Newly diagnosed with Crohn's colitis, waiting for prednisone to kick in

[Magnolia soulangeana]

I've always had a "sensitive" digestive tract, so I can't say I was entirely suprised with the recent diagnosis. Through the years I have stopped eating certain foods that always seemed to upset my system (meat, carbonated beverages, fried food). I never really thought too much about it.

After about 8 months of severe, unexplained fatigue, I started to have unexplained bleeding and (more than usual) diarrhea in early September. The bloodwork showed I was anemic and my GP immediately referred me to a GI specialist. I had a colonoscopy November 1. Since then my symptoms have gotten worse and what was tolerable cramping turned into debilitating pain. I have spent the better part of this past week curled up in bed. I can't bring myself to eat much of anything, I've lost ten pounds in the past month.

I was diagnosed on November 14 with Crohn's colitis. I wish I had asked more questions, but I was just sort of stunned. I am putting a list together now for the two week follow-up. So I started 40mg of prednisone, today is day 3, but no improvement yet.

I am all out of sick days at work...I am not sure what to do about that. My husband is so worried about me; I think I want to feel better almost as much for him as for myself. I want my life back - I use to run and do hot yoga - now I am too tired to do much of anything. I have always taken good care of myself, this diagnosis just feels unfair.

I guess I am just trying to re-orient myself now. Drop the self-pity and move forward. This forum is helping me feel a little less alone.

 

[Hobbes650]

Hi M.S.! Welcome! I think the Pred should start to make you feel better any day now. That's the good news- Pred starts to make the pain go away quickly. The side effects kick in later, that's the bad part- but the severity is different for everyone. This is a great site with great members and the more you look around the more answers you'll find. And do remember, there's nothing you did wrong. IBD is by it's nature, a very unfair and indiscriminate disease. I hope you start to feel much better soon, and please keep us all posted with your progress!

 

[Magnolia soulangeana]

Hi Hobbes,

Thanks for the welcome!

I really hope you're right, that the pain will go away soon. I was up 4 or 5 times last night and am still in pain now. I want to eat, but food is a bit terrifying, like swallowing a timebomb.

I will keep exploring the site.
Thanks for your support.

 

[Hope345]

Magnolia,

My daughter also has Crohns Colitis. Since this location tends to bleed a lot, anemia is an ongoing symptom. She just had two infusions of iron, which was a new method for her. It worked immediately to get her energy level back up and she was back to herself again.

However, with the Crohns, she also did the Prednisone and is now on Remicade which got her from a severe flare to a constant mild flare.

Does your doctor have you on iron and eating lean red meat? That worked pretty good for our daughter at first. Taking iron tablets can have its own set of problems, so that is why her doctor chose the iron infusions.

I hope you get feeling better and this site is such a good source for information and wonderful support.
let me know if I can answer any questions for you.:hug:

 

[Magnolia soulangeana]

Hi Julie,

Last time my iron was tested was in mid September, when the bleeding had just (visibly) started. I began iron supplements then. But you're right, the blood loss is pretty significant and I am sure the iron supplements are not enough.

I have been vegetarian for 15 years...red meat was actually one of the first foods I gave up because it was too hard to digest. In all of that time, I never had a problem with anemia before. I didn't know about iron infusions... will ask about that at my follow-up. Thanks.

 

[Hope345]

Magnolia,

Re Prednisone:It did take a couple of weeks for the Prednisone to kick it, but it helped so much. Baylee unfortunately also got all the side effects to go with it. As soon as we started tapering the Prednisone, the Crohns came back. The second time around, I did not feel as if the Prednisone was as effective, but we felt at that time we had no other choice. It is so important to get this disease out of a severe flare.

We have not tried the other alternatives mentioned (EN) by others, but I am certainly going to consider them. Another member, Gianni, also believes in juicing, which I plan to try for our daughter. You might check out his site on here too. It has worked for him and others.

We are also praying they find a cure soon. Treating the symptoms helps, but we all want to find a way to stop this disease in its tracks!!!

talk soon

 

[Hobbes650]

Hi Hobbes,

Thanks for the welcome!

I really hope you're right, that the pain will go away soon. I was up 4 or 5 times last night and am still in pain now. I want to eat, but food is a bit terrifying, like swallowing a timebomb.

I will keep exploring the site.
Thanks for your support.

