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Anyone else experience this???


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Old 05-04-2006, 07:27 AM   #1
Sharon76
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Anyone else experience this???

Hi

I am in the digestive board as i think what is wrong with me may be linked to me having crohn's, but im not too sure, so hopefully there are lots of you who can give opinions and advice on this illness which has never ending symptoms!!!

The last week or so this crohn's has been dragging me down, making me feel quite low, it seems that every other day i am getting other ailments.

The latest one is quite painful..........My skin and muscles in certain areas feel sore to touch, almost as if they are bruised but they are not. My neck, shoulders, down my spine and my hips are very sore and i feel like i have been kicked.

I cant make my mind up if its part of crohn's........ or side effects from my medication (prednisolone and asacol). Its getting me down because trying to sleep is quite painful as i cant get comfortable.

Any advice if you have any would be grateful. I am going to my doctors tonight so im going to have a chat to him.

 
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Old 05-05-2006, 04:17 AM   #2
Angela22F
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Re: Anyone else experience this???

Just bumping this up.

I was trying to avoid posting here, hoping you would get some positive feedback from someone who's been there...

In my honest opinion, I think I would link it with the Crohn's, as it can manifest itself in so many ways.

I hope you are feeling better today. What did your consultant have to say?

 
Old 05-05-2006, 04:37 AM   #3
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Re: Anyone else experience this???

Hi Angela, thanks for bumping it up, any advice it appreciated.

It wasnt my consultant it was my regular doctor. He ws none the wiser really as he is a general doctor and doesn't specialise in crohn's.

I want to come off the steriods, im having a bad time on them at the moment, i asked my doctor if i could and he said i need to ask my consultant which i am not seeing for weeks!!!

Im just fed up of the steriods, i dont like what they do to a person's body and the side effects are horrible. I have this constant horrible headache which is stopping me from sleeping and no tablet can shift it. My face feels all puffy and tight. Its a nightmare at the moment and my body feels bruised to touch. Im constantly tired but cant sleep.

Im on the verge of stopping the steriods myself and risking the flare up of crohn's again as i feel worse on the steriods.


To make things worse.......i think dairy makes my crohn's worse but at the mo i have a craving for cheese!!!!!! Driving me mad.

Here i go venting !!!! This crohn's is depressing at times though. What it does to a persons whole body is unbelievable. I really hope you haven't got crohn's Angela.

 
Old 05-05-2006, 05:12 AM   #4
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Re: Anyone else experience this???

Are you lactose intolerant? I haven't been properly diagnosed, my old GP told me to do the elimination and challenge thing - which I did - and it showed the intolerance that way. Funny that you mention cheese, as I was never a cheese lover, until I found out I was intolerant, now I crave it, but the smallest amount of lactose/dairy sends me in spins!

I have no proper knowledge on the steroids, so I don't really want to say too much about it. I do think though, that if you feel so horrible on them maybe you should quite taking them, or at least cut back, there are other ways to manage the Crohn's, and you have the 5-ASA's(I think you said you take mesalizine?) right?

And if the prednisone is having all those horrible side effects, would a different brand name/type work better? ie: hydrocortisone, betamethasone, tixacortol, budesonide? Just some questions maybe you could ask, as we know sometimes it's trial and error.

Some doctors treat with immunosuppressives too, but I don't think I would want to take any of those as they can open you up to a host of other problems.

CCFC has brochures that you can print on medications and side effects and such, after reading through, it sounds like what you are experiencing is a side effect of prednisone. Have you gone there and read through their brochures? maybe it would be worth sending your doctor to this site as well

I too am hoping i don't have Crohn's, I'm hoping it's something like a gastritis or something and a "true" arthritis - that I think would be easier to treat.

Big Healing *hugs* to you... Vent away!!!! We all need to sometimes, and I'll always "listen"

Last edited by Angela22F; 05-05-2006 at 05:14 AM.

 
Old 05-05-2006, 06:05 AM   #5
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Re: Anyone else experience this???

I havent a clue if im lactose intolerant, i just got told to eliminate dairy which i did, and if i eat dairy it aggravates my crohn's.

The problem i have is..........because my regular doctor isnt too well knowledged on crohn's he doesnt want to change my medication without my gastro specialist's advice first and he cant get hold of him yet and i cant see him yet. So, my doctor wants me to stay on these till then.

It looks like i will be stopping them myself for the time being.

 
Old 05-07-2006, 05:55 AM   #6
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Re: Anyone else experience this???

Hi Sharon

I had to take the same steriods as you for six months a couple of years ago. My side affects were not so bad as yours, but it was not plesant at all - feeling lathargic, constant sweating, not being able to concentrate, feeling bloated and red faced.....

