Just diagnosed with Crohn's

[uab grad student]

just diagnosed with Crohn's

Hi everyone :smile:

I just found out I had Crohn's after years of feeling "defective". I was so happy to find this forum where others like me and with even worse symptoms are trying to achieve a normal life. I am currently 29 yrs old, female, and have been having symptoms since I was 23. My symptoms started 6 yrs ago with abdominal pain, weight loss, and diarrhea very frequently (>7 times/day most days and on really bad days >10). Although, I didn't believe it, I stupidly accepted the initial diagnosis of irritable bowel syndrome (IBS) and suffered in silence until a couple of weeks ago. In the years between my first symptoms and my eventual diagnosis, I had to have an anal fistula removed in 2005 (yet still no diagnosis of Crohn's), had constant iron deficiency anemia and often was too tired to go into work, etc.

Finally, the last month has been bad enough to lead to a final diagnosis--I went to the ER for excessive blood in the stool mixed with blood clots (I had been doing this off and on for years, but I got very weak this time and was p*ssed off enough to demand someone really examine me!) and abdominal pain.

Last week I met the best doctor in the world, my gastroenterologist. She really listens to me and I finally felt human again. She told me she suspected Crohn's but they would have to do a colonoscopy... I had a name to my suffering and instead of feeling depressed, I had a strange peacefulness and sense of hope. At least I could start treatment! During the colonoscopy, they found lesions in my small intestine and a very small part of the large intestine. I am on 9 mg of entocort a day (3 x 3 mg pills) until I see the doctor on this Monday.

I am still having pains that come and go... when I'm in pain it is most severe for an hour when I feel like I could die, I have many bowel movements of almost all blood and mucus, then I remarkably feel better, although weak.

I have several questions for the more experienced "Crohnies" out there :

a) What was your experience with entocort? How long did it take to relieve your symptoms, if at all?

b) Should I ask my GI doctor for meds for pain management? The pain is so intense sometimes I get nauseous and I must look green in the face! :eek2:

c) What meds have you found the most helpful for your symptoms with the least side effects?

Thanks for any of your responses! Please have a very Merry Christmas. :smile:

 

[My Butt Hurts]

Hey UGS - glad you finally got a diagnosis and that you have a wonderful doc!
To answer your questions-
A - I've never been on entocort. My GI says it isn't strong enough compared to predisone. So I can't help you with that.
B - I usually don't have severe pain, so I'm not on any pain meds. I'm thinking that if you get your flare under control , that might help with the pain - so maybe hold off on the pain meds? (I can say that, not being in pain of course.)
C - YAY! I can answer this one. The first med I was on was sulfasalazine. It's considered one of the milder drugs, but it worked very well for me for 2 years. Pentasa (similar to sulfasalazine) worked well for a few years too. I have had very few side effects with most drugs, my problem is that they just quit working after a while.
Good luck, and hope you feel better.
Welcome to the forum!

 

[GoJohnnyGo]

Entocort was great for me. Settled down my flare in very short order.

 

[imisspopcorn]

:welcome: Grad student. I have been on Entocort and Prednisone at one time or another. Entocort has far less physical side effects compared to Prednisone but isn't as effective in Crohn's that is in the small bowel....It has been a while since I was on it, but it still worked pretty fast for me.

If you are having pain that is affecting your normal everyday life, you should ask for something. The only problem with pain meds is that if they are narcotics, you can't drive while taking them...I have children and didn't feel comfortable taking them during the day because I felt so dopey. But they did help me rest at night.

I would have to say that Asacol/ Pentasa where the most helpful to me with the least side effects....But they no longer work. I am currently on Remicade and am feeling good.

I am glad you found this forum. There are plenty of knowledgeable and supportive people here. If you have any other questions please ask.

 

[Pirate]

Hi UGS- welcome to the family. I to was missed DX for about 6 yrs, being told it was a nervous stomach. I was also in a lot of pain and passing blood, only mine was coffee colored because it was in the doudenum sp?. When I was DX I went to the ER a week before my first GI appointment and was finally DX and yes it was sorta a relief to put a name to it, but yet I was scared because I had never heard of it before and I was worried about leaving my than 25 yr old wife and 3 young boys all alone. I was down to 118 lbs and my stomach and duodenium ? was loaded with gangrene and I had my stomach pumped for 7 days and was put on 80 mg of Pred to try and clear things up. My GI told my wife if she would have wait until morning to get me to the ER that they may not have been able to save me. (Don't ever be stubborn and think you can wait it out).

1)I am on Entocort, same dose as you but it doesn't seem to be helping me so we are looking at starting Remicade as soon as I can get tapered off the Entocort. I also take Pentasa, but it wasn't doing much so my GI started the Entocort.

2) Pain meds are good to a point. I have Vicidin 500 mg if I need it ( so don't mind all the misspelled words and out of order words either, I am in quite a bit of pain right now) I know Vicidin and other pain meds are hard on your liver and other parts, but they are great for severe pain. You do sound like you are having severe pain so it wouldn't hurt to ask, just really learn how to manage the pain and pain meds.

