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Small Bowel Crohn's

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PJ1973

I do not know really what to say, but here it goes.....

I was diagnosed officially yesterday with Crohn's of Small Bowel. My doctor showed me the x-rays, which showed an ulceration in a small bowel.

She said my case was mild. I am thankful for that. I went to the doctor's office expecting the worse.

My questions are for anyone that have had a similar experience:

Fortunately, I do not have the many symptoms of Crohn's. My main symptom is constipation. I rarely get stomach pains. I also have some ulceration in my small bowel.

Question 1: The medication that I plan on starting this weekend is Pentasa 500 MG. If you have taken this medication, what is your experience with that?

Question 2: Has anyone had been diagnosed with a mild case of Crohn's and after being medicated and healed, does your life go back to normal?

In advanced, thank you for anyone that takes the time to answer. I feel very fortunate and look to get past this trial in my life. I know things can be alot worse and am thankful for my overall good health.

Take Care,

PJ:sign0085:
 
C

Crohn's 35

Inactive Account
Hi PJ, :welcome: I have been on Pentasa many times, and it is for mild to moderate cases. I had no side effects ever from it, but everyone differs. Everyone is different with the severity but the low residue diet helps maintain best results.

You only take 1 500mg pill? Most start at 3000mg to 4000mg. Glad you are here, hope you join the community!
 
Rebecca85

Rebecca85

Location
Nottingham, UK
Constipation is not unusual in small bowel disease. As for the Pentasa, that is the med I started on. I had no side effects whatsoever, and it stopped me getting worse as I tapered off the steroids. But it wasn't strong enough to actually make me better, hence the azathioprine.

And yes, a small percentage of people only ever have the one flare and then live perfectly normally. But you increase the chances by taking a med to maintain remission, and taking care of yourself certainly won't harm!
 
2thFairy

2thFairy

I took Pentasa for about five months. No side effects at all. Do not be alarmed if you have speckled poo, though. The capsules have tiny balls of medicine inside which come through in stool. Also, the underside of the toilet seat may get permanently stained with reddish-brown/purple spots. I'm a clean freak and it weirded me out. I bought a plastic seat and no problem.
 
Astra

Astra

Moderator
Hi PJ

I've been on it for 5 years and only had one major flare in hospital, and after having nearly 9 months of Pred and Entocort, I believe I'm ok. Pentasa will be my only med when I finish Pred in 2 weeks. My Pentasa is in tablet form, not capsules with little beads in. I've never had any side effects from it neither.
I was dx with mild to moderate in terminal ileum too, I'm leading a 'normal' life too!
 
Last edited:
mario

mario

People will be geting bored with me today but just discovered how great this site is. I was very ill and diagnosed 2 years ago. Needed surgery etc but afterwards was given pentasa and lopermide and i feel great. Long live pentasa!!!
 
georgiegirl

georgiegirl

Hi PJ, I was diagnosed in August and started on Pentasa straight away. I noticed a very small improvement, but no side effects at all (my GI told me it was the safest drug, and most people on here do seem to start on it). However after a month, the GI told me it wasn't doing enough, and now I'm on the dreaded Prednisone and Azathioprine. I started feeling a million times better almost straight away, and have had no major side effects (a little bit of a moon face and some irritability, as well as feeling like the energizer bunny at times!).

I'm tapering the Pred, and hopefully by that time the Azathioprine will kick in. Once the inflammation goes away I might even get off the steroids and just stick with Pentasa. Try not to worry too much about side effects (easier said than done) until they actually happen. I'm just getting over the paranoia now - every little funny thing I felt could be a possible side effect! It was driving me crazy!!!

Sorry I can't help with the after you're healed question, I'm still getting there. But I'm determined that I will - and being on the drugs has shown me that I can definitely live a normal life!
 
P

PJ1973

Pen said:
Hi PJ, :welcome: I have been on Pentasa many times, and it is for mild to moderate cases. I had no side effects ever from it, but everyone differs. Everyone is different with the severity but the low residue diet helps maintain best results.

You only take 1 500mg pill? Most start at 3000mg to 4000mg. Glad you are here, hope you join the community!
Click to expand...
Hi Pen. Thanks for the feedback!

500 mg per pill - 2,000 mg per day first week

500 mg per pill - 3,000 mg per day second week and thereafter
 
P

PJ1973

Rebecca85 said:
Constipation is not unusual in small bowel disease. As for the Pentasa, that is the med I started on. I had no side effects whatsoever, and it stopped me getting worse as I tapered off the steroids. But it wasn't strong enough to actually make me better, hence the azathioprine.

