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ErnieElse

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Jan 6, 2017
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Hi All,

My brief story (45 yo male) ....

Last February I developed stomach cramps for a week then vomited much worse than I've ever vomited before. I immediately felt better afterwards so put it down to food poisoning.

Two months later I awoke one morning with intense stomach cramps inducing some vomitting later that afternoon and immediately felt fine afterwards. Clearly it isn't food poisoning so I needed to see my GP.

Over the next few months I had CRP blood tests and Fecal Calprotectin tests both indicating inflammation. Most of the time I had very low level pain across my lower abdomen but no abnormal bowel movements.

Then in September I had a colonoscopy showing a perfect Colon but inflammation in Terminal Ileum. Biopsies did not definitively indicate Crohn's but the GI doctors are certain that is what I've got.

Next in November I had an MRI to study how far up my small intestine the inflammation goes, and while I waited for the results I am prescribed an 8 week course of steroids. These reduced my very low level discomfort to zero but it returned once the course is over. The discomfort remains at very low level and I am aware of it about 70% of the time.

Today I got my MRI results which shows some thickening/inflammation over the bottom 12 inches of my Ileum, no fistulas, some puss-filled something's and an absolutely definitive diagnosis of Crohn's. The GI doctor wants me to start on Immunosuppressants for life !!! I feel absolutely fine with a minor discomfort about 70% of the time, no discomfort the rest of the time and no abnormal bowel movements at all, so I decide not to start down the Immunosuppressant route immediately.

That is where I am. Can anybody offer me any advice on my situation and in particular whether I should start down the route advised by my doctor (which terrifies me). He was very quick to get me on steroids so I'm a bit concerned that he is too quick to prescribe. But then he is the expert ... Also I'm considering getting a second opinion, not on diagnosis but rather on treatment.

Thanks for reading this far. Any comments very much appreciated.

Ernie
 
Did the GI formally classify your Crohn's as mild? Mild Crohn's is often treated differently from moderate or severe. Current thinking is that moderate/severe needs to be treated from the top down (i.e. hit it with the most powerful drugs first to prevent the accumulation of tissue damage), but mild disease is treated from the bottom up - i.e. start with the mildest drugs and move up as the symptoms warrant.

Mild Crohn’s disease is classified as those patients who are ambulatory, with <10 % weight loss, are eating and drinking, without abdominal mass, tenderness, obstructive symptoms, or fever, and endoscopically they have
non-progressive mild findings.

In your favor are the mild symptoms and the fact that you were diagnosed at age >40. Both of these put you in a lower risk group. But on the troubling side are the apparent abscesses and the fact of 12 inches of small bowel involvement.

No diarrhea does not necessarily mean no or mild disease when the CD is confined to ileum, because ileal Crohn's often produces no diarrhea and in fact may produce constipation.

If your disease would hold still where it is now you would clearly be fine with no therapy. But in nearly all cases CD has an annoying tendency to get worse as time goes by. In light of the abscesses, IMO going on azathioprine would be a good idea for you. The risk of something bad happening from azathioprine is very low. The risk of something bad happening from untreated Crohn's is very high.
 
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Hi. I am sorry you have Crohns. Whether it is steroids or some other !medicine , yoiu need go on medicine. Left untreated the disease could get worse. A second opinion wouldn't hurt.
 
Thanks Scipio,

No the GI didn't classify me either way.

I guess that's why I am confused - to me it feels very mild and so each time I have met the GI doctor I have hoped he would say "go away and come back in six months to see how you are then". But he hasn't been like that at all. The last time I saw him it was "take these steroids" and today it is "start on immunosuppressants for life". All the while I am feeling fine.

I cannot fault the various procedures carried out on me over the last nine months and they have allowed a very accurate diagnosis. But where I am feeling a little short-changed is in the time the GI doctor has given me in explaining just how serious or otherwise my condition is, hence my uncertainty about the necessity of starting lifelong immunosuppressants.

Maybe my confusion is because I can't imagine it getting any worse than it is now so just want to get on with life. Whereas his experience tells him that it needs treating to stop it becoming a major problem in the future.

