TI Resection... a little angry

[wolfem]

I was just wondering how many people have had this surgery? From what I learned from pathology is that most of the intestine actually adapts by regenerating. However, the terminal ilium does not. Does anyone know the long term effects of this. I hate to say this but in my case, I really don't know that my surgery was even necessary. My surgeon was too surgery happy in my opinion. He really didn't need to take out as much as he did but did so because it was 'standard' surgical procedure. He even told me it didn't 'look' that bad when he saw it which sort of makes me angry. Yeah--take out the abscess (which was already burst by the way) but don't take out more than necessary!

I've just been struggling with so many health issues since. I haven't found anyone on here in the same boat. Its like my whole digestive system doesn't communicate properly now and neither does my brain for that matter:sign0085:

Thanks. I always appreciate feedback

 

[David]

Hi Wolfem,

I'm so sorry. I can understand and feel your anger. The terminal ileum is indeed a very important part of the digestive tract. But the good news is, we can probably point you in a couple directions that might lead to some improvements. But first, some questions:

1. How many centimeters of your terminal ileum did they remove?
2. Did they remove the ileocecal valve? That's the valve that separates the small intestine from the first part of the large intestine.
3. If they DID remove that valve, did they try to rebuild it or just leave it as is?
4. I notice you're taking sublingual vitamin B12. How much? And what was your vitamin B12 level the last time you were tested and how long ago was that?
5. What other specific symptoms do you have that you attribute to removal of your terminal ileum?

Edit - There's a lot of people on here who have had part of their terminal ileum removed. In fact, it's the most commonly removed portion of the intestines for people with Crohn's Disease. If someone says they've had a resection without more specific information, my mind immediately thinks terminal ileum area.

 

[wolfem]

Thanks David

The surgeon was awful in my opinion--very arrogant. He just left it. He took out 8 inches and even the valve. I've been up and down up and down. I was 99lbs a few day ago and now I'm 96lbs again! I just don't digest foods anymore even though they say my gastritis isn't that bad. I probably have a metabolic issue. At any rate, the surgery has definitely left me with few issues because my crohn's doesn't look like crohn's to a few doctors out there:sign0085: Adrenal and pituitary hormone issues are making things difficult and the surgery just complicates everything. I just think they jumped on surgery really fast instead of assessing how much diseased tissue there actually was. It was sort of an emergency situation but not really! They waited a week to do it! And I was starving the whole time.:ymad: No TPN. Then I had been on an antibiotic that can cause nerve damage (black box warning). After that, I got C. diff from the antibiotic.

Anyhow, my mental state has literally deteriorated (mainly emotional) and my neuro pain is still there. Last time my B12 was good but I definitely need to be checked soon again. I'm only taking the sublinguals right now along with small amounts of B complex throughout the day (with food). I just wish that maybe somehow the TI can regenerate or at least the valve because this has caused lots of problems for me that just makes things worse for the other health issues I have.

Thanks!

Well, the good news is eating some raw foods helps to stabilize blood sugars and my vision seems to be getting better as well. I guess I shouldn't be too negative.

 

[David]

1. When you say you don't digest foods anymore what does that mean?

2. What do you mean your Crohn's doesn't look like Crohn's?

3. What neuro pain do you have?

4. How has your mental state deteriorated?

I know handle gave you some good advice about electrolytes in that other thread. Without your ileocecal valve and all of your terminal ileum, there's a decent chance that you might get chronic diarrhea. As such, I'd suggest reading this thread and discussing psyllium with your doctor if the need arises.

 

[wolfem]

I see food in my stool but I don't necessarily have diarrhea. Its as if my stomach dumps things too fast or something of that nature. My stool just breaks apart. Occasionally my stool will turn yellow if I eat foods I can't tolerate (malabsorption?). Sometimes I get super super hungry and that usually occurs when I haven't digested the food properly (from what it looks like).

Anyhow, I guess its in remission by the blood values and SBFT. My sed rate is 1 last time it was drawn. My c-reactive protein is very very low. However, I guess you can still have localized mild inflammation at the tissue level. Sometimes I think I need to be on meds for my crohn's but my doctors don't want me on them if my crohn's isn't bad. I wouldn't be able to go on pred because I already have a hormone issue (unless it resolves). Anyhow, the first doctor I had told me that the pill cam images showed only very small ulcers in my duodenum and small intestine but nothing else. He told me he would never guess crohn's. Then I had a radiologist ask me if they were sure I had crohn's disease. Don't you think this is strange?

