Splenectomy

Hi my name is dani , I'm from ireland , I was diagnosed with itp in February aswell as ulcerative coilitis,
After failing prednisilone, ivig, rituxamab I will undergo splenectomy on Monday ,
I would appreciate any advice as I'm really nervous about the surgery

Dani - my thoughts are with you for your splenectomy tomorrow. I don't know what time it is in Ireland, perhaps you are already sleeping and will not see this until after the surgery, but if you do read this, my best advice is to focus on the positive outcomes you hope to achieve. Splenectomy was a hard decision for me, but it became more and more apparent that it was the right decision at the time. We cannot know the future, only hope and pray for the best. Try to rest tonight and give your body time to heal after the surgery. My doctors really encouraged me to move and walk as much as possible afterwards, and I truly believe that helped me. I was in the hospital for 3.5 days. I've been home for almost a week now, and I've gained back most of my mobility and been able to stop pain medication, although I'm still quite fatigued. I was really nervous before the surgery too, especially in regards to waking up from anesthesia and having discomfort, but my family and the clinical staff were very supportive. I hope your surgery goes well!

Dani I hope all goes well with your surgery and you become one of the success stories! Please let us know how you are doing!

(I love Ireland, wish we could go back for another visit)

Hi Dani ,

Had a spleenectomy in 2011 ,
held off for 15 years because I was using as last treatment . Mine worked
with what I onsider an extended healing process (Drs said 2-4 Wks Mine was 7 Weeks )
before returning to Work.
How did you make out ?
I averaged 15-20K platelets B4
now averaging 70k .

SuperDave

Did you have any more illness due to your splenectomy? Any fevers that you had to have looked at?

deceided to have spleen removed, a little nervous about it, but want off all drugs, itp about 2 years now, steriods help but 30 t0 40 mgs to reach 70 to 80, tried rituxan, didn't do much except empty my wallet a bunch, chin up.

tff, I see from your profile that you have been coming to this message board for 2 years now, so I am sure you are making an informed decision, and making the decision that is right for you.

I pray that all goes well and that you get good results, and that these last 2 years become a faded memory. I know it has been a difficult road.

Keep us posted, and godspeed.

As Rob said, I am sure a very informed decision! A hard one to make! There seem to be many success stories with it as well as those it didn't work for! It worked well for me for a year and a half now! No issues with my platelets- they are quite high now, in the 400-500 range consistently. And don't get sick more frequently then I did before even though I am now on strong immune suppression drugs for a new condition. I had figured with the combined I would be at high risk but don't seem to get sick any faster, just get treated more quickly for anything I do get instead of waiting it out. Just my personal experience but I remember before my splenectomy wanting to hear that from people. Obviously some people have other experiences though...

Did you get immunized in advance of the surgery or do you plan to? I think I recall reading at least 6 weeks in advance is ideal but even closer is better then not doing it?

Of you have questions about surgery or recovery feel free to post..I am sure I am not the only one who can describe for you either and know there are postings so won't unless you have questions.

Good luck, Tears! I hope all goes well.

Do you like that band? I love them!

Hi- Just a word of encouragement. We all do the best that we can and sometimes the spleen needs to go. I had mine removed in 2005. It didn't help, but it was still the right decision at the time. More hand washing and taking good care of yourself reduces the associated risks. I wish you the very best and recognize your courage. Get up and moving asap post surgery!

Dani
How did you mKe out after surgery?
Emily

Hi sorry for the late reply ,
Surgery was cancelled as my surgeon was out sick for few weeks , it was deferred after I went for pre operative assessment , I didn't feel right after leaving that day so after a lot of research I decided the best possible option was for me to get a second opinion in the uk from DR Drew Provan,

I have a rare association of disorders which begin with chronic ITP I also have ulcerative coilitis and immune defiency.

Dr Provan who I fould extremely helpful reccomended I try romiplostim before splenectomy, I'm 5 weeks in now -
1st week count 76
2nd- 94
3rd- 100
4th week 110
5th week - 196,

All in all it is going well I'm just suffering from real bad headaches and joint pain,
Staying positive hoping this will sort me out

Dani:

Thanks for the update. I was wondering what happened to you.

The second opinion was a great idea. You saw the top ITP doctor in the world (IMO). I hope N-Plate works out for you too considering your immune deficiency. SO far so good, except for the side effects. Those have gone away for some people in time. What about Promacta if this doesn't work out? Or, maybe they could lower the N-Plate dose since your counts seem to be higher than they need to be?

