MS and the small intestine

[Paula Simpson]

Hello I'm new to the group I was diagnosed last year with m.s . last year after it was missed in 2011 I have also got strictures in more than 50%of my small bowel probable cause chrons which is going to lead to intestinal failure which means I will have surgery and a intervenous feed line put in both my gastroligist and neurologist both say the treatment for the bowel will make my m.s. a lot worse I was wondering if anybody has had anything like this that could help me as having a line is not good as not many people live longer than 2 years so I'm desperate thankyou in advance x

[Shirl]

Hello Paula

Welcome to the forum. Your post contains several points so I will break down my reply.

 

1 hour ago, Paula Simpson said:

I was diagnosed last year with m.s . last year after it was missed in 2011 

Many of us here will be able to say we empathise with you. Certainly my diagnosis took many years of yes/no. Neurologists have not got a definitive testing procedure that identifies MS. Diagnosis often involves making sure they can eliminate similar causes.

 

However, they may underestimate the stress this causes. When I was finally told - different town, different neurologist - I could have hugged him! The relief of knowing was huge but swiftly followed with 'how will I cope?'

 

1 hour ago, Paula Simpson said:

...I will have surgery and a intervenous feed line put in both my gastroligist and neurologist both say the treatment for the bowel will make my m.s. a lot worse...

Are you certain they said it would definitely make MS worse or that it might do? The thing is, our bodies are complex and MS is not alone in making us unwell. These things need to be treated.

 

Since diagnosis I've had extensive urological surgery many times. I now have an ileal conduit or urostomy as it is often called. I have lost a kidney too.

Am I worse for having MS? Certainly I needed surgery because I had a totally incontinent bladder. But my life is calm and I am loved. When I met my husband, I told him all the reasons why MS might make life hard. His response was "So?" He was right!

 

1 hour ago, Paula Simpson said:

I'm desperate thankyou in advance

This piece worries me most Paula. What support network do you have - family, friends, local MS support groups? I know it is hard, but it might be helpful to separate your MS and your surgery. Think "I would need to face this even if I did not have MS".

 

I hope I've helped and other members will add their own thoughts. Thank you for writing to us. Have a look around the rest of the forum and its resources.

Please keep in touch. 

 

Take care

Edited 10 Oct 2018, 11:00 am by Shirl
definite ➡️ definitive

[Nick]

Hi Paula,

Welcome to our group.  I can't be much use on your specific problems but I am sure that someone here may have some good advice.

 

[Paula Simpson]

Thankyou I'm so scared I hope (not wanting anybody to be going through what I'm going threw but someone has similar)as I feel like I've just been given a life sentence of 2 years which isn't good for my family or myself apparently they tell me the  tablets for my bowel will make m.s.worse and the tablets /steriods/immune suppressants will makemail bowel worse doesn't leave me much of options my Dr's seam to be clueless off what to do apart from major resection surgery which 9/10 will lead to intestinal failure which is life threatening I will be lucky if I have two years left so I do hope somebody has come through this and is OK  it's a case of more options at this point as my gastroligist  doesn't know what to do for the best I am literally grasping at straws Thankyou for your response x

[Paula Simpson]

Shirley they defiantly said that any treatment for my bowel would make m.s. worse it's gone on for over 2 years now i have had one lot of treatment that set.of m.s I could not walk my legs went dead heavy m.r.I. showed lesions in my neck in 3 places new lesions so I could not continue the medication I don't understand fully what's going on myself I was told I had m s.due to the tests done after the bowel treatment I was admitted to hospital in 2011 with weakness pins and needles in my legs I had a m.r.I. scan that showed lesions at t 7 t8 in the spine and a tumour of the brain which knocked them off I had brain surgery then a plate put in my head now no I was misdiagnosed I had m.s. but for what ever reason was not told I thought my symptoms where caused by a tumour in my spine it was my gastroligist last year who said he had read through my hospital notes and referred me to the neurologist who did lumber puncture and m.r.I. scan who said it was defiantly m.s and problems started then I have a wonderful family and the thought of leaving them before I'm 50 breaks my heart that's why I'm hoping someone on here knows anything that may hep I've talked to my g.p he says the same as hospital thankyou for responding and I'm glad things have worked out for you x

[Marina]

Hi Paula and welcome

You’ve been through so much and your situation sounds extremely distressful

When they say the treatment would make your MS worse, did they mean make it worse temporarily or permanently? If they said permanently, they did explain why?

What you were told here caught my eye:

 

1 hour ago, Paula Simpson said:

major resection surgery which 9/10 will lead to intestinal failure which is life threatening

If that’s truly the case, I’d have thought such surgery would never be performed, due to its probable consequences?

Have you thought of getting a 2nd (or even 3rd) opinion?

Is your neuro an MS specialist? Not all neuros are that up on MS unless they specialise in it.

 

We're here for you and to offer our support, so please feel free to keep posting.

[Paula Simpson]

Hello and thankyou for replying my neurologist and gastroligist are working togeather in my treatmentire plan they are both saying the same the pain of have at the moment and have had for the last two years is unbearable they tried to do a endoscopy to get biopsy but the camera would not go past the strictures so they gave me two appointments to try the oral route and the bum route to try with a double balloon endoscopy that inflates  stretches the bowel under general anesthetic to try and get biopsies but still could not get the camera in this shows how much room is in my bowel the pain if I eat is unbearable I have lost 6 stone in two years and because the bowel isn't working properly my organs aren't getting the vitamins electrolytes etc to keep going  I am now anemic I have vitamin b12 definitely my liver is producing to much protein in my blood myou heart is showing signs that aren't good that's why they are saying surgery I am just so confused i amhoping someone on here might have gone through something similar and I can go on Wednesday and say to the Dr such and such took this as I can see on there faces they don't no what's to do with me if they give me immune suppressants my m.s.will flare up worse than I am now and they don't no if I will stay like that or not so my options are not great at the moment god I'm crying as I right this to you I'm praying for a miracle I'm thinking why me it's so horrible I really am struggling I have 3 gorgeous children 7 grandchildren we have never done anything to harm anybody and I'm going to have to watch them watch me die sorry for going on in am like I said hoping for a miracle and thankyou for replying take care x