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Disappointing Hospital Appointment

I had my 6 week follow up with my surgeon today after my small bowel resection/diagnosis of Crohn's disease and I need to get your opinions on this. My discharge notes said that I had 'severe terminal ilietis', I also had an abscess cavity and ulcerating inflammation with 'cobblestone appearance' and skip lesions (14cm total removed).

The approach from my surgeon was that as far as he is concerned: diseased bowel removed = problem solved. He thinks I should be able to eat ANYTHING and that my bowel habits will soon return to NORMAL and that I should be able to lead a completely normal life. After reading up a lot on Crohn's disease on the internet and also the fact that it says 'severe' in my notes, also having an abscess and being really poorly beforehand, I am very hesitant to believe any of this.

I requested to have my vitamin levels monitored and he thinks that as only a small portion of the ilieum was removed - I shouldn't have any issues. Am I right in thinking that people with CD, surgery or no surgery, have issues with absorbing nutrients and vitamins? I'm going to my GP anyway for a blood test regardless.

I'm not very happy to be honest as I feel like my surgeon is underestimating Crohn's and I don't think I'm receiving the level of care that I need. I'm not currently on ANY medication and I'm still having some pain and blood every now and then in my BM. He also discussed medication to prevent relapse briefly and thinks I will only need mild medication (metho-something?) and that it might not be necessary anyway because there isn't much evidence in their effectiveness - so it's down to what the gastro thinks.

He has referred me to a gastro specialist but I have no idea how long that is going to take and what that will even involve. I'm feeling really frustrated and don't know what to do. I've been left in the dark for 6 weeks and I still don't feel like I understand my illness any better. The guy was nice and everything, but I couldn't ask him all of the questions I had, because it was clear (and he admitted so) that he wasn't the best person to ask.

Am I right to be unhappy with this or am I just not as optimistic as my doctor?
 
You really need to speak to our Gastro,Surgeon appt follow ups,don't really tell you much ,they tend to leave that to the Gastro,He is right tho,you have had only a small amount taken,so absorbing vitamins will not be a problem,I had 39cms taken the first time and had subsequent ops since,and still can absorb most of my food,I also have it in the terminal Ileium,just get your B12 levels checked as that vitamin is absorbed in the Terminal Ileium,and you can get a little low on it,I started that injection some 30 years ago and it gives you loads of energy,it's usually once every 13 weeks.Other than that you will still get regular hospital apps,(they never discharge IBD patients) and have your bloods done regular,so really do not worry,I have an impending 4th op coming up,as once you have a resection,chances are ou have to keep having them as in my case.

Trish x
 
Sorry to hear that you're having to have your 4th operation and I wish you all the best. Thanks for your advice, I will try not to worry too much about vitamin levels, but I'll get them checked anyway.
 
I had my 6 week follow up with my surgeon today after my small bowel resection/diagnosis of Crohn's disease and I need to get your opinions on this. My discharge notes said that I had 'severe terminal ilietis', I also had an abscess cavity and ulcerating inflammation with 'cobblestone appearance' and skip lesions (14cm total removed).

The approach from my surgeon was that as far as he is concerned: diseased bowel removed = problem solved. He thinks I should be able to eat ANYTHING and that my bowel habits will soon return to NORMAL and that I should be able to lead a completely normal life. After reading up a lot on Crohn's disease on the internet and also the fact that it says 'severe' in my notes, also having an abscess and being really poorly beforehand, I am very hesitant to believe any of this.

I requested to have my vitamin levels monitored and he thinks that as only a small portion of the ilieum was removed - I shouldn't have any issues. Am I right in thinking that people with CD, surgery or no surgery, have issues with absorbing nutrients and vitamins? I'm going to my GP anyway for a blood test regardless.

I'm not very happy to be honest as I feel like my surgeon is underestimating Crohn's and I don't think I'm receiving the level of care that I need. I'm not currently on ANY medication and I'm still having some pain and blood every now and then in my BM. He also discussed medication to prevent relapse briefly and thinks I will only need mild medication (metho-something?) and that it might not be necessary anyway because there isn't much evidence in their effectiveness - so it's down to what the gastro thinks.

