Does everyone with Crohn's end up having to have surgery?

[Ihurt]

I am rather new to this board. I have not been Dx with crohns yet. I have been having symptoms( constant intestinal pain all throughout intestines, crampy tender feeling inside intestines). I had only one episode of Diareha. When I have a BM which is usually once a day( I am sure I would go more, but am rather inactive the last three weeks due to not feeling well so I sit most of the time with the heating pad), my stools are usually soft to normal but also have whiteish yellow slime or mucus in them. my main symptom right now is pain, bloating and crampy feelings inside. I am waiting for stool culture results to come back. I am not sure what is causing all these issues yet, whether it is IBD or IBS. I have alot of other health issues( interstitial cystitis, fibromyalgia, multiple chemical sensitivities, possible autoimmune disease, grade 1 heart murmur and possible IBS) and have been chronically sick for the last 9 years.

I am so worried about having possible crohns on top of all that I already am dealing with. It worries me as I have read that 3 out of 4 people with this disease eventually end up with surgery for bowel obstructions. Is this true? Also I have mutilple chemical sensitivities and cannot tolerate most meds at all due to severe reactions so would have a hard time with taking anything at all.... Very worried..

 

[DustyKat]

I think the figure given is about 70% of people with Crohn's will require at least one surgery in their life. No doubt many of these surgeries are required after numerous bouts of flare and remission and the resultant scar tissue that builds up causing obstruction. So no, not everyone will require surgery.

On the other hand there are those like my children that required surgery at or soon after diagnosis. For them it saved their lives as without it they would die.

Then there are those for which surgery is blessed relief from symptoms that they have endured for years. For some it is the first time they have ever been able to gain remission.

Surgery is not a first line treatment but rather a last choice unless complications dictate otherwise. I fully understand your fear but surgery has its place in Crohn's and for many it has very positive outcomes. In my own case, both of my children have gone from very poor and debilitating health to remission and living life to the full.

As a side note and a personal opinion one at that: I do believe that at times surgery is left too long, in some cases, at the expense of avoiding it all costs. Also when you are living with your symptoms and their impacts for so long that they become the new norm and until that "crappy" piece of bowel is removed you don't fully realise what has been lost over the years. A bit like some one having heart bypass surgery and suddenly realising they can now do things they haven't done for twenty years. The positive effects are both physical and psychological.

I am in no way advocating surgery just showing a positive side to it and hopefully allaying some of the fears.

Dusty. xxx

 

[KWalker]

I'm going on 20 years of having crohns. I just had my first surgery back in November/11 for an abscess I had, although many people (even without crohns) can get abscesses on all different parts of their bodies. Yes mine was related, but my point is that this could have happened to anybody.

That is the only surgery I've had for crohns, and I'm currently not even on any medicine so like Dusty said, everybody is different. It all depends on severity, your doctors abilities and dedication and medication you've been on.

 

[Jennifer]

Hopefully its not IBD but I do hope you get a diagnosis soon. Some people have more severe cases than others so that number seems a little high. Surgery is always a possibility though even if you're taking every drug on the market. Sometimes symptoms go unchecked for far too long (whether its the patient ignoring symptoms or doctors ignoring patients or insurance companies giving everyone the finger) resulting in something that just has to be cut out or sometimes the disease can be far too aggressive where you did everything right but it was a losing battle from the start. The important thing is to have regular check ups and tests done to make sure that things don't get too bad. Changing your diet during a flare can help reduce symptoms and some think changing your diet entirely even while in remission can help reduce the number, length and severity of flares (research is still being done on that though). I'm someone who never changed their diet except during extreme flares but other users on the forum have mentioned feeling better by changing their diets for longer periods of time.

Its also important to keep in mind that a resection isn't the end of the world. We've got a lot of intestine in there and one surgery doesn't mean you'll wind up with Short Bowel Syndrome or even a bag. I had one resection 13 years ago and have been in remission ever since but I also take maintenance medication to try and stay in remission (I take Mercaptopurine/6MP).

There are a lot of different medications out there for IBD so there's bound to be something you can tolerate. In the end IF all you can do is change your diet then just do what you can do. We're all behind you 100%.

 

[littlemissh]

I read an article recently which says that rates of surgery for ibd are falling. This was first noted when aza and 6mp had been used and is more notable since the biologics were introduced. So the 70% is becoming less with better medical management and earlier diagnosis. That said it also said that a one off surgery for very localised disease was becoming more popular (eg TI disease) as it was so successful and very often induced very long periods of remission.

 

[DustyKat]

I have read that too LMH and it would make sense that better treatments are resulting in fewer surgeries.

I didn't know that one off surgeries were becoming popular again though. I knew they were quite a while ago for TI disease...that is interesting. I hope my kids have a very, very long remission and their ops were one off's!

Dusty. xxx

 

[littlemissh]

I have read that too LMH and it would make sense that better treatments are resulting in fewer surgeries.

I didn't know that one off surgeries were becoming popular again though. I knew they were quite a while ago for TI disease...that is interesting. I hope my kids have a very, very long remission and their ops were one off's!

Dusty. xxx

I hope they do too!

 

[Ihurt]

Thanks for all the replies everyone, it is very appreciated. I tend to be somewhat of a worrier( never use to be), ever since becoming chronically ill 9 years ago. One thing I have learned through the years of battling chronic illness is that doctors really do not know much at all as sad as it is. I have gotta tell ya, I live in Chicago and have seen some of the "so called" best doctors here and even went to the Mayo clinic for my other issues and NOT one doctor could tell me why I was so sick and had all these issues. Heck it took me going to over 9 different gastro docs to finally get a diagnosis for the small bowel dysmotility I came down with 7 years ago.. They could not even help me. It took me to be my own advocate and finally go on a gluten free diet ( even after ALL these gastro docs told me I did not have a gluten issue) and low and behold after being on the gluten free diet for 5 months, I got like 90% better with my upper gut issues!! So I have lost faith when it come to doctors and their diagnosis's.. I guess this happens when you have a chronic illness and are forced to go out there are find help, it is then you realize doctors really do not know much when it comes to these orphan diseases.

I did find one great gastro doc and he has since moved out of state . His replacement that I am seeing is very nice though, so I am thankful for that. My old gastro doc who moved was the one who told me NEVER have anyone do surgery on you unless it is an emergency. He said he has seen sooo many people have surgeries when it was not an absolute emergency and they end up with getting adhesions and end up with more surgery and more adhesions and it goes on and on until you end up with a digestive tract that is useless and does not work anymore due to all the scar tissue. I have had one c-section and an exploded ectopic pregnancy already and I know I have some sacr tissue from that. My gyne wanted to do a laproscopy a few years ago when I came down with the IC and my gastro doc said NO!! He said leave that on the back burner. I guess this is why I am so concerned about my possibly having crohns disease since surgery seems to be a common occurance with this disease. I am still in te midst of trying to figure out what is wrong with my intestines. They think I have IBS, but I have not had any tests done recently since this intestinal pain has gotten worse over the last year. I am hoping maybe even doing some natural stuff( holistic) may help me and seems to be safer in terms of medicine and side effects.. Thank you all for all the support and replies, they are very much appreciated. It is tough going through all this and it helps to know you are not alone and have people who are caring like all of you....... Thanks again.

 

[Jennifer]

They think I have IBS, but I have not had any tests done recently since this intestinal pain has gotten worse over the last year. I am hoping maybe even doing some natural stuff( holistic) may help me and seems to be safer in terms of medicine and side effects.. Thank you all for all the support and replies, they are very much appreciated.

Since your pain is getting worse it would benefit you greatly to have the tests run again like CT scan, barium x-ray, colonoscopy, endoscopy, MRI, ultrasound, pill cam, blood work (sorry if I left anything out). If you want to go the holistic route that's fine (medication does have a higher success rate) I just hope you continue to see a specialist and have regular tests done to make sure that you're ok.

 

[Ihurt]

I will likely have to get this checked out, but there is no way I will be able to do ALL those tests( could not afford that!!). I would hope they would be able to find out what is going on without having me spend thousands on tests that are not usually beneficial nor nessasary. I also am not in a hurry to be exposed to a ton of radiaiton. I am going to see my gastro doc next month so I will see what he says. I would think the gold standard would be the endooscopy and colonoscopy in terms of dx IBD. As far as blood work, I have had tons of blood work done, I am at my doctors office every couple months and she is always taking blood. I have eleveated sed-rate ( slightly) and my c-reactive protein is usually slightly elevated, but I have had this issue for years now since getting sick way before I ever had any bowel issues. I was diagnsed with having a possible undifferenciated connective tissue disease by a rheumatologist and this is likely the cause of my elevated inflammation markers, that and having chronic inlammatory issues such as Interstitial cystitis. I was told the sed-rate and c-reactive protein markers can he high for any type of imflammation in the body ( i.e. a bad cold or virus or infection). What other blood tests do they do when trying to dx IBD???

Since your pain is getting worse it would benefit you greatly to have the tests run again like CT scan, barium x-ray, colonoscopy, endoscopy, MRI, ultrasound, pill cam, blood work (sorry if I left anything out). If you want to go the holistic route that's fine (medication does have a higher success rate) I just hope you continue to see a specialist and have regular tests done to make sure that you're ok.

 

[cd 1989]

im sorry to say that i have had 5 suragys over 23 years. not doing good at this time.i will pray for you.

 

[Ihurt]

I am sorry to hear about all the surgeries. Were they all due to the crohn's? What are your symptoms with the crohn's?

im sorry to say that i have had 5 suragys over 23 years. not doing good at this time.i will pray for you.

 

[Silvermoon]

Like cd 1989, I, too, have had numerous surgeries over the years. However, as also mentioned, most of these surgeries occured earlier on before more medications were available.

I also think that, overall, doctors and surgeons are starting to find that the less they invade the body, the better. There are difinitely times when surgery is required, but I think they are starting to rethink the whole "if-it-hurts-take-it-out-and-everything-surrounding-it" frame of mind. It used to be that, if they were in there "fixing" partts anyway, they would take other things (ie appendices, gall bladders, etc.) so they would not cause "issues" down the road. I think now they are working more with the opinion that, even though an item may seem unnecessary to the body, or cause possible problems later on, it is there for a purpose and mayb e we shoulod just leave it alone to do it's job until such a time that it DOES need to be removed.

The other statistiv that we are dealing with when it comes to IBD (and other diseases as well, but more so with IBD surgeries) is, like Dusty alluded too, surgery itself causes scar tissue, which can cause problems, so 9 times out of ten, once you start having surgery for IBD, you will require surgery within the next ten years, either for scar tissue issues or a flare that did not respond to medication.

And of course, like cd1989 and I, the more surgeries you have, the more issues you have, and so on and so on. BUT, each person is different - I have had 6-7 surgeries for CD related issues over the past 25+ years, yet my brother has only had two in the past 25 years - with about 13 years in between the two.

Hopefully, you are one of the few!

Good luck

 

[Jennifer]

I will likely have to get this checked out, but there is no way I will be able to do ALL those tests( could not afford that!!). ...What other blood tests do they do when trying to dx IBD???

That was just a list of tests they can do to diagnose IBD. If they find the problem with one test obviously they don't have to do all the rest as its unnecessary. After you've already been diagnosed a colonoscopy and endoscopy are common to have done every few years even while in remission along with blood work (done more often) to make sure that everything is ok cause sometimes there can be a lot going on with very few symptoms that a patient will often ignore. Some of the tests listed above may be used after a diagnosis to locate and access a problem that can't be seen with an upper or lower scope.

Yes the blood work shows inflammation throughout the body and arthritis can elevate it but if the numbers get a lot higher/keep going up then there's obviously something else going on.

Here's a list of tests done to diagnose IBD from the Crohn's and Colitis Foundation of America (CCFA): http://www.ccfa.org/info/about/diagnose Check out the White Blood Cell Scan in the link.

 

[cd 1989]

I am sorry to hear about all the surgeries. Were they all due to the crohn's? What are your symptoms with the crohn's?

yes these 5 were all to do with cd. 4 were resection,the ,other rupture appendix.i dont spell to good,that is why i an so short with my repy. just hope i can help some one!

 

[mjoy84]

Not every crohns patient ends up having surgery. Unfortunately I did when I was only 19. I am 28 now and have been in remission since surgery. I still have painful times every once in a while due to internal scar tissue. But I have done a whole lot of research over the past years on ways to combat crohns symptoms. Kefir probiotic goat milk and cheese does wonders. Labne is a lebonese probiitic goat cheese that tasted fantastic and helps with crohns pain and also has a lot of healing properties. It helps to regulate your digestive track as well. You can find it at whole foods. I also eat a lot of foods that are high in vitamin e. I don't eat any meat besides fish like salmon. I don't think that you have to cut out meat when you have crohns but i do think it helps a great deal. Beef takes a very long time to digest and i find that choosing foods that are easy to digest and high in vitamins and nutrients helps a great deal. I also only eat bread that has sprouted wheat. You can get this in the frozen section at whole foods. It must stay refrigerated due to the live probiotics. But it's delicious full of nutrients and helps to keep healthy bowel movements a part of daily life. prune juice also has alot of healing properties and keeps you hydrated and carrot juice is great too. The disease is in your intestines and that's why it is so important to eat foods that will aid you in healing. Before my surgery i was on steroids for a while and all they did was make me miserable and even more I'll. So my goal is to combat this disease through diet. So far so good. My brother was also experiencing the same symptoms as you but he was never formally diagnosed. I helped him with changing his diet and it helped a great deal. He hasn't had many issues since. That was about 5 years ago. It doesn't hurt to try a change in diet. I hope this helps.
.

 

[LindaS]

If you can get a doctor to do a colonoscopy, I think that would be the best of the tests that Crabby mentioned. It is the "gold standard" of diagnostic tests, as the doctor is actually looking at the bowel, not at an image of it, and they can do biopsies if they see something that isn't right.

I have had 2 surgeries. With the first, I waited and waited, tried everything, lived in pain and misery on predisone for years. Finally, I decided to have the surgery. When I realized how great it was not to be so miserable, I wished I had done it earlier. I was able to achieve remission and go to law school, which I wouldn't have been able to do otherwise. About 10 years later, after having 3 bowel obstructions in 6 months, and my disease not responding to remicade, I didn't wait, but had another surgery. Unfortunately, that surgery didn't do as much to help as the first, and now my disease is spread throughout my large and small intestines, so surgery isn't really an option.

Surgery isn't something to be taken lightly, but it isn't the end of the world. They forms you sign telling you of all the risks of anesthesia and surgery are scary, but not having surgery when needed has its own risks.

I hope you can find some answers soon. Not knowing your diagnosis is worse than being diagnosed with CD in my opinion.

 

[Ihurt]

I am sorry for all that you have went through, it sounds awful. I do understand to a point, I have been chronically ill for the last 9 years, I am on disability as I can no longer work due to all my health issues. I pray I do not have crohns as it will not be very good for me due to all the other health issues I have already. Surgery for me would be very very risky. I have so many issues already. My small intestines already have a motility issue and my gastro doc told me long ago that ANY type of surgery in people who have dysmotility issues should be avoided at all costs due to the risk of further motility issues. I have a freind who hd to have surgery for a gastric ulcer and she like me had motlitly issues. Well after that surgery, she now had severe gastroparesis and cannot eat anything. She will likely have to have a feeding tube. I guess this is why I am panicking. It is not like I am healthy person otherwise.

Now I know that the colonoscopy will be able to see crohn's in the large bowel, but how about the upper bowel? I am having pain all over throughout.. I do have h-pylori, but cannot treat it due to being allergic and having serious adverse reactions to all of the meds they treat it with. That is another issue, I am unable to tolerate most antibitoics. I am on a low dose antibitoic now( keflex), have been on it for the last three years to prevent the severe UTI's I get, and it took forever for me to find this one that I could actually take without having serious effects from it.

I am going to call my gastro doc tomorrow and see if I can get in any sooner. I just do not want to wait a whole month to see him with the way I feel. Thanks again for all the advice.....

If you can get a doctor to do a colonoscopy, I think that would be the best of the tests that Crabby mentioned. It is the "gold standard" of diagnostic tests, as the doctor is actually looking at the bowel, not at an image of it, and they can do biopsies if they see something that isn't right.

I have had 2 surgeries. With the first, I waited and waited, tried everything, lived in pain and misery on predisone for years. Finally, I decided to have the surgery. When I realized how great it was not to be so miserable, I wished I had done it earlier. I was able to achieve remission and go to law school, which I wouldn't have been able to do otherwise. About 10 years later, after having 3 bowel obstructions in 6 months, and my disease not responding to remicade, I didn't wait, but had another surgery. Unfortunately, that surgery didn't do as much to help as the first, and now my disease is spread throughout my large and small intestines, so surgery isn't really an option.

Surgery isn't something to be taken lightly, but it isn't the end of the world. They forms you sign telling you of all the risks of anesthesia and surgery are scary, but not having surgery when needed has its own risks.

I hope you can find some answers soon. Not knowing your diagnosis is worse than being diagnosed with CD in my opinion.

 

[Jennifer]

If they don't find anything in the colonoscopy then they'll likely go for either an endoscopy, barium with x-ray or CT scan to look at your small intestines.

 

[Ihurt]

Thanks for that info. If the gastro wants to do the colonoscopy, I think I am just going to have him to the upper at the same time ( why be knocked out twice). I have had like 8 upper endocsopies in the last 9 years. But I just recently aquired H-pylori as it was found in a stool test I had done about a year ago. I wanna make sure I have no ulcers as I know that that h-pylori can cause ulcers. I know when I was having upper gut issues back years ago( that is when I went through all those upper scopes), well I also did this small bowel follow through, would this test be sufficient in finding or ruleing out crohns in the small bowel? Is this the barium xray you are talking about? I would rather do that than a CT scan. Too much radiation. I have had too many scans already in the last few years. I read a very good article in the paper about how doctors are way to quick to order CT scans. They said the CT scans should be avoided since they have the highest concentraions of radiation to the patient. I know that even the barium studies were talked about and they also have higher levels of radiation as well, but somewhat less than the CT scans. It is becoming a concern with all the radiation exposeure and risks of cancer, especially in people who are already chronically ill.

Well, I guess now I just have to get in to see my gastro doc. I will call tomorrow and see if I can get in sooner than my month away appt. Thanks again.

If they don't find anything in the colonoscopy then they'll likely go for either an endoscopy, barium with x-ray or CT scan to look at your small intestines.

 

[Jennifer]

You're correct that a CT scan uses more radiation but you can also see more than you can with a regular x-ray which is why its often called a double edged sword. Yes a barium swallow is a small bowel follow through and its usually done with x-rays but a CT scan could also be done. Depends on how bad things are you know? A pill cam also goes through the small bowel and takes pictures along the way. I've never had one before but no radiation used there. Might be less expensive than a CT but I'm not sure. Something to suggest to the GI since you've been having issues for so long.

 

[wolfem]

Sorry you are feeling badly.

I hear ya on the CT scans. I've had a lot too. The pill cam is pretty expensive but it takes detailed images of the intestines throughout. The only problem with a pill cam is the pill can get stuck if there is an obstruction or possibly narrowing. The SBFT still has lots of x-rays but not quite as much as the CT scan. Even though the CT scan can show more details, the SBFT can show inflammation of the intestines and even ulcers to some extent (asked radiologist).

I don't know. I honestly think colonoscopy, endoscopy and pill cam are the best. Sometimes things don't even show up on a CT scan. (all just my opinion)

I would do the pill cam if you can!

 

[DustyKat]

An MRI is another option to a CT, it uses no radiation. If a CT is looking on the cards they can reduce the amount of radiation as this was done with my son. IIRC it was called a phase 1 CT.

Dusty.

 

[Ihurt]

Thanks for all the replies. I see my gastro doc next wednesday so I will be discussing all this with him and see what he thinks. After reading all the replies and doing some research I guess it seems the best tests to take would first be the edoscopies( I may as well do them both if I am going to be put under) and then go from there. The next step would likely be either the small bowel follow through or possibly the pill cam, but I am not sure if they do the pill cam, but it is a pretty big Teaching hospital here in Chicago so they may do it. I am guessing the pill cam is very tiny so hopefully I would not have to much of a problem with it. I had a similar test done years ago when I went to the mayo clinic. It was for testing for acid reflux. Through an endoscopy they attach this tiny pill shaped sesnor to your esophagus and over a 48 hour period it will record if there is any acid refluxing into your esophagus. You also have to have this recorder that you wear on a belt or have it near you. One thing I did learn though is that DO NOT plan on going on a plane, you will have issues!! When I went to fly home all the sensors went off when I tried to pass the metal detectors. I had to explain all about the whole pill thing to them and luckily I had all my papers from the mayo so they let me pass through. And this was back in 2004 when they were not as strict at the airports. I cannot imagine how it would be now!

Thanks again for the replies and advice..