Ernie
 
Hello,

For my personal experience the risks of untreated Crohn's have outweighed the risks of taking azathioprine. I started out getting stomach cramps that would last a few days and then once they cleared (like you, sometimes with vomiting) I felt absolutely fine. This process went on for 5 years and I never had any testing or was referred to a gastroenterologist in that time. My symptoms were written off as IBS as I did not have any classic Crohn's symptoms like diahorrea I guess. Then out the blue one day I awoke to horrific pain and fevers. Several hospital trips and a colonoscopy later revealed I had Crohn's disease and my ileum had perforated. I had to have an emergency bowel resection to fix it. I look back and wish I had been more persistent with my doctors when I used to get those cramps as an earlier diagnosis and treatment may have prevented that awful episode. I would probably take almost anything to prevent that happening to me again.

The cramps you are describing sounds like a partial small bowel obstruction. This is the leading cause for Crohn's surgical resections and perforations. Personally I would be very wary of them. Maybe search the forum for more posts of people's experience of them.

The weaker drug of choice would be pentasa or sulfasalazine but these are not usually effective in Crohn's disease because they only coat the top layer of the bowel. However Crohn's inflammation goes through all the bowel layers. I am also not sure if they are actually FDA approved as a maintanence therapy for Crohn's either.
 
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Hi Eleanor,

I am in Doncaster so only a few miles up the road from you :) Thanks for explaining your situation.

Like you say, with my recent diagnosis of Crohn's I am now attributing both of my cramping and vomiting episodes as being due to some sort of small bowel obstruction. I have never experienced vomiting like the first episode (Feb 2016) and the cramps were very severe for a few hours during the second episode (Apr 2016). But since then (9 months) I have been fine with this very very low level discomfort felt most but not all the time.

It just feels such a pain to be forced into taking immunosuppressants every day forever with all their side-effects, regular blood monitoring and increased infection risks purely in an attempt to stop a future obstruction that may never happen. But as you say I guess these episodes happen out of the blue so feeling fine now is no guarantee at all.

In Doncaster they don't seem to prescribe 5 ASA's at all for Crohn's saying that they have zero benefit. Regular steroid use is not an option so it is either immunosuppressants or something called Biologics which I need to research.

I guess if I had endured five years of problems like you then I would have sufficient evidence that something needs to be done. But at the moment I feel it might be a little premature. I really need some advice from a couple of different GI doctors to see if there is unanimity in the best course of action. I just want them to say "monitor it and if you have any more severe episodes or the day-to-day pain gets worse then we will revisit". But right now my GI doctor is acting as though he's seen more than enough to be convinced that permanent treatment maybe for the next 30-40 years is required. Rather scary.

Ernie
 
Hi Ernie,

Yes I didn't always experience vomiting either. In fact, even during one of the worst "cramps episode" that I ever had did not end in vomiting. I also could go for months on end without having an episode. I guess the problem is, things can escalate quickly, and if that happens for you, no amount of medication may be able to pull you back. I really wouldn't recommend surgery except for life-threatening situations, or where quality of life is extremely poor. You don't want to end up on that boat. You may be able to get away with taking a very low dose of immunosuppressants. I myself am only on 50mg of azathioprine, which is virtually unheard of on this forum. To be honest though I feel I need to increase because due to my diagnosis being retracted after my surgery, and then subsequently re-diagnosed 4 years after that, I seem to have started medication too late.

In my opinion, if you are having bowel obstructions then they should be dealt with urgently and I wouldn't see it as premature. If you on the otherhand, were just having the odd episodes of diarrhea, then I would probably tend to agree with you that err-ing on the side of caution (given your age at diagnosis) would be the best way forward. The risks associated with obstructions are significant and life-threatening.
 
Hi Eleanor,

Thanks again. It is interesting to hear that 50mg of azathioprine is considered a low dose as I have no idea of doses. If I were to start down that route I would certainly insist at starting on as low a dose as possible.

Do you ever experience any side effects ? I am already susceptible to the odd cold in winter so hate the idea that I might get them more regularly. Similarly I love the sunshine and spend 3 months per year in Spain so hate the thought that I might have to stay away from the sun !!!

The long and short of all these very friendly and informative replies seems to be that everything must be done to avoid any possible future small bowel blockages. So even though I have no real symptoms worth talking about at present I should still start on the meds. I shall bear this in mind.