Your gspecialist should be trying to get you off the steriods. Mine gave me an immunsuppresent which unfortunately did not work, but they do work in most cases.

Most GP's will not be as informed as you are so cannot really help. I thinbk that you should hot foot it back to your Gspecialist and talk options. Insist that this is not working.

Good luck

Mischa

 
Old 05-07-2006, 06:26 AM   #7
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Re: Anyone else experience this???

Hi Mischa

Thanks for the reply.

Unfotrunately im still waiting for an appointment to see my specialist, i have rang but am still waiting.

As you know and others, the steroids are meant to be used as a boost, not long term, long term useage should be avoided, but if the steroids aren't controlling it as well as it should then alternative meds should be used.

I decided to stop the steroids myself a few days ago, bad mistake. Since i stopped them i have been in agony, the crohn's has flared up again so im now back on them.

Im on 30mg of prednisolone (sp) plus 800mg of mesalasine (asacol) 3 times a day. And i cant understand why they are not working.

Im just fed up now, nothing seems to be helping to get it under control, i have tried changing my diet again, my GP will not touch my meds without discussion from the specialist so i just feel like i am left to sort it out myself at the moment.

For example, last night i had to sleep virtually sat up with 6 pillows just to try and ease some pain, then my sleep was constantly disturbed.

 
Old 05-07-2006, 08:00 AM   #8
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Re: Anyone else experience this???

I was in the same boat as you a couple of years ago. Every time I reduced below 30 mg of prednisolone it got worse. my Gspecialist then prescriped aziathiaprine (not sure I spelt this right) which takes 3 months before it is fully effective.

When you do see your specialist you might want to really push (I am sure that you would anyway) for tests just to check that there is nothing else wrong. I did not do this straight away and so it took a further 2 months of pain and suffering before we started tests.

Good luck

Mischa

 
Old 05-07-2006, 12:40 PM   #9
Sharon76
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Re: Anyone else experience this???

If you dont mind me asking Mischa, what was your original problem?

I have had lots of tests, each one showing up problems, apart from the barium enema of the large bowel, on my last test small bowel enema, this was when i was diagnosed with Crohn's. It took 10 months to get this diagnosis, i was hospitalised 3 three times, each time on IV fluids with my ESR levels sky high!!! I have been told that i will probably need to have a endoscopy done as the crohn's is in my distal ileum and small bowel.

I really thought that after a diagnosis it would start getting under control, but im realising that this is just the beginning.

 
Old 05-07-2006, 03:19 PM   #10
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Re: Anyone else experience this???

Hi Sharon

Crohn's disease is a life long disease. It sounds like you are having what I used to call a blip for a while where nothing seems to be going right with the disease and this effects other aspects of your life too.

I will happily tell you my story but while it may help you psychologically it will not help you physically as IBD was in my large bowel.

I was suffering for a few years, firstly with prostate problems and then later with bladder infections and finally with bowel blockages. Each time my symptoms were examined in isolation. The bowel blockages were the most serious effecting a small part of my large bowel (sigmoid section). I had all the usual tests and after a few months was diagnosed with Crohn's Colitis (Crohn's in the large bowel). I was told to take milk of magnesia and then when it was not working messalazine (not sue on spelling, trade name Pentasa) This seemed to work for about 6 months and then I would get a blockage go to A&E be given IV hydrocortisone (again not sure of spelling) and in 2 days would be fine again.

After the 3rd episode like this it did not get better after leaving hospital. I had to stay on at least 30 mg of Prednisolne otherwise i would get really constipated and have a blockage. After three months I was given Aziathiaprine and told to wait three months - so now I had been on the steroids for 6 months. At the point the new drugs should have been working (the were not) i discovered that I had a fistula (join) between my bowel and bladder (typical problem associated with Crohn's Colitis). The only fix was a large bowel resection. During the surgery they realised that I had massive inflammation on the outer walls of my bowel (not visible by any tests that look on the inside) and that my bowel, prostate and bladder were fused together. They managed to save my prostate and bladder, but removed the sigmoid section of my bowel along with most of my rectum (80%). I was given an iliostomy for six months and this was reversed in April 2005. Ironically the histology revealed that I did not have Crohn's disease at all, but instead a diverticular (pocket) had formed and then burst 5 years before causing all the symptoms.

I am now disease free which is really great, but I am still recuperating from all that has happened (mostly normal now).

I took some advice from other Crohn's sufferers at my darkest moments, which is i guess where you are now, and they all told me the same thing. It feels really bad now, but once you and your specialist find out what is going on it will be sorted. Most people i know with Crohn's (I only personally know 5 or 6) do end up having some surgery, but in all but one case surgery seems to resolve their problems long term. The other thing my Gspecialist always told me (about every 10 mins) was that there was no such thing as typical Crohn's and that everyone is effected and responds differently (I expect you hear the same)

It may be that you have a really persistent patch of inflammation that will need new drugs or maybe even a bit of surgery, but the good news is that small bowel surgery is fairly straight forward and has much quicker recovery times than large bowel ops.