He has referred me to a gastro specialist but I have no idea how long that is going to take and what that will even involve. I'm feeling really frustrated and don't know what to do. I've been left in the dark for 6 weeks and I still don't feel like I understand my illness any better. The guy was nice and everything, but I couldn't ask him all of the questions I had, because it was clear (and he admitted so) that he wasn't the best person to ask.

Am I right to be unhappy with this or am I just not as optimistic as my doctor?

If by "metho-something" you mean methotrexate, that's certainly not mild. Methotrexate (often just called MTX) is a drug used in chemo and is a new drug for IBD. The people I know who take MTX take it along with Remicade.

As long as all your diseased portions of your intestine are removed and the illness does not flare up, your diet should get back to normal. Most people do take some kind of medication while in remission. Since your disease portions have been removed you will most likely be on a milder medication like Pentasa, and if anything starts to flare up you would probably go striaght to the biologic drugs and/or imuran. Or MTX. The stronger drugs are better than others at keeping the disease in remission, but they do not always work. So if you're disease is not present at this time due to surgery, I would be suprised if you took MTX or one of the biologics since it'd be too hard to tell if they were working.

I also agree with you in that I don't like doctors who minimize stuff. I minimize my illness all the time, but I want my doctor to give it to me straight. Any doctor who tries to convince me my life will be completely normal with an incurable disease is one I would probably not go back to- that indicates to me that this doctor may not be so quick to recognize the next flare up, or be as aggressive as he should be in treating it.
 
If you dont mind me asking, how long did you have the crohns before this surgery? What was his reason for surgery, I mean did he try you on medications first that failed and hence the reason you had to have surgery?
















I had my 6 week follow up with my surgeon today after my small bowel resection/diagnosis of Crohn's disease and I need to get your opinions on this. My discharge notes said that I had 'severe terminal ilietis', I also had an abscess cavity and ulcerating inflammation with 'cobblestone appearance' and skip lesions (14cm total removed).

The approach from my surgeon was that as far as he is concerned: diseased bowel removed = problem solved. He thinks I should be able to eat ANYTHING and that my bowel habits will soon return to NORMAL and that I should be able to lead a completely normal life. After reading up a lot on Crohn's disease on the internet and also the fact that it says 'severe' in my notes, also having an abscess and being really poorly beforehand, I am very hesitant to believe any of this.

I requested to have my vitamin levels monitored and he thinks that as only a small portion of the ilieum was removed - I shouldn't have any issues. Am I right in thinking that people with CD, surgery or no surgery, have issues with absorbing nutrients and vitamins? I'm going to my GP anyway for a blood test regardless.

I'm not very happy to be honest as I feel like my surgeon is underestimating Crohn's and I don't think I'm receiving the level of care that I need. I'm not currently on ANY medication and I'm still having some pain and blood every now and then in my BM. He also discussed medication to prevent relapse briefly and thinks I will only need mild medication (metho-something?) and that it might not be necessary anyway because there isn't much evidence in their effectiveness - so it's down to what the gastro thinks.

He has referred me to a gastro specialist but I have no idea how long that is going to take and what that will even involve. I'm feeling really frustrated and don't know what to do. I've been left in the dark for 6 weeks and I still don't feel like I understand my illness any better. The guy was nice and everything, but I couldn't ask him all of the questions I had, because it was clear (and he admitted so) that he wasn't the best person to ask.

Am I right to be unhappy with this or am I just not as optimistic as my doctor?
 
I didn't know that I had Crohn's until I had the surgery. I was admitted for emergency surgery querying appendicitis as that's what they thought it was as a result of my symptoms.

I don't think it was Methotrexate, it was Mesalamine that he was referring to as the mild medication (just looked it up), but he mentioned both medications at some point and I must have mixed them up :)

I would love to be lucky enough to never suffer again from CD but I know that is unlikely and I would rather hear all the negatives as well as the positives. I don't want to get my hopes up just to be poorly all over again, if you know what I mean?

