Awaiting more tests

[BearAndRabbit]

Hi all,

First I just want to say thanks for bing so active on this forum - I've found it really helpful over the last few months. I'm currently awaiting test results / more tests from my local doctor at the moment, she suspects I may have Crohns's, but wanted to run my symptoms by you guys in case I get dismissed (for the third time) and should be pressing for more tests or a different Dr. I'm waiting on some blood tests (FBC, coeliac and the IBD ones)

Current symptoms are:
- "ballotable mass" in my lower let abdomen - feels like my intestine but hard, this is what my Dr is suspicious about, ultrasound proved its not gynaecological, and I've felt a similar hardness above my belly button too - it doesn't disappear with a bowel movement, has been persistent
- Loose stools, but usually only 1 or 2 times a day, often in the morning, preceded by sharp pain and urgency that occasionally prevents me from standing straight (I've had this on and off for years) and very occasional diarrhea - 7 on the stool scale. If I go more than 24hrs without a BM(maybe once a month) I get terrible pain in my side, worsened by passing gas, before BMs.
- Very slight weight loss, mostly just not being able to put on weight, I'm very skinny for my age
- anemia (don't know of a time lately when I haven't been anemic!)
- General abdominal pain, repeating in a couple of spots and sometimes just all over
- Burping a ridiculous amount (I've always been gassy but now it's just daft, 10-20 big ones in the ten minutes after a meal)
- always had a low appetite, but it's sometimes peaked now with a terrible hunger, more like headache than hunger, I presume due to not absorbing my food
- Eczema on my eye, ears and elbows (which I only had previously when I also had the above symptoms about 2 years ago)

Previous symptoms:
- all of the above, for a period of about 6 months, over a year ago (Drs did ultrasound but that's all, was written off as IBS, I basically concluded that I could only eat a small selection of foods) I lost more weight that time.
- shortly after the old round of symptoms, developed a severe abdominal pain after a tiny late night bowel movement that sent me to the ER. Felt like every movement I made was breaking my insides somehow. This was checked for appendicitis but then written off by my GP after it subsided about a day later. This happened also about 5 years ago, I had to crawl out of the bathroom it hurt so bad, but cleared up quickly and I was living abroad so didn't see a Dr.
- after that I also experienced some blood and mucus in stool, and general abdominal pain, but after a week or so it cleared up. (Dr also checked for hemmorhoids but didnt find any)
- general food over sensitivity / paranoia, throwing up / getting diarrhea at seemingly harmless meals every few months
- needing bowel movement during meals (almost every meal) but this seems to have subsided apart from breakfast!

The most confusing part, is that I also have gyne symptoms (this sent me to the Dr in the first place). Irregular periods, weird cramping all month, and in the last 3 months light, but constant bleeding (not like normal flow). It's really wearing me out, and seems to be going hand in hand with severity of BMs or pain. My ultrasound didn't show any abnormalities in that area, but I've heard it can be affected by Crohn's, and I'm also wondering if I have endometriosis with bowel complications. Either way a conclusive diagnosis seems like a bit of a long shot for either condition!


As you can see, I'm missing a few of the typical Crohn's symptoms, but also feeling generally unwell, and exhausted because I just can't seem to get any energy from what I eat (including on days when my cycle seems back to normal). I feel so thankful to not be struggling with much more severe problems like others here, but I have to keep reminding myself what it felt like to not be ill - and I realise I'm definitely not well, even tiny things like climbing the stairs in my house make me feel dizzy or sick, and that definitely didn't happen when I felt fit and healthy.

Thanks to those who have read all of this - its such a wonderful thing to have even a tiny bit of support from strangers on the Internet, I can't talk to many about this.

So question is, should I be pushing for further Crohns tests? Or does it definitely sound like something else?

 

[dannysmom]

Hi and welcome. With your history of abdominal pain I think it makes sense to have more testing. I am wondering why they do not do some imaging (MRE) and a colonoscopy/endoscopy. I am sorry you have gyn issues too. Have your thyroid levels been checked? Low thyroid will also cause nearly continuous peroids and fatigue. I do hope you get some answers. This forum is great for support ... as there are many of us (care-givers included) that find ourselves 'undiagnosed'.

 

[Ihurt]

I am so sorry you are dealing with this. I also am undiagnosed as well. I would press for more tests, at least a CT or something. Have they did any stool tests to check or inflammation?

I also am having gyne issues as well. I will get midcycle blood tinged discharge and I get pelvic pain as well.. I am actually going to a vaginal ultrasound tomorrow. I already had a CT that showed some uterine fibroids. Not sure if that is what is causing my issue or not though..

Endometriosis can cause horrid pains in the intestines from what I have heard. My gyne was suspecting that I also have endo. I have not been officially dx as in order to get a definite diagnosis you have to have a laproscopy done.

I guess I would definitely get the gyne stuff checked, especially if you are having mid-cycle bleeding going on. Also you should maybe get to a gastroenterologist to see about the intestinal issues. They will likley order tests to see what is going on... Good luck and hope you can get some answers soon.

