Brand new here and to Crohn's

[Nancye50]

Hello!
I was recently hospitalized for a tiny bowel perforation from what looks to be Crohn's.
My main ongoing symptoms have been sudden, severe cramps once or twice per day. I've also had aches in my ribs and back which might just be heartburn.
I had a CT scan for food poisoning in 2006 which showed some inflammation but didn't develop symptoms.
I did the Advocare cleanse in early January and actually felt great overall except for continued cramps. I started the vitamin phase but we went on vacation so I didn't follow through with that part.
So I feel lucky, especially reading what some do you deal with and think its awesome that you're here contributing and helping others.
My main emotional issue right now is dealing with the stuff people are saying to me about how awful it is and what the steroids are going to do to me and how they have this friend that can't leave the house...and what can I eat. And so on.
My first GI doc appt is in a week and I'm looking forward to some guidance from him but am glad to have found this resource!

 

[NatashaChampion]

Hi Nancy, sorry to here about everything you have been through. I have recently been diagnosed with Crohn's as well in January and was put straight on to a high dose of steroids along with a range of other medication.
To say I have had a great time on the steroids would be a lie but apart from one day at home due to joint pain, I have been able to get on with my day to day life relatively normally!
For me, the first two week I was on them were challenging but im now into my 4th week and I am definitely noticing the difference such as reduced abdominal pain and not running to the loo all the time which is great!
I did initially have bad joint pain on it however that has settled down quite a bit and I think that my increase in calcium has really helped with that.
Feeling tired seems to be very common on steroids! I have found that sometimes I just have to stop and sit down for half hour and close my eyes which seems to help a lot and enables me to carry on with my day.

I have also got my first appointment with my consultant next week and have a range of questions i cant wait to ask either but I hope i have been of some help to you!
Just remember to think of yourself first and if you need to have a break, take a break x

 

[pink&green]

Hello Nancy and :welcome: there is lots of support and advice on here if you have a question don't be afraid to ask. Please keep us posted on your first GI visit.

 

[valleysangel92]

Hello, welcome to the forum

Im sorry to hear of your recent troubles, have you been given an official diagnosis of crohns or has it just been mentioned as a possibility so far?

I know it can be difficult dealing with what other people say, I very often get the 'thats so awful' response, and if I feel I can, I usually remind them that its not a helpful thing to hear, and if they don't have anything positive to say then maybe they shouldn't say anything. You can try to educate people by showing them the forum or online information, or even bring them along to appointments, but many will never come close to understanding what crohns is really like, how individual it is, how debilitating it can be emotionally as well as physically and how daunting it all can be.

That being said, crohns is very different from person to person and thats what makes it so tricky to diagnose and manage at times, if they know someone who can't leave the house then that person may have complications, confidence issues, severe pain etc and it is not always a direct result of the crohns itself. With good management, people with crohns can and do lead happy, fulfilled lives, even if they aren't exactly the way it was originally planned out.

Steroids can be a daunting prospect, but used correctly they can quickly reduce symptoms and trigger remission, they are best used at high doses for short amounts of time to bring a flare under control. While they do have a long list of side effects, many find that these are far better than the symptoms of crohns itself, and if things are unmanageable you can speak to your doctor about reducing the dose or even changing medications (never just come off steroids on your own though, the dose must be carefully reduced). The risks of under treated crohns are often far worse than the risks of the potential side effects of the medications.

 

[Nancye50]

Thanks so much for your responses.

I was on iv steroids for three days in the hospital and now 5 days at 60mg at home. Is Monday too soon to ask for a first step down taper?

I'm trying to read up on the different diets without driving myself crazy. I can't start anything right now anyway.

My appt Thursday is squeezed in between his procedures so I'm trying to prepare for a quick chat.

The CT looked like Crohns and I'm taking Pentasa. He said a colonoscopy would confirm a diagnosis but I can't do that till fully healed from the perforation.

 

[valleysangel92]

Your doctor is best placed to tell you when it's ok to start a taper, but I don't see why you can't begin to taper soon as long as you do it slowly, maybe staying on a lower dose for a little while. Don't do anything without checking with your doctor though.

Diets are very different for everyone, what works for one doesn't always work for others so you need to be prepared for trial and error . For some people simply the act of eating anything can seem to make symptoms worse.

It might help you to make a list of questions and things that you want to make sure are covered, this can speed things up when rushed for time and it can make it easier to be relaxed during the appointment.

It is definitely wise to wait to heal before the colonoscopy as you wouldn't want the risk of making the perforation worse, so that's understandable. Don't hesitate to be vocal if your symptoms get worse in the mean time though.

 

[Nancye50]

Thank you! I'm definitely checking with the dr Mon morning about a taper. He'd wanted to see me mon but couldn't get me in till Thurs.

 

[Nancye50]

Just reading through the forums, I see people talk about bowel obstructions and not much about perforations. I'm wondering why? Do perforations not happen as often? Are they a bigger deal or less severe?

 

[durwardian]

I have only had perforations and never been constipated, or had any obstruction. The swelling makes it hard to go sometimes, or the meds make one hard stool in front of liquid lava.
My perforations have been much less with the addition of bone broth and plain gelatin to my diet. I also bumped the Omega-3's way up.

 

[afidz]

Perforations are very common, there just may not be people talking about them as much right now on here.
Everything I was going to say Valleysangel has already addressed (very well if I might add)
The only other thing I was going to say was about your back and rib pain. Do you get any other joint pain or have a history of arthritis?
My ribs and spine get very inflamed, although the exact cause has not been determined yet, it is suspected that it is because of Arthritis in my spine that makes my ribs swell. If you can get a referral to a good rheumatologist (I spelled that wrong, sorry) they might be able to help you with that pain and finding the exact cause of it.
Also, make a list of questions you have for the GI. If they can't answer them all at that point, then maybe he can email you the answers to the rest later on in the day. It may also be beneficial to bring a buddy to your appointment( someone you are close with and trust), its a lot of info to take in, and having someone there to help you remember what the doctor said is always beneficial.

 

[Nancye50]

Thank you!
I'd be surprised if the rib/back pain is arthritis. It comes on, moves around, makes me extremely uncomfortable and leaves. I thought it was heartburn. Maybe it actually is, I don't know. I've felt it start to come on before taking the protonix in the morning. Either way, it's probably a piece of the puzzle.

I'm starting to feel like getting Crohn's has given me Crohn's. I didn't have terrible poop issues before and now I only have D. I have to think it's from the Pentasa. Being afraid of further complications is definitely keeping me in line med-wise for now. GI said no taper till visit. I'm such a wreck most of the day. My poor kids

 

[afidz]

The Pentasa may be giving you diarrhea. Pentasa is a mesalimine product, I was on Asacol which is also a mesalimine. Asacol gave me flare like symptoms about a week after I started it like D, cramps and nausea. Make sure you bring it up to your doctor when you see them, you could be experiencing a side effect of it. Its not a serious side effect, so don't worry to much about it, but its still a good idea to bring up to your doctor.

 

[Nancye50]

Thanks afidz. I'm fine with keeping things soft right now but this won't do long term! I'm also on steroids and antibiotics so my guts don't stand a chance right now anyway!