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Ileostomy issues - HELP

Posted by Boony, on Wed Sep 18, 2019 2:38 am

Hi

I am a new member and looking to see if anyone else has experienced some of the issues I currently have.

I had an Ileostomy surgery in July due to ongoing bowel issues for 3 years with no response to treatment and causing severe weight loss. Since having the procedure I now suffer the same symptoms with high output stoma which Imodium is not currently being responsive. I also have high digestive transit so any food I eat does not digest properly therefore causing absorption issues. My consultant also thinks on top of this I have bacterial overgrowth which is all contribution to the ongoing issues, weight loss and severe dehydration. After a couple of appts with doctor he has now admitted me to hospital and I am currently on aggressive fluids. He also has started me on antibiotics and looking at possible TPN to help replace nutrients I have lost. I currently also take Omeprazole and St Marks E Solution,

Has anyone else had these issues and can give me hope that all the above is repairable Sad

Having a stoma itself has been absolutely fine apart from getting used to the change in lifestyle and I have adapted well to living with Gracie (my girls named the stoma as it really helped them adapt to mummy looking different Smile )

Rach xx

Reply by iMacG5, on Wed Sep 18, 2019 11:56 am

Hi Rach.  I don't know enough about the stuff you shared but it seems you're in the very best place and in good hands to make things all better.  I'm sure others had similar experiences and I hope they jump in.  Unfortunately, sometimes folks who were really suffering get properly treated and leave the forum 'cause they don't need the help anymore.  Hopefully, when all this is behind you and you're feeling great you'll stay in touch and share all the good news.

Respectfully,

Mike

Past Member
Reply by Past Member, on Wed Sep 18, 2019 5:07 pm

Hi Rach - Curious what your 3-year struggle with bowel issues was about...Crohns?  UC?   Sounds like your doctors are taking an aggressive approach to getting your health problems fixed.  I had TPN for nearly 3 weeks before my surgery for UC, and gotta say that it helped with replacing fluids, fats, nutrition that you’re not absorbing now...plus by not eating, your digestive tract can calm down, reset with meds.  Hoping you can comment back with a good news update.  Good luck to you!  

 

James

Reply by newyorktorque, on Wed Sep 18, 2019 5:53 pm

Hi Boony   I have an ileostomy and have been on TPN for some time.  I have high liquid output and omeprazole taken before eating helps sometimes and I remain thin.  These are all indicative of SBS - short bowel syndrome (or sometimes called short gut sydrome).  The TPN is helping me with the nutrients and hydration that I am not absorbing, as like you, what goes in comes out quickly.  Mine is an extreme case but it sounds like you are a good condidate for TPN and hopefully this will assist you with what is left of your digestive system.  Most folks respond well to this treatment and will probably end up just temporary.  Good luck, keep me posted if you dont mind.

Reply by w30bob, on Thu Sep 19, 2019 1:47 am

Hi Boony,

  You haven't given us enough information regarding your condition and treatment to really comment.  What was your diagnosis before the ileostomy was performed?  What meds did they try that did not work? Normally an ileostomy is done when there are problems with the colon (large bowel), but I think it would be considered a last resort after trying all the classic IBD meds. But three years is a rather short time to have run thru all those meds, which include anti-inflammatories (corticosteroids and aminosalicylates), the classic immunosuppressants such as azathioprine (Azasan, Imuran), mercaptopurine (Purinethol, Purixan), cyclosporine and methotrexate, and then finally the (TNF)-alpha inhibitors (biologics) that include Remicade, Humira, Entyvio, Stelara and others.

  If your small bowel is affected by Crohns or similar then your body's white blood cells are attacking the lining of your intestines, causing inflammation. When inflammed the the bowels can't absorb nutrients and you lose weight. Imodium doesn't do anything for the inflammation, it only slows down the rate of your bowels peristalsis.........so it makes sense that it isn't helping you. You need to get the bowel inflammation under control, and until you do IV food (TPN) is a great way to get your weight and overall health back to normal while you figure out what's going on. 

  The problem with antibiotics is they destroy not only the bad flora in your intestines, but the good as well.  Modern ongoing research is showing adding probiotics to increase the good flora is the better way to go, but talk to your doc for specific probiotic strain recommendations.  My Gastro just gave me her latest list, but I don't have it here now.  Culturelle and Align are the two I use.  The St Mark's oral rehydration solution is the classic formulation.......the newer reduced osmolarity ORS recipe is on the World Health Organization (WHO) website, and tastes better. If you need recipies just let me know......I've spent more time making and trying different ORS recipies than anyone on the planet.

  Shout back with some more info about your underlying condition and folks can give you more detailed recommendations. Hang in there Boony.....the folks on here will help any way they can.

Regards,

Bob

 

 

Reply by Xerxes, on Thu Sep 19, 2019 10:29 am

Boony,

 

This may not be much consolation, but you only had your surgery in July. This is two months ago. Ostomy surgery is major surgery and it takes time for your body and specifically your digestive tract to adapt.Over time things should correct themselves. Right now, you're doing the right things and are in the right place.

 

Xerxes

Reply by panther, on Thu Sep 19, 2019 11:38 am

Hi, only your Consulant can answer if it's repairable, will keep my fingers crossed for you that you wil have a huge imporvement very soon. I have a jejunostomy so have a very high and liquid output, is it your GP or Consultant that's put you on imodium, Consulant is more qualified to advise on the dossage you take with there advice only you can take more than the recomended dose and take other meds with it as well to slow output down, even an injection that has some unpleaseant side affects.....Imodium liquid works faster than capsuels 

Reply by Grumpyman, on Thu Sep 26, 2019 12:30 am

Hi Rach

I had emergency surgery to remove dead and diseased colon on June 18th this year I've had , like the rest of the nation , diverticulitis with the odd flare up and during my life I've treated my body and digestive system with contemt is only word I can think of , very harshly , asked a lot of it , anyway diverticulitis treated with cipro and metronidazole which makes you feel like shit mainly because no alcohol and boy it is f#@!!ing awful if you do , trust me , anyway enough of that old bollocks .

My emergency surgery saved my miserable skin , another few hours and I would have been propping up the bar having a long with St Peter , Ollie Reed and Led Margin ! Seven hours later all colon except the blockage they thought was a massive tumour so I've got really cool colostomy and a God ugly fistula , biopsy  came back four weeks of stress later as benign thankfully , just ulcerative tissue and dead colon as the whole thing had been caused by blood supply to large bowel post where the bowel had folded couple times and trapped the artery , so had been slowly dying and decaying (lovely!) , got to overload point hence A E and seven hours , first sized hole in my gut and zip up my belly to chest , I'm eternally grateful to our wonderful NHS and especially the team under Mr Power at Addenbrookes in Cambridge . So ileo and fistula , need more surgery to get rid of last bit of bad bowel , ileo for life and I'm grateful for my.life .

I've only bored you with all this sweetie so you can see that spitting out lot of detail is very good for the soul and one's sanity and more importantly gives the guys on here more to chew on to be more specific with advice .

All I can tell you is my first two months were nightmare after came out of  HD for a week , I felt like death , all the issues you are experiencing came tumbling at me and feels like you are fighting the whole world , but the recovery is dependent on many things , but high.on list is a supportive partner and close friend and family , I had all the nutrient feed and didn't use any drugs apart from the antibiotics and Oxycontin , when my electrolytes and blood nutrient levels were riding they kicked me out (joke) and once I got home and stuck exactly to my stom a nurse's instruction about food and routines , particularly fluids and ten or twelve snacks a day , my point is Rach get as much expertise around you in hospital , a surgical consultant is not the person to tell you best practice for washing , bathroom layout , eating , drinking etc etc , my advice is follow the expert advice from the professional from the relevant field , and follow what your body is telling you as well . 

All I can say Rach , is that my recovery on stom a bad improved exponentially , my fistula is a freaking smelly ugly *** and will be out soon but it's painful as well , the worst dang thang is the incision infections and tension sutures that keep loosing off , but all can be dealt with at home with help from GP and nurse practitioners , very good .

Listen to Bob's advice , he's been through similar to you by sound of it , give up few more details will help , also use every minute you're in hospital to gather knowledge about everything you can absorb about your situation , hope you have strong support which will keep your mood high and positive , that is critical to aid recovery , also use pain meds that you need , when powerful drugs are given when you are in terrible pain they are not recreational you WON'T get addicted , just follow the Dr guide and read up to understand the product , pain will drastically adversely impede your rate and quality of recovery and management of your condition .

People will probably disagree with my suggestions , but I think I've tried to be realistic and honest , that's all .

Keep smiling Rach , and keep fighting , the feeling when you make progress is fantastic , the situation ain't gonna go away so you might as well get control of it darlin.

 

Graham

 

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