When will I get relief?

[amanda4286]

Hi all! I'm new to the forum, but not to Crohn's. I was diagnosed in 2003, and as many it's been a roller coaster ride. Let me start by giving everybody a little bit of background. When I was first diagnosed the doc said it was in my stomach. I was constantly vomiting everything I ate. I was put on pred. and 6mp. It took awhile but I finally went into remission. From there I lost insurance so had to stop taking my meds. Went a few years with no problems. Around March of last year I started having signs of a flare so I went back to the doc, he did an endoscopy and colonoscopy. He said my small bowel was inflammed and wanted to do X-rays. Before I could get the X-rays done I found out I was pregnant. The entire pregnacy I was great (besides the normal morning sickness). I had my son in Dec. and by Feb. signs of a flare started coming back. Within the past two weeks, my life has been hell. I am going to the bathroom around 15 times a day. The pain in my stomach is unlike anything I have ever experienced. I can barely eat. I went to a new GI a few days ago and he put me on Flagyl, Pentasa, 6MP, and entocort. I also go in next week for a CT scan of my abdomen. Anybody have any idea when I will start to show signs of improvement? I have a 5 month old and don't know how much more of this I can take.

 

[Regular Joe]

The med line-up isn't too bad. I understand why your GI chose them.

I don't think anyone is real sure why Flagyl works, but sometimes it relieves the diarrhea and stomach pain.

Pentasa is like Asacol or sulfasalazine. But it's more targeted for Crohn's in the small intestine ileum. Its an "aminosalacyclate" (works like asprin) to treat inflammation but it more often is used to maintain remission instead of induce remission. In other words it probably won't knock out the flare, but it may help if you don't react against it.

6-MP is an "Immunomodulator" which means its targeting the immune response to the inflammation. Good backup planning on your GI's part. It sounds like he knows his stuff. 6-MP takes several weeks to get up to full speed and probably will be monitored to make sure it doesn't get into your system too fast. You proably won't see any results with this one until much later.

Entocort - This one I'm taking now, and from my experience, it is a "lightweight" steroid. But it does target active inflammation in your small intestine and the beginning of your large intestine. If they suspect Crohn's where it is and they haven't got a CT scan or X-ray, this is also probabaly a good choice to start with considering multiple medications you're taking, and Entocort really doesn't have as bad side effects as prednisone.

Entocort is working for me. I started a little more than 2 weeks ago, so it's taken 2 weeks, but it is reducing my flare. I notice a difference now. But it's subtle. The pain and the diarrhea didn't go away quickly. I still have some flare symptoms, but now after 2 weeks, my symptoms have not got worse, and I can manage life with the symptoms better. I haven't missed any time from work in two weeks, whereas before the Entocort, I was out at least 1-2 days in a week because the pain and pooping were so bad and getting progressively worse.

What I'm saying is, unfortunately, with the medication lineup you have, you're probably going to be in pain and in the crapper more than you like. And it won't seem like it's working because if it takes Entocort a couple weeks to start working in you, that's a long wait to be dealing with pain. The good news is, you probably won't go backwards and your level of pain and discomfort won't get worse if Entocort works for you. Also, through whatever clinical mechanism Flagyl reduces pain and diarrhea (is it anti-inflammatory or immune-suppressing?), it might work in the short term and you might get results within a few days. But Flagyl may not work for you - there's that chance.

It sounds like your GI is being both agressive (so many avenues in meduication) yet conservative - not prescribing the most or biggest medicine lineup and this stuff is targeted for where he suspects the disease is active. If things get worse, let him know immediately. If things don't seem to be getting much better, give it a week or two.

Hang in there.

 

[amanda4286]

Thanks for the input! I can't imagine my pain getting any worse, so it's good to know I shouldn't go backwards, but at the same time I can't imagine dealing with this for 2 more weeks either! My doc had told me that the Entocort wouldn't have the side effects that most steroids do, but I'm already starting to notice a few. I have started to snap over very little things (which isn't like me at all). I guess that could also be just from being tired of being sick! I'm also having problems sleeping at night which I had when I was on prednisone before. They prescribed me ambien before to help me sleep but now with a 5 month old I would say sleep aids are out of the question! I will be so glad when all of this is over, I will say though I learned a huge lesson in that I will never let me health go again.

 

[Regular Joe]

Oh I had the side effects like you did. It still makes me a little "moody" now, but it isn't as severe as it was over the first three days when I started on the Entocort...he he it's 3AM so I'm still dealing with that side effect. Day 3 and 4 were really bad as far as irritability and mood shifts. But Crohn's gives me mood shifts too, so I figured I should just deal with the side effects because I know pred side effects will be worse and that would be the only way to get more agressive.

Also, for me, it wasn't just like in two weeks it suddenly got better. It was so gradual I didn't notice it until I realized that I hadn't missed any work in two weeks which made me realize that even though I still had pain, and some diarrhea, it wasn't as bad as it was. You know what I'm saying? It wasn't like having that "feeling better" feeling. "Feeling better" was just a realization that I wasn't feeling as bad, and that came throughout the two weeks until now - where I really can notice less pain because I can move and do more things.