And yes, a small percentage of people only ever have the one flare and then live perfectly normally. But you increase the chances by taking a med to maintain remission, and taking care of yourself certainly won't harm!
Click to expand...
Thank you for the information Rebecca! This board is great.
 
P

PJ1973

2thFairy said:
I took Pentasa for about five months. No side effects at all. Do not be alarmed if you have speckled poo, though. The capsules have tiny balls of medicine inside which come through in stool. Also, the underside of the toilet seat may get permanently stained with reddish-brown/purple spots. I'm a clean freak and it weirded me out. I bought a plastic seat and no problem.
Click to expand...
Good to know 2thFairy because the speckled poo would have probably freaked me out too without knowing.
 
P

PJ1973

Astra101 said:
Hi PJ

I've been on it for 5 years and only had one major flare in hospital, and after having nearly 9 months of Pred and Entocort, I believe I'm ok. Pentasa will be my only med when I finish Pred in 2 weeks. My Pentasa is in tablet form, not capsules with little beads in. I've never had any side effects from it neither.
I was dx with mild to moderate in terminal ileum too, I'm leading a 'normal' life too!
Click to expand...
Thanks Astra101. I guess what is a 'normal' life? To me, it would be getting back to the things I was doing before I wasn't feeling well. I want to be able to run races again and lift weights. I probably can live with giving up booze, but I definitely could use some type of outlet such as running.
 
P

PJ1973

mario said:
People will be geting bored with me today but just discovered how great this site is. I was very ill and diagnosed 2 years ago. Needed surgery etc but afterwards was given pentasa and lopermide and i feel great. Long live pentasa!!!
Click to expand...
Good to hear you are feeling great Mario. That encourages me that i too can get better.
 
P

PJ1973

georgiegirl said:
Hi PJ, I was diagnosed in August and started on Pentasa straight away. I noticed a very small improvement, but no side effects at all (my GI told me it was the safest drug, and most people on here do seem to start on it). However after a month, the GI told me it wasn't doing enough, and now I'm on the dreaded Prednisone and Azathioprine. I started feeling a million times better almost straight away, and have had no major side effects (a little bit of a moon face and some irritability, as well as feeling like the energizer bunny at times!).

I'm tapering the Pred, and hopefully by that time the Azathioprine will kick in. Once the inflammation goes away I might even get off the steroids and just stick with Pentasa. Try not to worry too much about side effects (easier said than done) until they actually happen. I'm just getting over the paranoia now - every little funny thing I felt could be a possible side effect! It was driving me crazy!!!

Sorry I can't help with the after you're healed question, I'm still getting there. But I'm determined that I will - and being on the drugs has shown me that I can definitely live a normal life!
Click to expand...
Hi Georgie Girl! Glad to hear that it is the safest drug and glad to hear you are getting to feeling better.
 
Rebecca85

Rebecca85

Location
Nottingham, UK
We do have members on here who run and lift weights. I can't, but then I couldn't before either! I can still walk my dog, which is about as active as I was prediagnosis. But due to fatigue, I must rest and make sure I am hydrated afterwards. I am just starting treatment for anaemia, so hopefully that will help and then I will be able to do everything I could before. Fingers crossed you can too!
 
Keara07

Keara07

Unfortunately I cannot take pentasa - it made my guts bleed - for some reason, it didn;t wait until the small bowel like it should. I only learned this after taking it for two months and ending up in emerg life saving surgery and the NG tube showed the bleeding after I would ingest the pentasa, and minutes later blood was in the tube, wherein if they skipped my doses, it was clear.

I had been on 4000mgs daily.

Still searching for something to work cause the surg did not put me into remission - my main sympton with CD is severe daily pain.

That said - my uncle has great results with pentasa and remicade now and is symptom free at 65 :)

hang in there - hope you are mild and go into a remission state and never leave - take care!
 
P

PJ1973

Keara07 said:
Unfortunately I cannot take pentasa - it made my guts bleed - for some reason, it didn;t wait until the small bowel like it should. I only learned this after taking it for two months and ending up in emerg life saving surgery and the NG tube showed the bleeding after I would ingest the pentasa, and minutes later blood was in the tube, wherein if they skipped my doses, it was clear.

I had been on 4000mgs daily.

Still searching for something to work cause the surg did not put me into remission - my main sympton with CD is severe daily pain.

That said - my uncle has great results with pentasa and remicade now and is symptom free at 65 :)

hang in there - hope you are mild and go into a remission state and never leave - take care!
Click to expand...

Sorry to hear Keara. I hope they find something that get you to feeling better.
 
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