Treatment after small bowel resection

[shantianna]

I was operated on 20 days ago, I have crohn aggressive.no therapy after surgery ... I relapse, what can I take? My gastro says he says he does not take anything ...


I have left 200 cm of ileum ... how much I have left to live

 

[24601]

Medication after surgery does reduce the likelihood of relapse and the need for further surgery.

Are you currently in remission? Did the surgeon remove all active disease?

If not you would want a treatment that works quickly (steroids, EEN or infliximab), and if you are in remission then you will still be thinking of maintenance meds. Your main options for maintenance meds are immunosuppressants (6mp, azathioprine or methotrexate) and biologics (usually starting with Remicade/infliximab or Humira/adalimumab).

As to the significance of the length of your small bowel, do you know how much you had removed? In my opinion the proportion of small bowel that you have left has some bearing on your ability to absorb adequate nutrition but it's not all that easy to predict whether people will have issues with this after resection or not.

Your bowel does take time to adapt after surgery and can adapt very successfully to absorb adequate nutrition.

However it is very important to maintain as much small bowel as possible as your small bowel is essential for nutrition. If you lose too much small bowel, then you may need TPN which has associated risks, and this can ultimately necessitate the need for a small bowel transplant.

I would certainly recommend taking medication in your situation and if your doctor doesn't agree I'd seek a second opinion.

New ulcers can develop within 6 weeks of surgery so it's important to (re)start treatment quickly. There are a couple of reviews of post-operative treatment of Crohn's which may be useful to you here and here.

There is a study (abstract here) that shows that taking metronidazole for 90 days post-op reduces the chance of active disease recurring at the site of anastamosis and increase the chance of being in remission 1 year post-op. I think this would need to be started asap if you wanted to do that. In the study they started 1 week after surgery but after my surgery last summer my GI had me start 2 weeks post-op.

 

[shantianna]

Thanks for consideration.Not know how I cut, I did six surgery..the last 20 days ago on the folder's written resignation intestine remaining 200 cm.Now I have to try at all costs to block the disease. I tried all ReglanTM but now nn longer work ... I heard about the Vedolizumab (enviryo) but not in Italy yet ther's.il my already said that on me nn is fine .... I did not understand why ,,, he says it could run the new cure of an Italian study ... MONGERSEN..the know?tks

 

[24601]

Where in your bowel is the disease located?

If your doctors haven't been clear, I would ask them to clarify exactly how much bowel you had resected in previous surgeries. And from which parts of bowel these section were removed.

For example, in my 4 surgeries, I had 37cm resected in the first, 10 cm in the third and 10 cm in the fourth. All from the ileum. I also has many strictureplasties performed throughout the jejunum and ileum - so that effectively shortens the bowel a little (in the process of widening the narrowings) and the scar tissues present does also reduce the amount of absorptive surface in the small bowel - but performing strictureplasties, where possible, has maintained a lot more small bowel for me than would have been possible with resections. I now have 90cm of small bowel remaining from an original length of about 150cm - I started with a small bowel that was at the short end of the normal variation of small bowel lengths. But I'm very fortunate and can still recieve adequate nutrition from a normal diet. Some people I have read about having TPN with 170cm of small bowel left - but they will have started with longer small bowels than I did and may have had a greater proportion resected. I know certainly that I read of those who have had much longer lengths of bowel resected than I did and still have a lot more bowel remaining and get adequate nutrition.

What I'm saying is that it definitely varies from individual to individual.

But we must all most certainly try to prevent further damage in whatever way we can, and that becomes even more important the more small bowel you have had resected.

For example, the risk of me needing TPN and a small bowel transplant if more damage is done is such that I am currently having a stem cell transplant, to hopefully increase my response to current medications, since my disease has never responded well in the past.

I think that with your six previous surgeries you need to start a treatment that is available now, if at all possible.

What treatments have you tried in the past? Remicade/infliximab? Humira/adalimumab? Any immunosuppressants?

Mongersen is not yet available and though it looks promising the current formulation works only for disease in the terminal ileum and right colon so depending on your disease location may not be an appropriate choice. It wouldn't be for me since my disease has always been throughout the jejunum and ileum. And regardless it won't be available for a few years, unless you can get on a trial. Here are a couple of threads on Mongersen on the forum http://www.crohnsforum.com/showthread.php?t=72035 and http://www.crohnsforum.com/showthread.php?t=67983

 

[shantianna]

The disease affects me in the ileum always ... do not know how much they have removed ... I just know that I have left 200 cm of ileum ... I tried but I had schock..humyra infliximab did not make me anything .. now I'm afraid ... I would stop this disease in every way, but do not know how ... alternative treatments? what is really good or bad? thanks for your attention ...

 

[shantianna]

Hopefully the mongersen functions permanently as promised ... I contact the prof.Monteleone to see if it makes me go into trial testing ...

 

[24601]

Exclusive Enteral Nutrition is used as a maintenance treatment that can increase your chance of staying in remission - you have complete nutrition drinks for either 50% of your calories (Japanese protocol) or for 100% of your calories for 4 weeks, repeat every 3-4 months (European protocol). This is side effect free but only increases your chance of staying in remission and I think works better in combination with a biologic, especially when you are in the situation of needing to avoid further surgery as you are.

There are newer biologics - not just Entyvio/Vedolizumab but also Cimzia/Certolizumab and Simponi/Golimumab which might be worth trying.

Also have you tried 6mp, azathioprine or methotrexate?

I don't know how to judge the particular risks that you are facing but it may be worth considering a stem cell transplant as I am pursuing - it leads to greater sensitivity/response to meds and can restore lost response to meds to give more options. The risk has to be balanced carefully as there is a 2% mortality rate for the stem cell transplant. It is at the more extreme end of treatment but I feel it's important to know about it as an option.

Otherwise there are treatments like anti-MAP antibiotic therapy and dietary restrictions - for example the IBD-AID diet or SCD or Paleo. I don't think I would want to rely on these treatments alone if I were you but instead use them in combination with another proven treatment to increase your chances of avoiding further surgery.

I think you should see another gastroenterologist for a second opinion on your treatment options.

Let me know how you go with the Mongersen trial!

 

[shantianna]

Thank you for the helpful information ... now I active to block the most possibile..il Crohn tomorrow ... contact Prof Monteleone one who discovered Morgensen and see if I can see him for a consultation.Thanks a lot.