care you get? I am on 800mg of Asacol (6 tablets a day). Ideally, the doctor wants to half this, but every time I try I flare. I have difficulty in finding things to eat that wont set me off, I am not a good cook and just find myself snacking and have recently lost a quite a lot of weight as just cant be bothered to eat!

Just make sure that you are drinking plenty of fluids, as you will become dehydrated with going to the toilet a lot and take vitamins to keep you healthy. I worry about being at work with the side affects of the disease, but you must talk to your line manager and explain the disease. I found most people to be understanding, especially when you have to take time off. Make a long list of questions to ask your doctor when you go in, so you ask everything you need to.

Also, I would like to know what is normal? How many trips to the toilet? etc... if anyone can help??

Thanks

 

[Lisa]

Hi and welcome - sucks getting a diagnosis pretty much out of the blue! Hopefully you should feel better with the Pred after only a few days - which should give the Asacol time to start kicking in too. I've been on both in the past - done pretty well with the Asacol in times past.....OH - don't be worried if you see what looks like full capsules in the toilet - many times the coating remains, but the meds have exited while in you!

What part of CNY are you in? I guess you could say I'm CNY too...lol.....I use Albany Med for my GI - been very happy with them over there.....

Take a few deep breaths, let the meds start to work, I wouldn't worry too much about the 3 weeks - BUT if you symptoms get any worse I'd be giving the doc a call - and do some internet research on the meds - BUT (yup, again) - remember that all the listed side effects DO NOT affect everyone - pred would give me the munchies and moom face after an extended time (which DOES go away!)...Asacol I never noticed any side effects....

 

[25times]

There is no "normal" course of crohns or colitis. If I were to tell what was normal for me, you would probably be alot more scared than you are now. As crazy as it might sound, I can see alot of people envying you for how mild your disease is. Get it under control NOW before it gets any worse. You are very lucky to be diagnosed after such a short amount of time. For alot of people, it can take months, even years to get an answer. I started having problems off and on when I was 6 years old. I'm 20 now, and I was diagnosed in April of this year. My crohns is quite severe and I experience really horrible symptoms. I go to the bathroom up to 30 times a day sometimes, and my pain is often off the charts. I have most of the systemic symptoms of crohns, like severe joint pain and eye infections. Mouth sores, rashes, and fissures, too. Plus about 20 other things that prevent me from doing ANYTHING. And the treatment plan I am on isn't working. I understand why you are in shock, and so scared, but you are one of the lucky ones. You haven't been suffering for years without an answer. You haven't had the doctors misdiagnose you hundreds of times, while your disease just gets worse and worse until eventually, no medication can help you and they're wheeling you in for surgery.
Read up on the disease as much as you can. In your case, I think preventative measures will be a great help to you. Take the prednisone, and you will most likely get better. I'm not sure how fast because like I said, everyone is different. But I really believe that you "caught" it early, and you can prevent alot of the horrible systemic symptoms and complications. Good luck!

 

[Snookums]

Hello sufferingincny,

Sorry to hear about your recent diagnosis. Its such a shame to hear about how it was all handled too. We all feel extremely scared about having this disease at times but certainly even more so in the beginning. You really could have done with at the least some printed info.

When I first presented at ER with symptoms and then over the course of my 10 day stint had diagnosis, a doc came in and explained as much as he could to me. I still felt as though I didnt know enough and thats something that for me hasnt changed.

The disease presents in so many different ways and you can be affected anywhere from your mouth to your bottom with it. So with such a large area being of concern you can only imagine how different each individual case is. Treatment therefore is completely different from one person to the next too. What will work for some doesnt work for others.

So when it comes to giving out advice even from a docs point of view, there still is a lot of unknowns around this disease. Not that this is any excuse for the behaviour of the doc you saw. My suggestion would be to research as much as you can. knowledge is power. Write down any questions you may have between now and your next appt and dont be afraid to ask them anything. Hopefully you wont be caught out like this again, I know you were groggy at time but next time you will be well armed with questions. Dont leave until you are satisfied with what needs to be cleared up for you.

I hope they can sort out a med that will work for you as soon as possible. That seems to be the common issue really. Finding the right meds to suit you, will mean hopefully a fairly normal life. This disease can get progressively worse or it may not present again for some time. The journey it wishes to take you on is something we all wish we could predict.

Be patient throughout as best you can and listen to your body. If something doesnt seem right and you are having concerns call your doc and ask about straight away.

Im not sure if this has helped you in any way but the forum is the one place where you can ask anything, share experiences, offer advice and more than anything receive some much needed support.

Keep us up to date with your progress and take care

 

[SufferingInCNY]

Thank you

Thank you Naddie, EMMA, SNOOKUMS, SAMANTHA and Pasobluff ..for your gracious notes of support. I had my colonoscopy 2 days ago. I had a great day yesterday. Ate very little - just wheat toast and baloney. Eggs for breakfast. I have been to the bathroom 25 times since 3:30 this morning..it's now 11:30 a.m. Obviously the meds have not kicked in OR they are having an adverse effect. This is scary stuff.

