Is anyone having similar symptoms ?

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Hi I'm a 27 yo male with a 6 month history of upper abdominal pain, back pain, indigestion, bloating, gas, tenderness and fatty foul smelling stool with undigested foods.

After having 2 CT scans, abdominal x-ray, barium x-ray, ultrasound, colonoscopy and gastroscospy, blood works, stool tests and more, the only thing they found was an inflammation of my terminal ileum. The GI believed it didn't look like Crohn's at first but biopsies came back positive for inflammation.

I was put on Entocort for 6 weeks with 2 follow ups scheduled in the upcoming weeks.

My concerns are really in regards to the symptoms I experience, which I believe are unrelated to the inflammation in my ileum.

Here are some of them

  • Back pain (stabbing/ pinching pain in my mid back and shoulder blades)
  • Upper abdominal/lower chest pain
  • Pale/yellowish, oily and foul smelling stools
  • Loss of appetite/ early satiety
  • Important weight loss (20 lbs)
  • Dry mouth, thick and beige-brown saliva
  • Constant horrible taste in my mouth
  • I get indigestion immediately after eating
  • Fat intolerance
  • Intense stomach and intestine rumbling
  • Painful hunger sensation
  • Nausea, belching, hiccups
  • Unusual urines ( Color, density and smell)
  • Extreme fatigue, confusion

Such symptoms are usually seen in pancreas/gallbladder disorders and seem to be less common in Chron's disease.

Does anyone on here have experienced similar onset of symptoms with IBD ?

Alex

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10 Replies

  • Posted

    Hi Alex

    Just saw your post and wanted to reply although I'm not sure how much help I will be as I'm not feeling well at the moment and haven't been able to eat at all today. Not something I'd recommend but unfortunately I get days where I'm in so much pain I just can't eat and do my best to keep hydrated especially in this hot weather.

    Anyway sorry for the waffle about myself when I'm trying to be of some help to you...I can totally identify with most of what you have experienced and your symptoms sound very similar to mine. I too have Crohn's in the terminal ileum but I'm older than you and female I had suffered for many years with ibs type symptoms which were linked to a gynaecological condition and I was somewhat fobbed off by one consultant when I returned with much worse symptoms years later. Then I saw my current gastroenterologist who I had been under the care of previously but sadly did not get to see her when my symptoms initially progressed. So I eventually got diagnosed by seeing her as she did more thorough tests the same as you had basically but also noticed I had very low b12 deficiency and as it is absorbed in the terminal ileum it was a sign alongside my severe iron deficiency anaemia for which there was no other explanation/cause i.e no bleeding or poor diet plus my very low folate levels, that I was no longer absorbing nutrition very well and that along with small bowel mri which showed thickening of the ileum plus elevated faecal calprotectin level but only midly elevated that gave the diagnosis. I also have functional gut disorder/ibs probable microscopic colitis as it was highlighted on previous biopsy reports and diverticulitis. As a result I often don't know which condition is playing up but as time passes you get to know your body and how it reacts. For me I have a fair amount of medication orally although my vitamins are injected abd my iron replaced at the hospital by infusion as I no longer absorb it but mostly I can't tolerate it orally as it starts off a flareup of pain and diarrhoea.

    Have you got a specialist ibd nurse? It may be helpful to discuss your diet with her and if you have difficulty maintaining your weight there are replacement meal drinks they can prescribe for you or refer you to the dietician. I find budesonide/entocort helps me but as I have high blood pressure I have to be careful with it. I also take a powder called questran which helps ease the diarrhoea and I too get the pale yellow stool but I've had my gall bladder removed so that may contribute to that issue.

    Sorry I don't think I've helped much but please don't think you are alone in this there are lots of things now the drs can do to help and there is more support too. You will get there and be able to get your life back just use this time during the pandemic to find what works to help you and what your body reacts to. I take a good probiotic and I know not everyone believes they help but I honestly find I'm worse without mine and it also helps my immunity and mood.

    Please stay in touch to let us know how you are doing.

    Take care

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    • Posted

      if you dont mind me asking, I had a b12 deficiency as well, just under the normal low level and it fixed itself without taking the vitamin but stayed low normal range. Occasionally i will get bad cramping and gas with a blowout, my doc believes i have IBS but to me that doesnt explain the low B12, my pain is usually relieved after a movement or gas and i guess thats not something that happens with Crohn's. ive never had a colonoscopy but inflammation markers in blood are normal and stool sample was normal.

