Mild Crohns

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Racheld

Racheld

Joined
Jun 29, 2012
Messages
48
Hi,
I am now to forums, so bare with me. In March this year I was sent by my GP to hospital with right side pain, backache, fever & upset stomach query an appendix / ovarian cycst. After 12 hours and out ruling them I was discharged with co-codamol & buscapan and advised to get my "IBS" wich I have had since my teens checked out. My GP then referred me to a GI who found swelling and tenderness near my appendix, sent me off for ultrascan, bloods, celiac test & colonoscopy, and camera pill. The colonoscopy, scan & bloods where ok, but the camera pill showed several small ulcers and I have been started on a 6 week reducing entocort course. Now I am at the end of week 2 the rightside pain has started to come back. Yesterday the duty GP said I should not be having symptoms whilst on a high dose of entocort, and has put me on lansoprozole for my indigestion & heartburn with more co-codamol. She mentioned I have a mixture of ibs & crohns symptoms but I didn't think you could have both.

confused & frustrated
 
Hi Rachel and welcome :)

I'm so sorry you're having pain again :( That must be so frustrating.

Maybe the entocort just isn't the right drug for you? Not everyone responds as hoped to it. Has your GI suggested other treatment options or maybe something in addition to the entocort? Are you familiar with enteral nutrition?

It's great having you here!
 
Thank you for the welcome,

Tomorrow I start week 3 and drop to 2 entocort a day for two weeks. I am not due to see the GI again until Aug at the end of the 6 week course. It wasn't explained very well if I could still take my old "IBS" drugs mebeverine, lansoprozal & buscopan, now I am on the Entocort. The only change I have so far is my system has slowed right down which I am not used to!! Thought it might be partly due to the codine so trying paracetamol only today.
 
Hello Racheld,
Good to meet you and glad you have joined the forum.,you have just met David, one of the most knowledgeable people especially with regard to IBD .
There will be other members along I am sure to offer their experiences.
IBS and IBD do co exist and I am someone with both.Although since the Crohn's diagnosis my symptoms have been mainly Crohn's.
People are sometimes mis diagnosed with IBS when it is really IBD and this may vary according to the knowledge and experience of the doctor.
If you are receiving treatment and still having problems, it may need adjustment of your therapy and really you should let the GI specialist know about it.
Or at least try for an earlier appointment as David has suggested.
Feel better soon
Hugs and best wishes
Trysha
 
I called my GI yesterday He reassured me the GP's are aware of how to treat me as he put it all in my notes to them. He has increased my Lansoprazole 30mg to twice a day breakfast & dinner. Then use gaviscon if needed in between. I am to keep on with the tapering but if the symptoms don't settle down then he will add something else. Today I am back to my arms aching as if I have been doing some labour.

Thanks again for the support
 
All change apparently I cannot be on lansoprazole 30mg twice a day according to to the locum GP, so now on omeprazole 20mg twice daily. I am on my last tapering stage of the enotcort last night the "dodgy corner" pain was back yesterday evening and this morning I woke at 5am with leg cramps, which have continued on and off through the day, loo trip no 6 so not doing well. I don't feel that hungry just thirsty. Due to see GI in August 2 weeks after finishing the trial.
 
Thanks David, I am keeping a diary of how each taper has gone, but at the moment I feel like I am back at the start with the symptoms. The earliest appointment I can get is the one in August.
 
An update, I have been back to the GI after completing the entocort trial. As my BM slowed right down with some form, he has considered the trial a success, and this confirms his thoughts on mild crohns but still doesn't want to label me with it yet. I was told the heartburn is a seperate condition not connected and I am too young (42) to be having issues with acid reflux. Next course of action is to trial a month with cutting down on cowes milk & wheat to give my gut a rest. Then maybe trying pentesa. I am to keep taking painkillers as needed and keep a diary, let him know at the end of the month if the "diet" worked.
 
If you eliminate cows milk or any milk from your diet you will notice benefits. It definately helped me.
 
Just to update following a rough weekend last month I am back on a 2nd entocort course, I completed my first 2 weeks and started tapering today. GI still says I have too many symptoms to be "mild", and he is reluctant to start pentasa, as it involves lots of blood works & monitoring. He may consider it when I am upto needing 3 entocort courses a year. In the meantime my GP is trying to resolve the "other" symptoms, I have been having an aching pain in my right shoulder. My burning/stinging pain has moved from the lrq to the urq and sometimes in the left too. I had bloods done last week with the GP so awaiting the results. GP agrees with the GI because he is the "expert"..
 
Hi Rachel,

I was just diagnosed with Crohns and Acid Reflux and I'm 40. Not sure why he would say you were too young for it. I was put on Prilosec twice a day for the acid reflux because I had sores in my esophagus from having it ALL THE TIME. It wouldn't matter if I water.


Good Luck and keep us updated!
 
New pain after completing entocort

I have been having pain again 2 weeks since completing my last entocort course. This time the pain is around my navel and to the right side of it, not as low down as before. I have had an ultrasound scan to eliminate "other" causes. The pains start a few hours after eating during the day, then early evening through the night. Today I have not been able to pass very small (peanut size) single dark hard stools, this odd for me as I am normally the other way. I don't feel like eating either. My right shoulder had also been sore and aching every day. I have also been having trouble getting to sleep with the shoulder & tummy pain :( any advice appreciated.
 
Sorry to hear about your troubles :(
is it possible you are starting to have a bowel obstruction? or the walls of your intestines are narrowing?
 
Have you seen a Rheumotologist for your shoulder and other joint pain.?They can be signs of extra intestinal manifestations.
As far as too young for reflux ( trying not to laugh )
My 9 year was dx with reflux at age 6 . I don't think there is an age limit.
Hope you get relief soon.
 