 

[Crohn's 35]

HI Amanda, welcome! Congrats on your son, and it is not surprising that when Women Crohnies get pregnant, they do into temporary remission. The need to find a cure in that direction.

Sounds like your Gi is being aggressive in treatment, although Entocort is mild and so is Pentasa, 6mp lowers your immune system to make the other meds work. Hope you get better soon.

 

[dreamintwilight]

I'd agree with having those 2 side effects, Amanda. And like Joe, they seemed to lessen in time I'm actually on it again now (after an obstruction) and the sleeplessness didn't bother me as much (make sure you take it as early in the day as possible) this time. Not as emotional either.

Hope you continue to improve!

 

[amanda4286]

Thanks ladies. I have a new GI this time and when I mentioned that I went into remission when I was pregnant he gave me a really funny look and said he didn't think me being pregnant had anything to do with me going into remission. But I have heard from other women the same thing happened to them. Looks like if that's the case they would be able to possibly give you some kind of hormone. But what do I know?

 

[Crohn's 35]

I agree with you Amanda, from learning of people being in "remission" when they are pregnant, to major flaring and pain in the LRQ during menstral periods, makes me wonder there is a cure there with hormones. Stem cells are being sought. Genes also come into play, there are a few twins and they both have CD. When I ask for pain meds, (periods are very very painful) my Gi says, tell your Gp and when I ask him he says why and I tell him because my CD creates the pain he says, go ask your Gi... talk about passing the buck, and I assure you I am not a teenager looking for drugs. You have to tell them what you know and when your pains are acting up. They say after menopause it settles greatly... I will let you know LOL in a few years .

 

[Astra]

Hi Amanda
and welcome

funny isn't it, how we are so different and unique, I'm on Entocort now, for 3 weeks now, and haven't noticed any side effects at all, sleeping like a baby, eating well, no emotional stuff or moodiness, now Pred is another story!! but I like Pred, it healed me straight away and I enjoyed the energy and speediness it gave me, but I'm a weirdo like that!
Interesting tho, about the pregnancy, I was so well and healthy during my 2 pregnancies, and I'm even better now, Crohns wise, since having a total hysterectomy, my bits were glued to my bowels! urgh! I would recommend it to all Lady Crohnies!!
I was on mercaptupurine too, did diddly squat for me, and the azathioprine was toxic!
good luck, hang on in there, give it some time
lotsa luv
Joan xxx

 

[BLM]

Hey Amanda....you sound just like me....Been sick for years...went into remission, had a baby in October and have been sick since then. I was hospitalized two times and have been on all kinds of antibiotics, steroids, and pain pills. In the last few days Ive finally started to feel better, but I have had some awful days where I thought I was going to die....and I have a three year old and a 7 month old. Just keep on your meds, and lots of fluids. My docs always said I could use immodium...but the cramping I got from not going was just as bad as going. I also take a medication for cramping called Levbid (hysocycomine) and that helps. Hang in there....and I wish you luck~

 

[amanda4286]

Thanks for all the words of encouragement! I had my CT scan today and the barium didn't sit too well with me. I got sick twice, they went ahead and did it anyways, hoping I had enough in me. I am starting to notice a slight decrease in my trips to the bathroom, and the abdominal pain, but now I'm dealing with extreme nausea and vomiting. Any advice as to which med may be causing this? It says it's a side effect from all of them, but I'm thinking it's more than likely the flagyl from talking to a few other people. It just seems like if it's not one thing, it's another.

 

[snakeyes]

Hi i just got in this forum a few minutes ago but can't figure out how to post a a new post... it says i may at the bottom, any help would be greatly appreciated, i don't want to add my problems with the poster's altho i feel for u, i had it almost as long and from what i read they are right and it does take time for the meds to work, if they are to expensive for ya there is many companies that will give u free meds if u don't make to much money. Hang in there in a few weeks u should feel alot better, not completly new again but better..

 

[dreamintwilight]

I would agree it's probably the Flagyl. When I was on Cipro and Flagyl together I was extremely nauseous. I never threw up though. I just tried to do some deep breathing until the nausea went away or laid down and closed my eyes for a while. Try to take it when you have something to eat with it too. Should minimize the effects. Glad the pains is lessening. Make sure you drink lots of water after the barium test to flush the barium out. I didn't drink enough and it kinda hurt when it finally made it's way out because it had solidified.

 

[Regular Joe]

I saw that you previously took 6-MP and prednisone. So it's probably not Entocort or 6-MP giving you problems. From what has been written here, others say Flagyl is the culprit which is probably true - I don't have experience with it. But my girlfriend had a bad reaction to Asacol, which is in the same family as Pentasa - "aminosalacyclades" (sp.?). If you are intolerant to asprin, then Pentasa could also be a problem.