The food is the hardest to figure out. There are times when everything causes pain. In general though, the softer and low residue foods are more tolerated. Protein shakes, or similar items like Ensure can be very helpful. Many poeple like vegetable juicing. I even liked some pureed baby food items. But since there may be times you won't feel like eating all due to the pain, at least try to keep your fluid intake up. Preferably with electrolytes. It may not help a lot, but it does help. Oh, I'm sure there are lots of people who try Crohn's specific diets and they swear by them. I can't recall what those names are (I think SCD Diet is one).

 

[David]

Hi there and welcome to the community. I'm so sorry you're suffering so much, you poor thing

I'm just trying to timeline things and get a feel for what's going on. Did the symptoms get worse once you began taking the iron pills or was the worsening only after the colonoscopy?

I realize your symptoms got a LOT worse after the colonoscopy. Immediately after or a few days after? And on a scale of 1-10, what was the pain like pre-colonoscopy and post colonoscopy?

And have you communicated to your GI doctor this worsening of symptoms after the colonoscopy?

Thanks and again, welcome

 

[Magnolia soulangeana]

Hi David,

Thanks for your welcome and support. It is much appreciated.

I started on the iron in mid-September without problem. The colonoscopy was November 1. The GI doc immediately reported pretty severe colitis (he said it was bleeding a lot while they were looking around). He ordered more tests to determine the cause (Prometheus blood work and stool ova and parasite, culture and sensitiviy, C diff toxin, Shigella, Salmonella, etc.) I started on Flagyl the day following the procedure. I was okay for a few days, then about week after the colonoscopy/Flagyl, I started getting more serious pain.

I would consider myself pretty tough. I used to be a distance runner, among other things. The pain was coming and going in waves. When it was not too bad, I was just uncomfortable (e.g., 3/10), but then it would build up to an 7 or 8/10. Somtimes it was hard to breathe it hurt so bad. I felt like an animal was digging a burrow through my guts. It would stay like that for a few hours before getting back to something more tolerable. I think that was maybe the worst of it - I have been in worse pain before, but I always knew the timeline for getting better - with this, I wasn't sure how long it was going to go on. Psychologically, it made it tougher to manage.

I toughed it out over last weekend, because the on-call doctor basically said the pain was consistent with the colitis and just to come into the ER if I felt "worse". So I waited and called my GI doc on Monday, and then Tuesday (urgh, office staff didn't pass the message), and finally got in to see him on Wednesday. He said all the infectious tests were negative and that based on the information, I had Crohn's colitis. I began the prednisone the same day. I meant to ask more questions, but I was still hurting and wasn't my usual assertive self.

So after a week of being bedridden in the fetal position, I am DELIGHTED to say that the prednisone seems to be working now. A few hours ago, the cramps started to subside to managable. I still have an achy feeling and bloody diarrhea, but one thing at a time I guess. I even ate a bit of soup, which seems to be digesting okay. It was more food than I have had in four days. I am still nervous to eat any real food (i.e., food that requires chewing).

I still feel pretty drained, understandably, but I can work through that - I put myself through grad school full time, working two jobs, with an untreated hypothyroid problem a few years back. I've learned how to manage with fatigue.

I suspect not coincidentally, but the hypothyroidism is auto-immune too. I also have PCOS...I am 29: I can't believe I am adding another chronic condition to my list. I just don't want "sick" to become a pillar of my identity, you know?

Thanks for letting me vent. I am mad at myself for being self-pitying, especially after reading through other posts today and seeing it can obviously be much worse.

I am really glad I found this forum. Thanks.

 

[David]

Thanks for elaborating on that, I feel much better now. I was just making sure you didn't have a potential perforation from the colonoscopy or other complication.

I am SO HAPPY for you that you're starting to improve, that's great!

And seriously, vent all you need. And don't be mad at yourself. Coming to grips with IBD is quite a process in itself. Be supportive of the emotions you experience

We're here for you.

 

[daliac51]

Prednisone

My 10yrs old grandson started taking 15mg of prednisone twice a day and Apriso .375g also twice a day. He has being taking them for 9 days and no improvement seems like he is getting worse. Can anyone tell us if this is normal to take this long or maybe he has been prescribed the wrong medication for his condition. He has been DX with having UC.... But maybe what he has is Crohn's . Please anyone. Thank you.

 

[Hobbes650]

Hi daliac! So sorry to hear about your grandson. Prednisone helps both UC and Crohn's patients so I would certainly check with your doctor. I was thinking about 2 weeks is enough time to see improvement, but could be different with young kids. Doubtful that Prednisone is the "wrong" medication- it's very good at reducing inflammation. May need to increase dosage. Not sure about the Apriso. Hope you see some improvement soon!