Ernie
 
Hi Ernie,

Well I am 27 years old, currently a PhD student so the biggest issue for me is other students drinking. On occasions I have ended up going on a binge and then I pay for it afterwards. The hangovers are much worse (although I always had awful hangovers). I try to avoid alcohol as much as possible now as I find that is what leads me to getting colds/ill (specifically binge drinking until 3am). Although recently I have been out and not become ill after, maybe I am getting used to it more. Still, I don't think it's worth it. I am actually writing this now with a stinking cold but that's because my boyfriend got a cold and gave it to me. I may have got it anyway from him, even without the immune suppressants as he kept kissing me and we were sharing drinks. I think if you take proper precautions though you can avoid things like that. I have sat next to people on trains daily sniveling and coughing and never got anything. Get the yearly flu jab and pneumonia jab.

Sunshine - yes this is a big thing for me also. I wear factor 50 everyday on all exposed body parts. It sucks :-( I love travelling and lying in the sun as well but haven't done it this year since starting on these meds. Unfortunately with this diagnosis our lives change and there is a grieving process that I am still not through. I have thoughts everyday "why me?", everyone around me appears to be healthy leading full lives and I just feel hard done by. But I will sacrifice my sunshine if it means I can feel healthy and normal in remission, and if it means I don't have to lie in hospital beds waiting to be cut open, not knowing whether I am going to wake up to a bag, or at all.
 
ErnieElse said:
Hi Eleanor,

Thanks again. It is interesting to hear that 50mg of azathioprine is considered a low dose as I have no idea of doses. If I were to start down that route I would certainly insist at starting on as low a dose as possible.

Do you ever experience any side effects ? I am already susceptible to the odd cold in winter so hate the idea that I might get them more regularly. Similarly I love the sunshine and spend 3 months per year in Spain so hate the thought that I might have to stay away from the sun !!!

The long and short of all these very friendly and informative replies seems to be that everything must be done to avoid any possible future small bowel blockages. So even though I have no real symptoms worth talking about at present I should still start on the meds. I shall bear this in mind.

Ernie
Click to expand...

I was on 100 mg of azathioprine but in the last couple of years they cut me down to 50.
 
Thanks once again everybody.

Eleanor, I can only offer my sympathies and wish you well. I am so shocked by what you say about factor 50 every day, even in not-so-sunny Nottingham. If this is necessary even on low doses of azathioprine then I am extremely concerned. I have a second home in Spain for goodness sake .. !!?? :(

I'm also very cynical about the annual flu jab as family members seem to fall ill like flies every year after they go for the jab. It wouldn't be something I would be happy with.

On a brighter note, enjoy your PhD studies. It is 20 years since I got mine and I look back on that time very fondly. I also remember the hangovers from that time too. Not fun .... But being 27 is much better than being 45. Have a great time.

I remain very sceptical about starting on immunosuppressants and am tempted to take my chances for now. I desperately need some expert advice and will probably end up paying for a couple of independent private consultations with some Crohn's specialists to get some independent opinions on treatment.

Ernie
 
Hi. I'm 32 and live in doncaster :) I've been on immune suppression medication for 2 years. I have a 15 year old and 2 year old twins whom constantly catch colds and god knows what..in all honesty I have no side effects and don't really to now touch wood catch what they have . I know each person is different but for me it's the only medication that has put me in remission. I know in doncaster those medications are prescribed last due to the cost of the medication so I was pleased being offered them. But just because they want to put you on them doesn't mean you will have to be on them for life ??? They may not even work so they may have to try an alternative route. Currently I'm awaiting an appointment with my surgeon due to a stricture that is causing all my problems! If you don't get on top and try to get into remission the more risk of scarred tissue and ending up having to possibly have some form of surgery. I personally would have preferred to have been on this medication and put in remission sooner than leave it this late to have to now go through possible surgery. They prescribed steroids straight await to settle the crohns. Other medication is to try to keep the crohns at bay rather than settle the crohns
Hope it helps a little
Debbie
 
Hi Debbie,

Thanks for taking the time to reply. Small world :)

My uncertainty about going down the immunosuppressant route is because I feel like I have now been in remission for 9 months following my only two flares which caused me to go to the GP in the first place.

I am categorising the term remission as being a steady state of very low level "gripe/cramp" type pain, no abnormal bowel movements, eat like a horse, exercise fine etc. Perhaps others would say that any symptoms at all do not constitute remission so I would be interested whether others agree that I sound like I am currently in remission ?