Hi all,

First I just want to say thanks for bing so active on this forum - I've found it really helpful over the last few months. I'm currently awaiting test results / more tests from my local doctor at the moment, she suspects I may have Crohns's, but wanted to run my symptoms by you guys in case I get dismissed (for the third time) and should be pressing for more tests or a different Dr. I'm waiting on some blood tests (FBC, coeliac and the IBD ones)

Current symptoms are:
- "ballotable mass" in my lower let abdomen - feels like my intestine but hard, this is what my Dr is suspicious about, ultrasound proved its not gynaecological, and I've felt a similar hardness above my belly button too - it doesn't disappear with a bowel movement, has been persistent
- Loose stools, but usually only 1 or 2 times a day, often in the morning, preceded by sharp pain and urgency that occasionally prevents me from standing straight (I've had this on and off for years) and very occasional diarrhea - 7 on the stool scale. If I go more than 24hrs without a BM(maybe once a month) I get terrible pain in my side, worsened by passing gas, before BMs.
- Very slight weight loss, mostly just not being able to put on weight, I'm very skinny for my age
- anemia (don't know of a time lately when I haven't been anemic!)
- General abdominal pain, repeating in a couple of spots and sometimes just all over
- Burping a ridiculous amount (I've always been gassy but now it's just daft, 10-20 big ones in the ten minutes after a meal)
- always had a low appetite, but it's sometimes peaked now with a terrible hunger, more like headache than hunger, I presume due to not absorbing my food
- Eczema on my eye, ears and elbows (which I only had previously when I also had the above symptoms about 2 years ago)

Previous symptoms:
- all of the above, for a period of about 6 months, over a year ago (Drs did ultrasound but that's all, was written off as IBS, I basically concluded that I could only eat a small selection of foods) I lost more weight that time.
- shortly after the old round of symptoms, developed a severe abdominal pain after a tiny late night bowel movement that sent me to the ER. Felt like every movement I made was breaking my insides somehow. This was checked for appendicitis but then written off by my GP after it subsided about a day later. This happened also about 5 years ago, I had to crawl out of the bathroom it hurt so bad, but cleared up quickly and I was living abroad so didn't see a Dr.
- after that I also experienced some blood and mucus in stool, and general abdominal pain, but after a week or so it cleared up. (Dr also checked for hemmorhoids but didnt find any)
- general food over sensitivity / paranoia, throwing up / getting diarrhea at seemingly harmless meals every few months
- needing bowel movement during meals (almost every meal) but this seems to have subsided apart from breakfast!

The most confusing part, is that I also have gyne symptoms (this sent me to the Dr in the first place). Irregular periods, weird cramping all month, and in the last 3 months light, but constant bleeding (not like normal flow). It's really wearing me out, and seems to be going hand in hand with severity of BMs or pain. My ultrasound didn't show any abnormalities in that area, but I've heard it can be affected by Crohn's, and I'm also wondering if I have endometriosis with bowel complications. Either way a conclusive diagnosis seems like a bit of a long shot for either condition!


As you can see, I'm missing a few of the typical Crohn's symptoms, but also feeling generally unwell, and exhausted because I just can't seem to get any energy from what I eat (including on days when my cycle seems back to normal). I feel so thankful to not be struggling with much more severe problems like others here, but I have to keep reminding myself what it felt like to not be ill - and I realise I'm definitely not well, even tiny things like climbing the stairs in my house make me feel dizzy or sick, and that definitely didn't happen when I felt fit and healthy.

Thanks to those who have read all of this - its such a wonderful thing to have even a tiny bit of support from strangers on the Internet, I can't talk to many about this.

So question is, should I be pushing for further Crohns tests? Or does it definitely sound like something else?

 

[juljul]

Hi BearandRabbit,

I am in a similar situation to you, got lots of GI issues, though not exact same symptoms, and undiagnosed. However, like you I have gynae issues and my backside in particular always flares when I am menstruating (get sitting pain too) and I thought I might have some bowel endometriosis and mentioned that ages ago to the GP..as I suspect normal endometriosis though have never been investigated. Always had painful periods and get a chocolately (sorry if TMI) discharge before periods, and sometimes mid-cycle. I have had gynae issues for a long time but my problem is I am not assertive enough and my GP always tries to fob me off with some patronising rubbish because they don't want to spend money.....they have been a Trust for a long time my surgery. Maybe worried about their bonuses!!

I think the definitive test for endometriosis is laparoscopy. You could certainly ask for a laparoscopy ....but you would have to have fairly convincing symptoms as it is an operation of sorts.....not sure what the risks are.

If you think you have digestion issues you could also ask for a test of pancreatic enzymes and for a test of your vitamin levels, and some food allergy testing other than celiac testing...the skin prick tests.


Good luck with your investigations. Try to stay strong and positive. You are not alone and people on this forum look most helpful and offer some good advice and are supportive from what I have seen already .....am quite new on the forum myself as a poster/contributor though have been reading posts for longer .

juljul xx

 

[Karen]

Praying for you that you find the results that your looking for

 

[Gculk]

It sounds like it could be something inflammatory, especially with the blood after your er visit. I would definitely keep pushing for more answers, and certainly up the IBD direction. However, theres another thing that popped into my head.

The gas could possibly be small intestinal bacterial overgrowth, which would cause excess gas, and maybe malabsorbtion. This could also explain diarrheah and anemia. The hardness is a bit worrying, have you had CT or MRI to look at them?

Try and count up the calories you're taking in, and see if it is more or less than what you're putting out. If you've always been a light eater, stomach troubles will make you want to eat less. I have to force myself to eat not to lose weight when I'm having trouble. If it is higher than you require and you're losing weight, you've got some malabsorbtion.

The eczema could be related, or just triggered by stress from not feeling well, or further malabsorbtion.

You should keep pushing on for further testing. I could make a case for IBD for you as well, but this is something you could do a bit of working about on your own. Also try and find any other reasons for the gyne issues. The constant blood loss could be a reasonable for the anemia.

Keep at it, hopefully you'll be able to get some results from your doctors. Your symptoms are definitely not normal so YES you are doing good complaining to doctors.

Just a word of warning now: It is often hard to get doctors to work for you. I've been at it for 3 years, 4 doctors, and 2 ER visits and I've gotten no further. So it's tough. It's good you're coming to us now.

Best of luck
Nathan