 

[Clash]

Hi daliac51, sorry to hear that your grandson is doing poorly. I agree with Hobbes, pred is used for both UC and CD.

I'm going to tag My Little Penguin because she may have more info on the amount of pred in relation to age. My son was diagnosed with CD at 15(at 98lbs) and was started on 40mg of pred which didn't give him any relief of symptoms, he was actually on the 40mg for a few weeks as we were waiting on the transfer from diagnosing GI to Ped GI. I would contact his doc if you aren't seeing any improvement, I do know if pred is going to work for you it does tend to work quickly but it is probably different for each person.

Hope your grandson finds relief soon!

 

[my little penguin]

Wanted to send hugs.
Sorry to hear about your grandson.
My son is 9 and about 31kg ( 70lbs).
He was on a long course of pred over the summer.
We started at 30 mg .
Whether its crohn's or UC the drugs would still be the same in the beginning and pred helps with both .
We saw improvement in symptoms for DS but it took a while on pred.
Reality for us was he didn't get completely better until we were on remicade.
If it has been 9 days I would call the Gi and give an update that way everyone is on the same page.
One thing to remember the gut did not get "sick" over night and it typically takes 6 weeks to heal sometimes longer.

 

[daliac51]

Thank you so much for your replies. We will be calling the GI.

 

[CantRemember]

Magnolia,
This is delayed since I'm just now reading your Nov. 14th posts. Also glad the Pred kicked in. I also have Crohn's colitis and was eating mostly vegetarian before this. I know through experimentation you'll find out what you can and can't eat, but don't be surprised if you have to give up on some favorites. Low residue, low fiber, seem to be recurrent themes in the area if successful diets. You also won't be able to tell for sure while you are getting the flare under control with the Pred because it will mask / stop the inflammation.

Sending you positivity and support as you figure this all out...

 

[Cozmo]

Hi Magnolia, Thanks for sharing your story with us. I have had a lot of Identification reading through. I was diagnosed with Crohns on 15th Nov 2012. I am still struggling to settle into the prednisone after 6 days on it now, but the inflammation prior was truely unbearable, so there is definite improvement. I started like you with general fatigue and an aneamic diagnosis of Iron and B12 deficiency, later followed with high inflammation levels in the blood. I've been vegetarian for 24years. I've been living mainly on white bread and potato the last few weeks, and suffered when I've branched out a bit. I was also a long distance runner (I really miss it). I hope to start up gently again when I feel up to it. There's a thread on this forum about Crohns and exercise which I've found useful and hopeful, although it often feels like some way off before I can enjoy exercise again. Anyway thanks again... keep us posted on your progress

 

[DAVID KINGHAM]

I've always had a "sensitive" digestive tract, so I can't say I was entirely suprised with the recent diagnosis. Through the years I have stopped eating certain foods that always seemed to upset my system (meat, carbonated beverages, fried food). I never really thought too much about it.

After about 8 months of severe, unexplained fatigue, I started to have unexplained bleeding and (more than usual) diarrhea in early September. The bloodwork showed I was anemic and my GP immediately referred me to a GI specialist. I had a colonoscopy November 1. Since then my symptoms have gotten worse and what was tolerable cramping turned into debilitating pain. I have spent the better part of this past week curled up in bed. I can't bring myself to eat much of anything, I've lost ten pounds in the past month.

I was diagnosed on November 14 with Crohn's colitis. I wish I had asked more questions, but I was just sort of stunned. I am putting a list together now for the two week follow-up. So I started 40mg of prednisone, today is day 3, but no improvement yet.

I am all out of sick days at work...I am not sure what to do about that. My husband is so worried about me; I think I want to feel better almost as much for him as for myself. I want my life back - I use to run and do hot yoga - now I am too tired to do much of anything. I have always taken good care of myself, this diagnosis just feels unfair.

I guess I am just trying to re-orient myself now. Drop the self-pity and move forward. This forum is helping me feel a little less alone.