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    • Posted

      Hi Jacob

      No I don't mind at all ask away and I will try my best to offer some help although my brain doesn't work as it used to which is one of the most frustrating things that has manifested in my health issues and is often linked to b12 deficiency but also can be associated with chronic anaemia which I have too. It is difficult as many symptoms overlap but with a good consultant an understanding gp and by keeping a health diary which I really recommend (and wish I'd listened when it was suggested to me) it will be possible to unpick what affects you and what improves things or causes symptoms to flare. I have gained some valuable insight into b12 deficiency from the pernicious anaemia forum not sure if i can say other site names here but if you Google it there is good advice and help from them. With low b12 the blood test result isn't always as reliable as you can be symptomatic with a low normal level and if you eat a balanced diet there shouldn't be a low result unless there is an absorption problem. For me I became very unwell as I developed extreme fatigue and became breathless and kept gasping for air now and then even when sitting doing nothing I later found out it is called "the sighs" and is a classic symptom of b12 deficiency. I also had pain in my feet and would lose my balance and struggled at times to hokd a conversation as I would forget what I was going to say and get flustered as I used to be very on the ball. These symptoms crept up on me gradually looking back I think over many years which sometimes happens but then I developed low iron low folate and severe vit d deficiency and felt dreadful. I do think you need a repeat test to see if your b12 is low and your gp or consultant needs to look at why it would be low. With regards to the stool sample was it for calprotectin if so its good that they checked and good that its normal but get them to look at the whole picture of your health if you can not easy I know especially at the monent. Another thing i would say is if you have been supplementing b12 vitamins let your gp know as they need to know before you have anymore bloods. Something I have found very helpful is the fodmap diet if you look it up there is loads of free advice/recipes its basically identifies what you react to in foods even things like sweeteners in drinks coffee etc. Its not to be done without dietician advice if possible but worth looking at it.

      Stress definitely plays a part in how our gut behaves and I definitely get episodes of worse cramps gas and like you sometimes the pain eases afterwards but not always. Please do try the health diary even just an app or memo on yr mobile it may help identify any pattern and its difficult to remember stuff at appointments with limited time and it has helped me a lot.

      I hope I've helped a little and hope you feel better soon and get some more answers

      Let us know and take care

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  • Posted

    Hi Alex have they done a bile absorbtion test, it took 2 years before they did one with me and despite immunosuppressant treatment the acute diahorea persisted but now seems to be coming under control after treatment for the absorbtion issues.

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    • Posted

      Hi Sandy, not yet. The GI wanted to first start the steroid treatment and wait a couple weeks then depending on the results, he would pursue with further investigation and exams. I believe, from what I've understood, he wants me to have an EUS next. I also did the elastase stool test, results should be available by the end of this week.

      It's weird because I have 0-3 BM a day ( always first thing in the morning) and it doesnt look like diarrhea to me. It's definitely soft, sticky, fibrous, yellowish and full of residues but still has a certain consistence. However, I do have bulky and disgusting stools whenever I have fatty or refined food. There's also that dull and disturbing pain in my back and under my ribs that seems to stem from my upper right quadrant but not a 100% sure.

      Do you believe it could be some issues with the way I absorb bile ?

      What is a bile absorption test exactly?

      Much appreciated.

      Alex

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  • Posted

    They give you radioactive bile and then monitor to see what happens. If you're not absorbing properly it causes diahorea even after treatment for the crohn's it affects your ability to digest food and can be treated with medication it makes your stools slimy yellow and smelly

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    • Posted

      Thanks, I will ask my GI !

      I'm a little confused with the medical definition of diarrhea. Does it have to be more than 3 bm a day/ mostly liquid form ? Or one could have 1-2 larger bm with a more consistent form and it would still be "diarrhea"

      I do have liquid bm from time to time but most of the time I have larger bm which tend to be pale, sticky, smelly etc.

      Is it considered in the in the second froupdo

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    • Posted

      The bile malabsorbtion if left causes acute stomach cramps, slimy yellow smelly faeces, it can also lead to oedema swelling in the legs, this happened in my case. I am now undergoing testing for oedema type symptoms in the kidneys the sooner you get the test done the better, they left it too long with me, the test is expensive and the tendancy is to put it off. Insist on it. If found the treatment is either questran powders or cholestagel 625 capsules I found the cholestagel best for me as it has helped with all the symptoms you talk about. Wish they had put me on it 2 years ago. Wonder if anyone else has had this test and what results.

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