Ravenweaver - Colonoscopy clear but biopsies suggest crohns

[Ravenweaver]

Hello

To say I am a little confused is an understatement. I have had recurring GI problems (upper left quadrant and lower right quadrant) and moderate to sever joint pain for around 6years. I have been investigated for fibroids and endometriosis (sex was unbearably painful), rheumatoid arthritis, and had an MRI scan (due to limited sensation around my anus, severe lower back pain and urgency issues). I was prescribed Gabapentin following the MRI three years ago but refused to take it without a conclusive diagnosis or at the very least an understanding of what was going on and why.

My symptom profile has not really changed much other than I do now sometimes experience extreme fatigue and after a particularly severe attack of alternating constipation, diarrhoea and upper abdominal pain, swallowing can be very painful (was prescribed Lansoprazole). When the bloating and discomfort are bad i can have up to six extremely painful bowel movements in the morning and I need to have a clear run to the toilet (this has been going on for a few years and I now work from home).

Following a particularly difficult 12 months, very tired, very bloated, very sore (even to sit down sometimes) my GP booked me in for a colonoscopy; everything looked good on the surface (although I can understand why our insides are not on the outside) but the biopsies take revealed inflammation and the receptionist told me when I called for my results that the notes stated that I had inflammatory bowel disease (Crohn's). My blood results indicate infection (high white blood count) and my c-reactive protein is slightly elevated.

I have to wait around 6 weeks for a referral to the outpatients clinic and my GP wants to wait until I have been seen by the gastroenterologist before doing anything even though I am in the most pain I have been in for a long time.

Not sure what else to say really other than is waiting six weeks typical and has anyone else ever had an exacerbation of their symptoms following colonoscopy?

Thank you for reading

Viv

 

[Crohn's 35]

Hi Viv :welcome: OH yes in Canada we can wait for months as well. It isn't nice but we have no choice in the matter. I have noticed alot of newbies from the UK recently, but nevertheless we are all in the same boat to help each other through the rough times.

Very hard to get a clear diagnoses for this disease...bad enough to get it intially. Many people here from your country and therefore they can advise you better than I. Hope you get relief soon!

 

[Ravenweaver]

Thank you so much Pen

I appreciate the quick reply! I have waited six plus years so what is another six weeks huh . I suppose my real question is whether the colonoscopy has exacerbated my symptoms; I was actually feeling really good, pain free and having the most normal bowel movements I have had for a while, before I went in for the colonoscopy.

The colonoscopy went well and I actually felt really good afterwards. Now, three weeks down the line I am so tired I could sleep all day, my stomach is tender to the touch and I feel as though I have a tight elastic band around my abdomen. I am going in for a pelvic and ab ultrasound on Monday and I am really not looking forward to them touching me.


Viv

 

[Jessi]

Hiya Viv, and welcome to the family! Sounds like your going through a bit a rough time. So sorry to hear about that. :hug:

I think I was very fatigued after the scope - maybe due to the anesthesia?? It's not impossible for a scope to exacerbate you symptoms. It's probably not common though. If the scope perforated the bowel, that would cause a whirlwind of problems. I'm praying that's not the problem.

The fatigue might also be caused from a lack of nutrient absorption. Most of us suffer from that issue. Check out our Vitamins/Minerals thread.

http://www.crohnsforum.com/showthread.php?t=21162

Glad ya came around to join us. Hang out as often as you'd like. We're all in it together.

 

[David]

Hi RavenWeaver (cool name) and welcome Six years without a formal diagnosis? Ugh, you poor thing. Hopefully they'll get you diagnosed soon and on a proper treatment plan. If they suspect Crohn's, I'd spend the next six weeks doing a lot of reading here. Especially the Treatment and Diet and Fitness forums. As Jessi above mentioned, if it is indeed Crohn's, you need to really keep an eye on your various vitamin and mineral levels. Since you're fatigued, I would ask your doctors to test your vitamin B12 and Vitamin D levels. When you get the results, let us know here as some of us disagree with what is considered "normal"

We're here for you anytime.

All my best to you!

 

[Ravenweaver]

Hi Jessi Hi David

Thank you so much for the warm welcome! It really is appreciated In all fairness my GP has been pretty good but up until now she has really focussed on my joint issues and issues with my lower spine - I have moderate/severe disc deterioration at lumbar 4 and 5 respectively (just hoping and praying they fuse naturally without surgical intervention or nerve damage), sacroiliac joint issues and a minor problem with my coccyx which she believed were causing nerve irritation and in turn the accidents I have had and the urgency issues. The upshot of the above is that I have, over the last six years, been prescribed various NSAIDs eg diclofenac. I had to balance having a brief pain free interlude with the knowledge that the price would be either hideous, painful constipation or explosive, very painful diarrhoea and ultimately stopped taking pain relief all together.

Now I am just so sore and I am concerned that I have picked up an infection following the colonoscopy as when I go to the loo now the pain is worse than ever and I am so tender to the touch. My temperature spikes in line with increasing pain but when I get the pain in check my temp comes back down.

I just need to get answers and once I know what i am dealing with I can move forward. I will ask my GP re the vit B12 and D but have to wait two weeks for appointment.

Thanks again for providing a listening ear

Viv

 

[John-88]

Hi and welcome. One thing that stuck out was your lumbar injury. This can be reflective pain from your stomach and vixe versa. I too have a lumbar herniation and when I move the wrong way I can cause me to have to use the bathroom immediately. Also if my stomach jurts it can make my back sore.
I really hope yoy find a good way of living. Have you considered a chiropractor for treating your injury?

 

[David]

Hmm, has your doctor ever mentioned ankylosing spondylitis to you? About 5% of people with Crohn's Disease have or will get it.