Do you always have to be careful with your diet even when you're not flaring or is it only when you're flaring that you have to avoid certain foods?
 
My dr has mentioned doing a resection seeing I have a small diseased area. He said that after surgery, I would most likely lead a pretty normal life but would still need to be on medication to prevent the Crohns from returning so quickly. He said I would probably take Imuran. Now, we've decided to wait on surgery and try the med approach first. I, too, had an abscess, but it has since cleared up thankfully. All my problems started with suspected appendicitis as well. I would definitely say it'd be good to watch what you eat even if you aren't flaring just to be on the safe side. Good luck to you!
 
I didn't know that I had Crohn's until I had the surgery. I was admitted for emergency surgery querying appendicitis as that's what they thought it was as a result of my symptoms.

I don't think it was Methotrexate, it was Mesalamine that he was referring to as the mild medication (just looked it up), but he mentioned both medications at some point and I must have mixed them up :)

I would love to be lucky enough to never suffer again from CD but I know that is unlikely and I would rather hear all the negatives as well as the positives. I don't want to get my hopes up just to be poorly all over again, if you know what I mean?

Do you always have to be careful with your diet even when you're not flaring or is it only when you're flaring that you have to avoid certain foods?

Not exactly. Most imporant thing to know is that everybody is differnent. Diet does not by itself, make your disease better or worse. How sensitive your gut is to certain foods all depends on the level of your disease. For example, if you are not showing any infllammation because the inflamed parts have been removed and your bowel was resected, you could end up having a perfectly normal diet just like before. Or at some point in the future a bad flare up could happen and everything you eat hurts. There really is no concrete rule as to what you can and cannot eat at any particular time. Given that, most people when they are experiencing pain or cramping, stay away from really hard foods, ruffage or other high fiber stuff (nuts, popcorn, raw vegetables, etc.) and lean towards soft, bland foods. Spicy foods irrate some people, as does any dairy product. Carbonated drinks bother some poeple. What you can do though, is just try foods in small amounts and see how much it bothers you. Currently my gut seems to be almost at the end of a flare up, and even with my ostomy I will eat just about anything. I will even eat a handful of raw almonds. But I don't like drinking dark beer, bloody mary, or anything that's really carbonated because they make me burp for hours afterwards. When that happens though, it's easy to fix with some tums, or something similar.

Just got done eating lunch and realized this is a good examle. Today I had chicken, steamed broccoli and carrots, and a baked potato with skin and some sour cream. If I was in the middle of a bad flare up, I would have eaten less overall, and completely avoided the skin on the potato. I might have skipped the steamed broccoli and carrots too.
 

Astra

Moderator
Hiya Jemma

In my experience there is a huge difference between the surgeon and the gastro. Both will have looked at your history and probably never even met up in person!
Also, from what you say the surgeon may have been a General Surgeon? Not a specialist in IBD called a Colorectal Surgeon? GS do emergency ops like appendix etc.
You've been referred to gastro? They are the ones to discuss future meds regime, cos as far as the GS is concerned, you're ok, surgery wise. And if he's not a colorectal surgeon he's just second guessing about the meds, so don't fret, don't sweat the small stuff.
Mesalazine/Mesalamine is Pentasa in the UK, maybe this will be your maintenance med, but discuss options with the gastro.
Regarding foods, IMO, Crohn's is inflammation, a flare to me is inflammation, so avoiding certain foods won't halt inflammation, but can/may reduce certain symptoms ie diarrhea.
A low residue diet will help with reducing diarrhea.
Good luck and chase that appt up, keep mithering them!
 
Thanks for all of your helpful comments :) I think I have a much better understanding now.

I hope you don't end up needing surgery traci, all the best to you.
 
....I don't think it was Methotrexate, it was Mesalamine that he was referring to as the mild medication (just looked it up), but he mentioned both medications at some point and I must have mixed them up :)

.......?