3) Prednisone was the best to get it under control. Once I was in remission I quit taking everything but Pepcid. Did good for a long time with only the occasional minor flare up at which time I would rest my stomach by eating jello and only liquids. This time it ain't working so my GI says its time to do it her way.

Sorry for rambling, but you can get away with it when you've taken 500 mg of Vicidin>

 

[Crohn's 35]

Hi there.. I guess I qualify as an older Crohnie lol, welcome to the forum. I had been on Entocort 2 times the first time I was too severe, as Entocort is for mild to moderate cases. I also took Pentasa (5 asa) but it wasnt working then I had to go on Prednisone. Tylenol 3's help me now but in the severe stages I was on Talwin, then Dilauded, and I hated it so then I got tylenol 3rd. Tylenol has a tendency to constipate and or cause bowel blockage if you are narrowed. But most of us have some pain meds because you never know, and it is painful at times.

Second time on Entocort was after my first resection at 32 and lasted almost 8 years. Having said that, everyone is different but if you can get it to work for you it is best. Prednisone does work but only for a short term, has many side effects but you are usually out of pain.

Pentasa could be in conjunction with Entocort, it is an antiinflammatory and it helped me in the early stages. Any time you need help, come on line we are all in the same boat...right Pirate??!

 

[shazamataz]

Hey there and welcome! I have only been on Prednisone so can;t help with quiestions but wanted to welcome you. This is a great place for advice/support/information. Make yourself at home!

 

[tamesis]

Hi there! I am still struggling to get diagnosed myself, so i can't help with any of your questions....But i wanted to say welcome, this is a great support system!

 

[Pirate]

Yup, we're all in (ON) the same boat. The Flying Feces and I'm the Captain so stay off me poop deck.

 

[uab grad student]

Thanks for all y'all's advice! I love your quote, Pirate. One thing I've already found on this forum to be very therapeutic is a sense of humor.... instant relief with very little side effects, lol.

oo:

 

[CrohnsHobo]

Welcome.

1) Never took Entocort.

2) Like you I had pain that made me nasuses and very faint. I tried to man up for years, but this summer I said screw and asked for some pain meds. I used to take 10 or more Tylenol a day. I then got Vicodin and did that for about three months but they didn't really help and I was not sleeping due to the pain. I then got Percocets and those have really been difference makers. I take about four of them a day. I still get some pain but I am able to sleep all the way through the night. I don't get doppy or tired from them and go to work just fine. I am hoping to get better and not have to take them soon.

3) Prednisone always picked me up super fast, but the side effects suck. Been back on it since Monday, and I am already getting a lot of pain in my hips and knees. But I feel better than I have in a year.

6MP and Asacol worked great for me for about 8 years then stopped.

Remicade worked for about three years then stopped.

Now I am starting Humira in January and seeing a consultant for my surgical options.

Welcome to the forum! It is a great place!

 

[Peaches]

:welcome: UGS!!! I so glad you are happy with you GI - that is like one of the biggest hurdles for some people here - getting a doctor that they feel like they can trust and that listens. How wonderful for you right off the bat!

I took entocort many years ago and I think it did *ok* for me. Wasn't super like Prednisone was - but then again - not all the yucky side effects either. My wonder drug so far has been Remicade (5 years) but I believe I am starting to not have response to it any longer ( This happens - and luckily we have many drugs to try out there - so no fretting over that (I keep telling myself!). The bleeding is a concern I'm sure - I bet you struggle with fatigue a great deal. Hopefully they can get that quieted down. I have never had severe bleeding, but did have a lot of mucous in the beginning when I was super active. I am pretty sure I have active disease at present - and what I find that happens is when stuff passes through that area I can get very nauseated and super crampy and sometimes feel like I'm going to throw up and pass out all at the same time (this just happened to me like an hour ago). I'm usually holding my stomach when this feeling happens and I can literally feel stuff passing through the areas where I know I tend to have active disease, and that is the area that hurts the worst as I'm going to the bathroom. (welcome - this is how we talk here - fun fun!) I am unsure what to say about pain meds. I never take them (except for back pain or tooth issues) because I feel like they mess my gut up practically every single time I do. I usually just deal with the pain - but I'm sure my pain is mild in comparison to many here. If you feel like you just can't cope - then yes, I would ask for pain meds. Some docs tend to be cautious with Crohn's patients as there is a trend for them to be "drug seekers" - so just be aware of that. I had to sit and listen to a patient who was getting a Remicade infusion work her way through three different people with three different tactics trying to get pain medication (and to me, it sounded like she was already high on something!) - her doc finally came in and handled the situation - but it was painful to listen to. At any rate (sorry - side track!) - tell your doc now so that if they pain gets to be too much - they'll already be level set that you are having issues. Hope you get to feeling better soon!