For all I know my current state could last a lifetime without any treatment. I feel my decision about meds would be made infinitely clearer were I to have another flare after this length of time but right now it is an open-ended situation for me. Hence I feel like waiting to see what happens next before taking serious meds. One more flare and my decision would be made.

On a different topic, how do you find the team at Doncaster ? I have been extremely impressed with the Endoscopy and MRI procedures I have received but have been rather less happy with the time I have been given with the GI doctor to explain the results of these procedures and the best course of action. All I want is 10 minutes with him when he isn't rushed and doesn't talk to me like I'm an idiot.

My MRI results were incredibly detailed (30cm of this, 28 cm of that, 3cm of something else, no fistulas, two small abscesses ....) but he barely read them as he was busy elsewhere. Any abnormalities at all were sufficient for him for tell me and the nurse to start on immunosuppressant's immediately as he walked straight out the door ....

I need more information on the specifics of my case. What meds are you on ?

Thanks again for the reply.

Ernie
 
Hi Ernie.

I was diagnosed with Crohns in 2010 at age 47. When I was about 41 years old I had 6 trips to the emergency department for abdominal pain. The GI I went to at the time did only one test, a colonoscopy, and ordered some blood tests. The scope showed a healthy colon, but for some reason the GI could not get the scope into the terminal ileum. The GI told me that I had IBS. I went 6 years without a proper diagnosis, and I did not have another bowel obstruction until 6 years later. I went untreated for that time. In 2010 I had a bowel obstruction, with horrible pain. The ER doc took a CT scan and told me I had Crohns. I went to a new GI and, after running every test under the sun, confirmed the Crohns diagnosis. I had a abdominal mass, and had to have surgery. The surgeon removed about 3 ft of the small bowel and 6 inches of the colon.

Crohns can and does get worse over time when it is not treated. I really recommend the you find out if your case is mild or not, and then get on treatment for it. My condition was so severe. The opening through my mass was only the width of a pea. After the surgery, my surgeon told me I am lucky to be alive. If I had been able to start the correct treatment 6 years earlier, things would not have gotten so out of control. Maybe I would have avoided surgery.
 
Hi Doug,

Thanks very much for the reply. Your story is clearly very relevant to my situation. Can you remember how you felt for the six years between flares ?

The more I hear the less satisfied I am with my GI. I have had really great treatment to achieve my diagnosis but it feels like they haven't finished the job by fully explaining what I've actually got and what are the alternatives going forward !! I need to fix this asap.

Reading online it does appear that some people are taking 5 ASA's for Crohns and some have even had success with antibiotics. Is anyone on here able to comment about these options ? If possible I really would like to try both these routes before accepting the stronger meds so would be interested to hear of any such experiences.

On another note, what sort of CRP blood test levels do people record when flaring and when in remission ? I was told by the GI nurse that a score under 5 was normal and that I was currently at 13 with a high of 22 back in April. I am just curious how relatively high or low these readings are compared to people currently suffering more severely than me ?

Thanks again to everyone on this thread. It is starting to help me come to terms with my situation :(

Ernie
 
If you have any questions at doncaster they have a team of ibd nurses. Personally I find them amazing !!! If I was you I'd give them a call and they can tell you everything. They get your ntoes up and can read from every letter while your on the phone. Anything they aren't sure on they nip and speak to your specialist and find outand get back to you. They have never ever took longer than 24 hours to get back to me Ernie. When I've felt like you are confused etc I've just gave them a call. They are so understanding.. why not call them and express your feelings. They may suggest anoher meeting with someone to explain things better and help with more options...? Doncaster 642863 is the direct call of you haven't already been given the number.
Debbie x
 
Thanks Debbie. I already have the IBD nurse contact details so will be composing a short email to them later today. I spoke with one of them on Friday for 15 minutes and she was great but sometimes an email with a list of specific questions gets across more information more quickly and with less confusion and emotion.

I really don't want to criticise the setup at Doncaster because they have been really great with the diagnostic tests. I'm sure within the next week or two I shall also get the severity, treatment and outlook information I am looking for from them so that I will be totally clear on everything. I'm just a little confused and impatient right now ....