Hi Sandi thanks for the reply,

Yes I would think the dose should be lowered because I started on 1.3 mcg then increased to 2.6 then 3.9 and now 5.2 for the past two weeks,

when my platelets are below 100 I suffer from immune inflammatory bowel disease and get severe diarrhea, so they are aiming to have me over 100 at all times , to be honest I don't have very much faith in my haematology team in ireland , that was one of the main reasons I visited dr provan, they were also considering colectomy but since my platelets are above 100 my bowel has surprisingly improved .
Dr provan himself even admitted that having these disorders together is so rare it has being reported only 40 times in the medical literature since 1963, I guess you could call it unfortunate but I'm very grateful for everybody here,
Thanks

Does anyone have any explanation why platelet count would affect your bowels? That's an odd one. There is someone else here who has bowel problems when she eats fruit and when that happens, her counts drop. Once she eliminated certain foods, her bowel problems stopped and platelet counts have been mostly normal. Erica - maybe you can chime in?

Unfortunately, when two or three rare disorders occur at the same time, no one honestly has a clue how to best treat one without disturbing the others. It becomes a gamble.

I can see why bowel problems might cause platelets to drop over time, but I cannot see why low platelets would cause bowel problems. Hmmm.

That's exactly what I can't understand ,
I have being thinking maybe it is down to my immune problems , the immune system is creating an auto antibodies against platelets and my bowel which presents as itp and inflammatory bowel disease , it is very frustrating for me as it has being a very hard 2 years in which I have had over 30 admissions,

Hi,
I don't have inflammatory bowel disease or colitis. I do have fructose malabsorption and I get severe IBS when I eat many of the FODMAP foods (including onions, apples for example). That severe IBS and inflammation that resulted in my bowels (not the disease but inflammation nevertheless) triggered my auto immune disease response and my body starts destroying platelets.

Now that I have this pretty much figured out, I have been able to maintain platelet counts and avoid the severe IBS. I have occasional lapses in diet and get a brief platelet drop along with IBS and fatigue. If I'm back to a strict diet I'm usually ok again within a week.
Erica

My sister had ITP in 1982 but has been in remission since. She was diagnosed with Ulcerative Colitis two years ago, but has not had them both at the same time. They keep switching her diagnosis around between these three: Chrohns, UC and IBS.

I did find this:

Both Crohn's disease (CD) and ulcerative colitis (UC) are associated with abnormalities of platelet number and function. In the peripheral circulation the state of platelet activation is typically increased, and inflammatory bowel disease (IBD)-involved mucosa frequently contains platelet aggregates within mucosal microthrombi. The relevance of platelet dysfunction to IBD pathogenesis is still unclear, but there is solid evidence demonstrating that platelets, in addition to their traditional role in hemostasis, can also function as potent proinflammatory cells. Upon activation, platelets secrete a large number of biologically active molecules able to induce or amplify an inflammatory process through many of the same cellular and molecular pathways conventionally utilized by immune cells mediating IBD. The aim of this article is to review data on the existence of platelet dysfunction in IBD, substantiate platelets' inflammatory potential, discuss the implications of abnormal platelet activity for chronic intestinal inflammation, and consider the potential benefits of platelet modulation for treatment of IBD.

www.ncbi.nlm.nih.gov/pubmed/15128364

And this:

www.ncbi.nlm.nih.gov/pmc/articles/PMC1382343/pdf/gut00519-0015.pdf

And this:

Both Crohn's disease (CD) and ulcerative colitis (UC) are associated with abnormalities of platelet number and function. In the peripheral circulation the state of platelet activation is typically increased, and inflammatory bowel disease (IBD)-involved mucosa frequently contains platelet aggregates within mucosal microthrombi. The relevance of platelet dysfunction to IBD pathogenesis is still unclear, but there is solid evidence demonstrating that platelets, in addition to their traditional role in hemostasis, can also function as potent proinflammatory cells. Upon activation, platelets secrete a large number of biologically active molecules able to induce or amplify an inflammatory process through many of the same cellular and molecular pathways conventionally utilized by immune cells mediating IBD. The aim of this article is to review data on the existence of platelet dysfunction in IBD, substantiate platelets' inflammatory potential, discuss the implications of abnormal platelet activity for chronic intestinal inflammation, and consider the potential benefits of platelet modulation for treatment of IBD.

www.nature.com/ajg/journal/v99/n5/full/ajg2004178a.html

Ellen Has had good response to IBD symptoms and arthritis using N-A-G.
More here: pdsa.org/forum-sp-534/8-natural-treatment-methods/28353-n-acetyl-glucosamine-n-a-g.html#46599

Thanks to everybody for the helpful feedback ,