Hi Racheld, I have pain in the same area around the navel & to the right on occasion when the Crohn's is becoming active. Usually after eating something that just overloads your digestive system. Its so difficult at times to always eat the right foods. Also with Milk you must completely stop drinking it if you want to see best results. Milk will throw me into a full blown flareup if I drink it, even the lactose free milk. There are studies showing that milk is a problem for someone with digestive problems. I recently started using "Almond Milk" as a substitute for milk. Takes some getting used to. Here is a link on milk study.

http://www.sciencedaily.com/releases/2007/12/071210104002.htm

Keep in mind also that since much of your immune system is in your intestines, that you will you will just feel sick all over at times when Crohn's is active. Probiotics have also helped many people with Crohn's. I use "Valerian" caps to help me relax and sleep better. Its not a prescription med so its not strong but a mild sleep aid. Hope things start getting better for you.
 
Thanks again for your support. The last time I spoke with my GI he wanted to wait until I need more than 3 entocort courses in a year before he puts me on a maintenance drug. My GP seems to support this. I mentioned my ongoing shoulder pain and I am no further forward. Last night it kept me awake again. I am trying to get an appointment with both the GI & GP this week..
 
That's an interesting way to treat things. Admittedly I am concerned about the buildup of scar tissue due to chronic inflammation potentially being present and a lack of mucosal healing (one study showed Entocort only had a 20% rate of inducing mucosal healing), but if you're comfortable with the treatment, that's fine. If you're NOT comfortable with the treatment, discuss that with your GI or get a second opinion.
 
Hi Racheld,
Do hope you get under control soon. The pain is hard to work through. Have you tried a heating pad, hot water bottle or electric blanket to help with it? Also, if you are comfortable with the Entocort® and feel it is beneficial initially, then decreases effectiveness upon taper, have you spoke to your doc about the extended treatment with it? There are studies of 6 months on ( with taper starting in 3 rd month) then 6 months off. A longer course may help, again, if you are comfortable with it. I had to do 5 months at 9 mg ( 3 caps) a day b/c when i started taper, flare started back with a vengeance. I was able to taper down just fine in 6 th month, however. But, we are all different, and it is perceived as what we are comfortable with in the end. No one knows our bodies better than we do. Thus, it's important to listen to it :). Good luck. Muah- hugs-
 
I love my hot water bottle, we are ok to use one at work as well. My GI is on holiday, if I am still in pain by the 6th Dec, then I can get an appointment. Today I had an asthma attack.. not sure what triggered it off, just woke up like it.
 
I had an ultrasound scan the other week to out rule "other causes" for the shoulder pain, I should get the results next Monday. Thanks again for your advice & support
 
Racheld, If you're still having stomach or intestinal pain you might want to try ALOE VERA gel or juice. When I was having acute intestinal pain years back I would take a half cup of Aloe Gel or Juice, within the hour the pain would subside. Also as a maintainance I would drink it daily if I was still flaring & once I started feeling better I would taper to weekly.
Aloe has healing properties just like when it is used for burns, the scars almost dissappear after the skin heals up. I have seen this with my own eyes with relatives when they were burned. ALOE VERA is also a NATURAL ANTI-INFLAMMATORY. I have used this for over 20yrs., along with diet & other natural medicine, to help minimize the symptoms of Crohn's. I did notice best results with the fresh gel mixed in water from fresh cut leaves. I used store bought juice before I was able to get some plants. Also there are plant varieties that are not bitter and have little to no taste. It couldn't hurt to try Aloe.
 
Quick update, I am being referred by my GP to the GI team at our local hospital. He feels I need more support. Also the GP want's to keep checking up with me on a monthly basis whilst we get the pain and other symptoms under control. Good start to 2013
 
My girlfriend was diagnosed in 2006 with Crohns and thinks she not take any meds and just have a good diet any thoughts? she has had one fistula back in 07
 
I was diagnosed in March last year, I know I am not managing on diet alone. Each flare has been more unpredictable even when watching what I eat. My GP is now bringing forward my hospital appointment, so I can be given more support. With not being on meds I wonder how much more damage is being done each time I flare up.
 
Hello Racheld, Have you had a chance to try the Aloe Vera Juice yet. I used to drink 1/2 cup 3 times a day when I was hurting. It really take away pain & helps in the healing process.
 
the private GI put me on the pentasa, so far I am ok. Just had some pain today & been really tired. I have been back at work this week too, so far I am coping
 
Remember that if you have any ammount of pain or tiredness it means the crohns is still active. Also remember that our bodies survive on what nutritional support we give it. You really should try the Aloe Juice you wont regret it.
 
If you cant find a health food store. you can try yo buy it online , or you can look for a friend who has a Aloe plant with large leaves & mix the gel with juice or water to make it more palatable
 
Rachel,

I'm not a huge fan of Pentasa for Crohn's disease though I pray that it does the trick for you. The data isn't all that good for it but it no doubt helps some. The reason I'm mentioning this is if it doesn't seem to be doing the trick, don't suffer through it. Advocate for yourself and make them try something a little stronger. But hopefully the Pentasa gets things under control for you.
 
Thanks David, So far I have been ok, very tired, some nausea. I still don't have an appitite and tonight some of the the pain is back again.

I have my NHS appointment on the 6th Feb, so I looked him up and found he is also on the same "private" team as my current private GI. Will let u know how it goes.
 
Last edited:
A year on and there has been loads of changes. I am currently going through a divorce got my hearing on Tuesday. This has meant another change in consultant. I am now under St Marys Hospital I.O.W. I have been given an IBD nurse as well. Just need to a calopractyn test and barium xray.
 
Had a rash appear on my ankles, lower leg & wrists any ideas?? I have uploaded some photos. They started out as flat red circles then developed into bumps like a nettle rash some even formed blisters
 

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