I hope that this helps. What is your story?

Kind thoughts

Mischa

 
Old 05-08-2006, 12:14 AM   #11
Sharon76
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Re: Anyone else experience this???

Hi Mischa

My story..........it started last August properly, I would get sudden pains in my abdomen near my naval area, painful that they would make me lose my balance and take the wind out of me. I ignored it at first and just thought it was a bit of a stomach upset. A few weeks later my family and I went on holiday and i collapsed and was rushed to hospital. The hospital there done an x ray and said i was severly constipated which i couldnt understand as i was still going to the toilet. Anyway, they discharged me with no advice or care.

After this episode i spent the rest of the holiday in bed in horrible pain and came home a few days later. Once i got home the pain eased so again i didnt go to my GP. In September i got worse again, it started with pain again in the naval area, vomiting, unable to eat and huge weight loss. this time i went to my Gp who referred me a medical specialist, he tested me for addisons disease and was confused as to why my blood pressure had started to get incredible low. The test for addisons disease was negative.

Nothing else happened test wise.

In december i was rushed to hospital again with a twisted small bowel this time, everything went wrong.......I was catheterised due to my left kidney going wrong for some reason, was put on IV fluids, nil by mouth, put on morphine and confined to my bed for 9 days. Eventually the twist corrected itself and i was sent home, again no follow up treatment or knowledge as to why it happened.

4 weeks later i was back in hospital again with the same problem, this time i discharged myself after 5 days as no tests were being run on me.

6 weeks later i was back in hospital again this time with dilated loops in small bowel, and pain. again no tests were run, and all they done was keep asking if i have had any previous abdomen surgery which could have caused adhesions, i have not had any previous surgery.

Once i was discharged i went to see my Gp i paid private to see a consultant, eventually after a large bowel barium enema, ultrasound, x ray and a small bowel enema i was diagnosed with crohn's of the distal ileum and small bowel. The report stated " thickening of the small bowel wall with thickening of the distal ileum.....changes associated with crohn's disease"

4 weeks ago i started medication, the steroids and the mesalasine. I was also informed that with alot of crohns sufferers they need to find the right diet, i have tried everything but the only thing that doesnt set it off is soup! So it seems anything solid i eat aggravates it. Ive also started to dry wretch at times throughout the day.

One question that you may be able to help with...........one thing i cant understand is this..........every website i have been to for crohn's states that when complications set in such as bowel obstructions or twisting then surgery should be considered. I have had this on several occasions but yet they still wont operate on the affected part. Surely this would put an end to my pain and let me get on with life drug free for a temporary period?

Also because the crohn's has been left unmanaged for so long i have other complications........my left kidney is not functioning properly and i am having tests done on that as well to check how bad it is. I have been told this is due to the crohn's getting out of hand as it causes malfunctions in other organs close by, especailly the urinary system. Also i have developed low blood pressure because of the crohn's.



It is good to hear from others who are in/was in a similar situation and yes it helps mentally to try and get this thing sorted.

many thanks for your reply i really appreciate it.

 
Old 05-08-2006, 05:01 AM   #12
mt1971
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Re: Anyone else experience this???

Sharon

While I read your entry it brought back all that i have been through too. It is a really horrible place. you do have my deepest sympathy

I cannot really understand why gastro hospital departments are so poorly aware, and how you seem to have to be admitted at least three times before they even start to take you seriously!

My first flare up also occurred while on holiday - at the time it was the worst pain I had ever experienced. It took two further emergency visits to hospital over a period of three months before I was given a colonoscopy and a diagnosis. I fortunately had medical insurance, which has been a real blessing (I am not sure were you are from, but in the UK hospitals are pretty good, but if you have medical insurance you only have to wait days rather than weeks or months for consultations and treatment).

You said that your Crohn's is concentrated around your ileum (sorry again for my poor spelling). My understanding from having an ileostomy is that the ileum is where a significant amount of the absorption takes place (not a piece of gut to remove if you can help it), so this may be why your specialists are reluctant to get out their knifes just yet. They will probably want to be really sure of what the options are before they go removing vital organs.

I remember begging my Gspecialist to have been operated on as I was in so much pain and her response was, "we would never operate on the large bowel unless it was absolutely necessary". I really do understand what she meant now but at the time I would have gladly walked on hot coals for a brief respite. Of course small bowel procedures as I understand are must less intrusive and the recovery period much quicker

You are clearly in need of some major intervention, and that must surely be either different drugs or a surgical procedure. I have a really good family friend who has had Crohn's in the small bowel and was really suffering for years. She had a small section removed after 20 years of suffering and has not had a single sympton or taken any medication since (15 years ago).