Sorry to here you are having a flare up.Crohn's or colitis?I have been on prednisone for 21 years with out a break.Doctors have tried loads to get me offf them but they are the only thing that keep's me off the toilet all day.I've had my wrist fused due to steriods,which caused me to have keinbocks disease.Things will get easier once you are under control,40 mg is still quite a low dose to get on top off things so may take a higher dose to start working and then reduce steriods.For me,i have had crohn's for 21 years with 2 major bowel ops and 2 others linked to meds but don't regret any i have taken as i know i wouldn't be here now with out them.There is nothing wrong with self pity as it is hard to adjust to life with crohn's and you sound like you had an active life style.I hope they get on top of it soon and start you on azathioprine as for me,that's the one that keeps me going. I'm now on infliximab infusions which seems a shame that they don't seem to give it in the early stages as i think it could have stopped any opps i had.I'm not saying it's the best thing in the world but the difference i feel.I believe in early stages,it could help someone to lead a near normal life.Wishing you and your family all the best and hope next years a great year for you.

 

[stevej54]

The prednisone helped me immediately but the symptoms I had returned as soon as my dosages were reduced. I got thru three weeks of no symptoms which was the best I felt in months if not years. Now I'm a week post infusion with my first treatment of remicade. No real problems to speak of my my energy level is not what it used to be. I went from a 12 mile a week runner to struggling to finish 2 miles on the treadmill. I'm hoping that is not permanent. I will trade that for what we have all been thru with crohn's. Hope you feel better. Talk to your dr about remicade. It might be a option for you.

 

[Magnolia soulangeana]

Hi Everyone,

Thanks for your support.

CantRemember - what foods did you have to give up? Did you find it hard to eat a mostly vegetarian diet post diagnosis? I know I have to wait to be done with the prednisone before experimenting, but I wouldn't mind suggestions of where to start.

Cozmo - it really does sound like we have a ton in common. I am thinking of you, too.

Steve - I hear you, I was struggling to run a mile at a time and couldn't figure out why it was so hard to breathe. Glad you are feeling better now! Hope you start lacing up your shoes soon. Let me know how it goes.

Well I have been on the 40mg of prednisone for two weeks now and am supposed to start tapering off of it tomorrow, switching to 30mg. Although the pain has (mostly) resolved, my other symptoms remain unchanged. I have been trying to get in touch with the GI dr to see if it still makes sense to taper, but between Thanksgiving and an unresponsive office staff, I haven't heard back yet. Thankfully, I have started eating some solid foods, which has made a huge difference in my energy and strength. I am not ready to do downward dog, but at least I don't feel like living death. Still definitely nervous about reducing the prednisone and losing any progress I have made - I really hope I get a return call tomorrow morning.

Will keep you posted.

 

[billyjoel]

Hey there Magnolia soulangeana and welcome aboard. I probably cannot add much to what everyone else has already said here, but I do want to let you know that I believe you can get back to your active lifestyle of yoga and running. I was first diagnosed with Crohn's Disease over five years ago. I am 30 years old now and I run 4 or 5 days a week. I am very active, probably more active than most "healthy" people. I also am not having to take any Crohn's meds at the moment, with me being in remission.

Keep your head up, your body and digestive tract needs some time to heal and the immune system needs to settle down some, then you can focus on putting a plan together with your doc so that you can work out again and get to feeling better.

 

[CantRemember]

40 to 30 seems like a big jump? Most seem to taper by 5's. I would just keep food as simple, and low fiber, as possible until you figure out what you can and can't eat. Most of my fav veg things send me to the bathroom, and I'm quite the carnivore now by necessity. The known can't list is long... Legumes, salads, broccoli, cauliflower, raw veg of any kind. I've started drinking Orgain (like Ensure but I like the iced mocha and chic fudge flavors) for breakfast instead if cereal and have been doing a lot of omelettes. My friend's mom visited last month and made this awesome dal. So stupid me me says, "Well, it's really puréed so it might be ok?" Ouch ouch ouch. The next day, all day, I was cursing my bad decision making! Garbanzo beans seems to be ok if I remove the skins, and tofu also doesn't seem to bother me. Cheese is fine. But one thing I've seen on this forum is that everyone responds differently and has different food triggers. Just the part I liked best, salads and black beans and lentils, are definitely on my Big No list.
Hope the taper is successful and that you'll remain symptom free.

 

[Cozmo]

Hi Everyone,

Thanks for your support.

CantRemember - what foods did you have to give up? Did you find it hard to eat a mostly vegetarian diet post diagnosis? I know I have to wait to be done with the prednisone before experimenting, but I wouldn't mind suggestions of where to start.

Cozmo - it really does sound like we have a ton in common. I am thinking of you, too.