Then, knowing me I shall also end up researching and paying for a separate private consultation elsewhere in South Yorkshire or maybe Leeds or Nottingham to get a second top expert opinion on it all before proceeding.

As you can see, I'm not the sort to just take what I am told at face value :)

Ernie
 
Completely understand. Especially when they haven't been very helpful in regArds to sitting you done and explaining.it's a big life change and your bound to have a million questions, I have found some days are good days to catch them others they are rushed and just want you out he room! But I have been going to them for 7 years so plenty of experience with them, but even now it's alot to get your head round woth new meds and new symptoms . Also it's a shame you never see one of the same person.. I've seen so many different people it would be much nicer to have the one dedicated specialist you could then feel comfortable with.. and suffered for 17 years and only then was I diagnosed when rushed in with a kidney infection. Keep us posted hoe it all goes !
 
Hi Eleanor,

Those links are awesome and will need careful studying.

Based on the second link I am very clearly in the Mild to Moderate category. I can eat like a horse, I have some abdominal pain but it could hardly be described as severe, my bowel habits are fine, and I have signs of active disease by both labs and imaging.

The first link is fascinating as it shows how contradictory the evidence is, and just how person-specific the optimal treatments are. Medical science seems adamant that Mesalamine / 5 ASA is not suitable for Crohn's due to it only soothing the top bowel layers whereas the condition affects all bowel layers. But then there are Crohn's sufferers for whom it seems to work even to the extent of reducing their Calprotectin levels below 15 in one particular case on that thread !! And there are doctors who are open-minded enough to say "if it works for you then go for it".

From my perspective, I really don't understand why I shouldn't be given the chance of Mesalamine for a period of time before getting the big drugs out. Similarly I don't know why I shouldn't be given the option of a course of strong antibiotics to see if that has any effect, as I have a strong feeling that my problems all started from a bacterial infection when overseas about three years ago.

As regards lab test results, I would really appreciate people's thoughts on my CRP and Calprotectin levels. I have so far had four CRP tests, my levels were 23 back in April and flat-lining at 13 between September and November. I was told below 5 is normal, so how do these look ? Just how high is 13 ?

As for Calprotectin, I had two tests in the April to June period (following the second of my two flares) and both came in around 200 when below 50 is normal (although now I read on one of the threads linked above that some doctors are even relaxed up to the 200 level !?). I don't know what my current level would be but I feel about the same as back then so would guess it might be around 200 given my drop in CRP since then.

Yet I read of people with Calprotectin levels in the thousands and I wonder if I am really poorly enough to warrant the sledge hammer that are immunosuppressants ....

Thanks again for the links. Really awesome thread for which I am VERY grateful.

Ernie
 
Today I have bought good quality, high dose vitamin B12, Magnesium, Zinc, Folic acid with added vitamin D3 and Omega 3 fish oil with added vitamin D3. How does this lot look :)

I have also contacted my GI team to see if I can be considered for separate courses of Mesalamine and strong antibiotics if only to discount them as worthless. I am not ready to start on Azathioprine until other options have been tried and failed. I await their reply.

Ernie
 
Which steroid were you given? Probably either Budesonide (Entocort) or prednisone.

Budesonide seems more relevant to your case, since it's action is specific to the ileal region of the small bowel, and its side effects are minimized due to rapid removal from the blood by the liver. I'm asking because it might be useful to ask your GI to consider another round of budesonide to induce the remission and then bring on the mesalamine and/or antibiotic to maintain it.

IMO that might stand a better chance of success than hoping that the relatively weak maintenance drugs you are proposing in place of azathioprine can also successfully induce remission to begin with. In most cases you have to whack the Crohn's harder for induction than you do for maintenance.
 
