Severe pain but in remission.

[valleysangel92]

Hello all.

As some of you know, last June I had a resection to remove part of my TI, and since then I've apparently been in remission.

I've had bloods and stool checks and they've come back fine, but I'm still getting quite a large amount of abdominal pain. The pain is in the lower right quadrant, and is sometimes just a dull ache that I can easily ignore, tonight, however, is one of those pretty frequent times where it feels like a knife is cutting through my insides.

I'm currently at a loss for what to do. I saw my GI in January, and he was unconcerned because of my test results (although my vit D and iron are 'a bit ' low) . He even went as far as to say he isn't sure I even have crohns ( although a top professor in England says I do) . The GI I see regularly isn't an IBD specialist, but trying to get in with one who is, is like getting blood out of a stone, I'd be waiting months and might not even get to see them even after that .
One thing that has crossed my mind is endometriosis, but, surely that would of been picked up during my resection?

I'm tired all the time because I'm hardly sleeping from pain, and I'm not really able to do much to make me sleepy either.. I'm also getting a fair few headaches. I don't know if it's linked, but I've been getting some chest pain (I've had ECGs, all fine) and I've been noted to have fluid around my lungs on both CT and Mri scans

Also , recently I've had a massive increase in joint pain and swelling, with my hands sometimes being too stiff and sore to type on a computer or hold a phone, or even to cut up dinner. I see a rheumatologist on the 20 th of this month.

I feel like I am at the start of another vicious cycle . It took me almost 5 years last time to make Doctors listen and I'm determined that this time I'll have better control of the situation and better knowledge of what I could be dealing with.


If anyone can shed some light I would be very very grateful!

 

[Kev]

Hi

After my last operation, the surgeon pronounced me 'cured'. WRONG! I finally put my IBD to sleep... back in 2007... and it hasn't progressed at all since. However, I have pain on a recurring basis every day... multiple episodes... anywhere from 15 minutes to a couple of hours. It is from extensive scar tissue inside my GI tract. Quite inoperable in my case. Might be different for you. So, you could be in remission, but if you've got any scar tissue... like me... and everything in your GI tract passes over, under or through it... then pain becomes just a part of life. So, don't let the pain convince you you aren't cured.


But just because you are in remission, doesn't mean life reverts back to the way it was before you got ill. Some damage is permanent. And, from what I understand, any EIM's don't automatically stop just because you are in remission. They are un-affected by it.

 

[valleysangel92]

Thankyou for your response.

The point of the surgery was to remove scar tissue, which was what they said was causing the pain, and they took some inflammation with it that hadn't been healed by medications too, I'm not expecting my life to go back to the way it was before, infact, I don't even really remember what it's like to not have pain in some part of my body , I've had some form of pain from age 12.

But this pain is the same level as before the operation, which is why I'm asking for opinions . I'm not convinced that I'm not in remission, but I'm not 100% convinced that there isn't something more going on either and would just rather find out now than let anything that is there fester. I am aware that having a flare up of eims doesn't automatically mean a flare in my intestines but just wanted to make sure everyone has the relevant information incase something registers in the back of someone's mind.

Thankyou for your input.

 

[rrhood1]

Valley:
I had endometriosis for years until I finally got a female gyn doctor who did a lot of investigation but none of the many doctors I saw were able to know the extent of the damage. Endometriosis doesn't show up well on ultra-sound, X-rays, etc. if the surgeons weren't looking for it, they may not have noticed it or it could be fibroids causing the pain. Endometriosis is sneaky - after having a total hysterectomy 25 years ago, I've had an endometrial tumour show up now which is killing off one of my kidneys. Find the best Gyn doctor you can and expect they'll want to do a laparoscopy to check out what's going on.

 

[valleysangel92]

Thankyou rrhood1

Id heard before that the only real way to diagnose endometriosis was a laparoscopy, and I have had it mentioned (once) by a GP that maybe that's whats going on, so thankyou for clarifying that. I'm sorry to hear that you have been suffering so long! I'll need to go through my GP to find a gyn, we can't do it ourselves in the UK, thats one of the slight down sides, we get what we're given. Thanks again.