Well, I usually have burning pain (like fire) when I breathe and my back burns. Last time I had burning all over. My bones frequently hurt but it was my joints at first. I was taking a calcium supplement but developed osteopenia in a very short time regardless.

For awhile I was so ADHD that I couldn't focus on one thing at all. Now I'm a little better. At times I can't remember things because my thoughts come at once. I feel like I'm in a fog sometimes (that is getting a little better too).

I don't think all of my symptoms are from the surgery but I do think the surgery has made it worse for me :/

I appreciate all the feedback. I'll definitely look at the electrolyte thread I was taking potassium and sodium but I just don't know how much to consume:/

 

[David]

I haven't educated myself about food not being properly digested so I'm no help there, sorry Hopefully someone else can provide some insight. But nothing I've read about TI resection would make me think that is the cause.

I don't think it's all that strange that, at times, it wasn't that evident that you had Crohn's Disease. If they did a proper diagnosis initially and during subsequent tests it wasn't as apparent, that just tells me you weren't flaring much if at all.

I'm no real help with the other stuff, sorry But I'd agree that they probably aren't due to your surgery though I'm sure the surgery didn't help things.

It sucks that you're having to go through all of this

*hugs*

 

[wolfem]

1. When you say you don't digest foods anymore what does that mean?

2. What do you mean your Crohn's doesn't look like Crohn's?

3. What neuro pain do you have?

4. How has your mental state deteriorated?

I know handle gave you some good advice about electrolytes in that other thread. Without your ileocecal valve and all of your terminal ileum, there's a decent chance that you might get chronic diarrhea. As such, I'd suggest reading this thread and discussing psyllium with your doctor if the need arises.

Hey David. Sorry for rambling on and on in the previous post. Do you know if psyllium will lower cholesterol? That is another thing I don't get. My cholesterol drops and its only 118 now (total). It used to be a lot higher after surgery two years ago. I eat coconut oil (occasionally), take a few fish oil at times, and cook with olive oil.

Its o.k. I appreciate all the support on here even if my crohn's-like symptoms may be from an underlying metabolic or other autoimmune problem. Heck I don't even go to the bathroom but once a day so that is another reason the doctors are puzzled. The only other strange problem that I have is recurrent high strep titers followed by fever and sore throat. I had them before crohn's came on and I still get them.

 

[David]

You have nothing to apologize for!

Psyllium can indeed lower cholesterol. It works a lot like the prescribed medications welchol and questran.

 

[wolfem]

Haha. I can't win! Do you think they might have some kind of trans-dermal cholesterol releasing patch? LOL. Maybe in the future, eh?

There is a trans-dermal B12 patch. Have you heard of it?

 

[David]

I've heard of it but am not familiar with it.

 

[DustyKat]

Hey wolfem,

Do you have a copy of the pathology report from the surgery? If not can you obtain a copy?

I can fully appreciate your anger and frustration but I can also see that perhaps the extent of the surgery was necessary.

The area removed is as David has said the most common area of bowel affected by CD whether it be alone (ileitis) or in conjunction with the large bowel (ileocolitis). The fact that you have a ruptured abscess to me means you need to establish if there was also a perforation/fistula present. If this was the case then when operating it would have been a natural progression for them to remove that affected area of bowel. Abscesses and fistulas are common complications when the ileum is involved.

The amount of bowel removed would be considered conservative and when the last part of the ileum is involved there is no choice but to remove the valve and the caecum as it is not possible to anastomose the two ends, due to size differences, unless of course some sort of reconstructive surgery has also been performed. The ability to anastomose is another reason more bowel than just the diseased part is removed...you can't anastomose diseased ends.

I am not for one moment suggesting that the surgery was needed but just giving you reasons as to why it may have been.

For the surgeon to say it didn't look too bad doesn't mean that there wasn't an area that in fact needed to be resected. It may mean that he expected worse.

Dusty. xxx

 

[wolfem]

Oh yes. I see your point. My colonoscopy before I had the surgery revealed active erosive ileitis.

As stated in report:

Active inflammation with ulceration and granulation tissue. Histologic findings are suggestive of crohn's disease. However, infection, and drug injury can produce similar changes.

I can't find the actual pathology report of my surgery yet. I know I have it. One CT showed inflammation of the bowel and then the colonoscopy was performed which confirmed crohn's (sort of). Shortly after that I had another CT which showed an abscess, then surgery. So everything happened very very fast. No time to even react.

As I remember there was no fistula or perforation. I'll have to double check. The abscess was located on the outside of the bowel and was multiloculated.

 

[wolfem]

They never cultured the abscess.