 

[Ravenweaver]

Hi and welcome. One thing that stuck out was your lumbar injury. This can be reflective pain from your stomach and vixe versa. I too have a lumbar herniation and when I move the wrong way I can cause me to have to use the bathroom immediately. Also if my stomach jurts it can make my back sore.
I really hope yoy find a good way of living. Have you considered a chiropractor for treating your injury?

Hey John, Hey David

I don't have herniation issues (ouch), thankfully the deterioration is uniform and fingers crossed I will fuse naturally. I have had input from physio and she was adamant that I do not go to a chiropractor. The more I read though the more convinced I become that the sacroiliac joint, knees, ankles and heel problems I have had can be traced back to IBD!!! My GP just thinks it's peachy that I don't have Rheumatoid Arthritis (my mum and her sister both have RA, factor positive and severe) and any inflammatory markers in my blood tests are of no interest to my GP because Xrays of my joints "do not show damage consistent with RA" and my lumber issues have been explained away by poor posture as a result of the sacroiliac joint pain and at age 36 having "the hips of an old woman" (locum GP who reviewed some xrays). In fact after my last bloods my GP actually said to me "you must know where in your body you have an infection - just look at your white blood count - or it could be a fluke".

Urine samples and stool samples (boy were some of them awful) all came back clear.

Colonoscopy was a last resort for my GP and I am looking forward to the referral to gastro coming through. I really am struggling with the pain and fatigue atm - I slept for 11 hours last night and 3 hours this afternoon!! The pain is making me so irritable and it just isn't me

Thank you once again guys -

 

[Ravenweaver]

Hi RavenWeaver (cool name) and welcome Six years without a formal diagnosis? Ugh, you poor thing. Hopefully they'll get you diagnosed soon and on a proper treatment plan. If they suspect Crohn's, I'd spend the next six weeks doing a lot of reading here. Especially the Treatment and Diet and Fitness forums. As Jessi above mentioned, if it is indeed Crohn's, you need to really keep an eye on your various vitamin and mineral levels. Since you're fatigued, I would ask your doctors to test your vitamin B12 and Vitamin D levels. When you get the results, let us know here as some of us disagree with what is considered "normal"

We're here for you anytime.

All my best to you!

Hi David

I have just had a call from my GP surgery asking me to make an appointment to discuss "low folate levels". When I asked for the details I was told my GP wanted to discuss with me so I will let you know the results when I get back.

Thanks
Viv

 

[Sybil Vane]

Whenever I have a colonoscopy or other test that requires purging, I have a flare up of my symptoms for days. I hope you find the right doc who will be able to give you some answers.

 

[shazz]

Oh Ravenweaver I do so very much feel for you.
Welcome to the forum.
It was diclofenac that started my first flare off, november 2010, and I have only just got a diagnosis of Ulcerative Colitis. Had an MRI scanand they now think I have Crohns as well.

After my first colonoscopy I felt ok for a few days. But after a while I was feeling really tired and exhausted as well. I was on a low residue diet at the time as well so dont know why.

Have you thought about going to the a&e department to see if you can get any answers there? Its no fun being in pain all the time and that in itself is very tiring as well.

Really hope you get answers soon and dont take any crap(no pun intended) from your GP either.

Sending you hugs. :hug:

Sharon

 

[Ravenweaver]

Update time:

Sorry it has taken so long to post back...I was seen in hospital by the GI nurses on Dec 1st and based on my presentation then (fever, eye inflammation, extreme fatigue, combined with blood results, biopsy results and excruciating pain) my GP was contacted and the nurses advised that I needed Asacol 2400mg twice daily and I was booked in for an emergency MRI. Results are through from ultrasound (GP organised this at same time as colonoscopy) and there appears to be evidence of infection and scarring on/in my gallbladder and I have been booked in to see the consultant GI re the MRI.

Whilst I have not had a definitive "this is crohn's" my GP has intimated that it is and the last update from the hospital anticipates a crohns diagnosis...

I am a touch worried about taking the asacol as my blood pressure shot up and I had the most unbearable headaches for 2/3 weeks from starting the drug. My BP sits around 118/70 and it is now 150/92. I had no choice but to go to A&E on 31st Dec and the doc who saw me prescribed Rizatriptan and an antibiotic stating I had a migraine and an ear infection - she didn't listen/wasn't interested when I told her about taking the asacol and stated that my bp was in the high normal range and nothing to worry about.

When I went to collect the prescription I asked the pharmacist what she thought she recommended stopping the asacol immediately and not to take the Riztriptan or the antibiotic until I could get a second opinion.

I have not taken asacol since and my blood pressure in down and the headache has gone but I feel extremely tired, joints are sore again, abdomen is tender to touch and I am back to racing to the loo!

My GP agrees that I did the right thing re not taking the antibiotic and Rizatriptan and now I will wait until I see the consultant on 26th.

Has anyone had a similar experience with asacol?

Thank you for reading

Viv

 

[David]

Hi Viv, thanks for the update. I'm sorry to hear you're having trouble with Asacol I'd suggest reading this forum to see other's experience with Asacol and asking specific questions there if you don't see your answer.

Take care

 

[Hexie]

Hi Ravenweaver (love the name)

I always have a flare up after I've had a colonoscopy - which is why now my Crohns is behaving I won't have one done - had major arguments with my Crohns doc over that. And when you flare up, you do feel tired as you're on the loo alot and/or being sick - it takes it out of you.
Rheumatoid Arthritis also makes you feel tired when it's kicking up
Asacol made me feel generally more ill and I came out in a horrendous rash - which is why I don't take it anymore.

Hang in there Viv and I hope they sort you out meds and illness wise as soon as possible :hug: :hug: