Newby Dilemma

[SumCiA]

Hi everyone, diagnosed yesterday with severe crohns of the ileum. The result of which is a large stricture. My consultant says i have two decisions, medication or surgery. He stated the advantages and disadvatages of both but thought i'd try and get opinions from fellow sufferers who have, unfortunately, been in this position before.

I must admit i am probably leaning more towards surgery, get it out of the way now for a quick fix. I have been prescribed Ciprofloxacin, Metronidazole and the dreaded Prednisolone (not looking forward to the side affects of this one) in the mean time. The surgery would be a resection.

Any opinions or advice would be appreciated. I know Crohns and the treatment can affect people differently but just need to build a bigger picture.

Thank you and good luck.

 

[Guest]

hi freddo & welcome

heck - thats a helluva decision you have to make. i'd advise to take your time deciding.

i'm not sure what i'd do in your position.. yes i've had extensive surgery more than once, but i didnt have much choice in the matter - each one was necessary.

i suppose time would play a part in my thinking.. is the stricture a risk if you leave it while you experiment with the meds? and if you went down the meds route, how long would your consultant say it would be before improvement?

a resection could well be a quick-ish fix option, but remember the recovery period has to be taken into account too, and surgery shouldnt be leapt into without really good reason, in my book. do they think they can remove all of the diseased ileum without causing too much distress to your digestive process afterwards? i think these are the kind of questions i'd be asking, to be able to make an informed decision.

i'm sure others on here will have far more experience of the medications you're on than i do. i'm allergic to metronizadole, and have only had small dealings with prednisolone, and that was in suppository form.

anyway, best of luck, whichever route you decide to take.

dingbat.

 

[Kev]

Well, guess it depends on one's perspective.. For example, surgery is a permanent choice, but not a permanent fix... There's a really big difference. If you go the surgical route, have the stricture cut out... then you can't roll back the clock

There is no guarrantee via surgery that a new stricture won't form, or you 'could' suffer from post surgical complications... even surgical adhesions or scar tissue formation. And it is possible that the site of the surgery will be the root of another stricture. so, the get it out of the way, quick fix scenario may not be that in the end.. you'll probably need at least 6 weeks to recuperate from the operation. Having said that, I've had a resection, the operation was a snap, and the recovery process was simple, uncomplicated and relatively very fast. It did not cure my problem (all my inflamation came back in 6 - 7 weeks, worse off than before the op). So, you might luck out, you might wind up with problems, it pretty much is a (I wont' say crap shoot) toss up. If you have an option, the 'best' thing may be to explore your options (while you have them). Worst case scenario is that, options other than surgery fails; you fall back on the surgery, which is where you were headed anyway. Best case scenario, no operation is required... And, keep in mind, even if the surgery is a total success, there are some 'after effects' of some successful surgeries. did the doc/surgeon advise you of potential issues revolving around possible removal of the ileo secum, (I think I spelled that right - anyone whose had this done care to fill in newbie?)
OR (well, this isn't applicable to you) but have you heard of short bowel syndrome? Or bile salts diarhea? Sometimes, surgery isnt' cut and dried (hey, sorry, but I couldn't resist that one).. Get the full details of your options before you make any permanent decisions, and ALL of the possible outcomes of them

 

[SumCiA]

Thanks guys, really good info. Def won't rush into a decision. Am going back to see Consultant next week for further discussions. You have helped me add another few questions to my list.

Thanks again.

 

[SumCiA]

Sorry, should have said, thanks Guys and Gals.

 

[D Bergy]

Can they determine how long the stricture is? I had to have mine removed as it opening was only pencil sized and I could not hardly eat anymore. But I only had three inches removed. From the picture of it, I have a hard time believing that it could have reduced in thickness no matter what i would have done. It was too far gone already.

I guess if I had the option to try to treat it, I would try it first since it does not exclude surgery later. On the other hand it really depends on how much it is bothering you.

Either way, as Kev says they often reform around the surgical area, so you need to have a plan to keep that from happening after surgery or you will be in the same boat later on. There rarely is a clear answer with this disease.

Dan

 

[GregD]

I was faced with a similar decision last summer. I ended up trying the medicinal route, which included prednisone, 5 ASA, and Humira. After about 4-5 months of medication, I eventually had the surgery. They took out over two feet (something like 60 cm) of intestine. However, they said if I hadn't had been on the medication, they would have had to remove at least a foot more.

While medication might take a while or never completely put you in remission. It has the possibility of making your surgery less serious. As it is probable that we will need multiple surgeries over our lifetime, it is wise to remove as little intestine as possible each time.

Good luck with your decision.

-Greg

 

[butt-eze]

If it were up to me I'd wait to see if the medications could slow things down prior to jumping into your first surgery. If you opt to have surgery upon your initial diagnosis you will have no prior experience with medications to know what will help you when you have your next flare. That's my two cents.

 

[SumCiA]

You don't know how greatful i am for your comments. I'm going to ask my consultant how much they will be removing during surgery. He told me that should i opt for the surgery he would put me on a particular medication that would lower the risk of it returning. Does anyone have an idea what this med would be?

If he were to tell me that he was pretty sure its only a small amount of bowel to be removed would that make any of your decisions any different? Obviously i'll ask him these questions when i see him but your opinions will always be welcome.

Thank you.

 

[Kev]

Be careful of what 'you' are reading into what the dr is saying. 'lowering the risk' is not the same as eliminating it. Be sure you know what he/she means, be careful not to assume. When the topic comes up, ask for percentages, rough estimates..
Ask what the med is, how long you'll be on it (perm, temp, indefinite) what all of the side effects are.. and what it will cost (have you priced remicade lately?). The operation: will it be the old fashioned kind (like mine, a cake walk really) or laproscopic (apparently even milder).. is it near the ileo secum valve? Do you run the risk of permanent diarhea? Is he a surgeon, or will you be handed off?
Is it a one part procedure, or will you wind up on an ostomy bag (and for how long?). Hey, I had a surgeon (and a great one at that). Told me an operation would cure me. Had the operation, didn't get the cure cause I was mis-dx'ed. I learned some lessons the hard way. One of the benefits from coming here is a chance to share that hard won wisdom, so others may be spared some of them

 

[Keara07]

Sounds too familiar as I too have some decisions to make as a newly diagnosed person, and have some upcoming surgical consults. They have been switching my meds over and over but I have been settled now for 2 weeks and I have to say, if they work for awhile and can help out either get rid of surgery or aid in the procedure, then I am for it and I am on the predisone as well. So far, def worth taking to help alleviate some symptoms at least for now. They may add some more as well, and every little step has to be weighed heavily, it seems.

I am of the mindset though to avoid the knife (esp if is could at all involve some long time recovery) plus everything I am reading and I am immersing myself, it isn't a cure. Trying to understand, and take some control if at all possible, and yes, this site is great for personal stories and the real disease. I am so happy to have come across it, and joined, just this past week myself.

I wish you well and good luck with all of this - it's overwhelming at times, isn't it?

 

[butt-eze]

It doesn't matter if he removes an inch or one foot of intestines. Your chance of reaccurance is equal. There is no such thing as a drug that lowers your risk of needing a re-section. The trouble with Crohn's & Colitis is that there is no miracle drug. If what your doctor is saying is true then we'd all be taking this medication that lowers the risk of it returning. Yes, some drugs work for some people but we don't know what will work until we give it a try.
I'm not trying to bring you down about it but that is why we are all here. None of us have the right answers to this. We can just help each other make the best decison for themselves.
I'm not saying that you shouldn't have the surgery. I'm just trying to make it clear that it is a fix for now and does not clinch the future of your crohn's.

 

[SumCiA]

Kev - you're right to highlight those questions and i will def be asking the specialist next week. Thank you. The doc is a specialist gastroenterologist. This last month i have been recovering from perianal abcsess surgery and still have a fistula, both probably caused by the crohns. I had previously been seen by a gastro surgeon who operated on me. Both these docs are easy to talk to and well respected so i'm pretty much trust them.

Keara - thanks for replying, sorry to hear about the new diagnosis. I must admit mine wasn't too much of a shock to me as i had pretty much diagnosed myself before i even saw the docs. Still doesn't make it any easier though. It can get overwhelming, yes. Especially as everyone reacts differently to treatment. It's seems like Russian roulette at times. Good luck.

Butt-eze - your not bringing me down, i appreciate honesty. i don't think the specialist meant to mean that the meds would stop it from reacurring but it would increase the chances compared to not being on any med at all.

I've pretty much come to the conclusion that i should see how this first week of meds goes. Discuss further with specialist next week, ask my questions then go away and do some serious thinking.

Thanks again everyone.

 

[soupdragon69]

Hi Freddo,

Just thought I would add my thoughts here. I was diagnosed with severe ileitis too in dec 06. Ended up in hospital last summer. They couldnt decide at the time whether I needed surgery or not..

The reason? They couldnt decide whether the narrowing I had was inflammatory or more fibrous and therefore permanent. They told me that if it was inflammatory then things would be resolved with the meds over time and they had caught it early enough to settle down. If it was fibrotic then at some point sooner or later I would obstruct or block my ileum as the area just wouldnt expand to allow food through.

I was fortunate that things seemed to be more inflammatory at the time (have since discovered for me that my crohns is more extensive and inflammatory based). HOWEVER, the docs when talking to me did say that even though surgery isnt a cure and nor can they guarantee a remission or how long that remission would last it was important to take on board the thought of having PLANNED surgery with a good surgeon rather than emergency surgery and luck of the draw surgeon wise if that makes sense?

I felt it was a valid point and am fortunate I havent had to make that choice yet but know its realistic in the future. I guess from that perspective its about picking the "right time" for you too. When in the middle of flare and trying to get your head round things picking that time can the hardest thing to do.

My thoughts are with you. Hope what I have said makes sense..

 

[CdnCrohnie]

Hi there. I have had Crohn's for over 10 years, and had managed to avoid surgery up until a month ago. I used a combination of Entocort and Imuran as ongoing treatment, and had to have a course of Prednisone once, but otherwise was able to manage with the disease. The repeated flares must have taken their toll on my ileum though, as my last colonoscopy in mid-December showed that my stricture had gotten too narrow for my GI's comfort, and that, along with my worsening symptoms made him recommend surgery. I was very much against surgery, but after considering the issues and risks of trying the medicinal route (experimenting with stronger meds, risking a full obstruction, emergency surgery, etc.) I decided to go through with a resection. They removed 25cm of my terminal ileum (including cecum and appendix) early in the New Year, and I have recovered very well.

My advice would be to determine how severe your disease is, and see if you can try the medicinal option for now. In the beginning, I was given a course of Prednisone to get my disease under control, and was then able to continue on the Entocort/Imuran combo for a long while. Though the meds do have side effects, as everyone else has outlined above, surgery is not a cure for Crohn's and the risk of recurrence is high. If you are going in for surgery, the course of antibiotics should hopefully help to ensure they don't cut out as much. In my case, I took a three week course of Cipro/Flagyll prior to surgery and the inflammatory mass that I had was reduced significantly by the time I went in.

My GI has kept me on Imuran after surgery to reduce the risk of recurrence. I tolerate it well, and it has worked for me all these years, so we are hoping that even without the Entocort I will be able to maintain remission.

Best of luck!

 

[22wendylou]

They couldnt decide whether the narrowing I had was inflammatory or more fibrous and therefore permanent. They told me that if it was inflammatory then things would be resolved with the meds over time and they had caught it early enough to settle down. If it was fibrotic then at some point sooner or later I would obstruct or block my ileum as the area just wouldnt expand to allow food through.

Hi soupdragon69,

I can find very little info online about fibrous tissue in the intestines. If you would be willing to share, I would love to know, what- if anything -did your doctors tell you about it? I realize you were ultimately diagnosed with crohns..But, I would greatly appreciate any info you can give.

I recently discovered after reading my medical records (I always request a copy) that the doctor who examined the biopsy samples from my last colonoscopy found them to be fibrous and looking more like the results of "ischemia" than like the appearance of IBD...For some reason my GI never discussed this lab doctor's findings with me. After doing some research, I found ischemia usually only effects the elderly...Being that I'm 36, I think they automatically ruled that out....But, I wonder if there are other reasons for such tissue to develop.

My symptoms have always been quite different than "typical" crohns flare symptoms. I've always maintained I feel like something else is causing the swelling they are always noting when they do CT scans, and small bowel follow thru tests....My blood tests also always come back negative for crohn's.,too.

 

[D Bergy]

I am going by memory, but I had the impression from the photo of my chunk of small bowel that it was fibrous. It was thick and hard looking. I am not sure how they define it one way or another but it looked solid.

My symptoms are a little different than most also, as I hardly ever have any significant pain.

I did not realize there were two different classes of strictures either. That is some interesting information.

Dan

 

[soupdragon69]

Hi Wendy,

Have been thinking how to explain their comments since I saw your post late last night...

The impression I got from the doctors at the time was the inflammatory process can come and go and sometimes it continues undetected for a long time. As a result the strictures develop because the inflammation is long standing and it sort of hardens and becomes fibrous (I guess a bit like a scar that has thickened).

I have no idea how long this process takes or at what stage it moves from one process to the other and could well be that each of us is different due to the individual nature of the disease we all experience.

All they said to me at the time was if it was inflammatory narrowing the meds they had me on would improve the situation and the inflammation would decrease. The meds I was on were Metro, Cipro and Steroids all IV for 2 wks along with Pentasa.

I did discover just before Xmas that the barium follow through they did showed "a long segment of ileal crohns" but I have no idea how long and intend on asking my consultant - when I remember!

Apologies if I have muddied the waters more with my ramblings. Am not too with it yet this morning!

Hope you are doing ok.

 

[Kev]

I (for my own understanding) try to simplify things to their basic building blocks. So my take on it is definitely an over-simplification... but it works for this ol fart. And it might be acceptable to others. Think of the body's repair system. You get a cut, it heals, a scar forms, and it is tougher/thicker than the original. Survival of species probably mandated that healed wounds had to be tougher than the original, or at least no weaker.. (pretty simple but sound theory, OK?)

However, in our GI tracts, this works against us.. Think about it. Ulcerations are tackled by immune system.. scar develops. But unlike chance breaks in the skin caused by the occasional wound; here the same place is tackled once again by our disease.. The healing/scarring process just repeats ad finitum... What that process is called technically, I dunno.. Think it ends with 'oid' (my memory). Why do so many bad things end with 'oid'? so, a thin layer of scarring on a wound on the outside is no big deal; but repeated build up of scar tissue in areas that are required to be flexible, pliant, expandable, contractable; welll, you can see the problem there. Put a single layer of 'tensor' bandage around your knee, its no big deal. Wrap and re-wrap layer after layer, and suddenly you can't bend your knee.. That's an over simplistic analogy of what a portion of your gut has to do to get food to pass... and yet we wonder why we get blockages, or are in pain? Or, why, occasionally, such over 'white celled' sections have to be cut out? Or why diagnostic imaging sometimes can't tell whether a tract wall is in a state of inflamation (hence the thickening aspect of it) or a build up of old scars

 

[soupdragon69]

Great analogy Kev as always. You just have this ability to explain things so much better.

My old head aint so clear at the mo to be able to express what I mean well so thanks its appreciated!