Hey Ernie, I don't know what any of my blood tests show except that for the past year they are always in the normal range. I do know that when I had a perforated bowel, an abscess and was septic and near death requiring emergency surgery my CRP was 58 and my white blood cell count was elevated but don't know what is was. I was told a fecal calproctectin result above 200 is cause for concern. Where you read about people having it in the thousands - this is likely due to them having inflammation lower down (such as in the colon). I know a guy on here with Crohn's in his duodenum and his fecal calproctectin was 32, but he was really rather unwell.
Here is a history of my fecal calproctectin results and other results:

Sept 2015: fecal calproctectin - 65
October 2015: CT scan - normal
December 2015: colonoscopy - ulcers at terminal ileum, small bowel looked withered
April 2016: fecal calproctectin - 70
July 2016: fecal calproctectin - 60
September 2016: fecal calproctectin - 142
September 2016 - MRI scan with contrast - normal
December 2016: fecal calproctectin - 72
All blood tests between then and now - normal

I currently feel like crap though so my results really don't mirror how I feel (aside from the colonoscopy which was enlightening). Conversely before my bowel perforated I felt pretty much well just tired. I even went clubbing like a day or two before. It came completely out of nowhere hence why I think appendicitis was initially suspected.

I am surprised you don't feel worse given you have abscesses. These need treating I don't think they can heal on their own. I don't even think azathioprine would treat them it would probably be antibiotics. These abscesses may partly be why they are not offering you the lower down drugs.
I think all the evidence suggests meslamine do not induce remission, but may maintain remission in a small selection of patients, usually with inflammation in their colon. You would therefore need the abscesses and 12cm of inflamed bowel treating (i.e. with steriods) before commencing meslamine to have a reasonable expectation of it working. Although I am not certain whether prescribing these drugs are actually approved by NICE anymore for Crohn's disease.
 
eleanor_rigby said:
Hey Ernie, I don't know what any of my blood tests show except that for the past year they are always in the normal range. I do know that when I had a perforated bowel, an abscess and was septic and near death requiring emergency surgery my CRP was 58 and my white blood cell count was elevated but don't know what is was. Here is a history of my fecal calproctectin results and other results:

Sept 2015: fecal calproctectin - 65
October 2015: CT scan - normal
December 2015: colonoscopy - ulcers at terminal ileum, small bowel looked withered
April 2016: fecal calproctectin - 70
July 2016: fecal calproctectin - 60
September 2016: fecal calproctectin - 142
September 2016 - MRI scan with contrast - normal
December 2016: fecal calproctectin - 72
All blood tests between then and now - normal

I currently feel like crap though so my results really don't mirror how I feel (aside from the colonoscopy which was enlightening). Conversely before my bowel perforated I felt pretty much well just tired. I even went clubbing like a day or two before. It came completely out of nowhere hence why I think appendicitis was initially suspected.

I am surprised you don't feel worse given you have abscesses. These need treating I don't think they can heal on their own. I don't even think azathioprine would treat them it would probably be antibiotics. I think all the evidence suggests meslamine do not induce remission, but may maintain remission in a small selection of patients, usually with inflammation in their colon. You would therefore need the abscesses and 12cm of inflamed bowel treating (i.e. with steriods) before commencing meslamine to have a reasonable expectation of it working.
Click to expand...
I had an abscess in 1992 that bled for three months. I had to have it drained twice and needed IV antibiotics.
 
Yet more absolutely fantastic posts. Thanks so much.

Scipio, I took an 8 week course of Budesonide ending on 9th December. Three 3mg capsules a day for four weeks, two for two weeks and one for two weeks. I noticed no benefit for two weeks but then I definitely lost my stomach discomfort until the end of the course. It has since re-emerged. I didn't have any side effects at all so wouldn't hesitate to zap the inflammation again with a further course if allowed by the GI. Indeed one wonders why it's not possible to be on them all the time ....

Eleanor, with the exception of your Colonoscopy your results are surprisingly good and much better than mine. Like you wondering why I feel so well I am wondering why you feel so bad, but it just goes to show how patient specific this all is. It is also interesting to get a sense of the CRP levels experienced by someone who is very poorly (58) versus my current reading (13).

I hear what you say about me feeling well if I've got abscesses and so I wonder if I have got that wrong. I've certainly got two puss-filled something's according to my MRI (with contrast) report. I need to check .... See not enough time and care given explaining my precise diagnosis to me ... I'm already confused.

Combining what you say with Scipio's comments it appears that a possible course of action could be a simultaneous course of both strong antibiotics and Budenoside to try and zap it into remission and then on to the Mesalamine (and possibly still the antibiotics) to try and maintain remission. That sounds like a great plan to me but then I'm not a GI :)

Still I am very keen to give something like this a go before even considering starting on the Azapriothine. I do hope they will allow it ....

Thanks again to all.

Ernie
 

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