Samantha - you are absolutely right. I am lucky.. it's just hard to wrap my head around it right now with it all being so new. I fear mine will be one of the cases that never goes into remission - I was the same way when I had cancer.
Your journey looks like sheer hell to me. God bless you. I pray you will have relief soon.

Pasobuff - I am in Whitesboro, which is nestled in between Utica and Rome. So about 1 hr and 45 min from you. I have read about Albany Med GI online and it's impressive. Maybe I will come out there for a second opinion. Is there a specialist you would recommend?

 

[Grumbletum]

Hello there, and glad you have found the forum. Yes, a positive diagnosis is a lot to get your heart and mind around and it will take time. Like the others have said, arming yourself with as much information as you can is one way to do that and to take an active part in managing your disease.
My road to diagnosis was a bit longer than yours, tho Crohn's was mentioned as a possibility about 4 months after I started getting sick and I found the forum while surfing for information on how to alleviate the symptoms I was having at the time.
I did get information on the drugs and treatment avenues when I got my diagnosis, but nothing on diet etc. I do think this because there is no set diet for Crohn's/Colitis as trigger foods vary from person to person.
Although you have no known food allergies, it may be that you have developed intolerances to certain foods and that they will aggravate your symptoms, like the D. It's a case of systematically trying to identify what these triggers are and that can take some time. If you head over to the Diet and Fitness sub-forum, there is some great information and advice.
Would it be worth going to your GP and maybe getting a sick note for a few days? It might give you a little breathing space and time to get used to the meds and see if the D will settle a bit.
Hope you'll be feeling better really soon and let us know how you get on.

 

[25times]

Crohns is much easier to get into remission when the inflammation isn't that bad. Since the only thing you're experiencing is diarrhea (albeit, alot of diarrhea) I think you will get into remission no problem. I have severe inflammation, mainly due to not getting a diagnosis for so long. I think the pred will clear you up relatively fast. I've been on steroids for just about a month now, and I've gotten worse. But, like I said, my inflammation is very severe. If you notice any changes is your symptoms, make sure to let your GI know, even if it's just a phone call to his office. If things get much worse, you start experiencing very bad pain, or the diarrhea stops all of a sudden and you don't go for a few days, go to the hospital. One of the worst things about crohns is how uncertain it is. There are basically no answers. Almost anything could happen. And you will never know how the medications will treat you until you take them. It's a terrible disease, but remission is possible for almost everyone. And there are many treatments available. Right now, just keep yourself hydrated and eat only what you can. Do not test yourself with new foods. I would also stay away from alcohol. Other than that, take your pills and follow the doctors advice!

 

[Misty-Eyed]

Hi Suffering, hopefully you shalln't be suffering for much longer!

And please don't worry, Crohn's colitis just means that you have crohn's in your large intestine alone rather than also in your small intestine or both. So you only have the crohn's to contend with!

It must of been a shock though but it's better to get diagnosed sooner rather than later before your symptoms get too bad.

As you are in America, maybe having a look at the Crohn's and colitis foundation website may be useful. It would probably answer a few of your questions from the get go.
Here is the link;
http://www.ccfa.org/info/?LMI=5

Hope you feel better soon

 

[Lisa]

Pasobuff - I am in Whitesboro, which is nestled in between Utica and Rome. So about 1 hr and 45 min from you. I have read about Albany Med GI online and it's impressive. Maybe I will come out there for a second opinion. Is there a specialist you would recommend?

Hey neighbor! anda-wave-t:

I know where Whitesboto is! lol.....

I use Dr Bartholomew at Albany Med, another good doctor (who I usually see during my remicade infusions) is Dr MacDermott - he is the 'specialist' for the remicade program there. I have been going there for years - first as a child (saw Dr Balint, who is older than DIRT and now retired!)....then again when I moved back into the area in 2002 and since then. One of the best things I like is that I actaully get ANSWERS and call-backs from my doctor/office - and if I have an emergency (sudden flare of symptoms for example) I can even sometimes get in the SAME DAY to see someone.....

Oh - for the record, even if things aren't totally under control, you CAN have a pretty normal life!.....I've been a firefighter (volunteer), worked full time/part time, gone to school, had a pretty darned active social life, traveled all over...and most recently have a family and home, along with my horses.....thankfully Remicade has been pretty much a 'miracle drug' for me - hoping it keeps working for years to come!

 

[SufferingInCNY]

You gals rock! THANK YOU SO MUCH FOR THE ENCOURAGING WORDS and the answers to my questions! I appreciate your time and concern.
Feeling better today...meds starting to kick in. Staying home from work for another few days though to rest. Need to regain some strength. Hope everyone else is doing well today.
God bless.
Andrea