Steve - I hear you, I was struggling to run a mile at a time and couldn't figure out why it was so hard to breathe. Glad you are feeling better now! Hope you start lacing up your shoes soon. Let me know how it goes.

Well I have been on the 40mg of prednisone for two weeks now and am supposed to start tapering off of it tomorrow, switching to 30mg. Although the pain has (mostly) resolved, my other symptoms remain unchanged. I have been trying to get in touch with the GI dr to see if it still makes sense to taper, but between Thanksgiving and an unresponsive office staff, I haven't heard back yet. Thankfully, I have started eating some solid foods, which has made a huge difference in my energy and strength. I am not ready to do downward dog, but at least I don't feel like living death. Still definitely nervous about reducing the prednisone and losing any progress I have made - I really hope I get a return call tomorrow morning.

Will keep you posted.

Hi Magnolia,

I've just started my first reduction of prednisone today from 30mg to 25mg. My doctor wants to try me on weekly reductions of 5mg. Hope you go ok with your reduction, keep us posted on how its going.

 

[lizzy16]

Hi Magnolia,

Welcome to the forum! I also have Crohn's colitis and have been off and on Pred for the last year while trying to find a maintenance drug that will keep me in remission. It took a long, long time in the beginning for me to notice an improvement as the inflammation was quite severe with lots of bleeding. It took almost 8 months after diagnosis to come out of that first bad flare, I was on Pred that whole time and switched from Asacol to Azathioprine (unfortunately it seems the Aza still isn't maintaining after 6 months, I tend to flare as soon as I taper off the steroids. Humira is my next option, waiting 2 more weeks until I'm off Pred completely again and then I have to re-assess).

I'm glad the Pred is starting to make you feel well again! All I can say is that it does get better, even if it takes a long time, and that this forum is a really wonderful support network. I thought that my first flare would never end, and I'd feel that sick forever, but eventually I did return to my normal self and I've had periods of remission. Now when I do flare I'm straight on to my doctor (and usually straight back on Pred haha) and the disease doesn't have the chance to get to that awful stage again.

Good luck and keep us updated x

 

[Magnolia soulangeana]

After finally getting ahold of my doctor last Tuesday, he told me to come into the hospital. So I spent five days hooked up to IV antibiotics, steroids, and fluids. They had me NPO for the first two days, which was really tough, I started getting pretty food obsessed and then when they finally switched me over to soft solids I ate too much.

I was discharged last night, and although the bleeding and pain have diminished significantly, diarrhea is still frequent.

They put me back on Flagyl (along with Levaquin and Pred) - I am nervous about taking the Flagyl orally since it usually makes me vomit. I am taking an anti-nausea/vomiting drug with it, but still feel apprehensive.

The doctor seemed convinced I would be better pretty quickly, so that was my expectation too, and now I feel disapointed and angry.

Sorry for a depressing update! Hope all of you are doing well.

 

[Magnolia soulangeana]

Hi Magnolia,

I've just started my first reduction of prednisone today from 30mg to 25mg. My doctor wants to try me on weekly reductions of 5mg. Hope you go ok with your reduction, keep us posted on how its going.

Hi Cozmo,

Wondering how your pred taper is going?

 

[Cozmo]

Hi Magnolia,

Sounds like you've been going through the mill! Hope your starting to feel a bit better now though?

I'm just dropping down to 20mg pred tomorrow for the next week. I've branched out a bit with food tonight though and I'm regretting it a bit now, have ended up in bed with adominal pains.

One positive though is that I did get out for a 40minute run last friday, first one in 8weeks, it felt good, although it did take a couple of days to recover. Hope the Crohns will let me keep it up.

Keep us posted how your doing:hug:

 

[Pirate]

Hi Magnolia, gosh after reading your story I see we have a lot in common. I was quite sometime with the bleeding, diarreha, PAIN and waiting. I was also a distance runner in High School. 2 mile and cross country. I was pretty much surviving on IV drips, steriods and liquids (when they would stay down). X-rays, upper GIs, Cat-scans, and every thing else they could think of.
The prednisone helped me get back on track even though the bleeding still was happening but the pain was bareable. I have to have iron infusions a couple times a year.

This all started 26 yrs ago. I'm currently on Remicade and doing so much better. It does take time to get back to normal but you will get there.

I started running some a few years ago hoping to get to run a Mmarathon, but in 2008 I suffered a heart attack so that has been put on the back burner again. Hoping to start up again as the heart attack had nothing to do with my running.

Good luck with your recovery and hoping your back to running as before.