Terminal Ileitis pain - now goes into groin/thigh (Toronto Canada)

When they did the latest scope, the GI said he could not get into my Terminal Ileum due to the inflammation.

I am on 4 g Pentasa (started Feb) and Imuran (started in April).

The WBC is coming down (15K in Feb and now 11k), but the 'terminal ileum' pain is not stopping. It feels like a hot appendix, and the last few days, the pain is travelling into my groin.


I am *very* concerned about the pain spreading into my groin. This seems like a big warning sign to me.

I've been at the ER several times for this. They do bloodwork, give me IV fluids and morphine a few times, and send me home.

What should I do next? I'm really scared that my Terminal Ileum could blow. I'm really scared that I could die if this happens.

[NB Under the care of a general GI doctor. He is not an IBD specialist.]

Any information or suggestions are greatly appreciated!

Emma
Toronto, Canada

I've had so many ultrasounds of my RUQ and RLQ, it's not funny. [My R. ovary and gallbladder are fine.]

I had a CT where I had to drink something and got an IV, but the CT report said view of my GI tract was 'limited' because it was 'under-distended'.

You know I was curious about that.

The GI doc said he didn't want to go thru my TI with the Scope due to the swelling. Could the Pill Cam get thru ?

I don't know how big the pillcam is.....that's a concern to be sure.

You do need a GI as Marauder suggested.

q

My terminal ileum was inflamed for a long time due to IBD. The inflammation from my colon pushed back up into the ileum and it completely eroded away my IC valve. Now, food just dumps straight into my colon from the ileum without stopping. This causes me pain, cramping, diarrhea, gas, and malabsorption of nutrients. My GI says I will have lifelong IC Valve syndrome now along with small intestinal bacterial overgrowth.

He said this is not common for UC and told me that this was a problem for some of his Crohn's patients but all my biopsies say UC.

I read that UC improves in people who have had their appendix removed. It seems to limit the disease.

And UC is also -less likely to occur- in those who had their appendix removed in childhood.

There is a big Study being done in Europe now (UK, Netherlands) where they are removing appendixes in people with UC to see how much it helps.


It is called The ACCURE Trial.
http://www.ncbi.nlm.nih.gov/pubmed/25887789

Hey Marauder93,

Sure. I'd certainly never hedge my bets on it (or my colon/TI), but I found the research so far interesting. Most surgeons probably don't want to pro-actively operate on a 'hot' or cranky abdomen, anyway. :)


--
re TI biopsy
The GI doctor did not tell me if he biopsied my TI.

He said "pan colitis" and that there was so much 'swelling' at the TI that he didn't enter it.

He also showed me pics of my UC on his computer screen, which is much more than any previous GI doc has done.

He's an old school doc (~70) and doesn't tell me things like my bloodwork numbers.

Due to how I feel doctors under-share my test results, I have started going to LIFELABS for my blood draws. I like them for two reasons. #1 There a patient can make an online account and view their test results. #2. They also offer the Calprotectin test (GI inflammation), which I hope to get done.

[I'm not an nurse, but I spent 4 years in a BSN program, so I'm NOT liking the mushroom treatment... esp with Pancolitis AND being on Imuran. I need to know every test's numbers. LOL]

I hope to be transferred to Mount Sinai. I am scared to have my Ileo-cecal valve getting damaged, as Bacongirl mentioned and was so kind to warn me about. OMG.

I feel that it's function is starting to be impaired -- nausea, reflux, light headedness, weird headaches, LRQ/URQ pain, etc. This may also be the Pancolitis at work.

Yesterday I went to the Mount Sinai ER to ask to be switched to their IBD program.

They are writing my GP to see if I can be sent there to assess me for Crohn's and TI complications.

Things are really affecting my marriage and my 7 year old is not wanting to go to school (and leave me) because he sees me so sick and running to the ER with the abdominal pain attacks.

I've got to get this under control.

Desperate to start Remicade.

Post Edited (emmalouwho) : 5/10/2016 10:24:24 AM (GMT-6)

emma,

i've actually heard the opposite about the appendix and that UC patients shouldn't have it removed. i've begged my doctor to take it out because i get appendicitis every time i have a flare. apparently, it houses good bacteria so when we get sick, we have a back up storage of healthy probiotics. i always have to take antibiotics when this happens though but it works every time. it hasn't ruptured yet.

emmalouwho said...
Marauder93:

My drugs are Imuran (50mg since April 5th, then 100 MG since April 20 when I flared and called GI doc's office), Pentasa 4 g oral (since Feb 12 colonoscopy). Weaned off the Prednisone now.

I also drink VSL#3 (1x/day).

Some of my impatience is I have not improved much, symptom wise, since I started with these drugs -- after my Feb 12 colonoscopy at the hospital with this GI doc.

Still feeling like my appendix area is going to blow on a daily basis. [Wary of going along and just taking narcotics to cover up that symptom.]

At this point, I think I need Remicade -- as this has been going on for years due to a previous medical error (not enough biopsies at The Rudd Clinic, and then being told to 'take Imodium' by the St. Mike's GI doctor).

Was it easy for Mount Sinai to get set up with the EAP (Exceptional Access Program) thru the Ontario Ministry of Health for Remicade? My three months of an Imuran trial (as required by the MOH) will come up in July and this current GI doc hasn't mentioned starting the process yet. Getting scared about financials given that it is a $20-30K drug, etc.

I know how you feel about the test results. Im a med student and they STILL arent very forthcoming with all of the details. Ive started to straight up ask for copies of tests and procedures.

Good news is its way to early to be seeing the effects of imuran. Remicade is a solid choice especially since youve been flaring for so long. My GI started the process and 2 weeks later I had my first dose. The company that organizes it (bioadvantage or youradvantage or something to that effect) is amazing and takes care of everything except your signatures. The drug will either be covered by your insurance or the province, assuming you arent a multi-millionaire.

I tried the patch up to 21 mg but it did nothing Im afraid

Yeah, here in my part of Canada (Ontario), I have to do 3 months of Imuran before I get to apply for Remicade.

Frustrating that people can lose their colon before they can get 'the best' care.

I don't have insurance. LOL

Did you use the Ministry of Health's 'Exceptional Access Program' (Section 8) to get your medication?

My GI doc said I had to do several months of Imuran before qualifying for Remicade.

Post Edited (emmalouwho) : 5/11/2016 8:39:55 AM (GMT-6)

emmalouwho said...
http://www.health.gov.on.ca/en/pro/programs/drugs/pdf/frequently_requested_drugs.pdf

Page 196 of the Ministry's EAP manual says"

'Severe disease'
a. Mayo score >10 AND
b. *Endoscopy subscore ≥ 2
c. Failed 2 weeks of oral prednisone ≥ 40mg (or 1 week IV
OR equivalent)
d. Stabilized with 2 weeks of oral prednisone ≥ 40mg (or 1 week of IV equivalent) but the prednisone dose cannot be tapered despite 3 months of AZA/6MP (or where the use of immunosuppressants is contraindicated)

The link shows you need EITHER A, B and C or just D alone. Pretty sure you have A, B and C no?

It's good you went to make your appointment and that your obvious distress didn't go unnoticed.
Hopefully, the entyvio will work for you.

q