Short story of my travel with Crohns

[Debbielouisa]

Hi,
2 years ago i was rushed in hospital with a kidney infection... after several test etc.. on a ct scan they found something on my terminal ileum and suspected crohns.. after more tests and colonoscopy .. they determined it was Crohns... then they decided to tell me they suspect i had it this for over 10 years, as i have been in and out of hospital, kept in hospital on morphine and god knows what.... as soon as i wasnt in pain anymore they kept sending me home and never looked into why i was in agony with stomach pains, i had my appendix removed and they said this was also to do with the crohns???
anyway... finally got diagnosed and put on medication. prednisolone sort of worked, rushed in a couple month later had budesonide.. didnt really work... so had to up the dose of the prednisolone.. this causing me to become extremly mentally unstable... i tried to split with my partner about 5 times in one day.. i planned to kill myself.. i would paint the house at like 2am due to not sleeping and hyper, i would have fits of laughter followed by total break down crying seconds later... i was a mess but it had helped my stomach, not sure what was worse(especially as im 28 with an 11 year old daughter). they then tried me on Pentasa.. didn’t work.. then tried azathioprine..it started to attach my pancreas and made my again seriously ill... so they then said ill put you back on pentasa just so your on some tablets...so didn’t take them just changed my diet completely.. an 6 month later i have another flair up.... awaiting another scan to see if it has spread.. lost 22lb since my last hospital app, had a sigmoidoscopy and said i have fistula tears. and that’s me.....
im still new to crohns so don’t really know much about any of the above.. just my experience, ps sorry for fast typing and shocking spelling mistakes
:yrolleyes:
any info help advise would be very much appreciated....

 

[SarahBear]

Hi! Welcome

Before they removed your appendix, did they do a CT scan to look at it? Were they already doing some other surgery? Crohn's can cause pain that is very similar to appendicitis; I had to have a CT scan done at one point to rule it out, because what I described to my doctor was exactly what appendicitis would have done. If they didn't check into it thoroughly, it's possible that your appendix was fine and the symptoms you were feeling were Crohn's.

When you were on the steroids, were you taking any other medications? Those side effects are rough; similar things happened to me. Were you able to sleep? On Prednisone, I slept only a couple hours every few days until the point that I began hallucinating. I also had similar laughing / crying fits. If you did have insomnia, maybe try asking for a sleep medication (nerve pills like Xanax are sometimes used for this, because the steroids speed up your mind while slowing down your body - giving you medicine to just calm your mind usually does the trick) if you have to go on steroids again. There's also the option of enteral nutrition - you might want to look into that as well.

Have you talked to your doctor about other medications? There are quite a few more than you have tried - it's ridiculous to put you back on the Pentasa when it didn't work and there are other options. How long did you take it? My doctor told me it can take up to three months to fully kick-in, so you might want to give it another shot.

Basically, my advice for you would be to talk to your doctor. Are you seeing a gastroenterologist? If not, you should request a referal to one. If so, you might want to look for another. It doesn't seem like your doctor is keeping your care a priority, and it also doesn't seem like you trust them (can't blame you).

Was the sigmoidoscopy before or after the second round with Pentasa? Has your medication been changed since then? What symptoms are you experiencing?

 

[Debbielouisa]

no my appendix was years ago.... i went in with severe pain and he did a internal exam with hs fingers and said it was appendix and a few hour later it was removed.. so i have no idea! that was all in the past ten years when they never investigated any of my illnesses, i had liver abnormalities/reflux/ and they just sent me home! great hospital....
No i was only on the steroids, they put me on them for a third time but only 6 a day aposed t the 9 and the symptoms calmed down a little luckily.. i was on pentasa months and kept having flair ups, i was also put on pentasa and pred, the sigmoidoscopy was after the pentasa.
now im having loss of appetite, diarrheah after every standard meal, sickness, tired, drained, (i usually have severe swelling but none this time) stomach pains, tender stomach, and according to the specialist its swollen inside.

Thans for reading
x

 

[SarahBear]

I'd say in that case, it is very possible that your appendix problems were Crohn's - but then again, it's impossible to say now! You didn't need that thing, anyway.

Typically another medication (to actually treat Crohn's) is prescribed with the steroid (which reduces inflammation and allows the body to absorb nutrients and the maintenance medicine). It's kind of strange to treat only with steroids - because when the steroid is gone, what's to keep the inflammation from coming back? Nothing has been done to stop it.

After the sigmoidoscopy, did they not suggest trying something else?

I'm sorry you're having a tough time. In your situation, I'd definitely try to talk to them about a different medication.

 

[Debbielouisa]

i just feel im going backwards all the time. if i get upset ot stressed i will have a flair up guaranteed.. that an a few trigger foods eg milk fresh orange an alcohol....i have another ct soon an they have booked me an app in 8 week. so will have to get together what i need to ask them..

 

[SarahBear]

I'm glad to hear you're getting there!

You might want to ask them about getting on a new medication - find out what options you have and what the benefits and risks are. There's a lot of information on the Treatment forum on this site. Just keep in mind (when reading about bad reactions others may have had to medications) that they're different for everyone and because it worked or didn't for someone else does not mean it will or won't for you.

If they suggest steroids for any reason, mention the bad side effects you had last time. Like I said before, if insomnia was an issue, tell them - and ask if they will be able to give you anything if it happens again.

If you haven't had your vitamin levels checked, it would be a good idea to ask them to do that as well. If anything is low, they'll give you advice on what you should take to fix it. Righting your vitamin levels can make a big difference with fatigue.

Beyond that, I'd suggest that you stick around and read others' posts. It's a good way to learn a lot about Crohn's and what your options are. You might look for other posts in which people listed things to discuss with their doctor (I've seen a few like that) and see if you can get any ideas. Feel free to ask questions at any time.

 

[David]

Hi there and welcome to the community! I'm glad you joined but am so sorry to hear of your struggles

SarahBear has given some wonderful advice and I agree - it sounds like it's time for some more powerful medications, especially with the fistula. Something like Remicade might be in your best interest. Hitting it with enteral nutrition like Sarah mentioned would be great too as the more treatments you have working to control the disease, the better in my opinion.

We're here for you.