One thing that you can do is ensure you have adequate pain relief. I was told that I could only take paracetomal up until I was diagnosed with the fistula. Just frankly I might as well have not taken it for all the good it did for me. However once i had my diagnosis they brought out the big pain relief guns .

I have written a few strings on my views on pain relief, but in short you should not be in pain. Ensure you get relief and in the UK the best drug in my opinion is Tramadol (a synthetically produced opiate which is non addictive and doesn't slow your bowel as much as other analgesics do). You can take it with paracetomal to increase the effects. Tramadol has been my saviour over the past 18 months without a doubt.

Hang in there Sharon. It can only get better from here on, and I am sure that you have now been through the worse of it.

kind thoughts

Mischa

 
Old 05-08-2006, 05:35 AM   #13
Sharon76
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Re: Anyone else experience this???

Mischa

I am in the UK and due to the waiting lists here i have paid private for some appointments just to try and get it sorted quicker. I am now waiting to see a new gastro, unfortunately i cant afford anymore private appoinments so i am having to wait.

About the surgery, ive had the risks explained to me but yet i am still wanting to get this op done so i can have a better quality of life. And yes to stop the pain and be able to eat normally. At the mo anything solid is aggravating it.

I was on tramadol myself but my GP took me off it with it being an opiate and slowing the bowel down. I then asked for alternative pain relief and he said paracetamol. This is really annoyed me and i asked him does he realise the pain that Crohn's causes and that paracetamol will not touch it. After this he put me on co codeamol, useless it isnt strong enough.

As soon as i can see my gastro im hoping things will improve, he can sort my pain relief, my medication and put in the right direction with regards to the future.

Now having Crohn's and realising how debilitating it can be and how painful, this is something i wouldn't wish on my worse enemy. It's a horrible disease.

Also you mentioned a fistula. Well i am having a test done on wednesday to find out if i have a fistula developing on my urinary system, my left kidney isnt working as well and it shrinking. Again, apparently this can happen with Crohn's. So i will have to wait another 2-3 weeks to get the results of that.

Also, i can not walk for long diatances as i start to get pain in my abdomen and stretching causes pain as well. Any ideas on whether this can be related to the Crohn's???

Thank you for your support.

Last edited by Sharon76; 05-08-2006 at 06:38 AM.

 
Old 05-08-2006, 08:06 AM   #14
mt1971
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Re: Anyone else experience this???

Sharon

Cocodemol is renowned for causing constipation and is also an opiate. You should try to avoid it. Another to avoid is ibroprofen as it irritates the bowel and in your condition should be totally avoided.

Tramadol will still cause some constipation, but not as much as the cocodemol, and it is a stronger pain reliever. Your GP is right to say the paracetomal will not slow the bowel, but in my opinion he is wrong to take you off the tramadol. You sound like you need it so get back on the Tramadol and if it does not take all the pain away take 2x paracetomal with it too. Once you get the pain under control things will not seem quite so bad. If you are worried about the tramadol slowing your bowel, then do something else to compensate like taking a few short walks each day as this will stimulate the bowel.

You whole body is struggling right now, so there are bound to be many things that do not work as you expect - I am sure that stretching is one if these. Walking will stimulate the bowel and as yours is very sore it is bound to make you feel a bit worse. I would still try to walk but when it starts hurting stop and rest. I find a hot bath will sooth any discomfort and during my worst time would have 4 - 5 a day. Baths are particularly good when you are waiting for a painkiller to do its work!

Take it easy and be kind to yourself. It is really easy to blame your body and push it when it lets you down. I did it myself for months and in fact it has taken a year of counselling to realise this. Now I try to think as my body and mind a two separate entities that make up me, and I have to invest love and attention on them both - sounds a bit pie in the sky I know and it may not be your cup of tea, but the message is fairly sound!

Get back on the tramadol, be kind to yourself and have lots of baths, and a few gentle walks Thatís my advice for today!

Take care

Mischa

 
Old 05-09-2006, 03:31 AM   #15
Sharon76
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Re: Anyone else experience this???

Many thanks for your advice and support, i really appreciate you taking time to reply.

Like i said it does help hearing from others who have been through similar situations, almost gives a person a second wind to keep going and get it sorted out properly.

As soon as i start having more good days than bad days i know that i will be on my way to getting his thing under control.

It's just difficult a times, i have a hectic lifestyle, and trying to keep up with that as well as the Crohn's is a struggle at times. But I will get there eventually.

 
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