Ah, that's it. Mesalamine is a 5-asa drug, same class as Pentasa. Fyi, these may be the least effective of all our options. I will be done with my Prednisone taper on Feb 19, and my maintenance drugs will be Pentasa and Azathioprine. IF things flare up, then off to Humira I go. The medication merry-go-round with IBD is a very common thing for us, but as long as I'm healthy I don't care.

Oh, and if you do ever have to take methotrexate please call it MTX. If you call it "meth" you might get some dirty looks, or some strange new friends. :tongue:
 
Jemma, I agree with Astra. I had a great colorectal surgeon who is very experienced, but there is no way that I would have depended on him to discuss and plan my future treatment. His job is to operate and to supervise your recovery from that operation, but not to be in charge of ongoing medication or even what tests you will need in down the track. Try to get an appointment with the GI as soon as possible (although not urgently) and develop a relationship with him/her. You might not need many visits at this stage but at least you will have that contact for the future.
 
I will remember to call it MTX :thumright: haha.

Yes, I think you are all right. I was expecting too much from that appointment. The doctor I saw was most likely a general surgeon, so it makes sense that he has a limited understanding of Crohn's Disease. I suppose I will just have to wait to see the experts and try not too worry too much in the mean time.

I think the problem is that everyone says differing things about Crohn's. Eat fibre/don't eat fibre, it's a horrible disease/you'll live a normal life and it's confusing. Hopefully, it will all make more sense to me when I can see a gastro specialist.
 
You are right, Jemma, it is confusing that people say different things, but that reflects the nature of Crohn's disease.

The diet business you will eventually have to sort out for yourself by experimenting, but you are probably better to start off with soft, bland food, as Hobbes (I think it was) suggested. Then add things. If you have a problem, take note of what you were eating, then later on try it again and see if it has the same effect. Some people are able to eat almost anything.

And some people are able to live normal lives for long periods of time; hopefully this will be the case with you. But Crohn's doesn't seem to be ever "cured" with current treatments, which is why most people take preventative medications. Some people decide to take other routes, using diet, or herbs or other alternatives treatments. Whichever method is used, it is wise to have regular checkups. These are things that you can discuss with your gastroenterologist, although he/she is unlikely to want you to use any of the alternative treatments. :hug:
 
Thanks for your help Susan. It's good to be able to come onto the internet and speak to people that know about the disease and have time to answer your questions.

My diet at the minute consists of potato, chicken, fish, soup, white breads etc. I've had some issues with pork, cheese and milk but I will test them again later and see what happens. I remember before I was diagnosed that some curries and salt and vinegar crisps would give me stomach pain and bloody BMs, although looking back, I was flaring then so I will have to test them again as well.

Only time will tell I suppose :) Thanks for taking the time to respond to me x
 
You are right, Jemma, it is confusing that people say different things, but that reflects the nature of Crohn's disease.

The diet business you will eventually have to sort out for yourself by experimenting, but you are probably better to start off with soft, bland food, as Hobbes (I think it was) suggested. Then add things. If you have a problem, take note of what you were eating, then later on try it again and see if it has the same effect. Some people are able to eat almost anything.

And some people are able to live normal lives for long periods of time; hopefully this will be the case with you. But Crohn's doesn't seem to be ever "cured" with current treatments, which is why most people take preventative medications. Some people decide to take other routes, using diet, or herbs or other alternatives treatments. Whichever method is used, it is wise to have regular checkups. These are things that you can discuss with your gastroenterologist, although he/she is unlikely to want you to use any of the alternative treatments. :hug:

Ditto everything Susan said. I'd like to add that much of the confusion is also due to the disase not always acting the same way with the same person. Sometimes a person gets very, very sick but that person could be completely symptom free a year later. Long remissions are certianly possible. I was supposedly cured after surgery for UC in 1987. Even though I had multiple j-pouch failures and went with the permanent ileostomy, back then nobody considered me "sick" so I wasn't taking any medication. Went over 25 years without any meds before being dx with Crohns in May 2012. As of Today, we still have not knocked it back out and into remission again, but the flare up is certainly much better than the first time around, and getting better. So, don't stress over not knowing what this disease means for you because everyone has a different experience.
 
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